A glitch in the system
Apparently this year there is going to be very little of the season that I adore called "Spring" and a great deal of the season that my body detests called "Summer". The dysautonomia leaves me rather like a reptile in that I can not adjust my body temperature very well, so when it is hot outside I am very prone to heat exhaustion. It would help if my body could make the effort to sweat, but by the time we get to that point I am already in trouble. While I also am miserable in extreme cold, I prefer winter over the heat of summer because you can always put on layers but you can only (legally) take off so many. Another huge issue that arises to the forefront this time of year is one that is virtually impossible for someone with a functioning brain to comprehend. I do my best to explain it, but it is as if I am from some weird other planet. I do not have the capacity, ability, brain signals, awareness to feel thirsty. I can and have easily gone 24 hours without drinking anything other than the sips of water required to take my medication. (On a side note, I also do not have the capacity, ability, brain signals, awareness to feel hunger or full like normal either. ) Obviously this poses a big problem because I am rather fond of my kidneys and they already take a beating from all of the chemicals they are asked to process from my medications, not to mention we know at least one has a cyst on it. Also, with my extremely low blood pressures being dehydrated is like playing on a tightrope blindfolded without a safety net - just a bad idea. To explain what I mean by not feeling thirsty, I never get a signal that my body requires liquids no matter how desperately it may indeed need them. When I do drink it is because I am forcing myself to do so or because a beverage tastes good. If my mouth is dry I chew gum or swish a small amount of water and swallow it and then have no need to drink more. To try to understand, imagine you have just eaten the largest meal of your life and are absolutely and unquestionably full. Now someone sets down a 7 layer chocolate cake in front of you and hands you a fork, telling you that now you must eat your dessert. You have no desire to eat that cake, your brain is not telling you to eat that cake but everyone else is telling you that you need to eat that cake. This is sort of what it is like for me to drink something - I feel no need to drink, because I feel no need I often end up feeling nauseous from drinking a full glass of something because my body does not recognize the need for the liquid, and I am content without touching it yet everyone is telling me I need to do it. I can't quite imagine what thirst feels like, but I do recognize that my brain is obviously malfunctioning and I think I understand the concept from reading and studying development. So we have tried numerous things to get me to drink. First there was the theory that I just needed to do it - the Nike approach "Just Do It". That worked as well as one would expect. Then there was the theory that what I needed to do was carry a water bottle everywhere with me and take a drink from it whenever I remembered. Here's a hint, if I don't feel thirsty do you think I remembered the water bottle let alone to drink from it? I left a trail of countless water bottles in my wake each with maybe three sips taken before I totally forgot. Now I am supposed to be on a 3 hour timed schedule. Every three hours, when I go to the bathroom (my neurogenic bladder requires timed elimination) I am then supposed to get myself something to drink and drink it. Any guesses on how well this is going? Some days I do really well, and other days I am lucky if I get 16oz in over the entire day. What is really bad is that I take Topomax, which comes with a big bold warning that it is imperative to drink while taking it because it is known to cause kidney stones. Oops. Thankfully so far my kidneys show no damage from a lifetime of abuse, and they keep chugging along. But how much longer can they take this? At my follow up MDA Clinic appointment this is an issue that I know we need to seriously address and problem solve because 1) I am constantly on the edge of significant dehydration, 2) this is not helping my low blood pressure, 3) I feel better when hydrated, 4) kidney stones would be bad, and 5) my kidneys are the only ones I have and I think they have been abused enough.
I should write another time about how weird it is to have an abnormal/absent sense of hunger and abnormal/absent sense of full and the joys that brings including frequently forgetting to eat until my blood sugar plummets. I don't do much better eating on a schedule than drinking on one most days. :P With that glitch you would think I would be skinny, but nope - I have my back up belly in case the dysphagia gets severe again (that's what I am calling it, so it seems purposeful instead of just weight gain from the inability to exercise anymore).
Etiquette Lessons???
