Like an onion…

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.

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Sadly…

Headache

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.

Physical Therapy Frustration

Today I am going to take a break from my prep for Christmas to vent a little bit about some thing that has been bothering me.  I started going to physical therapy a few weeks ago as the latest step in my treatment plan.  I asked around, and actually found a very capable/knowledgable physical therapist.  When I went to my first session, I left exhilerated.  I thought, “Wow! This may actually be what I have been waiting for all these years! A normal life may be in reach!”

When I arrived for my third appointment, my therapist told me I was making fantastic progress! I could definitely feel a difference, and it was beginning to show in my moods and my energy levels.  Then, on the forth day, I had to see another therapist. I tried to remain open minded.  I wanted to give her a fair chance, but I quickly realized she didn’t really know what to do with me.  She spent about 10 minutes of my 30 minute session out of the room, consulting with my original therapist. I was annoyed to be paying for wasted time, but I talked myself down saying she just needed to familiarize herself with my case, but my next session was with her again.  It wasn’t any better.

By this point I was growing increasingly frustrated.  I could see that my sessions with the original therapist were on a completely different level, and this was confirmed on my next visit when I was lucky enough to work with her again.

Well, today it got even worse.  I arrived, and I saw a completely new therapist! He wasn’t familiar with my case or my treatment plan. He didn’t really seem to know what to do with me.  I felt like I was just throwing my money away.

So, I am very unhappy.  I can see that therapy with a knowledgable therapist can work, but I don’t think I will make the same progress if they keep passing me around.  When I am with the other therapists I feel like I am treading water.  We are doing things to help me not slip backwards, but I’m not moving forward.  When I’m with my original therapist I feel like I am moving towards normality.  If I were not paying for the sessions I wouldn’t mind treading water.  I am a patient person.  I’ve had the headaches for thirty years. I can deal with a slow improvement. BUT when I am paying for the treatments, I want to get what I am paying for!

Any suggestions?