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.

There are so many things…

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…

A new taxonomy for the Jabberwocky

After years of thinking I knew my Jabberwocky, I have recently learned that the Jabberwocky is not all together what I thought he was.  Oh, he is not completely different either, but some very important characteristics had somehow completely evaded me.  What? You are probably scratching your head, thinking I’ve taken too many meds today, but that isn’t it at all.  It is just that the past few months have allowed me to see the Jabberwocky in a new light.  Now I know that my migraines are just part of a larger problem, and armed with this new knowledge, I hope to be able to confront my foe with more success.

So, you may ask, what is the larger problem that has been contributing to my migraines? Well, it seems that I have myofascial pain syndrome.  I still can’t explain what that means with much eloquence, but I can tell you that it is kind of like having the feeling you get when you sleep wrong in at least one part of your body most days.  One day you may have pain in your hip. Another day it might be your elbow.  Your neck, your shoulder, your back, your knee. Some days it may be just a mild annoyance in one part of your body. Another day it may be a searing pain in most of your muscles. You might wake up feeling fine and slip into the pain halfway through the day, or you might wake in the middle of the night with it. You just never know when it will creep up on you.  The worst part, you don’t know when the pain is cause for alarm and when you should ignore it. For the most part, if I can’t remember doing something to cause the pain, I assume it will eventually pass. I’ve been doing this most of my life.

Okay, this is where you say: “If you have had the pain for that long, why are you just now realizing that you have this condition?” Well, that is an easy one.  You see, this condition runs in families. My mom had it, and I suspect her mother had it, too.  When I would complain of a pain, my mother would ignore me or tell me that it was normal, so I just learned that the pain was something to endure. Part of enduring it has been adopting postures that reduce the pain. Very often this has meant adopting very bad posture.  It is this response to the pain throughout my body that has, in part, been responsible for my migraines.

So, now that I have this insight, what am I doing to bring about a change? Ah, that sounds like a good topic for my next entry.  Till then, hope you are pain free!

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?

Thanksgiving…

It seems I survived my trial run for the big holiday.  Thanksgiving has come and gone, so I thought I would report in and let you know how I did during the mini-break.

Out of five days, I was down with the Jabberwocky (my headaches) for two.  Fortunately the two days were at the beginning of the holiday, so I was able to relax and rest up before having to head back to work.  I’m not sure about the trigger this time, but since it came at the beginning of the holiday, before I’d thrown my normal routine out the window, I’m guessing it had something to do with the stress leading up to the break.  I was trying very hard to finish up projects at work, so I’d be able to take a complete break from my job.  That means the last two days were pretty intense.  The good news is that I was able to shake the pain before the end of the day on Thursday, and it didn’t come back! Yippee!

While my eating habits were completely forgotten during the vacation, I did try to stay relatively close to my normal sleeping patterns. I watched the clock and made sure I didn’t stay up more than an hour past my normal workday bedtime, and in the morning I got up about two hours later than normal. I know, it isn’t perfect, but it is better than what I normally do when I’m on vacation – staying up two or three hours later than normal and then sleeping four to five hours later in the morning.  There was some pouting on the part of some family members who wanted me to stay up and play a bit longer, but all in all, I found that the rest of the family supported me.

Saying hello to the holidays…

The holidays are here and that is enough to make a normal person have a headache, so I am trying to make a plan of action to allow me to enjoy the holidays with as little pain as possible. That is going to take some discipline on my part and some understanding on the part of the people around me.

First, I’ve noticed that varying my sleeping and eating habits can bring on a headache. This can be a big problem during the holidays because the normal routine flies out the window.  I suddenly find myself staying up later, waking up later, eating at odd times, and even what I am eating changes.  Sure, I can forgo the late night game of scrabble, but will I be able to fall asleep while the rest of the family is playing in the next room? And how do I explain that I am not just being difficult when I insist on eating a small lunch at 12 when we are planning to have a huge meal at 2? Oh, and then there is the issue of what I’m eating. It is so easy to offend or hurt people’s feelings if you don’t eat what is offered to you.

So, how am I going to deal with this? I plan to spend the next few weeks trying to prepare myself. If you have any suggestions, they are welcome!

http://scopeblog.stanford.edu/2011/11/managing-headache-disorders-during-the-holidays/