Sunday, June 28, 2009

The Days I Don't Blog

I would like to blog, or better really write. Failing that I wish while resting I could read. I spent an hour on hacking down weeds at the house where we're staying for now, and another on cooking meals, a half hour on paperwork, and that was all I had for today. Energy used, confusion descending, pain.

I would also like to swim, hike, dance, travel, go see you! Wish I could take a vacation from sickness.

If I have to be housebound the dream is to be like Laura Hillenbrand who wrote Seabiscuit despite ME and maybe someday I'll manage the disease well enough to write but now this little bit is all I have left squeezed from exhausted brain. She maybe had a lot of support. I should write about this sometime when I have a little more energy I guess. I want to explain sometime soon what it's like day after day, what I do if I'm doing "nothing."

Saturday, June 27, 2009

Oh Yeah, And Another Thing It Isn't!

When the acupuncturist looked over my chart and said, "Fibromylagia, huh?" I was thrown, but I knew he'd be using a different diagnostic system anyhow, so it didn't really matter what my diagnosis by Western terms might be.

Since it was on my chart, however, I gently mentioned it to my primary care doctor, an osteopath. Please excuse abbreviations: I had a character limit to work within so I kept it brief. (Bet you wish I had one of those on this blog!)

Dear Dr. Osteopath:
Acupuncturist said Fibromylagia; my understanding was diagnosis is Chronic Fatigue so wanted to check that.
Also learned that WHO uses term Myalgic Encephalomyelitis and under that term found information that seems possibly of help to me. I'd like to know what you think.
Some articles I can't access as they're in med jrnls that req subscriptions:
This definition seems to describe well what has happened to me and my son:
Life impacts worsening, trying to get disability and housing, able to work less since first saw you, trying to do as you said and adjust to lower levels of activity.
Wondering if these descriptions and possible tests might help me establish disability for benefits.
Starting Pain Management Aug 11, hope that will help.
Any thoughts will be much appreciated!


Her answer:

Dear Creek,
Many times people use fibromyalgia and chronic fatigue interchangeably.
Regarding tests, etc, I have never seen a need for them in order to verify disease for disability purposes.
Hope the pain management program is helpful.
Dr. Osteopath

Chronic Fatigue and Fibromyalgia the same??? And no response at all about Myalgic Encephalomyelitis.

Now, it is possible for a person to be cursed with both ME and Fibro, but I pray that's not the situation I face. What I was hoping for was a clarification of my diagnosis.

Further, I was hoping that she might run tests to confirm the fairly obvious ME diagnosis.

In my wildest dreams I hoped she might help me follow the protocol for care of ME.

What I got was more muddle. It's going to be a long haul educating doctors, or else maybe a move to Canada.

Oh, Canada!

What It Is and What It May Be

What it is, it still is, and that's Myalgic Encephalomyelitis. That's not some fancy long word to describe my illness, or a label with which doctors are trying to enslave me. If only the doctors would all accept that label!

Unfortunately the US CDC miscategorizes this illness as CFS. The WHO knows it as ME. US doctors are a bitch about accepting the WHO term, but here's info that makes it all clear:

The Australian treatment protocol:

The Canadian description:

This is the stuff I need to get to my doctors and my kid's doctors. Meanwhile, we get a lot of bad advice and mistreatment from the medical establishment with their well-meaning but misguided approach to "CFS."

That said, whatever else I may or may not be able to eat, it looks like I might have to eat my words, or at least the ones that say "it's not gluten." Upon reintroducing gluten to my diet I immediately became ill in ways you would rather I didn't describe, but for the sake of any other ME/possible celiac sufferers in the audience I'll tell you anyhow: severe stomach cramps and diarrhea.

It turns out this is a predictable reaction if you have gluten intolerance (celiac disease) and you accidentally eat gluten.

It also turns out that you have to be including wheat in your diet when you take the blood test for celiac disease, or the results may be thrown off. So now the plan is, I'll either continue eating wheat and retake the blood test, perhaps get an endoscopy to check for healthy cilla in my intestinal tissue, or else do both.

Anyone concerned about celiac disease can find excellent information at the Mayo Clinic's site:

But here's the thing: I might have celiac disease, and if so I'll go off gluten again and my cilla will regrow within three years max, but that doesn't take away the ME, alas. That's just another, aggravating condition on top of the ME. So we still can't say, "Maybe it's gluten," or, "what you've got could be candida." We can only say that the ME may be aggravated by the additional presence of other illnesses.

And that's all I was trying to say in my last installment, "What It Isn't." I was trying to ask people not to try to explain away what I've got, as something else. It's like telling a cancer patient who has a cold that once they get rid of that post-nasal drip they'll be all well. Certainly she'll feel more well and better able to cope with cancer when she hasn't got a cold, and I imagine I will feel more well and better able to cope with ME if I'm able to eliminate any other aggravating conditions.

