Welcome to Recovery and Aneu Day 2009
This page has my early recovery and “Aneu Day” updates from 1/15/2009 to 12/31/2009, circa 1 year and 5 months to 2 years 4 months post injury.
My Aneu Day 2010+ page has updates from 1/1/2010 forward.
I feel amazingly blessed and lucky to have a second chance at life. Thank you Dr. Lawton and UCSF, for giving me that chance.
I do not aspire to be the person I was before. I am thirty pounds lighter, smoke-free, alcohol-free, eat ultra-healthy, and overall, I am the healthiest I have ever been, apart from my acquired neurological disorder.
Since my aneurysm rupture I have noticed the following changes in how I perceive life:
1) I worry less.
2) I have more appreciation for everything.
3) I am easily amused.
“You don’t get anywhere different by doing the same thing.”
I am looking forward to “Aneu” Day. I am currently working with Ca Department of Rehabilitation (DOR) to go back to school and get my Master’s in Vocational Rehabilitation from Fresno State. I think a good “halfway house” for an independence trial will be living in the dorms. I have already applied to the University. However, I was wait listed for a few months for receiving DOR services due to the State budget.
As my Aneu Day evolves, I will update this page with the highlights. I am definitely “Aneu” Gal.
2007 Surgery: external ventricular drain placed
2007 Surgery: craniotomy (technically, I had a hemicraniectomy ), aneurysm clipping, blood clot evacuation
2007 Surgery: bone flap replaced, VP shunt installed
2008 Surgery: vitrectomy (eye juice , see vision page).
3/09 to present (every 3 months). Surgery: Botox injections for lower and upper left leg and left arm movement disorders due to spasticity and flexor synergy patterns.
2012: Angiogram (Arteriogram): 5 year post surgical follow up to see if new aneurysms developed. “Clean as a whistle!” said my neurosurgeon. Next arteriogram to visualize blood vessels in brain. Save the Date: next angiogram in 10 years…2022!
I just completed a baclofen pump trial in January 2014. The results look and feel promising. I have a prep-op and get scheduled for the installation. Excited about the potential benefits and reduced spasticity?
03/2014 – Intrathecal Baclofen (ITB) pump installed! Yes! This pump is inserted in the lower abdomen and a catheter goes to your spinal column and delivers muscle relaxant into your cerebral spinal fluid. The doses and rate are still be worked on. I just had it installed and the effects are good so far. 🙂 Run a marathon someday? 😉
03/2015 – Intrathecal Baclofen (ITB) removed! The pump only worked for 2 months out of the 12 months I had it. 3 serious complications: 1) hematoma at the surgery site; 2) Medtronic telemetry device programming error lead to an overdose of baclofen and, 3) the catheter developed a serious kink (90 degree bend), so I was not receiving the appropriate amount of medication. Instead of replacing the pump, I decided to have it completely removed. The risks outweighed the benefits. Now, back on Botox, Physical and Occupational Therapy for limb spasticity relief.
11/2014 – I had a couple significant falls 2013 & 2014 where I broke bones and decided as a measure of precaution to get a walker. No falling for this gal. I researched and was selective. This one has big wheels, small turning radius, and is stylish!
I walk it! No falling for this gal. Shoe Wedge
I just got a shoe wedge to prevent me from rolling on the side of my foot. I still twist my foot in my shoe, but it prevents me from rolling over it.
Early Recovery Timeline:
2007 Neuro ICU & Neuro Floor UCSF
2007 Brain Injury Program Alta Bates
2007 – Present Outpatient Therapy
Neuro ICU & Neuro Floor UCSF
After the surgery I was transferred to NeuroICU for recovery and for vasospasm, hydrocephalus, and intracranial pressure watch. A Vasospasm is when the blood vessels in the brain get irritated and constrict blood flow, leaving a very good chance of experiencing an ischemic stroke. Blood in the brain can also trigger seizures.
I had a lot of tubes sticking out of me. Postoperative day two, they removed my breathing tube. I remember the first question they asked me was, “Do you know where you are?” Confidently, I replied “Santiago.” I had planned on taking a trip with my parents to Santiago, Chile in November. The brain is very uncomfortable with lapses in consciousness so it will respond with a “confabulation” (logical assumption to account for the missing time period).
I started to talk using single words or nodding my head to communicate. I would move my right side spontaneously, while my left side remained plegic (paralyzed).
I was heavily medicated for the pain. Dilaudid, a morphine based medication, was an incredible pain killer. The UCSF Neuro Team did everything they could to make me feel more comfortable.
I made gradual improvements. By the last week of August I began becoming more verbal. I lost my maturity and talked like a little girl.
I had some crazy and scary dreams. Here are some of the highlights:
I was convinced that one of the nurses harvested my kidneys and sold them to pay off her student loans.
I thought I smelled marijuana on my nurse’s gloves. I also thought she worked for my employer. I told her to clock out and get drug tested.
After hearing the presidential candidates’ debate on the radio, I went to sleep and thought my Dad was running for president.
I demanded to have my laptop so I could take care of work that needed to get done.
I believed I was on the Hospital Ship and the pirates were coming.
You know a survivor is getting better when she knows she shouldn’t be peeing and pooping in a bed. I pulled out my catheter because I was so mad I could not pee on my own. Around that time, I started using a bedside commode, which I must say, is a bit of a challenge with my left side not helping. Friends or family would help me to and from.
My head with all the staples started to itch like crazy. All I wanted to do was pick at it. I kept on getting yelled at from everyone to stop picking because I would cause an infection since germs travel in my finger nails.
The aftermath from the VP shunt surgery was very uncomfortable. The incision was done on the right side of my belly and it felt like someone threw Alka Seltzer in there. My right abdominal muscles with the incision were all I had to work with to sit up because my left ones were paralyzed.
I did some speech therapy, primarily a swallow test to see if I could safely swallow my own food without choking.
I also did some occupational therapy and physical therapy although I do not remember exactly what my therapists had me do but it involved following commands. I was able to follow instructions with my right side yet; my left side was still plegic.
Everyone felt I would benefit from rehabilitation therapy. My Mom checked out both programs available in our area.
I was transferred from UCSF to Alta Bates Brain Injury Program. I was ready to make lemonade with the lemons given to me. I arrived close to 4pm on 9/11/07. I was super bummed out because I expected to immediately start therapy and have a cheerful committee with balloons welcome me to rehab. That night at mealtime, I was in my wheelchair sitting next to a guy who looked like Morgan Freeman. He was tapping his fingers and told me to tap my fingers all the time, as often as I could. I looked at my dead hand and it would not cooperate. Little did I know, I was starting to rebuild the neuro pathways just by thinking about moving my fingers.
I was assigned to a team which included:
- Physiatrist (rehabilitation doctor)
- Nurses, PCAs (Personal Care Assistants)
- Neuropsychologist (for cognitive and emotion),
- Speech Therapist (ST) (speech & cognitive)
- Occupational Therapist (OT) ( hand & activities of daily living)
- Physical Therapist (PT) (balance and walking)
I was evaluated by each discipline so they could develop an integrated plan for my recovery. PT and OT are interrelated so sometimes I would have a “co-treat”. An immense amount of time was spent “activating” my left side and learning how to safely “transfer” from the wheelchair to the bed or the toilet. My left side was highly uncooperative but, over time, my finger moved, I was able to place weight on my left leg. Activating my left side involved series of exercises that would build on each other.
Since my injury affected my non-dominant side I had to learn to use my non-dominant side for dominant activity. It’s natural for the unaffected side to want to take over and I developed some compensatory strategies. Therapy aims to minimize the compensatory strategies and have you relearn how to do everything you once took for granted.
As my deficits were uncovered during therapy, my therapists would explain the deficit. If I knew something was wrong, then I would learn what I needed to do to fix it. My deficits were obvious to everyone, except me.
A typical day in rehab was breakfast at 7:30am wheeled to the dining room by a nurse or family member, select the next day’s meal choices with the ST. Back to my room for OT to learn how to safely dress myself with a floppy left side, ST, PT, lunch, maybe Rec Therapy, another OT and maybe PT, then dinner. I was fatigued but, highly motivated to do anything I could to get better.
Every other day, I was allowed a shower. I would transfer to a shower chair and, get wheeled down the hallway to one of the shower rooms. PCAs or Nurses would help scrub me, especially my scabby swollen head, shave my right armpit hair.. I looked forward to my showers. Then, I would get tucked in and covered with heated blankets just to do it all over again the next day.
I would get so frustrated when a 75 year old patient would be walking up and down the hallways before I even walked.
By the beginning of October I had taken about 5 steps in between parallel bars. That was the best feeling. I had not walked since August 15th.
By the end of October, I was walking about 30 steps with the assistance of a cane and an AFO (Ankle Foot Orthotic). I had also learned how to ascend and descend the stairs.
I was discharged from Alta Bates with a wheelchair, a cane, and an AFO to continue my OT, PT and ST in an outpatient setting.
At this point, the best recipe for continued recovery is outpatient therapy, doing the home exercise program they prescribe daily, and then challenging yourself by doing a variety of new things. Remember, something new, can be something you used to do pre-injury and have not done since the injury. Also doing a lot of bilateral activities, like washing dishes, helps your affected limb begin to gain its own identity, rather than being the “helping hand”.
It is very important that your Outpatient OT and PT have specialized in NDT (Neuro Dynamic Therapy) or, PNF (Proprioceptive Neuromuscular Facilitation). To graduate, an OT or PT must take at least one Neuro Class. However, you want a therapist who takes continuing education in Neuro or, has specialized in Neuro.
I was discharged from ST in February ’08. I continued to work on ST on my own by playing word games, doing logic and deduction puzzles, reading, listening to books on cd, planning and organizing fiscal matters and, researching topics on the internet. I purchased the Brain Fitness computer program from Posit Science to help with auditory and visual processing.
At first I tried an Outpatient Rehabilitation Group that visits you in your home. I was not very happy with the therapists. I decided to move back in with my parents since they are semi-retired and available to help get me to therapy and doctors’ appointments. I transferred my care to Alta Bates Outpatient Therapy. What’s great about a hospital outpatient setting is you have extra sets of eyes adapting your therapy program. It takes a village.
I had regained a lot of function; however, I needed more of a challenge to get me to the next level. In April 2008 I transferred my care to UCSF Physical Therapy at Mission Bay. Dr. Nancy Byl has really been creative in designing a PT program which also incorporates OT elements that has taken me to the next level. When I started at UCSF Mission Bay I could not hold a glass of water with my left hand and turn my head without dumping the water on myself. I could not stand balanced on my unaffected leg and turn my head without falling. I still have lingering deficits but, my goal is normalcy and reducing the chance of injury to my unaffected side from abnormal gait. This fine tuning I am doing takes a long time and a lot of repetition.
I had to find a physiatrist to oversee my rehabilitation. I tried a few out but, they were either not a Preferred Provider or, our personalities did not match.
I finally found a extraordinary physiatrist at UCSF Neurology, Dr. Gary Abrams. He really understands neurological deficits from CVAs (cerebrovascular accidents) and the steps that need to be taken to overcome these deficits.
Because of my significant movement disorders on my affected side, I was referred to a fantastic movement disorder specialist, Dr. Glass. He administered 265 units of Botulism to paralyze the six major muscle groups responsible for my toe curling and foot inversion.
I had in depth cognitive testing administered by a talented Neuropsychologist, Dr. Tatjana Novakovic-Agopian. I wanted to learn of any hidden cognitive deficits that would impact my ability to return to work someday and regain functional independence.
I also pursued acupuncture, chiropractic, vision therapy, massage therapy and hyperbaric oxygen therapy.
Throughout my rehabilitation, I have been very determined and remained very positive. I have only really had three terrible days of crying and self pity. Like my employer used to say “Negatism breeds complacency”.
Overall, I feel very lucky that it was my brain that was injured because the brain wants to heal and has neuroplasticity (the brain’s ability to reorganize itself). I may have some permanent deficits but, I know the non-permanent deficits will continue to get better the more I challenge myself and vary my routine.
Assistive Device Timeline:
1)August ’07- February ’08 Sleeping braces ( a hard boot with fuzzy lining and a kickstand helped keep my foot flexed and rotated out, rather than dropped. I wore a hand brace or a pillow tied around my hand to prevent it from clenching. I still wear pedicure toe separators when I sleep to discourage toe curling.)
2)October ’07-March ’08 AFO (Ankle Foot Orthotic) Hard plastic cast thing that fits in your shoe and holds up your ankle.
3)September ’07- February ’08 Wheelchair
4)October ’07- July’08, May ’11 Cane After repeated falls in 2011, I am back using a cane. However, my doctor would prefer a 4-wheel walker.
5)Voice activated software, to help with typing since my affected hand has trouble typing.
6)February ’09 The Walk Aide System This device attaches to my calf and sends neuromuscular stimulation to bring my foot up and out during the swing phase of my gait. No more foot drop.
7) April ’09 Sleeping Brace I got a very light weight dorsal night splint and wear toe separators. Since my achilles heel is very tight, I want to get as much as I can from the paralysis of the Botox. If I am able to stretch my achilles heel by keeping it flexed and straighten my toes while I sleep, it can only help with regaining range of motion and dorsiflexion for more normal gait.
8) May ’11 Orthotic This helps reduce spasticity and abnormal foot position from walking on an inverted foot.
9) December ’11 Ankle Foot Orthotic (AFO) Instead of a tendon transfer surgery, I am trying another AFO with the botox so I can prevent walking on the side of my foot (equinovarus contracture deformity (club foot).
AFO: The afo attaches to the fashionable shoe…pretty nifty.
Front view. I am thankful my pant legs fit over it.
Aneu Day 2009
January 15, 2009
I am 17 months post injury today. I had a big day. I picked up my train tickets for my train trip. I went to the DMV to apply for a CA ID Card so that I would have a valid form of government issued id that looked like me. I applied for a Regional Transit Card that will enable me to receive reduced transit fare for being disabled. I also unveiled this weblog. I have written VP Biden and have not heard a response; I know he’s very busy with the inauguration on the horizon. Now, I’m thinking about my “Meet the Veep” marketing campaign that will avoid secret service involvement 🙂
February 10, 2009
I’m so excited, in 5 days I leave on my train adventure.
