sunday, bad to good and in-between

posted on 23 August 2009

Because of the day I’ve had today, I figure this is as good a time as any to tell you about my…

Migraines, arthritis, fibromyalgia, chronic fatigue syndrome and all the rest.

Today didn’t start out very good for me. I was fine when I got up at 5am to let Brandi out for her early morning doggie duties. Once she was done, I crawled back into bed, but twenty minutes later, boom! Migraine. I’m so tired of hurting all the time. Of course there’s more to the hurting than just the migraines… like the arthritis, fibromyalgia, chronic fatigue. My doctor a few months ago termed my migraines as “transformed.” I found an excellent definition of what that means on the Health Central website:

“Transformed Migraine (TM) is migraine which began manifesting in episodic migraine attacks, increasing in frequency and changing characteristics, and resulting in almost daily less severe headaches punctuated by severe and debilitating migraine attacks.”

Wow. Did they interview me at some point? Really, that’s me. Couldn’t have said it better myself. I’ve lived with the basic migraines all my life. Yes, you read that correctly: all my life. For many years, probably at least a couple decades or more now, the pain has been a constant. I wake up with pain, I go to sleep with pain. There are worse days than others. I’m talking pain so chronically debilitating my husband thinks I’m in a coma. The doctors and I figured out a few years ago that that the “blanks” I have in my memory of things in my life, in the past, are when I’ve had those severe attacks. I’ve told my kids and our parents, even if I’m able to talk on the phone during a severe migraine, don’t tell me anything important… I won’t remember. And the past couple years, as the migraines have “transformed,” the severe episodes, as in the statement above, have gotten worse. The only difference between what is quoted above and me is that my daily pain has stayed the same – no less, no worse, just constant as always.

I’ve been through all the food and other trigger diaries, tried every migraine medicine available up to this point, had a couple MRIs, and a slew of blood tests and other things done over the course of my lifetime. There seems to be no obvious reason for me to have these awful migraines. The past few years the doctors have had me trying other types of medicines that have been found to help migraine sufferers. Most make no difference. One gave me palsy-like tremors. Two made me gain weight. One put me into a deeper depression than what I live with. And several made me so loopy I felt like I was living in lalaland. Ugh.

I’ve been blessed to have found, finally a few months ago, a doctor who doesn’t think it’s “all in my head.” She’s awesome. We’ve talked, in detail (something other doctors have not done with me), about a whole slew of other types of medicines available, not necessarily for migraines, but that could help. Right now I’m waiting on a medicine to come in through the MAP (medication assistance program) so I can try it.

Migraines can be the cause of a body going through so many other things, or making other health and medical problems more pronounced. Migraine sufferers are more prone to strokes. Because of my migraines, I’m a chronic insomniac. My sleep is not true sleep; I’m always “aware.” It takes me forever to get to sleep, and that’s no matter when I go to bed, or what I do to try to make myself tired. I have arthritis so bad nowadays I can barely move sometimes. I can’t take the normal ibuprofen and things like that as they really cause all sorts of stomach problems for me, so I take Celebrex. It works decently enough to take the edge off, and the benefits for me far outweigh the risks. The new medicine I’m waitng on is supposed to also help with the arthritis also, we hope.

The doctor recently did some tests on me and now I have two new diagnosis on top of the rest: fibromyalgia and chronic fatigue syndrome.

I hurt all over.

I’m sorry, let me repeat that…

I. HURT. ALL. OVER. PERIOD.

That’s the fibromyalgia. Yes, it hurts like all get-out when someone touches me. But I love my husband, my kids, my grandkids, our parents, friends…. so I hug them and hold them.  Somehow, when I do hug them, it relieves a bit of my pain. Except for Jerry, probably no one else has any idea how bad my body aches and hurts day in and day out. Oh, they all understand and know what I go through with the migraines, yes, of course. But the total body pain, they might not know so much about it.

And then there’s the dragging myself through each day. Literally. I’m so freaking tired every minute of every hour… and I continually pray to God to give me the strength to make my body and my mind claw through the necessary tasks of daily living, caring for Jerry and his recuperations from 3 surgeries in the past year (not to mention the unrelated medical problem he’s been living with since 1994 and also lives with chronic pain), handling all the household stuff… blah, blah, blah. This is the chronic fatigue syndrome.

I never used to complain about anything. But this is what pain does to you. It kills your mind and your body and sucks the life out of your soul. It’s all you think about. I’m so tired of always being in pain. I’m tired of being tired.

And that’s what I live with. But I have God. If not for my faith in God and having Jesus as my Savior, I know there’s no way that I could live with all of this. In spite of myself and the health stuff, I’m okay. I have a sweet, loving husband, kids, grandkids and our parents.

So, should days, or even weeks, go by between posts, emails and the like, these things will likely be the reasons why.

Thanks for listening. G’night.