It has been a while since I have posted anything. Most people hibernate in the winter, and living in the great frigid north I am not opposed to that tradition in any way. However, thanks to the failure of my body to regulate temperature, I also have to hibernate inside with the blessing of air conditioning on summer days that are too hot. This summer has been unusually hot and humid, meaning that my ability to get out and do anything has been greatly limited. Add in the total lack of access to transportation unless someone decides to take me somewhere and I am a house hermit. But not for long. So long as everything works out as it should, in just over a month I will be moving in with my mom to a two bedroom handicap accessible apartment that is in the bigger town with a fully accessible public transportation system that allows me to be independent and go wherever I want whenever I want. I will also be able to get my wheelchair into the bathroom (bonus!), and turn around in the bedroom (double bonus!!). It may seem like I am losing independence by moving back in with my mom, but I am gaining so much more independence by having access to freedom. I can go to coffee shops to read and hang out, to the store when I want to, to the YMCA to go swimming in their handicap accessible pool, and so much more. I can reach counters in the kitchen and prepare food. I can get in and out without struggling with a less than safe ramp. So prayers that this goes through without any difficulties would be greatly appreciated!!
In other news, I spent Wednesday hanging out with my favorite almost 6 year old, my niece Little Bit. I certainly will not be able to call her that for much longer as she is growing like a weed fed Miracle Gro! I am absolutely in love with her openness to the world and the fact that she is neither embarrassed nor afraid of my health changes. When she has a question, she asks it without hesitation. "Why do you wear gloves to push your wheelchair?" "Why are your legs like that when you walk?" "Does it hurt?" She climbed all over my wheelchair to explore it (again, she is fascinated with it) and even gave one of the family cats (who deserves kitty sainthood) a short ride. She helped push me up a steep ramp so I could watch her swim lessons and then ran with me as I coasted down the steep ramp afterward and laughed at how much fun it was to go so fast. She is so matter of fact and accepting and I love her view of life and the world. My Little Bit is growing up and recently lost two of her baby teeth. My brother, the tough paramedic, can not handle loose teeth and was totally freaked out by the process but Bit is very proud. She is very fair when it comes to gender, stating that the tooth fairy can be a boy or a girl, and she has no clue what he or she does with all those teeth. Apparently age 12 is when you officially become too cool for family, because my other niece and my nephew are both now too cool to spend time with family although I give my soon to be 14 yr old nephew a lot of credit. He had a friend over and very nicely introduced him to me, and then a few minutes later came out to the living room and asked if I wanted anything to eat or drink. Without any prompting from an adult! He really is a great kid/young man.
My Botox injections were postponed from Wednesday to two weeks from Wednesday due to some meeting that came up at the last minute that the doctor had to attend. I just want to get them over with (I am tired of considering just how much this might hurt) and see if I get any benefits from them. I am benefiting from the most recent changes in medication, although it needs to be adjusted somewhat again.
In stomach news, I am still stuck at pureed "stage 3" baby food level. I was so excited to find out I was able to eat a package of mini muffins without smooshing them with milk because they were so super soft, only to discover through a horrendous stomach ache and other GI issues that they were saturated with oil and I can not process that right now. I also had a horrid reaction to broccoli baby food mixed with mashed potatoes. I am getting somewhat used to the stomach pain, and have down the exact combination of meds to take when it hurts versus when I am severely nauseous versus when it both hurts and I am severely nauseous. Too bad my insurance company rations my Zofran (antinausea medicine) to 48 pills per month, even though I receive a generic. I am allergic to Phenergan, and Compazine proved useless the first go round with this so I am rather stuck. I also use Reglan up to 4 times per day. I need to see if my GI doctor has any ideas of other combos or meds we can try or add for nausea that my insurance might cover. I hate having to choose to feel sick many times because I need to save the meds for when I feel really, really sick.
Other than that, nothing much is happening. I will definitely try to update more often although I think there are maybe 2 people who even read this. Oh well, I write for myself as much as for anyone else although it would be nice to someday help someone else in my situation or a similar one out. I have been awake 4 whole hours which means it must be nap time! :)