My hair is getting long enough that I was able to put my hair in a little ponytail a few days ago. I’ve been going to the gym 3 days a week to complement my physical therapy program. Fresno State communicated that I will have housing. Now, I have to wait to see if I got accepted into the University and the Voc Rehab program.
I had an EEG yesterday because I had a loss of consciousness (LOC) with orientation issues. They placed 27 electrodes on my head and measured my brain’s electrical activity. The brain waves on my right side were definitely slower. I felt the LOC was very scary; the light switch went out without warning. I hope the EEG results show that everything is okay.
My “Meet the Veep” marketing campaign has not had any response, yet. I will follow up with phone calls to my written inquiries.
I had a consultation to have Botox administered in my toes and affected leg. The hope is to paralyze the muscles that curl my toes and paralyze the muscles that rotate my leg inward. Since it is an expensive procedure, I will have to wait for insurance to authorize it.
I picked up the Walk Aide System yesterday. It is a cuff that affixes to my calf muscle that has electrodes which activate when my tibia gets into a certain angle. It stimulates my nerve to bring my foot out and up. I’m breaking in the device about thirty minutes a day and, gradually building up the time I wear it. No more foot drop. It’s a pretty nifty device.
Today’s the day! 🙂 I leave on my 30 day train adventure to Seattle, Philly, Atlanta, Santa Fe, and Santa Barbara. This morning I lay in bed listening to the rain and reflecting of how far I have progressed in the last year and a half.
I’m still working on the meet the Veep campaign. I tried to enlist my congressperson and senator to assist me. My Senator’s office was rude and seemed to mock me for even asking. My Congresswoman’s office was very nice and responsive. I was pleasantly surprised with my phone call to the White House. The switchboard operator was super nice and very helpful. Vice President Biden and his staff are overseas so I will try calling again in a few days. Wish me luck!
I do not have a laptop…if I have access to a computer I will try to update while on my adventure. Otherwise, my first priority upon my return will be my update and moderation. See you soon! Love, Aneu Gal
February, 18, 2009
Greetings from Seattle! I love the train. We were a little delayed because our train hit a pedestrian outside of Sacramento. I woke up wondering why we weren’t moving and thought that perhaps, they decided to dettach my car from the train…crazy, I know. Three people got evicted from the train at various stops and waiting for them were police escorts. One individual was smoking cigarettes in the bathroom, another was smoking reefer in the bathroom, and the other was apparently really rowdy in coach. Smoking on the train is a federal offense and, I was happy that Amtrak properly dealt with the situations to increase the comfort and experience for the rest of the passengers.
I met amazing people in the dining car. When I slept, I slept so well. I think the vibration from the train will help my nerves regrow 🙂 The scenery was gorgeous. All the Amtrak people are so nice! I’m having such an awesome time. My friends and their son are so much fun to hang out with. We went to the park yesterday and saw the troll under the bridge. Signing off for now. Enjoy your day!
February 24, 2009
I took Amtrak’s Empire Builder premiere train from Seattle to Chicago. A 45 hour journey through Montana’s Glacier National Park, North Dakota, MinneSNOWta. Wow, we went through some very beautiful country. I can’t wait to share my photos with you. I left Chicago an hour later on Amtrak’s Cardinal to Philly.
I had the priveledge to meet Bob Peters, an Amtrak conductor who has worked for Amtrak for 47 years, 30 of which has been on the Cardinal. He interpreted the scenery and told me stories. Once I return and make my Aneu Gal Train Travelog, I will share my photos and stories.
It was 15 degrees yesterday. Last night we spent four hours in the emergency room after my friend’s 11 month old son fell out of a shopping cart on his head. Tomorrow, we have an appointment with her son’s ear surgeon for a pre-op for a cochlear implant. After, we will be headed to the Liberty Bell, the Reading Terminal and the stairs Rocky ran up. Then on Thursday, I leave for Atlanta.
This morning, I was able to leave a message on Vice President Biden’s scheduler’s voicemail. I consider leaving a voice message a success and, one possible step closer to meeting the Vice President 🙂 I will continue to call the White House daily until March 4th to follow up. Wish me luck! I hope I can meet the Vice President…that would be so neat, even if he could spare five minutes.
I’m having such a wonderful time. We live in such a beautiful country.
February 27, 2009
Good Morning, and greetings from Atlanta! As of this morning,I have traveled 4,938 miles and, spent 112 hours and 27 minutes on the train. Yesterday, I left Philly on Amtrak’s Crescent train headed to Atlanta. In a few days when I leave Atlanta, I will take the Crescent the opposite direction to DC. It will be great to see the scenery I slept through when I retrace my steps. I enjoyed conversing with my train attendants, conductors, and other passengers. I am having so much fun on the train and, seeing our country is amazing. I feel a hundred percent more patriotic from my visit to the Liberty Bell and Independence Hall in Philly. I can’t wait for my six hour DC visit. I will have to at least see the US Capitol. I hope my visit with Vice President Biden comes together.
My friend’s Dad picked me up at the train station. It’s raining now and, is expected to storm like crazy. I can’t wait to see Alycyn when she gets off work. She hasn’t seen me since I was in ICU at UCSF, all big and swollen headed, stapled, drooling…it will be a nice reunion 🙂
Have an incredible Friday! Signing off until the next update.
March 1, 2009
It’s snowing, lightning, and thundering in Atlanta. We were going to try to see Martin Luther King’s grave and the Ebeneezer Church but, while having breakfast at the Waffle House we wanted to see what the weather was going to do. I’m so glad we decided to go home and stay inside 🙂
March 3, 2009
I woke up this morning to something I have never seen before…freshly birthed puppies. Quiara dropped 5 puppies, all different colors, almost like an appetizer sampler. She’s still licking them clean.
Sadly, I have not seen anything in Atlanta and only saw Alycyn for 180 minutes my whole time here. She works two jobs, is 7 months preggers, and was moving. I have cherished every minute I have spent with her. In College she was my human biology lab partner and cardio kickboxing partner.
Yay! Tonight I board the train headed to see my sister and nephew in Santa Fe. However, there is no direct route from Atlanta so I stop in DC tomorrow and then change trains in Chicago before I can board the Southwest Chief to Santa Fe. I’m excited that I will have about 6 hours in DC and Chicago to explore a little on my own. Amtrak put together walking maps for these cities and fortunately there are some neat sites to see near the train stations, like the Capitol and the Sears Tower.
All Aboard! 🙂
March 7, 2009
Greetings from Santa Fe, New Mexico. March 4th, I arrived in DC at 10am and decided to walk to the Capitol from Union Station. I accidentally walked into eight people as I was trying to exit the station. It was crazy busy and very confusing to navigate. I made it to the Capitol but, it was closed to staff only because the Veep was in there meeting with the Prime Minister, Nancy Pelosi and other such people. I do not feel troubled that I did not get to meet the Veep this trip, especially since he was conducting official Veep business. I’m certain, one day, I will get to meet the Veep, just not this trip.
On March 5th, I left DC headed to Chicago. When I arrived in Chicago a few of my train travel companions and I went to the Sears Tower. 99 floors up and, a truly magnificent view. I, literally was on top of the world! 🙂 Because I did some walking, I got two blisters on my affected foot…Good thing I have sensory deficit…the blisters were not the least bit painful. I guess some deficits have some hidden blessings…. 🙂 Mosquito bites do not itch on the left side of my body.
I left Chicago that afternoon and made it to Santa Fe yesterday afternoon. It has been so great to see my sister and nephew. Last time I saw them was May last year and I was still walking with a cane.
I stay here for a few days, then, I’m headed to Santa Barbara and return home on March 14th. I don’t want my trip to end…I’m having such an amazing time. Who knows, maybe I’ll work for Amtrak?
I hope your days are fabulous! Until my next update, take care!
March 8, 2009
I had so much fun yesterday! My sister, nephew, and I woke up and watched Finding Nemo. That is one of my favorite movies. Nemo, like I, have a “lucky fin” 🙂 Then, we all headed to have gelato in downtown Santa Fe’s Plaza area. Then we drove through Canyon Road which is home to some magnificent art galleries and studios. We took some photos posing like the sculptures we viewed….funny photos…I can’t wait to share!
My sister and I went on a hike. I walked 2.58 miles in about 3 hours with beautiful panoramic views of Santa Fe. The terrain was okay, however in some sections it was a little rocky and uneven. My ankle looked a little swollen so I must have rolled it. I used the Walk Aide for about half the walk and then my muscles being activated felt too fatigued. I turned it off and I walked normal a little 🙂 Because I was concentrating so hard on walking, I had very poor arm swing. I feel so accomplished I hiked 🙂
Tomorrow we are headed to Ojo Caliente, a rustic spa known for their healing pools and miracle water 🙂 I’m willing to see what healing and other miracles shake from soaking in the famous pools. Think healing!
The rain and the wind moved on. It’s a little crisp but, a glorious sunny day today.
March 9, 2009
It was snowing this morning. We woke up early and took my nephew to school and then headed to Ojo Caliente. We soaked in their legendary mineral pools of arsenic, soda, iron and drank their healing lithia water. I feel so relaxed and peaceful. The sun came out. Then we went to a tea house and had chai and some oatmeal.
I’ve had a truly amazing day. Tomorrow I board the train towards LA, then to Santa Barbara for a few days.
March 12, 2009
Greetings from Santa Barbara! The sun has just decided to peek through. I went to the gym this morning with my friend Perrin. Later we are going to stop by my previous employer. Santa Barbara was my home for a few years while I attended UCSB. Perrin is my only friend from college that was able to stay in Santa Barbara after graduating. When she recalled her experience viewing me for the first time in ICU she got very misty eyed. She checked with the nurses at least 10 times to confirm that the really swollen headed girl she was looking at was in fact me…because she did not believe them.
March 15, 2009
I returned back to my parents’ house late last night. I traveled 9,164 miles and 199 hours by train…it was an amazing trip. I am easing into the idea that my 30 day train adventure is complete…or, is it? I am so close to 10,000 miles of track, I am thinking I might travel a little more before the end of the year. I wonder if I reach 10,000 miles or even 15,000 miles if I might receive an award from Amtrak? 🙂
I’ve decided to bask in the afterglow of my trip, looking at my photos and remembering…my mail and bills can wait for another day.
On Wednesday, I receive Botox in my toes and, I’m back to therapy. I guess it’s back to reality.
Overall, since I conversed with so many fellow train companions, I feel my communication skills are far superior than a month ago. Yay!
March 18, 2009
Hollywood would be envious! I had 265 units of Botox delivered to the lower leg and toes on my “lucky” side. Once the Botox sets, it will paralyze the muscles that curl my toes and inverts my foot. Yay! I am pleased to report, that I have not swelled up like a can of spoiled vegetables. Botox is the Botulism toxin protein with the infectious part removed.
I am working super hard at organizing my photos. Once I figure it out, I’ll share a visual story of “Travelin Aneu” on my “Aneu Adventure”. Have an incredibly awesome day! 🙂
March 19, 2009
Please be sure to look at the links. I have added a new link of my photos from my way awesome train adventure. Enjoy! 🙂
The Botox in my toes is starting to set, my perma-curl toes are starting to relax. Yay! Now my toes don’t look so gnarled.
March 23, 2009
Oh my! It’s been one of those days. This morning I took BART, public transit, to my therapy. Some guy pushed me aside and sat in the only available disabled seat…I do not think he was disabled. As I walked to an available seat, the train took off and I fell, hit my head and got rug burn on my knees. My therapist was late. I spent the last half of the afternoon trying to decipher Cal-Cobra versus disability extension of benefits with my Cobra administrator and insurance providers. I feel more confused than when I started! I think I should spend the rest of the day thinking about my next train adventure 🙂
March 26, 2009
I’m Boris’ Au Pair at the moment. I’m house sitting and canine sitting. We had a lovely walk this morning…everything is in bloom! Boris and my other canine companions were a very important part of my recovery. I pitched my train adventure story to Sunset Magazine. I’ll be off to the gym this afternoon. It’s a beautiful day! …like one of those days, when I was employed, I would be tempted to play hooky 🙂 Now, that I’m on a forced leave of absence, I’ll be sure to enjoy every minute of the day! I hope you do, too!
March 30, 2009
Compared to last Monday, this has been a very good day! On the BART train, a nice man reading John Locke’s “Concerning Human Understanding” asked if I would like the disabled seat and, he vacated it for me 🙂 My Case Manager from Blue Cross authorized another 8 weeks of therapy. Therapy was awesome today. I purchased a new lightweight overnight splint that will keep my foot in dorsiflexion while I sleep. I got an appointment with an OB that wasn’t accepting new patients.
I provided some editing/troubleshooting for my employer at the time of injury, even with me being three hours away and 125 miles. My employer was so incredibly awesome through my whole circumstance. The company sent me the largest and most beautiful bouquet of flowers. He and his wife flew down and brought me Cover’s Berry Pie and their fresh Apple Juice when I was still in ICU. 🙂 The Covers make amazing pies. Even though I can’t physically be there, I’m so happy I can help out and do something for my previous employer.
With the type of day I’ve had, I feel like I should buy a lotto ticket 🙂
April 1, 2009
I volunteered to be studied by the UC Berkeley Neuroscience Department. I figure if I can help these neuroscientists understand something new by studying my brain that the future brain injured might benefit. Plus, I learn a lot about the brain as a byproduct of participating. I wonder if they will give me an honorary doctoral degree 🙂 ? Currently, I’m participating in two studies, one about attention and the other involves reaching. Overall, pretty neat….I feel like I’m on the cutting edge of neuroscience 🙂
April 3, 2009
Last night at my UCSF Aneurysm and AVM Support group, I had such a treat! I got to meet two lovely miracles, Ann and Mari, who wrote comments on this blog. It was so wonderful to meet Ann and Mari.
