Saturday, January 31, 2009

What I Take Everyday- ooh, exciting

I thought It'd be a good idea to list what I'm taking and why. I'm not just on guai right now, and even though the guai is the only thing that I think can clear out the phosphates, there are some other things I'm taking that are helping as well. I hope to eventually only be taking the guai, but I know it'll take a while to get to that point. There are worse things, like not being able to get up in the morning.

-Guai, 600 mg- 2x/day... No doctor prescribed this; this is why I have this website.
-DHEA, 5 mg- 1x/am... Fibro doctor; natural steroid hormone to help me balance out. I'm about to go through menopause at 36 (grandmother did it at 29!). This is not a fibro symptom, and I can't remember if she was giving it to me for that or another reason. Hot flashes, by the way, do balance out my fibro-induced cold sensitivity nicely, I've found. lol.
-Gamma Grow- 2x/day... Fibro doctor; hormone that helps the body rely less on carbs. I suspect this helps the vast number of fibro people who have hypoglycemia.
-Pregnenolone, 100mg- 1x/pm... Fibro doctor; It helps the body produce hormones.
-Armour Thyroid, 90mg- 1x/am... Fibro doctor; I produce thyroid, but I don't absorb it right. This is trying to train my body to reabsorb it the correct way/path. I understand it but I don't want to write the dissertation it would take to explain it.
-Cortef, 2.5mg- 3x/day (or my version which ends up being 5mg/am, 2.5/pm)... Fibro doctor; treats endoctrine disorder and immunity issues.
-Cymbalta, 30mg- 1x/day... Primary doctor; for depression with pain. It does nothing for my pain whatsoever. Depression is another thing many fibro patients have, plus it runs in my family. I get in a dysthymic mood occasionally, but I'm way past my catatonic depression. I think if my life's trials would ease up, as I'm in a constant state of stress (think: meerkat), this would even go away- I don't want to go into that, but it's not perceived stress; it's just that I've had one big test from God for a long period and apparently I still haven't passed, so it just keeps going. I'm getting better at dealing with it with a good attitude though. I've been able to help so many others with depression, though, that it's hard to complain about what I've gone through myself. Rambling... sorry.
-Vitamin B Complex- 1x/am... Fibro doctor; most vile smell on the face of the planet; I gag just thinking about it like a big baby, but I take it anyway.
-Klonopin, .5mg- 1x/pm... Fibro doctor; this is one of my more interesting symptoms, and I didn't realize it was happening. Fibro patients (I keep wanting to say fibroids... not right) waver all night from REM proper sleep to full brain activity in the night, like as if we are awake. The result is we're always tired. It was one of the first clues that made me think my daughter has fibro- she is never rested in the morning. (I'm getting her blood tested next week- nip the symptoms now and save her a lot of trouble later). Klonopin is essentially an anti-anxiety but apparently helps keep me from the full brain activity at night. It doesn't feel powerful like Tylenol PM, but I can tell that it has made a difference. I got our primary to give it to Brooklyn as soon as I realized it was helping me.
Chromium Picolinate - 1x/am... No one told me to take this; it helps balance blood sugar, so I take it on my own. I do a great job balancing my food, but anything that will help avoid a crash is good. If you've ever watched Steel Magnolias- a crash feels exactly like the scene in the beauty parlor. I almost never get a food-induced crash anymore. Once in a while, I go too long, but I usually see it coming and get some protein in me in time. Stress is the one thing that catches me off guard and causes me to crash. I don't always see that coming. Brooklyn started having this now- I gave her every blessed bad gene I have- and I'm teaching her how to eat, how to listen to her body, and how to recognize when she's starting to or in the middle of a crash.
Tramadol- up to 2x/day... Excellent pain killer. Nothing else works for the kind of pain fibro causes (for me). It also helps me not walk like Frankenstein, but I don't think it is really a muscle relaxant. I know it's a controlled substance, because I got it filled when we were in Vegas, and they wouldn't let us transfer it back to FW-that was a pain. I usually need one when I first wake up before I get out of bed, but some days I don't need it at all. In the fall, I needed it constantly, and when I started the guai in December, it didn't even always help. I felt like I had vampire venom in my body and couldn't do anything about it (Twilight reference :) ).
Mobic- A lot, but only a couple days a month... Primary doctor; a fibro symptom I could do without is crippling menstrual cramps. Like, heavy duty drugs like Codeine and Darvocet won't even touch them. (vampire venom... it is a good analogy, really). I was relieved to find out this was a symptom, because my primary and gyno couldn't figure out why I had such bad pain. I'm not much of a wuss either, but it's like labor for two days every month. Anyway, I had a slipped disc in my neck from a car accident and was given mobic. It didn't really help my neck, sadly, but I found out by accident that it is awesome for my cramps- I have to overdose slightly to function- shhh!- but it is awesome. I went back to my primary and told him to write this down and tell all his women patients about it. He probably thinks I'm nuts, but I've been going to him for so long, it was inevitible.

