Talk to Your Elected Representatives

I posted an article at But You Don'tLook Sick.com April 2. I got many great responses about those struggling on SSi or trying to get it. I spent this morning on Twitter sending copies of my article to elected officials because I want our voices heard. If you feel strongly and can, please take some time to contact your elected officials and tell them how you feel about these cuts to Medicare and Social Security. Here's a list of REPs:
Contact elected officials

Here's a link to my post:
Paying People to Stay Home

If we don't speak up, who will?
Have a great day everyone and thanks for reading.

Sjodren's and Scleroderma

This post is not to judge what Marilyn Leisz knew or didn’t know it's a great opportunity to talk about Scleroderma.

Marilyn Leisz was interviewed on The Today Show. She had eye surgery and cannot close them completely. Sound familiar? If not, allow me to introduce you to Sjodren's Syndrome. Sjodren's Syndrome itself is an autoimmune disease. It was unclear to me if the two exist as separate diseases or underneath the umbrella of Scleroderma symptoms. (If anyone can clear my confusion, please comment) The "hallmark Symptoms" are dry eyes and dry mouth. Patients with Scleroderma have dry eyes and dry mouth because of the free facelift and nose job. Their eyes do not close all the way when they blink or sleep. It's tough to manage. I watched Marilyn Leisz's eyes as she spoke and it made my eyes hurt. You could see the unconscious struggle her eyes were making to close.

I had to make this short today, but I wanted to get this out. Check out the links, watch the Today Show clip and learn more about the symptoms of Scleroderma and Sjodren's.

Thank you for reading and have a great Friday!
Karen
For more Info:
Sjodren's Syndrome
The Scleroderma Research Foundation
The Scleroderma Foundation

Living With Fire Marshal Bill (AKA Metaphor Much?)

Laugh at what scares you; it will only make you stronger. Let me show you something…

For those of you unfamiliar with Fire Marshall Bill, let’s get you up to speed. A long time ago, George Bush Sr. was president, JLo was a "Fly Girl" and Jamie Foxx showed us the only way to snap on the show “In Living Color"- the show where everyone was equally kind. Jim Carrey was also a member of the cast. Out of his many characters my favorite is Fire Marshall Bill.

Fire Marshall Bill could easily pass for a Scleroderma patient with his bird like features. His burn scars are very similar to the facial tightening caused by that disease. I like to call it the free facelift and nose job, similar to a gift with purchase, but I digress. Fire Marshall Bill would share his vast knowledge of fire safety with anyone who would listen and always absolutely free.

What does this have to do with Scleroderma or any autoimmune disease? Watch this video of Fire Marshall Bill, and then continue reading.
Click Here

Now, imagine some cells in your body with teeny tiny Fire Marshal Bill faces and even tinier bottles of lighter fluid messing with mitochondria and lighting cell walls on fire without prejudice. Cells creating mass chaos and destruction all in the name of safety. Damn those confused cells of an autoimmune disease! Okay, calm down. Flare ups will happen. So when we can’t get the match out of Fire Marshall Bill’s hand, we just have to ride it out and then find ourselves a hot firefighter with a blanket and some coco. Remember to get some rest. One needs to keep a close eye on that bull in a china shop with flame-throwing hooves.
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I'm interested to read comments or opinions. And remember to laugh at what scares you; it will only make you stronger. Oh, and beer makes everyone else beautiful.

Get some Humor in Your Reality.

My sinuses are full and I'm exhausted. Mustering energy to go get antibiotics for my infected caverns in my skull. Instead of breaking to a Conway Twitty clip Family Guy style- (fuck it, I'm too tired to find the Conway Twitty Clip, just click here and pick one.) But if you feel like a good blog entry, allow me to steer you to reality in diagnosis.

If you don't follow Stephanie @bydls, check out her latest blog entry. She will get her funny in your reality.

Happy Larger Than Ever in 18 Years Moon Day!

If you have some gently used shoes to get rid of, go check out soles 4 souls taking shoe donations for Japan. Put the help back in feeling helpless.

Cheers,
Karen

My Subconscious, Is It Really A Place One Should Visit?

I was up at 2:55am this morning. I went back to bed after an hour. I should've made coffee and stayed up. I fell back to sleep and had the strangest dream. I was living in a big house with my ex-husband. In my dream I was delivered a ceiling fan and a coffin, both made by IKEA.

