To Our Patient Subscribers

The Baron grows concerned: my monthly acknowledgements to our subscribers are piling up in his IN box, awaiting my reply so they can be tucked into the DONE box where they rightly belong. Each day I take out my list, hoping I’ll feel well enough to begin my responses, but like the day before the only thing that changes is that the pile is bigger. It will not do any longer to begin a note with a lame “sorry I’m late”, since being sorry implies (as they taught us in Catholic school) a concomitant “firm purpose of amendment” not to repeat our lapse. But since I never do know when I’ll feel well enough to get started, my “firm purpose” even to get out of bed in the morning does not rest on any realistic foundation. Even a few of my unexpected thank-yous — for books and music — are waiting for a response.

After talking over this problem with the Baron, here’s what we decided:

I would write a general post (this one) to tell everyone who sends us monthly donations — y’all know who you are — that I will pick up the baton again very soon. I’ll begin again at the point where I left off some weeks ago, though I no longer remember where that was…

I want to say I’ll start up again very soon but it takes so little to throw me off. For example, this one small yellow jacket sting has left me with a slight fever, weakness, fatigue, and general malaise. As many of you are aware, I actually like writing thank-you notes and other correspondence. Once I get a letter started I’m off and away down the page. It gets me into gratitude mode and that in itself is a good place to be. A kind of mini-vacation. I genuinely enjoy the process, but not right now. Right now everything is an effort, and… “Is it hot in here, or is it me?” Darn fever again.

This is a case of the spirit being willing… even while my energy has gone on vacation. I suppose that’s a tad better than taking leave of my senses, though on my bad days it’s difficult to distinguish those two. Sometimes it’s hard for me to judge how I feel; it’s all so amorphous. I’m told that’s a common condition with chronic pain. I can tell by picking up clues about my behavior. For example, when I stop making “To Do” lists I know I’m not doing well.

The Baron has asked me why, if I can respond to comments, do I find myself unable to write our donors, a task I enjoy. But the thing about comments is when I go to let them in, I notice a remark that seems to pull a response from me, and I’m off to the races. Doesn’t require opening the email window, finding an address, and so on. The comment box is right there in front of me. I even have notes for a few posts on the back burner, but in all good conscience I can’t post those if I’m not more nearly current with notes to our donors.

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When I first began to discover what fibromyalgia was, and then started the long haul of coming to terms with what it meant for my day-to-day life (the reality of it is an ongoing struggle), I’d visit the Fibro forums online. They were a wealth of information on diet, rest (“nap aggressively and often” one father advised his son), vitamins, etc. I learned the wide range of symptoms and became grateful I only had about half of them. I found out the best foods to eat to lessen fatigue and pain. And it turns out that exercise is not a good idea, though walking helps as long as one doesn’t go too far or keep it up too long. From those who’d gone before me, I learned the minerals and herbs that lessened pain — magnesium with malate being a good example, but there are others. For example, I just discovered a new form of vitamin B-12 that is supposed to offer some relief from pain.

I also found out that other people with fibro had the same lust for pillows I do. Can’t ever have enough pillows… and everyone ought to have a chaise longue on which to pile them, plus a sunroom with a corner for the chaise. Plus a maid to serve iced tea. I was going to search YouTube for that charming ditty, “Everybody Ought to Have a Maid” but my energy flags. So y’all just hum along while I finish and go back to fantasizing about chaises longues and down pillows.

Donors: When you hear from me, you’ll know I’m back in the saddle. Until then, you can be certain I’m thinking about y’all. I ask for your understanding in the interim between now and when I find my way out of this.

7 thoughts on “To Our Patient Subscribers

  1. “Is it hot in here, or is it me?”

    Is it solipsistic in here, or is it just me?

    • It’s you, old boy.

      The words I put in quotes are used as the title of two books and at least one song. But it’s a gurrl thing, Mr. Spahn.

      Or a fibromyalgia thing, since w/ this condition the body’s ability to regulate its temp gets a bit wonky…happens to guys with fibro too (men make up only 25% of the FM population, leading some scientists to say that when they do find this dysregulation, it will be on several of the X chromosomes).

      FM runs in families but can skip generations. It shows up at different ages too. The earlier it manifests, the more severe the symptoms will be.

  2. Good luck with the “aggressive napping”. I daresay it’s similar to PG Wodehouse’s “modified rapture”!

  3. Have you ever been tested for Sjogren’s syndrome?? Look it up… many with what they call CFS really have Sjogren’s. Found out all about it when tested and diagnosed at Mayo Clinic several years ago.

