Welcome to my Aneu Day 2010+ page covering posts with recovery relevant info from 2010 through 2019.
I invite you to visit my Recovery page (from the menu above) for posts early on in recovery, 2009. I am sharing my road recovering from a massive brain bleed to share joys, challenges, and how my Aneu life is with souvenirs.
Page currently under construction. Reordering dates so they may sense. I apologize for the confusion… 10/15/2020 – Aneu
Table of Contents, by year
Aneu Day 2010
January 1, 2010
I had a very quiet, rainy New Year’s Eve with my friend in Eugene, Oregon…we only stayed up until about 9pm. We woke up to sunny skies and a rainbow 🙂 …..how could this not be a great start to a year? 🙂 We flew back to the Bay Area today with her two Persian cats. The cats were not too happy about this, but settled down after a while.
Picture this: Me with a backpack on my back; a cat in a soft carrier around my neck in front; a cane in my right hand; and my friend’s rolling carry on bag tied to my left hand with a green scarf….I was quite a spectacle 🙂
The reason the rolling carry on bag was tied to my left hand was so I would not keep dropping it. This was the best solution I could come up with because of my lingering sensory and divided attention deficit. If I do not look at what is in my left hand, I drop it, spill it, or lose it. 🙂
January 3, 2010
I had a beautiful walk around the reservoir and a nice cup of tea. I am mentally preparing to return to school tomorrow 🙂 I am taking a couple classes during the winter intersession.
January 5, 2010
I picked up most of my books for Winter Intersession and Spring Semester. I am missing one book. I am a little scared, it looks like I already have a whole encyclopedia collection….
I submitted the two remaining pieces of documentation to be fully classified as a graduate student. I’m legal! 🙂
I earned a 4.0 last semester! 🙂 Three A’s! 🙂 This is a huge accomplishment! 🙂 For nearly being declared brain dead a little over two years ago, this is amazing! 🙂 🙂 🙂
I got so excited about a recruitment for interns in Washington DC this summer….turns out they are only recruiting for undergrad students with disabilities…..
I scheduled 4 doctor appointments during spring break….
My throat is still achy and I have a raspy voice but, it’s good to be back at school! 🙂
January 7, 2010
Wow, I feel overwhelmed with my class! Because of a furlough day, the instructor made the first night of class on Tuesday and because of a glitch in with the online blackboard system I missed the first night of class. I have a midterm on 6 chapters and two assignments due on Saturday. I’m leading a discussion on Tuesday. Then a final, 6 page paper, other assignments and a possible role play…..Aye! What did I get myself into? I’m very exhausted.
January 9, 2010
My brain wants to hibernate! It hurts so much! Too much reading, sustained concentration….this class might kill me! On a positive note, I completed 6 chapters, took my midterm, and did a literature review for my class discussion. but, I feel very slow, hurty, and can really feel my souvenirs 😦
January 13, 2010
🙂 I met with HICAP this morning. They are health insurance counseling and advocacy program. My counselor was awesome. She gave me a Medicare 101 lesson and we reviewed Medigap and medicare part D coverage for people under 65. Yay! This appointment went very well and, I signed up for Medicare part F (MediGap supplemental) and Medicare part D (prescription. As of Feb 1st….bye,bye COBRA, Hello Medicare 🙂 Now, I need to do homework and reading for class tonight but, I feel much more relaxed now that Medicare is figured out. 🙂 🙂 🙂
January 15, 2010
For my Career Development Theory class I still have to complete a 6 page paper and prepare a class presentation….still feeling very overwhelmed…..I begin my spring semester on Thursday next week.
January 20, 2010
🙂 I finished my paper and present it tonight! This class about killed me! I feel like my brain is empty, and I’m exhausted.
January 21, 2010
I started my Spring semester today. So far, so good. 🙂
January 24, 2010,
I developed a really intense headache yesterday 😦 Today I felt much better and started my mountain of reading and homework stuff…..
January 26, 2010
I attended the brain injury support group tonight to see if I could volunteer. It was an amazing group and, I might be able to assist on a brain injury resource guide 🙂
January 28, 2010
I acquired another brain injury 😦 I conked the back of my dome really hard last night….what really sucked was trying to sleep without laying on the back or right side of my head….at least this injury will be easier to recover from 😉
January 29, 2010
Oopsydaisy….I totally walked into somebody…they came out of nowhere on my left. Also, I have ben omitting one letter or, adding two letters to every word I have typed…AND, I got two A’s for the two courses i took during my winter intersession 🙂
February 3, 2010
I had PT this morning 🙂 It felt great! 🙂 Funny thing happened this morning AND yesterday…..I put my head AND lucky arm through the “head hole” of my t-shirt 🙂 Have a great day! 🙂
February 5, 2010
I did an “impulse buy” by signing up for another course. I am now taking 15 units…..already feeling overwhelmed and exhausted….
Totally neat…..my ct scan and blog has become part of a High School AP Psychology project….where current students are developing curriculum to help teach next year’s students.
February 7, 2010
My lucky foot has a hard time staying on the foot pedal of the exercise bike so, I bruised up my left knee pretty bad 😦 It looks terrible….like it hurt a lot….but, I do not feel the pain. I put on a fleece sweatshirt I had not worn in a while…..I found a very long blond hair on it…..my hair from the “old days”….wow.
I was speaking with my friend last night about “re-apolstering” her couches…..I kept looking at the word and interrupted her…..the word does not look right….how do you spell it? upholster….aahhh….that looks much better.
February 10, 2010
Malfunction 😦 My Walk Aide caused skin irritation/burned my leg a bit. I will not wear the device until my skin heals 😦
February 12, 2010,
I pretty much want to roll myself up in a warm fluffy blanket and nap for a few days. My brain is saturated, I am thinking 15 units might be too much. But, I also want to attempt it and “get ‘r done” to help rebuild stamina? I have ’til the 17th to officially decide. I think my desire to re-enter the adult world is also pushing me?
My wound is healing 🙂 Soon, I should be able to wear the Walk Aide again. I feel my gait declined terribly without it.
February 15, 2010
Today marks 2 1/2 years post injury 🙂 A year ago today I left on my 30 day train adventure 🙂 I will have to look at my travelin’ aneu photos and reminisce 🙂 (check out my link to the right if you want to cyber look at the photos with me.) 🙂
I’m walking to the pharmacy to pick up my meds….I changed up the location of my electrodes on my Walk Aide….so, hoping my gait is more efficient.
February 19, 2010
I feel like I killed my medical terminology exam 🙂
February 22, 2010
PT was awesome this morning!
My to do list: 1) figure out the rest of the classes I need to take and in what order. 2) see if there is equine assisted therapy on campus :). 3) read. 4) nap. 5) class.
February 24, 2010
I had such a huge day yesterday…..so completely exhausted. But, the funniest thing happened 🙂 I was Exhibit A for the PT students neurological evaluation. Part of the eval, I had to put this quasi-helmet on that had a big antenna ball on it 🙂 while in this balance evaluator thingy….the floor moves, the walls move, and I had to close my eyes and shake my head…interesting…but, inside I was laughing the whole time thinking of my get-up….strapped in like a parachuter with a hemi-bumble bee head 🙂
My 2/24 entry below was actually my today entry….okay, so I may not know what day it is…but, at least I know where I am 🙂
March 4, 2010
I felt an ah-ha moment in therapy where my walking felt and looked “normal” 🙂 It felt awesome! Now, my brain needs to figure out how to walk that way all the time 🙂
3/2/10 Well, still don’t know what day it is….yesterday’s 3/2 entry was actually March 1st’s entry. This is like Groundhog Day but, different 🙂
March 10, 2010
My therapists are super busy at the health center so they reduced me by one hour per week 😦 But, I guess I can share my awesome therapists with others in need…..and, I’m still receiving 3 hours of PT. I did tell them they could not discharge me until I graduate 🙂 That got a chuckle. I am knee deep in midterms and feeling my cognitive souvenirs….
March 12, 2010
My professor from my toughest class put together a midterm review session. I tried really hard but, I could not come up with concrete examples for abstract concepts…..blank mind….I could not conceptualize abstract theories…I was really frustrated and cried a little bit during the review…..I feel really overwhelmed and nervous about this exam. I really hope everything comes together.
I started the Gait Balance Mobility Clinic (GBMC)today 🙂 I will now be doing about 4 hours of PT per week….2 hours in the ortho clinic, and 2 in the GBMC (neuro). I am very excited about all this PT! 🙂
For a class, I am researching posttraumatic growth….very neat subject! 🙂
March 17, 2010
I had my last midterm today….overall, I think I did okay…not 100% A confident but, we’ll see what the results bring. I have a huge group presentation next week on post-traumatic growth and positive psychology. Happy St. Patrick’s Day…I hope luck is with you today!
March 18, 2010
I saw this gal wearing a t-shirt and I was like “how rude!”….but, the more I tried to make sense of the shirt I finally figured it out….it was a huge hand making a peace sign….take the left (index) finger away….and guess what I thought I saw 🙂
March 23, 2010
I’m having some right side technical issues….my right knee hurts and looks like an alien head is popping out of it….my right heel has this big painful, bony, nodule…..I guess my abnormal gait is taking its toll.
Next week, I get my botox injections on my left side 🙂 I’m overdue and my left side is one ball of flexed muscle. A few more days and I will be on Spring Break…yes!
March 26, 2010
Phew!….I am on Spring Break…yay! My rents are picking me up Sunday. I have appointments, taxes, and schoolwork….
March 30, 2010
The great things from my appointments today were:
1) I hear normal pitch and range…..however….they cannot explain why my left ear hears things muffled…..probably nerve and brain processing…
2) The ct scan revealed nothing abnormal causing the fullness on the side of my throat or any reason for a recurring sore throat…….scratch your head and wonder?
April 1, 2010
Today was truly amazing! I attended my UCSF aneurysm support group meeting….my neurosurgeon spoke….I visited with my other peeps and the Neuro ICU nurses. Unless my rents go in tow to the ICU with me, my nurses do not recognize me because I look a whole lot different than when they took care of me. I had over 600 units of Botox injected in my left side for the spasticity….I cannot wait for it to set….like jello, but, different 🙂
I was able to drop off the surprise gift to my neurosurgeon today…I made him a personalized coffee mug….a photo with us lucky ladies and, our “Dr. Lawton’s Lucky Ladies” logo 🙂
Today was really amazing 🙂
April 2, 2010
My rents dropped me back to school today. I have a few huge projects to work on. After my amazing day yesterday….I feel sublimely blissful and kinda tired 🙂
April 8, 2010
The neatest thing happened in therapy yesterday…My index toe on my left foot activated for a few minutes 🙂 This toe typically wants to curl but, it participated….maybe for the first time? 🙂 If you think about it….how do you rewire a pathway to a second or third toe? it is not like it has an independent function.
Beyond that, I am buried under a mountain of schoolwork….but, the end of the semester is near.
April 10, 2010
🙂 🙂 🙂 I’m growing up! Krystle, her boyfriend (Ricky) and, I are moving in together next semester….into a grown-up apartment like situation. Lots more aneu things to experience….like shopping, cooking, cleaning….all the responsibilities of growing up. The great thing is the apartment is right across the street from campus. Yay!
Buh-bye dorms….Hullo apartment!
April 17, 2010
I walked around with Krystle at Vintage Days, a huge fair at school. Describing all the booths to Krystle helped put my paying attention into overdrive. I think more people walked into us, than we did them. 🙂
April 22, 2010
Physical therapists are so creative….give ’em some duct tape and rubber bands….I left therapy with the neatest contraption….a string of rubber bands attached to a calf cuff, secured to the toe of my left shoe with bright red duct tape….result: every time I toe off in the swing gaze of gait…the rubber bands recoil and bring my toe up! Neato! and, what a great conversation starter 🙂
I decided to leave “gaze” instead of “phase” in my previous paragraph…my brain still confuses “same, same, but different” sounding words….it’s kinda like charades but, different 🙂
Wish me luck as I try to replicate my duct tape thingy tomorrow.
April 23, 2010
A car ran a red light and almost got me from the left 😐
I advocated for people with disabilities and our older Americans by telling the texting tweens on the bus to give up their seats.
April 28, 2010
I had my last PT session at the Gait, Balance, Mobility Clinic until next semester 😦
I got my teeth cleaned at the City College for $15 🙂 My dental hygienist had severed the tendons and nerves on one finger of her dominant hand a year before starting the program. She has learned her skills with her non-dominant hand….totally amazing!
May 1, 2010
Yesterday I was fingerprinted for this volunteer thing I want to do and, they had a really hard time rolling my fingers on my affected side…interesting. I wonder if I have aneu identity?
May 7, 2010
Two classes done! 🙂 Three more to go…tired, so very tired.
May 8, 2010
Today I walked for Aneurysm and AVM awareness in San Francisco. I made some t-shirts for the event 🙂 The front says “UCSF Miracle” and the back says “Dr. Lawton’s Lucky Lady” with a lady sitting in a horseshoe…..only a very special few (that I know about) have earned the honor to wear this shirt…..we are living proof of LUCKY! 🙂
May 14, 2010
I am an official volunteer at the VA! I received my name badge. 🙂 It is such an amazing place and, it will be gratifying to serve our veterans…the price of freedom is seen. I have two more finals and the semester is done!
May 16, 2010
Last night, Krystle and I saw George Lopez perform….still laughing 🙂 We started moving stuff over to the apartment. Picture this me pulling a dolly, Krystle holding on to my spastic left arm….however I did not see or feel her…..then, we had a “bag” incident at a busy street corner…..it’s comforting to know that there still are Good Samaritans out there for damsels in distress! Still two more finals…..
May 18, 2010
Phew! Wow! I just completed my last final…which means…..I just completed my first year of graduate school! 🙂 I am excited about my accomplishment, especially since a little over two years ago I was almost declared brain dead. This past academic year has had its share of success and challenges but, I did it! 🙂
May 20, 2010
Last night I met up with one of our Peeps whose brother experienced a severe aneurysm rupture about 12 weeks ago. He’s still in his infancy of recovery but, hearing his motivation, optimism, and the tremendous gains he has already made, I have no doubt he will continue to make remarkable strides.
My rents arrive tonight. I’m packing up my dorm and we leave tomorrow…..mixed emotions.
May 22, 2010
I am truly exhausted. Pictured below is how Krystle and I moved from the dorm to the apartment….a minimum of 10 trips, and at least a 1/4 mile walk….phew! But, we accomplished the move almost by ourselves! 🙂 Krystle moved into the apartment and, I will join her in August since I have doctor’s appointments and stuff over the summer.
May 24, 2010
🙂 As honorary faculty at UCSF, I presented my story to the 1st year medical students. I presented with two other survivors, covering stroke recovery at different stages in the lifespan. There were 130 students. I prepared a power point and the funniest word jumble happened….as I was showing my ct scan…I meant to say “subarachnoid hemorrhage BUT, what I actually said was “subarachnoid hemorrhoid”…..I am still laughing 🙂
My parting words to the future Doctors of America included:
The reasons why I think you should specialize in neurological rehabilitation 1) you get to be creative, troubleshoot and facilitate recovery. 2) you get to work with and see miracles everyday!
I also told them to 1) transfer severe cases like mine to a university/teaching hospital…give us a chance
and, most importantly
2) Discard the idea that the only window of opportunity for recovery is 6 months to a year post injury….I am 2+ years post and still seeing improvements!
I then, took public transport back to the East Bay…which the Muni system had some technical issues…..BUT, then, I had a lovely, yummy lunch with a wonderful friend and, then an incredible nap 🙂
May 27, 2010
I got 5 A’s this semester! AAAAA 🙂 A lot of hard work…blood, sweat, and tears went into this stellar semester.
Okay, so, it is lightning, thundering, and raining and expected to hail…..my question is……since I have platinum clips and screws in my head…..will I attract the lightning? And, since I have a doctor’s appointment today at UCSF, Parnassus campus, which is at the top of a hill in San Francisco…..hmmm….I don’t know….
May 28, 2010
Busy, busy, busy. I had therapy this morning at UCSF. Then, I wore my custom contacts for 4 hrs. of vision re-training….including using public transport…..I asked a lot of questions to ensure I would arrive where I wanted to. Remember, I’m trying to regrow my vision so I am blocking off the 1/2 I do see to force the non-seeing side to do something.
I decided on quality of gait and arm swing….rather than speed on the Alter G…I walked 30 min. backwards and, 30 min. forwards…
June 2, 2010
My doctor had lectured to the 1st year medical students on the importance of having an enriched environment to optimize recovery. Sooooo following doctor’s orders, I went to Point Reyes with friends and had a picnic. Walking on sand is very challenging. I fell 5 times. I walked on my ankle bone, rather than the bottom of my foot….a lot of supination. I went to reach for something with my right hand and, my left arm could not support me and, collapsed under me…..I face planted into the sand 🙂 I gathered drift wood and engineered a fire 🙂
June 7, 2010
I have been very diligent at wearing my special contacts for 4 hours a day…..focus, train…..it is tough but, I hope my experiment will “cure” hemianopia….Think growth! think remapping visual pathway! Find the way around the roadblock!
June 10, 2010
I met a friend after therapy and had a great cup of coffee and carrot loaf. See, I’m still wearing my special contacts….I am in complete AWE of the miraculous healing I saw and heard in one of my peers I saw at therapy…..who I had not seen since before I left for school. Witnessing the results of his hard work brought me a big smile, tears of joy, and serenity. Hard work and dedication pays off!
June 15, 2010
I feel very hopeful about my vision experiment. Something is definitely percolating. 🙂 With my special training eyeballs in and in full sunlight, I can read the headlines of a newspaper….something aneu 🙂 And, I lifted my left arm up (in the sun) and saw motion of light…..and then of shade if I turned around…..something is happening…..before….I was able to see “nothing”……
Oooo and, today I am 2 years and 10 months post injury.
June 16, 2010
Wow, wow, wow. At my chiropractor appointment today…..I learned how to walk “bio-mechanically efficient”, rather than the “culturally learned” inefficient, impact-injury inducing way. I feel light, easy to move, less supination, a little arm swing, energized….it feels SO right! 🙂 Wow! This all stemmed from an innocent question regarding a type of shoe I was considering to purchase….you know….the ones that look like feet……let’s hope this effect lasts!
June 18, 2010
A very dear friend and I took a road trip today. 🙂 Destination…..Sonora, CA and my place of employment at the time my aneurysm ruptured. It was a fabulous day! I saw Kenny, the paramedic that resuscitated me, my coworkers, and customers. A truly amazing day!
June 22, 2010
I had a fun day hanging out with my friend. 🙂 The day started off visiting my therapists, doctors and, nurses from Alta Bates, my rehabilitation hospital….It was wonderful to see everyone by showing and sharing with them how far I have progressed. I left the hospital in a wheelchair and, my prognosis was terrible. Look at me now 😉
June 26, 2010
I just returned from visiting friends in Nevada City….had a fabulous relaxing time 🙂 This is what summer vacay is about!
June 29, 2010
I reported and am being considered as a juror……I find out next week. I hope they pick me….I would love to do my civic duty 🙂
June 30, 2010
Something is brewing! I had a very rough, preliminary visual field test at my optometrist appointment….it showed some improvement from last year. I cannot wait to have the big visual field tests at UC Berkeley at the end of July! I feel extremely excited and hopeful! 🙂
July 2, 2010
After the support group meeting, another Lucky Lady, my rents and I visited the nurses in Neuro ICU. They have a tough job and, I want to show them a good outcome from their hard work and say thank you!
July 7, 2010
I was a final contender in the jury selection process…and then, they thanked me for my service and excused me. It was fascinating to watch and be part of a selection process….it was very thorough…..each side wants the best jury for the outcome they desire. Overall, a neat experience….even if I got voted off…..
July 8, 2010
I was expecting relief from spasticity by having 600+ units of Botox injected in my left side. The scheduler made the wrong type of appointment…..more than an hour later I was informed…..and I felt very frustrated 😦 I hope next week’s appointment comes together better than today’s non-appointment….the downside of taking 15 units, moving, etc. is increased spasticity 😦
July 10, 2010
Yesterday, my Dad and I got massages at the massage school. It was helpful, as I have had a tremendous amount of spasticity and contractures……..I cannot wait for the Botox injections to help relieve……
July 12, 2010
I returned after a nice outing with a friend and, I witnessed a wonderful sight! My rents’ neighbor’s daughter just got her walking legs! Super cute! 🙂 I was recalling my attempts to relearn to walk and related it to a baby learning to walk…..however…..the difference between me and a baby learning to walk is a baby is trying to figure out how to operate both legs…..I, on the other hand, was relearning to walk with only one leg! what a huge difference……this baby was propelling herself forward with gravity one step after another with a huge smile 🙂 ……. until she fell on her face and bellowed wails and tears 😦 I lost my balance but, thankfully no face plant!