Recently the Christopher and Dana Reeve Foundation conducted a survey of visitors to its website and web communities and published the results of the Top Ten Most Annoying Things for Wheelchair Users. This stirred up a lot of controversy, including debates over whether accessible stalls were reserved for individuals with disabilities or were fair game for anyone at any time and over whether van accessible spots should be saved for those with wheelchair vans who otherwise can not exit their vehicles. I got thinking about my own experiences, and I decided to make my very own list of Annoying Things About Being in a Wheelchair based on true life experiences. I think I may have done this before, but if so it is time for an update. :)
* I am not hearing impaired, but even if I was your yelling would only make you look like an idiot. - For some reason I have yet to figure out, people have some compulsion to yell at me because I am in a wheelchair as if because my legs do not work right I must also have trouble hearing. This one can be entertaining because I enjoy watching people make idiots out of themselves.
* Don't pity me, buy me a drink!- Save the pity for someone who wants it or needs it. My life is rich in all the ways that matter and I am abundantly blessed. Don't compare me to some standard that you feel is the definition of normal or "good". If you feel bad about the situation I am in, talk to me; get to know me, ask questions, learn that it is nothing worthy of pity and that I am just a person with hopes and dreams and good days and bad days like everyone else. Learn about my disability, learn about me - understand but do not feel sorry for me. I am too busy living most days to feel sorry for myself!
*Having a multitude of children is not a disability. - When there are normal bathroom stalls open for usage, it is rude to take and use the one accessible stall because you have a brood of small children. Being a parent is not a disability, it is a lifestyle choice. I can not choose to use one of the regular stalls if I wanted to and so am stuck while you allow each of your children a turn to try to go potty and to flush, often more than once because it is just SO COOL! By the time I get the message to my brain that I need to use the bathroom, I do not have time for you to negotiate a potty treaty that would make the Russians proud.
*If you stare long enough I just might do a trick!- I understand that you may not encounter someone in a wheelchair on a regular basis, let alone someone who uses the type of wheelchair that I do, let alone someone who wears capris and shorts that allow for my AFOS to be visible in summer months. I get that the natural instinct is to look. There is a difference between an inquisitive look and a gaping stare. Gaping stares from small children do not bother me; gaping stares from teenagers and adults are just rude. If you are curious ask a question, I don't mind explaining things and would rather educate you than be a side show freak on display for your entertainment.
*Do Not Pat Me On The Head. - Enough said.
* This is my dance space spaghetti arms!- Treat my wheelchair as your would treat a part of my body and do not lean against it, grab hold of it, or hang on to it in such a manner as to prevent me from moving. My wheelchair is not there to be a convenient place for you to hold on to on public transportation, for you to lean against, or for you to hold onto while engaged in conversation turning me into a virtual prisoner. Respect my space. Never start pushing my wheelchair without first asking and receiving my permission. I don't run around scooping up people who are walking and wheeling them around on my lap so lets be fair.
* Look at you standing there all Homo erectus! - Avoid the temptation to comment on how well I manage to maneuver in my wheelchair like this is some extremely astonishing accomplishment. I do not praise you for how well you stand and walk.
* By any other name would not smell so sweet - I hate being referred to as a wheelchair. I am no more a wheelchair than someone who is walking is a pair of sneakers or high heels or flip flops. I am not the tool I use to access the environment around me.
* I escaped out the back door- Please do not ask me where my parents are or who I am with at a store or other public location, or if someone forgot me there. I am fully capable of utilizing public transportation and also of managing to arrange for transportation. I am almost 29 years old, and while there are days I can not go anywhere, when I do get out I do not need a constant babysitter. I am still capable and coherent.
* Do you have a license for that thing?- yep, it came in a cracker jack box. If I run your toes over I get bonus points.
Medical Monday
Because we apparently missed a test to run on my brain and body, yesterday I had an EEG conducted prior to my appointment with the Dr. E to consult on the administration of Botox to my legs and feet. I drew the first lucky card of the day and became a guinea pig for someone just learning how to conduct EEGs. While she was very nice, I think I ended up with at least a dozen extra red pencil marks on my forehead and scalp as she measured and remeasured. Then she very slowly applied the leads using the theory that more adhesive and conductive goop is always better. Have I mentioned that I am allergic to all things adhesive? So we finally get approval from her supervisor and do the EEG testing. Results - my brain is using its wires according to plan. I would have been really upset had there been any signs of seizures or abnormalities considering that I am on a mega dose of Topomax (antiseizure drug) already for migraines, and another antizeizure drug that helps control muscle tone. As a result of the overzealous technician I had a delightful bulls eye on the middle of my forehead from her firmly and securely attaching a lead there. My hair was also glued down to my scalp, but luckily this was not my first go round with this test and so I had brought a hat. Washing my hair last night took about 20 minutes, a lot of scrubbing, and a lot of warm water to soak off the goop and the shreds of gauze still stuck to my head and be able to get my fingers through my hair let alone a hairbrush. It still itches today, so I think I may need to do a good scrub, round two this evening.
