Not much has changed - each day is like shampoo:lather, rinse, repeat. So there is nothing big and exciting to write about. So instead I am going to write a few little random bits and pieces that do not necessarily go together except that they all came tumbling from my mind. This could get scary. :)
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Teaching Tidbit
When a new student transferred to our school district with an IEP in place we had to accept that IEP and place the child accordingly and then we had 9 weeks to call a new IEP meeting to discuss what we felt was appropriate placement with appropriate goals. Nigel was a transfer student who had just arrived in the classroom, coming from a district where you received services even if you were just considered at risk and were not delayed. They had more money than we did. It was lunch time and we were pouring milk into cups. He looked with pure disgust at the cup placed before him and then spoke up. "Excuse me, but at home I have a nipple." (meaning that at the age of 4 1/3 he still drank from a bottle) The principal happened to be in the classroom and she immediately responded "Well at home I have a Marguerita. Life's tough kid."
Nigel also tried to do a "gangster" deal with one of our other students who was using a stander to stretch out his hamstring. He slid up next to him, eyes darting to make sure no one was watching and then whispered in a grovelly voice "Heyyy Samuel. Wanna get down??"

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Oasis in a Desert

I have mentioned before that I never get thirsty. This is a hard concept for people to understand because it is completely natural and innate for them to get thirsty. For me a sense of thirst is as foreign as a sense of sight is to an individual with blindness. I have figures out what it might be like from reading and from wanting more of a beverage that tastes good but other than that I have no idea. We have tried every low tech problem solving idea known to man and I must confess I have left a Hansel and Gretel trail of forgotten water bottles I was supposed to carry with me and drink from. We tried scheduled drinking every 3 hours, but I would be in the middle of something when the alarm went off and then never remember to drink. So finally after years we are doing a brain MRI focused on my hypothalamus to see if we can determine a cause for this lack of thirst. The dehydration is causing problems with my already damaged bladder and my already ill functioning blood pressure so we need a plan here, an oasis in the desert. Although an oasis in a dessert sounds pretty good too!

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Last weekend I decided that since it was summer it was time to paint my toe nails. This is like a circus side show act and I could easily charge admission for a crowd. I do it myself only because I can not trust anyone else not to bump my toe joints, which is a pain unlike anything other. It is like playing Twister with nailpolish and contorted feet. So I begin by propping myself on the floor with the necessary supplies. I also take extra muscle relaxing meds and pain meds. Then the contortion begins. It is like trying to paint the toe nails of a cat. My muscles do not cooperate, I end up with nailpolish in places I definitely was not aiming for, and my toes rest against each other in a very unhelpful manner. Finally about two hours later and half a bottle of nailpolish remover I am satisfactorily done and exhausted. I won't paint them again for a few months hopefully.

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Tummy Time

Next week I have an appointment with the PA at the GI office. I had requested to see the other doctor in the practice for follow up because I just could not communicate with the doctor I have been seeing - he even admitted more than once that he was not paying attention to me. The secretary - AKA gatekeeper- decided it would be too long to wait to see the other doctor so she settled on having me see the PA. I don't mind, I have seen the PA before and she actually listens to me and understands what I am saying. My problem is not swallowing right now, the problem is that my diet is limited to basic carbs otherwise I suffer severe stomach pain and nausea. Living off of breakfast cereal, tortilla bread, toast, melon, crackers, milk and occasionally cheese can't be providing me with all of the vitamins and stuff that I need. Its the unintentional vegetarian diet.

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Heat Hermit

Due to the fact that the Dysautonomia has taken a hammer to my internal thermostat, I have to be very careful with temperature regulation. In the winter I can not maintain my own body temperature and rely on heat, clothing, blankets, and hot drinks to keep warm. Winter is easier because I can always bundle up more. In summer I can only get so naked before breaking local laws. I have great trouble keeping hydrated, although I do supplement with popsicles. And I become a heat hermit. Any day that the temperature or heat index spikes around r over 90 I can not leave the house because I can not cool myself down enough and I become at risk not just of an autonomic crisis but also of heat stroke. This summer is off to a hot start and I have already been quarantined due to heat more than a few days. And right now we only have one air conditioner for the entire apartment, positoned in the living room. I can get another one added due to medical need but it is too late this year as it would not be added until September or October at this point. Next year I am starting the process in March. So we have an elaborate series of box fans conducting the cool air to the small bedroom turned computer room/tv room where on hot nights I sleep on the couch. When it is not roasting I cool my bedroom off by opening the sliding glass door until just before I go to bed. I close it, and the curtain, because the sun has an annoying habit of shining early in the morning, which wakes me and anyone who knows me knows that waking me that early in the morning is a dangerous thing to do.

