And God Laughs
I told God my plans and He laughed. So now I am living, laughing, and loving according to His Plans.

Time

1:54 PM
Time has always been a difficult concept for me to experience in the same ways as others; perhaps because of the lack of a natural sleep wake cycle that would frame things into intrinsic patterns of days and weeks. It is often the case that once I sleep, be it a two hour nap or overnight, an event is transferred to the distant part of my memory so whether it happened that morning or when I was five I experience it pretty much the same way. I realize that I am odd and that this probably does not make sense even in writing, because I know from experience with others and studying in college that this is not the way the human brain is supposed to be wired to work. What can I say, I was never manufactured to factory specifications. ;) I must say there are advantages to my odd sense of time in that I am highly adaptable to most circumstances and can adjust to just about any living situation or routine change.
So with this odd and unique method of experiencing time, and the ongoing process of adapting to and accepting the long term implications and progression of this neurological disorder, my coping has been a bit different from the standard expectations. In many ways this has already felt like "normal" (i.e. what I remember and am used to) for a long time and memories of my other life before this feel as far away as memories of the bedtime stories I used to listen to as a little girl. Yet in other ways it is still raw because each morning there is that briefest of moments where I forget, where everything seems as it always was, and then that moment ends in a sudden realization of all that has happened. It is one of the sweetest moments followed by one of the most bitter. I still long to have the freedoms I used to have, the freedoms of not having to rely on others to access the world in so many ways, the freedoms of movement unhindered in my body. Yet these freedoms seem almost like a dream that I had, almost like a faded old photograph of something that was so long ago instead of less than 18 months.
Even my dreams at night are changing. In my dreams I can still walk, still run, still dance but now at some point in my dream I realize or "remember" that these are things that I can not do and am confused. I may walk in my dreams but I am somehow unable to do the one thing that is necessary to save someone I love. I am becoming restricted even in my dreams. Slowly it creeps in where it does not belong.
I am not dealing with as much anger over this happening as I am dealing with a longing to just finally have answers, to have a diagnosis, to have a name for it and perhaps ideas of how to treat it. I still sometimes have bad days when I mourn for what I lost, even though it may feel like a long time ago it cuts into my heart very deeply now, but I have many more days when I am alive in the moment and thankful for all that I have been given. It is a challenge when new symptoms, or progressions of symptoms of the related dysautonomia continue to pop up, but I have never backed down from a challenge before. I would just really like to know what I am up against, and how best to fight it now and through times to come. Because I have miles to go before I sleep. :)
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Much Too Young To Feel This Damn Old

6:02 PM
I don't think Garth Brooks had any idea of just what those lyrics "I am much too young to feel this damn old" meant when he sang them. At age 28 I frequently feel like somehow, even though I still can't pass for 21, I have gotten a recycled body that already has a good 100,000+ miles on it. I am thankful for all of the ways that my body systems manage to get things right each and every day, and marvel at how something so small can cause things to go so wrong. I am still dealing with issues from the dysautonomia - apparently it has decided that it needs some attention now. On Monday at my doctor's appointment my blood pressure was inaudible, which means I was in the freakish low category but somehow I managed to sneak out of there without a trip to the emergency room for fluids and monitoring. I did not get a free pass on everything though and have to undergo some unrelated tests. Oh the fun never ends. When the doctor asked when my last mammogram was I told him I was only 28 and that according to the owner's manual, I had another 12 years on these things before they needed to be taken in to the shop. Well, on Tuesday they get taken in to the shop 12 years early. So anyway, all this week I have been having issues of sudden drops of blood pressure when I sit upright or stand which makes life interesting. I have found myself lying flat on my back in some interesting places in order to avoid passing out. I call it inspecting the ceiling.
Basically other than the medical stuffs my life is pretty boring right now, and boring is pretty good. I do need to come up with a better topic and write more on here soon. Oh I tested my wheelchair in snow this past week and it does well - better than the old rental by a great deal! No more damsel in distress stuck in a snowbank!! I also tried to explain to an old lady today that the reason I looked just like someone who was in a wheelchair and used to live here but with darker hair is because I AM that person and failed miserably (my hair is lighter red in the spring and summer when I am in the sun more). We both ended up confused, but she said next time she saw that other girl she was going to tell her she had a twin. I gave up. I guess I have more than one self. It really is Me, Myself, and I afterall!
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Day Two: Regaining Battle Ground