April 6, 2009
Today is my biological birthday 🙂 I had a nice healthy breakfast, will go for a walk and my parents will take me to dinner. I’m afraid I feel more like the anniversary of my hemorrhage has more meaning to me than my actual biological birthday. August 15th will be my new birthday and New Year’s Day rolled into one day 🙂
In responding to Eileen’s comment on the Aneu Peeps page, I’m reminded just how lucky we are. My friend’s friend in Santa Barbara was hiking in the back country with a group. They were about 3-4 hours in when a guy in their group had a very quick neurological decline and did not survive his ruptured aneurysm. Since there was no cell reception where they were, two were designated to stay while the rest of the group hiked to get rescue. I had lived in the Sierra Nevada Foothills at the time of my aneurysm rupture. I frequently would go hiking and fishing in the back country. Thankfully because my decline happened at work and I had coworkers who realized something was terribly wrong, I’m here on this side of the dirt with all of you. As survivors we’re here! 🙂 And, we all know had one thing been different in how we got help, our outcome wouldn’t have been so lucky…even with our souvenirs
April 7, 2009
Last night, I received a phone message from my rehabilitation counselor from DOR…once I’ve been accepted to the University, I let her know how many units I’ll be taking and when I start 🙂 I’m off the waitlist! Yes!
April 9, 2009
Wow! Today was a very altruistic and busy day. I was interviewed by KGO Channel 7….In the Bay Area watch the 11pm news this Sunday for my cameo appearance 🙂
I donated blood and my medical history for a Familial Intracranial Aneurysm Study. This study hopes to find a gene that may predispose someone to the formation of intracranial aneurysms. If I can help prevent what happened to me from happening to somebody else…by donating blood and researchers finding a connection…they can take as much blood as they need 🙂
Based on my EEG results, I have been placed back on anti-seizure medication 😦
I’m super excited, I have been asked to share my experience with aneurysm rupture and recovery with first year med students Yay! 🙂 🙂
I rode Muni for the first time from UCSF to BART during rush hour! I guess I should take it as a complement that no one gave up a disabled seat for me….I hung onto the grabbar for dear life.
To even out my gait pattern, I’m now wearing jingle bells clipped to my shoes and listening for the evenness of jingling. I sound like Christmas is coming 🙂
I’m exhausted…have a great night!
April 13, 2009
I’m not sure how long this link will work but, here’s my cameo appearance on the KGO Channel 7 News
I had my Walk Aide settings adjusted today.
I ordered free business cards on vista print so when I meet people I can share my web address and story really easily. I was starting to run out of post-it notes 🙂
April 15, 2009
Yesterday, I completed a post-test on an attention study that I’m participating in at UC Berkeley. I’ve shown vast improvement for my capacity for attention 🙂 Yay! I’m still seeing improvements a year and eight months post injury.
I also briefly saw a friend of mine who hasn’t seen me since I was in a wheelchair with a horseshoe shaped scar on the side of my head. It’s definitely confirmation of how far I’ve progressed in my recovery and encouragement to continue being determined that I can continue to improve if I try.
April 16, 2009
Wow, the system DOES work. Last August I filed a Title II Complaint against my hometown police department with the ADA. The Police Officer accused me of being drunk in public based on how I was walking. I told the officer I was not drunk and that I was disabled from an acquired neurological disorder from a traumatic brain injury. I even showed him my scar. He continued to call me drunk and “look, you can’t even walk”. I offered to take a breathalyzer test to prove I had not been drinking because I know I can’t pass any other proprioceptive or field sobriety test due to my condition. I was half paralyzed, I know what it is like to “can’t even walk” and, I take offense to the discourtesy and insensitivity of the Police Officer I encountered. I do not drink…I do not want to risk killing a brain cell that survived 🙂
An attorney from the DOJ called very early this morning to follow up on the complaint I filed. All I want is to prevent a situation like this from happening in the future and accountability for a promise my local PD made me of disability sensitivity training focusing on brain injury.
It’s taken eight months for a response from DOJ but, they responded….following this time line…perhaps in August, I might hear from the Veep? 🙂
April 17, 2009
I know I’ve made such a remarkable recovery and today I’m reminded to never take anything for granted…especially progress. I had two dressing disasters…I put my shirt on backwards and, I tried to put both legs in one pant leg 🙂 I’m also reminded of the Far Side cartoon of “Pants First, Then Shoes” 🙂
April 18, 2009
I woke up with a headache, some swelling around the craniectomy site and felt nauseous. I took some Advil and rested. Now that I’m feeling better I’ll be off to the gym and then will enjoy some of the beautiful weather we are having. 🙂 I hope you all have a supremely fantastic day and enjoy the weekend!
April 19, 2009
Clearly, I’m not ready to put colored lip gloss on without a mirror. With sensory deficit on the left side of my mouth and using my unaffected hand for the application did not produce the desired results 🙂 Anyone want to join the circus with me? 🙂
April 20, 2009
On the way to therapy this morning our shuttle accidentally hit a vehicle that had spontaneously made a u-turn right in front of it. Thankfully no one was seriously injured.
I always prepare a post-it note filled with weekly issues I want to work on in therapy.
At the top of my list was “terminal knee extension” and “heel strike” on my “lucky” side. If you watch the news clip from 4/13, I’m the lady who thinks the Alter G treadmill feels like walking in a pool or, jello. I have reviewed the news clip several times because I can critique my walking as an “observer”. I reviewed my walking , because it’s very hard to be critical of your performance when you’re walking in an air bubble and can’t feel or see your feet and legs in action. I noticed no heel strike and I was walking with a flexed knee…completely unacceptable. My therapist and I devoted a lot of energy today on these specific issues. I guess I need a little video camera to follow me around so I can observe issues I want to work on 🙂 Would anyone like to sign up as my paparazzi?
I feel so incredible…today, for the first time in over a year and 8 months…I ran! 🙂 I ran in the Alter G at 60% of my body weight, at 5.2 mph, with enthusiastic arm swing, and a huge smile. I really felt like a super hero and it felt so liberating to run with long strides 🙂 Of course I did not run very long but, I ran! 🙂
April 21, 2009
I’ve had the song “I ran”, by Flock of Seagulls stuck in my head ever since yesterday 🙂 It’s been miserably warm today. I took a nice nap. I tried uploading a dvd video of what my walking looked like six and a half months post injury to share with you. I need a little more time to figure out how to do that. I’m off to the gym to attend a free seminar on muscle activation techniques designed for people in recovery from health challenges. I hope you had a great day!
The muscle activation technique seminar was very good. I received some immediate results and I think I could receive some potential benefit from trying out a few more sessions. Some of the foundation is doing isometric exercise instead of stretching to achieve similar results.
April 22, 2009
I’m extra thankful today. I saw my fantastic OBGYN Dr. Marilyn Milkman. I had seen her some 15 years ago, moved away, changed insurance and went to college…she agreed to see me again….yay! She is certainly an expert in the OBGYN field. She told me that as long as I have something that resembles menstruation at least six times per year and no further apart than 90 days, and no additional symptoms like pain, she’s not extremely worried. As for ovulation, she could run certain tests or place me on hormones. She had asked if I’m trying to conceive…which I told her I have enough trouble trying to take care of myself, I don’t need to throw crumbsnatchers into the mix 🙂 I feel so happy. Maybe even by next year my pituitary gland might have healed some more and I might regulate or even get PMS again…I’ll take regulation of menses, however, I really like not having PMS…it’s wonderful! Once again, another hidden benefit of my health challenge. 🙂
April 23, 2009
I slept terrible last night. After adjusting to my anti-seizure medication, I was supposed to slowly increase my muscle relaxant that helps decrease my spasticity and clonus. I increased my dosage by 2 mg this morning and with my tossing and turning last night, I feel extremely fatigued…so I re napped after breakfast and have started to emerge with a little more energy. Shortly, I will be off to the gym.
My gym routine consists of 30 minutes on the rowing machine, bridging, abs, weights, stretching, balance, and when the mirrored studio is available, I do some bi-lateral ballet type arm movements or coordination. I also hit the b-ball court and bounce the ball…one day I’ll upgrade to shooting baskets 🙂 I hope everyone is feeling energized today…if not I highly suggest a renap 🙂
Well, at the gym, I felt very deenergized and lasted only about 15 minutes. I decided it was better to listen to my body than to try to force a workout. On the way home, my Dad bought me a soy chai 🙂
Yipeeeee!!! I have to wait for my official acceptance letter from the University but, unofficially I got early word from the Department Chair that I have been accepted to the Vocational Rehabilitation Master’s program at Fresno State. 🙂
Of course I’m a little apprehensive but, super excited! Orientation is August 19th….four days after my second birthday. The phrase “Sink or Swim” never has had more meaning. I’m sure I will excel especially if I pace my program, “Leap and the net will appear.” 🙂 It will be nice to transition from solely a rehabilitation focus to beginning to relive my aneu life. Getting my Master’s degree will be the best therapy to help with the transition. I look forward to sharing with you what successes and challenges I have during this transition. Wish me Luck!
April 24, 2009
My Mom took me shopping and bought me a backpack for school and some clothes appropriate for the 400 degree summer weather of Fresno.
There is a Holistic Institute near my parents’ house that has a very inexpensive student run massage clinic. I had a 50 minute deep tissue Swedish circulation massage…my walking looked improved after the massage. I’m hoping the massage will help me regain sensation on my “lucky” side.
April 25, 2009
My friend told me my future looks so bright, I need sunglasses 🙂 My parents and I are off to UCSF ICU to visit a lady from my support group who had AVM surgery yesterday.
I’ve just returned from UCSF, the lady I visited was very sleepy but doing extremely well after surgery. I was very fortunate to see some of the nurses who took care of me. Nurse Brenda was the first one to feed me orange jello, which got me started on my orange jello frenzy. We both laughed at some of my confabulations 🙂 It feels so wonderful to be able to walk into ICU and say thank you.
April 26, 2009
As I was stretching in bed this morning, I recalled another ICU experience. I was asked to count backwards from 100 to 1 by ones, I could not do it. That made me so mad! I demanded to speak to the Chancellor at UCSB to get a refund for college. How could he graduate someone with a Bachelor’s Degree who could not count backwards from 100. Then, I got even more mad that I could not sell my kidneys to pay off my student loans because the nurse had already harvested my kidneys to pay off her student loans 🙂 The brain is so fascinating 🙂 Thankfully, now I am able to count backwards from 100 by ones, fives and threes while walking! Another reminder that things do get better if you try 🙂
Exactly one week from today I will be walking at The Aneurysm and AVM Awareness Walk at Crissy Field in San Francisco. Last year I did the Walk using a cane. This year I’m walking caneless 🙂
April 27, 2009
I had a lot of spasticity, internal rotation and flexor synergies this morning. I attribute some of it to my rents being total tards. Don’t get me wrong, I love my parents, however, I’ll always be seven in their eyes. I guess with independence on the horizon, my tolerance threshold for being treated like I’m seven has gone way down 😉 Therapy this morning was great! I got to run in the Alter G with 30 second intervals between walking and running using a lightweight ankle brace and my Walk Aide. I got my heart rate up to 173 🙂 I’m alive! I pushed myself really hard and I feel wonderful! 🙂
My little piggy who went “wee, wee, wee all the way home” is purple. I must have walked into something and stubbed my little toe 😦 At least, it didn’t hurt…but, it looks like it must have hurt!
The video I wanted to upload and share of how my gait looked 6 and a half months post injury will require me upgrading from a free Word press account to a premium account. I want to keep my story free and very accessible to those in search of finding information from someone like me. I’ll keep you posted if I upgrade.
I hope your Monday is off to a great start! I’m off to the optometrist!
April 28, 2009
My visual acuity in my right eye can now be corrected to 20/30…unofficially 20/25 🙂 So from 20/40, I’ve improved some 🙂 My Mom and I are off to go pick out my new glasses. I really think my right ear sits a little lower now after the craniotomy surgery. And, since my VP shunt valve is located just a little above and behind the right ear, my choices for new glasses are a little limited because the piece of the glasses that sits on the ear can press against the valve and be uncomfortable.
April 29, 2009
Good Morning! Soon I’ll be headed off to see a bargain matinee movie with a friend, I’m excited to do something different rather than same, same 🙂 I found an awesome pair of glasses which will be ready in a week…I think I tried every pair on at the optometrist. You know, with only having 50% or less of my vision, you would think I could apply for half off discounts for movies or vision care 🙂 I guess it doesn’t really work that way 🙂 I hope you have an awesome day!
My friend and I saw the movie Sunshine Cleaners, had a chai, then decided to go see another movie…17 Again. I had a totally fun day! 🙂
April 30, 2009
Constraint therapy is restricting or constraining the unaffected side…essentially forcing the affected side to perform. Typically, this type of therapy is seen with upper extremities. Place an oven mitt or garden glove on the unaffected side so the “lucky” side can do all the work and get its identity back. Well, today, I’m expanding this constraint theory/therapy to vision. I still refuse to believe that my hemianopia is permanent. I had to relearn how to walk, I have to relearn how to see. I will be working with Dr. Greer and Dr. Chu at UC Berkeley’s Low Vision Clinic today to have custom contact lenses crafted that block out the seeing half of my eyes. My hope is once my seeing half is constrained, it will essentially force my non-seeing half to do something like see 🙂 I am told that nerves grow at 1mm per day. Let’s say that 6cm of my optic tract was obliterated beyond the optic chiasm…60 days? I think maybe in 90 days or so I can build a bridge and reconnect my vision 🙂 At least by then I can get an indication if I will get “aneu vision” I would still like to prove the doctors mistaken….I really can’t prove them wrong….but, mistaken…certainly! 🙂 This is fun, I’m my own science experiment 🙂
May 1, 2009
May Day…May Day…Happy First Day of May 🙂 Today I’m slated for an inexpensive student massage at the Holistic School. It’s raining so, I’ll skip my walk. Perhaps, I’ll get a eyebrow wax. I used to do my own, however, with my visual deficit, it’s very difficult for me to see the whole picture, and my results are as obvious as a clown nose 🙂 …so for the sake of normalcy, I’ll let someone else wax my brows.
