Today I finally watched Including Samuel. The documentary tells the story of one family's journey to educate and integrate their son Samuel, who has cerebral palsy. I've wanted to watch the film for a long time. The family is from New Hampshire, my home state. I also consider myself an inclusion success story.
I began my public school career at the age of three. I had been receiving therapy through my county's Early Intervention program since about nine months old. Federal law says that at age three services should be provided by the public school. So I was bussed about an hour each way every day to a preschool program in another district that was tailored to meet the needs of students with disabilities. After that first year, my parents led the charge to bring the teacher from that program to my district. The program that was born out of that idea still exists today. I spent two years in the preschool program. The hope was that with the right support my motor skills would catch up and I could join my classmates. At age five, I became one of the last kids to participate in what was called "Readiness." It was a class between preschool and kindergarten I spent a lot of time working to improve my fine motor skills.
I had a fantastic one-on-one aide in those years. She was literally an ever-present helping hand, She also learned the range of motion routine that we needed to do twice a day to maintain my flexibility. I admit it wasn't always easy to have to be pulled away from my class to do the stretching, but as I got older we were able to find time during the day to do it that was minimally disruptive. Eventually, we did it either during gym or recess.
Aside from needing more physical help than my peers, I and my parents wanted me to be treated just like the other kids. I did the same classwork, took the same tests, completed the same projects as everyone else. I had accommodations yes, but academic expectations were no different for me because of them. Starting in second grade, I was provided with a computer for use in completing class and homework. This accommodation was made once my school team realized that writing by hand was never going an easy thing for me. I was provided a laptop every couple of years through the end of high school.
There were battles at every turn it seemed. I participated in a summer school program of sorts focused on maintaining my physical abilities over the summers and minimize the risk of physical regression. My parents always went to the mat to get the district to continue paying for my aide so that I could start each year in the best shape possible, One year, the district even threatened to cut my aide's job during a round of spending cuts. I wrote a speech and was ready to deliver it at a school board meeting when the matter was somehow resolved without any job losses.
There's a lot more to say on my experiences with inclusion, so I plan to make this a series of posts. Stay tuned for more!
Showing posts with label cp. Show all posts
Showing posts with label cp. Show all posts
Sunday, February 17, 2013
Sunday, February 10, 2013
Why?
I am not religious in the slightest. Wasn't raised to believe anything in particular. As I have aged, I've started to believe that *maybe* there's a higher power. I just can't bear to think there isn't some reason for all that has gone wrong in my life. I am at a low point right now. The way things are going is just SO unfair. Why did I have to be diagnosed with gastroparesis? Why was median arcuate ligament syndrome not the reason behind it all? Why didn't I respond to the stimulator like I expected? Why did my only option have to be TPN?
Why, when I was already born in a body that fights me every single day? When I already have to work ten times harder to accomplish the simplest things? I always think it's no good to complain about how unjust my life is. I figure I lost any claim to living a fair life in the common meaning of those words, when I was born with CP. I can't help it though. What did I EVER do to deserve any of this? All I've ever done is try to live a good life. I fought so hard for this life, and I'm slowly losing my grip on it. I can't give up. I know that. Giving up would be tantamount to suicide This disease has stolen so much from me in the last 18 months. It will NOT kill me. If I'm sure of nothing else right now, I'm sure of that. That doesn't mean I don't wish it away with every thought every single day.
People say that God doesn't give you more than you can handle. Yes, yes he does. I am desperate for something to change. I'm not strong enough for this. It will break me soon, I can feel it. I know these things are meant to show people's strength but I happen to have plenty of strength. I do not want to be tested. Please, I'm bruised. Leave me alone.
Why, when I was already born in a body that fights me every single day? When I already have to work ten times harder to accomplish the simplest things? I always think it's no good to complain about how unjust my life is. I figure I lost any claim to living a fair life in the common meaning of those words, when I was born with CP. I can't help it though. What did I EVER do to deserve any of this? All I've ever done is try to live a good life. I fought so hard for this life, and I'm slowly losing my grip on it. I can't give up. I know that. Giving up would be tantamount to suicide This disease has stolen so much from me in the last 18 months. It will NOT kill me. If I'm sure of nothing else right now, I'm sure of that. That doesn't mean I don't wish it away with every thought every single day.
People say that God doesn't give you more than you can handle. Yes, yes he does. I am desperate for something to change. I'm not strong enough for this. It will break me soon, I can feel it. I know these things are meant to show people's strength but I happen to have plenty of strength. I do not want to be tested. Please, I'm bruised. Leave me alone.
Tuesday, February 5, 2013
And She's Down!
So today was interesting. At around 3:00 this morning, I got up to go the bathroom. Thanks TPN. Routine over, I ventured back to my bedroom to pull my shorts up. I stood up, got my shorts up, then promptly lost my balance. I was able to control my descent, but I wound up on the floor. Well hell, what do I do now? I haven't fallen in a *very* long time, so was rather clueless as to what to do.