10:50 PM
After yesterday's day long dysautonomic crash/crisis, today I was delighted to awaken and discover that I was able to tolerate a more upright position without my blood pressure crashing faster than the stock market when bank bailout loans are due. My BP hung out in the 90s/60s today, but I tolerated it better - only having to retreat once to the absolutely flat and immobile emergency crash position. Usually I am fine until it hits 80s/50s, so I think there is something else underlying this ongoing siege of the dysautonomia. One is certainly dehydration, as I am struggling to maintain fluid intake. I do not have any interest in an IV though, so I am doing my best. Trying to drink when you have no sense of thirst, and then adding on top of that feeling poorly is quite a challenge. Tomorrow morning I am going to have some Gatorade dropped off so that should help some with electrolytes - I know pedialyte is better but I have issues with that stuff. Another possible issue is an underlying infection as I have a low grade fever and signs of my chronic sinus infection flaring to a more significant infection. So I am starting a 10 day round of cipro tonight to hopefully take care of any underlying infection. I also have an appointment Monday with my internal med. Dr. just by chance, so if I am not better I can mention this all to him - not that he has any clue how to treat dysautonomia. :) Gotta love rare diseases. Bonus for the day was being able to sit propped up on the couch and in the recliner! Also able to enjoy watching the opening ceremony of the Olympics (I am getting tired so I am recording it now to watch tomorrow AM). I did well in my wheelchair to maneuver around the house, but for any extended time I would start to lose trunk control and just was too weak to maintain a good position in my chair. Hopefully a full good night's sleep, fluids, and antibiotics will help tip things back into my favor!
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Error, Error...Can not Compute

2:46 AM
Yes, it is 2:30 am and I am lying on the couch awake, having a small snack after just having taken a bath, and writing here in my journal. No, this does not seem odd to me but I have the full context of my day. To put it bluntly, the dysautonomia kicked my arse today and spared nothing in its processing malfunction. Sometimes I can figure out a trigger for what set off the dysautonomic "crash" or crisis, but considering I woke up at 7:30am with a severe headache, nausea, and low blood pressure I am pretty sure there was no extrinsic trigger unless sleeping is now bad for me. All day my blood pressure hung out in the 90s to 80s over low 60s/upper 50s. Not the lowest I have ever gotten, but sustained over a long period of time it was miserable. I spent over 6 hours lying absolutely flat, trying as hard as possible not to move, listening to audiobooks and sharing my bed with my trusty blue barf bucket emesis basin. The rest of the time was spent lying flat on the couch. I drifted in and out of sleep, and ate a grand total of 2 bananas smashed up, a handful of pretzels, and a popsicle. I fell sound asleep at about 8pm and slept until 12:30am, when I woke up and realized that my brain had rediscovered how to regulate and process the little things in life like blood pressure, heart rate, and digestion. Unfortunately I was dealing with dehydration from not drinking enough while being so sick (yes, I could have gone to the hospital, but I was feeling too miserable to deal with people poking at me and all they can do is run IV fluids) so I was having severe muscle cramps. I made myself a large cup of green tea and took a warm bath to relax the muscle spasms. Now I am working on catching up on fluids a bit before I try to sleep some more. My poor brain is still very edgy, and a bit confused regarding time of day, and processing things a bit slower than normal but I will take that over being literally knocked flat on my back for17+ hours. The dysautonomia is probably the hardest thing I deal with medically because it has the capability, and frequently uses it, to bring my life to a sudden halt and to hold me captive to a body that is flashing error messages and failing to compute the most basic of tasks. I never know when it is going to go into a crash/crisis and there is no current treatment in place other than fluids and time to treat a crash/crisis. It has the capacity to suddenly become life threatening, and I always have to be vigilant about trying to get enough fluids even though the dysautonomia causes anhydrosis - a lack of the ability to feel thirst- and consistent nutrient intake even with impaired digestion and avoiding known triggers and trying to catch a crisis before it escalates. I so appreciate and am thankful for all of the amazing things the human body does every moment, every day without our conscious thought and am doubly thankful when my brain gets them right instead of hitting an error message.
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Grocery Shopping: An Adventure