May 2, 2009
This morning I had a lovely cup of coffee with our Aneu Sister, Eileen. She had written a comment on the Aneu Peeps page. Today is the seven year annie of her annie. We paid homage to her hemorrhage and she told me her story. I am reminded of how lucky we are and feel very fortunate to meet another miracle! 🙂 It’s storming cats and dogs in California. Despite the rain, I hope everyone has a blessed and thankful day! 🙂
May 3, 2009
This morning, I walked the Aneurysm and AVM Awareness Walk at Crissy Field in San Francisco with a very dedicated group of survivors and their families. There was a very heavy drizzle but, we walked. AND, this year, I walked without my cane. Yay!!!! 🙂
Amazing Nurse Lisa!!! 🙂 She was so instrumental in my acute care at UCSF. Thank you!!!!
May 4, 2009
I was really looking forward to my Civic Duty to serve on a jury…however, I’m not needed for jury duty 😦
Cinco de Mayo, 2009
Today, I tagged along with my Mom and her friend to the Legion of Honor to view the Lalique, Tiffany, and Faberge “Art of Luxury” exhibit. I felt like a slow wheel on a tricycle. The “take home” message from the exhibit is “It’s impossible to overdo luxury.” There were a lot of people I had to navigate through, which was very challenging. At one point, I had to sit down and decided people watching was a good alternative.
We attended a one hour lecture about the exhibit and, I’m wondering if I am really ready to go back to school. Keeping one hour of sustained attention was a bit challenging. Like I said earlier, “Leap and the net will appear.” School will be good. I’ll have to pace myself and take it easy my first semester while I test my limits and acclimate.
May 6, 2009
I picked up my new glasses…they look new and stylish 🙂 However, I have to get them refitted because they are a little tight and pushing against my shunt valve so, I’m developing a little bit of a headache.
In preparation for my aneu day for when I go away to school, I need to start paring down my possessions and deciding what inventory I want to keep. When I moved from the mountains back to my parents I went through a whole bunch of clothes that were too large and donated them with large piece furniture items. I donated all my high heels because I’m no longer able to operate them. I used to be a very gourmet chef and have more than a full kitchen and tableware for six…really, I need one bowl, one plate, one etc. Reviewing my belongings brings back memories of my old life and as I shed some of these it’s almost like having a clean slate to start all over. Really, do I need martini glasses and mixers, if I no longer drink? I do not want to hold onto things which will mold me into a certain lifestyle…that will evolve over time. All I know is that I have way too much stuff. I will keep items of sentimental value.
May 7, 2009
A recurrent theme at the Art of Luxury exhibit I attended were eggs and serpents. Eggs symbolize rebirth, and a serpent sheds its skin, also symbolizing rebirth. While going through my stuff yesterday, I found the clothes and shoes I was wearing the day of my aneurysm rupture. The clothes had been cut off of my body the day of, however, I found the clothes neatly stitched almost as if nothing had ever happened, cleaned, folded and pressed. Finding those clothes gave me pause and a time for reflection. In donating those clothes from the day of, I almost feel the symbolic rebirth as the egg or serpent.
I also uncovered that my Mom had gone through my things and organized them in her own special way. That was extremely frustrating for me since, now I have no idea where anything is. When I packed up my house from the mountains I grouped items logically to me and knew where everything was and asked for my parents help in keeping my boxes where they were first placed so I could recover something if I needed it. I’m not proud, but I cried and got a terrible headache. I have noticed that post injury my emotional response to very frustrating situations does not necessarily match how I would respond to a frustrating situation pre-injury. I seemed to have lost my stoicism, diplomacy, and my ability to keep my waterworks under control. Apart from these types of very infrequent emotional glitches, I remain very positive, happy, and future hopeful. Today is aneu day 🙂
May 8, 2009
My parents are attending a seminar for the next few days so I’m “Little Miss Independent” 🙂 I’m still organizing my belongings and am responsible for figuring out what to eat. Since I don’t get hungry, I have to watch the time to make sure I remember to eat. My meals aren’t glamorous, but very simple and nourishing. I’m still a little scared to chop vegetables due to my sensory and visual deficit….I don’t want any missing fingers at the end of the day 🙂 I think I will schedule in a walk since it is a very beautiful day.
May 9, 2009
My Mom’s friend, Marita, is taking me out to coffee in the early afternoon. Marita has visited me throughout all stages of my recovery. Not only would she bring great company 🙂 , but also gifts. It’s another glorious day so I will be sure and take another walk.
This morning while eating my oatmeal, I tried to use my “lucky” hand to operate the spoon…some malfunction happened and, the spoon flew out of my hand onto the floor. Then, I carried a full cup of tea in my unaffected hand, and my dishes in my lucky hand. I’m pleased to report I did not spill the tea, 🙂 however, I did drop my dishes. Once again, a subtle reminder of how much I used to take for granted. Holding my plate at a salad bar while I add more goodies, is definitely a challenge and sometimes, some goodies spontaneously fall off my plate. 🙂 Please enjoy the day!!! And, to all you Mamas out there, Happy Mother’s Day!
May 10, 2009
I took my Mom out to an early breakfast. We had a nice time. It’s another great day so I’ll go out for a walk shortly.
May 11, 2009
I had great therapy today. We targeted specific muscle groups in my lucky leg. Shortly, I’ll be “Little Miss Independent” again 🙂 My parents and neighbor are going away for a few days. I’m excited to have solitude and independence. I can’t wait to go to school!
May 12, 2009
My good friend is visiting from Oregon. We took advantage of the sunshine and walked around the Lafayette Reservoir. Then we spent the afternoon having coffee with her Mom and shopping at TJ Maxx. I took public transit. Overall, I had a wonderful day hanging out with my friend. Today is the first day since my injury I have felt independent and on my own schedule. 🙂 I’m looking forward to more days like these 🙂 We’ll see what I can cook up for tomorrow’s independence 🙂
May 13, 2009
I slept extra terrible last night 😦 I think I overdid it yesterday. For my independence activity today, I think I will walk to the coffee shop and maybe take the bus back (or, vice versa).
I have a restless feeling in my gut sensing change is on the horizon. At one point last night I had a very weird headache, like one I’ve never had before. At another point I thought if I went to sleep I would not wake up…very strange but, not scary…and, the first time I had ever thought of a thought like that….hmm…are the planets in retrograde or something? 🙂 I guess from my lack of sleep last night, I’ll sleep extra good tonight…knock on wood 🙂
Well, I did walk to the coffee shop and back. While drinking my coffee, I people watched. I was so amused…a lot of people had issues today with the “push” “pull” concept of how to operate the door 🙂 That really reminds me that we are all human 🙂
How often pre-injury would I walk into a room with purpose and forget what I needed? I also have experienced the push/pull? door situation pre-injury 🙂 I really think everyone, not just survivors, could benefit from therapy….think about it.
May 14, 2009
🙂 I slept better than normal…I still woke up more than a few times. As added insurance, before falling asleep last night I took a warm bath, rubbed on lavender scented lotion, and took a homeopathic sleep aid.
I noticed my toes on my lucky side are starting to get perma-curl again 😦 I’m due for some more Botox in June or July but, have to wait for another insurance authorization.
My rents return this evening. It’s my last day of independence. I might walk again to the coffee shop or, explore something new hmmm….wide open possibilities 🙂
May 15, 2009
Yesterday, I took the bus to the coffee shop and then decided to walk to my secret Lotto spot, which turned out to be much further away than I thought. It took me two buses and two hours to get back close to home! Then my rents returned and my Mom has the plague so I’m trying to avoid her germies at all cost because my condition makes me more susceptible to getting sick.
Today, I’m getting a “Muscle Activation Technique” (MAT)evaluation and, I just realized I’m a year and nine months post injury. I’ve come a long way! 🙂
I just returned from my MAT eval and had instantaneous results. Yes! Dr. Paul Ciske and I worked on external rotation and muscle activation in my lucky leg. He gave me 11 exercises to work on to make sure the muscles he activated hold. I walked around for a little bit and felt like normal 🙂 I hope these results stay, I feel great!
May 16, 2009
When I woke up this morning, I had a lot of spasticity so my gait didn’t really feel normal. However, I then did my 11 new exercises to maintain the muscles that were reactivated yesterday, strapped on the Walk Aide using very minimal voltage, and I pleased to report that my gait looks and feels a little normal 🙂 I have to praise my brain when the type and quality of movement I wish to have appears and feels good. Keep it coming 🙂
I appreciate everything way to much to ever take anything for granted again. However, it would be nice if my walking became like my belly button…I know I have a belly button but, it does not require much thought or effort to know it’s there. 🙂
I will gladly give back my handicap parking placard when my walking becomes more automatic and normal. Speaking of that, having a parking placard is like having a pick up truck. When someone moves, they always want to borrow your truck. Now, with the parking placard. “Hey, do you want to ride with me to go _____? ” .
We’re having some gorgeous weather today. Have a wonderful day!
May 17, 2009
It’s a scorcher out there so I feel like I’m melting. This morning, I went to the gym. I’m trying to figure out how to make my font size and style consistent on this weblog so it’s more visually appealing. Tomorrow, I’ll be off to therapy early and then the dentist in the afternoon. Take Care! Stay cool and drink lots of water…it’s good for brain function! 🙂
May 18, 2009
I dropped my transit ticket and, when I bent down to pick it up I found a lucky penny 🙂 I had a wonderful, yet, busy day…I’m exhausted. I got to see a very good friend of mine who had seen me off on the train platform the day I left on my train adventure. What an treat! 🙂 Therapy was grueling and very productive, my dentist gave me a thumbs up and no cavities! 🙂 Yesterday afternoon I also had an unexpected treat of another friend who stopped by who had not seen me since I walked with a cane. Tomorrow I have another friend stopping by to take me to coffee.
I feel like a social butterfly! 🙂 Brain injury really put a damper on my social life so, having my good friends all pay me special attention in the same week, makes me feel very lucky! My friend Alycyn in Atlanta gave birth to a healthy baby boy…she’s a Mama!
I’m going to hit the hay. Good night, sleep tight!
May 19, 2009
I had a lovely long lunch with two of my friends. As soon as my friend heard our other friend was in town, she was able to join us 🙂 I had a nice day!
I had been accepted to the Rehabilitation Counseling Master’s Program, a conditional offer, only if accepted to the University. I called the University to find out WHEN I would receive the letter of admission. Apparently, that letter was sent out at the beginning of this month but,I never received it. Yay! I’ve been accepted to Fresno State University! 🙂 They are sending out another letter to me. Once I have the admission letter in my hot little hand, I need to share it with my rehabilitation counselor, sign up for classes, and accept financial aid.
May 20, 2009
I’m doing lots of follow-up this morning, with the University, the ADA, my case manager from Blue Cross, etc.. Later this afternoon, I will have another “Muscle Activation Technique” (MAT) evaluation with Dr. Paul Ciske to retest the muscles he activated in my leg and activate some muscles in my shoulder and arm. I have been struggling with fine tuning my motor deficits on my left extremities so these treatments have been helping. Plus I will have a tool box of excercises. Remember, there is “spontaneous recovery” but, most everything I have regained has been from very hard work and dedication. Have a truly wonderful day! 🙂
May 21, 2009
I had great results from my MAT treatment from yesterday. For the first time, my shoulder feels like it is actually attached to me and supporting my arm 🙂 Yay! I was given three new exercises to maintain the muscles activated in my shoulder. Dr. Ciske also revised my leg exercises.
Today, I get my final contact lens fitting before the lenses are sent to be custom tinted…One step closer to trying out my science experiment 🙂
Today, I will also try to register for classes 🙂
Oh my goodness 😦 I’m feeling discouraged. I started to try to register for classes and accept/decline student loans…The last prerequisite I need to be fully Classified is full and there is a hefty wait list. For some reason, I’m not able to access my financial aid info. I will try again after my eye appointment and then inform the department chair of my current issues and possible solutions.
I’m also trying to lay the groundwork so I can continue with my physical therapy while in school. Since my therapy needs are very high level and specialized, I’ve been interviewing facilities and therapists near Fresno State. I finally spoke with one therapist that I feel understands my special needs.
May 22, 2009
I was looking in the mirror this morning and realized my facial hair is lighter and grows slower than the right. I guess some mild facial paralysis is good for something 🙂
My final contact lens fitting went very well. I completed more visual field testing so UC Berkeley can have a very solid baseline. The contact lenses fit and do not rotate very much, so now, the contacts will be sent to a company that will custom tint the right half of each. With hope, I will receive the contacts by June 8th and then can begin constraint therapy vision training. 🙂 UC Berkeley hypothesizes that I will see movement before I perceive objects….I’ll take anything I can get 🙂 Within one month of intensive visual training, I will have my visual fields retested to see if there is any improvement. My hope is that with this constraint therapy idea we can cure hemianopia 🙂 I wonder if they would name the therapy after me? 🙂
This afternoon I’ll be off to a massage for sensory re-education. Then I will delve into my Fresno State registration issues. Enjoy the beautiful weather!
May 23, 2009
Today’s my big sister’s birthday. I wish we lived closer. She has always said I’ll come back 100%…she says she knows it….and I believe her. My massage was wonderful and relaxing. In my head when she was massaging my left side I had the song “wake up little suszie” plaing in my head 🙂 It’ll be a very low key weekend but, will continue to organize my stuff.
May 24, 2009
🙂 Finally! I felt like I slept last night…still no dreams and, I woke up a couple of times but, I feel like I slept! I feel amazing. A few months ago I shared with my doctor my sleeping difficulties….I would wake up at 2 or 3am and just hangout until I would get up at 9am. I told him I did not want a prescription for any medication. He suggested a homeopathic remedy called melatonin. My Mom finally picked it up yesterday. I took 1 mg and slept 🙂 Since sleep is so important for the healing brain, I wonder if my improvements will continue more rapidly now that my brain can remap my hard work while I sleep 🙂
Melatonin should help me regulate my circadian rhythm and get me back on track with sleeping 🙂 I read up on melatonin and, I should not take it every night…however over the next two nights I will take it and then skip a night or two.