Yesterday my stomach starred on the big screen in Endoscopy Suite number 2 as I had my second EGD ever completed. I could have nothing to eat or drink except two of my medications in the morning after midnight on Sunday, so I was rather pleased to have an arrival time of 9:20am. I became less pleased at that time slipped to 10:30am then 11:20am. I was finally taken into the Suite at 12:00pm. Part of that time was spent waiting in Pre-op where I was hooked up to an IV and given bright yellow socks to mark me as a fall risk - you know, in case I decided to get up and try to walk somewhere. :) So bonus points go to the anesthesiologist who managed to knock be out as I am not an easy person to sedate. The procedure went well, and I woke up easily afterwards. There was a little confusion over whether or not I have epilepsy (the answer is no) but it did not delay anything so all is good. The results from the scope itself show a small hiatal hernia - my stomach creeping its way up into my esophagus- and "mild" gastritis - inflammation of the stomach lining. The gastritis may be why it hurts to eat and be adding to the usual nausea that I have. No cause for swallowing difficulties was seen. However, dysphagia can be an effect of motility issues (we already know my stomach takes forever and a day to empty which is why I take Reglan every time I eat), as well as an associated symptom of Dysautonomia and other neurological disorders. So for now we wait to see if the biopsies show anything (I doubt it) and the plan is to continue with the pureed diet. We will do more testing if I lose a significant amount of weight, if my nutritional status becomes an issue, or if it lasts for a prolonged period of time. Considering the further testing is even more enjoyable than eating a camera for breakfast, I think I will make peace with purees.
One weird effect is that I have blisters in my nose where the oxygen tubing was, and blisters going down my throat, and the skin on my lips is bubbling and peeling off. The hospital unit says it is latex free so I have no idea what this is a reaction to, but benadryl seems to help. The nurse I spoke with said the high pressure oxygen from the tubing could cause irritation, but blisters in both nostrils and down my throat, and my lips to shed???? I was on oxygen for 8 days back in 2008 and never developed more than a dry nose.

Yesterday I had to go back to the "big" shopping mall in the "big" town where my mom lives because I needed to have more prescriptions transferred and the pharmacy I use is in a store attached to the mall. I use public transportation to get to and from the mall, so I can be independent in getting to not just the mall but anywhere in this town which is a nice bonus. The above picture is of my treat that I earned after having to spend over an hour negotiating between two pharmacies and one insurance company to get a prescription filled. Thankfully, butterscotch frozen yogurt with chocolate topping is not a solid food and does not cause me to choke so I can enjoy this delightful treat - and as a bonus the yogurt is fat free, low sugar and the chocolate simply does not count.
It has been hotter than should be legally allowed, so yesterday I decided to bust out the full summer gear and I wore a skirt with a tank top and sandals. My AFOs were left at home in the air conditioning. A very nice stranger complemented me on my purple camouflage skirt and I had to laugh. I had never thought of the pattern that way, but it is pretty descriptive. It has artistic blotches of beige and pink and purple and white and navy blue on it, so I guess camouflage works to describe it.....for when I go to those girly post combat parties?
The mall is crazy, especially on a Saturday, so I wanted to include a picture of my typical view as I try to maneuver through the aisles and hallways.

My wheelchair is at butt height, which has benefits and drawbacks depending on the situation. ;) It also means that if you refuse to get out of my way after plenty of notice my foot rests are at a nice shin height.

I went in to use the restroom and there was a staff member doing a quick cleaning job of the bathroom. She went into the handicap accessible stall and then came back out and, well she let the stupid fall out of her mouth. She asked me "Do you need to use this stall?" I replied "Well, I pretty much have to seeing as I can't fit in the others.". Um, duh?
I am finding that some of the foods I am now stuck eating really are not that bad. I really actually like the infant oatmeal, and a brand of apple yogurt oatmeal that comes in a jar, and a microwave meal of macaroni and cheese and carrots (the noodles are so soft they melt as you eat). I tried a veggie one with zucchini, carrots, and some other veggies and heated up it tasted like a soup so I have more of the meat and veggie ones to try and eat as soups to get more protein and veggies. I had to throw away the freeze dried bits of fruit that they sell for babies as they were too solid for me and I choked. Choking is not on my list of things to do today, or any day. I also discovered that I can mix muffins with milk and make a concoction that is smooth enough to eat and really still yummy.
In a testimony to the cognitive changes of this delightful neurological disease, I have been so very carefully using a program on my iPod as a checkbook. Something told me to compare my available balance between my checkbook program and the bank. There is a $500 difference, not in my favor, and I have spent an hour looking over the transactions online and can not figure out where I screwed up. Thankfully I had some money left in savings that I transferred to my regular account and my mom is going to help me, and I have paid for the most expensive prescriptions already, but damn. How do you make a $500 mistake and not even be able to figure it out????