When I walked, I was a skilled faller. They taught me how to fall-and to recover from a fall -in phyiscal therapy. They fully expected me to fall, so I was taught the safest ways to do it. I think my last fall was at age 15 maybe. Anyway, my falling skills are very rusty.
I tried for a few minutes to get on my hands and knees My knees voiced their strong objection to that idea, though. Trying to work around my running TPN was not happening. So, getting up on my own was not an option. My two choices were to wait the two ish hours until my home care nurse got there. I would be on the floor, but wasn't in danger or injured. Or I could call 911 and get off the floor. The cons to this idea were that my apartment door was locked, and the firemen would have to break in to get to me. I almost chose to stay on the floor. Until I remembered that my TPN was still running and would likely make me need the bathroom again. My bedroom is carpeted, this would've been a disaster. So, I fished my phone from beside my chair and dialed. After about twenty minutes, they were here. It took another ten minutes for them to dismantle the lock and get inside. Then it only took two guys all of two minutes to get me back to my bed,
They recommended I have my complex put something called a Knox box on my apartment. It's a box that only they have a key to. Inside would be a key to my apartment. This would eliminate the need for future breaking and rescuing's to happen. I called my complex to ask about such a thing. They had no clue.
Never a dull moment around here!
When I walked, I was a skilled faller. They taught me how to fall-and to recover from a fall -in phyiscal therapy. They fully expected me to fall, so I was taught the safest ways to do it. I think my last fall was at age 15 maybe. Anyway, my falling skills are very rusty.
I tried for a few minutes to get on my hands and knees My knees voiced their strong objection to that idea, though. Trying to work around my running TPN was not happening. So, getting up on my own was not an option. My two choices were to wait the two ish hours until my home care nurse got there. I would be on the floor, but wasn't in danger or injured. Or I could call 911 and get off the floor. The cons to this idea were that my apartment door was locked, and the firemen would have to break in to get to me. I almost chose to stay on the floor. Until I remembered that my TPN was still running and would likely make me need the bathroom again. My bedroom is carpeted, this would've been a disaster. So, I fished my phone from beside my chair and dialed. After about twenty minutes, they were here. It took another ten minutes for them to dismantle the lock and get inside. Then it only took two guys all of two minutes to get me back to my bed,
They recommended I have my complex put something called a Knox box on my apartment. It's a box that only they have a key to. Inside would be a key to my apartment. This would eliminate the need for future breaking and rescuing's to happen. I called my complex to ask about such a thing. They had no clue.
Never a dull moment around here!
Sunday, February 3, 2013
29 Things About GP
29 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Gastroparesis and moderate probable Colonic Inertia
2. I was diagnosed in November 2011 just having turned 26.
3. But I had symptoms since:July 2011 thank God for good doctors
4. The biggest adjustment I’ve had to make is :Finding ways to be social without food. Food is everywhere!.
5. Most people assume that I miss food. Not so. I have not been truly hungry in 18 months..
6. The hardest part about mornings are: The nausea. It overwhelms me and it takes a lot of energy to push past it and get out of bed.
7. My favorite medical TV show is: It was ER. Then House. If anybody knows of a real life House please let me know! I liked Grey's Anatomy a lot more in the early years than I do now, still watch that too though
8. A gadget I couldn’t live without is: My Ipod. Music is my happy place. Always has been, but has become critical to maintaining my sanity since getting sick. After that, my laptop or tablet are great for staying in touch with family and friends who are spread out all over the place.
9. The hardest part about nights is Right now, it's being hooked up to my TPN. I'm on it 12 hours a day now. Either 5P-5A on weekdays, or 7P-7A on weekends. I have to get up at least twice to pee. It's about to get more annoying since I'm chronically clinically dehydrated and am finally going to let them add more sterile water to my bags. The dietitian will be happy since she's been suggesting it the last couple of weeks.
10. Each day I take Nine pills, two inhalers and a nasal spray. With the arrival of my PICC I now get IV zofran twice a day. I'm on a long course of steriods right now too so they're in the mix.
11. Regarding alternative treatments Fine by me.
12. If I had to choose between an invisible illness or visible I would choose:Since I already used a chair before GP joined the party, I don't get a choice. I have found myself wishing that I didn't have CP a lot lately. Generally it is easier to live with CP, if only because the chair does a lot of the explaining for me. I am still really bad at making why I don't/can't eat make sense to people.
13. Regarding working and career: My work is extremely important to me. It's become a great distraction as my health has gotten shakier. My coworkers are a great support. I will do everything in my power to continue working.
14. People would be surprised to know: That I have seriously considered medical school several times. If I was working with a full compliment of body parts, I totally would've gone. I think my life has taught me so much that would benefit other people. I really like the puzzle-solving aspect of medicine too.
15. The hardest thing to accept about my new reality has been: The unpredictability. I just get used to a progression, the idea of needing the next more invasive surgery or intervention and it all changes again. I think of TPN as the last resort so some of the living on shifting sand feeling has gotten better. The next thing is death, and I'll be damned if I'll let that happen!