My shoulder is very sore. I worked out at the gym yesterday for the first time since Dr. Paul activated the muscles in my shoulder. Apparently, my shoulder muscles are now being recruited…Yay! but, Ouch! 🙂 I guess the rowing machine, incline push ups and weights take on a whole new meaning now….really if you think about it, I have not used those muscles in a year and nine months. I’m afraid to know really how sore my shoulder is because I think the sensory deficit may be masking the pain.
I slept fairly well…not as well as the night before but, better than normal yay melatonin! 🙂
May 26, 2009
My shoulder feels much better and have continued with the new muscle activation exercises and, I slept fairly decent last night…tonight…no melatonin…we’ll see how I sleep 🙂 Today I will go to the gym, finish my final preparation for the third year medical student lecture on Thursday 🙂 I think I will also email the White House or the First Lady. Everyone makes fun of the Veep with his topic maintenance/appropriate statement issues…I think he might need a little bit more highly specialized speech therapy. I admire the Veep and all his political accomplishments since his ruptured aneurysm….but, wish people would stop making fun of him.
May 27, 2009
I had such a lovely day. A friend of mine took me to a tea house I had been wanting to try. Even without the melatonin last night, I slept fairly decent…not perfect but, decent.
I was given fifteen more minutes for my medical student presentation tomorrow. I definitely have enough material, I just need to organize and expand. There will be 140 students and I need to arrive at UCSF by 7:45am. I am super excited about sharing my story with the future doctors of America 🙂
Yippee! With the help of the Rehabilitation Counseling Department, I was able to enroll in that final prerequisite class I needed 🙂 It’s official, I will be a student come August! 🙂
May 28, 2009
I felt my presentation to the first year medical students was very successful and I made a positive impression 🙂 I hoped that one day they could tell their patients that back in medical school they met the gal who cured hemianopia. 🙂 My two parting requests of the Future Doctors of America were:
1) Discard the mentality that the only recovery you can regain post-stroke is within the first 6 months to a year post injury. I am 1 year and 9 months post and still see positive improvement…albeit not as rapid as in the first year but, I still see tangible improvements.
2) If they decide to become an ER doc, that they refer out severe cases, like mine, to a University/Teaching Hospital as quickly as possible because there is a chance the patient will survive and make a remarkable recovery. The outcome of the patient is typically better if the hospital handles the diagnosis on a frequent basis…
Of course, I wished I had a few more minutes to present and more time to answer their questions, because this type of stuff you can’t learn from a textbook.
As I was leaving, I decided to stop by Neuro-ICU to say thank you. Since I usually visit ICU with my parents, the staff remembers me because of them. I look so different now compared to when they were taking care of me. Thankfully Nurse Lisa, Nurse Nancy, and Nurse Tim were there. It’s always nice to say hello and thank you.
I was able to visit with a patient who was just as bad off as I was. I spoke with her for a few minutes and offered positive encouragement that if she works hard in therapy she can regain a lot. I shared with her some of my accomplishments. I will pray for her and keep her in my thoughts…she has a long hard road ahead of her and I hope she will make the best recovery possible.
My thirty day train adventure has been posted on Amtrak’s Whistle Stop Rider Memories.
It’s beautiful outside, I will go for a walk and reflect on what a tremendous day I’ve had 🙂
May 29, 2009
Compared to yesterday, I’m having a very low key day. I will have a sensory reeducation massage, do my home exercises and, I’m sure I can cook something else up if I feel up to it 🙂
May 30, 2009
Ouchie …I have pain behind my right eye, an achy headache and, mild nausea. I’ll take it easy until I feel better. I was supposed to go to a dress rehearsal of Tosca at the SF Opera…thankfully, someone else can go in my place.
May 31, 2009
This morning, I’m feeling better enough to walk up to the coffee shop with my Dad. I need to move my muscles and get blood pumping because I feel very stagnated after taking it easy yesterday. I will also begin working on my science experiment parameters/protocol, so I could perhaps get published as a case study when I cure my hemianopia 🙂
After my presentation to the medical students, I was able to stay for the rest of class and listen to Dr. Abrams and Dr. Byl lecture on Neuro Rehab. A review of the Constraint Induced Therapy (CIT) study of upper extremities was reviewed. Following the format of the CIT study….it looks like I will be wearing my constraint induced vision contacts for four hours a day…hmmmm….I really liked my first day in medical school 🙂
At coffee, I hugged an Oakland Police Motorcycle Officer. I think the only reason why he let me hug him was because I was wearing my “I’m Quite Charming” t-shirt. I hope I helped brighten his day 🙂
We took my 87 year old godfather out to Chinese dinner for his birthday, my fortune was “Do not rush through life. Pause and enjoy it.”
June 1, 2009
I’m giving my gym 30 days notice today. Then my parents and I will have a picnic and bring my new clothes to be altered by their seamstress. All the clothes I bought when I was released from the hospital are too large now….
I feel very special…my friend Monica sent me a “back to school” care package from Denmark, with a rubix cube, pens and a notebook 🙂 Now, I’m ready for school!
June 2, 2009
This afternoon, I’m headed to another muscle activation treatment 🙂
June 3, 2009
I’m not sure if it is an urban legend but, back in the day, the highway patrol used to have a “HUA” box to check for cause of accident. HUA…”head up” I’m sure you can figure out what the a stands for. My commute this morning to therapy on BART had a number of “hua” people….completely unaware, people texting or doing homework seated in the disabled seats and, the trains were overly crowded. Therapy was wonderful!
I looked into changing my cell phone number to (510)ANE-UGAL….someone already has that number in my area code but, it was worth looking into! 🙂
June 4, 2009
I’m super excited! My neurosurgeon will be speaking at my aneurysm support group meeting tonight 🙂
My support group meeting was so uplifting…you could feel the pulse and vibrant energy of us survivors and miracles. I think we could have produced enough energy to light up San Francisco 🙂
Mari, our Aneu Sister, gave me a t-shirt “4 out of 5 doctors prefer me” 🙂
Before leaving UCSF, my rents and I stopped by to see my nurses. A PHI Air medical helicopter crew was dropping off a new patient. I told them, their Med 4-2 base flew me, gave them my card and said thank you. I got to hug and say thank you to Nurse Amy and Nurse Jewel. Not often do neuro nurses get to see positive outcomes. I hope I helped brighten their day 🙂
June 5, 2009
My Mom and I are getting ready to meet my aneu sister, Ann, with their mutual friend for a nice relaxed ladies lunch 🙂 I am very much looking forward to this outing. I hope everyone has a marvelous day! 🙂
June 6, 2009
I broke a fingernail on my “lucky” side…with sensory deficit and my visual/spatial still being a little off…let’s just say…maybe I shouldn’t be using nail clippers…at least nails and skin grow back 🙂
June 7, 2009
I feel completely inspired! I’m working on a secret project with my fellow survivors….since it’s secret, I cannot tell you, yet….but, let me tell you….it’s worth the wait 🙂
June 8, 2009
I successfully washed the outer casing of the “calf cuff” of my Walk Aide device because it was starting to get stinky. AND, I put it back together and it works and smells and looks clean 🙂
I’m headed to walk the Lafayette Reservoir with my rents and then have a coffee or chai. Enjoy your Monday!
My custom contact lenses did not arrive, yet….they hope to be in by next week 🙂
June 9, 2009
This morning I woke up with swelling around my eye socket/craniectomy site…but, thankfully the swelling has gone down since. This evening, I’ll be having an early dinner with my history study partner from when I was in community college 🙂 I also plan to go for a walk.
My friend’s father passed away from a heart attack. I shared my moments prior to my near death experience and shared a fellow survivor’s story of being revived after being clinically dead for six minutes from a massive heart attack. He and I shared similar memories about near death/death that I hope I provided her some comfort in a very difficult time in her life.
On a lighter note, please remember to love your parents and tell people how you feel that mean a lot to you…change happens quickly but, if you tell people you love them and surround yourself with meaningful people it can only enrich your lives and memories 🙂
June 10, 2009
I’ve been perplexed about my morning routine. When I wash my face, my left house slipper and left elbow gets wet and there is a little puddle on the floor? ….hmmm…I’ll put that on my post it note as an issue to address at my next therapy 🙂
June 11, 2009
I was trying to refill my prescriptions and the pharmacy called and said I was no longer covered by my insurance. Argh! This month I transitioned to the 11 month disability extension of benefits after paying COBRA for 18 months. Tomorrow before therapy, I will have to try to straighten this out….so very frustrating, especially since I pay sooooo much for COBRA.
June 12, 2009
I have not resolved my health insurance kerfuffle, yet. I have waited a long time for my doctor’s appointment today so, I will go to the appointment and trust that the administrative health insurance issue will resolve before I need to fork over moolah… I’m not worried, just frustrated.
I just returned from an absolutely wonderful doctor appointment with Dr. Daniels at UCSF, my new primary doctor. I have some follow-up referrals/lab work I need to take care of before school starts. What I found truly amazing was Dr. Daniels read my medical record/encyclopedia prior to my appointment. He probably knows more about me than I do 🙂
Oh, and I grew 1/4 of an inch 🙂 I’m officially 5’7″ now. I had been 5’6 ” & 3/4″….quite puzzling….I did not know you could grow as you get older…I always thought the opposite was true. Hmmm….but, I’m 5’7″ 🙂
June 13, 2009
I woke up at 2:30am last night and, have been up ever since…..it is now almost ten. I am all foggy headed and exhausted. When I can’t sleep like that, nothing is worrying me, I have empty thoughts , stare at the ceiling and maybe listen to music. Another thing I have noticed post injury is that I rarely hear chatter (my inside voice, commenting on “oh my goodness, what was that person thinking when they picked out that outfit?” 🙂 and, other inner thoughts of worry, what I need to do for the day….I guess the silence is nice, however, I’m not sure which is “normal”? )
June 15, 2009
I am a year and ten months post injury today! 🙂 I was supposed to get my new custom contact lenses for my vision experiment, however, they have not arrived….so I hope they will come by next Monday. This morning I tried using my left hand to straighten my hair…very tough, but I could see improving if I continue to practice 🙂
I am “Little Miss Independent!” My rents went away for a couple of days 🙂 I will walk to the coffee shop and people watch 🙂 Yesterday I had coffee with someone from my gym. I have developed a little entourage of people curious about me at the gym. My noticeable deficits and dedication spark curiosity and conversation. I can almost hear their thoughts of “what’s wrong with you?…why do you keep dropping the weights?” post-injury, I guess I am more inviting of conversation, whereas before, I would be suspicious, be cordial, and then quickly disappear in another area of the gym. My personal trainer warns me of “the ones” to run away from. I miss the social interaction with customers and coworkers so, it is nice to talk with people.
Beside my coffee shop walk outing, I’ll pretty much be a “home-body” today.
It looks like my insurance limbo is an administrative error that will take about a week to clear up…I will move forward with bloodwork, xrays and setting up a couple doctor’s appointments. I always feel better when everything is 100% resolved because I really do not want to rack up a whole bunch of debt without knowing for sure. Trust!
June 16, 2009
I am in for a treat! my friend and I are headed to see the movie, Up, this afternoon 🙂
June 17, 2009 1:40am
I am very sleepless 😦 In a few hours I will get up and go to therapy. Up was a fantastic movie! I had a nice time hanging out with my friend and seeing her photos from her trip to France.
It was my turn to cross the street. I made it three quarters of the way and a driver who obviously saw me, turned his car into my path and I stumbled from the shock of the situation….how rude! Where’s a cop when you need one?
I guess I will try counting sheep backwards from 100 by threes 🙂 I certainly hope you slept well!
After breakfast, I tripped over a box on the floor…as I fell my Dad grabbed my lucky arm so now my shoulder is a little sore. That was the number 1 rule my rents were told before I was released from the hospital….let her fall or push her up into the stairs DO NOT try to catch her, especially by grabbing her affected side.
Secondly, I fell onto people at BART while walking to an available seat, when the BART train took off since the disabled seats were filled. Thankfully, a group of nice people helped me up and helped me lick my wounds. The non-disabled people with a conscience vacated their seats…whereas the non-disabled/HUA people focused more intently on their crossword, texting, etc. as if pretending they were invisible. Sigh.
Oh, AND my ex left a voice mail message. At the time my aneurysm ruptured I was engaged….
Therapy was wonderful. I decided my trying day could not continue so I purchased a $1 Optimism Lotto Ticket…. 🙂 Now that I have lunched, I think I might go for a walk…
June 18, 2009
My lower back and shoulder are a little hurtie after my falls yesterday. I have also developed some bruises. Today, I had Japanese lunch, a coffee and a walk at the reservoir. It has been a good day 🙂
Tomorrow I need to have bloodwork and an xray done at UCSF.
June 19, 2009
UCSF this morning was busy and productive but, I got all the lab work and testing done 🙂
I just got off the phone with my cell phone provider. I explained that I wanted to change my phone number to —ANEU-GAL and why. She checked all available area codes within California and their entire system. Not in the cards today….we got close a few times. What would be neat is to one day be able to pay for an 800-ANEU-GAL phoneline so survivors and their support networks could phone me for inspiration/hope at no charge 🙂 I can only dream!
June 20, 2009
Today is my Dad’s birthday. We went out to breakfast. We returned to one of our cars had been stolen. Actually, it was my car that I had gifted to my Dad when I could no longer drive that had been stolen. Ironically, the last five digits of my VIN (Vehicle Id Number) were 10851, which is the Ca Vehicle Code for “stolen vehicle”. My car was destined to be stolen!
When I had registered my vehicle when I first purchased it, I thought the 10851 was not a very good sign because of my knowledge of 10851 CVC….from my internship as a Police Aide when I was in College….turns out my gut was right! See, trust your gut!
