Disappointed by the Mail

I was sorely disappointed by my mail just now. I  ordered a case and some other accessories for my e-reader. They were shipped from California, so I was not expecting for a few more days. I ingdom. am however expecting my one hope of gastroparesis  (henceforth GP) symptom management short of surgery. The non FDA-approved drug domperidone is winging its way to me from the United Kingdom. I have been  having horredndously bad GP days for the last few days. I cannot tolerate solid food so am forced to rely on a full liquid diet consisting of three nutrition shakes a day and water. Yummy. Today I have so much abdominal pain, despite resorting to all liquids.
I don't understand. I am on an antibiotic in hopes of helping the stomach empty faster. I take it like clockwork. I still feel awful. I need the new drug to come yesterday.

Back to the mail. I checked it tonight. After digging past a stack of junk mail, I saw three good sized mailers sitting there. My heart,may have beat a tiny bit faster.Finally, I could look forward to feeling even a little better. I ripped the packages open and they were not foreign drugs. They were e-reader accessories. I am sad now.

Come on drugs!

Edited to add: It CAME! I will start it tomorrow at breakfast. Hopefully my salvation has come in a small cardboard box sporting a customs sticker.

If I Knew Then What I Know Now: What I Would Say About Occupational and Physical Therapies

This is the first post in a series I am calling "If I Knew Then What I Know Now."  In this series I will be exploring aspects of growing up with a disabilty and speaking from the perspective of my younger self. Future topics will include education (Special or Regular) medical interventions, and others as they come up.

I am 4. I am sitting in a whirlpool tub eating a drippy pear. There are people around me talking about me but I don't care. The water is warm and feels good on my cold and painful legs. I recently spent some scary time in the hospital. There was a very mean lady who didn't seem to care when I cried. I know I am at a place where sometimes they make me do things that are very hard. I know that if I even just try to do what the grown-ups want, I get a fun treat.I use the coolest hot pink forearm crutches to do laps around the rehab department. This is physical therapy.

I am 9, in third grade. Like all third graders, I am learning cursive. For me to be anywhere near successful at handwriting I need hand-over-hand assistance from G. G. is my classroom aide. She does things for me like stretch me on a rug while the other kids are at gym. She is also the source of the four  most hated words to me right now. "Use two hands, Emma." I try, I try so hard. My hand doesn't cooperate. This feels like a failure to me. I must hear "Use two hands, Emma" 30 times a day. I can't use two hands, please stop making me try! I know the hope is that by using my hand more I  will get more functional use out of it, but really it will be useless in the end. Time would be better spent teaching me one-handed methods for things. I will soon become a one-handed wonder. This is Occupational Therapy.

I am 13. I have just had surgery that requires me to use a power wheelchair full time. It sucks.  A lot. It sucks that the farthest I can walk now is about 10 feet between a set of parallel bars. I need help to understand my new vantage point. I understand that I probably will never walk the same again. PT becomes about helping me adjust to my new world. I know that things will be a lot easier once I except that this is the way things are. I need help to do that.Please see that. Please.

I am 15. I go to a boarding school for kids with disabilities. The therapy there is amazing. I spend an hour a week in a heated pool doing PT. I ride a bike. I walk on a treadmill. I get stretched every single day (twice a day.) I get Reike massagges once and the contracture in my left elbow disappears, I learn how to use a ruler to guide my eye when doing math problems. Using that method, I finally get a perfect score on a math test. I am so happy to be here. I know that there are things I will need to do that will mean I will need to leave, but as far as therapies go, I couldn't ask for more.

I am 17. I return to my old stand by therapy routines. I  begin making circuits in my walker around the library at school every day at lunch. I am finding it harder and harder to walk. I fall and crack my tailbone. I decide finally that functional walking is not a realistic goal. I feel defeated. I still walk in PT. But I finally accept that I am not a walker anymore.

I am 26. Just out of the hospital. Barely strong enough to sit up. I go to PT again. This time my goal is to be able to stand without exhausting myself. I think a lot of how much things have changed. I struggle mightily to achieve baseline function. I eventually meet that goal after a lot of work.