July 14, 2010
After my doctor’s appointment I had lunch and coffee with a friend in the North Beach district of San Francisco. Then we looked up and saw Coit Tower…….next
we decided to go check it out….totally neat! After she ends me photos I’ll share 🙂
July 15, 2010
I took BART home to the East Bay during commute time yesterday afternoon. This was the 1st time I stood on the return trip under the Bay. My ears have been very plugged ever since? Uh oh?
Today, I had 625 units of Botox injected in my left side to paralyze the muscles that want to continually contract/curl…..maybe they will add me as a new exhibit at the wax museum? 😉
I am 1 month shy of being 3 years post injury. Wow.
July 17, 2010
My ears are still a bit plugged? There has been criminal activity on my rents’ street so, as the self-designated crime watch ambassador, I got caught up on all the goings on, including Nancy Drew like discoveries. My Botox is starting to set…..finally some relief!
July 22, 2010
After wearing my constraint therapy contact lenses for 4+ hours per day, over the past 7 weeks and sporadically through last year…….I can conclusively say that I expanded my right visual field dramatically. 🙂 🙂 🙂
A side note, my left visual field has expanded about 1-2 degrees more…..(remember, this is the side I really want to expand.)
Overall my results were positive, very exciting, and hopeful! I will keep at it and prove science mistaken that yes, you can regrow vision 🙂 meaning, hemianopia may be curable!
Remapping my vision will take more time so, we’ll see what results I will get next year at my visual field test at UC Berkeley.
Although, I will not be able to dedicate 4 hours per day when I return to school….but, I promise to wear my special contacts daily for at least 1-2 hours.
July 29, 2010
Despite increased neurological challenges….lethargy, headaches, nausea, coordination, weird sensations; I have been seeing friends and doing things before I leave to visit my sister and nephew 🙂 and, return to school 🙂 . Yesterday, I saw Toy Story 3 and ate yummy dessert and breakfast(maybe not in that order 😉 .
Today, I rode the cable car, lunched, and supported a fellow survivor and friend, as she interviewed for a job During summer, I have been an extra set of eyes looking for suitable employment that she might enjoy and that will accommodate her new school schedule and, today we have success! She now has a good part time job.
Being there to support her, help find opportunity and, see her through the whole process to her interview today, confirms that I have chosen a great field to specialize in. 🙂 I am so thrilled for her! 🙂
July 31, 2010
Tomorrow, I leave bright and early by plane for Santa Fe to visit my sister and nephew 🙂 I return by train 🙂 I’ll post photos or, fun stories soon…
August 8, 2010
I have returned from a wonderful trip to visit my nephew and sister in Santa Fe. A 5 year old, and my sister, is the best therapy, ever! 🙂 I am completely exhausted. It will take days of recovering. I played light sabers, Star Wars, Dragons,ninjas phew! I had a very difficult time keeping up with my nephew’s incredible imagination and super amount of energy. I watched amazing electrical storms, hummingbirds, clouds….Santa Fe is the “Land of Tomorrow”. Here are some highlights from my trip:
August 10, 2010
Today is moving day! I return to Fresno, my aneu apartment, and begin gearing up for the Fall semester and my new volunteer opportunity. I am very exhausted, excited, a bit nervous from so many aneu things going on.
August, 13, 2010
I am very wiped out…I can barely keep my eyes open. My stuff is in my aneu apartment but, not unpacked yet. Began volunteering today….that was very cool! 🙂
My rents left today. I realized how dependent I am…tough concept to accept and it feels isolating. Thankfully my rents helped a lot, and took me to get the essential items so I am set up as best I can. Krystle and I are roommates, yay! 🙂
Now to unpack, get ready for school and take on the next level of independence….cooking, cleaning, shopping…. please wish me luck!
August 14, 2010
I went to the zoo today, 🙂 took a big nap and, then tried cleaning the tub/shower……that is very tough with hemiparesis…..
August 15, 2010
Wow, I am 3 years post injury today…a day of celebration and reflection. Happy Birthday to me 🙂
August 21, 2010
Our refrigerator broke 😦 What a big mess and a lot of food loss. I was not expecting to deep clean the kitchen so soon. But, at least maintenance replaced the fridge quickly.
I begin school on Monday. DOR will not be able to provide a check to help buy my books until the State budget passes. I feel at a huge disadvantage and nervous. 😦
This morning I assisted Krystle in making an egg sandwich which is the first time I cooked in a long time.
August 23, 2010
My first class of the semester went well today, yay! 🙂 Still no books 😦
August 25, 2010
So, cleaning, grocery shopping and cooking is very challenging. If something cannot be cut with scissors, it does not need chopping. A lot of stuff falls out of the left side of the pan….and, everything takes forever.
One of my professors decided to make her class online (because she is expecting in October). With my visual, cognitive, and auditory limitations, I ended up dropping the class because it was inaccessible and, I would not be successful…..
August 29, 2010
On my return walk from the grocery store with Krystle last night, I discovered aneu souvenir……I cannot laugh and walk at the same time! 🙂 Being present in the moment, we laughed hard. With groceries in my backpack extreme fatigue and headache; my spasticity and paresis on my left side made it very difficult to walk, my leg felt like it would almost stop working… I did not like that feeling. Now, homework…..
I am thoroughly enjoying my volunteer work! 🙂
September 1, 2010
I have resumed physical therapy 🙂 ah, so much better! 🙂 I have had a lot of my souvenirs decline and contra-lateral pains so, disciplining my body will be very helpful. I purchased my books and will wait for reimbursement once the State budget passes….poor college student…. Now, to get caught up on 2 weeks of reading and assignments….wish me luck!
September 2, 2010
Aneu souvenir….my left ribcage does not elevate when I breathe……I noticed it a while back but, forgot to share. My physical therapists prescribed some exercises to help…..I need as much oxygen I can get up into my brain 🙂
September 4, 2010
Sustained attention and energy is at the top of my list….I want to be able to return to full time work someday. Currently, I volunteer 4 hours, 2 days per week. I take public transport to and from, each direction about 45 minutes to an hour. When I return home after volunteering, I can barely function and will take a nap that may last 2-4 hours. I hope my endurance and tolerance increases over time…
September 9, 2010
My therapist discovered one of my rips on my affected side is maligned, which could contribute to my scapula pain and possibly my ribcage not breathing on my left. Fresno State has such an awesome physical therapy program 🙂 Pop my rib back in and use some WD-40 to loosen things up 🙂
September 14, 2010
A simple sore throat is a lot more debilitating after a severe head injury 😦
September 16, 2010
Although my sore throat is resolving, I had a couple spells of light-headedness with related “stuff”. I feel very fatigued and want to feel like I am making headway on all my reading and assignments. Maybe the weekend will bring some energy? (I can only hope 🙂 )
September 19, 2010
I am asking a lot from my body with school, apartment things, volunteering. I thought by now, I would have begun to adjust to all the demands but, I am feeling very, very exhausted and not like I am able to regenerate or recuperate. I do not have enough energy to do everything I need to do….. but, I hope I will soon….
September 21, 2010
Now serving oxygen, daily! 🙂 My friend has set me up with my own “oxygen bar”. As the oxygen builds in my system, I am hoping to see overall improvements. Yesterday, I began the Gait Balance Mobility Clinic…..2x per week for 8 weeks 🙂
September 26, 2010
I spent the night accompanying my friend at the ER. I am glad I was able to be there for her and advocate for her rights. I hope that everyone who goes to the ER may have someone advocate for their best interest because it helps. Thankfully, she is feeling better today.
October 4, 2010
After I finished my pre-gait activities and got off the body weight supported treadmill I walked pretty awesome. 🙂 I wish I could keep that feeling forever but, the physical therapy magic wears off and I regress to my typical gait 😦 I hope one day my gait becomes easy and efficient forever. More work and dedication 🙂
October 6, 2010
Oops….I burnt two fingers trying to cook something….and, some of the food fell out of the left side of the pan and on the floor…..oh well.
October 14, 2010
I am feeling really fatigued and have a grip of spasticity but, hanging on…..
October 22, 2010
My rents picked me up from school and drove me to UCSF for my Botox appointment. The doctors inject botox to paralyze the muscles on my affected side that continually contract and flex so that I can obtain better function, movement, and gait. 625 units of Botox were injected. We drove back the same day. I am super exhausted….
Although the Botox takes about 14 days to set, I feel I am already getting improvement 🙂 Yay, placebo effect 🙂
October 26, 2010
Kinda funny? 🙂 I returned from class to realize I had dried toothpaste down the left side of my face. um, would have been nice if my classmates or professor told me…
November 1, 2010
I just enrolled for Spring semester classes. Due to the after effects of the State budget woes, I cannot take what I had planned for. Two classes I need are being offered at the same time.
As it stands, I will graduate a semester later, in 2012, rather than 2011. That is, of course, if no other sections are added.
Staying an extra semester is okay. I guess it is someone’s way of giving me extra time to recuperate so I am job ready come graduation? 🙂
Now, off the physical therapy. Have an awesome day!
November 7, 2010
With the end of the semester nearing, that means my physical therapy on campus is drawing to a close 😦 With PT and Botox, I made some gains in balance, gait and want to keep them until the Gait Balance Mobility Clinic resumes next semester…….so my physical therapist made an awesome home exercise program, including exercises at the Rec Cen on campus. I did the new routine yesterday and today….phew! I think it is time for a hot cocoa and a nap?
November 8, 2010
I think I am jet-lagged from the time change? In therapy today an orthotist was visiting. I will be trying aneu type of device for ankle stability….I’ll keep you posted…..
November 10, 2010
It was dramatically chilly in Fresno (90 degree weather turned 40 degrees). As a result, I had a ton of spasticity and almost could not walk….that was very scary. In PT we worked on tone reduction and I am walking better now 🙂 It was my last day of Gait Balance Mobility Clinic……sad….but, they had homemade cookies and strawberries for our last day….happy
November 18, 2010
My rents picked me up in Fresno to take me to see my way awesome neurologist at UCSF. Then, I got a mani/pedi and eyebrow wax. It has been a super huge day but, all good. 🙂 I have another doctor visit tomorrow and then I am a participant in a hemianopia workshop. I hear bzzzzing……do you hear my bee wings flapping?
November 21, 2010
I returned by train back to Fresno after a packed few days of doctors’ appointments, visiting with friends, and doing things. Tomorrow….back to school and volunteering……here is a glimpse of my few days in the Bay….
November 25, 2010
It is nice to have a day dedicated to giving thanks 🙂 We do not need to wait until next year to be thankful……we can always have booster thanks 🙂
November 28, 2010
I took a class that incorporates tai chi, pilates, and yoga. I tried really, really hard. I completed about 3% of the moves, modified, turned the wrong direction a lot and, really had trouble copying what I was seeing into making my body do the same thing. I will try again 🙂
December 1, 2010
Today, I had my last PT session until next semester….feeling a little poopy about the 10 weeks of no PT. I have a great home exercise program but, it does not replace the facilitation that the physical therapists provide. I hope I am able to maintain some of the gains I made.
December 4, 2010
I got culture by going to an opera and choir performance on campus. 🙂 It is neat to add something aneu 🙂 I picked up some Fresno State produce, yum. And, I squeezed in some very low energy exercise. Ready for bed at 6pm? Sure.
December 9, 2010
I was studying and ended up with a drool puddle on my book, oh well. I have been feeling like in a perpetual state of confusion, weird. After a super busy day my roommate and I were talking and she said I was slurring my words badly….hmmm, they sounded fine to me? Today my gait was very labored, inefficient, and uncoordinated. I guess it was a tough neurological day….
December 16, 2010
I completed my semester at school, phew. I am getting ready to move into my own apartment in January 🙂 Yay! The next step of independence.
I began wearing my Walk Aide again, since the skin irritation from the electrodes finally healed. I had not worn the Walk Aide for 6 months so, my foot and ankle were not coordinated and I tripped over my toes and hurt my ankle 😦
December 22, 2010
I have had a huge couple of days…..my rents picked me up, had a doctor appt., hair appt., organic salad lunch with a friend, saw the holiday window decorations, watched ice skaters and pigeons, took public transport……super exhausted.
I am working on a fun secret project 🙂 I hope it turns out well.
Funny, I tried to cross my fingers on my affected side……took me forever to try to figure out how to do it. Those little things I used to take for granted, wow.
December 24, 2010
At least my foot is not fractured but, I bruised my peroneal breves tendon badly, at the site of where my previous fracture was.My left foot is bruised and should heal in about 6 weeks.
December 29, 2010
My foot is still bruised but, healing. Getting ready to close out 2010 and looking back at the successes and challenges of this past year. I am welcoming 2011 with open arms and know it will be a wonderful year! 🙂
Aneu Day 2011
January 1, 2011
May your 2011 be filled with hope and happiness 🙂 I have big plans this year. I will be moving into my own apartment. I will be the keynote speaker for the American Association of Neuroscience Nurses. It is my final year of graduate school. I will begin an internship in the summer. Lots of things slated for this year…..I am getting overwhelmed thinking about all of it but, I am looking forward to all the excitement 🙂 Happy New Year!
January 5, 2011
My grades for last semester just posted. I worked very hard and received 4 A’s 🙂 It was my 3rd day in a row volunteering. I am very exhausted. I went to cross the street and I let the pick up truck turn the corner before I began walking into the crosswalk……..except, I did not see the trailer attached to the back of the truck…..it was on my left…..thankfully it was only a scary near miss…..
January 8, 2011
If you always plan for the unexpected, you would live in a state of “What if?” I deal with “What if?” when it happens….part of my “worry-less” attitude.
This morning I got word from the leasing office that my aneu apartment will not be ready on the date I signed for because the previous tenant has not turned in their keys. It is possible that my move in date will be my first day of school, or later 😦 I will keep you posted.
Now, I can reveal my secret project 🙂
I made a “clipped aneurysm” photo holder ornament for my neurosurgeon, nurses, Neuro ICU, social worker, and a couple other survivors. The photograph in the ball is printed on transparency paper, the “clip” is a hair clip, the ball is a red glass ornament. I recruited help on the fine motor finger dexterity portion of the project. This project was something fun, special, and meaningful 🙂
January 13, 2011
I have been tricked again! This is the third time my green bananas did not ripen. It turns out that my grocery store puts bunches of green bananas and green plantains on the same shelves…..really? Boiled plantains are good but, a banana would have been better.
January 20, 2011
I love my aneu apartment! It is all my own 🙂 It is nice to finally gain another level of independence after these past 3 years of dependence. I need to unpack but, so far it is great! I began school this week but, missed my 1st class since I just had 675 units of Botox injected on my affected side. I had recently acquired an internal shoulder rotation weird finger flexion spastic arm, which accounted for the additional units. I am hereby awarded the highest number of botox units injected at the UCSF Movement Disorder Clinic…..what an honor 😉 I hope that one day I will override spasticity with PT, Botox and the “Jedi Mind Trick” 😉 One of our Aneu Peeps competes in some high intensity sports competitions…..perhaps one day, if I keep trying…..
School, moving, doctors’ appointments….I am overwhelmed this week with so much going on, exhausted, and unsettled. It will be nice to get into a groove and routine. I find routine, scheduling, and compartmentalizing activities helpful so I do not feel so overwhelmed.
January 24, 2011
I was asked to speak to the Cub Scouts tonight about positive attitude and my disabilities. That was fun.
I am feeling really overwhelmed with my first week of school. Three of my classes are off-campus so I have to commute….which is really adding to the stress. I really hope I get into a groove soon…..
January 29, 2011
Let’s start off with……I woke up this morning 🙂 But, I had a huge headache. Then, my toilet would not stop filling with clean water so I had a “minor” flood. And then, my clothes in the dryer became all wrinkled because I was trying to bucket the water out of the bathroom. The wet vac that maintenance is using is really loud. So, all my plans to get caught up on my syllabi (plural of syllabus?) got goobered. Feeling super overwhelmed because I now have to clean and stuff. At least it was clean water. Sigh.
My apartment is not the only one with flooding…..it is an epidemic. I am hopeful that the one upstairs does not start to flood……
January 31, 2011
I was so overcome with exhaustion I kept nodding off, and drooling during class… During break I put my head down and closed my eyes and kind of pulled through for the rest of class. (btw….I sit in the front row of class…..embarrassing…..)
It turns out that I will not be able to participate in the Gait Balance Mobility Clinic this semester because of my class schedule. I will be able to get some physical therapy at the student health center once a week.
I have decided it is really important for me to learn how to run to catch the bus…..
February 8, 2011
You may call me 2 of the Seven Dwarfs (Sneezey and Sleepy) I might want to add two more of Headachy and Sorethroaty. I have acquired a spring cold that has hit me hard and left me pretty foggy headed. I hope the sun dries up my cold soon. It is a beautiful spring day.
I saw the coolest thing on Sunday when I left the library. Two strangely curious and friendly squirrels on campus were perched in a leafless small tree eating a bounty of red berries. I talked to them a little. They looked pretty happy and made me smile even with my cold. It’s those simple things in life that can bring so much joy 🙂
February 12, 2011
A simple cold after brain injury is much more severe. I am still snotting and when I blow my nose hard I think my brain squirts out my right ear a little bit? 😉
I was practicing smiling in the mirror. The left side of my smile is still paralyzed but, unless I point it out the asymmetrical smile, I am sure my smile passes 🙂
Off to the library to research….enjoy the sunshine…
February 14, 2011
I never want to be one of those people who are late and blame the bus. I leave with a cushion. This morning, both my buses broke down and it was raining, argh! Determined, I hauled tail, covered ground, and was one minute late….I dislike being late but, I pretty much made it and without blaming the bus…
February 16, 2011
“Diangle”? ……word salad for “Diagonal” 🙂 I have had multiple word salads today? PT was really good 🙂
Yesterday, I mailed my application to take the rehabilitation counselor certification exam, which is required to graduate. I had a huge smile and felt really accomplished turning the app in……little steps leading somewhere 🙂
February 21, 2011
I had a lucky treat of a session with my friend’s physical therapist 🙂 I have some aneu exercises to enhance my home exercise program. I really should create a sister website of ideas from all my therapy to share the variety of strategies……
February 26, 2011
I had an excellent home exercise gym workout. 🙂 Then I went to the library to research. Microfilm technology, confusion, and my affected hand made finding and centering the article really tough……thankfully it was only a 10 page article. Funny thing on my restroom break……I spinned the toilet paper one direction…..nothing. I spinned it the other direction……nothing. Confused, I looked closer and realized tp had been coming out of far the left side….. 🙂
February 28, 2011
The Hairbrush Caper? Recently, my hairbrush has decided to take small AWOL’s….I find it in the most interesting locations…..very confusing. It must be the washing machine sock gnome expanding his inventory? Perhaps it is my vision. I think it’s the gnome. 😉
March 1, 2011
I have an idea for creating an assistive device that will help land my foot more in neutral, rather than inversion, while walking…..I bought a bunch of supplies and I will work with my McGyver PT’s tomorrow 🙂 Seriously, PT’s are very creative…..give them a roll of duct tape and there is no telling…. 😉 Once completed, I will share.
I had a major dressing malfunction yesterday that landed me on my unaffected hip really hard…I feel tender and bruised 😦
Very cool, I was invited to join the Phi Kappa Phi Honor Society 🙂
March 3, 2011
I fell hard again….totally tripped over a bag on the floor and nearly acquired another brain injury…..yikes! Concerned over my hip from the previous fall this week, my PTs suggested xrays. Great news….no fracture but, badly bruised hip bone. My PTs strongly encouraged me to slow down, focus, lighten my responsibilities since falling like this is not my usual….
March 9, 2011
White knuckle apple eating! After working on this for 2 years, I am pleased to announce I can hold an apple with my affected hand and eat half the apple. 🙂 Granted, it was a soft, mealy apple….crisp apples do not work….and, rather than bringing the apple to my mouth, I brought my head to the apple…an easy compensatory strategy. And, glad he poor apple couldn’t feel because I had a white knuckle death grip on it…..and I had to stare at the apple the whole time.
Then in PT, we discovered that my left hip lags behind, leaving me vulnerable to hyper-extending my knee with each step. With my therapist holding my hips solid, pointed forward, and with taking small steps, I did not hyper-extend my knee as much. Now if I could have a physical therapist follow me wherever I go….
March 17, 2011
Feeling lucky 🙂 Happy St. Patrick’s Day! I really think I met a leprechaun at the bus stop…totally cool!
Almost beginning to feel that I am getting a handle on my coursework…..it is getting close to the end of the semester.