7:21 AM
I usually do my own grocery shopping with minimal to no assistance. I may be creative and adaptive, but I have yet to find a way to push a shopping cart while using my wheelchair. I refuse to use the power carts because I really don't need to add battery power to my erratic driving as an announcement would follow me throughout the store "Clean up on aisle 9....Clean up on aisle 8...Clean up on aisle 7". I also have no desire to trade my $4000 wheelchair for a wheelchair with an attached lap basket and trust that nothing will happen to my chair as it sits basically unattended at the front of the store. That is not a fair trade. So what I usually do is use two or three reusable shopping bags hanging on the back of my wheelchair, and as I shop I place the items into these bags. With proper packing, I can easily get a week's worth of groceries this way. I rock at packing reusable shopping bags, I just need to learn to be aware of the added weight on the back of my wheelchair. Thank God for wheelie bars!! And I swear there is a conspiracy to place whatever items I need on the top shelf so that I either have to play damsel in distress and ask for help (ugh!) or unbuckle my feet, undo my seatbelt, and hold on to the shelf to do the amazing standing gimp trick. That one really freaks people out because they assume that since I am in a wheelchair, especially one with more complex foot restraints, that I can not stand, so when I suddenly pull myself into a standing position to reach something they totally freak out. Sometimes I choose that one just for the effect. ;)
Well, on Monday I had the opportunity to go grocery shopping with an accomplice. Because we were going to receive a decent amount of snow (about 8-10", not that impressive by Michigan standards but enough to limit a wheelchair's accessibility until everything is plowed, salted, and plowed again), my Dad took me grocery shopping so I could get anything I might need for the next few days. His job was to push the shopping cart behind me, and my job was to toss items into the cart over my shoulder. This worked well until he became distracted, and not having eyes in the back of my head (as much as my students would beg to differ) I picked up a package and tossed it over my shoulder. Instead of hearing it land in the shopping cart, I heard it land on the floor. The woman scanning the shelves next to me turned and stared at me as if I had lost my mind, having just taken a package of food and thrown it over my shoulder for no apparent reason. I just laughed as she backed away rapidly. When my distracted father caught back up to me, I told him that he had missed something, and asked him if he could please pick it up off the floor for me. :)
When we went to check out there were a lot of other people doing the winter storm stock up, and there was one cashier working. Great planning. So I went to wait in line. The older woman ahead of me turned and waved me ahead of her. I tried to tell her I was fine waiting, but she insisted and well, her cart was filled while mine was not so I figured if she wanted to do something selfless but silly who was I to stop her? Inside I was thinking "sucker!" because I am anything but pitiful or helpless. Then the guy ahead of her did the same thing. I seriously tried to protest, but to no avail, so I went from 4th in line to 2nd. I mean, I have a seat while I am waiting, its not like I have to stand in line people!
Then the fun part - the putting away of the groceries in a kitchen roughly the size of a handicapped bathroom stall. There is no room to turn my wheelchair around in the kitchen - it is pull in, back out. I have to wheel out to change my mind. Storage is limited in my kitchen...heck space is limited in my kitchen, so I have to be creative with my storage options especially adding reasonable accessibility into the mix. By the time all of that was done, I was ready for one of the special treat ice cream cones I had bought - I think it was well earned!
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Bigger Than My Body