The Stupid Just Fell Right On Out

I was out shopping the other day, and after spending a few hours in my AFOs they were causing me so much pain that I had to remove them immediately. So I took them off and placed them in the canvas bag on the back of my wheelchair along with my purchases. The following conversation then occurred.

Creepy Guy: What happened to your legs?
Me: I caught dystonia. I wouldn't come too close, it is very contagious.

Not one of my finer moments for educating others, but it sure felt good!

Today I was waiting near the door of my mother's apartment building for a bus to come. A visiting nurse who was exiting the building opened the door to go out, turned and appraised me and then asked the following question.
"Do you need to be let out?"
Um, yeah lady. I am sitting here waiting for someone to rescue me and take me for my afternoon walk. That automatic handicap accessible door button is just so confusing!!
My real answer: *eyes roll* Um, no. I am waiting for a bus, and I can manage the doors just fine but thanks for checking.

I'm gonna be a movie star!

The return of the dysphagia, the severe nausea, the pain in my stomach, the bloating after eating a single jar of baby food, the gagging, and the vomiting in my sleep have earned me the honor of having another EGD done. So on the 19th I will be sedated (Ha! The anesthesiologist has no idea how hard I am to sedate!) and have a camera placed down into my stomach to see if there is anything they can see. Biopsies will probably also be taken, just for the fun of snipping away at a bodily organ if for no other purpose. All I have to say is that if they try to rouse me from the sedation this time with a sternal rub someone is going to have a hand run over with a wheelchair repeatedly. I had knuckle imprints on my chest for over a week!

Sleep ate my brain
I had more to write, but it is now midnight and my brain is turning into a mushy puddle of sleepiness. Lets see, I did make a trip to Walmart today to stock up on the food supplies and was pleased with their variety of infant/toddler foods. Not really cheaper than Target but way more selection. I am losing weight, which is not a totally bad thing but this is absolutely not how I wanted to do it again!!
I will write a real entry soon!!

Well, my self imposed vacation lasted a record 24 hours ;) I had decided not to write because I felt that all that I had been writing lately had such a negative or melancholy tone to it. But the more I thought about it, and with some advice from a friend, I realized that not everything about living this life is going to be easy and that if I want to be honest here I need to write about the good, the bad, and the ugly.
In medical news, I am not sure what I wrote in the last post but I am currently very angry at the Dr who assured me that he knew exactly what was going on and was so positive of the diagnosis of Mitochondrial Disease - so positive that he had me receiving benefits from the MDA. So positive until the DNA results came back negative. He sold me hope, and I was so careful to ask him again and again if he was sure because I have been down the road of false hopes so many times before. He wanted to then refer me to the Mayo Clinic, but financially I can not afford the expenses of travel, lodging, etc. that go along with such a medical trip. Therefore, it appears the medical consensus is that I have an unidentified progressive neurological disorder that shall not be named. Treatment will be symptomatic. As much as this sucks, and it sucks on a grandiose scale, I am weary of all of the testing and the appointments and the feeling like a laboratory specimen and the false hopes and the never ending cycle. I just want to have some sort of a life.
I made the appointment for my Botox injections today, and the soonest the could do the injections was August 4th. By my calculations, that is 34 days away - nothing like prompt service with a smile. :) I have one neuro appointment on the 20th to figure out who is coordinating care and to discuss symptom management, and the fact that I prefer to have the general neuro rather than the specialist in charge of my care (especially after the false hopes).
This Tuesday I have an appointment with a new GI doctor for the dysphagia that has returned with a serious attitude problem and the severe nausea, stomach pain with eating, bloating with eating, and other fun stuff it brought along. I am back to eating Gerber products - if you ever need a recommendation on their baby or toddler food, let me know I have eaten just about all of it. I almost choked to death last night on the bready part of a bagel and so am stepping down from soft foods to more blender/pureed consistency. My throat and chest still hurt today from that choking episode. I definitely do not want my tombstone to read "Death by Bagel"!  Now death by chocolate.... ;)

Ring around the Rosies
A Pocket full of Posies
Ashes, Ashes
We All Fall Down