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

Randomimity

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.
3 comments:

I'm all for a second opinion, but I understand the difficulty that comes with getting hopes up and potential disappointment.

Can your neurologist provide some botox to relax your feet while your skin heals? That is if you want to go that route and there are no contraindications. Not advising here, just mentioning options I know.

I first tried a glue gun when I was older than you. I have no scars to show for it, but I am far from a MS user of those scary hot guns!

I am thus reassured you will be woken if there ever is really a fire.

Barbara


We have discussed using botox but it is tricky because I use the excess tone in my muscles to some extent to provide stability for functioning. Beneath the spasticity is extreme muscle weakness and ataxia. If we were to accidentally get rid of all of the excess tone, then I would actually lose more functioning than I have now. Plus with an immune system that struggles with a cold, the idea of injecting even small amounts of a toxin creeps me out for fear of a systemic reaction.
If there is ever a real fire, with these old fire alarms the entire neighborhood will be woken up. These things are the loudest, most persistent, hardest to shut up things I have ever heard (besides small childen having meltdowns, but I can tune those out)! :)


If it makes you laugh...
When I was a twentysomething and in my first apartment I happened to have a very messy place-- I went to visit my boyfriend and when I got back I heard from the landlord that not only did my fire alarm go off but did I need housekeeping help... agh!
I also mopped the floor with the overflow from the dishwasher...
at least people cared to notice me...
I am still embarrased that my apartment was so messy---


Job 8:21

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



Blog Info

To read a post, just click on the title for that day's post and you will be taken to the entire journal entry. If you click on the photograph, you will see that picture enlarged.

Wild Olive

Wild Olive

BlogHer

BlogHer.com Logo

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.
There was an error in this gadget

Labels