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Happy 4th of July!!

I am totally stuck with "nothing worth writing about" block, but I want to put something up here. Thus you will be subject to the random sparks of my mind as it tries to kindle a fire to keep itself warm because it is once again below zero outside. Now I get that I live way above that Mason-Dixon line, but does Mother Nature need to keep rubbing my face in it and giving me a white wash? If we could get the windchill into a positive two digit number I would be her new bestest friend. I lost one of my wheelchair gloves in the vast black hole that is Walmart, which means I now have one pair so when my hands get soaking freezing cold and wet from the slush that no one gives a darn about doing anything with anymore I have no other gloves to change in to. I suppose I should shake the money tree extra hard and buy replacement gloves, but dang it - who would find and keep a single fingerless glove? And its not like it was brand new, it had been put through its paces for a while and was nicely broken in.
I finished the experimental dosage of massive antibiotics to see if we could eliminate an infectious cause for my daily fevers and so far, so good. I did manage to acquire a sinus infection while on a broad spectrum antibiotic, which amazes me but shouldn't as my immune system really does suck like that. And this time of year is like playing craps every time I go out because I am allergic to the flu shot and I rely on public transportation - oh what a bad combination that is, being unable to get the vaccine and then immersing myself in a mobile petri dish of horrors.
Speaking of the joys of the mobile petri dish, I had a woman who was using a motorized scooter sitting next to me on the bus and she felt some strange compulsion to tell me her life story. She also kept patting my arm. Then she looked at me expectantly like I was going to reveal the deep dark secret of how I became disabled and how hard life is for me. I just looked at her, smirked, told her "Yeah, I caught a bad case of dystonia" and pulled out my cell phone to play WordTwist. She visibly sagged in disappointment over the fact that I was not giving her at least an equally juicy story full of horrors and "poor me"s. Sorry lady, I had just done battle through Walmart, sans gloves, and I was in no mood to have a Hallmark moment, or a Mallox moment.
I think maybe this weekend I will finally take down the small Christmas tree that is still sitting on the craft table in my bedroom and put it away. After being hesitant to do much for the holidays this year, I am now too lazy to take all of the ornaments off of the little sucker and pack it up. It is oh so tempting to just cut out some hearts, stick them on, and make it a Valentine's Day tree, then repeat with Shamrocks for St. Patrick's Day, Eggs and flowers for Easter, etc. But eventually I do want my craft table back. It is also very tempting to just shove the entire thing in a box, ornaments and all, but I know that next December I would be very angry with myself for that little stunt. Sad thing is, I am not really ashamed of still having the Christmas tree up, as much as almost proud in a twisted sort of manner. :)
I will hopefully be back soon with more insightful, thoughtful or at least funny insights. Like the fact that the punk who decided he was done with his slice of pizza at Walmart and chucked it over the shelves from his aisle into mine where it landed dangerously close to me is lucky he can run faster than I can wheel or I would still be picking his DNA out of my tires. Or the fact that the people most likely to help you when you are in a wheelchair and can't reach something or drop something or get stuck in, say, 14 inches of snow are women of childbearing age. It brings out the mothering instinct. Men rarely help unless they have a woman with them that they want to appear especially chivalrous for, or I flat out ask them and they get a neat deer in the headlights look. Sometimes I like cornering a guy just to see that look when I ask for help. Its like I am asking for help getting dressed instead of reaching the milk.

Unlike the world's cutest now eight year old pictured above, I can only fall asleep sitting up on the rarest of occasions. In fact, tonight I can not sleep period. I feel like a character in a bad Dr. Seuss book on sleep.
"I can not got to sleep tonight
My sleeping thing is just not right.
I could not, would not in the bed
Not with a fancy pillow for my head
I could not, would not on the couch
That left me feeling like a grouch
I could not, would not on the floor
I can't get down there anymore
I could not, would not with my iPod
Not even after I politely asked God
I could not, would not with a guy
Well only cause none showed up for me to try
I could not, would not count the sheep
They went on strike with Little Bo Peep
I could not, would not with the prescription drugs
At maximum dosage I am not even buzzed
I just can not go to sleep tonight
And by now I am quite a fright
Please sleep let me try you out for a while
Insomnia is not my style!"

As if bad rhyming ala Dr. Seuss was not enough, you now get the priceless opportunity to read whatever comes floatng from the muck and the mire to the front of my addled brain and out my fingers. I probably should not have internet access when dealing with insomnia!