So, it's a bit ridiculous all I'm taking, but it's helping, so whatever. And really, eventually I will be down to the guai and vitamins, so it's not masking the problem, it's improving it. I think I've gone on enough for one day, anyway.

Wednesday, January 28, 2009

Cold Weather Hurts

The metroplex is essentially frozen over. UTA has been closed down for two days, Brooklyn's home today again, too. I'm not even going outside, and I hurt from it. It makes me wonder if moving to Cedar City, like I had planned, is a good idea. I don't know if it is the cold or the abrupt changes that is causing the problem. We don't usually have this kind of weather in Texas. The ache, for me, is in my neck and shoulders, hands... those are the worst. Then in my arms and thighs sometimes and lower back. This week, I have a new pain in my left shoulder blade. It feels like it's stuck. I don't know how else to explain it. Sigh... I sound like an old lady. The weirdest thing is that there are traveling pains, so I'll wake up and have a terrible pain in an odd spot like my knee, but then the next day it will be gone. Dr. Amand explains that the body can't quite catch up with the phospates moving around (I think that's correct), so they move around trying to avoid capture, as I see it.
A friend of mine who shares my office at UTA is in her early 40's has had cancer- 2 types at the same time, in fact. She went through all last year with treatments, had something inserted into her side so she could have portable cancer treatments. She never quit school or teaching, and knowing her, still got better grades than anyone else- I know she passed Old English, which is supposed to be impossible the first time you take it. Now, her heart is damaged by the chemo, and she may have to get a pacemaker put in. She's a powerhouse and a wonderful example of perserverence. But, when she heard I had fibro, she said, essentially, "Wow, I don't know how you do school and teaching with that." I was so dumbfounded. Next time I see her, I am going to tell her, "Are you kidding me?!!" I guess it goes to show that the trials we are each given are the ones we each can deal with. I'm not thrilled with the fibro but I see it as an inconvenience and something to try to conquer as much as possible. There are so many worse things to me.

Friday, January 23, 2009

First Good Cycle

I have been feeling decent for days now. That's amazing. I think it's my first good cycle. I did have a migraine or something like it a couple of nights ago, but I'm not sure why I had it, if it's related. My distance learning class fell through, so I started teaching on campus on Wednesday and working 10 hours at the eCreate Lab on campus (English Dept. tech lab). I'm a bit tired, but functioning. My brain fog is only sporadic right now, and I'm not always thinking about my body like I am when I am in constant pain.

I am also eating in the Zone. I read Entering the Zone. I was very impressed. It has kept my cravings under control, is a reasonable, balanced, and sustainable way of eating that also helps with my blood sugar and weight.

Sunday, January 18, 2009

About a Month Now

I decided to try not to blog so often. It's too much; if I'm annoying myself, I'm probably annoying you. Today, I slept until about 10, then laid there for an hour, but then I got up and showered, straightened up the bedroom (the realtor came with someone in the afternoon) and went to all 3 church meetings. Then, we dropped my daughter off at her friend's and hung out for a half an hour. That is a long day for me usually, but I feel pretty good. I may even to Wii Fit in a bit. I'm hoping it is the start of a reprieve, my first "good cycle". If it is, I would be eternally grateful (not really exaggerating), because I start school and teaching on Wednesday and have been dreading it more than I have any semester so far. I'm terrified of failing my MA exams or not getting something done I need to. In 19 weeks I have so much that needs to be done, but I can't count on my body to do what I need it to, and the more I stress about it, the more likely it is that I will have a flare. I have a powder vitamin mix the Fibro doctor wants me to take. It's the only thing I have been rebellious about- I am such a gagger with the pills alone. But, I think I need to find a way to just chug it every day. Maybe it will help my energy.

One thing I learned is that I don't absorb water well. I always thought that, but until I went to the fibro center, I had no proof. When I drink, it goes almost immediately through me. I got a scale that measures hydration. It says I'm 37% hydrated every time I step on. Now, I don't know what I should be, but that seems low. I don't drink 8 glasses of water a day, but I do drink quite a bit. I should do one day forcing 8 glasses just to see if it changes the percent.