I removed the outer box of cardboard the coffin came in and marveled at the beautiful Teak wood box. I opened the lid and found a release button just beneath the lid handle. I pushed it with normal fingers (remember, this is a dream) the lid released from the hinges on the opposite side. I started pulling it toward me like those coffee tables that rise up to become giant TV trays. I continued to pull the surface toward me, and then 4 legs released from the underside lid of the "coffin" and began to straighten. It started to stick and I walked around to the other side of the now "table". I saw a release lever and instinctively pulled it. The top detached from the rest of the unit. The top of what was a coffin stood alone as a beautiful teak desk. A coffin only has one use, but a coffin that converted into a desk- that's just plain genius. Thank you IKEA!" I was so dumbfounded; I failed to notice ornate carvings that resembled hieroglyphics around the edge. I looked down at what would've been the bed of the coffin and saw the same ornate carvings but the bed was replaced by what appeared to be bookshelves.

In front of me stood a desk with one drawer in the center of the carvings. I opened it and found a laptop computer. I quickly went into a nearby closet and pulled out a comfortable office chair I had apparently been saving for such an occasion.

Then, my alarm went off and I woke up to three dogs giving me the stink eye. They wanted to go to the park, and they wanted to go now.

So, what was this post about? Do I think I’m going to die because I ordered a dual-use coffin from IKEA? Am I somehow willing the Universe to send me a new laptop and desk? Maybe, it’s not like I’d say no to it. Could it be an escape my subconscious is attempting to create because while I was up for an hour I watched the news and it was so packed with despair my brain wanted to make me feel better with a new desk and laptop? Maybe. What’s the deal with IKEA? I’ve never been to an IKEA store. Does this mean I need to go visit one? What became of the ceiling fan? Why do I even care? Anyone have comments or interpretations?

On a side note: My ex husband did appear in my dream but I have seemed to block that part out because I can’t remember what exactly happened. I just remember he was outside the house.

So, what’s new with you?

A Quick Word about Duloxetine.

I have been taking Duloxetine for more than 3 years. I ran out once and had to wait a week for a prescription refill. During that week I had the usual withdrawal symptoms such as "brain zaps" or lack of concentration, but overall I felt awful. I think a great deal of my depression is related to pain. Before taking Duloxetine, I started taking 2 vicodin every morning and after doing so, I felt like showering and getting dressed was somehow easier. I was more productive on days I took vicodin in the morning. I noticed an even bigger improvement when I started taking the Duloxetine. Now I use Vicodin more of an as needed basis, which is better for my liver.

When I read the PubMed posted on Twitter by @fibroaction, I was happy to read “In addition, the efficacy of Duloxetine was found to be due to direct effects on pain symptoms rather than secondary to improvements in depression or anxiety." It's tough to just "walk off" chronic pain at such high levels.

It's good to see other patients will benefit from this pain relieving benefit and I am not imagining things. Sometimes pain is so frequent and intense, it really feels like I'm crazy. I may be a mental patient with depression, but I fell less like a nut today.

"So Now Sweet Sixteen's Turned Thirty One"~Bob Segar

Change that 31 to 40 and that’s me. In 1994 I was 23, recently honorably discharged from the Navy. I was full of ambition training for softball, found work waiting tables, Mobile Disc Jockey (picture) and a beer cart girl with an ass so perfect you could bounce a quarter off of it. I had just moved to Wisconsin and I was waiting for my freshman year of college to start. No signs of my upcoming battle with Scleroderma and Sarcoidosis except for that tingling in my fingers, which was only a nuisance back then.

Fast forward to 2010, I’m walking on a treadmill because it hurts to run. I’m not fat, but my ass is no longer in its prime (and that’s being VERY kind). I start daydreaming about what had happened to that hot chick I used to be. My hands once beautiful and played Stairway to Heaven on my guitar, were now fist like because of their contracted tendons. I became sad about loosing that, but I think as we grow older, all of us long for the beauty of our youth.

As I grieved for the hot chick, I started thinking about how as hot as I was- how underdeveloped my brain was as age 23. My walk on stubled on one of those “If had I knon then what I know now” moments. I kept plugging away at the treadmill and then I had an idea. What if the hot chick wasn’t gone? Maybe I had just become so terrified by what had happened to my young body I just shriveled up inside in a futile escape attempt from the shell that was once my strong body. I suddenly realized I have been going about this all wrong. I had been working so hard on the outside; I forgot to take care of what was inside. I’m not saying I should just take a meditative pose and stay there. I’ve just decided to start working from the inside out, rather than the outside in. I have to accept myself as a work in progress, not incapable. I have obstacles, but I have to forgive myself when they cannot be overcome. I need to start hiking in the foothills rather than trying to conquer Mount Everest.

So maybe you can't bounce a quarter off my ass, but I'm still the hot chick from the inside out. We all have an inner hot chick (or dude), you just have to remember to look.