Preparing to depart to Kansas City, MO as the keynote address for the American Association of Neuroscience Nurses….totally excited! 🙂
May this be a lucky day for you, too 🙂
March 24, 2011
I returned from a 36 hour round trip to Kansas City, MO. I was the Keynote Speaker for 650 American Association of Neuroscience Nurses. It was an amazing experience! 🙂 I spoke for an hour. The room was energized.
The best part was saying thank you and recognizing these nurses who give so much of themselves to our recovery, have a very tough job, and may not know the outcome of their efforts.
I received a standing ovation at the end and lots of hugs. I feel super exhausted and accomplished. This was huge.
March 28, 2011
I tried to maneuver backwards from where I was and fell, hitting my right butt cheek hard. Ouch! Sitting is super uncomfortable
March 31, 2011
This is a test! It was a pretty day and I picked up a cherry tomato plant and a red devil pepper plant, dug a little hole in the ground with a spoon, planted and watered them. The test will be if they are happy, grow, and produce a bounty of produce……(keep in mind, pre-injury, I was vegetable garden challenged). 😉 I hope my plants like their new home and I can share pictures of the harvest 🙂
April 5, 2011
I am in a walking cast while I am being diagnosed…….I have a possible hairline fracture of my tibia, a bone strain of my 5th metatarsal. 😦 At least my 2nd toe is not broken 🙂 (I totally tripped over my 2nd toe the other day). My doctor at the student health center and radiologist should let me know by the end of the week. Until then, I am sporting this boot.
April 7, 2011
I was feeling a bit discouraged on my biological birthday yesterday. Some of my professors feel that when I ask clarifying questions in class to learn better, that I am challenging them. This was brought to my attention. I felt really discouraged since I have put my heart and dedication into the program. In my weepiness, I consulted with a faculty member to help me process this. It appears there is a disconnect between my demonstrated “smarts” from book learning and my cognitive limitations.
To my Aneu Peeps,
Even within the rehabilitation counseling field, our visible and invisible disabilities can be misunderstood, forgotten, or not taken into consideration. We are held to the standard of “normal” persons (read, without brain injury). This can be tough, frustrating, and overwhelming. Please remember this misunderstanding or inconsideration of who we are now, the aneu whole package, is not a reflection of us. Continue to have drive, be determined, try your best, despite minor bumps in the road that feel so huge.
April 11, 2011
I do not have a fracture (fx) of my tibia 🙂 However, I do have a “questionable” fx at the base of my 5th metatarsal (the bone connected to the pinky toe). 😦 This fx really appeared after I tripped over my curled 2nd toe, between xray photo shoots. I get to wear that fancy, clunky walking cast boot for the next 4-6 weeks. Aye.
April 13, 2011
I was inducted into the Phi Kappa Phi International Honor Society, recognizing my academic integrity and dedication. 🙂 Very Cool! 🙂
April 20, 2011
Hope springs eternal 🙂 I had a brief visual field test that showed some improvement to my left hemianopia in my right eye compared with last year 🙂 I will need a more in-depth clinical test but, I will take this as hope and confirmation that my vision experiment is doing something. 🙂 Hope. 🙂
My chiropractor adjusted my hemiplegic 2nd toe…..it needs to be reminded it is there, since the 2nd toe really does not have an independent function. I also had my head put back on straight 🙂
Mmmmm…..I had cake for lunch with an amazing friend. It reminded me of Bill Cosby’s Cake for Breakfast skit. All the major food groups…. 🙂
During Spring Break I am getting caught up on a bunch of doctor appointments but, have not done any schoolwork, yet……and, 3 weeks left in the semester, it is crunch time…..
It was a happy day! 🙂
April 22, 2011
My right retina has changed color? My visual field improved “slightly”? …..what does this all mean? I have sent an inquiry to my retina surgeon…..keep you posted….
I have maxed out the amount of Botox they will inject. I reached 700 units of Botox injected to control my spaticity and internal rotation. I am the winner of the most units injected at one time 🙂 It is good to be good at something 😉
The extra units were used to get my 2nd toe. It became so curled after the last Botox wore off that I tripped over my 2nd toe, twice. Then we also isolated another muscle that connects my scapula to my neck. My physical therapists and Botox Doctor work together with me to improve injection sites, dilution, etc. s I can gain the best function for the 3 months the Botox works. This is very neat. I cannot wait for the Botox to set….relief is pending 🙂
April 27, 2011
I enrolled in my final semester 🙂
My physical therapist inspected my head. I hit the corner of the hood over the stove with my scar…ouch! I thought I drew blood. Thankfully, there is no open wound.
May 2, 2011
I walked for AVM and Aneurysm awareness in San Francisco on Sunday. It was gorgeous weather. The funny thing was becoming a trailblazer 🙂 My peep and I were walking, missed the turn off for the route, twice, and ended up doubling our mileage… 🙂 At least we did not end up in the water 😉 It was wonderful seeing my peeps and meeting aneu peeps.
I met a gal who had an avm rupture in the Sierra Nevada foothills, where my aneurysm ruptured. She was medi-flighted to UCSF and had the same surgeon as me. AND, the company I worked for at the time of injury bought the pig she raised and sold at the fair, when I was still working there. What are those odds?
I was asked to share my story at the walk during open mic. I visited my neuro icu nurses before heading back to school. I am truly exhausted. This was an amazing experience.
Check out my aneu hair cut 🙂
May 9, 2011
It is crunch-time at the end of the semester and I feel overwhelmed. Picture me sitting on the floor with a whole bunch of journal articles around me….needing to be synthesized into one big proposal…….and that is only one assignment. I think my brain is bleeding again 😉 I want to nap.
May 11, 2011
I had repeat x-rays, showing some new bone growth over 2 hairline fractures, one of my distal tibia and the other at the base of where my pinky toe attaches. Good thing I see my neurologist and prosteetist next week.
May 12, 2011
I did a doozy 😦 I nicked the concrete base of a telephone pole (that is on the sidewalk) with my right foot. I fell really hard, chipped 2 teeth, busted my lip, hit my nose, scraped my hand, elbow and knee. All the injuries are on my left side…..my thinking is that the paresis did not help stop my fall 😦 I literally think I bounced my face off the pavement. Note to self: My head is not a basketball. A nice man helped my bloody face up. The health center cleaned me up. I am very sore 😦 At least I did not knock out my teeth.
May 14, 2011
Ouch, still really sore from my fall…especially inside my head and my face.
Now, I am really confused. I watered my tomato and pepper plant last night, told them a good night story (I talk to my plants)…..and this morning my pepper plant was AWOL. I did a short recon mission…it does not look like it was pulled in or out of the ground, or eaten? Did my pepper plant grow legs and run away from home? My tomato plant it about at my hip, with many little blooms 🙂
May 17, 2011
I completed the Spring semester 🙂 🙂 I begin my part-time internship next week 🙂 All exciting things!
May 20, 2011
Recovery is not a straight road. I was diagnosed with a concussion from my fall and a ct scan was ordered. Concerned with the huge increase in falls, my doctor wants me to use a single point cane, at minimum. Preferably, a 4 wheel walker. Without the formal gait training and the increased activities in my schedule, I declined a bit…
…..two quotes to think about….”if you do not use it, you lose it” and, “you never forget to ride a bicycle”. Both are very true! 🙂 I cannot wait until fall semester to get back into the Gait Balance Mobility Clinic. My home exercises will help until then…….not only do I want to get back to where I was…..I want to get better than that! 🙂
My orthotist, “the mad scientist”, created a neato temporary orthotic to protect my 5th metatarsal fractured area, and decrease spasticity. I was on the right idea with the duck tape and cushions thing I created……but, mine is sooooo low budget, and does not accomplish what my orthotist created. It is amazing! 🙂
I may have my 2nd toe surgically fused on my left foot…..it curls, I trip over it and, I cannot extend it….
May 25, 2011
I began my internship today. 🙂
Yesterday, I was guest faculty, lecturing to 1st year medical students at UCSF. It is great to share a patient perspective on recovery to the future doctors of America 🙂
Then, I visited my ICU nurses and social workers. It feels great to hug the people who took care of me 🙂
June 1, 2011
My tomato plant, Amy, is almost as tall as my shoulder and is producing fruit 🙂 I received 3 A’s last semester 🙂
Still recovering from the concussion…very tired….
June 2, 2011
June 6, 2011
Wow, I am trying to get used to my 5 hour a day 5 day a week internship. At times I feel extremely fatigued, overwhelmed, fragmented, increased spasticity, etc. Before leaving, my supervisor asked me to do something tomorrow, it seemed easy enough and logical to remember BUT, now I cannot figure out what that was? I took a huge nap. Hoping my body begins to get used to this schedule…..
June 8, 2011
I only needed four things from the store and they were out of shopping carts. I figured I got 3 things in my right hand and went for my last item, a package of 12 rolls of tp. I could not grasp it but, could knock it off the shelf. I kinda kicked it over to a store associate and asked for their help to put it under my affected arm. That did not last and it fell to the floor once again. I ended up kicking the package like a soccer ball to check out….compensatory strategies! 😉 I think people were kinda staring at me….
June 10, 2011
I got an email and have to share the contents…this may make you laugh…funny brain stuff…How smart is your right foot? 1. While sitting at your desk in front of your computer, lift your right foot off the floor and make clockwise circles. 2. Now, while doing this, draw the number ‘6’ in the air with your right hand. Your foot will change direction.
June 14, 2011
I turned in my advancement to candidacy which means I am very close to getting my Master’s degree. 1 class, the internship, and a 6 hour exam 🙂 Not bad for a gal who survived brain death! 🙂
June 22, 2011
This heatwave is really zapping my energy….
The one and a half hour bus commute to my 25 hour per week internship is also zapping my energy….therefore, this is what I decided:
When I become employed….Ideally I need to live within a block or so from work, the grocery store, the dry cleaners, the gym, and a main public transit hub……looks like I am headed to a big city when I graduate! 🙂
June 25, 2011
My big plan to study today got diverted after I stepped into a “big” water puddle this morning….the tenant upstairs had a water containment issue…It is not a terrible flood but, it is not great either. I am beginning to think I may need waders, boots, a fishing pole, and an umbrella to live in my apartment? …it is my 2nd flood. Lots of cleaning but, it is still wet and there is a bit of a strange odor 😦
July 4th 2011
What would freedom be after a severe brain bleed? I would like to be free of spasticity. What would freedom look like for you?
Ever since bouncing my head off the pavement I have noticed increased cobwebs in my left eye. Did I dislodge the blood clot which is sticking out of my retina? Trying to kill a mosquito was challenging with the extra floaties….I think I was swinging at a lot of “empty mosquitoes”.
I harvested my first crop of tomatoes from Amy…..yummy in the tummy. Amy is very tall, growing lots of arms, and is very happy with the Fresno climate….I play music for her and talk to her 🙂 I feel very successful with my new skill 🙂
July 15, 2011
I was a bookworm studying in a cocoon for this national certified rehabilitation exam….I took the test today…..Phew!
It was a 6 hour exam….it was very difficult to sustain my attention and focus. I feel like a steamroller squished my head, and then went back over it and squished it more.
Overall impression….I think I did okay. I struggled with some questions, I knew some questions, and the ones I did not know I took my most educated guess.
I hope I pass. This exam serves as culminating experience for my degree and professional credentials…..
I may preliminarily know the “unofficial” results in August…..I promise to keep you posted 🙂 Think good thoughts!
And, if anyone knows a good pillow fluffer….my head could use some fluffing 😉
July 19, 2011
Wow! I randomly ran into my boss, that I worked for at the time of injury, while at a little bakery in Fresno. 🙂 It was wonderful to catch up with him and his wife. 🙂 I had not seen them for about 2 years!
July 21, 2011
Hope springs eternal! I had my annual visual field test for my constraint vision therapy contact lens experiment. I have showed some good improvement 🙂 However, I cannot present sound evidence, yet. Same time next year, with similar or better results, I will have confidence to present my findings that may be acceptable to the scientific community 🙂 Never say never….there are possibilities for improvement despite the scientific/medical prognosis. 🙂
I also had 700 units of Botox injected in my affected side to control spasticity and those typical stroke survivor flexor synergies….patiently waiting for the Botox to set and work its magic 🙂
July 22, 2011
I had a wonderful day catching up with some friends. Then, I took a trip to visit my therapists and nurses from Alta Bates acute inpatient rehab 🙂 It felt amazing to walk those hallways, hug and thank everyone. They believed in me and were amazed with how well I turned out! Going from half-paralyzed with a grip of souvenirs to where I am today really validated what they do. Jaws dropped 😉
July 26, 2011
I may have foot surgery. I have developed a “neurologically classic equinovarus “, claw foot, on my affected foot as a byproduct of spasticity. Claw foot is: a high arched foot, clawed/curled toes, inability to place heel down, supination, inversion. All of these impact my ability to gain proper gait and result in hyper extending my knee and walking on the side of my foot. It was very neat to see the effects in my x-rays.
The proposed surgery is a “tendon transfer”. Transferring the contracted spastic tendons that invert and curl and reattaching them to the other side of my foot so that I can get dorsi-flexion and eversion. In addition, they will fuse my big and 2nd toe. Recovery time is huge. All my hard work in physical therapy made me an ideal candidate for the surgery.
July 30, 2011
Here are some photos from my trip to Alta Bates on 7/22 🙂
July 31, 2011
I use a shopping carrier to carry my groceries. It attacked me and pinned me to the sidewalk! I struggled to get it off my left side. Although I was finally able to break free and get vertical, a Good Samaritan pulled over and offered assistance. I am a bit scuffed up and my left shoulder does not seem quite right but, I am okay.
August 10, 2011
Working really hard at my internship. Fresno is warm, I am exhausted, and then school starts shortly; meaning internship + classes, and physical therapy. I feel like napping.
August 13, 2011
I took the bus and train to meet my best friend from 5th grade, and her husband. They are visiting from Europe. We visited a zoo with rescued animals, ate Mexican food, and best of all…regressed in age 😉
She played the cello for me when I was in the hospital and brought hot cookies. I wanted to clap after her performance but, at the time, my left side was not very cooperative.
August 15, 2011
4 years ago today, my life abruptly changed when my aneurysm ruptured in the afternoon. The last thing I heard was the siren, I fell into respiratory arrest and a deep coma. I am paying homage to my hemorrhage and reflecting on my journey and the people who helped along the way. What an aneu life and what an aneu gal 🙂
August 20, 2011
I am super excited & happy! 🙂 I got word that I passed the big exam I took in July 🙂 That means once my degree is conferred I will have a national certification as a rehabilitation counselor 🙂
August 21, 2011
I just filled out my application to graduate with a M.S. in Rehabilitation Counseling 🙂 I need to file with the University tomorrow…I really wish they were open today 😉
August 23, 2011
It is the first week of school. I considered taking an additional class which was a wonderful idea in concept. It took me 3 days to evaluate my current class load, internship, physical therapy, potential surgery and realized I did not have “extra” time to take a professionally interesting, but unneeded class. My logic is still slow….and, I am still impulsive….
Ironing clothes takes me forever and it still look like a cow chewed on me a bit, except with extra crisp wrinkles. I think I will have to get internship clothes that look good without ironing?
August 26, 2011
My tendon transfer/toe fusion surgery is scheduled for November. It is a 6 hour surgery, with 3 day hospital stay….I foresee orange jello in my future 🙂 Two weeks of no weight bearing. Six weeks partial weight bearing, as tolerated. Six weeks of a walking cast cam boot.
The theory of the surgery is to stop fighting spasticity and use it to my advantage by re-routing for the purpose of dorsi-flexion and eversion, rather than foot drop and equinovarus deformity…..it is worth a try since I have have diligently worked in physical therapy over 4 years, tried Botox and various other remedies to fight the spasticity.
“If you cannot beat them. Join them!” 😉
August 27, 2011
Really had a difficult time walking this morning….very uncoordinated….this is really puzzling to me? I pushed myself to do my exercises at the gym…some improvement, but it did not last long. What is up?
At the bookstore, yesterday, I tripped and fell going up the stairs and bonked my knees and palms. Thankfully it was not a trip and fall down the stairs!
August 31, 2011
I learned from one of our peeps that the American Academy of Neurology is calling out for 5 minute videos for the 2012 Neuro Film Festival. Deadline to enter is 1/31/12. Grand prize is very tempting. Have fun filming 🙂
September 2, 2011
Holy Moly! I had a wonderful conversation with the person who called 911 for me (not once, but twice….this is brand new information!). We had generally talked about the events the day my aneurysm ruptured. Today, we discussed in greater detail for the first time. I am completely blown away by what I learned from their recount of what occurred. Wow, cannot even describe it….
Earlier, I went to a Cine-Culture Club event on campus. Free cultural/foreign movies with discussion….it was neat to do something different because I am always so focused on school, internship, physical therapy, home exercises, and daily living activities.
September 10, 2011
I had a few appointments at UCSF, internship,physical therapy, and school. I feel really drained and exhausted. I guess a good thing is that the occular-orbit specialist, a.k.a. the eye socket doctor, cannot explain why my right eye feels like it is getting scooped out by a meat hook….but, gave me some home remedies, like hot compresses and eye drops to see if that would help the pain….I hope a remedy this simple works!
September 13, 2011
Bleh, I acquired a little stomach bug and feel like there is a squirrel living in my gut. Result: increased spastcity, fatigue, and it really hurts my head to hurl….but, I am on the mend.
September 14, 2011
Thankfully the squirrel has almost left my gut. I am really fatigued from that and catching up from a weekend class, in addition to my usual weekly activities…may you please donate a nap to me? 😉
September 16, 2011
I had an exhausting week leaving me not optimally functioning. Like, I continued to trip over my affected foot…. I body slammed this gal into the doorway….If it were witnessed, I do not know if I was 100% at fault but, I still felt terrible.
I have my first exam of the semester next week and already wrote a 7 page paper. whoa!
September 24, 2011
I had a whirlwind visit with Alycyn and her son….they made a special pit stop on their road trip. Last time I saw them was 2 1/2 years ago on my 30 day “Traveling Aneu” train trip when Eric was still in the incubator…a toddler and a good friend is the best therapy ever! Eric has a great smile…maybe next time I see him he will share it with the camera so you can see it, too 🙂
October 1, 2011
I nearly bit it hard on the treadmill…at least I did not fall all the way and get shot off the end of it 😉 I felt like I was on the 3 Stooges…I think I heard sound effects… A friendly reminder that recovery from brain injury is not a straight road… I hope I get back in my groove soon.
September 27, 2011
As an outside observer, it may be funny? I am accumulating some injuries….so much so, it could be a comedy? I went to grab something off the floor and hit my left forehead really hard on the desk…it sounded really loud, really hurt….no bruise…
I grabbed something out of the oven to put on my plate….unassisted, my left hand did not stay where I last left it and it grazed the oven door, burning my knuckles.
I tripped and fell on the floor during a wardrobe incident.
Lately, I have been walking into a lot of walls, corners, door jams, etc….
I have not sewn in a little over 4 years. I was trying to sew a button back on my shirt….limited sensation in my fingers, uncoordinated fine motor skills…. depth perception was really off so I got my eye closer to what I was doing, and the needle nearly got my eye! It got my finger a few times. It took me forever, some minor injuries….but, I did it!
October 9, 2011
Eek! A mouse found my apartment 😐 I tried using a broom to sweep it out, or at least to daze it so I could capture it in a container. Brilliant idea! Execution of plan….very uncoordinated, slow response time from brain to movement, vision…and, a very quick little mouse. At least I know sheep herding or school teacher is probably not a good idea 😉
An awesome friend took me to brunch and got a mouse motel for my guest 🙂
October 10, 2011
I woke up to 3 mice living in my mouse motel! They were super cute all huddled together. I released them outside….spent a lot of time cleaning.
My friend took me to the dentist to get my two rough chipped teeth smoothed out from my sidewalk/face encounter back in May. My teeth feel wonderful and no longer aggravate the exit wound in my lip 🙂 Lots of smiles 🙂
October 15, 2011
My affected scapula, affected neck, unaffected low back, knee, hip have been very sore. I went to the gym and had an epiphany while slowly walking on the treadmill…
I throw myself forward, push myself hard, and I think my lights are outshooting my car 😉 Pushing myself into compensatory strategies to get “it” done.
Like the tortoise and the hare…slow and steady wins the race 🙂 I decided to change my strategy. Go back to the basics, try really hard for quality, over speed and quantity. Then, build from there.
Taking the old adage that as we get older, time goes more quickly….I will get faster before you know it 😉
Slow and Steady, purposeful, quality 🙂 I have used this strategy for 5 hours already. I like it!
