Advice from Abroad

A friend sent me this the other day; it helped me because I'm on the lower part of the cycle, which makes me wonder if it's working:

We have to remember that reversing on Guaifenesin is exactly what it says: it's
reversing out of one's symptoms. For most of us, it was hard to accumulate those
symptoms through the depositing processes of Fibromyalgia and it can be hard to
get rid of those deposits through the clearing cycles of the protocol. This can
seem counter-intuitive for a treatment, as we expect treatment to control our
condition and make us feel better.

With the Guaifenesin protocol we are not clear until we are clear, until ALL
deposits are gone. Before this has happened, however long it takes, we can
expect some trouble from cycling. However, cycling takes place in many locations
throughout the system in the early days, with widespread difficulties. Later,
there will be fewer places to clear and trouble can become more localised so
that, overall, we have less difficulty to face on a day-to-day basis.

Sometimes it's better to look not at how one feels, as we may be in a difficult
cycle, but at what we can do. These days I have to refer to my symptom diaries
to see how incapacitated I was in the early days - I've simply forgotten. Some
of my symptoms are now history. We will always be Fibromyalgics (unless they
come up with a genetic 'patch' to put us right), but we don't have to have
fibromyalgic symptoms. Over these seven and a half years I have read millions of
words of people's accounts of their symptoms and their routes out of those
symptoms on Guai. Many people have now reversed out fully and don't have
Fibromyalgic symptoms. For some there may be some physical damage left;
osteoarthritis in advanced cases; for me I'm not sure that contracted
fibromyalgic tendons in my arms damaged by work will ever be perfect, but
everything else I expect to normalise when I am fully clear.

Claudia would be a good example. She is someone who has one or two non-fibro
related conditions, just as many of us do (not everything is Fibromyalgia),
which she has to cope with. She was a very slow responder and had to watch
others who were faster responders overtake her on the road to recovery.
Eventually she cleared fully and, quite simply, one couldn't tell that she's a
Fibromyalgic. She's a powerhouse of energy, manages family commitments, Dr St.
Amand's office along with Gloria, edits the newsletter, co-authors the books,
writes her own books, attends support groups and seminars, travels all over the
place.

This is what we have waiting for us at the end but, as I say, we are not clear
until we are clear. The big difference on the protocol is that, each tablet we
take, we are getting one step closer whereas, before, we were always getting
worse. Our mitochondria are now gradually clearing. If we can exercise and keep
taking the Guai, then each new mitochondria we make will always be clear.

I sometimes think that, for each of us reversing, there is a finite amount of
suffering we have to go through to get clear. If we put off being on the
protocol, or take a rest from Guai, or get sloppy with products and block, then
that amount of suffering is still waiting for us when we get back on track. But
it IS FINITE. If we are not reversing on the protocol, then the amount of
suffering is INFINITE. That's the difference.


Regards, Peter W, 44, 1200mg LA + 400mg FA, Guai from Jan' 2002, HG Diet
(Liberal)
UK-FMS-GUAI Admin Team

When I Don't Check In

I guess it's like the tendency to not pray when things are going well... well, kind of anyway. I realize on good days I don't think to check in, and a good day is wide-ranging, so I don't know what all the missing days are like based on this blog. At the same time, I don't want to write in every day; that is a bit boring, tedious, and space-consuming. A good day for me may mean I can take Beam to school or need Darin to, but I can go to work and pick her up and go to class (the mornings always seem hard). It can mean that I'm pain-free enough to not take anything, or it may mean I take one or two tramadols that day. It may mean that the tramadol gets rid of all the pain, or all of it except for the pain in my hands. Some days I can walk up and down stairs on campus and move fairly quickly. Some days, I have to use the elevator both going up and down (of course, my backback weighs 20 lbs.) Sometimes at the end of the day, I'm thinking clearly and get some work done. Some days I just fall asleep once I get home or at least my brain is too tired to be productive. But, if I'm not stuck in bed all day, it's a pretty good day. I did, on Wednesday, have to skip class and go home to bed, I was so tired, so that wasn't good, but I was asleep so forgot to record it :)

Great News

My daughter went to the Fibro Center today. She does not have Fibro, and I am so thrilled. I was so worried about her having to deal with this. She did get a bunch of blood taken to see exactly what is going on, but it will be a month before that gets back. But, she thinks her adrenal system is sluggish. That's fixable!

Added Meds

I had an appt. today. She added Melatonin to regulate my ability to get to sleep, since it helps control circadian rhythms and Progesterone to try to alleviate menstrual cramps. She also added iron that she thought she had already given me.

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.

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.

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.