Overall I think all of my therapeutic experiences had a combined positive impact on my life and level of function. Some experiences were painful or depressing, but I am deeply grateful for each.

Oh E-reader How Do I Love Thee? Let Me Count the Ways.

A few weeks ago, a little birdie told me to watch my mail for a Christmas gift. Late that week, a smallish box emblazoned with the logo of a ginormous internet retailer appeared at my door. I immediately called  my mom to ask if I could open the box right then. She said no, not wanting me to wreck Christmas. Luckily my grandmother, the giver of the gift gave her permission to open the box.Grammy was always our sugar dealer as kids, doling out extra dollops of whipped cream over our parents objections. Giving us another cookie even though we'd already had three. I equate her allowing me to open this present early to those acts of generous spoiling. She is still my sugar dealer, only instead of food she gave me amazing technology.

I have been very resistant to the whole e-reader thing. I LOVE books. My favorite smells in the world are "new book" and "very old book." One speaks of a promise of adventure, the other holds the history of each reader to hold the book. I was sure I would go  into withdrawl, pine for my old friends paperbacks if ever I made the leap to e-reader-land. While I will always love the heft of paper and cloth, I cannot imagine my reading life without my e-reader. I downloaded a book from ny library the first night I had it and haven't looked back.

Here is a rundown of some of my favorite things.

1) The ability to increase text size as needed. This feature means that anything I want to read I can read. With regular books, the size of the text in a book determined whether I could be interested in it or not. Now if a book I want to read has small print in it's orignal form, I can easily increase the text size with a few taps to the touch-screen device.

2) It is lighter than a paperback. Muscle fatigue is sometimes a factor in what I can or cannot read. Large books can mean I can't take them to bed with me because there would be nothing to rest the bulk bof the book on. This problem is totally resolved with my e-reader. The other day, I was reading a 600-page book, and I couldn't believe that I was holding it with one hand. Awesome.

3) The built in dictionary. It just makes me feel smarter. My gastroparesis is throwing me all kinds of new terminology, and with a few taps I can learn the meaning of any word that has me stumped.

4) The capacticy. 3,000 books would be hard for me to reach. The idea that I can be carrying around that many books makes me drool. I can also read a lot faster on it than with a regular book. In the three weeks I've had the device, I've read six books. Two books  per weeks, pretty amazing.

I am officially an e-reader convert.

Meeting Gastroparesis Part Two: Ultrasound, Eggs, and An Answer

When last we met, I had been experiencing troubling symptoms for about three months anhd had been asked to undergo an ultrasound to rule out gallstones. I arranged to use Paratransit for the trip and got all the paperwork together.

The hardest part about that day was the fact that I needed to be completely NPO (Nothing by Mouth) prior to the exam. Not eating would not be a problem since I was doing so little of that lately, Not being able to drink, now that was a different story. I was up at 7 for an appointment at noon. I could on;ly drink enough water to take my morning medications. As a master pill swallower, this meant very little water for me.I distracted myself by playing online until Paratransit came to fetch me. I got to the hospital about an hour ahead of my appointment but luckily they were able to get me in early. After some finagling with techs who could not understand the idea that they'd need to help me get from my chair to the gurney and back again, the exam was done.

I waited the obligatory week, and called my GI's office for the results. She called me back the next day and said the ultrasound did not show any abnormalities in my gallbladder. As she always does, she asked how I was feelilng. I told her honestly that the nausea and pain were out of control. She said she had one last idea to try to solve the puzzle. She sent me an order for a gastric  emptying scan. After playing phone tag with the hospital's scheduling line, I got it scheduled for about two weeks later. This is where the real fun started,

Before having one ordered I'd never heard of a gastric emptying scan. So, being the compulsive researcher I am I immediately Goo.gled it. It turns out there is only one diagnosis to be confirmed or ruled out by the gastric emptying scan. I'll give you three guesses what it is. If you guessed gastroparesis, you win! For the test I had eat two entire scrambled eggs (a lot for me these days sadly). The eggs contained a small amount of radioactive tracer to allow their progresss through the stomach to be tracked. After I choked down the eggs, I was transfered onto the scanner table and strapped down six ways to Sunday. I have an irrational fear of scanner or X-ray tables that deserves a post of it's own, so I was very grateful for the extra security or at least the illusion of it. I freaked out for the first ten or so minutes of the scan which took place in a machine somewhere between a CT scanner and an MRI. After lying still for 90 minutes, I was released from my bonds and told to follow up in a week for results.

