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.