Fibromyalgia and Me: A Semi-Concise Retrospective, Part 3 of 3.

Year 6. 2010.

I've been blogging about my Fibromyalgia and the rest of my life now for a few years. Oddly there are quite a few people who find me by Googling "how long does it take to withdraw from Fentanyl?" I pray for them, knowing the awful depths withdrawal can drag you. Some of them write me to say “the doctor never told me what this would be like” and I try to encourage them that yes, it’s awful, but you can make it through this.

I know I am still relying too much on ibuprofen and Vicodin--I'm afraid to be in pain. And the Cymbalta I use for the Fibromyalgia seems to no longer help with the pain and all I'm having of it are the side-effects.

I spend the last half of the year clearing my body and brain of any extra medications: the Cymbalta is reduced to the lowest dose (with the blessings of my doctor) and I'm no longer taking my everyday dose of allergy medication since I feel foggy in the brain already. I figure I'll deal with the allergies as they come, and enjoy the clearer head I'll have without the pills. I pretty much quit taking the ibuprofen as it seems to begin eating a hole in my belly after a time. The Vicodin I will use when I really need it. No more preventative pain medications, just "as needed."

Year 7. 2011.

I can read books again!! After collecting books and books since I love to read and simply haven't had the concentration to do so, I'm working my way through the book piles. This is a happy thing.
I also decide that in a year the same amount of days will have passed no matter what I do with them, so what if I step out with a small amount of faith and choose to do something positive for myself with those days?

In mid-February I pull out the business card of a Naturopathic Doctor, given me by a friend a couple of years ago, and make the call. Set up an appointment. And the same week I get an appointment at the gym to talk with a trainer to help me exercise right and not cause flares or injuries that I know would just make me whine and quit. My Get-Well money is in play now.

It's June now. I'm taking steps toward a healthier, less whiney me. Sure, I get frustrated that things aren't moving faster. I still hurt, but it's generally lower, midrange, on the pain scale, the one where 10 means "please hospitalize me or at least shoot me with rhinoceros tranquilizer darts."
I try to deep breathe, I try to still my mind. I wake up better in the morning, but truth is, I'll never be a true morning person.  I still find putting any sort of dinner on the table a pain in the arse since I’m not a big fan of cooking, but not in the same “can’t lift my arms” sort of way.

It may be slow, but it is after all a process, something Merriam-Webster defines this way:
       Process
      1 a: progress, advance b: something going on: proceeding
     2 a (1): a natural phenomenon marked by gradual changes that lead toward a particular result     (2): a continuing natural or biological activity or function

So the fact that it is indeed something continuous, something that moves forward, is a happy thing, even if it isn’t instant. Fact is, I’m tired of this pain, tired of this fatigue, tired of this body. I can choose to stay the same, or I can choose to move forward.

I mean, why NOT me?


Skimmer's Recap: Fibromyalgia, while not my favorite companion, has taught me things. And baby steps are still steps.

Fibromyalgia and the Gym: Things I've Noticed Besides People in Spandex.

I have passed the three month mark in my Experiment In Fitness. I started back at the gym in mid-February, and started seeing a naturopathic doctor about the same time. My trainer at the gym has kept me from hurting myself and my naturopathic doctor has supplemented me toward better energy. These are the things I have noticed:

At the gym I can now add light hand weights to my routines. I have better control of the movements my trainer guides me through. I now have to warm up at a faster pace on the treadmill than I did originally in order to start moving my heartrate up, and I've upped my pace on the treadmill altogether from 3 miles an hour to 3.3 miles an hour and added an incline to keep my heartrate in the workout zone. Doesn't sound like much, but it's a change in the right direction, right?

I sleep better and on less medication than I needed for a night's sleep than before. I wake up less groggy. I am better able to do sustained activity than I was previously. I don't see a huge difference, but my dear hubby says it's significant.

Due probably to both supplements and exercise, my flares have been minimal. Where previously I could expect one week out of 4 to be extra fibro-achy and difficult, I've had only a few days in the whole 3 months. This to me, a whiner from way back, is huge. I think it may be even huge-er to my family.