16. Something I never thought I could do with my illness that I did was: I have made some great new friends through the online support group. Even though we will likely never meet in real life, that group has become like family to me. I hate having GP, but without it, I would never have met some truly incredible people.
17. The commercials about my illness: Don't exist Even though GP is *not* a rare disease, there is very little awareness about it. The lack of awareness is particularly evident and problematic in the medical community. Case in point, the last time I saw my primary doctor, she asked why we were considering nutrition support. In her eyes I looked great!
18. Something I really miss doing since I was diagnosed is: Taking advantage of the great things my city has to offer. Before GP, I was always going somewhere or doing something on weekends. Now even managing to shower every day is a stretch
19. It was really hard to have to give up My conception of health. I always considered myself a healthy person. I had a disability, yes, but that didn't make me sick. Now I am very sick and have a disability.
20. A new hobby I have taken up since my diagnosis is: Blogging. It is very therapeutic for me to come here and express myself in a much more articulate way than I could manage when I speak.
21. If I could have one day of feeling normal again I would: Eat at my favorite restaurant in the city. Then I'd go spend the day with friends at the museums or at the movies. Then I'd eat at another restaurant Then come home and eat some more!
22. My illness has taught me: Never to take anything for granted. Eighteen months ago, I had no idea how radically life would change for me. I should've appreciated my life before a whole lot more than I did.
23. Want to know a secret? One thing people say that gets under my skin is: "But you look good!" Thanks, I know I needed to lose weight before but those three words are a surefire way to make me feel like you aren't paying attention to *how* I've lost the weight.
24. But I love it when people: Ask thoughtful questions or listen without judgment. Sometimes I just need a listener.
25. My favorite motto, scripture, quote that gets me through tough times is:I do hard things. This is something my mom often told me when I struggled to find a job. Every day I say it to myself. Yes, this is hard, maybe the hardest thing I've ever done. I can do it though because I do hard things.
26. When someone is diagnosed I’d like to tell them: Educate yourself. Find the best doctors you can. Speak up. Take a deep breath. The worst may happen for you but it will be OK.
27. Something that has surprised me about living with an illness is: the loss of control. I now feel like my body isn't mine. I'm just a visitor.
28. The nicest thing someone did for me when I wasn’t feeling well was: Call and tell me a story. Ask me for advice. When I'm miserable, I feel like it's the best gift ever to be reminded that I'm valued and important.
29. The fact that you read this list makes me feel: loved and understood.
1. The illness I live with is: Gastroparesis and moderate probable Colonic Inertia
2. I was diagnosed in November 2011 just having turned 26.
3. But I had symptoms since:July 2011 thank God for good doctors
4. The biggest adjustment I’ve had to make is :Finding ways to be social without food. Food is everywhere!.
5. Most people assume that I miss food. Not so. I have not been truly hungry in 18 months..
6. The hardest part about mornings are: The nausea. It overwhelms me and it takes a lot of energy to push past it and get out of bed.
7. My favorite medical TV show is: It was ER. Then House. If anybody knows of a real life House please let me know! I liked Grey's Anatomy a lot more in the early years than I do now, still watch that too though
8. A gadget I couldn’t live without is: My Ipod. Music is my happy place. Always has been, but has become critical to maintaining my sanity since getting sick. After that, my laptop or tablet are great for staying in touch with family and friends who are spread out all over the place.
9. The hardest part about nights is Right now, it's being hooked up to my TPN. I'm on it 12 hours a day now. Either 5P-5A on weekdays, or 7P-7A on weekends. I have to get up at least twice to pee. It's about to get more annoying since I'm chronically clinically dehydrated and am finally going to let them add more sterile water to my bags. The dietitian will be happy since she's been suggesting it the last couple of weeks.
10. Each day I take Nine pills, two inhalers and a nasal spray. With the arrival of my PICC I now get IV zofran twice a day. I'm on a long course of steriods right now too so they're in the mix.
11. Regarding alternative treatments Fine by me.
12. If I had to choose between an invisible illness or visible I would choose:Since I already used a chair before GP joined the party, I don't get a choice. I have found myself wishing that I didn't have CP a lot lately. Generally it is easier to live with CP, if only because the chair does a lot of the explaining for me. I am still really bad at making why I don't/can't eat make sense to people.
13. Regarding working and career: My work is extremely important to me. It's become a great distraction as my health has gotten shakier. My coworkers are a great support. I will do everything in my power to continue working.
14. People would be surprised to know: That I have seriously considered medical school several times. If I was working with a full compliment of body parts, I totally would've gone. I think my life has taught me so much that would benefit other people. I really like the puzzle-solving aspect of medicine too.
15. The hardest thing to accept about my new reality has been: The unpredictability. I just get used to a progression, the idea of needing the next more invasive surgery or intervention and it all changes again. I think of TPN as the last resort so some of the living on shifting sand feeling has gotten better. The next thing is death, and I'll be damned if I'll let that happen!
16. Something I never thought I could do with my illness that I did was: I have made some great new friends through the online support group. Even though we will likely never meet in real life, that group has become like family to me. I hate having GP, but without it, I would never have met some truly incredible people.