Then I had my consult appointment with Dr. E to determine whether I qualified to receive Botox treatment in my legs to hopefully assist in releasing some of the excess tone. However I once again drew the lucky card and was given a Medical Student to play with first. She was a cute little thing and I wondered if her mommy knew that she was playing doctor. I tried hard not to laugh when she sat down and eagerly asked for my medical history. Instead I politely informed her that she would need more that that one sheet of paper if she wanted my entire history and that perhaps we should agree upon the cliffs notes version. After going over a condensed medical history, and explaining to her about how I am impacted by Dysautonomia, I then became exhibit A. I had to take off my shoes and braces so she could see my distorted and contorted feet. She asked me the stupid questions of the day.
"Where did you buy those? (pointing to my AFOs)"
"Those are custom made AFOs made by X Orthopedics."
"So did you get to choose the design?"
"Yep. I figure people are going to stare anyway, so I might as well give them something interesting to stare at."
Uncomfortable silence on her part....crickets chirp.....I try hard not to laugh.
"So to put your shoes back on do you have to straighten your toes?".
"Um, I have tried that and the thing is, they just don't straighten. So even with shoes on my toes are curled like this."
"So can you straighten your feet?"
"I can pull them towards neutral for brief periods of time, but this rotated position is how the muscles pull them. I can only hold them for a very brief (seconds) period of time in any other position because it is like pulling against a gigantic, powerful, and tight rubber band."
"So it is more comfortable the way they are (turned under)?"
"No, it hurts like this. My ankles hurt, my toes hurt, my legs hurt. I would prefer they not do this, but the extreme tone in my legs pulls them into this position. Does this look comfortable?"
"oh. Um, not really."
When she did the part of the neuro-exam to check for sensitivity, I did not have the heart or the patience to correct her and explain that you poke with the pointy end of the safety pin, not the rounded end. I am curious how she got into medical school and am just really hoping that she just began her neuro round. I had to play nicely with her for an hour. Then the real doctor came in and it took all of a ten minute discussion to decide that yes, I would in his opinion benefit from Botox injections. He wants to target the muscle on the back of my leg, one behind my shin bone (I am trying not to imagine what is involved in accessing that one!) and one or two others. I will receive the injections at a yet to be made appointment once they receive approval from my insurance and then order the proper dosage and quantity of Botox. Dosing is not an exact science, especially since this is an off label usage for it (which I found strange since I am more familiar with using it in this manner through teaching kids with spastic cerebral palsy and other disorders that caused excessive tone than cosmetic reasons) so the first dosage is like any other medication really - the best calculation but each person reacts differently. It takes 2-3 weeks to see results and results peak at about 2 months. I do plan on warning the doctor when he does the injections that a recent episode of Mythbusters, which proved that women can tolerate more pain than men and redheads more than any others, also showed that cursing increases pain tolerance by 30% and I may take the liberty to test that theory myself - afterall he is going to be injecting a muscle BEHIND my shinbone!!
All added together I was at the neurology clinic for 3.5 hours - 1 of which I spent as Exhibit A for the medical student. Because of my "unusual" medical history and presentation I tend to be lucky and draw med students and interns and residents frequently. But all in all it is good news - the wiring works in my brain, and we have a new tool to try and reduce the spasticity/dystonia in my legs.
This Crazy Thing Called Life
* Photo from the last hike I took in September 2008, Prince William Forest.*
I had all sorts of plans for splendid entries on this journal (I still cringe at the word blog, I do not know why - maybe because it rhymes with "frog" and I have serious issues with amphibians?). Entries about the mixed emotions of sending off the blood work for the DNA testing for mitochondrial disease, entries about the amazing day that Mother's day turned out to be, entries about how when you are in a wheelchair you are all too often invisible both literally and figuratively and how this nearly turned me into a hood ornament for a Buick. But this crazy little thing called life kept stepping in and changing up my plans. So now I will be presenting My So Called Life, the abbreviated version.
