Patti Edmon Altered Attic: Life is a Merry Go-Round

Sunday, September 12, 2010

Life is a Merry Go-Round

I'm lying on the sofa while my mother-in-law is cleaning out the refrigerator, cutting up the fruit she brought, along with the rest of my grocery list. Wow, I really have it made. Except, no bon bons, no soap operas. Nausea, swollen painful joints and the kind of fatigue that kicks you flat.
September 13 - 19th is National Chronic Invisible Illness Week. I wrote a post last year and now, here it is again. The biggest difference is that, along with the disability came Medicare. A donut hole?? What that means is that if I want the same medications that allowed me a better quality of life than this - I have to cough up several thousand dollars every year. Hopefully, my empathetic, fabulously wonderful rheumatologist, a word unrecognized by my spell check, will succeed in procuring a supply from the drug companies that, until their patents expire (my theory, opinion, not fact) gouge $1750 for the two injections I need every month. Forget the very costly eye drops that prevent the blurred vision. Well, sometimes.
I am lucky though. I know my illness - it's name is Psoriatic Arthritis with a side of Sjorgren's Syndrome; all part of the vast world of auto-immune disorders. There are so many out there who don't get diagnosed, go for years in pain, confusion, isolation, in other words, a silent hell. Those are the people I am speaking for; I know why I wake up so many mornings dreading the exit from bed after a not-quite deep enough sleep, to find that I feel like one does when the flu attacks. Minus the fever.
Just a few years ago, I was on the merry-go-round like most everyone around me, though it had begun to spin a bit too fast. Lean, running two businesses and competing in horse shows, life was at full tilt. Only then I got tossed, and I sat on the ground watching everyone else go by, oblivious, laughing or crying, living in the moment or dreaming. And doing.
We are all raised to be human doings rather than beings. Our net worth, accomplishments, trophies, medals, private success, whatever title we carry, real estate we own, car we drive, we are known for all that exists outside of reality, in other words, outside of ourselves. Outside of being. Human being. I matter, I am important just because I'm me. Well, that's what I try to focus on during the hours I lose to this chronic, yet not fatal, illness, that pretty much rules my existence. Those days when I look back at photos of me doing.
Don't get me wrong, I do art, but in reality, my reality, art is in me, my being. As is writing, which chose me early in life. And art is my therapy, my saving grace and for that I am most grateful. It brings to mind the countless chronically ill who have far worse battles than I, fewer opportunities to channel their grief and pain into a mixed media piece. So, if you're still reading, click the button to the right.
Oh, and thank you Janet.
I hope nothing too gross was growing on the unidentifiable mess you found in my fridge. I am eternally thankful for your help and support. And, while I'm in a moment of gratitude I'd like to say that having family that understands chronic illness, like my mother and father do, is a blessing, albeit very much in disguise. I am blessed with friends, artists and bloggers, who have one or another form of illness. Right Karin?
If you are one of them, please leave me a post! Thanks from the ground, watching the merry - or not - go round.

note: these photos were before ICI... when I was a doing:)



16 comments:

Lani Gerity said...

Thank you for posting this today. It makes me want to write a "what I have learned so far" post about the merry-go-round, brass rings, and life in the margins...

You have me thinking.

(PS - Paul Grand is Paul of Paul and Jill who have "FlyPaper Textures" and I think I fixed my post so it makes more sense now)

La Dolce Vita said...

great post Patti and yes I do get it and understand completely. I agree about the humans doing thing, and i think it is an insidious part of the american culture. I count my blessings as the only part of me to be affected by PA is my right thumb, and it seems to be much improved since I gave up gluten. hoping you feel way better and sending much love and hugs, cat

My Vintage Studio said...

Hi Patti.
Thank you for your post today. Chronic illness is a blind disease.
Yes, the healthcare is scary as you mentioned.

Hope you feel better soon.
Hugs, Sharon

Bleubeard and Elizabeth said...

As someone who has suffered from arthritis since birth, I get it, too. Having to sit on the sidelines is probably the hardest thing I've ever done. This is a lovely, lovely post. I'm so grateful for you.

Healing Woman said...

I'm so glad you have your art and can and do such a wonderful job creating.

Dead Poet Society of One said...

Life is just a dream come true. Hang in there. As you can see, there are a lot of us riding the same Merry Go-Round. For anyone else out there, we don't want platitudes - just understanding (and cheaper drugs).

Karin Bartimole said...

