Gardener Symptom Series: Joint Venture!

Gardener Symptom Series: Joint Venture!

The following is part of the Gardener Symptom Series. I believe that Sarcoidosis is an inherited genetic disorder along the lines of other immune disorders, such as rheumatoid arthritis. I do not believe Sarcoidosis is the result of external triggers or pathogenic causes. I do not believe the severity or likelihood is based on race, environment, nation of origin, or habitual causes. Children, livestock, and people from at least 100 years ago suffered from Sarcoidosis, thus ruling out any modern, adult, or human habits. I believe the cure will be found in advanced gene therapy.

Because Sarcoidosis is a systemic disorder of the body’s own immune system, it may manifest as inflammation or granulomatous deposits anywhere in the body, at any time, interfering chemically or mechanically with any and all normal body functions. That is what I hope to document here, the wide variety of symptoms based on my own experience which is, of course, merely anecdotal.

Joint Venture—Sarcoidosis and Your Movable Parts

At almost exactly my age, my father was diagnosed with Rheumatoid Arthritis and if any a disease was misnamed, it's this one; it should be more aptly titled Slow Motion Cancer. It is not the kind of geriatric arthritis one associates with getting on in years, the simple wear and tear of a life’s worth of activity on the old bones and joints, no. RA is an insidious system-wide auto-immune disorder, just like its cousin Sarcoidosis, it turns the body against itself, not only with excruciating inflammation of the connective tissues, but also re-distributes calcium throughout the body, making bones thin and frail with holes, and depositing lumps of calcium wherever it pleases. The joints are eaten away painfully over years until all that is left is raw bone scraping against raw bone. Disfiguring so severely that, unlike our ‘you look fine’ remarks, an advanced RA sufferer looks physically ravaged. RA also takes a permanent toll on lungs and the heart; in the end, two artificial knees and a quadruple bypass later, my father died of “congestive heart failure” brought about by a lifetime of systemic RA misery. The autopsy revealed that his heart had enlarged to the size of a basketball. So, no, Rheumatoid Arthritis is not your granny’s Sunday-rainy-day-crocheting stiffness.

I want the word arthritis stricken from Rheumatoid Arthritis—its misleading. In the same way I do not like any word to be added or hyphenated after Sarcoidosis, it narrows the scope of the disease to the casual reader. To say you have “Sarcoidosis of the lungs” or “Sarcoidosis of the Skin” or Sarcoidosis of Anything is a disservice for anyone with the disorder or treating the disorder; I can assure you, if you have Sarcoidosis in the pinky, you have Sarcoidosis system-wide plain and simple. It’s systemic. Where and when it strikes is a spin of the Thursday night church bingo wheel. It may or may not be as profound in your spleen as it is in your lymph nodes or lungs, but nothing should be ruled out. And for you newbies reading this, don’t let me frighten you, think of the way the common cold can be more than just a runny nose; it can be joint aches and sensitive skin and headache, etc. That’s the nature of the disease, and so it is with Sarcoidosis. Month to month things can change. Sometimes, new things happen, sometimes things go away. Spin the wheel.

I thought I was done with the majority of the symptoms I had come to recognize; the shortness of breath, a red spot or two; the crampy chest and malaise; but after half a year of the waxing and waning of this mixed bag, Sarcoidosis introduced something new: Overnight Acute Unilateral Knee Arthritis.

This was bizarre. The pain was very, very real. I have a tire iron in my truck for any physician that would like to pontificate otherwise. For the record, once and for all; Sarcoidosis can cause excruciating pain.

Now, I cannot be sure what the physical mechanics are that cause this joint pain. It is so unreasonably unreal at times that I am tempted to say it is entirely nerve related because there is no way my joints could have physically crumbled overnight, and, as many of you will testify, I’m sure scans show the perennial Nothing.

It might be nerve related, it might be inflammation deep inside the tissues, for it seems too sudden to be instant granulomas. Besides, there is an additional symptom: Instant Acute Unilateral Knee Arthritis Remission. Boom. Just like that the pain is gone. And, to add to my Sarc induced neurosis, the Overnight Acute Unilateral Knee Arthritis has jumped to the other knee. No, now it's in my ankle. No, now my big toe. No, now its gone. No, now my feet. No, now it’s in my fingers. And so on, until that length of rope hanging from the rafter starts looking comfy. But before you can entertain such a graphically stupid solution, the pain is gone before you can pop a Motrin. Weird. Just plain weird.

And for the casual reader, I will tell you that this joint pain is not a boo-boo-kiss-it-better soothe-me-with-a-cup-of-chamomile-tea-extra-attention kind of pain. No. This is an I’m-actually-at-the-sick-room-supply-store-test-driving-canes kind of pain. Very real. Very excruciating. Hobbled and shambling along the walkway to work like a drooling Quasimodo on his way to the bell tower. Of all the Sarcoidosis symptoms, aside from the wake-up-with-a-kitchen-knife-in-the-back-lung in-the-middle-of-the-night pain, this is my far the worst. And it also dispels the “you don’t look sick with Sarcoidosis” myth, because you crumble into your place of work like a marionette with a drunken puppeteer.

“Say there, Tina. What’rd ya do to yer leg?”

“Um… Snowboarding.”

“You went snowboarding last night? Its July.”

“Ummm, yeah, well you know… it was pretty dark too.”

Although the pain and stiffness varies and comes and goes (right now I’m a happy: GOES) there is one overall symptom that lingers, and that’s the feeling in my whole body that I am just a loose collection of bones in a roomy bag. Gone is the tightness and firmness I used to know. I don’t think its age, because I felt tight only two years ago and I have fleeting mornings when I feel normal again. But on the whole, I am a wind chime made of bamboo. And even sound like one when I walk.

But that’s the real deal right there. I can walk. My father did not have that luxury. This is one of those rare times I will be thankful I have Sarcoidosis. I’ll take it over RA any day.

— My name is theGardener, I have two dogs, a cat, and sarcoidosis.

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