* A week and a half ago I finally had the opportunity to access a hospital based laboratory to draw the single (Large!) tube of blood required to run the DNA testing for Mitochondrial Disease. The technician was very pleased with how "idiot proof" (her words) the self contained kit was, and I was pleased that I did not have to put that theory to the test at the scary, run by idiots local hospital. The downside of living in a very small town is that the medical care locally is sketchy at best - my primary doctor is a good 45 minute drive away, my specialists are about 90 minutes away. So now comes the waiting for results. I have mixed feelings as to what to pray for with the test results - the Dr is confident enough in his diagnosis that he has registered me to receive services through the MDA, and this diagnosis is the first thing that explains my entire medical history so a positive result would be a nice confirmation and would spare me the need to undergo a muscle biopsy. Given that I am on blood thinners, a muscle biopsy would be a bloddy mess and given that I have severe dysautonomia, a muscle biopsy which requires sedation would be a tightrope walk. Yet it just feels wrong to pray for test results to be positive for a disease that has no cure and no treatments. Not that any result is going to change what is going on inside of my body - either way there is a progressive disease process active and frequently making its presence known.
* On a much happier topic, Mother's Day was a day filled with priceless memories that I will treasure forever. My brother managed to orchestrate a series of surprises for just about everyone involved and had my two aunts come in to town to meet up with us for lunch. Neither my mom nor I knew anything - we thought we were going out to eat with my brother's family-, and my one aunt did not know the other was coming. I forgot to take my camera so I have no pictures but it was so much fun. Someone at the restaurant made the mistake of positioning the 9 of us front and center in the restaurant, obviously not comprehending the fact that any family gathering is a loud and rowdy affair. :) I spent half of the time at lunch at the "kiddie" end of the table with my nieces and nephew - well my nephew had his iPod in his one ear and was busy texting so the only time he spoke to me was to call me a tattle tale when I warned his mom that he has sabotaged her drink (I called him a teenager and he returned to sulking), and my older niece was constantly running from the table to check the score of the Tigers baseball game when she was not sulking because she stayed up too late the night before so really I visited with Little Bit. Little Bit is highly creative and can entertain herself for hours with just about any found object, so we were thrilled with crayons and a piece of paper but I did have some trouble following the ever changing rules of her games. Suspiciously, the rules changed every time she started to lose. :) I spent the other half of the time at lunch with the "Big People" at the adult end of the table where there was much laughter. After lunch, my one aunt came back to my mom's apartment to visit and we had a great time. I also had the honor of giving my mom a very special present that has a great deal of meaning to both of us.
* Being in a wheelchair is often like donning Harry Potter's Cloak of Invisibility. Suddenly people talk over your head, to the person with you, and about you but never to you. People will look everywhere but at you if you do talk to them, and they feel some bizarre compulsion to both shout and to revert to near baby talk. Because I obviously became hearing impaired and lost more than half my IQ points the minute I sat down in my wheelchair. What I failed to realize until the other day was that I am also literally invisible to many people. I was rolling in a parking lot at a large superstore, when all of a sudden a large vehicle whips out of a parking spot directly at me at about 30 mph. I used my emergency brakes (my hands) and my horn (screaming) to alert the driver and by the time we both came to a stop there was no more than an inch between my knees and her vehicle. I must admit that with enough adrenaline pumping through my body to pick up and toss her vehicle, I used a few words that I would not normally use in public and asked her whether or not she had seen me. She protested that I was in her blind spot, to which I answered that this is the reason as a driver you check your blind spot before whipping out of a parking spot and I questioned whether she should still be allowed to drive. I am now skitterish to even venture into parking lots and Lord help me crossing streets!!
