So, we want to get better, right? Who doesn’t! Well, Jane McGonigal thinks she can help us. Check out her TEDTalk and let me know what you think.
Has it really been a year since I last wrote? I guess it has. At the time, I was a bit hopeful. Since then things have taken a turn negative turn. As I mentioned, my physical therapist and my neurologist both believe much of my pain and my migraines stem from Myofascial Pain Syndrome. I was doing physical therapy for it, but even with insurance, that is really too expensive to sustain. Massage also helps, but same problem. That is why the mainstay in my treatment plan for the past year has been muscle relaxers. I’ve fought against the idea of being chronically tied to muscle relaxers to treat my condition, but in the absence of any other solution that really works with my current budget… muscle relaxers it is.
With them I was down to a mere seven to eight days of horrible head aches per month… trust me, that is an improvement! But then I developed a chronic cough. First I thought it was my asthma. Sure, I know it had been years since I’d really had a problem, but… out came the albuterol and all of the other asthma related meds. But the cough persisted. Next step, antibiotics… but the cough persisted… a different inhaled medication… no help… a visit to a pulmonary specialist… and the verdict was… “there is no problem that we can see” – AH!!!!! I wanted to scream.
I went back to my GP, and he suggested that it might be silent reflux. Okay, so I go home and start reading up on that and guess what? It can be caused by taking muscle relaxers. Can you cue a loud scream right here? Since the cough had gotten so bad it was making it hard for me to do my job at work (and was often causing me to vomit), I decided to try to temporarally stop taking the muscle relaxers. Did this help… unfortunately it didn’t. Instead it just sent me into a tail spin. Now I am on week five of a head ache. The constant pain has me on edge. I’m depressed, irritable, and exhausted.
Headache (Photo credit: Lel4nd)
I had been lucky for a while. With physical therapy I’d seen my pain decrease. In November I recorded nine noteworthy attacks. In December it was down to five. In January I topped out at three, and I was over the moon! I was beginning to get my life back. Even the slight increase to five in February didn’t alarm me. I was seeing patterns, and I was beginning to plan how I could make my life work around my pain. However, in the United States medical care doesn’t come cheaply. You need time and money to pursue the kind of cure I was after, so in March I didn’t have physical therapy. I continued my exercises at home (as well as I could), my stretching, my Tai Chi. I used a tennis ball behind my back while driving to give myself automessage. I drank lots of water, and I was conscious of my posture, but it didn’t matter. In March I recorded ten days of noteworthy pain. And now, the first day of April, I sit here, fighting the fog that comes with the pain, trying to think, trying to write, trying to voice my frustration with the system.
You see, I work! I work a fulltime job specifically to make sure I have health insurance to help with medical expenses; nonetheless, even with the health insurance, there are costs. Oh, but the costs are worth it, right? Well, let’s think this through. I work to get health insurance, but my employer doesn’t cover the full cost of the insurance. I still have a portion of the premium deducted from each paycheck. Then, when I do get a treatment, I have to pay deductibles, copays, and other expenses. What does that mean? Well, it means that I am spending more than a third of what I earn just on physical therapy alone! Which makes me start thinking, would I need physical therapy as much if I didn’t work? Or if I worked part-time instead of full-time? Maybe not. Does that mean I should give up my job and try to rearrange my life to minimize my pain in ways that don’t involve expensive medications and treatments? That would mean basically organizing my whole life around my condition. It just doesn’t seem right. I’m working so hard, and I still cannot really afford the care that I need to make me the most productive person I could be. It is so frustrating.
The past week has not been a good one for me. I’ve had a headache on and off now for over a week. While it has frustrated me to suddenly be in the embrace of the Jabberwocky once more, what has been even harder is seeing how it has impacted my life. With pain I may be able to drive to work, to go through the motions of teaching a class, to prepare a test, to engage in small talk, but all of these things take so much more energy than they normally would! That means by the end of the day, when I reach my house, I don’t have much to give back to my husband. He prepares my dinner, he watches what is left of me as I eat my meal. We try to talk, but I am distracted and unengaged. My nerves are raw. I am fragile.
As hard as this is for me, I know it must also be hard for him. I know he agreed to “sickness and health”, but I don’t think this is the life he had in mind for us. I just wish I didn’t feel this way. I wish I were a healthier, happier, painfree version of myself. There are so many things I would do…
This morning I woke up with a dull pain on the right side of my head. All day it was there, at times stronger, at times weaker, but always there. I took my meds to stave off a monster headache, and it worked. It never got beyond a level two or three headache.
What does that mean? Well, it means that the “promise” of a horrible headache was haunting me all day, but it never materialized. I went about my normal duties for the most part ignoring my headache, all the while hoping that nothing I did would spur it on. It also means that I was exhausted all day! Between the added effort it took to work through the pain, and the fatiguing effect of the meds, I do believe I could curl up in bed an fall asleep right now (even though it is only 7:30 and I haven’t even had my dinner).
I was in a pretty foul mood most of the day either because of the pain or because of the meds, not sure which. And now I am sure I am back to feeling depressed and frustrated. I just wish I could be a normal person who doesn’t have to live her whole life around pain. But I guess, if you are here reading this, you know what I mean.
So, tonight I think I will look for some good articles on-line about depression and pain management. I’ll let you know what I find. Till tomorrow! Hope you are painfree!