October 17, 2011
I am lucky to get individualized therapy at the Gait Balance Mobility Clinic (GBMC) before my surgery. They squeezed me in 🙂 Results from base-line tests indicate a definite decline in balance, explanations for falls….
My remaining vision is primarily what I use for balance.
We developed some short term goals…
October 21, 2011
I had my quarterly botox injections to control spasticity. Absolutely no wrinkles on the left side of my body 😉
I shared with my neurologist and one of my favorite PT’s from Alta Bates, my exploration into the tendon transfer/toe fusion surgery (that was scheduled for 11/23).
I postponed the surgery. I will try a less invasive solution…aneu ankle foot orthotic (afo) with the massive amounts of botox. I have done each separate, but not both together. Plus with my aneu “taking it slow and purposeful” approach, I think this might lead somewhere?
After really thinking that the surgery was a mechanical “fix” to a non-mechanical problem, and knowing I could always decide later to do both, or just the toe fusion surgery…I am off the surgery table 😉
I get fitted for the afo in a couple weeks…exciting stuff.
October 23, 2011
In anticipation of my M.S. degree, I applied for a vocational rehabilitation counselor position 🙂 I am super excited and hope that I will be considered.
October 24, 2011
I was surprised to find my sock a little bloody when I took my shoe off. My pinky toe was slightly injured…my PT thought it looked like I stubbed it. When and how? I do not know
Physical therapy was great. I got a lot of magic results in my affected leg from PNF (proprioceptive neuromuscular function). I hope the magic stays for a while 🙂
October 29, 2011
I have bruising and swelling below my ankle and on my 5th metatarsal of affected foot. I cannot remember how I acquired that. My pinky toe is healing, yay! I bought a 1/2″ heel lift to place in the shoe of my unaffected foot to promote easier “swing through” phase of gait with better toe clearance. So far so good 🙂
November 5, 2011
I was fit for an afo. It should be ready in a month. It is knee high, metal, attaches to the shoe…kind of reminds me a little of Forrest Gump…perhaps down the road, it will fall off as I begin to run? 😉
Since my toes curl on my affected foot, I get really bad ingrown toenails…a nice pedicure does wonders 🙂
Had an awesome chiropractor appointment. I think I have my head back on my neck. I tend to curl my head to the left a lot.
November 11, 2011
After volunteering in the Emergency Room, we went out for Chinese food. In serving myself, I pushed a mound of food on the left side of the dish…oh well, it was still tasty, even off the table 😉
November 15, 2011
I turned in my last significant paper for graduate school 🙂 As I turn in each remaining assignment, I get really exhausted. Only 4 weeks to go. Wow.
November 18, 2011
I met up with a professor…he mentioned my speech really improved and I sounded more normal 🙂 Yay! Then, he wanted to know my secret to improvement. (shh….the secret is keep trying and do not give up…determination + optimism).
Less than a month left of school. I am starting to feel accomplished about getting a Master’s degree post injury. A lot of very hard work.
November 24, 2011
Thankfulness is way deeper after surviving. Wishing you all a WONDERFUL Thanksgiving! 🙂
December 2, 2011
Completed one class today. One more class to go! 🙂 Finishing up my volunteer work. Wishing my peer colleagues well on the next phase. For this Aneu Gal, my graduate school chapter is coming to a close….what shall happen next? Keep you posted as it rolls out! 😉
December 8, 2011
I was diagnosed with phantom pain behind my right eye which explains the meat-hook trying to pluck out my eye feeling.
I got my new ankle foot orthotic (afo), a.k.a. “my Forrest Gump” 😉 . I am getting used to it, my foot feels weird not walking on its side anymore, and different muscles are engaging in my thigh. Someone commented my walking looks better but, now I walk like a cowboy 😉 For having limited sensation on my affected side, my leg aches and my foot hurts. I guess I need to get used to the afo slowly. Here are pics:
December 15, 2011
Done! 🙂 4 years and 4 months to the day… I completed all the coursework for my Master’s Degree. I feel a mix of emotion…between a Rock Star leaving the stage after a good performance….to disbelief. I have to wait for the University to officially post my degree.
Next Chapter….I jump on a train to visit my sister and nephew 🙂
Then, career finding…then? I am in a pretty exciting place 🙂
December 23, 2011
Hello from Santa Fe! 🙂
December 26, 2011
My 6 year old nephew is the best therapy ever! An enriching environment is just what my brain needs for further healing and improvements. Lots of activities and napping 🙂 Visiting my sister is a great way to decompress after graduate school….
…The final score: 64 units, 4.0 GPA
I am (im)patiently waiting for my hard earned degree to post…
Aneu Day 2012
January 1, 2012
After a relaxing and healthy day, I watched the first beautiful Santa Fe sunset of 2012.
2012 will be an exciting year with many possibilities. I heard the best quote at last night’s dinner…”Forgiveness is giving up all hope of having a different past.” Think about it…pretty cool 🙂
I am working on a secret project…I am totally excited 🙂 I hope to share it with you very soon 🙂 I leave Santa Fe on a train tomorrow. I had a great two weeks of relaxing after graduate school and visiting with my sister and nephew.
Happy Aneu Year 😉 , my Peeps. Hoping 2012 brings you opportunity and success 🙂
January 6, 2012
I completed a lot since my last post…I returned to California via train, entered a neuro film festival, moved out of my apartment, relocated, attended an aneurysm/avm support group, and had lunch with a friend. I am running on fumes and gravity propelling me. Super exhausted.
At the LA train station a person with a large backpack turned around and knocked me down. Thankfully a bench was close and broke my fall. She continued walking and did not realize she hit me. Maybe she has hemianopia and sensory input challenges?…or, she was completely not paying attention.
I invite you to view the video I created with an incredibly dedicated and enthusiastic team and submitted to the Neuro Film Festival:
🙂 Enjoy! 🙂
January 12, 2012
I am beginning to think the washing machine sock gnome is now living with me and expanding his inventory to include a credit card and keys. Part of my recent ability to misplace things I touch is grounded in feeling very unsettled from the move. It is very true that routine and organization is important for better functioning, especially after a brain injury. Watch out for the washing machine sock gnome! 😉
January 16, 2012
My biggest fear in the kitchen was 70% actualized today. 😦 Normally, if I cannot cut the food with scissors, or bite it with my teeth…it plain and simply will not be cut…because of my fear…
…My fear is using a knife and adding my affected hand for extra pressure and to hold the item while I am cutting it would result in chopped off fingertips on my affected hand due to curling fingers from spasticity and not seeing, feeling, or coordinating the action properly.
I cut one fingertip and nicked another without realizing. The only thing that stopped me from cutting more was confusion…”why won’t the knife go down anymore?” Because your finger is under it!
I cleaned the cut and crazy glued it back together.
I hope my coconut macaroons turn out good 🙂
January 17, 2012
I am official! 🙂 My Master’s degree posted today 🙂
BTW, the coconut macaroons taste pretty good despite the knife and direction following incidents. 🙂
January 20, 2012
I would like to think I fell gracefully and got up stoically. I am in a lot of pain. It did not seem like there was a 6″ step (optical illusion?). I fell and hit my lumbar, probably right at L-4 or L-5, scraped my hand, hurt my shoulder and foot. A nice man kept asking if I was alright.
I am thankful I did not tear my outfit. I was on my way to visit an office that I am interested in working at.
Hours later, I am very achy and my arm feels heavy and slow.
January 23, 2012
My chiropractor put me back together 🙂 Still a bit sore but, here is the tally: I hit my sacrum 4 & 5, easy to find with a welty purple/green bruise, jammed my thumb and thumbpad, knocked my pelvis, neck, and scapula/shoulder out of alignment. Overall I have a nice collection of bruises, but am on the mend!
January 27, 2012
I stood in front of the up escalator, trying to figure out how to time getting on it? I was successful 🙂 The commuters were less than pleased with the length of my performance. Up escalators trouble me. I de-escalate perfectly. 😉
I had 700 units of Botox injected into my left side to control spasticity. Since Botox is an art and a science, we upped the amount injected in some areas, and decreased in others.
February 2. 2012
I watched the 101 other films entered into the neuro film festival. One of my physical therapists said that she loved her job because she got to see miracles everyday. Watching these entries kind of made me feel that way, too. There were some pretty amazing stories.
I found my ideal job and wanted to apply. The vacancy stated driver’s license REQUIRED. I spoke with HR about the essential function of the job being the ability to travel (i.e. get somewhere), or the ability to have a driver’s license. After the conversation, I decided this was not the right opportunity.
February 7, 2012
I am a work in progress 🙂 Today I worked with my orthotist/prosthetist and got my aneu afo adjusted. I am getting used to the adjustments and think I grew aneu muscle in my glutes…..maybe the muscle was there, but it was on vacation?
When I returned, I received my Certified Rehabilitation Counselor (CRC) certification in the mail. YES!! Woohoo Now that I have all my acronyms, the career finding begins! 🙂 I had concern that I was losing the momentum I built while in graduate school.
February 10, 2012
Public People’s Choice Award voting opened for the “2012 Neuro Film Festival”. Please consider voting for my film “Aneu Gal” that my friend Clara and I created.
How to vote:
2) Click on “Vote Now”
3) Register. You will be sent an email to activate your registration. Open that email. Log in.
4) Scroll down a bit and VOTE for my film “Aneu Gal”.
Please vote before 3/8/2012.
🙂 Thank you for your support! 🙂
February 14, 2012
This Valentine’s Day, remember to recognize and love the progress that you, or a loved one made in recovering. 🙂
I saw the best quote. Life is not about how to survive the storm but, learning to dance in the rain.
Dance, love, and remember to smile and laugh 🙂
February 15, 2012
I joined the gym for an encouraging environment for my home exercise program. I added walking backwards, very slowly, on the treadmill. It was a PT approved activity. It is almost like walking into an elevator and staring at the back wall. People think I am kind of goofy 😉
My job search has a lot of exciting potential. Looking for work is a lot of work.
February 22, 2012
I had a medically interesting day. My neuro-opthamologist diagnosed and created a solution for my double vision episodes. It is a “quick” fix of placing a small prism in my glasses. I cannot wait to try it out!
Then I went to urgent care after 5 days of the stomach flu or food poisoning. They tried to draw blood and my veins kept running away. Urgent care sent me to the ER. I was given 4 liters of saline to rehydrate me…and two cups of orange jello. The saline and the jello perked me up…I feel like I can run a mile, or at least wherever my veins ran away to. 😉
February 29, 2012
I grew! 🙂 I am a solid 5’8″ Since my injury, I have grown an inch and 3/4. Who knew brain injury had a souvenir of growing taller? 🙂 and stronger! Drink plenty of water, get a little filtered sunlight, nourish yourself with good nutrients and grow! How cool!
March 3, 2012
🙂 The funniest thing happens when I type one-handed on the computer and cannot find the word I am looking for, but it is right there at the top of my head…
…I use my unaffected/typing hand to grab the air near my brain…starting with my index finger, sequentially using each finger, down to a squeezed fist…open hand and repeat. 😉 Usually after 3 to 4 grabs, I get the word! Smiling and laughing out loud 🙂
Enjoy “hand grabbing” the words out of your brain 😉
March 7, 2012
I took a stretching class today. I feel like a tightly shut clam. I elicited a lot clonus in the stretches and tried to follow the teacher as best I could. The after effect of stretching kind of felt good. I think I will try the class a few more times to see?
March 11, 2012
I went to a popular walking spot and took a few rest stops to catch my breath and stretch my shoulder, flank, arm, hand and leg. I totally got a kick watching all the happy dogs…and an even bigger kick out of seeing the resemblance between the dogs and their peeps. 🙂 It is great to be easily amused! 🙂
March 15, 2012
Aneu step in my recovery! 🙂 …upon results from an EEG that indicated slow brain waves (the medical term for brain damage) and a detailed discussion with doctors at the UCSF Epilepsy Center…I will titrate off my anti-seizure medication. This is super exciting! 🙂
We tried no seizure meds about 6 months after injury/surgery and I had an “incident” with consciousness that got me back on meds. We figured much more brain healing happened in four years and it is worth trying since I have side effects from the meds and do not drive. I have an increased risk of seizure because of my medical history, but I am willing to take the risk.
A funny thing happened at my stretching class…I was on my back, legs up in the air, when I opened my legs to stretch my inner thighs our instructor had us move our ankles in circles. I could not do it with my affected side…no circles happened. I thought really hard to try and make my ankle circle…one of these days, maybe I will regrow that wire?
March 20, 2012
I was tested in an impromptu Spanish conversation quiz…I was able to remedially converse with a lot of difficulty. I had not really spoken Spanish since my injury and before the injury, I could speak enough of it to get by. Maybe brushing up on my Spanish skills would be fun?
March 22, 2012
“Clean as a whistle!” 🙂 the words I heard from my neurosurgeon following my Angiogram (Arteriogram) to see if there were any new aneurysms, or complications from the clipped ones….I felt going into this diagnostic testing that it was a formality, rather than a concern. When is my next follow-up? in 10YEARS! Woohoo! 🙂
The Angiogram was under sedation, with a catheter fed up my femoral artery to my neck to inject contrast dye to visualize the outlines of the blood vessels in my noggin. I had 5 hours of prep and procedure time, then, 6 hours in the recovery room.
March 29, 2012
🙂 I am back in physical therapy and it feels great! 🙂 One of my favorite therapists from the acute in-patient hospital opened up her practice called “Neuro Wellness” in Berkeley.
My brain is highly trainable and likes challenge. My biggest PT goal is to keep the PT afterglow forever! 🙂 Unlearn bad habits, Relearn how to do it correctly, Practice, Repeat, Repeat, Repeat…drive new neuro pathways! Drive, drive, drive 🙂
April 2, 2012
I had my 1st consultation with the UCSF Osher Center for Integrative Medicine. I am super excited about treatment options which include acupuncture, massage, and manual manipulation.
I have homework and research to complete before my next visit. 🙂 I might look into taking very basic Tai Chi or a beginner Mudra Indian dancing with the those very fluid expressive hand movements…
I tried doing Tai Chi in my wheelchair at the rehabilitation hospital. Maybe it is time to try it again? 🙂
April 5, 2012
I was fascinated by watching brain surgery video, facilitated by my neurosurgeon, at the aneurysm/avm support group meeting.
The coveted poster! 🙂 When on the neuro floor after ICU, someone described to me the “Germs Travel” poster as I was picking at my scar. Germs travel in your fingernails!, I was told…. Anyone who would visit, I, like any 5 year old would, demand they steal the poster for me because I thought it was perfect, cute, and remind me to not pick at my head… this was right after my brilliant comment of “put the balloon on my nose so I will play with that instead of pulling out my feeding tube”….
The short story, no one stole the poster for me. I visited my nurses today, and I got to photograph the poster! My life is now complete! 😉 See it is the perfect poster! and now you have it, too 🙂
April 6, 2012
I took a walk using some elements of the new form of walking I am learning in physical therapy. I discovered “aneu” muscle in my left glute (butt-cheek). Ouch, it hurts a lot and I am hobbling around and can barely walk….I might even bust out my cane! Ouch….
Even though it hurts, I am really excited about discovering this muscle….this is hope for more normal patterns in walking 🙂
April 10, 2012
I took my first Tai Chi lesson last night. I focused a lot and moved with intention. I think I let the “cloud in my hands” get away…now it is raining! 😉 I am glad it was a small class. I had trouble with sequencing. I was tired at the end but, look forward to next week’s class. I feel this might be helpful for my proprioceptiveness (where I am in space).
April 19, 2012
At my 2nd Tai Chi class, the instructor commented how much I improved since the 1st class. I totally agree! 🙂 After class, my left extremities felt more connected to me.
April 21, 2012
🙂 I was appreciated for my voluntary service at a luncheon 🙂 I spent some time with my friend from graduate school. It was nice catching up with my former graduate school life on a warm California day.
April 26, 2012
Had my quarterly Botox injections for spasticity, 700 units. My physical therapist wanted to be sure we added a new muscle, which means we had to take away from somewhere else since I am at the upper limit of dosage. It is an art and a lot of math.
I also had my afo adjusted, which now has the Walk Aide as part of it. I am medically fascinating 😉
May 4, 2012
In honor and celebration of May as National Stroke Awareness month, I was invited to speak at the Stroke Conference at Gundersen Lutheran Hospital in LaCrosse, Wisconsin. I shared experiencing a stroke from my eyes for an audience of doctors, nurses, therapists and hospital personnel. LaCrosse is beautiful. In my tour of the hospital, I learned they provide a continuum of care….a one-stop-shop for your total stroke care certainly has its advantages.
May 6, 2012
I walked for Aneurysm and AVM awareness in San Francisco. It was a gorgeous and purposeful day!
May 16, 2012
I got “aneu” functional assistive device…my physical therapist had my shoe built up about 1/2 inch on the side I roll my foot on to try to train my foot to land differently. Seems cool so far.
May 17, 2012
I had an acupuncture appointment to awaken my body’s healing resources for minimizing my souvenirs. Awaken 🙂
May 22, 2012
I lectured to the 1st year medical students at UCSF Medical School. It is great to share my story, recovery and words of wisdom with the future doctors of America.
May 24, 2012
Today, I embark on an aneu ginormous journey! 🙂
I accepted full-time competitive employment in Washington DC. No more Social Security Disability for this Gal. Yes! 🙂 Even with my souvenirs, I am going to do everything I can to be and stay a working gal. All this enormously hard work resulted in something totally unimaginable at outset…but, I did it 🙂 …I got my dream job. Whew! 🙂
May 27, 2012
I am tackling my to do list for the move and have had a yucky headache over the past couple days. Very busy, and making progress…
June 1, 2012
I begin work on the 18th and have accomplished great feats since my job offer on the 24th. I secured an apartment, got movers who will deliver before I start work, purchased needed stuff, and packed.
😦 Sadly, I had my 1st Gran Mal seizure last night as my friend dropped me off at home. 😦 I know that scared her 1/2 to death. The only thing I remember was my mouth opening with tenseness, my head sharply turning, and my eye rolling back behind my head. When the ambulance arrived, they asked me if I knew who I was and my birth date. I could not answer them and blankly looked at them. Nor could I tell them what day it was. I spent the evening in the ER. I am now back on anti-seizure medication.
I tried scheduling an appointment with a neurologist in DC before I started work, and they did not have an opening until mid-August. I really wanted to set up services before I started work…
After doing so well and with so much to look forward to I feel disappointed, since I continually try to get better and aim for normalcy…
June 3, 2012
The movers left with my stuff yesterday. 🙂 I fly out the 11th. I feel exhausted from working at 300% to get things done and from the seizure…but, I feel okay.
June 5, 2012
I am so glad I built in time to decompress on the West Coast and a week on the East Coast before my first day on the job…
June 8, 2012
My fantastic A-Team at UCSF saw me today for my lingering postictal symptoms….fancy word for post-seizure. No new lesions. 🙂 Probably just some bruising that needs to heal… They wished me the very best on my move. 🙂
June 11, 2012
I am moving to Washington DC today 🙂 🙂 I wonder when I will actually realize that this is real? Tomorrow, I will be a resident, WOW! 🙂
June 12, 2012
This is amazing and bewildering. Trying to take care of all the things that come with relocating. I took a tour to get a little acquainted. The first sight I saw were the bells of US Congress in the Old Post Office which stand for Courage, Liberty, and Love….I felt these three words symbolize me. 😉
June 16, 2012
I am an official resident of Washington DC! I established the essentials…food, shelter, transportation, id card, internet 🙂 The rest of the unpacking can roll out in time. I begin working on Monday…one day of rest!
June 18, 2012
I am exhausted and feeling encouraged after my first day at work. I filled out a lot of paperwork, met a lot of people, and need to remember a lot of things. Survey says=”good day” 😉
June 22, 2012
🙂 I completed my first week at work 🙂 and treated myself to chai after a week well done. 🙂 Each day, I try to incorporate something for me, even if it is a 15 minute walk backwards on the treadmill 😉 I hope to explore my neighborhood, the city a little bit and develop a grocery shopping and laundry routine.
I received a lovely lucky bamboo house warming from one of our Peeps. “Thank you!” We Peeps are the lucky ones…never forget that.
I think my word filter is still impacted 😉 New people I meet in the elevator of my building, I introduce myself and say I’m new and inquire what they are carrying and where they got it.
I will try my best everyday and give this aneu journey everything I got!
June 29, 2012
Completed week 2! 🙂 I accomplished a lot in a short amount of time. My body and brain are really trying to adapt to a full-time work schedule. Thankfully, I do not invest much time in commuting. I am trying to cut myself slack on items that any normal person would encounter when relocating, like feeling perpetually lost….but, I am starting to make a little sense of my aneu world. I think I will try riding the bus and check out my neighborhood…knowing the bus has to return to where it picked me up is reassuring 😉
July 1, 2012
Funny? You decide.