10:29 AM
Frustration has become a frequent visitor as I am constantly reminded of how different my life is from those of my "peers", and as I continually discover obstacles big and small where they never existed before. Most of the time I am pretty good at using my skills honed as a teacher to problem solve and either create alternatives or adaptations. Some things I have yet to figure out and are just annoying, like the fact that at least once a week I manage to forcefully jam a thumb between a rapidly moving wheelchair tire and the immovable brake gear. This happens because for some odd reason I can not figure out, when I am not thinking about it I push my wheelchair by the wheels more than by the push rims. I partially blame the "genius" who never asked me what kind of push rims I wanted and instead made an executive decision for chrome. Because shiny metal is so easy to grab, does not possibly rip skin from your hands and cause frostbite when it gets wet in the cold Michigan winter, and could not ever become burning, scorching hot in the summer. My patience for the stupid that seems to bloom in people when they see someone in a wheelchair has been worn very thin, and I am not yet at the point where I feel like being an educator and advocate about disabilities. Children do not bother me - they are curious, I love when they ask questions, I love watching them process it all. Adults who assume that because my legs do not work according to standard operating instructions that my brain must also operate on a different frequency frustrate me. People who assume that I have become hearing impaired because I am sitting down make me laugh, but annoy me. Anyone who asks me where my parents are or who is with me or if someone forgot me triggers the redheaded anger, which is not recommended. I am tired of the world defining me by my body when I am not my body. My body is a tool that I use that allows ME - my thoughts, my ideas, my emotions, my personality, my existence- to navigate through life. I am so much bigger than my body.

Bigger Than My Body - John Mayer
This is a call to the color-blind
This is an IOU
I'm stranded behind a horizon line
Tied up in something true

Yes, I'm grounded
Got my wings clipped
I'm surrounded (by)
All this pavement
Guess I'll circle
While I'm waiting
For my fuse to dry

Someday I'll fly
Someday I'll soar
Someday I'll be so damn much more
Cause I'm bigger than my body gives me credit for

Why is it not my time?
What is there more to learn?
Shed this skin I've been tripping in
Never to quite return

Yes, I'm grounded
Got my wings clipped
I'm surrounded (by)
All this pavement
Guess I'll circle
While I'm waiting
For my fuse to dry

Someday I'll fly
Someday I'll soar
Someday I'll be so damn much more
Cause I'm bigger than my body gives me credit for
Cause I'm bigger than my body now

Maybe I'll tangle in the power lines
And it might be over in a second's time
But I'll gladly go down in a flame
If the flame's what it takes to remember my name

Yes, I'm grounded
Got my wings clipped
I'm surrounded (by)
All this pavement
Guess I'll circle
While I'm waiting
For my fuse to dry
For my fuse to dry

Someday I'll fly
Someday I'll soar
Someday I'll be so damn much more
Cause I'm bigger than my body
I'm bigger than my body
I'm bigger than my body now
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Pancakes

11:57 PM
I made a perfect batch of pancakes for dinner, and was singing and "dancing" to celebrate this accomplishment. You have to understand that I have issues with pancakes, or rather pancakes have issues with me. I first learned to cook pancakes way, way back when I was in high school at the house of one of my best friends. Cooking was done for survival in my house growing up, not for enjoyment. So my friend and her family were shocked that my cooking list at age 16 was limited to spaghetti, scrambled eggs, grilled cheese, ramen, and anything microwaved. Thus they added pancakes to the list. The last time I made pancakes was back in high school. I have my family attitude that overall cooking is a lot of work and is done for survival, although recently I have learned how to cook many new things and been successful. So after I moved into my apartment I decided I would have an "easy" homecooked dinner and make buckwheat pancakes for dinner. Once the smoke cleared and the smoke alarms stopped sounding about 30 minutes later, all of my neighbors knew that I had managed to singe a batch of pancakes. For weeks I had little old ladies coming up to me and asking me how my pancakes turned out. Cute granny, real cute. So then I won an electric griddle at a Christmas party I attended with my Stepmom and thought that maybe the issue with the pancakes was the frying pan from before I was born that I had used. Another batch of buckwheat pancakes was mixed up and although I dodged setting off the smoke detectors this time, my success was still null. I mumbled inappropriate words under my breath as I threw the package of unused mix away and swore off pancakes. Until today. I had purchased Bisquik pancake mix, the simple and no frills not so good for you but hell of a lot easier to use stuff I grew up on, and I decided it was time for the third and final go round with pancakes. I also should mention that cooking just about anything is a huge endeavor as it is because my kitchen is a standard small galley kitchen and nothing is modified for a wheelchair. I can stand for short periods of time, but too long and my legs turn funny colors and I lose the ability to keep them under me. Cooking is an extreme sport. So using the Bisquik and the electric griddle I made a complete batch of perfect pancakes - not one was burned, not one was too doughy!! I have leftovers in the fridge to microwave tomorrow and leftovers frozen for another time. I was a pancake making marvel. I proved that I could do it, and I had a delicious dinner at the same time. And in the end, you know it was about so much more than the pancakes.
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Job 8:21

"He will fill your mouth with laughter and your lips with shouts of joy."