I did as I was told and called my GI first thing the next Wednesday morning. I spent the day anxiously awaiting the call from  my GI. Simultanously I was having pulmonary function tests done to check my asthma weary lungs. The GI didn't call that day. She called that night. From her home, or some other restricted number. I missed her call, but she left me a nice long voice mail. The gastric emptying scan was abnormal, meaning that the food sat in my stomach for much longer than normal and would certainly explain my symptoms. She wanted me to come in to the office to discuss next steps. I called the next day and made an appointment for two weeks later. I had a diagnosis!

Unfortunately my research was not really hopeful for a quick fix, Many people with the disorder struggle to get good symptom control and maintain adequate nutrition. There are only really two drugs shown to treat symptoms of gastroparesis. One has awesome side effects like dyskenias, the other is not available in the U.S. Great news! So that's where things stand right now. I am waiting for the non-FDA approved drug to get here from the UK. While I'm waiting I am on an antibiotic as a prokinetic agent. As proof of its awesome power to do absolutely nothing, I have eaten nothing  but saltines and Ensure since starting it. A week ago.

Lovely.

Meeting Gastroparesis Part One

I have felt sick for months. It began on an ordinary July day. I had stayed home sick from work to recover from an asthma flare, I woke up that morning feeling exhausted and knew that a sick day would be better than trying to work in that condition. I managed my asthma through the morning. It got to be lunchtime. I pulled out a yogurt and a string cheese and ate them. I was so tired that I went back to bed for about an hour. I woke up in a lot of pain and became ill. I was sick several times that day.

The next day I decided not to eat much to hopefully get my system back on track. I ended up needing to come home early from work that day because I was too sick. That was a Friday. I struggled through the weekend, relying on sports drink and saltines to get me through. On Tuesday, I broke down and called my primary doctor.

She thought that my recent round of steroids had caused some inflammation of the lining of my stomach and put me on a medication to treat that and instructed me to call her in a week. I dutifully took the medication and felt no better. I called her as instructed and she decided to refer me to a gastroentrologist. She even called and made the appointment for me. I was elated, now I would be getting better and could eat again! Boy was I mistaken.

Appointment day came. I felt awful that day. I rolled into a tiny exam room.  The doctor walked in and we went over my entire medical history. He wanted to know every medication, every surgery. We talked for 20 minutes before he laid hands on me. He eventually told me to eat more and increase my fiber intake. At this point I was desperate to feel better, so I forced myself to eat more food and fiber. Three weeks passed and I went back to that GI to follow up, having followed his advice and not feeling any better. We had a conversation during which I realized he had no clue what was wrong. He recommended I see a neurologist. When I asked why, he claimed that I may have a second brain   injury to blame for my symptoms. I did not buy this. The next day I made it my mission to find a second opinion. After some searching and calling around I found a new GI and made an appointment for the next week. I had hope again!

Appointment day came around and we went over my recent history. I told about the nausea and pain. I also told her how unhappy I was with my first GI. She was very understanding and did not buy the previous  doctor's theory.  She genuinely wanted to help me. Her first idea was to run a test called an endoscopy. She would sedate me very heavily and pass a flexible lighted scope from my mouth, through my esophagus and finally into my stomach to see what the structures of my esophagus and stomach looked like. Because of logistics, the procedure was scheduled for six weeks later. An eternity, but at least I was getting somewhere,

The day of the procedure was kind of a blur of rushing to get to the hospital on time and finally the procedure itself. The doctor was able to tell me that my stomach was inflamed but asked me to call her office in a week to get the results of biopsies she had taken. She also added another medication to treat any reflux that might be happening.  When I called for the biopsy results, the doctor called me back herself. She said that the biopsies were normal. She asked how I was feeling and determined based on my answer of  "lousy" that she wanted to get an ultrasound to check my gallbladder.