Beautifully expressed Patti. Yes, right you are! I feel i understand deeply, and as someone who has recently been through the diagnosis and treatment of cancer as well as having a chronic auto immune disease, i can say with ease that it's the latter that most challenges the quality of life i live...
wishing you healing and complete access to the medications you need to manage PA. it should be your right, not a distant privilege.
You do look beautiful and majestic up there on your horse :)
sending hugs,
❤ Karin

Sharmon Davidson said...

I do get the Doing versus Being thing; American culture says that if we're not constantly doing, doing, doing, our being is worthless. Furthermore, what you're doing must be something that COUNTS. Art, for example, doesn't count unless you make lots of money from it, and staying home with your young children counts so little that you're actually invisible to most people if that's what you do...
I could be getting a little off-track here, sorry.
I think raising awareness of chronic invisible illness is a worthy goal, indeed. There are other invisible illnesses, too, that no one ever talks about, because they aren't physical illnesses, and no one even wants to admit they have them, much less talk about them. But they 'put you on the sidelines' perhaps even more than physical ones, because no one knows why you're not participating.

Much love to you, Patti; I hope you feel better soon. You're always in my thoughts and prayers.

Sharmon Davidson said...

p.s. ... and don't even get me started on drug companies...!

alteredbits said...

gorgeous photos, lovely lady! and fantastic post.

you important just because you're you! i agree. i should tell myself this every now and then. i have it great compared to many people, despite severe, oftentimes disabling depression and horrible anxiety and severe candidiasis and a dash of chronic fatigue syndrome. blah. that's nothing to what you and so many others go through every day. you amaze me beyond words -- you impress me and make me feel so blessed to know you. if i weren't so ADD i would tell you more. i get so side-tracked in life and nothingness sometimes that i forget even the "little things" like saying hi to friends, etc. letting people know that i'm thinking of them -- all that.

you are a beautiful, wonderful and talented lady and i'm so glad to know you! thank you for sharing this -- i remember your post last year and i admired you so much for it. today i admire you even more.

Patti said...

I repeat- friends, community, whether they are next door or in another continent, makes ALL the difference!

Debrina said...

I remember this time last year when you wrote about your pain. What has transpired from all that pain, though, Patti...is beautiful, beautiful art and writing. It seems like such an unfair price to pay, but life has a way of doing that to you. You say this was you in the photos during your "doing" but to me you are still doing, because you and I are artists. Even in our sleep we do...we dream and we create. And that's a God-given gift.

Kathy said...

Hi Patti~
This is the first I am reading of this, and it sounds a bit familiar to me as well. I dont have time to read it now and absorbe it, but I will return when I am less scattered. I just wanted to offer a big hug to you, right now.

Erika C. said...

Wow, Patti. So inspiring to hear what you say. I too have been thrown off the merry go round, (at least the big one, my brother in law, Al Gori has a little one that I think we can all ride on-see on my recent blog post)

I was thrown off three years ago when my son started having difficulties at school and it has been a wild ride since then. But I call him my trickster, he keeps me on my toes, reminds me to stay grounded and has led me back to art and to all of you wonderful 14 Secrets Artists! It is because of him that I reconnected to Lani and found her wonderful blog and the 14 Secrets. I was looking for an art therapist for him and though I am now instead finding ways to use art myself with him, and didn't actually decide to sign him up for art therapy, I am so grateful for what I found instead.

Lots of love and healing thoughts.

love,
Erika

Keke said...

Patti...I wandered to your post like I do so many others starting with a blog that I follow and then curiousity sends me to brand new worlds. I too have an invisible illness and found your post quite profound. Thank you for your wise, humbling and insightful words. I hope today you are better than well!

XO Keke

Elizabeth Golden said...

Good Morning Patti! I haven't visited in a while and you have been on my mind. I so related with your post. My best friend has been suffering with similar problems. At first they told her she ws crazy, hysterical, making it up. Finally after the rounds of doctors she found someone besides me to listen and then help.
Fast forward to July and breaking and replacing my hip. What a journey. I have never been sick or in pain. Even childbirth was easy. Now Ii finally get it. Although my rehab will take a year, it is not the lifetime that ya'll spend with up and down days. I finally get it. I have thought the past few months that the purpose for me was someone showing me what others have to go through. My hats off to you sweet lady. Your wonderful art and beautiful person that you are shines through.
Thanks for speaking up and giving a voice to those who cannot.

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