I did not realize my sock came off my foot when vacuuming…Guess who found it?
After the vacuum cooled down, everything was okay. Yes, it was funny! 🙂 Note to self…do not vacuum with socks on!
I am surviving the Washington DC storms and this heat wave.
July 4, 2012
What does freedom look like for you? For me, I would like my movement to be like my belly button (explanation: you know it’s there and does not require much thought). 😉
I avoided crowds and the metro but, I walked 10 minutes from my apartment and saw really amazing fireworks. Happy Freedom!
July 6, 2012
I received my first paycheck 🙂 This is real. 🙂 I cheated death, beat the odds and prognoses, relearned many things to function as normal as possible, moved across the country and got a full-time job. Even with my lingering souvenirs, I am truly in awe with where I am now from where I was. This is cool. 🙂
July 11, 2012
I am so very thankful I had many months of voluntary service, plus an internship with the company I work for. I feel much more prepared and aware of the big picture. Do not get me wrong, I still have a HUGE learning curve and feel like a bug on a windshield. My endurance wants to be there but it is not, and I leave work exhausted. After a distraction it is hard to refocus quickly, almost like a short-term memory thing? I am trying my best and hope this works.
Off to do free meditation yoga at my neighborhood library 🙂
July 16, 2012
I got miserably lost walking by DuPont Circle. I even had a map! As I tried to find the bus stop to take me back, I somehow ended up in my neighborhood? I am still scratching my head on this one. I hope to one day report that I conquered the Circle and found the shop I was looking for….stay tuned…
July 18, 2012
🙂 Today marks my first month at my aneu job! 🙂
July 22, 2012
I had a couple domestic challenges that resulted with a sewing needle puncture on my lip and an iron burn… The lip incident happened because I use my teeth to compensate for some fine motor function. Thing is, remember last year when I fell and hit my head on the sidewalk, chipping my teeth through my lip?…the sewing needle hit the same exact spot on my lip!
July 25, 2012
I had my first doctor appointment at Georgetown. It was an evaluation for Botox injections for spasticity. It seems that I will likely stay on schedule to receive my next injections soon, which is a sigh of relief because the “magic” is wearing off.
I did not like taking time off work to do this because I am so new on the job and I am trying to make the best impression. Plus, I need to ask for another partial day off for the injections, and I have another appointment with neurology mid-August that I already asked for time off.
(I arrived to work early and stayed late…)
July 29, 2012
I had a walking malfunction and ended up sprawled on hallway rug of my apartment building. Yauzers, rug burns hurt! I ended up with four of them, each oozing pus. 😦 At least nothing worse happened, and I still have all my teeth. 😉 Interestingly, I fell so quick that my left side did not engage to brace myself. Thankfully, none of my neighbors saw my fall.
August 5, 2012
I was tying my shoelace and I had an operator error…I tied my right shoe to my left shoe! At least my left shoe was not on my foot, yet! I expended a lot of energy this past week and it manifested in things like the “shoelace incident”, the vacuum cord around the left leg, etc. Anyone up for a 3-legged race? 😉
August 8, 2012
Do not follow that Gal 😉 I am attending training offsite and on my return trip I kept on jumping on the wrong metro train! I would regroup, look at the map and plan my next train…then on the platform, I would think I figured it out wrong… I guess part of learning where I am, is not knowing?
August 11, 2012
Since returning to work, and particularly in the last two weeks, I have developed and maintained a gnawing “wasabi”, with undertones of “brain freeze” headache. It is very uncomfortable and I try my best to suck it up and carry on, although I get a little teary.
I woke up feeling nostalgic this morning and took the bus to Union Station. How was I to know when on my 30 day train trip in early 2009, that I would end up living and working in Washington DC? Life is unpredictable. Let it evolve and enjoy the journey. 🙂
I invite you to review my photos from that train trip located on the Travelin’ Aneu link to the right. Enjoy the journey!
August 15, 2012
I turned 5 years old today…(that is, 5 years post injury). Many successes and challenges but, I am here with souvenirs and making the best of the aneu me. 🙂 Happy Birthday to me!
August 17, 2012
I have the placebo effect, yeah! I was overdue for my Botox injections for spasticity…and today I received 700 units with a new injector. I am developing my medical team here. Today’s injections went well. I treated myself to a chai tea and a baked good that resembled a S’more afterward…I guess that is the “grown ups” version of a lollipop after a doctor’s appointment? Remember I am a 5 year old trapped in an adult woman’s body 😉
August 24, 2012
“I am SO sorry!” I profusely apologized to the solid garbage can affixed to the sidewalk.
Then, I am SO sorry to the people who live in the same apartment location two floors before me. I kept wondering why my key would not work? Because, that was not my apartment! Oops…I hope the apartment was empty or that I did not freak out the residents too much. Sorry…
August 31, 2012
I cannot think of the word to describe my emotion. I am sporting a minimally displaced nose fracture of both nasal bones after I walked into a cabinet… 😦
It happened at work. My office is closest to the front reception area. When the receptionist is away, fielding walk-ins is another contribution to the office. As I was assisting the walk-in and was going to to get something for them, I turned to my left, started to walk and face planted head on into a cabinet. I was shocked, startled, in pain, and my glasses were askew. A little blood.
September 4, 2012
I started reporting my wages to Social Security, because I get 9 months of a trial work period before my SSDI payments are adjusted. You would think reporting wages is easy…the few people I have worked with from Social Security seem like “reporting wages” is a foreign concept. Hullo? Reporting wages, trying to get off SSDI…help me here!
Any time you make over $720 on SSDI, it is considered a Trial Work month….you get 9 trial work months. Wish me success in my endeavor to get off Social Security Disability Insurance…I am trying!
September 13, 2012
My broken nose is improving…still a bit bruised but, most of the swelling went down.
Still working extremely hard…
Prepared a wage report document and sent it to Social Security…I am hopeful they and I will be on the same page. I heard that only .05% on SSDI or SSI will ever get off that….Soon I will be in that .05% I guess I am a slim chance and small percentage kinda Gal 😉
September 14, 2012
Before leaving work I got this strange sense that I was forgetting something really, really important. I blankly stared around my office for a clue…nothing.
Lately I acquired a dense numbness of half my face/lips, usually at the end of a very demanding day. This feeling is also accompanied by my leg not quite working correctly, sometimes a strange taste in my mouth and I wonder if I made any sense when I had a conversation with someone? This feeling passes after a nap or chilling with a cookie. I guess I used every ounce of energy and my brain is telling me to stop?
September 15, 2012
At the Zoo, an Orangutan stretched out on a hammock made eyes at me, smiled and combed his hair. He was a total cutie pie! 🙂
I was thinking that 5 years ago today I was half paralyzed, in a wheelchair, and cognitively really, really bad off…I had just gotten to the acute rehabilitation hospital and had seen my swollen scarred head and face for the first time.
Wow. And now I am in Washington DC trying my best to make it.
September 22, 2012
I tore the hem of my left pant leg with my afo. I was determined and spent 3 hours trying to sew it… had extreme difficulty with fine motor skills and vision difficulties. I felt all proud at one point until I realized I sewed part each side together with each other so my foot could not go through it! After redoing it, I think it passes the test?
September 30, 2012
I love all the free things to do here. Last night I went to a free performance at the baseball stadium..fun! 🙂
In an attempt to fluff my comforter really well, I slowly stood up on my bed. When I started fluffing, I ended up falling but, at least the wall (caught me?) (I guess it body slammed me?). After that, I figured I might fluff differently, or be happy with its lumpiness?
Earlier in the week I lost my balance and ended up with a badly bruised pinky toe on my unaffected side. 😦
October 2, 2012
I experienced some issues with my cognition which cast doubt on my abilities to perform at work and in living independently. I will continue to give my best and hope that it is good enough.
October 6, 2012
I got into a dressing predicament…I usually stabilize myself with my back on the wall when I pull my pant legs on…my foot, unknowingly got stuck and when I placed it down, it slid on the marble…down I went…trying so hard to unleash my inner SpiderWoman keep my back and arm on the wall to reduce the speed of my fall. Great thing, it worked! 🙂 However, I left some of my skin from my arm and back on the wall. Ouch 😦
Had my midpoint Botox injection check up. The results were pretty good so far. Some areas could use improvement, so I will be at about 835 units of Botox at my next injections…wow. I will break the ceiling of the amount of units injected for this doctor by 35. I guess you can say I am a leader in Neuroscience 😉
In other news, the episodic half numbing of my face, with strange taste in my mouth has lead to another EEG. My doctor wants to rule out pre-seizure activity.
On another note, I had a cupcake and coffee for breakfast, with a creative walk back to my apartment…the sidewalk stopped halfway home…think Mission Impossible, kind of 😉
October 20, 2012
I felt like a paver smushed me and it was difficult to roust myself out of bed for my tour of the Capitol. Followed by coffee and gelato! My work week was demanding and the last two nights I woke up at 2am, unable to fall back to sleep. yawn. I think a nap might be nice?
October 29, 2012
The “Frankenstorm” is beginning to hit Washington, DC. I am as prepared as I can be. I have food, money, clean underwear, a bathtub filled with clean water, a water filter, candles, matches, flashlights, and blankets.
Work is closed today and maybe tomorrow? I feel very drained. All the effort I invested in getting here and working caught up with me. I feel like I melted (of course not all the way because of spasticity 😉 ). I never would have thought to take a day off because I am trying so hard to make it but, I guess I really need the break.
October 30, 2012
I survived Hurricane Sandy, still have power, and enough supplies for a week! 🙂 My work is closed again. Today is the first day since I got here that my brain does not feel like it is about to bust through my skull. I guess I really needed some down time.
November 11, 2012
The Prez had the same idea as me…honoring our veterans past and present by visiting Arlington National Cemetery. I ended up seeing the outskirts and Iwo Jima since most of the Cemetery was off limits to the general public.
Tonight I must not sleep for a sleep deprived EEG tomorrow…good thing I took a really, really good nap! 🙂
November 13, 2012
I was informed that my EEG results were the same as last time. I met with another doctor who wants to get my baseline of functioning so I have upcoming tests, a scrip for a new med to help control nerve pain, and physical therapy! The first doc I met out here regurgitated that old myth of 6 months to a year for a window of opportunity…bleh…we have a lot of work to do! I strongly believe the PT will maximize my Botox results. yay! I am back in business.
November 22, 2012
Happy Thanksgiving! 🙂
I totally forgot to mention…I was diagnosed with Afferent Pupillary Defect the other day. Meaning that due to damage of my right optic nerve, my pupil does not constrict down as much as my left eye when exposed to bright light. 5 years later and getting new diagnoses…interesting.
November 15, 2012
I always feel humbled when a new doctor describes the severity of my injury when they review my ct scan…and their surprise that I am still here. I met with my new neuro-ophthalmologist who will work on refining my prisms to hopefully correct double vision which gets worse with fatigue. (btw, I am tired a lot with so many new things!).
Maybe when I upgrade to prisms ground into my glass lenses, rather than stick-on kind, there will be a difference in effectiveness?
November 25, 2012
I woke up with a super terrible headache. bleh. 😦 I debated what to do and eventually mustered enough from my reserves to push myself out of bed and painfully make it to the grocery store. Good thing they have sample coffee because I poured 3 little cups…the only reason why I teared myself away from the free sample coffee was because I created a bottleneck…apparently others were in need of sample coffee!
November 30, 2012
I won, I won! No, not the Powerball 😉 but, I was injected with 800 units of Botox to control spasticity and abnormal movement patterns called dystonia. I am medically interesting, like a textbook, and I am the top injection amount for my aneu injector. Botox is an art and a science. I cannot wait for the magic to settle in. 🙂 My Botox doctor is really refining the muscle areas we inject. One muscle was so tight, the needle could not get into it? Crazy but, true.
I was apprehensive leaving my medical team at UCSF. I am now developing a great team here in Washington, DC at Georgetown University Hospital.
December 7, 2012
The Botox is setting in quite nicely 🙂 However, my week was filled with a lot of struggle with my souvenirs. Not to mention a car nearly ran over me 😦
December 16, 2012
I had some out of the ordinary experiences at work which sucked my brain dry 😉 I am not joking. After leaving work and trying to cross the street I looked at the headlights and then startled myself after realizing they were no longer moving and I had stared at them so long I missed my turn to cross the street. A lot of thinking and writing caused pain and at a few points I was so saturated my brain stopped thinking.
We are having a door decorating thing going and I created something…not without ending up with glue and cotton balls on myself. 😉 I think I gave you enough information to guess what I made?
December 18, 2012
Can you believe it? Today marks six months at my job. I know, pretty unbelievable! 🙂 I had a physical therapy evaluation and we have some goals to maximize the effectiveness of Botox, along with a maintenance check to hopefully beef me up to where I was. Since I have so many new demands, I have deteriorated in some areas. The check engine light is on. Take me to the shop. 😉
December 27, 2012
December 31, 2012
Gravity was not my friend today 😦 Ended up tumbling in a walking malfunction. At least some nice man pulled his car over, got out, helped me up and asked if I was alright. Good news…nothing is broken! 🙂 The other news, my thumb is purple, swollen, and distorted looking. My hip has a big bruise, my shoulder feels impacted and I feel really sore. What a way to end 2012.
Aneu Day 2013
January 9, 2013
I had my first physical therapy appointment after work. I could chose different routes to get there and between traffic and the delay on metro I kept on trying and abandoning plans knowing I was too far away to make it on time. I hailed a taxi in a last ditch effort and oh my goodness I had to quell my outside voice of “Go Gadget, Go!” I was impressed and enthusiastic about this taxi driver’s maneuverability and speed. Yes! I made it with 2 minutes to spare. 🙂
I was a bit disappointed that we did not work on improving me based on my goals from the evaluation but instead, assessing the injuries from the latest fall which include a sprained lower back, very tender hip flexor, hip, scapula and my thumb is still purple. New facility, new PT and, I guess I have to get used to sharing my PT with another patient. I was a little perplexed of not having the undivided attention I am used to.
My friend created a beautiful pen and ink piece of art with her left hand (she is right handed). Left hand to right brain, the side of creativity. I feel inspired to draw with my left hand…this should be interesting.
Oh yeah…Happy New Year!
January 20, 2013
Guess which hand drew each heart?
Drawing with the left hand is tough! My fuddy-duddy fingers holding the pen…made me want to move the paper instead of my hand to draw! My artistic lefty goal is a palm tree.
Physical therapy is challenging me. I get stumped on how to coordinate movement. We are really working on reversing whole leg internal rotation starting from the hip and stretching out the neck, scapula, and back. No pain, no gain? I think I deserve a cupcake!
January 24, 2013
I started Speech Therapy to identify strategies to help me with work. It will be interesting to work on the priorities and peripheral parts of my job and finding ways to manage more effectively.
Physical Therapy had some very cool carryover today, especially for my neck/scapula hip, back, etc. When the therapist was massaging some of my really spastic areas, it felt like she was sticking her fingers into my bone marrow! It was so painful.
It is exhausting to also have therapy after work because I do not want to take frequent and noticeable time away from work. You know, because I want to seem as “normal” as possible. Aye. And, we had snow!
January 25, 2013
I kept saying inside my head “come on little wing, work”…referencing my left scapula/arm/shoulder….something I learned in physical therapy. Come on little wing, work 🙂
January 31, 2013
It was so pretty the other day that I decided to walk home via the pharmacy, something I did before. This time I got so lost that I had to sit down and figure out where I was in the map. A glass broke after slipping from my hand while washing it. I forgot to take my night medication and tossed and turned forever without sleeping. I am really exhausted.
February 2, 2013
I have had a very intense wall-stopping headache for about 2 days. I almost did not get out of bed. Oh, did I mention my left socks have toe curl holes in them? I guess with that statement I cannot claim my left shoe gnome is eating my sock 😉 At the end of the day, my sock is bunched up toward my toes. I guess I should try rubber bands to hold up my sock?
February 3, 2013
I woke up in a frenzy, “jumped” out of bed, “ran” around and decided what was essential. Why did I not set my alarm? Silly Gal, it is Sunday! lol 🙂
February 9, 2013
Oops, I did it again! I kept staring at the carpet as I walked to my apartment door. The carpet looked newer, different pattern, but something was amiss. Put my key in the door, jiggled the lock…It was the wrong floor! Once again, hope they were not home. Oops.
Common courtesy…if someone has frosting on their glasses, please let them know! I did not see it for a while because it was on the lower left side of my glasses….thanks, guys 😉 Yes, there was a hint of sarcasm there….
February 14, 2013
I got it in my head that if my crumpled second toe activated, I would fall less. My physical therapist did not promise anything but, we tried antagonistic electrical stimulation to try an break up the abnormal muscle firing patterns from spasticity. Just slap on huge electrodes on me and reboot my electrical system. After a round of treatment, my second toe kind of relaxed a little bit. Can you see my ideas percolating? Hmm…. ? hmm…
February 18, 2013
I had 8 hours of neuro-psychological testing today. It was exhausting and acquired a headache from the concentration. As I reflected on my performance, I felt very slow and not very smart. I look forward to the results in comparison to my 2009 testing.
In other news, the Physical Medicine Rehabilitation Doctor, the physiatrist, I though I found turned out to have her specialty in neuro-cognitive, not overall neurology and rehabilitation. I felt really frustrated after the appointment with her.
I am in need of an Orthotist to fix my afo and adjust my Walk Aide. I also am in need of an experienced and knowledgeable physiatrist to oversee my rehabilitation needs.
I do have a wonderful Movement Disorder Doctor at Georgetown who injects the Botox. 🙂 I am almost due for my next injections.
February 26, 2013
Strange, interesting and uh-oh? I tripped and fell on the pavement on my way to work this morning 😦 Scraped my knee and feeling a little battered. Funny how that “falls” on the heels of my physical therapist telling us we are on a break.
Last night my affected foot turned bright red for a while and was hot to the touch, interesting? Most of the time my foot is cold and a little bluish. Then, the other morning I woke up to my affected arm that was paralyzed and my left leg was pretty much affected by the same way. It was not like I slept funny and it took about 4 hours to return. The other day I had a super sharp piercing headache and then a couple brain stopping headaches before that. What the hey?
March 5, 2013
Yay! I got my next dosage of 800 units of Botox. I was in real need of it. We are refining the dosages and injection sites. I am officially a pin cushion 😉
March 6, 2013
Oooo, I experienced a minor catastrophe with Medicare and the designation of primary and secondary payer of benefits for my recent health procedures. I completely freaked out but, may have resolved it? Still freaking out a little.
Words of wisdom…ask lots of questions before signing up for health insurance coverage with your employer. Medicare will not pay the stop-loss of meeting the private insurance deductible, which means the MediCare supplemental policy will not cover it either…too much stress!
At least the “Snowquester” storm hit DC and I have the day to nurse my really achy head.
March 12, 2013
You would think that the more I walk and stand the better I would get at it…apparently not. Once again gravity was not my friend. At least the injuries were only minor this time! I was like a Macy Gray song 😉
March 16, 2013
The Botox is setting in nicely. 🙂 I got my neuro-psychological testing results back which showed slow cognitive processing as the top impairment, along with a few others which add up to some of the challenges I have described. These souvenirs are not really supported by the type of job I have and they provided some strategies to try… I will work on some with Speech Therapy and others with the Neuro Psychologist. Hopefully an outsider with a snapshot of the bigger picture can help me be more effective, or at least help me set up my work space to minimize distraction. I hope.
March 17, 2013
There are some benefits and disadvantages of being on the top floor…the elevator was not in service this morning 😦 I go grocery shopping early in the morning to avoid crowds and pick from the new produce and sample coffee. I made it to the store and my little rolly shopping cart helped me get them up the stairs. The ascent and descent was slow and filled with balance challenges. As I deliberated on whether to do laundry, I heard the ding of the elevator…back in business? I guess I should go do laundry…
March 25, 2013
Interesting. I am unable to have an Orthotist in Washington DC adjust my AFO so it does not squeak when I walk or make sure everything is okay with my Walk Aide. They claim for liability reasons, etc. A little frustrating. So, do I purchase new ones? (kind of really expensive) Or, fly and see my Orthotist who made them to adjust it? (seems kind of goofy to need to do that).
hmmm…what is this Gal to do?