17. The commercials about my illness: Don't exist Even though GP is *not* a rare disease, there is very little awareness about it. The lack of awareness is particularly evident and problematic in the medical community. Case in point, the last time I saw my primary doctor, she asked why we were considering nutrition support. In her eyes I looked great!
18. Something I really miss doing since I was diagnosed is: Taking advantage of the great things my city has to offer. Before GP, I was always going somewhere or doing something on weekends. Now even managing to shower every day is a stretch
19. It was really hard to have to give up My conception of health. I always considered myself a healthy person. I had a disability, yes, but that didn't make me sick. Now I am very sick and have a disability.
20. A new hobby I have taken up since my diagnosis is: Blogging. It is very therapeutic for me to come here and express myself in a much more articulate way than I could manage when I speak.
21. If I could have one day of feeling normal again I would: Eat at my favorite restaurant in the city. Then I'd go spend the day with friends at the museums or at the movies. Then I'd eat at another restaurant Then come home and eat some more!
22. My illness has taught me: Never to take anything for granted. Eighteen months ago, I had no idea how radically life would change for me. I should've appreciated my life before a whole lot more than I did.
23. Want to know a secret? One thing people say that gets under my skin is: "But you look good!" Thanks, I know I needed to lose weight before but those three words are a surefire way to make me feel like you aren't paying attention to *how* I've lost the weight.
24. But I love it when people: Ask thoughtful questions or listen without judgment. Sometimes I just need a listener.
25. My favorite motto, scripture, quote that gets me through tough times is:I do hard things. This is something my mom often told me when I struggled to find a job. Every day I say it to myself. Yes, this is hard, maybe the hardest thing I've ever done. I can do it though because I do hard things.
26. When someone is diagnosed I’d like to tell them: Educate yourself. Find the best doctors you can. Speak up. Take a deep breath. The worst may happen for you but it will be OK.
27. Something that has surprised me about living with an illness is: the loss of control. I now feel like my body isn't mine. I'm just a visitor.
28. The nicest thing someone did for me when I wasn’t feeling well was: Call and tell me a story. Ask me for advice. When I'm miserable, I feel like it's the best gift ever to be reminded that I'm valued and important.
29. The fact that you read this list makes me feel: loved and understood.
Wednesday, January 16, 2013
The Thrill of Accomplishment
Most days I'm ambivalent about having CP. It makes life hard, but I've nerver known any different. Besides, everyone has a hard life in one way or another. I don't have the market corned on hardship by any means.
Today I am grateful for CP. It gives me the chance to be immensley proud of myself multiple times a week. I get to feel the thrill of accomplishment when I manage to do something I either thought was impossible or that I had thought too hard to keep trying. The moments of pure joy are found in unlikely places. The come from doing things most would consider mundane. When I successfully fish my glasses out from behind my bed, I have a small party. When I finally master making peanut butter and jelly with one hand, there is a victory parade. When I am able to make my bed, including the bottom sheet, I shout it from the rooftops. I don't care that it took an hour and three brooms to extricate my glasses, or that there's peanut all over my kitchen and myself. The point is I did it by myself.
Today I got to experience this feeling three times in the space of an hour. All I did was take a shower. This was my first independant shower using a cool new bath chair that my mad-inventor dad built. It uses an air compressor and a piston to magically get my legs over the edge of my bathtub and an air bag to raise the seat up high enough. It is awesome. I've been crunched for time to actually use it between working full time and being tethered to TPN for 18 hours a day. Today, I had some free time at lunch and have been craving a real shower. I went for it. It was glorious. I transfered to the seat, pushed myself back, clicked my seatbelt and flipped the switch that slowly drew me over the middle of the tub.I flipped the second switch that slowly inflated the airbag under the seat so that when I used my body to turn the seat, my feet would clear the edge of the tub. Then I donned the plastic sleeve that protects my PICC line site, and went to town. When I was done, I reversed the process, feeling as though I had stuck the landing in an Olympic vault as my feet lightly brushed the floor.
So thank you, broken brain for making me feel like a little kid again.
Today I am grateful for CP. It gives me the chance to be immensley proud of myself multiple times a week. I get to feel the thrill of accomplishment when I manage to do something I either thought was impossible or that I had thought too hard to keep trying. The moments of pure joy are found in unlikely places. The come from doing things most would consider mundane. When I successfully fish my glasses out from behind my bed, I have a small party. When I finally master making peanut butter and jelly with one hand, there is a victory parade. When I am able to make my bed, including the bottom sheet, I shout it from the rooftops. I don't care that it took an hour and three brooms to extricate my glasses, or that there's peanut all over my kitchen and myself. The point is I did it by myself.
