Tuesday, June 13, 2017

The "Minor" Medication Change that ALMOST Ruined my Goal

(Note: this is a post I wrote for The Mighty, but since their turn around time is 3 weeks I thought y'all deserved the story a lil bit faster.)

In early September of 2016, a friend playfully challenged me to join her for a race on June 11, 2017. She was planning on doing the half marathon (13.1 miles) and assumed I’d be doing the associated 5K (3.1 miles). I had done several 5Ks in the past, and I playfully asked what made her think I too couldn’t do the half marathon. True, I had never done one before, but that’s just a minor detail. A decision was made rather quickly and I paid for registration for the half marathon on September 8, 2016. I started pre-planning to walk/run the race immediately with a goal of just finishing. The plan was to start pre-training in January, then follow a 12-week plan that would start March 20, 2017.

My pre-training didn’t happen due to increased depression through the winter months. When March 20th came around I forced myself to start training, knowing I’d eventually regret it if I didn’t. I did my workouts 3 to 4 days a week out of a 5 day a week training schedule, which my more experienced friends told me was completely fine as long as I didn’t skip my longer distances. I stuck to the plan pretty well for the first eight and a half weeks.

On Thursday of week 9 I saw a new psychiatrist and started a new stimulant (as an adjunct to my antidepressant medication therapy) the next day. The following day (Saturday) I “accidentally” did a half marathon…during a thunderstorm, nonetheless. One might ask how one “accidentally” does a half marathon. Here’s how: I planned to go out for my scheduled 11 mile “long” training walk, the temperature felt good despite/because of rain on the horizon, I brought a rain poncho, I felt good, I kept going until I reached 13.11 miles according to my GPS watch in part because I was able to tune into my audiobook and just keep moving.

The next day (Sunday; day 3 on the new medication) was a MAJOR fundraising event for the non-profit organization I volunteer/work for and for which I was on the organizational committee. There was a ton of work leading up to the event and on the day of the event, but a big part of my job was sending out thank you letters as soon as possible after donations were made. I would only go into the office for a few hours at a time and get a bunch done because I was so intensely focused on the task at hand. I realized that I wasn’t doing my workouts while I was doing this fundraiser “wrap-up” and other social activities that happened to fall into this time frame, but I planned to get back on track as soon as possible.

My breaking point came when, on the 12th day of taking this medication, I started my day at 7am and had a schedule to do “work-related” stuff from 7am to 9pm almost straight through. I only ate half of my breakfast that day because I had no appetite before giving a presentation at 10am, no appetite after, and so much focus on my work after that I just forgot. I had cancelled one thing scheduled from 4pm to 6pm so I could do my workout during that time slot, but when I realized at 4:30 that all I’d had to eat all day up to that point was hash browns at 9am, I decided food was probably a safer idea than a workout. There would be not have been problem with stopping what I was doing at work, getting something to eat, and returning to my work. My boss strongly encourages taking care of myself and I’m not getting paid so it’s not like it would take money away from me or paid time away from my work. I was just so focused on what I was doing that I couldn’t force myself to take a break even to go to the restroom until it was almost too late or get a drink from our mini-fridge on the other side of the room until I was painfully thirsty. I could be either intensely focused or intensely distracted. No in between. Also during the 12 days I was on this medication, I spent almost $1,000 ($957.18 to be exact) on top of paying almost $700 ($698.43) on my “usual” bills, including my credit card which has been maxed out for 2 months. My impulse control was next to non-existent. This might also be a good time to disclose I’m on disability and am on a fixed income of just over $1,000 per month. I had a little extra money from a fender bender which I planned on using to get my car fixed and money in a savings account from my tax return. I pulled some over into my checking account when I realized I would have about $25 in my checking account after my remaining bills alone by the next time I got paid...in 22 days. The worst part: I had worked out 3 times in the 12 days I was on this medication and my half marathon was less than 2 weeks away from the last day I took it.

When I realized all of this it was all at once. It came crashing down on me like a ton of bricks. The realization that the catalyst was this new medication hit me even harder. I called my new psychiatrist the morning after connecting the dots (or rather the dots were connected for me by my boss). I stopped taking the medication immediately and started my old stimulant back up two days after stopping the new one. But I fell into a deep depression. Once I realized how much destruction I caused in my life in so short of a time, I just wanted to cry and sleep all the time. How was I going to get that money back? How was the lack of workouts going to affect my half marathon? Would I even be able to finish it? I couldn’t not try simply because of the time and money I had already invested into it, but failure was also not an option. I had no energy to get back into my workouts. My boss encouraged me take some time off to get myself back into a healthier place mentally and physically, but that had a significant negative impact on the office at a time where the boss herself was having a family issue and couldn’t be there.

I did get back to my workouts. Not as much as I would like to have, but I also could be at risk for overdoing it in the 11 days between stopping the new medication and my half marathon. I worked out 5 times in those 11 days.

This story does come with a happy ending. With the help of my three running groups, my closer running buddies, and my boss, who is also a mentor and friend, I finished my half marathon with a time of 3:59:31.60. Remember that the only goal was to finish before they closed the course after four and a half hours. I started out strong, but since the temperature got up to the mid-80s and it was very sunny with little shade on the course, I got so hot I felt like I couldn’t physically continue. The only things driving me were my friend who was meeting me at set points to refill my drink or help me cool off and my friends at the finish line waiting for me. My boss/mentor/friend sent me a text message saying she was waiting for me. I told her where I was when I was about a mile out, and her response was to remind me of sea turtles. Every move a sea turtle makes, though slow, has purpose and ultimately a lot of power, which is why she uses them to remind her of recovery and life in general. As far as the money goes, I was blessed by an angel of a friend who helped me with some money. Enough that I don’t have to worry about my checking account going into the red before my next pay day and was able to replace the money I took out of savings.

There is a rule in running: nothing new the day of a race. It can be extended into nothing new too close to the day of a race. I now know to take it out even further for myself: no new medications while seriously training for a race.

Due to my ongoing financial situation, I only registered for two races this year: my June half marathon and another in September, with goals of just finishing the June one, then finishing the September one a little quicker. I am scheduled to do my next - second official - half marathon on September 30, 2017. Here’s hoping for better temperatures and better mental health!

(Photo courtesy of Tina A. with backdrop by 131 Event Productions)

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