March 29, 2013
I tried to delicately maneuver through the line of people with my cupcake and coffee on a little plate, like a serving tray, to get to a place where I could sit and devour. I lost my balance and heard some guy loudly say “hope your cupcake doesn’t have any more alcohol in it”…grrr…
April 1, 2013
My bus driver was heavy with the brake pedal on the crowded afternoon bus. I ended up head-butting some guy’s back when I lost my balance. Oops..sorry. Oh what a friendly smile and a meekly said “I’m sorry”. can do. 😉 At least I stayed mostly upright, white-knuckled bar-holding kind of trip… Thankfully, it was a shortish bus ride but, in traffic, the driver braked a lot!
April 7, 2013
Has Spring sprung? Yes! 🙂
April 16, 2013
Oops, I did it again…another theme song? I tripped and fell on my way to work and am feeling a little battered. I lost the battery to my Walk Aide in the tumble but, thankfully, a colleague found a battery to help me out. TLater when I tried to lift up my spirits with a warm cookie from a cafe across the street, a woman and I collided hard. She was on my left. I profusely apologized. On the upside, the cookie was yummy.
April 21, 2013
I tried a yoga class for beginners. I wonder if they have remedial yoga? 😉
May 5, 2013
The Aneurysm Awareness walk was today in San Francisco…I missed it but, photo uploads indicate fun is happening. Party on, my Peeps! 🙂
May 7, 2013
I fell out of bed when I tried to turn off my alarm clock and smacked the left side of my head on the bedside table and hip on the floor. Ouch… I have a dense headache, small goose egg, and feel battered. grumble, ouch. What a way to start the day!
May 15, 2013
I can tell the Botox for spasticity is starting to run out…
May 23, 2013
I had a whirlwind trip to San Francisco and saw my doctors, orthotist, spoke to the first year medical students at UCSF Medical School for the “Brain Mind Behavior” class and saw friends and family.
Compared to everything I had gained up to when I began work, the consensus among everyone I saw was that my overall function has declined… 😦 I knew it, and having it confirmed was truth in the pudding… My spasticity and dystonia has worsened which makes me a candidate for the baclofen pump…I am having small seizures… 😦
Keep tuned as my treatments roll out.
I did get my afo and Walk Aide adjusted. Yay! I do not squeak when I walk anymore 🙂 I still think it was kind of goofy to fly across the country to get that done. But, seeing my A Team at UCSF was comfort for my soul 🙂
May 24, 2013
🙂 Yes!!! My Social Security Disability payments stopped! I feel like I can sit at the big kids table now. 🙂 I am the .005% that actually gets off SSDI. This is pretty cool. I totally dig winning small percentages. 😉
May 27, 2013
The yoga place missed me and offered me another free week 🙂 I still suck at it and hope the other people in the class are not annoyed that I try and end up doing my own thing that is a highly modified version of what they do…
I think tai chi might be better, only if I could find a class!
June 1, 2013
I added variety to my dinner this week and made black bean quesadillas. I burned the top of my pinkie knuckle when I flipped it…then again on the same burn, and third time’s a charm? I will have to review my flipping strategy. 😉
June 3, 2013
I found a free Tai Chi class 🙂 I really tried to follow along, but kept turning the wrong way and was maybe 3 seconds behind everyone else. As a newbie, one of the instructors took me from the group to teach me the stances. I do hope to improve and join the group soon. I saw the end of adult Kung Fu class and in time, want to work up to that! It is good to have goals, no?
June 7, 2013
Relief! 840 units of Botox were injected on my left side for spasticity. It is an art & a science so, we added a few more muscles…reduced the amount in others that are becoming less active… We also hit some painful trigger points, too. I feel the placebo effect and cannot wait for it to set in…
My doctor did give me a prescription for Physical and Occupational Therapy to maximize my results. Yes! Back in training. 🙂
June 16, 2013
I am excited to share with you that I did pass my one year probation at work. I guess they decided to keep me. 🙂
It is pretty cool that I have been in Washington DC for a year! Who would have thought all this could happen? Stay motivated my Peeps and let the Universe help guide your path to wherever it leads you. That was so California. 😉
In other news, it was was time to flip my mattress and due to logistics, I decided to flip myself instead. Still confused about where I am when I wake up.
June 23, 2013
Fatigue amplifies my souvenirs…I decided to paint my own toenails for summers shoes. Well, my double vision was off the hook! I ended up having like 20 toes, challenges figuring out which toe to paint?, which bottle to resupply the polish? And, going over the lines something terrible. At least the extended sides washed off in the shower so I did not look like a first grader! Summer shoes…here I come!
June 26, 2013
One very special Peep sent me a bouquet of happiness 🙂 to help celebrate making my one year on the job. Every time I look at the cheerful flowers, I smile and celebrate. Thank you my Peeps.
For 3/4 of the day I thought it was Tuesday the 25th and yesterday I thought it was Wednesday the 25th. Someone please tell me what day, date and year it is! 😉
June 28, 2013
I found “aneu” physical therapy place near work. So far, thumbs up! I am excited to get back into it.
July 2, 2013
Really? I accidentally dropped my rent check in the mailbox, which sparked a save me from myself campaign 😉 Then, the bus stopped and my regulars said this is your stop…I was completely surprised. To my defense, I usually sit facing forward to see where I am. This time I had to sit backward…super confusing and surprising!
Then, I picked up my small cup of coffee before work. I scratched my head asking why the price went up so much?…uhm…because you chose the large cup on the self serve, not the small cup! It took me half the day to figure this out 🙂
And no day would be complete without a wardrobe malfunction…sleeves, head, arms…seems like such a simple concept?
So once again, really? lol
July 7, 2013
I forgot to update the outcome from the rent check debacle. My check was rescued! 🙂
I thought watermelon was a terrific idea on a warm summer day. Uh oh…how do I get the big watermelon out of my grocery carrier, up to the sink, wash it, and then cut it? Let me tell you, it was a big challenge…a very big challenge. Strategic planning and keeping fingers away from the operation made it more safe, but even more of a challenge. Now, I have a partially cut watermelon that requires strategic eating..yum, yum. 🙂
July 9, 2013
I saw the Doctor after some side effects had manifested from the last Botox injections. We used this opportunity to review injection sites and the amount (units) and ratio (2:1 or 1:1). We determined the side effects were due to “spread”. How it spread was a bit of a puzzlement? We explored different theories. Thankfully the side effects are waning, whew!
July 13, 2013
A friend was here visiting family. She squeezed in some time for us to have breakfast 🙂 It was nice seeing her and it was really nice to break up my usual day of work/sleep.
July 14, 2013
I normally struggle opening cans…today, it was particularly tough. I brought out other tools to help. Maybe if I turn the can upside down? Then I realized I had first tried to open the bottom of the can. Silly Gal!
July 17, 2013
I love physical therapy. I found this Center on my own and they specialize in Neuromuscular Rehabilitation 🙂 This morning, I had carryover from yesterday’s appointment. Pretty awesome. Lots of home exercises to do. Keep it moving. 😉
July 19, 2013
I am really trying to maximize the benefit of botox quasi-relaxing my spastic muscles. In addition to my new most awesome physical therapy place (which at this point, I pay out of pocket), I added more PT and then OT ,from a local University Hospital (UH),that is covered by my plan.
The UH therapists apparently do not know who they are dealing with. I almost fired them on the spot after they uttered those “window of opportunity” words and we will see you on a trial basis. Their specialty is orthopaedic, not neuro.
I used my inner filter to debate “therapy is better than no therapy” and btw YOU are the ones on trial 😉 hehehe.
April 28, 2013
Bleh! Fighting a sore throat…and my head feels like a saturated foggy sponge. Trying to drink plenty of fluids…
July 21, 2013
When I wrestled my left leg to get it in the sink (Don’t ask!), the bath mat under my right leg slipped away. This resulted in a fall between the cabinet and commode. Stay positive. At least my head did not end up in the waste basket.
Then, as I bent down to get the mat, I scraped my head on the strike plate sticking out from the door frame and now have a scab.
Needless to say, I am a bit sore.
Moral of the story: Don’t do that again! 😉
July 22, 2013
I like keeping my site advertisement free. But, I need to give a huge shout out to my new awesome DPT in the District, Jon Kula. Even after 2 sessions I am getting a boost in better walking. 🙂
Then, he recommended a shoe I should consider that is supportive and will not initiate my flexor synergy patterns, the Adidas Samba indoor soccer shoes. I got them yesterday. They make it easier to walk and they are super comfortable enough that I could sleep in them. For a minor change, it has made a huge difference. Now if they came black on black so I could wear them to work. Hmmm, should I dye them?
While I am on shout outs, my botox injector, Dr. Bahroo at Georgetown is awesome, too.
July 23, 2013
I did decide against those other non hopeful therapists and just stick with the one DPT who believes.
July 31, 2013
I was hoping to share a photo of what I did last weekend. I went horseback riding with other people. Yes, I wore a helmet and we walked slow, near a creek, with trees and butterflies. It was really pretty. My left foot supinated bad in the stirrup so it was good we only walked slow. I hope my foot straightens out soon.
August 14, 2013
😦 Bad taste in mouth five times yesterday. Had trouble walking last night because my left leg felt heavy and was not working well.
Got up this morning and my left arm was floppy. Decided it was probably a good idea to get checked out. Ended up with a diagnosis of Todd’s paralysis which may happen after a seizure. This condition should resolve in a few, or up to 48, hours. Taking it easy the rest of the day… think “come on little wing, work”…please think that with me. The power of the collective mind. May I think something for you?
August 15, 2013
Paying homage to my hemorrhage that occurred 6 years ago today. Wow!
Photos from my July horseback ride, enclosed:
August 23, 2013
I am falling down on the job AND have a chip on my shoulder. Literally 😉 I caught my right foot on the corner of something. Then, tried to catch my balance with my left foot, resulting in a fall where my left arm and such did not break the momentum. The finale was hitting my left head on a door, which just resulted in a bruise and a dazed feeling of wanting to hurl.
The stats: fractured clavicle, separated shoulder from the collar bone , fractured 4th metacarpal, AND the kicker…broken thumb knuckle needing an outpatient surgery on Monday. A whole lot of pain, yikes!
Moral of the story: Don’t Fall AND Slow Down
August 30, 2013
Technically it is “Thumb up”…not “Thumbs Up”, lol 😉 , because one thumb has pins holding the shattered thumb knuckle together. In excruciating pain, especially from the separated shoulder from collar bone 😦 Nerve blocks are great…perhaps that is why I look pretty happy in my post-op photo?
Think healing thoughts and no pain, please.
Petrified of falling….please remember to stay sunny-side up 🙂
September 6, 2013
Post-op uncovered the splint which exposed crazy looking body jewelry sticking out of my thumb. The rest of my thumb and hand are badly bruised. They will take out the pins soon, I hope. The puzzlement is why my shoulder still hurts so much? They are running extra tests on that. Stay tuned. You know this gal does not like staying idle…
September 11, 2013
Why does my shoulder hurt so much? I broke all the bones in my shoulder, except one. Yikes!
“You broke yourself good,” the Doc said. Remember, if you are going to do something, do it well 😉
September 13, 2013
I got my quarterly Botox injections on my left side to calm down the constant, abnormal, muscle firing patterns (spasticity). With all the shoulder and thumb pain, I feel like I have one big knot ball of twisted muscles. Maybe these injections will relax those muscles and take away some of the pain, please?
September 21, 2013
This unexpected “down time” from my injurious fall made me realize that I have essentially been in “survival mode” since I was offered my job. Fight or flight? What do you think I did? get in and get it done! I also realize there is disparity between my disabilities and my colleagues in the areas of multi-tasking, attending, not to mention one-handed typing and fatigue level….how to work smarter? Thinking of ideas…one, for sure, would be talk to type software. What ideas do you have?
Still in gnawing/burning pain in the shoulder girdle region…please make it stop. But, the thumb pins might come out next week 🙂
September 24, 2013
The pins coming out of my thumb looked interesting, except for the blood and a tiny little chunky coming out with one of them. Thumb pain, OT tortured me for the first time to begin range of motion exercises. Thumb splint, shoulder sling but, I can put on a long sleeve shirt now that the pins are outta there! 🙂
October 4, 2013
“First, do no harm”…the Hippocratic Oath for which Doctors promise. I digress. If a doctor specializes in “thumb”, and another specializes in “shoulder”…perhaps they should not non-treat out of their specialty. My shoulder is still excruciating feeling like I ripped something. “You probably did”, said the Thumb Doctor. Uhmm, “Hello, it hurts a lot. And, weirdly it looks like a couple bone fragments are trying to push through my thumb skin.
Call me a medical snob, but something does not add up…
October 11, 2013
I got a three wheel walker and cannot wait to use it when I have better thumb and shoulder function. Paid for my DPT to evaluate my neglected shoulder and give me exercises. Yay! and ouch. He also thinks that all this immobilization is responsible for some of the pain. Yup, yup, I agree. Get it moving 🙂
October 22, 2013
There are no coincidences. I thought about the series of medical mishaps I have had in August, including my brain aneurysm rupture.
Do you dare hang out with me in August? Absolutely, you are safe. I on the other hand, idk 😉
October 24, 2013
Dilemma. A cup of coffee or an umbrella?
I may not have a dilemma if I have a hat that could hold coffee, water, and have an umbrella sticking out? I have ideas, will build it, Beta test it and share.
Look ma, no hands 😉
November 2, 2013
My right knee is hurting, why? My physical therapist analyzed my gait and did knee testing. Turns out my affected side is driving sympathetic “symptoms to my right side. Meaning, I walk on a slightly supinated foot and I never straighten my knee, etc. I need my right leg to walk “normal” and drive changes to my other leg. I am so afraid of falling I walk very timidly which might actually increase my chances of falling. I have a new walk and my knee is hurting a little less. After physical therapy gait analysis, I wonder if I ever knew how to even walk before my injury 😉
My shoulder and thumb are getting vigorous painful and range of motion therapy. My impatient self wants these boo-boos healed sooner….
November 3, 2013
Walking IS really complicated. Practice, practice. Form over quantity.
November 11, 2013
Pay attention, look down, not around. I know I am really not supposed to look down when I walk, but for sure I should not look around. Stop, then look and proceed.
Do not forget to tell a Veteran that everyday, not just today, is Veterans Day. Thank you for your service to our country.
November 17, 2013
I had an MRI of my shoulder since it still hurts from my fall back in August. In my self-proclaimed online radiology degree, I noticed some suspicious areas, and one area that looks like a rib-eye steak, lol. Having the patience of a puppy, I am eager to find out what trained professionals have to say. Do I really have to wait a whole week?
November 22, 2013
“Natorically” – the word from the Aneu Dictionary, which means “notoriously”. lol 😉
You know it is bad when spell check cannot offer any synonyms. I knew the word sounded wrong. I called in a favor with a colleague who found the word I was looking for. Yes, I laughed.
November 27, 2013
It is Thanksgiving Eve. Have a great day of warmth and thanks. I look forward to chillaxing 🙂 and think of the things I am thankful for.
November 28, 2013
I am thankful for many things. The day just got started with thanks to whoever developed coffee AND pecan pie 😛 the pretty red leaf I admired on the sidewalk, and not slipping on frozen ice puddles.
I hope you have a great Thanksgiving!
December 4, 2013
I remember completely missing the cup when trying to put sugar in my coffee when in the acute rehab hospital.
Apparently, pouring water into a glass from a pitcher is not much different. Everyday at work for the past three days, grrr.
What are we going to do with me?
December 12, 2013
I keep on taking hits. This one involves my knee vs. a taxi cab bumper.
I looked right, left, the lighted figure said it was my turn to cross the street, traffic was stopped, other people were walking, and blam. A cab backed up into the crosswalk because his nose was in the intersection. He got me right at the knee. Could have been worse. Now sporting a “knee immobilizer” and a cane. They wanted to give me crutches, but with the shoulder and general coordination, the cane seemed a wiser choice.
December 20, 2013
Aneu Gal’s big adventure. I left super early and headed to Baltimore and navigated around until I reached Johns Hopkins. I have a wonderful new doctor, a specialist in stroke rehabilitation, particularly in spasticity, yay!
We will do a test to see if I am a candidate for the baclofen pump. This was already on my radar while still in San Francisco. I am excited to try something new to hopefully get a different outcome 🙂 Free with movement would be really awesome.
December 25, 2013
Embracing my abilities today.
Aneu Day 2014
January 1, 2014
This year, I decided to adopt ideas, not resolutions. This way I have goals and objectives to help me implement the ideas. Kinda like trying on new clothes. For sure, I hope 2014 will keep me sunny-side up by reduced incidents of injuries from falls and stuff.
I hope 2014 will be your year. And, hope it brings you good health, prosperity and happiness 🙂
January 12, 2014
I have my test for the baclofen pump at the end of the month. This test consists of a spinal tap and injection of baclofen into my spine. Then PTs and OTs run a battery of tests…
My Walk Aide was damaged when the taxi backed up into my leg. Operation repair or renew?
January 19, 2014
I began the interactive process of asking for workplace accommodations. I was a bit apprehensive to begin this conversation. It’s time to level the playing field. Keep you posted.
January 24, 2014
🙂 I am on employer sponsored health insurance 🙂 I will pay my Medicare premium for at least couple years as my “just in case”. After returning to work and getting off SSDI, you are able to keep Medicare for up to 5 years to ensure you “successfully” acclimated to the working world.
I cannot tell you how scary it was to stop my Medicare supplemental insurances…
Wish me luck!
January 28, 2014
I am really optimistic of the potential reduction in spasticity with the help of a baclofen pump. E did a “test” run to see if I was a candidate. They did a spinal tap and injected baclofen into my cerebral spinal fluid and then had me marinate for a couple hours. Then PT and OT returned to test functional results from this procedure.
Thumbs up 🙂
February 9, 2014
Winter has been cold in DC this winter. You would think that I would have mastered putting on gloves. Well, my fingers are using the buddy system and not using all the fingers of the glove. At times I ask for assistance. If you can’t beat them, get fingerless mittens 😉
February 21, 2014
My pre-op went well. My surgery to get the baclofen pump is right around the corner. The surgeon went through the benefits and disadvantages. The 100% fail rate gave me pause. The lifespan is 81 months and it may have issues before then. Everything has an expiration date. I am willing to try the pump for a chance of spasticity relief. Think relaxed muscles.
March 4, 2014
After our East Coast winter storms (i.e. “Snowchi” and “March Snow Madness”), I needed more traction with the Earth. I am a proud new owner of snow/ice chains for my shoes 🙂
March 9, 2014
I got it! The baclofen pump was installed in my lower abdomen. A catheter goes from there to my cerebral spinal fluid to deliver muscle relaxant. I expected instantaneous results (my impatient side showing through). I told the doctors the pump was not working and let’s return that for a working one 😉 Now a couple days later, I am having noticeable improvement 🙂 Okay, and pain from the incisions.
They will increase the dose of medication, and the rate at which the pump administers the juice, lol 😉
I am really excited.
March 19, 2014
I developed a large hematoma at the surgery site, but it is resolving.
Weekly, we are adjusting the dose and the rate at which it delivers baclofen. The doctor puts a stethoscope looking thing that is attached to a hand-held computer. This talks to the pump through my skin, and walla! , the pump is programmed. Pretty neat.
March 24, 2014
We are slowly adjusting the amount of medication the baclofen pump administers. The “loose-juice” is working on my muscle tightness/spasticity. I feel like I’m walking more at ease, and it feels awesome. 🙂
April 10, 2014 I am so exhausted I could sleep standing up on a short elevator ride. Weekly visits to Johns Hopkins to adjust the medication and making up missed work has really tuckered me out. But, I pushed myself to see the cherry blossoms at the Tidal Basin after work. The blossoms remind me of popcorn clouds. They are really pretty. 🙂 Crowds really freak me out post injury. I avoided them by viewing the blossoms at off-peak times. With the baclofen pump loosening my muscles, the walk was easier to do. Just remind me not to get overly confident 😉
April 14, 2014
I paused for a second when my doctor said the baclofen reservoir refill is scheduled for 08/15, the date of my aneurysm rupture. I shared that and he paused. He reminded me that every time we adjust the dose it moves up the refill date.
May 9, 2014
We were concerned with the marked increase in spasticity. Feeling that restrictive muscle tightness was not good. We did an imaging study where the doctor injected dye into the catheter of the pump. Great news! The catheter is intact and still connected to where it needs to be. Yes! We increased the dose, too. My loose juice is back!
Possible explanation…a fluke? uhm, okay, but there are no flukes just like there are no coincidences. Think about that and let me know what you come up with.
May 10, 2014
I celebrated National Train Day by taking a special 12 minute excursion train ride. At 125 mph, 12 minutes covers a lot of ground. 😉 I was on the Acela, the only high-speed train in the US. Go speed racer, go.
June 1, 2014
I have been a busy gal. Hint, I still do not know which timezone I am in. Truly exhausted.