Now it's late and I will put this long story to rest for tonight. Stay tuned for part two, "Ultrasounds, Scary Scrambled Eggs and an Answer"

Now For Something Completely Different: Finding My Passion

The header of my blog proclaims that I am a scholar. My first post explained that I am an historian. Let me tell you how the wonders of history came into my life.

I always loved reading as a child, I read my first historical fiction in third grade. One of those horrendous (I now realize) "Dear America" books  where a significant historic moment is watered down in order for children to understand. As an eight or nine year old though, I couldn't get enough. Soon I moved on to Anne Rinaldi and other writers. Then I began to go through stretches of time where I would only want to read things describing a particular era of history. I asked for the staple Holocaust memoir "Anne Frank:The Diary of a Young Girl" the Christmas of my tenth year and that led to a two year jag where I asked for books on the Holocaust for every birthday and Christmas. I also went through a Reveloutionary War phase. I still think I'm in a Civil War phase.

Of all the blood soaked wars this country has seen, I am most fascinated by the Civil War. I have very clear memories of warm summer days spent on the front porch of my grandparents' house hearing the story of a long-dead ancestor who had fought in that war. I remember seeing the faded letters as my grandfather held them and with a tone of reverence in his voice, read passages from them. The letters detail the daily struggles of a simple country doctor thrust into war. He quitely yearns for his hearth and home, his wife and his children. His sometimes heartfelt depictions and always picturesque writing are the reason I first loved history. If there were stories this cool in my own family, what would I find if I looked a little harder?

Fast forward about ten years or so. I was a sophmore in college. I had just decided that no, I did not want to be a teacher. Instead I became a history major. I was never sure what a degree in history would do for me, but I knew I would enjoy the journey, I did. I discovered the thing that has become my passion, though right now is relegated to a neglected hobby. I discovered disability studies.

 A relatively new field, disability studies is a cross disciplinary field that explores disability through several different perspectives. Theory, literature, andmost importantly for me, history. I love so much about disability history. I love the dark and twisted nature of the beast. I love the stories of igenuity of people with disabilities solving problems for themselves when  systems meant to serve them fail. What's not to love?

On Lungs

I promised myself I wouldn't post again until I had something non medical to talk about.

And then today happened.

As I mentioned before, I have asthma. I think I've always had it to some degree. I remember needing a nebulizer treatment a few times when I would get colds growing up. Since I moved away from home my lungs have gotten progressively touchier. For my first year+ on my own while I went through the process of finding a primary care provider, I made multiple trips to Emergency Rooms in search of relief from the breath-stealing cough and wheezing that would come over me at random and seemingly for no reason.

When I finally found a primary doctor, it did not take her long to diagnose me with asthma and prescribe a course of oral steroids. You see I had somehow managed to come to my very first appointment with her in the middle of an asthma attack. Awesome planning there. That round of steroids would become the first  many such fun roller coaster rides. It has gotten to the point where if by some miracle I make it more than a month without an ER trip, primary visit, or steroid shot, I celebrate. This is the pattern even while I am taking not one, not two but four different  controller medications. Now back to today.

I woke up a little earlier than normal, excited to get a jump on the day as I needed to work a little longer today to begin to make up for leaving early tomorrow to see Dr. Guts. As a side note, this will be my first visit with Dr. Guts since receiving my gastroparesis  diagnosis two weeks ago, good thoughts would be appreciated. Anyway, I left my apartment. This is where the trouble started.

It is mid-December and cooold around here. Upon breathing in the 20-something degree air, my lungs went on strike. The cough started instantaneously and the elephant/boa constrictor cross took up residence on my chest. I pushed on and made it to work. At this point the cough, I not-so-affectionately call "Sparky" since it makes me sound like a spunky puppy dog, is in full-on breath stealing mode. 
Ten minutes after getting to the office I got nervous that I wouldn't make it through the day without a doctor or ER trip. I made it through, hanging by a thread. Now I get to begin the countdown to the next flare as I manage this one.  I hope I can get it under control without resorting to steriods. Those are nasty nasty creatures! eight inhaler shots today did little to silence Sparky though, so I'm not so optimistic. We'll see I guess.