I believe the supplements have supported my efforts toward the exercise, and the exercise is supporting my efforts to take better care of myself. Slowly but surely, forward steps are being taken and small results are being seen.

One reason I started this trip down Supplement-and-Exercise Lane was the thought: In a year from now, what could be different about my health and fibromyalgia? A year will pass one way or the other, so why not DO something?

I've had a number of people tell me that either they or a friend had fibromyalgia "and one day it just went away." I'm not sure if that is intended to encourage me (it doesn't, by the way) but rather than wait around and hope for a cure by The-Raw-Foods-Diet/Prayer/Misdiagnosis or Magic, it seemed prudent to take some steps of my own. And what do you know? The steps are moving me forward.

Where I felt "stuck" in the quicksand of this thing called Fibromyalgia, I'm feeling a bit more in control. What is your area of "stuck-ness"? What choices could you make to improve some part of your life that otherwise will be just the same a year from now?


Skimmer's Recap: Julie finds no magic in her past 3 months, just some serious acts of the will--but finds them oddly satisfying. However, she does not anticipate wearing spandex any time soon. Or ever.

One good thing about the flu...

Above: me as i looked, reclining in my sickbed wearing my tiara. i found this on Varifrank.com in a pretty funny blog post.

Well, after a week of eating an ounce at a time, i've lost 7 pounds. It was a lousy week, it was one of the roughest weeks i've had in recent history, but i lost 7 pounds. That part was good.

i was looking back at what i ate all week, and if i could just manage to eat about 600 calories every day for the rest of my life, maybe i could lose another 7. As opposed to my usual eating, not perfect but certainly a bit more than an ounce at a time, i could only manage to eat an apple and 7 Triscuits all day, then maybe a piece of toast for dinner. Amazing. Of course, i did manage some therapeutic chocolate here and there.

ANYway, this brought some other thoughts to my mind:

There are things i don't like about myself, like, i don't like my weight, i'm not crazy about my wrinkles, but i'm good with myself. Here at 50-odd years old (some much odder then others) i'm actually okay with who i am.

(This could be longish, so you Skimmers hang on for the recap.)

Wind back to January of 2001--my mother died of cancer in Nebraska, and i received the call in California. This call came from her lawyer, as she had not even told me her cancer had returned. Then the deluge of treasures started coming. Stuff like her hand-written will outlining her Replacement Loved Ones and the possessions she wished them to have. i was the only of her 3 birth children still in contact, she had alientated my sister and brother years before. So for me she saved her special comments, designed to make sure i knew i'd been a bitter disappointment to her. i, along with the lawyer and my aunt, received the long pages written to each of her children outlining the many specific ways we had each disappointed her and ruined her life. Then followed the albums of family photos and framed family pictures and such, each with sticky notes attached. These told me things such as "you children killed the mother I was" and other words to hold near and dear to my heart in her absence.

i went into a hysterical tailspin and became a Frequent Flyer at Kaiser's Mental Health and Chemical Dependency Clinic. i remember the first day i spoke with someone there. i was sobbing, "But why could she love those other people, and not me?" The nurse spoke of our expectations of our mothers--"We expect our mothers to love us, and protect us. That's a nurturing act--from here, to here," she said, gesturing from an adult height down to a child's height. "Those others she can relate to from here to here," she said, gesturing from an equal to an equal.

i knew my mother had replaced us with more acceptable children in her new and improved life in Nebraska, but i'd never understood. That day started a 5 year trip down Mental Health Road. A really valuable trip. A trip i hope never to need to repeat.

But from that day of a new beginning, i came from a place where i doubted every single thing about myself, even things i was sure of. i was pretty sure i was a good mom, a kind person, but if the person who is supposed to love you more than anyone in the world thinks you are a disappointment, it's hard for someone like me to know who to believe. But the nurse that first day told me, "You have a very good chance to have a great second half of your life."

i wanted to believe her, desperately. But i couldn't see a way to that place that day. And now seven years have passed. In that time i've been able to pull together the truths of who i am as a person before God. The things He's gifted me with, the person He's grown me into, the kind of woman i knew i was, i've been able to accept--i've learned to silence the voice of my mother that lived in my head. i was finally able to sort out what i knew of myself from what my mother had me believing. And i'm finally good with me. Not with everything about me, but with me.