I gouged out a chunk of flesh from my lucky leg when it got caught on a door 😦
I hope the rest of this day is uneventful! At least dinner is slated to be nice 🙂
June 21, 2009
Happy Father’s Day! I took my Dad out for an early breakfast. Then I walked around to all our neighbors to let them know about the vehicle theft from our very private street. I then downloaded “Las Mananitas”, a mariachi song our family typically plays on our birthdays since my rents lp somehow got nibbled on by a squirrel when they remodeled the house last year! Tomorrow I get my custom contacts 🙂
June 22, 2009
My contacts came in and I tried them on 🙂 …..unfortunately, the tint was not opaque enough so I could see through the part I was not supposed to see through 😦 It was like having on dark sunglasses over my eyeballs. The contacts will be sent back to be re-tinted solid so no light can come through. We have hopes that maybe by next week, I could get them 🙂 I would wear the contacts for four hours a day and do vision training/therapy.
I had a bit of an exciting puzzlement. with the contacts…..In checking to see if the contacts would stay stable in my eye and, if enough of the lens would be occluded…I noticed “light” out of the top of my right eye…. Perhaps could this mean that my hemianopia in my right eye is attentional, rather than physical? ….what an exciting prospect! The left eye had no “light” shine through anywhere. I am very excited about this experiment 🙂 Maybe I will drive again…or, at least stop bumping into things 🙂
June 23, 2009
It is warm today and I feel all melty. My original plan was to go to the gym and for a walk….we’ll see.
I spoke with my rehabilitation counselor. I made contact with my benefits administrator but, my insurance woes have not resolved, yet…..
My parents and I started a dietary “cleanse”…no meat/dairy/coffee…lots of veggie protein, veggies and fruit. I wonder if my meltiness could partially be diet related? At least the cleanse is only two weeks.
June 24, 2009
Therapy was wonderful this morning! On the BART ride over, a lady noticed I needed a seat and had people vacate the disabled seats for me and assisted me over to the seat…no falling this morning 🙂 As of Midnight tonight I will be reinstated on my health insurance retroactive from June 1st 🙂 I am very thankful and, look forward to the confirming phone call tomorrow that this in fact happened 🙂 What a relief! I was able to schedule some consults 🙂 Yay!
Tomorrow, my parents are taking me to Fresno State to check out the campus, dorms, and for a scholarship interview I have on Friday. I am very excited to really see what I “signed up for” and for my next stage in my aneu life 🙂
June 25, 2009
Do not count your chickens before they hatch! My health insurance woes continue. I will not be reinstated for another five business days….so technically 7-9 days including weekends. But, once I am officially reinstated, it will be retroactive since June 1.
I will not be able to pick up my anti-seizure or anti-spasticity medication until I am officially back on my health insurance plan. My track record with the Anthem Blue Cross reimbursement process for approved expenses has been absolutely terrible. I figure I pay sooo much already for COBRA I am not willing to pay any additional for something that should be covered.
The new extremely frustrating issue is I am also looking at a “administrative” premium rate increase for the disability extension of benefits. 😦 😦 😦 With Cobra I pay 102% of the premium that my employer would have paid. Now I am looking at 110%….
…..”kick me while I’m down already, why don’t ya?” 😦 😦 😦 😦
Because I’m so poopy faced and sad about my insurance issues it has put a huge damper on my excitement for my Fresno trip. Plus, you would think my rents are planning for a two week trip….not a 24 hour one. Really, Mom, how many pairs of shoes do you need in 24 hours?
I am excited that I will get to wear a suit for the interview tomorrow. I have not worn business like clothes for two years.
June 26, 2009
I just returned home from Fresno to a phone message that my Botox injections for my lower leg internal rotation and toe curl has been canceled due to my insurance “terming as of June 1st” Argh! Until I am officially back on the insurance I cannot reschedule…. 😦
On the positive side my trip to Fresno was great! 🙂 🙂 🙂
My scholarship interview this morning was wonderful! I have to say, I killed it! 🙂 I felt prepared and confident, even though I did have some minor word-finding issues. I hope I find out soon if I was selected as a recipient 🙂 I met the Dept Chair of the Rehabilitation Counseling Program and that confirmed that this is the right path….see, follow your gut and it works out!
I got to tour the campus and the dorms. I feel very excited about my next step! 🙂
June 26, 2009 9:18pm Hot Off the Press!!!!
I have been awarded as a recipient of the scholarship!!! 🙂 Yipee! I am ecstatic!
June 27, 2009
I had a huge day! I went kayaking with my rents on the Quarry Lake in Fremont with a 50+ group. I had tons of fun!
I had to stroke the paddle three times on the left to equal one stroke with my right arm. Without feeling my left side, working the rudder was tough. I got suntan lotion in my eyes. My low back is fatigued. I scraped my ankle on rocks getting in the kayak. I did not fall in the water….although with the heat wave I would have welcomed a dunk in the water 🙂 Overall, it was an extremely fun and challenging day…I am a bit over tired. My left hand had trouble holding on to the paddle.
June 28, 2009
I feel like melted butter and honey oozing into the nooks and crannies of a lightly toasted English Muffin. 🙂 I am exhausted after my Fresno and kayak trip…I am actually having a hard time keeping my eyes open. My right arm is not sore but, my low back feels a bit fatigued. My left ankle is pretty swollen but, doesn’t hurt…if it is still swollen or turns purple in a week, I’ll get it checked out.
The California Highway Patrol found our stolen vehicle…my rents will pick it up later today. According to the tow yard, the car seems to be recovered in a drivable condition.
While I was in college at UC Santa Barbara I was a flat bed tow truck driver 🙂 …it was a very fun job and I was a great “roadside assistance provider”…besides helping people, my favorite calls would be accident vehicle recovery…now you know something new about me 🙂
I think everyone is experiencing a heat wave….drink lots of water and, enjoy the day!
6-28-09 Stolen Vehicle Recovery Outing:
Sadly, the vehicle was semi-stripped….but, still in working condition…since the car used to be mine, seeing it semi-stripped was sad and violating! 😦 Most notably, the cd player, speakers, over sized off road tires, one license plate, spare tire, manual locking 4WD hubs, towing package, and the seal around the windshield were taken.
I had a nice conversation with Chuck, the General Manager, at the tow yard. He offered me a manager job 🙂 He said, since I cannot drive, I could certainly train other drivers. He said I should share my story with Tow Times Magazine 🙂
June 29, 2009
I said goodbye to Dixie, my former nissan pathfinder. She and I had some great adventures.
I have spent the last six hours trying to deal with getting my health insurance reinstated….many tears of frustration were shed AND, I still have to deal with it tomorrow AND I am looking at a 150% premium increase! Argh! 😦 😦 😦 I hope by my update tomorrow I will have an outcome to share and, hopefully it is positive 😐 I will take my swollen puffy eyes and very achy head to bed. Good Night!
June 30, 2009
After three more frustrating hours on the phone…I am back on the health insurance, with the exception that pharmacy will take 24 more hours to update my eligibility. I should be happier with the result than I am. This has been a very terrible process….my neurological deficits have worsened with all this increased and very unnecessary stress. My eyes are still tear stained, puffy and swollen, and I have a terrible headache.
I promise you that after I feel a little better I will follow up on any available recourse I can to try to prevent this situation from happening to anyone else in the future.
Since my premium has increased to an outrageuos 150% I will need to budget each penny until I am able to get on Medicare in February 2010. Life as disabled is difficult enough…I do not need added difficulty because stress manifests itself as a neurological decline. I feel my gait and functioning has gone 10 steps backwards 😦
I am feeling very defeated and sad.
July 1, 2009
My day started off reasonably well. My medication is ready to be picked up 🙂
However, my big shopping day at Walmart for essentials for college proved very challenging.
Really, I need a personal bodyguard….anyone want to apply? 🙂 I was scanning the shelves for what I needed and this big man body slams me from my left, says “excuse me” sarcastically, and then starts complaining about me in the isle looking at the shelf. I yelled at him, and hoped my mother would stand up and be a mama bear. In retrospect, I wished I could have body slammed him back!
My mom was very insensitive to my deficits and took away ownership of my shopping trip….I know she’s my Mom but, how many times do I need to explain my deficits and the best way to accommodate for them and assert my strive for independence if she wants to do everything for me? I think I overreacted a little bit since this rests on the heels of my insurance saga. Post-injury, my emotions do not necessarily match the situation as it would have in the past. I had poise, diplomacy, and was stoic before….
I am certainly ready for this “pick on the crippie” week to be over! 🙂 Tomorrow has to be better! 🙂
July 2, 2009
UC Berkeley called this morning. My custom contacts for my experiment did not arrive…
Today is a beautiful day! I think I will go for a nice walk and tonight I have an aneurysm support group meeting. All is good on the aneu front 🙂
I was just thinking, maybe I cannot wear high heels….everything else might take some time to achieve but, anything is possible if you believe and work at it. I still have increased spasticity from my stressful week impacting my movement, and a headache….but, thankfully my spirits have lifted 🙂 🙂 🙂
My UCSF Aneurysm and avm support group meeting was awesome! My Doctor, Dr. Abrams, was the invited speaker, and the focus was on neuro rehabilitation.
July 3, 2009
I had a nice green tea matcha latte made with oatmilk….yummy. I’ve been organizing and thinking that in six weeks I’ll be off to school 🙂 I had a great walk even though I had some knee pain on my unaffected side. My Walk Aide calf cuff got stinky again so I’m washing it. That has been my day in a nutshell 🙂
July 4, 2009
God Bless the U.S.A.! I will enjoy looking through my photos from my cross the country train trip and see if a self propelled two wheel scooter with a handle bar and hand brake might be something useful to get around the 3 mile Fresno State Campus.
Have a safe and happy 4th!
July 5, 2009
My friend is in town visiting from Oregon so, we are going to hang out today 🙂
July 7, 2009
My internet is back up:-)
I have been a very busy gal this morning. I have phoned the ADA, the State Insurance Commisioner, and the Department of Labor. I find that since my health insurance premium is increased by 40% because I was determined disabled by Social Security within the first sixty days of being on COBRA total discrimination! My health insurance premium is $1,100 per month now….outrageous!
This COBRA/Cal COBRA/11 month disability extension of benefits is very confusing AND I find that no one I have spoken with is a true expert….including the company that administrates COBRA on behalf of my employer….I was completely misinformed and misguided. I will take this bundle of frustrating energy and change the system so in future, you might not have the same experience….
My low back is a little achy sore since I went swimming with my friend 😐
A friend of mine got me a gift certificate for a mani/pedi eyebrow wax at my favorite nail salon. It was very nice to be pampered 🙂
July 8, 2009
This afternoon I will be catching up with someone who I have not seen for eleven years! The last time we saw each other was when we graduated from community college. 🙂 Wow!
Where has the time gone?
July 9, 2009
I have a my post-it note with issues and concerns all ready for my appointment with Dr. Abrams today.
July 10, 2009
I approached my Congresswoman and Senator to help with the humungus issue I am having with my insurance. They have been very responsive and receptive. I tried ollowing up with Blue Cross and my COBRA administrators regarding where they are in the process in what they had promised me….nowhere, since last week! Argh!
At the request of my doctor, I have started a headache journal since my headaches have been more intense and more frequent. depending on the pattern, more imaging studies might be ordered.
I did have a very nice student massage. I am almost done with the special massage package I bought at the end of last year 😦 I guess what saddens me is that since my cobra is SO expensive now, I cannot purchase services that are beneficial but, not necessarily covered by insurance….like a therapeutic massage, or the level of physical therapy I was receiving, or the muscle activation technique…. I’m trying everything I can to get better and now I feel limited.
July 11, 2009
I was prescribed sleeping medication, and last night I slept! 🙂 Not only did I sleep but, I dreamt! 🙂 🙂 🙂 My first dream in a very, very, very long time. 🙂
It was so nice to sleep and dream….I feel incredible!
July 12, 2009
Last night I only slept okay….no dreams 😦 I was really hoping for a continuation from the dream from the night before 😉
I had my first coffee in three or four weeks and then headed to the gym with my friend. It felt incredible to workout again. My friend then cooked me a nice healthy lunch. I’m worn out….perhaps a nap?
July 13, 2009
I am soooo thankful! I have to furnish the Fresno State Student Health Center proof that I have been immunized for measles, mumps, and rubella. My Mom’s filing/organization system from 1979 worked and she found the proof I needed…no needles for this gal 🙂
With keeping a headache journal, I have noticed my headaches are more chronic than I thought 😐 We’ll see what the trend might reveal to my doctor…
July 14, 2009
I woke up knowing I had dreamt, however, I could not remember what my dream was….plus, I only slept alright…. 😦 After pondering for a while….my dream came to me 🙂 I was involved in a water balloon fight 🙂 If you think about it, it is pretty symbolic of an aneurysm rupture….wow, my subconscious is deep 🙂
I then had a Walk Aide adjustment so I am all ready for school. I tried the heel sensor vs. the tilt sensor. Currently, the tilt sensor is more accurate for not missing a stimulus. I learned that placing water on the electrodes rather than my skin is more effective for conducting the electricity. Although a hidden feature of an auditory beep at the time of stimulus is malfunctioning on my unit, it seems like a good way to reinforce and reprogram my brain to know when to dorsiflex. We are checking to see how to get this feature working properly. Also, I learned of the “exercise mode” that for a whole minute, the device will fire my peroneal muscles into dorsiflexion for 2 seconds and then a 1 second break…during this time, I am supposed to activate my own muscles, too.