I just looked up what it should be:
"it says on my chart that if you're lean it should be more than 62.6%, if you are slender then it should be between 62.2 and 57.9%, if you are fit it should be between 57.8 and 52.6%, if you are plump then it should be between 52.5 and 48.2% and if you are fat it should be less than 48.2%."

Right now I am plump, but it still seems too far under the right number. I lost a little so far, but I hope my week stays like today so I can get some good exercise in.

Saturday, January 10, 2009

Forgive Me If, No, When I Repeat Myself

Brain fog, as it is called, sounds like a bunch of balogna, but it is real and really difficult. This week, I've had the attention span of 2-5 minutes at a time- things just fall out of my head after that. It's more like trying to see something through fog. Right now, I can kind of see my hand, but I'm not always sure what it is called. Anyway, I'm bound to repeat things I think I'm having as a new thought.

I'm starting to realize how many things were misdiagnosed. I thought I have had arthritis in my hands for years, but a blood test shows I don't; it's just where most of my pain likes to hang out- phospates or whatever. I have lower back pain a lot. I'm wondering if some of it is fibro. I was told once that scoliosis doesn't hurt, but my back always has. Not sure.

I've had a real Frankenstein week- just watch me walk. The stiffness has just been hard to relieve and I have pain in my knees, which is new. I'm glad I can laugh about it. I have a very good attitude about it- even though I list my complaints here, I'm doing it more for a record than for complaining. I am really worried, though, about how this last semester will go. My boss is giving me a 5 week distance ed class to teach instead of my regular class to help out, so I still fulfill my obligation to my assistantship but I can come to campus less. I don't know all the details, but I do know I don't start teaching until April 6th! I still have other obligations, but that will help a lot!

Thursday, January 8, 2009

So Now What?

So, I'm in a lot of pain and fatigued. I cleaned out my cabinets of all non-guai friendly products- there were a lot! It was kind of nice to get rid of so much junk. Anyway, I looked up this morning what to expect next. One thing it said was to map the tender points and lumps that go along with fibro. I forgot to do that. My fibro doctor did the 18 tender points check, but not a full mapping. I will have Darin do a map of either my whole body or at least my left thigh, which apparently is the number one place to check for problems. When there are phosphates present, there is calcium present, so excess of phosphates causes excess of calcium. Calcium causes the muscles to flex, so fibromyalgics are often in a constant state of flexion, which causes flu-like achiness all the time. Touching those muscles hurts! When my doctor did the tender points, she applied a bit of pressure to them; I almost jumped out of my skin on a few of them. Anyway, for whatever reason, the left thigh is always affected, and so mapping the changes on that thigh over time is the easiest way to see initial improvement. It can take a month before noticing a difference, though. Blech. One person in the What Your Doctor May Not... book said that the best thing to do is not worry about it, just live and try not to think too much about it but trust that if it worked for others, it will work for me, and that one day, I'll notice I'm improving. I'm trying to do that, but it's hard with school looming in a couple of weeks.

Tuesday, January 6, 2009

Sleeping and the Toxic Headache

I cannot get over how much I have been sleeping. It is really annoying on one hand, but I'm infinitely grateful that I have the time off to do so, which is why I decided to start this experiment during the break to begin with. My favorite thing is my C-pillow that I bought once I was diagnosed. It makes an enormous difference in how I sleep. I am really not sure why, other than the fact that it prevents body parts from stretching too much in my sleep. As far as toxic headaches go, that is my own label for a headache that feels like there is poison in my brain as opposed to other types of headaches I've had. Tylenol and Excedrin don't seem to help- I just have to wait them out. The first time I had one was when I got an IV at the Fibro and Fatigue Center. They put something in it that helps get rid of toxins. Each time I got one, the next day, I had a whopper toxic headache, blech. I am hoping the fact that I've gotten one the last two days means the guai is trying to get rid of some junk in my system.

Friday, January 2, 2009

New Year

Brooklyn and I traveled home from Vegas today. I had to get up by 9, which lately, has been impossible- 11 has been early for me for about the last three weeks. I packed and traveled with Brooklyn alone, which means I had to carry heavy luggage, and we had to get off one plane and onto another. So, I was super worried if I could handle all that, but it wasn't too bad. Hopefully, I won't be in agony tomorrow. When we traveled to Vegas, I suffered the entire next day.