I have not had a true vacation in 2 years. Really?
10 hours in San Francisco to teach first year medical students at UCSF. Two doctor appointments, then another plane to Salida, CO where I met up with my family. Tornadoes, hail and thunderstorms. We had a couple days without crazy weather.
I asked my nephew, “What is my #1 job duty?” “To spoil me and give me back to my mama”. “You got it!” 🙂 We got up early, played hard, played cards, played legos, drew, and created neat characters with modeling clay. Of course he got some ice cream, too. 😉
Went back to work the very next day with a lot of work that came in while I was away for 3 business days. I am very overwhelmed at work, but had a great time on my trip. I had an appointment at Johns Hopkins right when I got back, and I have two this week…. Vacation is bittersweet.
No rest for the weary. I need a vacation from my vacation. More coffee?
June 3, 2014
We added medication to the baclofen pump reservoir. Stick a hefty needle through the skin into the pump, withdraw remaining medication. Add more medication at a higher level of concentration. Reprogram. I am amazed with medical technology.
On the train ride back to DC, I remembered my nephew asked if I had a speaking problem. Yes. We renamed my vision problem to a “finding” problem when I could not find the ammunition quick enough to reload my lego character’s weapons. Really important skill. 😉
June 8, 2014
It was a tough week…The process of workplace accommodations is tougher than you might think. There was a pump manufacturer programming malfunction which put me in a precarious predicament. I had a brilliant idea to try to get somewhere using a new route, got lost. I blame it on the circles and how they dissect the streets into quadrant confusion. What’s up? Not me. I fell in a bed of bark chips. Soft landing? Tough week.
June 14, 2014
Funny how things come together at the same time. We are revising the location of the pump and catheter because where they are currently located causes pain.
Then, I’m moving over to the West Coast.
I get in ta mental mind zone when everything hits at one time and feel quite accomplished as I work through my to-do list. Nevertheless, wish me luck.
June 20, 2014
Move over Stella. Hello, Bella!
Bella is the newly relocated baclofen pump and catheter. She’s doing great. I am resting for maximum healing.
This is the countdown of my final days in DC. Whew. Lots of things to do and coordinate.
June 28, 2014
The other day, I got this weird taste in my mouth. I thought it was the aluminum from my deodorant seeping into my body. Nothing I did got rid of the taste; food nor breath mints. I even bought new deodorant. I went to sleep kind of early because I was tired. The next morning, I woke up confused and had some trouble talking. Coffee did not wake me up as it quickly as it normally does. I guess with all the stress from the move resulted in a seizure. 6 days left in DC…
July 7, 2014
The movers came and left. It still has not set in that I am moving from coast to coast. Tired and sore. Caffeine is a good thing.
I strolled my favorite spots, took photos of my spots. Walked by the White House. Did I mention I live 7 blocks away from there?
4th of July fireworks were great, but I did not go to the Mall. It was funny. I said ” I don’t like a lot of people”, when I meant to say, I don’t like crowds.
In the spirit if our Country’s 4th of July reminded me I gained my freedom and independence. That is a good thing. I did it!
July 09, 2014
Hi, here I am on the West Coast. I cannot begin to tell you how extremely exhausted I feel. I guess I’ll perk up when I know which timezone I’m in?
July 14, 2014
I am getting used to getting around on my “aneu” city’s public transportation system. The DC transit system is more efficient and frequent, less expensive and cleaner. During DC commute time, there is an intense fast-paced electricity of people moving and you better be moving with it. SF is relaxed in comparison.Each system has its strengths. I need to learn a whole new way to get around.
DC and the DMV (DC,MD, VA) is much more concentrated so getting from point A to B is easier and quicker. the SF Bay Area is more spread, point A to B is not too quick unless you are on a main artery.
I have been a doctor appointment power horse. I am getting reestablished with my A-Team at UCSF. The weather in San Francisco has been glorious so I get to enjoy the outdoors between appointments, like Ocean Beach!
UCSF is closer to me than Johns Hopkins was. I like convenience. This will mean less disruption to work.
I am still dragging my tails feathers. I start working at my new office next week. Yeah & Yikes!
July 23, 2014
I went to my appointment after work to get Bella’s medication adjusted. The metro was busy and we all were armpit to armpit. A woman asked me if I was pregnant and if I wanted her seat. I thanked her for her kindness and continued to stand.
Baclofen Bella, the Pump, does look like a 3 inch hockey puck bump 😉
A great benefit to looking down at the ground is finding money 🙂
July 27, 2014
The first week at my new office was exhausting and really good. I am preparing for my second week. Once I get used to the new routines I think it I will be less tired? I hope. Caffeine helps, somewhat.
July 30, 2014
Stay tuned in. It looks like I have 2 Bella catheters in me, the new one and old one.
I am scratching my head a little bit. My medical team will do a CT scan with contrast to answer; are 2 catheters better than 1? 😉
August 15, 2014
Today marks 7 years post-aneurysm bleed. Lucky 7, or 7-year itch?
I thought I’d drop in and say hello to the staff from the rehab hospital. I feel like a celebrity.
We were so happy to see each other. They told me I don’t get frequent flyer miles. ..because I am here as a patient 😦 I broke a few bones, including my pelvis and right wrist.
My therapists threw a gelato/pizza party. We celebrated 7 years of milestones.
The silver lining? I’m using the hand which was paralyzed 7 years ago to do everything because the dominant one is immobilized.
My fine-motor skills and level of control frustrate me. I feel like I have Elmer Fudd fingers. With practice, I’ll get better. And let me tell you, I’m getting practice.
Happy 7-year birthday to me.
September 14, 2014
Patience? No. I’m impatient. I want to get better from my fall. Come on already. Please? Still dealing with impaired mobility and cannot wait to get my cast off.
September 25, 2014
I got my cast off today and had a great shower! 🙂
The wrist is stiff, sore and vulnerable. I miss the comfort and safety of my exoskeleton. This boo-boo shall heal in time. Once again that “patience thing”…
October 25, 2014
This will be my sixth move in 7 years. really? That is a lot of moving. I am very pleased to report that I got an apartment. It is located is about 2 blocks from work. Yes! Independence, shall be mine again. If you think about it, you go to work everyday….just under 2 blocks is an awesome commute. I am close to public transportation AND my gym.
I am super excited. My body is still healing so I have to modify my momentum and make sure I take it easy. Thankfully, some good friends offered to help. 🙂
November 30, 2014
Finally! Social Security is asking me to refund them a large amount because they overpaid me. I had been waiting and tried to tell them multiple times they were overpaying me. That kind of pissed me off because I considered my work reentry a recovery milestone. I guess it is another evaluative measure to make sure you can work with disabilities. They eventually stopped paying me and now over a year later their books finally caught up with me.
This would have been scary had I not tucked away the money. Note to my Peeps: After you make more than Substantial Gainful Activity (SGA) in a 9-month “Trial Work Period”, tuck away the money Social Security pays you, they WILL want it back. You know you should not be getting it, don’t spend it.
December 30, 2014
When I was getting my baclofen pump refilled, I learned my brain injury rehabilitation hospital relocated to its new home. It’s for real, I can never go back to that rehab unit. It’s crazy, that chapter closed, for real.
I might return to the new location as a volunteer?
Aneu Day 2015
January 16, 2015
Wow, my first post of 2015? I have been a slacker in many respects, but I know I should cut myself some slack, lol 😉 . I am transitioning to the West Coast, a new office, a new apartment, trying a new antiseizure med, and recovering from multiple fractures. So in summary, I have been off the grid. I hope with spring just around the corner that I get back on my game. Let us make this a great year, even if it starts off a little slow. Happy New Year!
February 1, 2015
I have not been too thrilled with the results of the intrathecal baclofen pump, ITB. We went up in dosage and I got too weak, then we went down, and I got better, but I am walking a lot on the side of my foot. (ouch, and double ouch). I met with my neurologist and we are going to inject my peroneal breves with Botox, again, to prevent to pulling of my foot to its side…hmm…I thought the ITB was supposed to “solve that”?
In discussing my displeasure with the ITB, we will slowly start reducing the baclofen dose to test how much benefit I am actually receiving from it. I want it out. I feel it bamboozled me, gave me a glimpse of sunshine through the clouds during the trial, and now that it is in….I feel it was false advertising, the trial results were not replicated 😦 , but I guess we should reduce the dose to see how much benefit I am receiving from it, before a surgery to take it out?
If it was up to me and my impulsive self…it would already be out!
On a positive note, my neurologist was impressed with the assistive device I purchased…a walker. He had never seen one like it before. I really cannot afford to fall again, shattering like a China Doll is a non-option.
Walker? You are probably thinking something medical looking…not so! It is sporty looking, larger wheels in the front, great turning radius, the seat does not get in the way of your walking space. You drive it. I have used it since November and love it! No falls, and it has prevented a few falls. Yay!
You know I am not one for advertisements, but if you search for “Access Active Rollator”, you can see what I got. I found the best price to be on a large boxstore’s online website. My walker is a conversation starter. (people on the street like it!) 🙂
Maybe I am getting more wisdom? lol Or, recognizing my limitations…? There is no doubt that since returning to work, my neurological gains I had, declined… 😦
February 18, 2015
I went back to conquer the public transit station. I was in a hurry to get to an appointment and my walker would not fit through the turnstile. So I collapsed it, got through and got greeted by stairs. And then, I had to walk clear across the platform to get to an elevator, to another turnstile, more stairs, to get to another elevator to get me to the right level. Oh my goodness. I can not tell you how frustrated I was.
On a walk on a different day, I ended up taking the Ferry to San Francisco. Very accessible and fun! On my way back, I visit that transit station to conquer the puzzle of how to get where I need to go without all those obstacles… I think I figured it out. It still is not very accessible, but at least I got an idea how to navigate it without getting trapped.
February 8, 2015
I love it when I find something unexpected…like a dollar bill on the sidewalk. I cannot help but feel lucky 🙂
I went to my old Aneurysm and AVM support group this week. It was nice to reconnect. A lot of new faces, but some I knew. They had a guest speaker a PT/P.h.D. Lots of information. The take home message was: whatever treatment you are doing today will not work well forever. When it stops working well, revisit and try something new. Keep it interesting, new, and fun. Recovery is endless.
March 1, 2015
Sheer exhaustion? Seizure? I slept through Saturday, 36 hours, or so, of slumber? Too much sleep. I feel discombobulated. I will let my doctors know just in case?
March 4, 2015
Uh oh, Houston, I think we may have an ITB problem. I went to get my reservoir of the baclofen pump refilled with medication. You have to extract any of the old medication to refill it with new medication. Well, I had way too much old medication left in me which indicates a problem. Is the catheter still attached? Is the pump motor working? As we investigate the cause(s) as to why I am not getting the medication, we will know what to do. I have had so many problems with this thing, just take it out of me is how I feel about it….
March 20, 2015
Happy First Day of Spring! I am hoping for a renewal of improved health. The Intrathecal Baclofen Pump (ITB), was surgically removed. What an ordeal. Good Riddance! I had it for about a year and had nothing but problems with it. The catheter had a “severe kink”…imagine a straw bent at 90 degrees. That means, I was not getting the required anti-spasticity relief. Boo.
I started up with Botox injections of the lower extremity and am rekindling Physical and Occupational Therapy.
April 18, 2015
I started back up with PT, OT, chiropractor and acupuncture…yay! but, I am exhausted…I also tried laughter yoga, that was ha, ha, ha, ho, ho, ho fun 🙂
I am excited that the Aneurysm and AVM Awareness walk is coming up on May 3rd in San Francisco 🙂 It is such a powerful event! If you are in the area, check it out: http://www.taafonline.org/
April 4, 2015
I had a follow up with my neurologist, post ITB excision. We are glad we tried it, but with all the problems I had with it, it is an omen to not do it again. I had a loss of consciousness recently, which sounded like a seizure, boo. The CT scan showed I bumped my head.
Social Security also tried to recalculate my Trial Work Period (TWP) months, so I filed an appeal to make sure the original TWP months decision remained. You are able to have an expedited return to benefits for 36 months after the end of your TWP, if your original disabling conditions worsen. With my increase in seizure activity, I want to really be sure I can work.
My neurosurgeon, Dr. Lawton, spoke at the UCSF Aneurysm and AVM support Group. It was great to see him and all the other survivors!
April 20, 2015
Chiropractic is definitely a West Coast thing. I still hurt a lot from my pelvic/back fracture and after I saw the CT scan that shows my bones healed, I went and saw Dr. Paul Walton, my awesome chiropractor. He un-knotted some adhesion and oh my goodness my lower back/pelvis is feeling better. Wow! What an improvement, it even helped me walk better, and less pain.
April 28, 2015
I had PT today 🙂 I am trying to get back in business. My PT is worried about how I walk on the side of my foot. I have this bumpy bone, that is red and hurts because I walk on the side of the foot…
May 3, 2015
Today I walked for Brain Aneurysm and AVM awareness. It was a chilly and windy morning in San Francisco, but a big group of Survivors, Caregivers, and In Memory Of’s came together to represent.
May 7, 2015
The BART public transit system is not friendly when you use a walker. It is a true Chutes & Ladders experience requiring deductive reasoning. Elevators to get to the different levels are on opposite ends of the platform, if they are in service. If they’re not in service, finding the working escalators to get you places that don’t lead to stairs is a frustrating feat. And, it’s not easy to swipe your transit card because of how you need to exit and enter. The Washington DC Metro is much more disability friendly.
Then a quick note to commuters. Thank you senior woman for offering your seat to me. I could not possibly accept your kind offer when a young professional listening to music and texting with sunglasses on at dusk is absorbed in not connecting with society… It was an armpit to nose commute, people squishing into me and my walker. Get me out of this place!
May 22, 2015
I co-taught the Brain Mind Behavior Course to the first year medical students 🙂 I love teaching our future doctors of America the potential of recovery from a catastrophic neurological injury.
June 3, 2015
I know I am slower post injury, but it took me a long time to finally figure out that swim goggles work better for me 🙂 For the longest time I used a face mask…the problem you ask? Um, well, water would get in my face mask because of the dent on the side of my head from the hemi-craniectomy surgery. Duh!
I am happy to report that I have started to incorporate some “swimming” in a pool as part of my exercise. Swimming is in ” ” because it is tough to do, my left side is weaker, so I contort my body to the stronger side, and I really cannot tell where my left arm goes when I try to swim freestyle? I wish someone could take video. Also, I have to share my lane and I have trouble staying on my side. Lol 😉 But, I do try to time it because the lane sharer swims a lot faster.
June 11, 2015
Note to self: Mercury is still in retrograde and things in the Universe are still cattywampus.
Hmmm, my Botox injections took twice as long, the doctors had problems finding the correct spastic muscle areas so I had a lot of pokes. What was worse though was them positioning the needle numerous times with the same poke. I was tenderized, but I’m not a steak. This time, I ended up with a little pool of blood around my heel. Sigh.
And, they use EMG guided wire needles to ensure they are in the most active muscle when they inject. Let us say, sometimes they injected the Botox when the sound was more distant. I explained my less than confident in the injections. “Don’t judge me until the Botox starts to take effect” was the doctor’s answer. “What the huh?”
Remember, Mercury is in Retrograde until the 11th …wait, that is today. 😐
June 18, 2015
I woke up with a bruised nose. What the heck? Apparently sleeping is dangerous!
I had a great PT appointment today. My pelvis actually got a little relief from pain. See my tear of happiness? I hope I get to keep the magic. 🙂
OT was good, too. I got to play with jumbo playing cards!
Now, I wish I could focus more on PT and OT and not squeeze it in to the end of my day after every ounce of energy is eked out from work.
June 28, 2015
Since moving to the West Coast last year, my concept of life consisted of work and medical appointments. My friends scooped me away to a Minor League game. 🙂 Wow, what a nice break from life! (fun and super exhausting).
July 24, 2015
I got my first brain MRI, ever. Ever? Yes, ever. Lots of CT scans. An MRI is pretty cool because you see a 3-D image of your noodles 😉
I love reading the report because I research every word I do not know and learn lots of new things. My doctor interpreted the results and it looks “normal” for the aftermath of a brain tornado 😉
Nothing necessarily to explain increased seizures. Now onto the next test.
July 29, 2015
I was fortunate enough to connect with the Joe Niekro Foundation at a NeuroInterventional Surgical Conference in San Francisco. They are dedicated to research, education, awareness and support of brain aneurysms, AVMs and hemorrhagic strokes. The daughter of baseball player Joe Niekro who passed from a Grade V bleed created it. They seem to have a strong Facebook survivor network.
I was super lucky that my Occupational Therapist dropped into my office during a lunch break from an OT conference that was a couple blocks away. She was able to modify some disability accommodation equipment provided to me by my employer (ergonomic chair, keyboard tray) and customize it to me. Pretty awesome for a trained outside eye to make sure I am ergonomically correct. Simple and easy and such an improvement! At one of my OT appointments, she crafted a hand mold so my hand can rest without my fingers curling…it is now attached to my keyboard tray with Velcro.
Acupuncture and chiropractor have been going well, enhancing my OT, PT, and other doctor appointments.
My orthotist is adapting my left shoe so it will be harder to walk on the side of my foot. Keep your fingers crossed this will work. I get my shoe back next week. She also modified my AFO, but I am overpowering it with my spasticity and still walking on the side of my foot. Boo.
Needless to say I have been busy! And, not to mention, exhausted. (Like an earlier in my recovery exhausted).
August 8, 2015
Check out my new shoe! It is really big. We are trying to prevent me from rolling on the side of my foot when I walk. Took them out for a test drive…the concept is good and provides good stability. Regrettably, the spasticity turns my foot inside the shoe. Hmm. What to do next? I shall review with my neurologist after my next Botox injections in September. Hoping my Botox injector has the magic touch.
August 15, 2015
Today is my 8th year annie-versary. Post injury, I developed a sweet tooth. I could not think of any better way to celebrate than eating a slice of sour cherry pie and having tea with a good friend. So, thinking where I was last year (scroll down to August 2014)…I am so happy I have survived August, thus far, without any major medical catastrophe. August tends to bring crazy medical things…scroll back to August 2014, 2013…
Happy Aneu birthday to me!
A lot of accomplishments and setbacks have happened during the 8 years post bleed era.
August 22, 2015
I totally forgot to mention that I met someone from the FDA at the conference I went to in July. Me, being me, had always wanted to participate in FDA clinical trials surrounding brain aneurysms, but their website was difficult to navigate. The FDA guy connected me with a colleague who talked me through how search active clinical trials. What was even more awesome was I had shared this weblog and my movie. The FDA, concierge I’ll call him, pre-researched some trials/published studies and turned me onto a prescription medication for spasticity that neither of us had heard about. I’ll ask my doctor about it. The FDA was truly wonderful and responsive in answering my questions about clinical trials and how to navigate their site. Pretty cool.
September 10, 2015
I am breathing a sigh of some relief from spasticity. What a difference Botox makes when you have a good injector 🙂 I cannot wait for the results to really settle in.
October 16, 2015
I wonder if they can read my thoughts, too 😉 I am in a 24 video and EEG monitoring study for the week.
Why? To pin point which part/s of my brain are responsible for my seizures. I have been having some nocturnal seizures. Wish me luck. I hope we get good data, but I am really nervous about having a seizure while I am awake.
Other than that, I was able to squeeze in a couple micro-weekend-trips to visit friends/family in two different states since the last time I wrote.
October 22, 2015
It was creepy and fascinating to see me in a bird’s eye video with corresponding EEG wave patterns (brain electrical activity) and learn the science behind the big seizure I had when I was in the hospital. A few more tests need to happen to get more specific data about the offending scar tissue that may be the starting point of seizure. Can they ablate that sucker?
November 4, 2015
I wonder about humanity, or the lack thereof. It was dark when I was walking home and across the street I saw a man fall a few times, hit his head, try to get up, hug a retainer wall, fall again, lean on a tree, drop his phone, fall again, lean on a tree. Sooo many people just walked by, without barely a pause in their step. I observed for a few minutes to process and make sense the scene. Was this man having a medical emergency? Was he drunk? Regardless, it did not appear he could take care of himself.
I called 911, “we are experiencing a high volume of calls, don’t hang up, the next available operator will be with you shortly….and it repeats, and repeats” What? Really? I was on hold for what felt like forever. More people continued to walk by. EMS responded more quickly than my 911 call, picked him up and they left really rapidly with sirens blazing. I hope he is okay. Someone has to care, and today that was me.
November 7, 2015
I called upon my inner McGuyver, bought a few shoe insole items, grabbed my scissors and built up the left side of my orthotic, to prevent some rolling of the left foot. I was inspired by my Physical Therapist a few years back, who fashioned a similar thing with duct tape and a bunch of cut up file folders. Result: a little more left foot stability within the shoe. Yay!