Today I got to experience this feeling three times in the space of an hour. All I did was take a shower. This was my first independant shower using a cool new bath chair that my mad-inventor dad built. It uses an air compressor and a piston to magically get my legs over the edge of my bathtub and an air bag to raise the seat up high enough. It is awesome. I've been crunched for time to actually use it between working full time and being tethered to TPN for 18 hours a day. Today, I had some free time at lunch and have been craving a real shower. I went for it. It was glorious. I transfered to the seat, pushed myself back, clicked my seatbelt and flipped the switch that slowly drew me over the middle of the tub.I flipped the second switch that slowly inflated the airbag under the seat so that when I used my body to turn the seat, my feet would clear the edge of the tub. Then I donned the plastic sleeve that protects my PICC line site, and went to town. When I was done, I reversed the process, feeling as though I had stuck the landing in an Olympic vault as my feet lightly brushed the floor.
So thank you, broken brain for making me feel like a little kid again.
Friday, November 2, 2012
In Which The Other Shoe Drops and I Have "The Talk
OK, remember how I said I was taking solace in the fact that supportive measures for nutrition have never come up? Yeah, that was nice while it lasted.
Today I saw the wonderful GI who diagnosed my GP.. I hadn't seen her in nearly a year . She has kept up pretty well. though with the rest of my team. I could tell by the way she looked at me that she was shocked at the weight loss. I told her that the pacer had worked really really well for the first two weeks. In the last four though, I've lost ground. To the point that I'm back to liquids, and my best days are 700ish calorie days. I told her that, and she said,"You can't do that." Uh, OK clearly I can't anymore. I have been having more and more trouble doing simple things like transfering out of the shower. In the last two months, I have had four or five instances where it has taken me from close to hour to nearly two hours to make the move between my bath chair and my wheelchair. I get light-headed and am weak when this happens. Fun times! We're talking six inches here people, not the Grand Canyon!
After I told her that, she got really quiet for a minute and the look on her face told me she was trying to either make or articulate a difficult choice. What came next were the words I've kept buried in the back of my mind for the last 18 months. I think as my idea of what worst-case scenario could be.
"Did Dr. B. or Motility Specialist. ever talk to you about gastronomy tubes?" (This will always and forever be known as a g-tube.)
"No."
"I think that might be your next step." She proceeded to explain what I knew. A g-tube is a surgically placed tube that would allow a nutritonally complete formula to be fed directly into my stomach. I think there should be a "j" component where the feed goes to the small intestine, skipping the stomach entirely. She said it would be used at night mainly if we go ahead. She was hopeful that supplementing my nutrition this way would help improve my strength and help me begin to move forward. In the meantime, we made some changes medication changes to see if that helps.
So, my worst case scenario is moving closer day-by day. There are definte pros and cons, but they are too many to relate.
Here goes nothing... She is going to get with Dr. B. and make a plan.As long as I feel better, I'd go to a shaman.
Today I saw the wonderful GI who diagnosed my GP.. I hadn't seen her in nearly a year . She has kept up pretty well. though with the rest of my team. I could tell by the way she looked at me that she was shocked at the weight loss. I told her that the pacer had worked really really well for the first two weeks. In the last four though, I've lost ground. To the point that I'm back to liquids, and my best days are 700ish calorie days. I told her that, and she said,"You can't do that." Uh, OK clearly I can't anymore. I have been having more and more trouble doing simple things like transfering out of the shower. In the last two months, I have had four or five instances where it has taken me from close to hour to nearly two hours to make the move between my bath chair and my wheelchair. I get light-headed and am weak when this happens. Fun times! We're talking six inches here people, not the Grand Canyon!
After I told her that, she got really quiet for a minute and the look on her face told me she was trying to either make or articulate a difficult choice. What came next were the words I've kept buried in the back of my mind for the last 18 months. I think as my idea of what worst-case scenario could be.
"Did Dr. B. or Motility Specialist. ever talk to you about gastronomy tubes?" (This will always and forever be known as a g-tube.)
"No."
"I think that might be your next step." She proceeded to explain what I knew. A g-tube is a surgically placed tube that would allow a nutritonally complete formula to be fed directly into my stomach. I think there should be a "j" component where the feed goes to the small intestine, skipping the stomach entirely. She said it would be used at night mainly if we go ahead. She was hopeful that supplementing my nutrition this way would help improve my strength and help me begin to move forward. In the meantime, we made some changes medication changes to see if that helps.
So, my worst case scenario is moving closer day-by day. There are definte pros and cons, but they are too many to relate.
Here goes nothing... She is going to get with Dr. B. and make a plan.As long as I feel better, I'd go to a shaman.
Wednesday, May 2, 2012
Catching Up: Radioactive Eggs Take Two
I'm still alive, I swear! A lot has happened in my little corner of Sick Girl Land as you'll soon see. Over the next week or so, I'll be catching you up. For now, jump into your time machines with me and travel back to March 26th and 27th. We find our intrepid heroine about to take on the evil radioactive eggs once more....
I got to Big Academic Medical Center very early on the morning of my second gastric emptying scan. I checked in and waited for a bit. Then a nurse called me back. She asked if I'd had anything to eat or drink yet that day (I hadn't, as instructed) and if I was allergic to eggs (I'm not, thank God.The alternative food for the scan is usually oatmeal,blech.) This time, I needed blood drawn beforehand, so we got that taken care of. The assumption of most of the medical world when it comes to gastroparesis is gastroparesisis equals diabetes.Not so for me, but I submitted to the blood draw peacefully. After that, the nurse showed me the way to the nuclear medicine suite where the scan would be conducted.