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Wild Olive

Wild Olive

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Creative Victory

This is Me

I am a thirty year old enigma who has defied every expectation ever placed upon me and refused every definition created for me. My greatest passion in life is to make a difference in the lives of children with special needs and their families. As a special education teacher I broke all of the unwritten rules to make sure that my kids received the services they needed and had a right to receive. I have never been so proud to be reprimanded before in my life. Now, due to unpredictable twists in life, I am learning first hand what life is like when you rely upon a wheelchair for mobility. I am a medical puzzle with the pieces slowly being identified and put together, and my medical bills alone could fund a small nation. It takes a village to keep me alive. :) However, I am not defined by the genetic misspellings. I am a teacher, a daughter, an aunt, a friend, a dreamer, a reader, an amateur photographer, a writer, an advocate, a star gazer, a world changer. I am stubborn, situationally shy, quick to use humor and wit to make others laugh or cope with a situation, sarcastic, fiercely independent, giving, compassionate (sometimes to a fault), protective of those I love, defiant of arbitrary boundaries, perfectionistic, self conscious, self assured (yes you can be both!), articulate and occasionally dramatic. And that is just what I could fit in two sentences! :)

Who's On First, What's On Second, I Don't Know! (Third Base!!)*

Simple Vocabulary Definitions for those who may not speak fluent medical :)

Undiagnosed Progressive Neurological Disorder- This is the diagnosis that is believed to make everything else fit together. It explains my frequent infections, my muscle weakness and dystonia, my dysautonomia, my cardiac issues, my inability to regulate blood pressure, my dysphagia, my ataxia, my severe fatigue, my extreme nausea, my gastrointestinal dysmotility and IBS like syndrome, my unbelievable migraines, my sensory changes in my arms and legs, my vision issues, my hearing loss (so much for blaming medication), and so much more. Going back to infancy and childhood, this would explain the severe apnea, the significantly delayed motor skills, the reason why I could never keep up with my peers in physical activities, the neurogenic bladder, the malfunctioning thyroid, and my frequent illnesses and vomiting. This is the diagnosis now being used since the DNA testing for Mitochondrial Disease came back odd and I can not afford the expenses of a workup at the Mayo Clinic. We are treating symptomatically.

Pan-Dysautonomia- "Pan" means that it impacts many different systems of my body, "dysautonomia" is a failure of my autonomic nervous system or the part of my brain that does all of the automatic things that do not require conscious thought like telling your heart to beat, regulating your blood pressure, adjusting your body temperature, maintaining balance in space, digesting food, hunger and thirst, etc. It is believed that I have had this from birth based upon my history of symptoms, including severe life threatening apnea as an infant, but the cause remains elusive at this time

Dystonia- abnormal muscle tone and spasticity, including painful spasms, that primarily impacts my feet and lower legs and is now starting to be a problem in my back

Ataxia- difficulty maintaining balance and coordinating/executing movements

Dysphagia- difficulty swallowing due to any number of causes including muscle weakness and poor muscle coordination

Adipsia- the absence of a sense of thirst



Other Medical Issues- Lupus Anticoagulant (autoimmune disease that causes me to tend to form blood clots and has already caused two deep vein blood clots and one mild stroke), Migraines, unknown connective tissue disorder, abnormal gastric motility, allergies, history of v-tach and severe sinus tachycardia, changes to my echocardiagram that include leaking valves and a new murmur, low blood pressure, ataxia, untreated PFO (small hole in my heart that increases the risk of stroke), chronic lymphadema in my left arm, Hashimoto's Thyroiditis, Narcolepsy/Idiopathic CNS Hypersomnolance (believed to be a result of the dysautonomia and my brain's inability to regulate the sleep/wake cycle), mild hearing loss, malformed optic nerves, polycystic ovarian syndrome, pernicious anemia, vitamin deficiencies


* Title comes from an old Abbot and Costello routine that I chose to memorize in 6th grade and absolutely love.
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