    • It’s not just fatigue for me, it’s widespread pain. No joint pain at all, but gel-like lumps come and go but are usually bilateral. Sjogren’s was considered at first but I don’t have enough of the symptoms. I never had dry mouth until chemotherapy.

      One UK doctor has proposed FM may be similar to gout, but instead of oxalic (or other) crystals forming in the joints, they form in muscle tissue – ergo, the ‘lumps’. This doc was highly motivated to attempt to find a remedy since she was going to have to give up the practice of medicine if her own symptoms didn’t improve. Having nothing to lose, she went on a very strict diet – the kind that people w/ gout symptoms use. To her great relief, this method worked for her. She said if it’s going to work, it does so within three weeks or so.

      I tried her method but it didn’t reduce inflammation for me. However, I do tell others about it since this syndrome has so many variations & anything is worth trying.

      The average person goes through 13 doctors before she or he is correctly diagnosed. My doc sent me for remedial physical therapy to improve the constant pain in my legs but aside from some helpful postural exercises for my scoliosis that was a dead end. Finally she suggested I “might” have FM and referred me to a rheumatologist.

      By the time he finished his exam, which consisted of pressing on the standard pressure points where FM is usually evident I could hardly walk out of his office. On the way to pay my bill at his appointment window, he handed me a scrip for a pain drug and then told his clerk to make a follow-up appointment for 3 months. At that point, I was woozy with pain and wondering how I was ever going to drive home. But I had my wits about me enough to ask him if there was any treatment he was going to prescribe for this malady. When he said no, just the pain pills, I took a deep breath…and as politely as possible told him there didn’t seem to be much point in driving an hour each way four times a year to have him tell me, “yep, you still have fibromyalgia”…

      Later, in similar situations, I learned to smile and agree with the white coats and take their appointment card. A few days later I’d call the clerk and cancel the appointment.

      The VERY best treatment one can get from any doctor can be had quite simply: take along a husband in a suit and tie (or a wife in similar business attire, or a relative or very good friend) and have them sit in on the visit or exam and take notes. The notes can be their own grocery list, or just gibberish. What matters is having an accountable adult in the room. As the patient, you’re already one down.

      The difference in your doctor’s demeanor will be striking. It’s not that doctors aren’t interested in their patients, or are careless; they’re just busy and you’re one more body. But introduce a credible-looking witness armed with a notebook and pencil – or even a computer notebook making entries – into the mix, and their care and attention improves exponentially because you’ve introduced change into their routine.

      The Baron always explains that due to my FM, I seem to have become a terrible medical historian and am forgetful about dates and treatments…he is good at putting them at ease and makes sure it doesn’t turn adversarial…

      …boy, has my treatment improved.

      • Because of ulcer trouble I spent last Thursday through Tuesday in the hospital. Hopefully the new meds will help heal this.

        I have had enough illness this very month to last all year.

        Hope you are feeling better today. : )

  4. Dear Dymphna, last year, when I read that you lived with FM, I was astonished that you still achieved so much. I have FM, that was diagnosed by my Dr, more than 10 years ago. I think I had it long ago, too. I used to think it was wrong to complain; no wonder diagnosis was delayed.

    The coordinator of the Q Society here said that one of the best things about being involved in the counter-jihad is that you get to meet amazing people. I know what he meant; we are the ones able to break out of the programming and think for ourselves and motivate ourselves to take action of some kind to oppose the spread of Islam.

    Reading your words here at GoV, I feel that I “meet” you, too. Knowing that you do not give up helps me to keep pushing, too. I have other health issues that can make the FM bad; it has been bad lately. This has not been a great two years for me, health-wise and I am tempted to give up and then, I read words from you (or from the Baron, with his burden of health issues) and just knowing you are still in the fight helps, somehow. You inspire me.

    I find magnesium helpful and (taken with calcium) it’s good for maintaining my aging bones. I find vitamin D very good and a supplement is essential as I must minimise sun exposure. I stopped taking vitamin D for a while; things can “slip” when I am unwell. Missing vitamin D makes my FM symptoms worse. May I recommend that you take a couple of thousand IU of vitamin D a day? It is safe, even taking 10,000 IU/day for 6 months, so I used to take 3,000 IU a day when I was doing better. As I am obese, 1,000 IU/day (the usual maintenance dose) is likely to be insufficient; obese people need more vitamin D.

    If you want some extensive medical info about vitamin D, see this article from the prestigious “New England Journal of Medicine”:
    At least read the pages about who needs supplementary vitamin D and how much.

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