Tuesday, September 10, 2013

Invisible Illness week

I first saw this on my friend Patti Edmon's blog called Altered Attic

Now I've never made a secret of my illness, which I was born with, but, unlike Patti's illness, mine is not invisible, especially if you know where to look.  Just peruse many of my tutorials and you'll see deformed hands in action.

It didn't take any time at all to find a photo of my deformed thumb and "bloated" wrist.  You used to be able to see the wrist bone below my pinky finger, but now it is only a memory.   And that's not fat, either, dear friends because that's my "good" hand, the one they operated on to find the problem was not carpal tunnel.  Of course, I also appear to have  very dirty/inky fingernails in this photo, something I'm not used to, although in this case, I guess it was a badge of inky goodness.

How about an out of focus photo of the hand that was not operated on!

Here's one showing the bone that protrudes from my left thumb.

For those who aren't aware, I was born with a rare form of arthritis.  Apparently the word "arthritis" means different things to different people.  I was always told it meant "inflammation of the joints."  According to the CDC:

While the word arthritis is used by clinicians to specifically mean joint inflammation it is used in public health to refer more generally to more than 100 rheumatic diseases and conditions that affect joints, the tissues which surround the joint and other connective tissue. The pattern, severity and location of symptoms can vary depending on the specific form of the disease. Typically, rheumatic conditions are characterized by pain and stiffness in or around one or more joints. The symptoms can develop gradually or suddenly. Certain rheumatic conditions can also involve the immune system and various internal organs of the body.
Seems my diagnosing doctor knew what he was talking about those many years ago when I was just a child and some of my joints became inflamed.

When told the news I was born with "no calcium around my joints," I assured my doctor I drank lots of milk.  He then asked me if I lost my finger, what could I eat or drink that would bring that finger back.

Then my grandmother, a voracious reader (my grandparents raised me and she was with me at the time), asked if there was medication I could take, since she had read about shots that could be given.  He said the shots and pills were designed to break the calcium up.  Since I didn't have any to break up, there was nothing he could give me for my disorder.  That put it all in perspective for me.  Birth defects are a real bummer!!

After that, it was an uphill battle to ignore the symptoms, and there are days when I simply can't.  But most of the time I'm lucky enough to put mind over matter and ignore pain, weakness, lupus side effects, and joints that simply don't move forward or backward like normal peoples' joints.

So if you meet me on the street, you'll see my deformed hands, my enlarged wrists, and my sometimes swollen knees  Just please don't turn away.  I'm a really nice person,
but you must overlook those quirky hand gestures I make when I talk.  In fact, I'm not sure if I talk more with my hands or my mouth!

So, today, although I'm a bit late, I'm joining Invisible Illness Awareness Week to bring awareness to all "INVISIBLE" diseases or disorders.  I hope those of you who have an invisible, and maybe not so invisible, illness will join the cause.


16 thoughtful remarks:

Cazzy said...

Well done on blogging this, I was born with deformed ankles, I had to go to remedial classes until they operated aged 8, and I wonder if that is all related to all the problems I now have, plenty hidden, but painful. People don't understand, they didn't at work, didn't want me there saying ouch when I got up,among other things. My osteopath said my back is just worn out before it should be, also my knees and hips, and I have other problems I am trying to get sorted, and trying to lose more weight to help.

elle said...

Bless you, Elizabeth. How cool that in blogland we connect on a different level. The physical unfolds after that initial 'click'!!! I'm happy to call you, 'friend'! :)

Rebeca Trevino said...

well i still think you are pretty special, and even though we've never met, i think we would be great friends if we lived closer.

ps: it appears to me, however, that your "visible illnes" hasn't slowed you down one bit . . . wouldn't you agree?

voodoo vixen said...

I have heard you mention in passing when talking about doing certain things, like writing, that you had arthritis but never realised that it was from birth but it doesn't seem to have slowed you down or anything, so good on you!! :)

Dianne said...

You accomplish so much despite your pain that I don't think most of us understand how much effort and fortitude it requires to make your art! I admire you for moving on in spite of it. Do you get some relief when you are creating? I think that when I am 'in the zone' and focusing on my art, that I feel better. It distracts me from other problems. but I don't have a lot of pain (at least at this point) like you do. for me, Type II diabetes is the challenge. invisible too, I suppose. but lethal if not dealt with. diet and exercise is not optional for me, it's required! Hugs to you, dear friend! You are courageous!