Randomimity

* I actually had to speak the phrase "Excuse me ma'am but could you please retrieve your dog from my leg" this week in the elevator. Apparently her dog did not have a banana in his pocket but was in fact very excited to see me and hopped right up on my foot rests and decided my leg made a hot afternoon date. I just thank God it was a miniature something and not a Great Dane!

* When picking up prescriptions at the pharmacy, the pharmacy tech sees me and automatically goes over to the spot for my last name and searches through it. We hit the motherload as he returned with a sack of meds. The sad part was when he asked me if ten sounded right for the number of prescriptions, not only did I have no idea if that was correct (God Bless Automatic Refills) but I also knew I would be back in a week or so for more.

*According to Social Security I am not considered Disabled. This sucks Ostrich Eggs and means we have to go through an appeal. It also makes me wonder how much more screwed up I need to be to qualify! I honestly think the problem is the lack of a cut and dry diagnosis. That and they are all could use some preparation H in a jumbo tub.

* While at the mall last week, I politely informed a man who kept stepping in front of me that I would not hesitate to run him over. He said I needed a horn, to which I replied he needed a rearview mirror to check before lane changes.

* I am such a total geek/nerd. With the iTunes gift cards I received for Christmas I have been downloading documentaries that I never get to see in a theater because I live in The Middle of Nowhere, Michigan. Just like I prefer nonfiction books to fiction books, I prefer documentaries to regular movies.

* I scared and confused the crap out of a small child while shopping at the mall. There was an item hanging from a high rack that I wanted and no one anywhere to be found willing to help me. However, there was a child about three or four years old staring at me intently from the child seat of a shopping cart. So I did my "Amazing Standing Cripple" act and unbuckled my feet, undid my seatbelt and held on to the rack while I stood up long enough to grab what I needed. When I looked over at the poor child she had a look of pure confusion and shock on her tiny features that in all honesty was hilarious to me. I want to hear how her mommy explained that one to her!

I adore words, finding in them an almost magical power that extends far beyond the representation of concept or emotion. There is a lyrical, musical, ballet dance to words and the sound and feel of the word is just as critical as the intent of the word. Discombobulated has long been one of my favorite words, ever since I first tasted its weight and tone as a small child. Nothing else quite captures the state of jumbled up, tangled, frazzled, out of my own control, not sure which way is up or down as being discombobulated. My reason for not writing anything in a long time is that I have been living in a perpetual state of discombobulation.

My dysautonomia has become significantly more active as the fall days turn colder, and I do not know if that is just a coincidence or if I am in for a long winter.I have been held hostage by my body all month thus far inside of the house, and I am getting very tired of spending my days on the couch or curled up in my bed. Tomorrow I plan on forcing my body to suck it up and deal with a short outing to Target as I am out of some of my medications and they don't deliver (I got spoiled by the old fashioned pharmacy that delivered in the smaller town I used to live in!). Emotionally I tap dance along the spectrum from anger to depression (more like mourning or grief for what I lost) to days of acceptance. I should have paid better attention during those dance lessons as a child as I keep getting the steps wrong and ending up all tangled and befuddled.

I can not believe that it is already time for me to need to get working on making my Christmas cards, and I don't even have my craft table officially set up in my bedroom. Thankfully this year's planned card is simple in design and should be an easy assembly. I had considered doing homemade Christmas gifts as well but that is so not happening this year. Maybe next year if I start in August I will have a prayer of getting done in time.

I have my next round of Botox injections scheduled for the day before Thanksgiving, and I am hopeful that this appointment is not cancelled (the first one for this round was cancelled as the doctor had to go out of town). It has been an unpleasant process to gradually regain the spasticity that was taken away by the first round of injections and I much prefer the range of motion and comfort that I had following the injections. I also see my neurologist on that day, and we have many details that need to be discussed including what symptom management will look like since it appears the search for a diagnosis has been surrendered and if this new back pain is progression of the dystonia and how I can stay hydrated to prevent the recurring bladder/kidney infections when I have absolutely no sense of thirst (thanks to the dysautonomia).

In a completely random note, it has already snowed here. Excuse me, but I don't remember placing an order for an early winter or cold weather. Thankfully the little snow that stuck melted quickly the next day. Snow sucks when you are in a wheelchair and the cold sucks when you can not regulate your body temperature. I love looking at the snow, but I hate having to go out in it when it is windchill negative freeze your breath. I still want to find the genius who thought that metal push rims would be a great idea for a wheelchair that would be used in a Northern state with frigid winters. It is like that scene in A Christmas Story when the kid gets his tongue stuck to the pole, only with my hands on the push rims. I had to buy a new, very warm winter coat as the coat from last year did not fit and matching hat, scarf, and gloves. Unfortunately, with my KAFOs, there are no winter boots that I have found that fit over them so I have to be very, very careful transferring in the winter. 

