I considered removing the post from a day or two ago, but the emotions in it are so very real and are just as much a part of what this journey entails as the laughter and joy. It may not be as pretty or enticing, but it is a side of dealing with this and the truth is that even though I am able to remain positive a lot of the time, I am only human. When I read back through this at a later date, I want to read back through and see an accurate representation of the journey - both the beauty and the shadows. I apologize if that makes anyone uncomfortable.
Moving onward, today I have a very important medical appointment with a top specialist at the University of Michigan. He is a neurogeneticist and also a specialist in progressive spastic paraparesis/paraplegia. My amazing neurologist referred me to him for a consult to see if he thinks this fits the pattern of the progressive spastic paraparesis (PSP) or if he has any other ideas regarding what this could be. All of my doctors seem to agree there is a genetic disorder at play here, because the statistical odds of so much "going wrong" in one person at such a young age at the same time without a genetic "umbrella cause" is astronomical. As one neurologist put it the odds are like being hit by a bus while being struck by lightning and winning the lottery without having bought a lotto ticket.
This will make for a long day. A long drive, most likely a long wait for the doctor (specialists never seem to run on time), a potentially long appointment (the paperwork said 1-3 hours! What takes 3 hours???), and then a long drive home. But if there is hope for answers, it is all worth it. I am nervous though. I am nervous that once again I will get my hopes up only to have them smashed. I am nervous that the doctor will not be receptive to listening to me and truly hearing me. I am nervous that once again I will be treated with disrespect and my concerns and knowledge devalued. I am nervous there may be no answers. I am giving these fears to God and praying that His will be done, and that I have an open heart to His will.
It is beyond cold here today (windchill is in the negative digits) so this could make for a fun doctor visit. Because of the dysautonomia I have to dress in layers in order to maintain body temperature. Layers include leggings, leg warmers, and multiple pairs of socks underneath my jeans, and two or more shirts layered beneath my jacket. In winter I always have to wear a hat to help keep warm (sometimes even in the house), and scarf and gloves. So I have a feeling I may end up having to change once I am at the doctor's office to remove a few layers. I am very much like the kid in A Christmas Story who can't put his arms down. But it is either that or my body temperature rapidly plummets. Considering I drop down around 97.4 inside the house without provocation, imagine what it would drop to outside in the cold!!!
I will update with any news from the doctor, any funny stories, or with a new journal entry soon. I have coffee to finish drinking and then I need to start to assemble the layers for the day. :)

It was a cold and foggy morning, just before the sun would begin to ascend in the sky and start to slowly burn away the misty vapor that encompassed everything in a murky haze. While neighbors slept soundly in their warm beds, completely unaware of what was lurking in the dark fog, creeping ever nearer to my home. By the unholy hour of seven o'clock in the morning, before the sun's rays had struck over the horizon and as the darkness continued to cling to the cold blanket of foggy mist a rattling tapping was heard on my metal screen door. I knew it had come for me. Through the darkness, the fog, and the unholy hour it came and my defenses were not strong enough to even attempt a counter attack. With a groan and a deep breath, I flung open the heavy metal interior door to reveal one perky vampire dressed in Old Navy Fleece standing outside my door. Vampires should never be perky, let alone at seven o'clock in the morning but apparently she had not read the Vampire Handbook. This might explain why she was eagerly working as dawn approached instead of in the full coverage of the darkness of night - she had not yet read the fine print of her alternative lifestyle. I invited her in, since everyone knows a vampire can not enter a dwelling without an invitation from a living human being who does not seek blood for a living. Her hands were as cold as ice as she decided which vein in my arm would provide the best access for the snack sized tubes of blood that she needed to collect to ship off to the central laboratory for investigation into my human genetic structure. I think perhaps one small tube is saved and allowed to age like fine wine for taste testings much as we perform wine testings. As she slid the gardenhone, um needle, into my arm I think I caught a flash of fang glimmering in her grin as she watched my blood quickly fill up the tubes. Ruthless vampires. With a square of gauze and a bandaid, guaranteed to cause a rash as I am as allergic to medical adhesives as vampires are to garlic, she was finished. So now my blood will be intrusted to the vampire couriers of FedEx and I can go back to sleep for a while since it is still dark outside! The results of the genetic testing on the blood collected will more than likely take a while, as the nerds try to separate out the specificly identified genetic markers to see if I possess any of them, and I am just thankful that the sphincters at the insurance company have agreed that these highly expensive tests are indeed covered and medically necessary. Vampires and nerds and Sphincters, Oh My!

Tomorrow morning I return to my glorious life as a human lab rat as I undergo testing on my bladder and kidneys to determine what damage, if any, has been done by the fact that my body has decided I do not need to receive the nerve signals from my bladder all the way up to my brain. Apparently I need to learn to read the fine print about these tests before I agree to participate as I am going to end up having two tubes inserted into what I distinctly identify as exits only and electrodes placed on "sensitve areas" to measure nerve responses as well as having my bladder inflated like a water balloon. Oh the sick and twisted minds of the medical world, what will they think of next? I am not a fan of tubes, especially tubes in exit routes, let alone tubes in exit routes inflating me like a human baloon animal so this is going to be a miserable Wednesday morning. This makes the Kidney ultrasound seem like pampering at the spa afterwards! I so enjoyed my vacation from all of this medical stuff, and I am grumpy about having to come back to reality. Starting at 6am tomorrow I have to work hard at drinking clear liquids, but can not eat anything which I am sure will do wonders for my attitude when combined with the fact that I am going to be awake for the third morning in a row at an indecently early time. At least when I was little and had to undergo miserable testing I got bribe gifts of a new book and either a stuffed animal or other small trinket; now that I am an adult I have to just suck it up and deal, not even a sticker or lollipop. I really need to read the fine print because that just seems wrong! ;) Always, always read that fine print!