But i'm still happy about the seven pounds.

Skimmer recap:
Mother. Cancer. Dead. Bad stuff. But now i'm good.

;-)

Adrenal eating.

Another thought that's been cruising around in my brain:

When the chiropractor gave me the results of the cortisol test, list of supplements, and recommendations for lifestyle changes, one of those changes was to be sure to eat protein if i had something high carb.

My thought: i can do this. Milk with my chocolate cake, peanut M&M's instead of plain.

Now, for tomorrow, the 24 hour pee collection. When i went to the lab to pick up my jug, imagine my surprise and amusement at being handed a rather large orange jug. The gal explained the procedure then said, "Keep it in the refrigerator." To which i replied, "--and be sure to tell my son it isn't orange juice."

i do amuse myself.

"If i only had a brain..."

Yesterday i had a unique experience. Because of the whole fibromyalgia-arthritis-hard to work thing i've had a couple of interesting doctor visits lately. Last week it was one where i got weighed and measured (why will they always take my word on my height, but not my weight?) and told to bend here and fold there....the young girl taking the measurements very delicately put her tape measure to my legs and arms (i apologized for not having shaved my legs, had i known i would be fondled about the calf and thigh i surely would have) and checked for matching/not matching sides of my body. The doctor then came in and spent his 2.5 minutes speaking with me, looked at my scoliosis in the lower spine, and told me he makes no decisions, he merely does the exam and gives the information to the Social Security people, and they decide.

Yesterday's appointment was much more entertaining (hard to imagine, i know) as it was a psychological evaluation. Did this have me nervous? But of course. Did it help that Mapquest has an odd sense of humor when laying out the route to an unknown doctor's office? Not really. But once i was there outside the office, shoving nickles and dimes into the parking meter, i steeled myself for the upcoming unknown evaluation.

The office was in a lovely old building in nearby Oakland. i let myself in to the suite's waiting room and was handed a clipboard with 6 or 7 sheets of questions. Some i could answer easily: "do you smoke? use drugs? feel like killing anybody?" But questions like, "what do you think is your main problem?" or "did you feed/bathe/dress yourself today?" begged for answers i felt i should probably NOT put down on a psychiatric evaluation. And yet, those questions barely prepared me for the battery of tests administered by the doctor herself. (And why is it called a "battery of tests"? Is it because you feel battered after taking them?)

i was feeling all pumped by the questions like "how are apples and oranges alike?" BOTH FRUITS! or "how are "cars and boats alike?" BOTH TRANSPORTATION! Maybe i can pass this test! Ah, but they got trickier as time went on: "how are flies and trees alike?" Uh, both alive and hopefully outside. "Why do we have a probation system?" HUH? "Name all the continents" "Who was president during the Civil War?" What are we testing?? Whether or not i was i asleep during history and geography classes???

And then came the evil *Numbers*.... "I am going to say a list of numbers, and you repeat them back to me." Numbers--never my favorite, and here they come to bite me in the backside-- "5. 8." Okay i can do this!! Then eventually, "6. 3. 5. 1. 9. 8. 3. 4." Um..(furrowed brow...) "And now I will give you a list of numbers and I want you to REPEAT THEM BACKWARDS TO ME." Now, nice Doctor Lady, if i couldn't repeat 8 numbers to you FORWARD, what makes you think i shouldn't just go out and get myself a candy bar and come back later?

And there were patterns to be copied made of blocks. Anybody familiar with "Flowers for Algernon," the story of a mentally handicapped person who has some experimental treatment or something and becomes brilliant, but then it wears off and they go back to where they started? Well, whether or not i just butchered that story, guess what part of the story i felt like? Yep, back to slow. And there were patterns to be copied in pencil. Cool. i'm all over that one--yes, i have copied the "Could You Be An Artist?" pictures from the ads-- "Now, I will take away the cards and your drawings--Now draw them from memory." Back to slooower.

By the end of the testing i was seriously questioning my ability to unlock my own car door, and i have one of those "push the button on the remote to unlock" thingies.

i did get myself home, though. But today i am not getting out of bed. Not sure if i can feed/bathe/dress myself anymore.