November 10, 2015
My acupuncture and chiropractic appointments have accumulated into some really feel good moments 🙂 I wish those moments would stay longer, but it gives me hope. I even started taking mindfulness classes. Pretty cool things percolating.
November 16, 2015
I got great news! The blood clot under the retina in my right eye finally reabsorbed – 8 years later. I am super happy. Add that to the blood under my left retina that reabsorbed in 2011 🙂 Still have the visual field loss, but hey, proof the body continues to heal!
December 2, 2015
I experienced a Magnetoencepalogram exam(MEG) today. There are only 2 of these machines in the state ad I had the privilege to be in it. It is a double test with EEG and a big futuristic Judy Jetson hairdryer thing that measures the magnetic fields of electrical activity in the brain. Now, everyone needs to analyze the data before I learn the results. Stay tuned.
December 3, 2015
I felt like I was in finals exam week all in one day. I underwent a comprehensive neuro-psychological exam battery to measure my cognition level. I have to wait until 2016 to get the results. I am super impatient and want to know now. The results will be in comparison to a previous cognition tests. Stay tuned.
December 10, 2015
I had a healthy dose of botox injections in my left side to quiet my spastic muscles. The effects are starting to work. I am getting some relief to the point where I can step onto my whole left foot when I stand (not just the side of the foot), and I am getting some relief in the neck, hand, shoulder and arm.
Kind of funny: my neck muscles were so tight, the fluid exploded out of the syringe. On try two, at a different angle, they slowly pumped in the juice. I really need to take this opportunity and stretch all these muscles a lot, until the magic starts wearing off and until my next injections in April.
Aneu Day 2016
January 3, 2016
Happy New Year! I can now officially say that I did not break any bones in 2015 🙂 I had fear of saying it sooner – not to jinx myself.
January 14, 2016
How extraordinarily frustrating… They did a software update to the special database we need to use practically every minute at work. Well, the update is incompatible with the larger text size I need to have to see because of my visual limitations from the bleed. I have been present, but unable to work for the last 4 days. And, it is a very busy time of year for us. Each “fix” we tried so far failed. I feel frustrated and deeply saddened.
January 24, 2016
My Botox injections for spasticity have really started to wear off already 😦
My awesome chiropractor, Dr. Paul Walton, has done some aggressive adjustments to my hind-foot that enabled me to stand on my foot flat and have my knee aligned 🙂 Crazy awesome for a day or two! Then spasticity takes over and painful walking on the side of my foot. Sigh. What is Aneu Gal to do?
btw, still no accommodation from the employer for me to be able to do work with the changes they made to the database. Work is piling up. Super stressed 😦 This extra-stress has increased spasticity and seizures.
January 29, 2016
Yay! Work provided a larger computer monitor. I can see! And, I am now able to work again 🙂 Now I have 18 days of work to catch up on…
January 31, 2016
I have interesting news…
…in a few months, I will be having a lot of my right temporal lobe removed, yes, brain surgery! I think of it as a solid potential of reducing (or even eliminating seizures) by removing the scar tissue that causes the electrical irritability (seizures and other random electrical misfirings). Just a few more tests, and life preparation, but it is a relatively “routine” surgery with a high probability of good results. Stay tuned, for sure. This should be an exciting year 🙂
February 20, 2016
I have a full-time job after work trying to take care of me. I am desperately trying to regain function I lost since returning to work. I tried my first class of yoga for stroke survivors. Nice! Nothing like downward dog, but it blended meditation and active stretching, holding, and breathing.
I reengaged with PT for my affected foot to help build on the increased range I am getting from the chiropractor breaking up my hind-foot. My PT literally tapes my foot to a board and stretches the heck out of it, until the spasticity gives in. We are trying out best to help me stop walking on the side of my foot.
I see an acupuncturist and manual medicine doctor, too. Plus, regular doctor appointments. I keep everyone in the loop so we build on each other’s specialties.
It seems all I do is work. Not much play or energy for a social life.
March 14, 2016
Last week was so busy! Full time work, plus a doctor appointment everyday of the week. My chiropractor broke up the scar tissue in my hind foot from me walking on the side of it, then 700 units of Botox to paralyze the spastic muscles and then aggressive stretching with my physical therapist.
We tape my foot to a bamboo cutting board and my spasticity tries to fight each stretch (trying to avoid going into a position that my foot has not been in for a long time.
With the team this week, I was able to walk somewhat on a flat foot (brief carryover) from the treatment. Now if I could keep that flat foot forever…
March 20, 2016
If you look at my shoe “wedge” from my August 8, 2015 post, we have now added a quarter inch “lift” to the outer edge of my shoe. And you thought I was a fashionista 😉
The idea of adding the lift is to gently slope my foot toward the instep, rather than allowing me to land on the outside of my foot. Day two with the “wedge-lift” and I like it.
I found a shoe repair service in Lafayette, CA that copied the medical wedge and added the lift, per my PT. Now I am bringing in more shoes to him get the “treatment”.
I just finished watching a good documentary on NetFlix by David Lynch and the survivor titled “My Beautiful Broken Brain”. It chronicles the language recovery of a 34 year-old woman from London who survived a massive left hemisphere hemorrhagic stroke. Although mine was a right hemisphere and hers was left, meaning we had very different experiences, it was very worthwhile to watch (a two thumbs up rating from Aneu Gal 🙂
April 10, 2016
I am on the move again. In preparation for brain surgery in June, I thought it best to relieve myself of independence and move back in with the parents. I thought about this long and hard. I think it is the smartest move given the unpredictability of the outcome from surgery.
I managed to spoil my nephew in Legoland 🙂
Here he is on his first roller-coaster! It is my first roller-coaster, too, post-injury. See how my left arm does not go as high as my right?
April 23, 2016
Something interesting happened. My chiropractor aggressively adjusted knee and I walked better (foot more normal, knee pointing the correct direction, etc.). The effect lasted for two wonderful days. Hope 🙂
May 17, 2016
The left side of the world was not my friend today. I ran into so many things & people. I felt bad about the people. The heavy front door to my office building took the wind out of my lungs and I almost dropped my coffee. One guy I ran into in line at the store, joked about me hitting on him, lol, but not really.
May 26, 2016
I taught first year medical students today 🙂 I love doing that! It is for the Brain Mind Behavior class. One theme I emphasized is that there is no 6 month to one-year Window of Opportunity to recover and neurological recovery is endless if you work at it, have fun, believe, and include knowledgeable medical professionals who know the science. Enough said.
June 7, 2016
I reached out to Stanford University to offer myself as a research subject if they do any more testing on stem cells and stroke survivors. They just had groundbreaking research on the treatment and 7 of the 18 volunteers derived measurable improvement (like being able to walk after the treatment). Wish me luck! I hope they take me up on my offer 🙂
June 10, 2016
I had 700 units of Botox injected a couple days ago and I am already getting some relief from spasticity. Yes! My Physical Therapists, Manual Medicine Doc and Chiropractor had some sound observations for which muscles to target. So far, I am getting a better result than the last few times 🙂
June 15, 2016
Oopsy-daisy I took a tumble 😦
I did break a nail and got a few bruises. Thankfully, no broken bones 🙂
June 26, 2016
Wish me luck tomorrow! I am having brain surgery to hopefully reduce the amount of seizures I experience.
First night home after the first surgery.
July 17, 2016
Brain surgery on June 27 went well. I developed a complication during recovery of accumulating excess cerebrospinal fluid that resulted in a second brain surgery to put in a shunt. I am recovering well and am truly amazed of how high-functioning I was, now realizing how crummy I felt before the surgery. The doctors were surprised that I did not report more seizures than I had because of how much scarring I had in my brain from the original injury in 2007.
How do you quantify “crummy” as a symptom?
Who knew that taking out problematic brain would have other ancillary benefits.
July 26, 2016
I am doing relatively okay for having 2 major brain surgeries in the last month. The fatigue is exhausting and pain is still present; therefore, I apologize for being off the grid. I am taking it easy and resting. Rest and no/low stress is good for the brain. Those who have known me pre- and post- the original catastrophic bleed from 2007 have noticed improvements from the recent brain surgery on June 27.
These observers include friends, family and medical providers. Improvements include less spasticity, being more engaged in conversation without as much cognitive delay, and interestingly, some see a glimpse of my personality from pre-injury.
I am very optimistic.
July 27, 2016
The neurosurgeon and epilepsy doctor are pleased with the results of the seizure surgery, even with the complication of a large pseudomeningocele the abnormal collection of cerebrospinal fluid – kind of think of it like a balloon of fluid at the surgery site. That complication resulted in the second brain surgery for a VP shunt placement to help me deal with the excess fluid.
See how the right side of my head is swollen? That is what a pseudomeningocele looks like.
Now you can see both scars from the surgery on June 27, and the fresher looking scar behind the ear is from the VP shunt surgery on July 11 that took care of the swelling pictured above.
The doctors are humble and are not taking credit for what I consider ancillary/unexpected benefits of the surgery like my speech being more fluid, less of a struggle and less spasticity.
I am attending physical and occupational therapy, and other medical appointments. I am maintaining a low-key recuperation environment. 🙂
August 5, 2016
Still really fatigued, but surviving on caffeine. I got a haircut, too 🙂
August 15, 2016
Today, I am 9 years post Grade V Subarachnoid Hemorrhage (SAH) from a ruptured brain aneurysm. It is amazing how quickly (and slowly) 9 years passed.
I found no better way to celebrate that to eat Pho with a long-time friend/former boss and drink young coconut juice from the coconut 😉 Happy “Annie”versary to me!
September 2, 2016
I returned to work this week following the two recent brain surgeries. It is exhausting and my brain hurts from the sustained attention. Thankfully, I am starting off by working a 5 hour day (instead of an 8 hour day) to rebuild my tolerance to work.
I am resting a lot over the 3-day weekend to recuperate from returning to work, and also continue the healing from brain surgeries.
September 8, 2016
I had my quarterly injections of 700 units of Botox to reduce spasticity on my affected side. I was expecting less in the quantity of units from my interpretation of less spasticity after brain surgery. My muscles causing the flexor synergy patterns were still very overactive. The doctor and I surmise that I may have had more partial seizures than I knew, which may have triggered the high-level intensity of my spasticity.
My hope is the Botox will be more effective than before, if in fact the seizures were the aggravating cause of my spasticity. This will be interesting to watch over the next few months.
September 16, 2016
I realize that I am really struggling after returning to work for the last two weeks at a 5-hour, 5 day a week schedule. I commute via bus and need to rest for 3 to 4 hours when I get home, making it difficult to sleep well. My brain cannot handle this type of aggressive schedule, yet. I have always pushed myself very hard throughout my brain aneurysm recovery.
My sister always said I am a “tough cookie” to my own detriment. 😉
My doctor reminded me “Life is a marathon, not a sprint.” She also reminded me that I had two major brain surgeries in the last two months. I guess it takes about 6 months after brain surgery to build stamina.
I realize I need to put my health first for the long haul. 🙂 I will not get any prizes for returning to work too soon, leaving me less efficient on the job and useless the rest of the day. What type of life is that? My doctor proposed a different type of schedule. I am waiting to see if work will approve.
October 2, 2016
I am a tough cookie with a strong work ethic. I am beginning to tolerate the 5 day a week work schedule, still exhausted, but improving. It reminds me how resilient the brain is.
October 14, 2016
Post bleed/surgery my head was always very sensitive to atmospheric changes. My head feels all clogged up because we went from 70 degree weather to our first fall rainstorm. Who needs a barometer? lol 😉
October 30, 2016
It seems that everyday I work, I also have a medical appointment. I am exhausted and realize that I do not have enough mental capacity to walk with intention (or build in fun or go for a walk). All those immediate health benefits from brain surgery (Review my July 27th post) under a no work/ low stress/ recuperation mode have almost all disappeared since returning to work. My doctor and I determined that I returned to work too soon after surgery (6 weeks). Now that I returned, I am in general survival mode. Doing things with intention is vital for neurological pathway rebuilding. Did my Gung Ho spirit and tenacity end up shooting myself in the foot to be my best healthy me? Life is a marathon. I have to learn not to rush and listen to my body. Not an easy lesson to learn when your very determined and have an undying work ethic, both a blessing and a curse 😉
November 4, 2016
I found out that my neurosurgeon from my 2007 life-saving ruptured brain aneurysm surgery is going to a new medical center next year. I have mixed emotions. I am super happy for him, but feel this weird sense of loss that he will no longer be following my case for my 5-year “make sure no new aneurysms grew” brain check ups. Change happens and new chapters begin, I guess?
November 22, 2016
Interesting? I had an abbreviated peripheral vision test at my annual eye exam. There seems to be some improvement in the visual field of my left eye? This test is not the “gold standard” for visual field testing. I will have to go to my neuro-ophthalmologist for that, (maybe summer 2017, one year after my most recent brain surgery?). I like the hopeful prospect of visual field improvement 🙂
December 10, 2016
A couple days ago I received 700 units of Botox injected in my affected side to relax the flexed muscles that limit my movement and result in normal movement (like walking on the side of my foot). Although the injections are not curative, they do provide some relief. My friend commented that I looked like I was walking better 🙂 Yes!
Aneu Day 2017
January 1, 2017
Happy New Year!
Enjoy each challenge, each opportunity, and each accomplishment.
With my visual field cut and left-hand fine motor skills limitations, it is difficult for me to apply makeup, especially mascara. In the last 10 years since my injury, I may have struggled with makeup once or twice a year…a big separation from the pre-bleed me.
Last week I discovered eyelash tinting 🙂
This is a game changer. I feel I can reintroduce a little more eye definition in my life 🙂
January 15, 2017
Okay, so the Botox injections for spasticity did not work well. I will be exploring surgical remedies for my twisted foot from too much muscle tone. My neurologist informed me it is better to remove stress; therefore, I will look for less stressful work. When I was completely off work for recovering from surgery, my body felt better. This year will be one to refocus on me and my health, allowing me to help others better (the nature of my job is human service).
I employ alternative and integrative medicine/therapies like acupuncture, my osteopath, and chiropractic. I just discovered foot reflexology…AMAZING, relaxing and peaceful. I feel better, muscles more relaxed, kind of sleepy – a three-day weekend helps, too! I will try to incorporate more foot reflexology in my life 🙂
February 28, 2017
Busy, tired, stressed and exhausted. In the next few weeks I have a few interesting appointments going on. I have my foot surgery consultation & my 5-year check my brain check-up.
I hit an empty-word wall at work. I use speech-to-type software called Dragon Naturally Speaking. My articulation was sloppy today from mental exhaustion and Dragon typed some interesting things that came out of my mouth. I sometimes wish that Dragon would type my intended thought when I come up empty for words. The more I thought about it, that would freak me out a little bit, lol 😉
One thing I added for my well being is foot reflexology. I give the treatment a big thumbs up.
March 11, 2017
I am pleased with the second opinion of potential helpful surgical fixes for my affected lower leg equinovarus contracture deformity. This one is far less invasive and involves tendon lengthening and tendon releases (rather than tendon transfers). One-week off my feet and then walking cast/boot & physical therapy. I wish I could have it tomorrow, except a neighbor down the road undermined the street and it is now closed to vehicle traffic (and difficult to navigate as a pedestrian).
April 17, 2017
In an attempt to find out more information about why I sometimes wake up with hydrocephalus and a terrible hangover type headache, we did a shunt function study where they inject a radioactive tracer in the shunt to see where it goes (hopefully down the shunt tubing and out at the end in the belly region).
News Flash… neurosurgeons did not go to cosmetology school, lol 😉 He shaved a big patch of hair around the shunt valve and left the rest of my hair!
Question, should I work the look and make it even (i.e. bi-level haircut)?
Now, I have to be patient and await the results…patience is not my best virtue 😉
April 26, 2017
Great news! My VP shunt works as it is supposed to 🙂
May 7, 2017
We walked for Brain Aneurysm & AVM Awareness today in San Francisco. Honoring Survivors, Caregivers, and in Memory of. We had a big turnout and great celebration at the 12th Annual Walk!
June 10, 2017
I attended a Gala at the Fairmont Hotel in San Francisco to benefit 3 foundations that support brain aneurysm research & awareness (The Aneurysm & AVM Foundation; Mission:BRAIN; and the Joe Niekro Foundation).
My neurosurgeon, Dr. Lawton, received a prestigious award.
Zach Braff (a.k.a. Dr. John Dorian from the TV Show Scrubs) emceed the evening. It was a night to remember! 🙂
June 12, 2017
I had the tendons in my affected foot lengthened. The potential outcome of this surgery may be the ability to step on my foot without it turning on its side. I have hope.
June 19, 2017
Non-weight bearing on my left foot is challenging, especially with residual left-sided weakness/paralysis. No crutches for this gal! I use a walker, knee scooter, and wheelchair.
Stairs are a creative use of paper bags, foam, and muscle strength. No surprise my arms are sore. Even lifting up my casted foot is a challenge. I get my walking cast next week! I am so excited.
June 26, 2017
I am in a walking cast 🙂 This is what my incision looks like post- achilles-tendon, posterior tibialis, and toes tendon lengthening surgery. Not as bad as I thought! I have some bruising around my toes/forefoot. I ditch the cast at the end of July 🙂 Then it is physical therapy to learn how to walk with my new foot.
August 05, 2017
I am out of the hard cast and now in a walking boot. My new foot is interesting? Not quite sure how to use it. My foot seems to be laying flat and not on its side when I walk. I start physical therapy soon.
Of course, me being me 😉 I had to test out some steps inside the house without the boot and some mini knee bends. I think with medical guidance from my PT, I’ll learn to use my foot for the first time in almost 10 years.
August 15, 2017
Ten years ago today, my brain aneurysm ruptured. Wow. I spent the morning getting an MRI at the hospital which performed the lifesaving neurosurgery. The nurse who started the IV was perceptive and recognized my annie-versary. I gave her the cliff notes version and she stated she felt chills as I described my injury. So many health care professionals have made a difference in my life.
I am still trying to work through some souvenirs post-very-severe-brain-bleed. Sometimes I feel like I have aged well-beyond my years.
September 8, 2017
I am out of the walking cast and wearing regular walking shoes (for the first time in 10 years!) 🙂 🙂 🙂 My surgeon gave me a cushioned heel cup as a transition piece as I get used to walking on my heel again. I am still trying to get used to my new foot. it is awesome and crazy weird at the same time 😉 I am learning how to coordinate my leg muscles to walk.
September 22, 2017
I am recovering from VP shunt surgery. The surgeon opened up an old scar and exchanged the VP shunt valve for a new & improved one that would drain more cerebrospinal fluid. We hope the new shunt will result in reduced quantity of yucky headaches.
Wish me luck.
October 12, 2017
I feel so scientific. I had the unique opportunity to have my gait analyzed by Stanford Gait Analysis Clinic. I cannot wait to view the results from all the data they captured.
November 23, 2017
I, like a few others survivors of severe brain bleeds I connected with today, feel super thankful to be here and have tons of gratitude for those in our journey post-bleed. My new foot and new shunt are doing well. I squeezed in a nice walk; my foot cooperates. I wear regular walking shoes now (no special orthotic shoe). 🙂
Aneu Day 2018
January 27, 2018
I had the pleasure of watching a 75-minute one-woman play in San Francisco called My Stroke of Luck, by Diane Barnes (to my right in the photo). She captures her experience with brain aneurysm rupture, recovery, discovery in life, and weaves in dimensions of family, healthcare, through her lenses of survivor, mother, patient, and Medical Doctor. Here is a link to Diane’s story: My Stroke of Luck
March 11, 2018
After getting many a rain boot stuck on my affected foot in multiple stores, I finally found rain boots with zippers on the side and lining on the inside that helps my “funny foot” glide in and out of the boot.
Phew! I had looked for months. I wish I had videos of the sales people trying to get the boot off, lol. My foot does not feel and does not cooperate with shoes. An interesting challenge to say the least. I am so thankful I finally have new rain boots. 🙂
April 8, 2018
I took a three-day trip to Washington DC to visit friend and my old neighborhood. I even caught a snow flurry! As luck would have it, I caught the cherry blossoms at peak bloom(that’s a big deal). Awesome trip! My friends commented on well I was walking 🙂 It is nice to be reminded that improvements from severe brain bleed are possible, even 10-years later!
May 6, 2018
The 13th annual Walk for Aneurysm and AVM Awareness. A perfect, yet cool, day to bring attention to such important medical conditions that drastically impact the lives of many when they rupture.
May 25, 2018
I kept losing the pinball with my left flipper, lol 😉 Who knew that playing pinball was so challenging?