Helen said...

I had no idea.. so well done on this post. Thanks for stopping by my desk today (grin) have a good day, see you soon.

Dawn said...

Awe Elizabeth you are a gorgeous lady, lumps and bumps or not. You have such an infectious smile and incredibly WICKED sense of humour, I feel honoured to have you as a bloggy friend. Brilliant and courageous post darling, I know many people with hidden illnesses, bravo you for the coverage.
Huge hugs x x x x

Caterina Giglio said...

TURN AWAY?? I would give you a big hug... xx

see you there! said...

If I spotted your great smile I probably wouldn't notice your hands. Many suffer with invisible illnesses of one kind or another. Thanks for bringing it to our attention.

Darla

Corrine at sparkledaysstudio.com said...

Big hugs Elizabeth. Accepting a condition you cannot control with anything as a child must have taken tremendous courage...yet you are always an inspiration, a go getter, a doer of all things even when I am sure you don't always feel well enough. I applaud you attitude, we can all learn a lesson from you...xox

Dandelion and Daisy said...

So many people suffer from hidden mental and physical disabilities that effect their lives in ways others cannot imagine, let alone understand. You have done wonders with your life and adapting to your physical limitations. Your spirit, however, has not been affected.

As for what you can use in place of alum, I think vinegar. I have tried just spraying the paper with the vinegar water mix with poor results. So, I think if I were to do that again I would soak the paper for maybe and hour before I steamed it. The alum acts as a mordant and I know there are others, I'm not sure what.

Have fun if you're playing today!

Monica said...

I might notice hands but not knees or ankles unless you walked. My hidden disease is Menieres disease and the worst manifestation was vertigo. Happily I have meds, not available in the USA but everywhere else in the world although it is now an Orphan drug.
Monica 99

~Rasz~ said...

Hi Elizabeth! So many bloggers have invisible illnesses. I have several and didn't know about this week being a time to bring this out. Your post is wonderful and thank you for sharing. You certainly have not let your illness stop you one bit! You are awesome inside and out and bring inspiration to me every time I visit!!!! Rasz

dawn said...

I learn something new all the time from you. I think you are a walking book of knowledge, love that about you. I had never heard of this silent day before, how wonderful it is though.
I would never have guessed you had anything, how awesome and strong you are to work thru it. I bet some days it is tough, does the hot days make it worse? So glad you don't let it stop you from creating beautiful art , playing in the garden and typing away at the computer. I would hug you if I could my friend. Those hands wouldn't scare me a bit, I bet we would both outtalk each other too.
Thanks so much for sharing today and teaching me something new.

My son is born with a crooked thumb, we discovered it when he was 3. It's on his left hand and he's a lefty. We found out when he was 3 and wouldn't give us a thumbs up with that hand but only the right hand. We thought it had broken and didn't know it. Turns out he was born with it, like a trigger finger they said. Well, it makes it hard for him to write most days and his writing is very sloppy since he can't hold a pencil the right way. We could have surgery done on it but didn't want to chance something going wrong or it not working. He does ok with it otherwise. Whenever we give him a thumbs up now from the sidelines of a game or if up on stage he ALWAYS uses his left hand for it now and it makes me and hubby laugh and smile so big back at him.
Thanks again,
Hugs
Dawn

~*~Patty S said...

Yesterday was an extra emotional day for me focusing on the daily pain that so many people suffer with loss...
I read this post and was moved in so many ways dear Elizabeth...
Your spirit and creativity are so special...
Thank you for sharing your passion and sharing your heART...
You express yourself beautifully in lots of ways...
(((hugs))) to you my friend ♥
oxo

Eliza said...

Good for you, I am proud of you, I also have an illness like you a tissue deficiency arthritis and have to manage, but I also have fibromyalgia and have managed for many years, some days are bad and some are really good, you just learn to take the good with the bad. If I could reach through the iPad and give you a hug I would. Sorry I can't do any postings about the awareness to support you I don't have time as I am at work.

Again Hugs, Eliza