Finally, again, this is the Western view of things, and indeed, a Chinese herbalist may be able to successfully treat me with a thoroughly different set of diagnostic terms. I'm looking forward to an opportunity to try that out, some day. Meanwhile I do have acupuncture to help support my system and reduce my symptoms, praise be.

My hope is to be embraced by both Western and Eastern systems and above all by my friends and family, as I continue to cope with and counter this condition, whatever it is and may be. Call it what you will, the upshot is that I'm taking in every bit of advice I can, acting on as much of it as is humanly possible, and doing so in the face of physical pain, cognitive impairment, generally good humor, but also occasional lapses into despair from which I need you, my loved ones, to drag me back whole. Hang on tight, please, and don't let go.

Thursday, June 25, 2009

What It Isn't

" there’s proof that inflammation occurs in the brain and there’s evidence that patients with this illness experience a level of disability that’s equal to that of patients with late-stage AIDS, patients undergoing chemotherapy, or patients with multiple sclerosis."

-Dr. Nancy Klimas, on Myalgic Encephalomyelitis (What it IS)

It isn't AIDS, cancer or MS, but sometimes I almost wish it were, because we would get more understanding if we had one of those higher-profile, more accepted diseases. There are still people who think that we with ME are not ill, or are ill with something else, something more real.

Would you say to an AIDS, cancer or MS victim, "it might be candida?" Probably not. Yet friends, family and even doctors have suggested that what my 15-year-old and I are suffering from might be a panoply of other illnesses.

Today we got test results back. It's not celiac disease. The gluten-free diet suggested by the rheumatologist, followed faithfully despite cost in time and money for two and a half months, has been worthless.

We baked with gluten-free flour, went out of our way to find other gluten-free products, turned down the free pasta and bread that were offered to us although we don't make it through much more than a week on what food stamps provide. We turned down all those wheaty oaty ryed-up treats and I brought gluten-free muffins to a potluck. It didn't make us feel any better, except that I was pleased that the celiacs present were so glad for the muffins.

Doing without gluten was not making us a bit more well, but I heard that it can take many months so we stuck it out. I learned at last through my own research that there's a test for celiac disease, which is the intolerance of gluten that torments so many people. So I asked the doctor for that test.

Today, the test came out negative. Going wheat-rye-oat-free was an education and it made me sensitive to the plight of those who can't digest gluten---I'll bring them those muffins again---but what a waste of our time and money, Dr. Rheumatologist. Why didn't you tell us about the test?

It's a relief to be able to eat cheap, yummy pasta again, but it would actually have been more of a relief if indeed going without gluten had relieved any of our symptoms. But Celiac Disease is what it isn't.

Now listen.

It isn't candida either, or mold or allergies or sinuses or depression or any of the other things that have been suggested by kind, well-meaning people who hear that we are ill and long to solve our problems. Believe me, I understand the impulse. I've researched so many things it might have been, since long before we got diagnoses.

It's ME. We know that, and it's hard enough for us to accept it, but we have to. So please, you accept it too, and stop looking for other causes for a very clear presentation of this very real disease.

Granted, we could develop any of those other problems on top of ME. An already-present propensity could flower in the presence of ME, or our weakened immune systems could allow us to succumb to something we had no problem with before. Just like last week, when I had that awful cold on top of ME, yes: ME or MS or cancer or AIDS patients can all get sick with other things in addition to their chronic illnesses. But to blame our chronic illness itself on anything other than ME is denial and it won't help us get better or bring anyone any closer to treatments or a cure for ME.

Know this.

What it is, is Myalgic Encephalomyelitis.
We feel pain almost always.
Our circulating blood volume is low and our hearts are working extra-hard to compensate.
Because of that cardiac stress, exercise is NOT indicated. It makes us feel far worse.
We are exhausted, from the stress on our hearts. From the inflammation in our brains we are sometimes dizzy and sometimes confused, and we might need to reread, ask you to repeat, forget, lose the thread of our own trains of thought, need to hang up the phone and go lie down.

I know that the doctors, the family and the friends meant well. If only I didn't have to educate doctors when I can barely read long enough to educate myself! Dr. Rheumatologist, thank you for the intention if not for the advice.

You can see our pain and you want to help? Thank you, thank you so much. I have been touched by the caring we've encountered. But if you want to help, don't try to tell us what it might be. We need rest and we need less stress, so if you can provide those, great, and if not, your understanding and caring are appreciated fully, without any attempt by you at offering a cure for something that it isn't.