A radiology resident came out of his hidey hole and we chatted about my history and diagnosis. He crept back where he came from just in time for the door behind me to open and for a tech to stick hios head out to ask what kind of jelly I wanted on my sandwich. Uh, JELLY? Whose bright idea was it to put jelly with scrambled eggs. Nasty crap. When the guy wouldn't take "None!" for an answer, I acquiesced and asked for grape. Soon, the tech brought me his magnificent creation. It was then that I saw the signs on the door through which he'd just come. "Staff must wear protective gear at ALL times" read one sign. Several florescent green and red bio hazard symbols were plastered to the door as well. I was supposed to eat something that came from there? Bring it on!
I refused to even acknowledge what I was eating and downed two thirds of the lovely sandwich. I then was transferred to the scanner table and put in my ear buds and closed my eyes. Joshua Radin's soothing voice took me away and the first 90 minutes of the scan sped by.
I was transferred back to my chair for 20 minutes while we waited for the two hour mark. At two hours. I was scanned again and then put back in my chair, this time to wait it out until the four-hour mark. I was still not allowed to eat or drink. I took my Kindle and my phone and hung out in the waiting room for about an hour and a half. Fun times! At four hours, I was scanned again and then left to meet a friend.
Fast forward three weeks. My motility specialist called to tell me the results. She said at two hours my emptying time was nearly normal. I started to think she was going to refute the gastroparesiss diagnosis and that I'd be back to square one in terms of trying to figure out what was going on. Her next sentence put to rest any of that nonsense. "However, at four hours the scan was highly abnormal." OK, good! My answer wasn't changing. I could live with that.
Stay tuned for tales of roving MRIs, excellent doctors and a hospital stay.
I got to Big Academic Medical Center very early on the morning of my second gastric emptying scan. I checked in and waited for a bit. Then a nurse called me back. She asked if I'd had anything to eat or drink yet that day (I hadn't, as instructed) and if I was allergic to eggs (I'm not, thank God.The alternative food for the scan is usually oatmeal,blech.) This time, I needed blood drawn beforehand, so we got that taken care of. The assumption of most of the medical world when it comes to gastroparesis is gastroparesisis equals diabetes.Not so for me, but I submitted to the blood draw peacefully. After that, the nurse showed me the way to the nuclear medicine suite where the scan would be conducted.
A radiology resident came out of his hidey hole and we chatted about my history and diagnosis. He crept back where he came from just in time for the door behind me to open and for a tech to stick hios head out to ask what kind of jelly I wanted on my sandwich. Uh, JELLY? Whose bright idea was it to put jelly with scrambled eggs. Nasty crap. When the guy wouldn't take "None!" for an answer, I acquiesced and asked for grape. Soon, the tech brought me his magnificent creation. It was then that I saw the signs on the door through which he'd just come. "Staff must wear protective gear at ALL times" read one sign. Several florescent green and red bio hazard symbols were plastered to the door as well. I was supposed to eat something that came from there? Bring it on!
I refused to even acknowledge what I was eating and downed two thirds of the lovely sandwich. I then was transferred to the scanner table and put in my ear buds and closed my eyes. Joshua Radin's soothing voice took me away and the first 90 minutes of the scan sped by.
I was transferred back to my chair for 20 minutes while we waited for the two hour mark. At two hours. I was scanned again and then put back in my chair, this time to wait it out until the four-hour mark. I was still not allowed to eat or drink. I took my Kindle and my phone and hung out in the waiting room for about an hour and a half. Fun times! At four hours, I was scanned again and then left to meet a friend.
Fast forward three weeks. My motility specialist called to tell me the results. She said at two hours my emptying time was nearly normal. I started to think she was going to refute the gastroparesiss diagnosis and that I'd be back to square one in terms of trying to figure out what was going on. Her next sentence put to rest any of that nonsense. "However, at four hours the scan was highly abnormal." OK, good! My answer wasn't changing. I could live with that.
Stay tuned for tales of roving MRIs, excellent doctors and a hospital stay.
Saturday, March 10, 2012
Suffering?
I don't like to think of myself as someone who suffers. I live with the challenges of life with CP. I manage my asthma, and sometimes my depression, when needed. Sure, there are days when I want a break from my chair, want to be able to run, or even just stand for five minutes comfortably. Those are the days when I remind my self that. all things considered I'm pretty lucky. I'm able to care for myself both physically and financially. I do not have seizures or any cognitive issues at all. Other might look at my life and think that because I use a chair, I must suffer. In fact I even had someone look at me once and say "I pray to God every day not to to end up like that!" I'm pretty tough, but that comment brought me to tears. Truth is, I don't suffer.I might struggle and fight a lot of the time but I have a pretty good life. Or I did... Enter gastroparesis.