My orthotist noticed my increased spasticity was impacting my gait 😦 I’m supposed to keep on getting better, not go backwards. Soon, I will get Botox and have increased my anti-spasticity meds so I’ll be humming right along soon 🙂
My Mom and I went to Bed Bath and Beyond for some back to school essentials like a desk lamp. The store was very crowded and uncomfortable for me to navigate. And, two people walked into me with their carts 😦
Then we went to the produce store and I got involved in two more hit and run shopping cart incidents where I was the victim 😦 Am I invisible? 😦 And, not even an “I’m sorry” from the culprits 😦
I will do my best to avoid crowded areas…. and, if necessary, hire a bodyguard or take a defensive shopping cart course 🙂
July 15, 2009
I am 1 year 11 months post injury today 🙂 In one month and three days I move to Fresno State and begin my aneu adventure 🙂
Getting dressed this morning I had an incident…..I was trying to put on my shorts and my lucky leg got caught and I fell 😦 Going back to the basics of relearning ADL’s (activities of daily living) I realized my error….I should have placed my lucky leg in the hole first….at least I know how I can most likely avoid avoid hitting the floor and, almost hitting my head in future 🙂
My other mild “mishap”….I had tilted my head forward to ponder the daily jumble word game from the newspaper and, out of no where drool dripped on my shirt 😦
And, my lucky arm seems a bit floppy today 😦 I have to work extra hard on reintegrating my arm since I had to discontinue my specialized therapy because of my premium increase…. The onus to maintain and improve is now on me, unless I return to hospital based outpatient therapy.
July 16, 2009
I’m off to a scary doctor’s appointment today….wish me luck 😐
My very short dream last night….I went to a baseball game and got hit in the head by a foul ball that got stuck in my head where my bone flap was. At least I’m dreaming 🙂 So, I’m thankful.
July 17, 2009
Only napping last night….no sleeping or dreams. Apart from being very tired, I am very excited that I will be Little Miss Independent for a few days while my rents are R&R ‘ing out of town….Yay! 🙂
July 18, 2009
🙂 Two drink minimum? ….Pfft! Last night my friend took me to see my former patient services coordinator perform stand up comedy 🙂 The first three comedians in the line up were very painful to watch. However, the last three, including my patient services coordinator were hilarious 🙂 A great thing about being easily amused is there really is no need for a two drink minimum to make me laugh or giggle 🙂 I had fun AND. I love supporting people I know….it does not have to be high brow entertainment….this was just fun! 🙂
🙂 🙂 🙂
My friend got me a two wheeled scooter….it’s way quicker than walking! I’m definitely going to need a helmet and practice with my backpack on before I get to school 🙂
It’s a much smoother/coordinated ride when I push with my right foot. If I push with my left foot, I think it will translate into better gait and balance 🙂
I think I might need a little bell so people know I’m coming 🙂
July 20, 2009
With time, enough money for the bus, a map, and a little luck….I should be able to make it to my appointment at UC Berkeley to pick up my custom contact lenses….let mission vision recovery begin! 🙂
Sadly, my contact lenses were not what we had all hoped for….I could still see through them. The lenses will be sent back one more time and hopefully, the third time is a charm? We can only hope.
I had a magnificent evening watching one of our peeps perform acoustic guitar and sing. This lady is amazing…she had to relearn many things, including speaking. She performed and sang songs she had written for a nice audience in a cafe in San Francisco. A nice core group of fellow survivors met up and surprised her 🙂 And, I had a very yummy chocolate dipped coconut macaroon 🙂
After only sleeping for two hours the night before, I’m exhausted so, I’ll share some of the notable highlights/discoveries from today with you tomorrow 🙂 Good night!
July 21, 2009
I was completely wiped today. I took a nice long walk, people watched at the coffee shop, then, napped a little. Now, that I’m refreshed, I’m ready to update.
– Three successful bus rides, a good ride on BART to the city, a shuttle ride, and lots of walking 🙂 I covered a lot of miles on my independence treks! 🙂 There is no doubt in my mind that I will continue to improve and get stronger when I rely on myself to get to most places 🙂
– With map in hand, I walked to the Vision Center at UC Berkeley, which was very challenging since a lot of remodeling was going on so I had to divert from my planned route….
I’m very glad I allowed extra time to get to my appointment.
– In Berkeley, there were a lot of pedestrians who were talking to themselves. After a while, I realized, I may not have seen the “real” people they were talking to on their left side…
however, not everyone had a “real” person I could see and, trust me, I really started looking for them! 🙂
July 22, 2009
July 23, 2009
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August 1, 2009
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August 8, 2009
Thankfully I received a letter that my Botox was authorized. Yay! 🙂
Because an oncoming car had their turn signal on, I started to cross the street…..I was halfway through the first lane and this car started blaring their horn at me….how rude!….and I totally tripped because I got confused 😦
Grandpa, the tea house garden cat lazily napped and looked so peaceful and happy….all I wanted to do was curl up right next to him and take my own nap 🙂 I had a very healing energy/shiatsu massage yesterday at the massage school….I have been walking so well since then 🙂
I feel like the donut right now….I just hit my head on the corner of the wall….that corner was on my left….yikes! …..makes me feel like I should wear my helmet or wrap myself in a lot of toilet paper to pad the blows 🙂
August 10, 2009
I had a great chiropractor appointment. My best friend from 5th Grade, Monica, and her husband are visiting from Denmark. We had a totally fun day 🙂 , I’m completely exhausted and promise to give you the stories and photos tomorrow after my doctor’s appointment. Good night!
August 12, 2009
I’ve had a busy few days 🙂 I have updates! ….let me first start off with my fun day in San Francisco with Monica and Thomas!
August 12, 2009
August 13, 2009
AUGUST 15, 2009
August 17, 2009
August 18, 2009
August 20, 2009
August 21, 2009
August 22, 2009
I’m having AC issues in my dorm room 😦 It’s 80 degrees in my room! I experienced the dining hall….and had a very yummy salad and fruit 🙂
I am updating my blog from my room….I am dialed into the Fresno State Wireless Network. 🙂
Earlier, I went to the movies and saw Time Travelers….awesome movie! Then had gelato 🙂
I have been experiencing extreme fatigue….so many new things…..hot weather……. I get so overwhelmed with fatigue that if I do not close my eyes and lie down, I feel at risk of collapsing….I better listen to my body and not overdo it.
I full on walked into somebody yesterday…I felt terrible about it and I have a new big bruise.
I will be restarting my physical therapy soon….yay! 🙂
Classes start on Monday 🙂
August 24, 2009
Well, summer camp is over….. Last night Krystle and I had dinner at the dining hall….me with half my visual field gone was her guided sight….I was a little nervous so, I made sure she was protected and stayed on my right. Tonight, Krystle and I had dinner with Eduardo.
Yay! they fixed my a/c and lowered my bed today 🙂
I have some trepidation after my first class today….I’m nervous of the output I need to produce especially since it is not a concrete prescription of what needs to be done. My head is spinning. I have another class tomorrow morning so, I need to be off to bed so I can try to be as fresh as a daisy 🙂
August 25, 2009
Starting with the positive, at least I made it to my morning class on time. 🙂 This class has a lot of reading, 3 exams, participate in 7 counseling sessions, 1 reflection paper…so, at least I have a clear formula of what is expected of me. I feel utterly overwhelmed! Brand new information…instead of readers, I am responsible for pulling up documents and printing them on this electronic exchange named the “Blackboard”. I took a tour of the Library, had coffee at Starbucks, worked out at the little fitness area by my dorm. Tried to take a nap…I did not sleep very well last night. I woke up at 2:30am and have been up ever since 😦 Although I did not nap, I stayed horizontal for a few hours.
I have my final first day of class tomorrow. Then I will need to synthesize all the deliverables and somehow get myself on track. I definitely feel the slowed cognition and confusion….it has to improve. I am demanding a lot of myself…I’ll keep you posted….right now I feel my life preserver is not working and I potentially could drown….yikes!
I signed up for SCOUT, the golf cart that will take me to and fro, on an as needed basis, especially for long distances….that will certainly help…I hear the Fresno State ice cream at the Farm Market is incredible…..except it’s like almost three miles away from me….yay SCOUT! 🙂
I stopped by the involvement fair…..I spoke with the Marine recruiters. I asked with my disabilities, if I would be considered for Officer Candidacy School. I’m too old for the Marines! 😦 Other branches have different standards…..I was curious, if disabled, would the armed forces be inclusive? …..it does not hurt to ask…..plus I was curious 🙂
August 27, 2009
Oh my! I am almost done with my first week in school. Last night I had another first day of class….I am working in a group and we will present a chapter and a half of material later in the semester……this class, too, has a lot of reading.
I really have to keep in check that I have aneu brain.
Reading is super difficult and headache/swelling inducing. It took me almost two hours to read two chapters covering about thirty pages. I use the “blocking” technique I learned in speech therapy….a solid piece of paper I use as a “guide” to keep my eyes on the same line.
This is my impression of how I read:
I read very slowly…I see a whole bunch of letters and try my best to form words……however it is difficult to pull all those words together to create an overview and concept. Granted, the title of the book I am reading is “Theory and Practice of……” After two hours, I really do not have a good sense of what I read 😦
I am feeling very overwhelmed. I would feel a lot more comfortable if I read slowly but, could comprehend the concept and draw out important conclusions……maybe in time and with a lot of practice it will get better?
I should really try to get some sleep before class this morning….it’s 3:21am right now.
August 28, 2009
I met with SSD so we could brainstorm on how to overcome my academic struggles. We will try books in alternate format to see if it might help with comprehension. I was Krystle’s guided sight from SSD to Starbucks in the Library…..I am pleased to report she made it unscathed 🙂 ….I, on the other hand, ran into two people, the elevator door, a couch and table.
Krystle and I checked out the Recreation Center and did a mini workout. It’s a beautiful State of the Art fitness facility….one that we will frequent 🙂
I went to the Fresno State Women’s Volleyball Game with Starr….We have SPIRIT! 🙂 Our marching band, cheerleaders, and Bulldog Mascot were in full form!
August 29, 2009
I took things very easy today. Tried doing a little school work and paid bills. Tomorrow I will try to figure out the laundry and see if I can make progress on my assignments.
August 31, 2009
Yesterday, I woke up with a very swollen eye socket, a strong headache, very noticeable left sided weakness, numbness…I was scared 😦 ….eased into the day, had brunch at the dining hall….then slowly started to feel less neurological.
Note to self…..do not do laundry on Sunday! It took almost 4 hours to do one load…..There is no laundry room in my hall and a shortage of washing machines and dryers. Outcome: I have clean clothes but, it took forever!
For the first time in a little over 2 years….I made my own bed! 🙂 It was a big puzzle to solve but I did it! The hardest part was putting the pillow in the pillow case and, the fitted sheet on the corner furthest away from me. 🙂 When rehabbing at my rents, my Mom would always make my bed…..a nice luxury but, not necessarily independence making….
I’ve jumped in to independence boot camp! 🙂
September 1, 2009
Nausea 😦 Headache 😦 Swollen Ankle 😦 Fatigue 😦
I know that as I continue to try to read, the dots will connect and, I might be able to comprehend again…..hope 🙂
My third and final suitemate, Nan, moved in today. She is from Thailand, is Buddhist, is super sweet and quiet. I asked her if she would share her religion and home with me so I could learn.
I cannot believe it is already September!
September 3, 2009
I met with my professor today 🙂 AND, I’m on a four day weekend! 🙂 With Furlough and Labor Day, a four dayer, is the time I need to get caught up on my school work….lots of reading and comprehending to do….I have my first exam coming up on the 17th.
September 5, 2009
I totally need to work on my filter…..still impaired….Krystle is going to try to help retrain my filter….
I am officially “House Mama” of my suite 🙂
Darn tree, chair, AND pole got me….looking a little bruised 😦
I am beginning to think that Krystle and I are freak magnets or we are being preyed on because of our disabilities? The jury is still out….Krystle is blaming me as the “aneu” element to the equation 🙂 I am not convinced it’s me….however we have had some uncomfortable situations occur, especially in the dining hall….safety in numbers, call scout and, always carry a cellphone!
September 8, 2009
I walked to the pharmacy to pick up my medication…it took a little over an hour and a half round trip….
I stamped my foot at the bookstore to find the 411 on my last book needed for class. I unsolved the mystery! 🙂 AND, the books will be sent overnight, available in two days! 🙂 Finally!
My appointment at SSD was totally useless. My counselor and I had set an appointment with a specific focus. She did not do her part and, blamed her coworker for her not doing it. Really? Come On! I think I might ask to change counselors for one that might really want to work with a disabled student and problem solve….. I would rather feel that I have a partner with the same goal….helping me find the best way to become a successful student.
I heard there some cosmic storms happening….maybe that’s impacting a lot of what’s going on? 🙂
September 9, 2009
My day started off wonderful with a bouquet of floral sunshine delivered to my dorm from a good friend 🙂
I worked hard at my assignments and reading. Then at class, I started developing a mad headache with weird things going on my affected side. 😦 I think I need to invest in an ice pack. I hope by tomorrow my headache subsides. Cosmic storms, again?
September 10, 2009
My final textbook arrived today! 🙂 I feel more complete. 🙂
Last night, I bent down to get something and thunked my headachy head on the microfridge really hard…..I thought I broke the skin….ouchie! Today, I have a little egg on the left side of my forehead….that darn fridge came out of nowhere! 🙂 At least my head is feeling a little better today.
September 13, 2009
My brain hurts so much. I have never studied this hard!
Last night I thwacked my left forehead on the chair when I bent down to pick something up….I have a purple bruise 😦 I think I need to start wearing my helmet? 🙂
September 14, 2009
This morning, I sustained an ankle injury on my affected side 😦 ….for being sensory deprived and to feel pain it must be bad 😦
September 17, 2009
🙂 I took my first test this morning…I feel confident….I think I killed it! 🙂 I really hope the way I feel about the test is reflected in the grade I receive 🙂 I took the test at SSD in a private room and I read each question aloud, used post-it notes for place holders on the scantron and to help me read the question.
My foot/ankle has a green/purple swollen bruise the size of my hand 😦 I can weight bear a little bit but, it still really hurts to walk 😦 I dislike feeling gimpy, hurt, weak….I have a lot of spasticity. 😦 Krystle has sympathy foot pain so call us the “Hop-a-long Cassidys” 🙂
The doctor I saw at the student health center just phoned……apparently, I have a hairline fracture 😦 They will run some more imaging studies to verify. 😦
September 18, 2009
Foot fracture confirmed! 😦 I see the orthopedic specialist Monday morning. I do not operate crutches very well 😦 I do not feel when the crutch isn’t under my left arm pit so I look pretty ridiculous. I decided to increase the bulk… so I tied a towel with my multicolored knee high socks around the pit rest…..I get looks, but hey….it works! 🙂
September 20, 2009
If my math skills have not failed me, it looks like I got 100% on my first test 🙂 Yay! 🙂
September 21, 2009
I am in a walking cast 🙂 Yay! Bye, bye crutches! My fracture will take about 3 months to heal 😦 The great part is that My doctor authorized me to participate in the Gait Balance and Mobility Clinic/Physical Therapy on Campus….of course I need to wear my cast but, I’m back in PT 🙂 I start Wednesday….2x/week for 8 weeks 🙂
September 23, 2009
I’m back in PT 🙂 🙂 🙂 !
