Sunday, June 5, 2011

Fibro update-ZZZZzzzzzzzzzzzzzzzzzz.............

I know, it's all about me lately. And food. And my crazy children. So, I will bless you all with some true Fibro complaining. There, satisfied?

I saw my Rheumatologist the other day, it went......ok. He was pleased that I did the things he wanted me to do:
  • Get a therapist
  • Get some Cymbalta
  • Lose some weight
  • Begin exercising
  • Do less
  • Prioritize
He was amazed I did as I was told. I was a bit surprised. Maybe because I got diagnosed quickly, didn't get the usual run around people that have been suffering for years get, but something in me made me do the things he said, give them a real try. Then, I could justifiably bitch when they didn't work.

But, they did work! My pain is truly low. I have pain every day. It's mild, though. And the accomodations I have made in my life have worked well.I have other issues, but the main thing-EXCRUCIATING PAIN, somewhat diminished. Woohoo!

He was pleased, and did his exam. He congratulated me on the efforts I put forth, and booked me for 6 months out, after approving the work for blood draws. And, I have to go to the sleep clinic. ICK.
The biggest problem this week is that I am exhausted. So so so tired. But not sleepy. I know I am not sleeping well, I know I don't get into that deep sleep that gives you a restful feeling. But, it's worse now. I feel drained. Truly depleted, and that is not like the old me. (And, I don't like the new me that can't go on overdrive for 12 straight hours. Shit HAS TO get done. By me.) Since I snore, he wants to have me sleep in some lab somewhere, with crap stuck all over me.  Cause that sounds like a restful night, right?
Grrr. And, if I have apnea, I would get one of those wonderful machines that hook to my head. So I can sleep better. I know, people do it all the time, but I HATE CHANGE. So it made me grumpy. And, he wouldn't do the blood work my acupuncturist wanted, so I gotta pay for that out of pocket. (Again, I DO know how lucky I am-I have coverage, and co-pays, instead of bill collectors and mounting debt.)

So even though each day sometimes brings something new to the table, I feel fairly fortunate. I have taken some amount of control over this whole thing, and I am doing well. We (my family) are in a good place, with lots of potential, and I get all this great time with my kids and husband. I am so very fortunate, and I recognize in this economy, that I am truly blessed to have what I have, and have things work out the way they have.

I have made SO MANY CHANGES in the past 5 months, I can't even begin to describe them all, and I think most of them have contributed to my feeling better. Some are easy, and each person needs to decide what they can and can't, will and won't do. Personally, I feel that a more holistic approach is critical for me. Before you do ANYTHING, talk to your team of doctors and decide what is right for you.But, my changes have, for the most part, worked for me. I feel better than I have in YEARS. YEARS!!! I dealt with another pain issue for 12 years (sciatica, and unrelated to current issues, so I know of which I speak.) But, except for the changes that I struggle with, I truly DO feel better. Just better in a different way.

I wish I could recommend what I have done to everyone-but I have a very unique situation. As the owner of a company, and a company full of wonderful people, I have the freedom (usually) to work very little. I was there 6 hours this week. It all went fine, and I am working on not worrying about what might happen if I am not there. Because the answer to that question is: the same shit that would happen if you were there.

So, I downsized my work. Because I could, but also, I just don't seem to have it in me. I still have the passion for what I do, just not the energy or inclination.

I gave up lots of food, mainly foods that seem to be pain triggers.

I exercise, to the best of my abilities. I feel better, and do have more energy when I exercise.

I slowed WAY down. I say no to just about everyone, and truly listen to my body over anyone else. And, it turns out my body has quite a loud voice, and that voice says, "Knock it the EFF OFF" to just about everything I contemplate taking on.

I have begun meditation. The connection between my mind and body is getting stronger, and I am more self-aware. I know, go sniff a daisy, save a baby seal. But, this has helped immensely as well.

Blogging-I have really embraced blogging, and have tried to help others. I know I am new to all this, but others are newer, and it helps me to help. I just have to listen to my body more, and do what I can at the moment, not all I can at the sacrifice of everything else.

The most important thing is relaxing. I have an amazing bed, but even my Sleep Number 7000 series Cal-King could not get me to do what my fibro has-lay around in bed, doing not much of anything. I know, many fibros CAN'T get out of bed. Or, maybe they are like me, and the don't wanna becomes the can't. Maybe my can't will get stronger. Then, I will have to deal with it. But for now, I think I am on to something. It is concerning a bit that I don't even WANT to get out of bed some days, but that is for the neurologist to puzzle out, not me.

I'm too tired.

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