* This week I got up, bathed, dressed, and out of the house four days in a row - Sunday for mother's day, Monday to pick up a prescription, Tuesday to go shopping for warmer weather clothes (last spring/summer I was still skinny from the dysphagia, this year definitely not so much), Wednesday to pick up the remainder of the prescription that they had not bothered to order in time for Monday and to return to my apartment (I had been staying with my mother for about 2 weeks). None of those days except Sunday and Wednesday involved getting up before noon, and those days I got up at about 10:00am. I was back home by 4:00pm every day. Yet my body is making me pay for so much activity. The dysautonomia is having a temper tantrum - I can not maintain my body temperature anywhere near normal, my blood pressure is running lower than my new normal, my GI motility is all messed up. The neurological disease is collecting its toll with headaches, severe muscle pain, and an increase in the dystonia and poor muscle control and balance. We are working out the terms of a peace treaty now, and I am hoping that by next week all will be forgiven especially since Monday I have a Dr appointment to evaluate my legs for Botox treatment as well as an EEG. I highly doubt the EEG will show anything because even if I were to have seizures I am on enough antiseizure medications that it should stop anything fast.
* I realize this post has been neither stunning nor brilliant, nor particularly entertaining. It has been long, if that counts for anything :) I shall work on the next entry and try to achieve brilliance, creativity, stunning humor, and perfect length. Hey, it is good to have goals :) Bonus points to you for making it to the end of this!!!
Blogging Against Disablism Day: More than a Mascot
In 2008 I was blessed with the opportunity to teach a class for students with multiple and severe disabilities in grades Kindergarten through second grade. Unfortunately I had to leave this teaching position at the end of October as my own disability progressed and I became seriously ill. However, in the two months that I taught this amazing class of children, I witnessed disablism in a public school that I had hoped was a thing of the past. At the beginning of the school year, the principal made it clear to me that it was a school tradition that I was to continue for each and every class and each and every grade level to visit my classroom to "see" my kids and ask whatever questions they might have- in front of my children! My children were to be used as a combination object lesson and in school field trip exhibit. I refused on the grounds that my children had the same dignity and respect as the other children in the building and were not attending school to be put on display. Also, my children may have significant disabilities but they have the capacity to understand when people are staring at them, when people are asking questions about them, and when people are talking about them and they deserve the right to not under go this experience. Every child is entitled to be treated as a child first and foremost. My students were more than cute little school mascots to be patted on the head in the hallways (I put a stop to that practice immediately as they were literally patting my children on the head!). We were a part of the school and a part of each grade we attended for class.
Inclusion was not about a general education teacher being so kind as to let us visit their classroom daily, it was about being educated alongside peers who are typically developing and being one of the class. You are not "doing me a favor" by allowing my student to be included in your classroom. Talk to my student, ask them questions, engage them, give them access to materials. Let me know prior to that day what you will be doing so I can adapt the lesson and have accessible materials for my student so they can learn along with their peers. Your attitude as the general education teacher will impact the attitudes of all of your students towards my students. You set a huge example. My students do not want tolerance, they want acceptance and appreciation of both their differences and their countless similarities to the other students.
On field day, I took my class out during the Kindergarten through second grade time and we participated in every single activity that I could modify or adapt. We were there to play alongside and with our peers. This shocked parent volunteers who felt that surely it was too dangerous for us to be running races with our children who use wheelchairs - although I am pretty sure that their boisterous laughter proved otherwise- and to be allowing our children to play T ball. Heck, this shocked teachers and administrators who informed me that in the past my class had always just come outside and watched the activities of field day but never participated. Just because my children used wheelchairs or had developmental disabilities did not mean that they did not thoroughly enjoy throwing a basketball at the hoop, tossing a football into the endzone, setting off air rockets, running races, playing with the giant parachute, or running our own version of the sack race as pictured above. We were not there to be school mascots, we were not there to watch, we were there to be included and I made sure that my children were not left out even as other teachers and administrators were left speechless.
My students attended school for the same reason every other student attended that school: to learn, to grow socially, and to be appreciated as an individual. Tradition may have put us on the outside looking in, in the backrow of every assembly where we could not see and could not hear but also could not be seen, and on the sidelines. Tradition may have viewed inclusion as a favor, as a time when my students went and sat in another classroom but were never a part of the action. Tradition may have encouraged the head patting school mascot view of my students. It was and is time that traditions change. My students are just as worthy of respect and dignity, as eager to learn, as social, as communicative, and as valuable as every other student. Every child is first a child, and should be treated as such. The labels used to categorize and separate children need to be left at the school door and education should focus on teaching all children to meet their needs and building a community where all are not tolerated but appreciated.
