Patti Edmon Altered Attic: the invisibleness of invisibility

Thursday, September 16, 2010

the invisibleness of invisibility

Here it is Friday and my goal was to post every other day during the National Invisible Illness Week. So much to say... about what it causes my family, especially my husband to endure, the guilt that flickers in my brain at the drop of a piece of laundry - that I can't wash at the moment, the lack of social life... If not for art and writing, I think I would be, well, a mess.

I did have a few hours this past week, after having been in a major flare for nearly two months, of self pity. Or, is it grief? When something of value ends, be it a life, dream, career, there is a natural cycle of denial, anger, bargaining, depression, acceptance (Kubler-Ross model). But when it doesn't end once but loss is felt over and over again? Though not in order, I do reruns now and again.

It is autumn, a season I love but one that, second only to spring, triggers more flares with each dip of the barometric roller coaster. And, since Medicare doesn't pay for my meds, to the tune of $4000 per month I'm relying on prednisone - woohoo. The good news is that I've begun consulting a very wise and educated clinical herbalist - Andrew Bentley. He has a wealth of knowledge and experience; I've begun taking pure plant extracts, the natural version with the anti-inflammatory properties I so desperately need. They will take longer to be fully effective, but side effects like lymphoma, no more red blood cells, etc. are not an issue.

So, in spite of spending too much time stationary, I am lucky! I have a good friend with Lyme's Disease and sides of fibromyalgia, anxiety and depression. She is a single mother and her daughter has also been whacked with the ICI stick. Doctors in Kentucky, or most of the ones I know, don't believe there is Lyme's in Kentucky, though I had it in 2004, before the onset of PsA. Like many other invisible illness, Lyme's often hides from traditional tests.
For every person like me, who knows exactly what I have and which battles to fight, there are dozens who are suffering with no answers. I have a wonderful book, Sick and Tired of Feeling Sick and Tired (Living with Invisible Chronic Illness) that is very validating and I highly recommend it to those with illness - or their families. Statistics show that half the population suffers from a form of chronic mental and physical illness, mostly invisible, which might be one reason there is a new edition of a book that was first published in 1994 and after ten printings has been updated with a host of invaluable info for, well, 1 of every 2 people:)


winnsangels said...

Hello beautiful. Wishing for you some peace and calm midst all the angst. You are so fortunate to have your parents still able to help you as much as they are.
Wondering if you've had opportunity to read any of the stories at Crescendo(h) about "Art Saves". Your story would fit in so beautifully. Hoping you might choose to share it.
Angels be with you beautiful lady.

Bleubeard and Elizabeth said...

I have thoroughly enjoyed these posts, since I also have a rare form of arthritis that I was born with. It is classified as a birth defect, but I've had doctors tell me it's not something you are born with, and others say different. You are doing a big service to this blogging community and I sincerely hope you find a way to live with your pain.

For me it was partly attitude. I FORCED myself to get up and do something with my life. Of course, I still have the pain, the discomfort and the incredible deformity in every joint in my body, but I no longer hide from it. And like you, there's no way I can afford anything. I haven't even seen a doctor in nearly 20 years. Do I get depressed? YOU BET I DO. But I have people like you to prop me back up and that's what I try to do in return.

Keep these posts coming, dear. They will do more for others (and yourself) than you will ever know.

Diane Rose said...

Hey Patti...just wanted you to know I stopped in and read your blog. In fact, I have done so several times, but just now figured out that I should leave a message. I miss seeing you at ballet...we should meet for tea sometime.

Much love to you and your family,

-Diane Rose

Sharmon Davidson said...

Patti, I think it's OK to feel depressed or angry or whatever you need to feel. One thing I've learned over the years is that you shouldn't try to keep everything bottled up inside, because it will only make you sicker. With that said, we can still try to concentrate on the positive as much as possible- as you certainly do, my friend, to an inspirational degree.

Drug companies are heartless; (I say this knowing that without their products I would probably be having electroshock therapy every other day- ha!) I believe it's fine for them to make a profit, but 4,000 percent seems a bit excessive. I know that if I didn't have insurance I'd be in serious trouble, but if I lost my job (say, for instance, I couldn't work because of health problems), I couldn't even collect disability (which I pay into every month) because it would be considered a pre-existing condition.

I could easily go on, but I don't want to go on a rant (is this a rant?). As some one once told me, when things are bad, walk slow and drink a lot of water!

Love and hugs, and more hugs!

Anonymous said...

Patti ~

My heart goes out to you. I can so relate to what your illness does to you way of living. In the last year, I was diagnosed with FMS/CFS (fibromyalgia/chronic fatigue syndromes) and my life has been turned upside down and shaken violently. I tried bulldozing my way through my days, but discovered I was doing more harm to myself than good. Now, I focus on what I can do rather than what I can't. I find that art and writing are things I am able to do. These things have proven to be a blessing. I'm very glad you wrote about your illness and the effect invisible illnesses can have on a person. I think it allows others to better understand such things.

Blessings to you!


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