I will hopefully be back soon to write something more creative, more insightful, and more entertaining. I am writing this tonight as I try to lull my brain into a relaxed state during an annoying bout of insomnia. Therefore, I promise absolutely nothing in terms of comprehension or logic. :)

It has been a while since I wrote anything on here. I think part of it is just not "feeling" like writing, and part of it is not feeling like I have anything worth writing about. The holidays are very special for me, but they are also filled with memories of how bad things were last year, and with anniversaries of "lasts" starting in September and going through December. December 12 is the one year anniversary of the last time I walked independently, December 24 is the one year anniversary of when I received my first wheelchair (Merry Christmas!).

This post is going to be a bunch of short random notes and such, hence its title "Randomimity" - my word for an assortment of random and unrelated things that are put together, often the way my mind works leaping from one thing to another. Linear thinking is not my strength, as I tend to think more in the fashion of a thousand ping pong balls set loose simultaneously in my brain at the start of an idea.

I have been receiving packages in the mail from UPS and FedEx a lot recently as my Christmas shopping has been done online. Living in a small town and having limited access to transportation, amazon.com has been a blessing for Christmas gifts. However, apparently I need to call UPS and FedEx and ask them what visual cue they need beyond the large, traffic cone orange ramp directly in front of my apartment door to realize that perhaps just dropping the package on the ground beside the ramp and leaving (sometimes with a courtesy bang on the door) is not helpful. I either have to risk falling on my head trying to pick them up from my chair, or get out of my wheelchair and crawl in order to pick up the packages. The good news is that I am almost done with my Christmas shopping.

Those beautiful, colorful AFOs that are pictured in my header? Those have become expensive, colorful pieces of art for the past two weeks. Due to the fact that my feet go into a spastic toe point and rotation even when in the braces, I have developed two red, puffy, and calloused and cracking areas over bony deformities on my feet (the bones of my feet have shifted from the constant spasticity and abnormal positioning). The risk of severe pressure sores caused my neurologist's office to make the decision to cease wearing the braces until my feet heal and then we will problem solve a solution. I really hope those do not end up being $300 (my copay) pieces of art long term!!!

A few nights ago I went with my stepmom to a Christmas party through the Disabled American Veterans. It was a lot of fun, the food was great, and I did fairly well at the gift raffle too. Considering I never win anything other than the genetic lottery ;) I won a nice "smelly stuff" bath set and an electric griddle. Last time I tried to make pancakes I set of the smoke alarms in my apartment for well over 30 minutes because the frying pan smoked, and I could not climb and get to the smoke detector to turn it off or wave something in front of it. All of the neighbors knew that I burned pancakes. Humiliating when you have people you don't know asking you if you like your pancakes well done. :) So now I can try again with proper equipment. I also got to test my new wheelchair in some interesting conditions including gravel, muddy dirt, and grass up onto a curb. I was able to navigate all of it on my own and even got up onto the low curb without needing assistance or having to go backwards.

December 11 I have an appointment to see a specialist in progressive spastic paraparesis to obtain a second opinion at the request of my amazing neurologist. I am nervous because this journey has been so difficult with so many doctors being unable to figure out what is going on and some even falling back on the "you are female, it's all in your head" diagnosis. I am so desperate for a diagnosis, an answer, a name of this monster that it makes me nervous to get my hopes up and nervous that once again I will get an "I don't know". Then on December 15 I have pulmonary function testing because my lung function never did appear to return to normal from when I required oxygen inpatient last year, and I am having some shortness of breath with exertion and at night.

A few weeks ago I proved that a hot glue gun is aptly named and significantly burned my finger, causing two blisters (one the size of a quarter, one the size of a dime) and still healing skin now that appears like it will scar. Personally I blame Martha Stewart for making Americans like me who do not have any arts and craft abilities think that it is oh-so-easy to do anything with a hot glue gun, glitter, and supplies from a craft store. It's not. I am not that kind of creative. I may be able to rig up equipment for children, create sensory activities that are functional and fun, and build my own teaching tools, but I can not manage crafts that require hot glue and frills. I need to remember and respect my boundaries.

I will try again to write a normal entry soon, but I make no promises. :) But I am alive, relatively well (I caught some sort of funky virus that is enjoying messing with me, but so long as it does not bring the flu along as a party guest I can totally make do), and enjoying the holidays! Thank you for still choosing to be a part of this journey with me, even though it has more bumps than a mogul hill and more left turns than a NASCAR race.