I know I've written a lot about living with this new companion. I have tried to be upbeat about it. The truth about this disorder though is it makes people suffer. It makes me suffer. The constant nausea, lack of appetite and even the lack of the sensation of hunger, are awful. In order to function I force a limited number of foods down. I rely on my Zofran as a crutch to make it through the day. It only works to turn the volume on the nausea down from a 7-8 to a 5-6, It only works some of the time, and even then it only works for two hours of the six it's supposed to. These symptoms wear on my emotions as well,
On the other hand, I know I'm still lucky. I have never thrown up. I can still eat by mouth, even if it's limited.I have never had an ER visit for this. I've still got some weight I could stand to lose. All of those things work in my favor.
Work is a challenge. A social life? Forget about it. I am so tired after work every night that I can only muster the energy to shower about three times a week. Weekends are a time when I eat much less than I can afford to during the week.
This week, I had an appointment with Dr. Lungs. All's quiet on the asthma front for once. Near the end of my time with him, I started venting about how awful I felt otherwise. He was attentive but I realized somewhere mid rant that he was not the one I needed to talk to.
After the appointment, I called my GI's office and asked them to have her call me back. A couple of hours later, she did. I told her the Zofran wasn't working, but we agreed that because I need to work there really wasn't anything else to try because anything else there is makes me too out of it to function I was surprised by what I said next. I asked her how other people don't go crazy. I told her that I was swimming in my clothes. She asked when I was seeing the next doctor in the string, the motility specialist. When I told her I was seeing her in April, she got very upset. She got off the phone with me, called the motility and called me right back with news that I would be seen Wednesday or Thursday of this week.
I was so happy I told her that I loved her and that she'd made my day. If I do as well with the stimulator as I hope, she may even have saved my life. At least my quality of life.
Time will tell.
I know I've written a lot about living with this new companion. I have tried to be upbeat about it. The truth about this disorder though is it makes people suffer. It makes me suffer. The constant nausea, lack of appetite and even the lack of the sensation of hunger, are awful. In order to function I force a limited number of foods down. I rely on my Zofran as a crutch to make it through the day. It only works to turn the volume on the nausea down from a 7-8 to a 5-6, It only works some of the time, and even then it only works for two hours of the six it's supposed to. These symptoms wear on my emotions as well,
On the other hand, I know I'm still lucky. I have never thrown up. I can still eat by mouth, even if it's limited.I have never had an ER visit for this. I've still got some weight I could stand to lose. All of those things work in my favor.
Work is a challenge. A social life? Forget about it. I am so tired after work every night that I can only muster the energy to shower about three times a week. Weekends are a time when I eat much less than I can afford to during the week.
This week, I had an appointment with Dr. Lungs. All's quiet on the asthma front for once. Near the end of my time with him, I started venting about how awful I felt otherwise. He was attentive but I realized somewhere mid rant that he was not the one I needed to talk to.
After the appointment, I called my GI's office and asked them to have her call me back. A couple of hours later, she did. I told her the Zofran wasn't working, but we agreed that because I need to work there really wasn't anything else to try because anything else there is makes me too out of it to function I was surprised by what I said next. I asked her how other people don't go crazy. I told her that I was swimming in my clothes. She asked when I was seeing the next doctor in the string, the motility specialist. When I told her I was seeing her in April, she got very upset. She got off the phone with me, called the motility and called me right back with news that I would be seen Wednesday or Thursday of this week.
I was so happy I told her that I loved her and that she'd made my day. If I do as well with the stimulator as I hope, she may even have saved my life. At least my quality of life.
Time will tell.
Sunday, January 8, 2012
My Bucket List Inspired by Zach Anner.
All my life I've been on the lookout for someone that looks like me on TV. I have been drawn to shows and movies featuring actors or storylines about disability. I remember being really excited when Mr. Mcfeely's grandaughter was a little girl who had spina bifida on Mister Roger's Neighborhood. I was six. I have never seen anybody with cerebral.palsy in a TV show, with whom I could relate. Not really. There have bee a few over the years like hilarious comedian Josh Blue, or acteress Geri Jewell, who I love because they seem so very accepting of their disabilities. The abilty to laugh at myself is something I do prettywell. These two are masters at that.
Then last summer, the world met Zach Anner. He competed in a reality show on OWN where the prize was a TV show produced by the network. Zach beat out eight other contestantants (he tied with another person) and won his own show! He is smart, articulate and fantastically funny. He also has CP. He looks almost exactly like me in the way he carries his body. His feet rarely meet the footrests of his chair. He often sits cock-eyed. His eyes are even crossed. Awesome.
His show is a travel show. Each episode features Zach exploring a different city. So far he's been to New York, Seattle Las Angles and Las Vegas. Each show kind of follows a pattern. He does something to explore local culture, a food-centric thing, and an andventure or sporty thing. He went sky diving in Vegas! Let me remind you, he uses a wheelchair. And he went skydiving. Indoors, but still. I NEED to get to Vegas. Who wants to come with me?