Whatever happens, it's nothing I haven't seen before.

Medical Mumbo-Jumbo Part One CP and me

Look two posts in one night! since my first post told you that I have dealt with interesting challenges in my life, I thought that it was important that my first medical-ly post introduce you to my oldest companion, cerebral palsy.

People often ask,( okay maybe not "people"per se, maybe one person one time asked me this question, just go with me here)if a cure was found for CP tomorrow, would I use it? A valid and interesting question. The askers of this question are often shocked when they hear my answer because in fact I would not get rid of my CP tomorrow if it were possible. While it makes life much more difficult then the lives of most typical 26-year-olds, it has also taught me many valuable skills and lessons.I will go into these in more detail in another post but suffice it to say that I would not change this facet of my life if given the choice.

Every person with cerebral palsy is affected by the disorder differently. I have what's called spastic   cerebral palsy. This means that my muscle tone is higher than normal resulting in my muscles being  tighter than normal.  It also means that my left arm is essentially a decorative item. The spasticity of CP has tightened the muscles in my left arm and hand to such a degree that my left elbow will always have a small bend  and my fingers on that hand have no free will. They often curl toward the center of my palm in an attempt to avoid doing actual work. That strategy is successful. Ever tried to grasp a small object in a closed fist? Try it sometime it's a super fun party game.


That same lovely high muscle tone also impacts my legs. My hamstrings quadricep and hips are the most noticeable manifestations of spasticity in my legs. My legs are weak, I can only stand comfortably for about a minute at a time unsupported. The important thing in that sentence though is that I can stand. This is thanks to an awesome orthopedic surgeon who was ever mindful of my desire to walk for as long as was possible, and when that was no longer a possibility he still strove to preserve my ability to stand and transfer from my wheelchair to my bed, the toilet and shower, and other chairs. Over the years it did become necessary for me to stop walking as my primary mode of mobility and I have now used a power wheelchair for fully half my life. My "tank" and I get along well.

Lastly, I am blind in my right eye. Of all the things that CP has done to my body this one is the one that requires the most compensation and adaptation.I have no depth perception or peripheral vision. I can't count the number of times I have driven off full-fledged curbs thinking that I was close to the curb cut. Yeah, not so much. As an easy way to think of the effects that CP has on me, I often think of that old children's song "One Eyed,One Horned Flying Purple People Eater." Yeah, that's me minus the horn and  the cannibalism.

First Post: Who I Am

Sometimes it feels as though content on the Internet just materializes there. Not so. Majority of it is in fact human generated. I thought the most logical place for me to begin a blog about me is to tell you a little bit about who I am. I am a young woman of 26 who is just trying to figure out how to be a grown-up. I live  in a major city in the US. Have a great job, great friends, great family a lot going for me really. What is not so great about my life right now is that for the last two  and a half years I have battled with various chronic illnesses. I have been diagnosed with asthma, depression, heart and blood pressure issues, and most recently a disorder called gastroparesis. A lot to take on right? Right. Anyone facing a litany of medical problems like that would be hard pressed to get out of bed in the morning. For me though, it is physically  hard for me to get out of bed every morning. I have cerebral palsy. Now don't think that this blog is just going to be a giant whine fest. I just need you to know where I'm coming from at this moment. It is not my nature to complain and ask why me. I try to find the positive in situations where that might not seem feasible. Facing this new challenge of learning to assimilate chronic illness into my life and identity, I have realized that I cannot do it on my own. I turn to you gentle readers to provide me with the support I so desperately need.

Fear not, this new relationship will not be a one-way street. As someone having lived with challenges my whole life I have many stories and pearls of wisdom to share. I will try to help you as much is this strange media of blogging allows.

I am much more than a medical conundrum. I am a book lover, an advocate, a movie lover, a writer (obviously hence the blog) I am an historian, and lastly, I love hockey. So from time to time you will get posts about all of these things and more as the fancy strikes me