September 26, 2009
Yesterday, I attended the Western Region Disability Conference and volunteered as a room monitor from 7am-5:30pm. It was an amazing conference! I left exhausted, with a raging headache and very sore foot….I overdid it, but, enjoyed myself….so today, I was pretty useless.
September 28, 2009
We really started working on arm swing in PT this morning. If I turn my head or look to the right my arm swing on my affected side improves….hmmm…..the human body is fascinating! 🙂
September 29, 2009
Krystle and I left the perimeter, took public transit to pick up my medications, and explored a little 🙂 Survey says….Yes!!! 🙂 The bus drivers were super nice and now we have wide open possibilities of enhancing our academic careers with entertainment in the community 🙂
October 2, 2009
With midterms on the horizon I am struggling, overwhelmed, headachy, and not able to accomplish much. 😦
Today, Krystle and I took the bus downtown to get our “Special Rider” cards that allow us a reduced fare for being disabled. I am special! 🙂
October 6, 2009
I am on a total new kick……Wheatgrass Juice! 🙂 This stuff is amazing, energizing, and healing! Krystle totally laughs at me….she is like “go out to the lawn in front of our dorm and start munching” 🙂
I feel totally sore from PT yesterday….but, while walking unweighted on the treadmill, I did some goofy scanning exercises….result: today, I paid more attention to my left! 🙂 I need to somehow actively incorporate the left side of the world.
October 8, 2009
Krystle and I needed variety in our diet, so we bounced from Campus and took the bus to have very authentic Mexican food. 🙂 Then we hit a few stores/strip malls along our way back to explore. After our big adventure I got some carrot and wheatgrass juice….now off to study! 🙂
October 10, 2009
I took the Upper Division Writing Exam…super tough even with testing accommodations of extra time and quiet room. My brain really hurts. I get the results in 6 weeks.
October 13, 2009
To protect my walking cast from the rain….I put my knee high sock on, placed my foot in a garbage bag, wrapped it back down over the cast with rubber bands, tape and staples…..no rain is getting in my cast! 🙂 🙂 🙂
October 14, 2009
Walking Aneu and Confused 🙂 My PT at Fresno State is awesome. I had mt PT midterm and passed with flying colors! 🙂 I then had my hip and knee tested for the sources of strange noises and pain, and areas of muscle weaknesses or improper muscle firing order.
When walking, I have to take shorter strides, actively think about engaging my core muscles ALL the time and tucking my tail feathers under…I tend to arch my back. So, my divided attention of thinking of all those things while walking and scanning, I look totally lost and confused. Reminds me of a lady when I was an inpatient who wore a shirt that said “I’m lost, take me home!” 🙂
October 15, 2009
Today I am 26 months post-injury. I took a test and think I did well! 🙂 Then, Krystle thought going to the Rascal Flatts concert would be fun…so we went! 🙂
I was a little nervous about so many people at the concert and how loud it might be. The event center staff were wonderful, escorted us to our seats and protected us from the masses.
Then the concert started and I put my ear plug in my right ear…I discovered I have some hearing loss in my left ear 😦 The doctors had always suspected I probably had some hearing loss on my affected side since the auditory and visual pathway are very close; however, this was the first time it was blatantly noticeable to me 😦 😦 😦 I placed an ear plug in my left ear and stuck my fingers over the ear plugs…..it was soooooo loud and the sound waves shook and rumbled my body…..I thought for sure I was having an earthquake in my skull and my bone flap might fall off 🙂 ….silly, I know! 🙂
Although I developed a mad headache, I had fun doing something new with Krystle. Maybe next time we’ll go to a classical concert, play, or ?
October 21, 2009
I have a ton of spasticity and developed this weird little kick with my left foot when I walk 😦 I hope it goes away, I do not like it. I see the orthopaedist on Friday….I hope they cut me loose from the boot.
October 22, 2009
Taking notes in class is tough but, funny 🙂 I was trying to write “decrease” and wrote “deGrease” 🙂 Then inside I start chuckling and miss the rest of what I was supposed to write….oh well 🙂
October 23, 2009
Yay!!!! My foot is healing! Now I am on a modified walking boot schedule 🙂 I can wear shoes that match most of the time 🙂
October 24, 2009
Guess what the featured dessert was at the dining hall…orange jello 🙂 🙂 🙂 This was the first time I ate orange jello since I was released from the hospital…..yummy!
October 29, 2009
Last night my parents took Krystle and I out to dinner. 🙂 Then, this morning after class we drove to UCSF for my botox injections to reduce my spastcity on my left side. We used 540 units of botox and the appointment went great! 🙂 The Bay Bridge was closed so, we took an alternate route back to the house….super long day…I’m exhausted!
October 30, 2009
With the Bay Bridge still closed for repairs, I had another huge day of doctors appointments and public transit… I’m really exhausted! I walked into 4 people today…..thankfully the person I hit the hardest was really tall and so I hit my face into his chest 🙂 I got some initial paperwork for Medicare 🙂 Relief from paying insane amounts of money for COBRA are coming to an end soon 🙂 🙂 🙂
I leave tomorrow morning on the train to head back to school 🙂 I hope I can do some homework while in transit. I will wear Minnie Mouse ears proudly for Halloween 🙂 Have a very happy and safe Halloween!
October 31, 2009
I have a mild case of food poisoning 😦 Hurling hurts a lot more after massive brain trauma.
November 3, 2009
Still feeling a bit of GI distress 😦
Thankfully, I’m feeling less exhausted and was a little more productive 🙂
November 5, 2009
I signed up for winter intersession classes and my spring semester 🙂
I feel my Fall semester is winding down except I have two huge assignments, a group presentation, another test and regular school busy work…
November 10, 2009
Although I am dedicated and work so hard at my studies, I feel I am not as successful as I think I should be 😦
I took an upper division writing exam and needed 114 to pass…..I got 112…..my hypothesis….my testing accommodation of “quiet room” was not honored…. 😦 I will retake the test in January.
Ooooooo I’m so mad. My professor last night, trying to engage me in discussion said “here’s an easy one, even you can get”. I called him on it but, still. 😦
November 11, 2009
Thank you, Veterans!
This morning I had a lovely cup of coffee and coconut macaroon with aneu friend. What a nice way to start out the day! 🙂
November 12, 2009
The past two mornings I have had dressing malfunctions…..I tried putting my head through my sweater sleeve…..not the turtleneck! aye! 🙂
November 13, 2009
I’ve had a huge day! For an assignment, I had to visit a rehab facility…..I chose the brain injury/stroke rehabilitation unit at the local hospital. I think I might volunteer there 🙂 Then, I met with a friend of a friend over a cup of coffee. Took the bus with multiple transfers. I may be asked to share my story at a staff meeting at the hospital 🙂 Big day! 🙂
November 15, 2009
Wow! My assistive technology engineer had a meeting in Fresno and just dropped off my computer that has voice activated software, a text reader, and an ultra big cursor because I lose the mouse and cursor all the time 🙂 Now I need to get trained in the software but, this will certainly help with being a more successful student. 🙂
November 16, 2009
Scary! Krystle and I returned from our pharmacy outing. While waiting for SCOUT to pick us up to take us back to the dorms…..out of nowhere….a motorcycle almost slid into my feet…..thankfully, the rider walked away without injury but, it was scary to almost get taken out like a bowling pin….life is very unpredictable….you never know….
November 21, 2009
I caught a cold which completely wiped me out….I am just starting to feel better.
November 24, 2009
I’m a fighter! Last night as I was working on an appeal to defend my essay for the Upper Dvision Writing Exam….my mind wandered….
….I fought to live….I fight constantly to gain more function…this type of fighting shows my survival, strong will, determination…..
Other parts of my life should seem easy in comparison….however….that’s not the case…here are some of the highlights…..I have to fight insurance (still dealing with a reimbursement issue since February)….I am fighting to defend my essay (to try to get the one point I need to pass…which I probably wouldn’t need to do had my testing accommodations been honored)….I have to fight to dorm administration people because Krystle’s and my third suite mate is a serious problem…I had to fight the food service manager to get healthier options served……..
…would anyone like to get me boxing gloves, a helmet, and mouth guard? 🙂 🙂 🙂 I would like to feel like I’m not in the ring fighting for everything (no wonder my spasticity is difficult to control)…but, I do choose what is important to me to fight for…. 🙂 AND, I fight to win 😉
November 26, 2009
Happy Thanksgiving! I lay in bed this morning thinking off all the things I’m thankful for 🙂 🙂 🙂 My rents are coming for a visit and we’re going out to a restaurant 🙂 I hope all my aneu peeps have an incredible day!
I spent a little time reviewing some of my medical records today…so thankful I survived. I added a new image to my injury page (scroll to the bottom of the page)…my first UCSF ct scan!…10 hours after the initial rupture and right before surgery. Had my admitting nurse not seen me move my finger…which clinically I should not have been able to do..I would have not made it to surgery. Wow!
November 29, 2009
Yay! I’ve been recruited to be ” Exhibit A” for upper division PT students at Fresno State next Monday 🙂
December 2, 2009
Tonight, I turn in my last assignment 🙂 Then, it is lots of reading and studying for finals! 🙂
December 4, 2009
They sprayed for cockroaches in my suite today….yuck! Krystle’s and my third suite mate is filthy. Aye, dorm life! But, Krystle and I checked out apartments across the street from campus today. Perhaps she and I will reach the next level of independence? It’s worth looking into 🙂
Oh my! After returning back to our suite, Krystle went into anaphylactic shock from the fumes left by the exterminator….she’s doing better…except it was very, very scary. My eyes are burning and I developed a mad headache ;-(
December 7, 2009
I was Exhibit A today for the PT students 🙂 Funsy! I had a great time!
December 8, 2009
Krystle, the third suite mate and I had “arbitration” to see if we could resolve the conflict in the suite. I’m outraged! It was uncovered that this third suite mate was probably willfully violating policy because of our “serious, special needs” that she shouldn’t have to be exposed to! 😦 The nerve! 😦
December 10, 2009
Bittersweet. I am having a lot of increased spasticity and headaches from the additional stress from the dorm life 😦 But, the filthy suitemate is administratively being moved out 🙂 Except, in the arbitration decision I was sanctioned; so I filed a five page appeal.
I got word from my upper division writing exam appeal and, I received two more points on my essay scores based on my appeal…..I passed, I passed! 🙂 Yipeee!
Fight, fight, fight…..really anyone want to get me boxing gloves? 🙂
December 12, 2009
Krystle and I checked out a few apartments in the rain….hope for not having to live in the dorm 🙂
December 14, 2009
One final down! 🙂 Two more to go…..
December 16, 2009
In forty-five minutes I turn in my last final and have a pizza party 🙂 🙂 🙂 Then my rents and I head back to their house because I have doctors appointments. That was so nice they picked me up.
I am super exhausted and can barely keep my eyes open. I have studied soooo hard and I have completed my first semester in graduate school 🙂 For nearly being declared brain dead a little over two years ago, I am doing excellent!!! 🙂 🙂 🙂
December 18, 2009
Since I cannot type using my left hand, the Department of Rehabilitation purchased voice-recognition software for me, and I have just been trained. So, I am typing through voice right now 🙂 This will help me be more successful in school and in life.
I have to train the program so it adapts to my voice and does what I want it to do. It’s way different to speak to type but, I imagine the more I use it, the better tool it will be.
December 20, 2009
I guess the floor was really hungry today 🙂 I still have difficulty holding apple slices with my affected hand…..so, instead of feeding me, the floor got fed. Oh Well! 🙂 Practice, practice, practice.
December 23, 2009
On a spontaneous whim, I think I will head to Oregon for a few days next week 🙂 I think will reach my 10,000 miles of tracks traveled with Amtrak this year 🙂 I hope I get an award or, maybe an honorary conductor status? 🙂
December 27, 2009
I got my Medicare card in the mail! 🙂 🙂 🙂
December 28, 2009
I laminated a copy of my Medicare card with four digits of my social security number blocked out. I am super confused about Medicare Advantage vs. Medigap and Medicare part D……which is the best option for me? I called HICAP (free health insurance advocates for Medicare but, they’re booked). And then, which option is better to choose with the pending health care reform…..like I said, Super Confused!
In two days I leave on the train to visit my friend in Oregon 🙂 10,000 miles traveled on Amtrak! Woohoo!
I am thinking about a year in review post and putting an aneu “Aneu Day” page which only would include 2010….
I submitted a volunteer app at the brain injury rehab hospital near school….I heard from them today 🙂
I was asked to speak to first year med students at UCSF in May next year 🙂 Apparently, they really enjoyed my presentation this year 🙂
I made progress on a secret project….exciting!
My tummy feels nauseous and, I’m exhausted. Like a normal college student, I brought home laundry and have been doing laundry all day.
December 30, 2009
In thirty minutes I leave to catch my train 🙂 🙂 🙂
December 31, 2009
My train ride was beautiful. It was raining in Eugene, Oregon when I arrived. It was great to spend time with my friend and explore a new city 🙂 We had a nice lunch and picked up some goodies from her favorite bakery. I finally got to taste the cranberry cheesecake she has been raving about…yummy! And, I picked up a vegan oatmeal, apricot, almond cookie for the plane ride home on the 1st. We went to sleep around 9pm because we were both exhausted. Goodbye, 2009!
Please Visit my “Aneu Day 2010+” page for my Aneu Day 2010 entries 🙂 🙂 🙂