Then last summer, the world met Zach Anner. He competed in a reality show on OWN where the prize was a TV show produced by the network. Zach beat out eight other contestantants (he tied with another person) and won his own show! He is smart, articulate and fantastically funny. He also has CP. He looks almost exactly like me in the way he carries his body. His feet rarely meet the footrests of his chair. He often sits cock-eyed. His eyes are even crossed. Awesome.
His show is a travel show. Each episode features Zach exploring a different city. So far he's been to New York, Seattle Las Angles and Las Vegas. Each show kind of follows a pattern. He does something to explore local culture, a food-centric thing, and an andventure or sporty thing. He went sky diving in Vegas! Let me remind you, he uses a wheelchair. And he went skydiving. Indoors, but still. I NEED to get to Vegas. Who wants to come with me?
Sunday, January 1, 2012
A Different Kind of Different
Happy New Year all! I hope you all had a lovely first day of 2012 and are sufficiently recovered from whatever level of celebration you indulged in last night. I rang in the new year from my bed, asleep. This week has been just awful as far as GP symptoms. Constant nausea and pain. So I went to bed before the magical midnight hour. Anyway, this post is not really about New Years Eve. It's about difference.
I have been different my whole life. Growing up with CP I never fit in anywhere. I could never fully participate in the activities my peers enjoyed, I had some friends who very athletic. I obviously was not. Though I'm not sure if that was related to my disability or genetics, my whole family is not very athletic. We are theatre people. My friends and I had other things in common, but I rarely hung out with anyone outside of school. The majority of the houses in the small town I lived in were not very friendly for someone with mobility problems. This made my childhood and adolescence a rather lonely time. I desperately wanted friends who "got" me. I could not really find anyone like that in my peer group until college. I got along much better with adults. That makes sense when you consider that my only extra circular activity as a child consisted of the few hours a week I spent in OT and PT, I was surrounded by adults all of the time. I was too different from my peers to truly belong among them, but I couldn't relate to the adults in my life appropriately either. I was in limbo.
Then I went away to school. At 14, I asked my parents to ask my school district to send me to a residential school for kids with disabilities in my state. Yes, you read that right. I asked to go away. I remember the main thing I wished for when I spoke to my parents was "not to be the only one" anymore. I wanted to be somewhere where there were kids who were struggling in the same ways I was. They agreed. I got to school, but I still never felt like I belonged. There were people there with all kinds of disabilities. I had friends with all kinds of challenges, but I only met two other students whose stories were similar enough to mine that we grew close. Even in this environment I gravitated toward the adults.
As difficult and lonely as these years were, they taught me to accept that I would always be different. That things were never going to be as easy for me as they seemed to be for others. I developed various strategies for handling the probing questions and penetrating stares of strangers. I finally had living with a disability pretty well under control.
Then I was diagnosed with gastroparesis. This is a whole other ballgame. Not many people can relate to using a wheelchair, living with spasticity or blindness. Everyone needs to eat though. It is hard to be dealing with a disorder whose symptoms are largely hidden but that are so debilitating. I now must learn to be a different kind of different. I am not sure if I have it in me to do the 20+ years worth of work to accept this new facet of my identity.
I have been different my whole life. Growing up with CP I never fit in anywhere. I could never fully participate in the activities my peers enjoyed, I had some friends who very athletic. I obviously was not. Though I'm not sure if that was related to my disability or genetics, my whole family is not very athletic. We are theatre people. My friends and I had other things in common, but I rarely hung out with anyone outside of school. The majority of the houses in the small town I lived in were not very friendly for someone with mobility problems. This made my childhood and adolescence a rather lonely time. I desperately wanted friends who "got" me. I could not really find anyone like that in my peer group until college. I got along much better with adults. That makes sense when you consider that my only extra circular activity as a child consisted of the few hours a week I spent in OT and PT, I was surrounded by adults all of the time. I was too different from my peers to truly belong among them, but I couldn't relate to the adults in my life appropriately either. I was in limbo.
Then I went away to school. At 14, I asked my parents to ask my school district to send me to a residential school for kids with disabilities in my state. Yes, you read that right. I asked to go away. I remember the main thing I wished for when I spoke to my parents was "not to be the only one" anymore. I wanted to be somewhere where there were kids who were struggling in the same ways I was. They agreed. I got to school, but I still never felt like I belonged. There were people there with all kinds of disabilities. I had friends with all kinds of challenges, but I only met two other students whose stories were similar enough to mine that we grew close. Even in this environment I gravitated toward the adults.
As difficult and lonely as these years were, they taught me to accept that I would always be different. That things were never going to be as easy for me as they seemed to be for others. I developed various strategies for handling the probing questions and penetrating stares of strangers. I finally had living with a disability pretty well under control.
Then I was diagnosed with gastroparesis. This is a whole other ballgame. Not many people can relate to using a wheelchair, living with spasticity or blindness. Everyone needs to eat though. It is hard to be dealing with a disorder whose symptoms are largely hidden but that are so debilitating. I now must learn to be a different kind of different. I am not sure if I have it in me to do the 20+ years worth of work to accept this new facet of my identity.
Wednesday, December 28, 2011
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.
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.
Thursday, December 8, 2011
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.
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.
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