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.
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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.

Giggity, Giggity, Giggity, Let's Have an Endoscopy!

I had the pleasure of upper endoscopy December 6th at the VA hospital. It was performed without a hitch because I had a great team. During an Endoscopy, the patient is sedated, but awake and instructed to swallow a tube with a camera on the end. The gastroenterologist performing the procedure examines the tissue of the esophagus, stomach, upper intestine, and takes biopsies for further diagnoses. It’s one of my annual routine tests to monitor the progression of Scleroderma, Sarcoidosis and its complications. I don’t mind endoscopies because I never remember a thing and I wake up feeling very relaxed, but there was one time that was not the case. In 2002, because of a lousy IV placement and an overscheduled doctor at Hemet Hospital more concerned about his quota, I was conscious during my endoscopy procedure. (I had an HMO. This has NEVER happened at the VA.) If you are ever asked to do one of those awake because your doctor is a douche bag, just say no, but I digress.

Diagnostic procedures have become as routine as annual dentist visits and flu shots. My GI tract doesn’t get any special treatment. I have routine tests every year for my heart and lungs. My liver, blood platelets, white cell count and kidneys are monitored by frequent blood work, but tests for my GI tract are the most invasive. I don’t remember much about my first GI test in 1996, but it did involve a dark room and two radiologists (Giggity). While lying face down on an x-ray table, one radiologist fed me a drink, while the other operated a camera and kept telling me to hold still and swallow. The camera was an x-ray machine, the cocktail was a chalky barium drink that felt like Pop-Rocks going down my throat and the procedure was called a barium esophagram. Luckily, I only needed to take the test once. The radiologists worked hard to provoke reflux symptoms and unfortunately, they were very successful. The good news; no more chalky Pop-Rock cocktails, the bad news; it only took one of these tests to determine Scleroderma was targeting my upper digestive tract and my doctors needed more information. I had been promoted to upper endoscopy.

I don’t remember my first endoscopy. Probably because of the great drugs they gave me to forget about it. (Roofies?) Eventually, a world of ways to view my digestive tract was opened and an endoscopy was just the beginning.

In 2005, I was given a test to determine my ability to swallow called a barium swallow study. A swallow study is performed by a speech pathologist and a radiologist. I was given barium-laced banana, chocolate pudding and juice while filming the food traveling down my throat made possible by x-ray. The radiologist doing the study was surprised it took four seconds for food to travel down my esophagus. That doesn’t sound like a long time, but next time you’re eating, take a bite and swallow, then count one one-thousand, two one-thousand, etc… It’s longer than you think. Later, an endoscopy confirmed what the radiologist and speech pathologist hypothesized: My esophagus had slow motility due to scar tissue caused by reflux. In addition, I had a hiatal hernia which prevented my stomach from closing and causing stomach acid to flow into my esophagus while sleeping. I also received the diagnosis of Barrett’s Esophagus, a pre-cancerous condition where the white lining of the esophagus is replaced by red tissue. It is caused by long term repeated damage from chronic acid reflux. The pre-cancerous part of it sounds ominous, but the percentage of Barrett’s becoming cancerous is low and treatable if diagnosed the early stages.

Barrett’s Esophagus must be watched by my doctors, but maintaining my esophagus is a full time job. After the swallow study, I was given a series of exercises I practice every day in the shower and techniques to protect my airway when swallowing. I have to sleep in an elevated position. The current medication prescribed for treatment of my symptoms is Nexium- 40 mg twice a day and Ranitidine (Zantac) 300 mg twice a day. The Ranitidine was prescribed by my physician as an as-needed med. My diet (mostly) consists of foods that will not cause reflux. I start out my day with a protein shake to assist with swallowing of my meds and allow an easily digestible form of protein to jump start my day. I keep my meals small. Size really does matter and too large a meal can cause reflux. I love Mexican food and have switched my salsa from a chilie-base to a mango or fruit salsa. Ranitidine is great before meals with ingredients that can cause reflux. It’s different for everyone but for me it’s anything with garlic. For my own sanity, I have to have some of the foods I love but shouldn’t eat once in a while. Things with onions in them etc… Nothing too crazy, but when I do, I plan the meal in the middle of the day or stay up very late, take my Zantac and drink lots of water the rest of the day. Regular exercise is also helpful, but movement is always a good idea- as long as it’s not upside down on a full stomach. Stress management has helped me manage my symptoms with a great deal of success. Divorce almost cured my reflux, but because I have to share custody of my son, the Ranitidine really comes in handy along with a good sedative- but that’s a whole other entry.

Esophagus Pictures

Quagmire's Horniest Video Clips
Check these out:
Bounce to a Cure
Ironman for Scleroderma

It's A Trap!

And Now, a Tease...

Excuse my grammar, but I want to get this out there. I will have a more detailed blog in a day or so, but is you have any circualtory problems, look into this finding. I'm on my way out the door for the VA, but I just wanted to say something about the recent findings having an immediate effect on blood vessels. This is an step toward better education about the toxins around us and how it effects the smallest parts of us we take for granted. The first thing I was told back in 1992 when my fingers turned blue and tingled for what appeared to be no reason is, "Stop smoking".

18 years ago doctors knew nicotine was a vasoconstrictor. If you get a chance, do some more research about it. I will be posting a full entry about it in a day or two if you don't get to it.

Have a great Thurs. everyone!

More to read: Livestrong