Saturday, January 14, 2017

Long Time No Write

I want to start by apologizing for having not written in a very long time. I have been going through a lot of pain and therapy and therapy and therapy.

On August 2, 2016, I was officially diagnosed with tardive dyskinesia, also known as TD. (I give you this link with 2 disclaimers: first, it's Wikipedia, so take everything with a grain of salt; second, my neurologist assured me that even though my symptoms aren't in my face primarily, it is completely normal for a person of my age with TD to have all of the symptoms but not facial involvement.)  Since then I have been doing occupational therapy (ortho and neuro), art therapy, and the individual and group therapies I had previously been doing. I have been evaluated for neurological physical therapy, and though it was found that a weighted vest can help with some of my balance issues, my insurance won't approve me having physical therapy treatment or the vest because I know how to compensate enough to perform the standard tests (namely BERG) flawlessly and never actually fall because I'm a pro at compensatory strategies. The physical therapist did find deficits, and I told her that performing a dynamic gait index would be the ideal way to prove my balance issues, but insurances don't consider that an acceptable test.  I've been trying different medications to make the spasms and pain easier to cope with. Unfortunately while the medications do make it easier to cope with, they don't make it a whole lot easier. And as far as long-term outlook, my neurologist is hopeful and optimistic that I will recover with how young I am. The question of the day, every day, is "when?"

I promised you symptom presentation, but my symptoms change on a regular basis and are complicated at times. The easiest way to explain everything is that my left hand doesn't do exactly what I tell it to do, especially when I tell it to do it. Writing is the most painful and difficult thing for me. Typing is next. With both of those and other than that just using my left hand causes my entire left arm to tighten up. I've developed left shoulder pain from the tightening. My left hand occasionally tremors, too. And did I mention that I'm left-handed? I also have spasms in my right hip, back, and quads. My right hand works pretty well for the most part, but I did develop de Quervain's tendinitis because I had to use my right hand so much all of a sudden. That has gotten better, and my carpal tunnel in both hands has almost entirely resolved. Without surgery, TYVM. I fidget a whole lot. I have to constantly be doing something with my right hand. I even have something I hold on to and fidget with to fall asleep. It was made for infants, but it does the trick.

I have been seeing a pulmonologist and was diagnosed with exercise-induced asthma, which I have probably had all of my life. Unfortunately everything she's done to treat me has not done anything. I actually see a sports medicine doctor on Monday to see if we can stop throwing grenades at something that could probably be hit with a BB gun. I also plan on asking him about my chronic shin pain and recurring toenail bed trauma.

I am currently volunteering for two different nonprofit organizations. I see vocational rehab on Wednesday to see if we can work out getting a paying job where I can do pretty much what I've been doing volunteering. I do a lot of data entry, and I basically get as much done as I can, then based on that decide what I can do next. Some days it means I have to take the next day off. But I frequently do a lot more than is expected, so I'm likely overdoing it. My hope is to find some sort of job I can do from home or from an office, on my own schedule, and get paid for the work that I do instead of the hours that I work. One of my biggest fears is interviewing because due to the TD my body language doesn't reflect my thoughts. I also get really anxious and can't answer questions as intelligently as I would if I felt I had time to think through my answer and my wording. As you can see, I do well if I can type something out, read through it to check the phrasing, rephrase, edit, and send when I'm ready. I don't do nearly as well in person.

As far as running goes, I am signed up for my first 2 half marathons this year. I'm doing the SHE Power Half on June 11, and the Indy Women's Half on September 30. I am still scared out of my mind about these (fear of failure), but I'm doing them anyway. I have been accepted into a group called Achilles International. There are a lot of groups that focus on having runners run on behalf of people with disabilities, like IR4. I run for myself, to prove to people that there are people with disabilities that CAN run and DO, and also to hopefully teach people about TD and mental illness. Achilles International inspires people with disabilities to be active, regardless of how you move. You can run, walk, or push a wheelchair, you just have to cross the finish line.

I'm not sure what else has happened since the last time I blogged because so much has happened and my memory is really not good. It's not that I lose time, like with dissociation, it's that time seems irrelevant. So I could've done something yesterday and thought I did it today, I could've done something six months ago and thought I did yesterday. It's really frustrating. But I think it's something I'm going to have to live with for a while. I tell my doctors about it, but tell them that I'm not really too concerned about it because it doesn't affect a whole lot in my life when I'm not working. When I start working that could be an issue though. My calendar on my phone is my lifeline. I'm forgetting names just as much as usual, though.

I'm going to try to blog more often this year now that I've gotten fairly good at typing with my right hand with my left hand occasionally helping, and I have speech to text software on my computer. I also can and always could do this on my phone, but I don't...because talking about TD is hard for me. I realized that the whole situation, being told that my movement issues were nothing for more than a year, then being told they were something but irrelevant, and now being in near constant pain and unable to do simple things like writing because of the movement issues really traumatized me. On top of that, as I was starting the acceptance process of the diagnosis, I realized that something else that happened over 3 years ago that I thought was irrelevant was actually traumatizing. So I've had a lot to process. But I persevere. My spirit animal for 2017 is the phoenix. I was really inspired by the character Fawkes in the Harry Potter series. He goes up in flames, then is reborn from his own ashes. His tears have healing properties. And he is incredibly strong. How is that not a great representation of my life right now??!!

Like the Phoenix I rise from the ashes of life 
I don't need fortune or fame Just some peace of mind
Like the Phoenix I fly leaving the lies behind
Future's golden for me 
There is no one who can stop me now
"Phoenix" by Stratovarius

This is the year of the phoenix
Let all legends come to life
Turn the silence into thunder
Believe in one more wonder
Out of the old let the new arise
Forged in fire stronger than demise
"Year Of The Phoenix" by Pyramaze 

You've got the heart of a phoenix
So let them see you rise
Let them know that you mean it
Let them see you rise
"Phoenix" by Olivia Holt

I'll be seeing you around!
Twitchy Tina

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