Sunday, May 17, 2015

A Messy Week - Health Update

When you have Scleroderma your connective tissue turns essentially to stone, imagine your digestive track become like a thick rock, no longer a wiggling spongy soft tract to move food and absorb your nutrients. This is where I run into a problem.
My poor digestive track is so shot that I cannot swallow solid food down my esophagus, my stomach wont empty its contents into my intestines, and my intestines wont empty period. Unfortunately, I am having a heck of a time getting my SIBO (Small Intestinal Bacteria Overgrowth) under control as of late. This condition happens due to a lack of movement in the small intestine, meaning stuff just sits -- and bacteria flourished. Now I know what you're thinking, constipation right? Wrong. Try so opposite that you cant even take a drive in your car without wildly screeching into the nearest drug store parking lot for a restroom. Lovely. Luckily there are special antibiotics that are made specifically for SIBO which is extremely common in Scleroderma Patients. Unlucky for us, once SIBO takes over and your intestines stop, you are on chronic antibiotics the rest of your life. Not so fabulous. The hardcore antibiotic I am on now is like an energy sucker! Man oh man I cant even keep my eyes open half the time. I take at least two naps a day on this stuff so I am hoping to finish this course than get another treatment option.

I had quite a few appointments this week, eight to be exact. Monday I received the results of my MRI which expressed my brain is doing just fine! Woohoo! Unfortunately for me however, this means my headaches are due to muscle memory trauma... Meaning, the headaches are due to nerves that cant seem to forget the serve trauma they endured in December. Essentially I will always have these headaches until my brain forgives me. Not the answer I wanted. As a result early tuesday morning I saw a Pain Management Specialist to deal with these chronic headaches. Honestly it was a complete waist. They were more worried about my mental status than my chronic and debilitating headaches. They kept expressing my pain would "subside" once I controlled my severe PTSD. I tried explaining to them that thats not how diseases worked, that not being stressed out doesn't make pain just melt away, but they didn't seem to comprehend that. They decided that in order to elevate my pain with a nerve block in the back of my skull I must first see a Phycologist... I honestly just had laughed. We ended up making a compromise, I would see their Phycologist if they started some type of pain management for the headaches immedietly. They accepted my offer so I will be starting a weekly procedure called Dry Needling. This apparently elevates muscularskeletal pain in a similar fashion to acupuncture I guess. It's worth a try! They agreed that if the Phycologist and Dry Needling don't expunge results within a month or so we would do the nerve block! Talk about having to run in circles just to get treatment! Jeeze!

I finally received back the biopsy results from my leg lesions a few weeks ago! It took three dermatologists and two pathologist to finalize a diagnosis. Apparently my results indicate that I have Leukocytoclastic Vasculitis, a very rare and serious disease of the small blood vessels. This disease effects the skin in most patients, but can be systemic, involving organs. Currently we are running tests to see just how deeply it has effected me. This disease effects 10-30 out of every one million people and is said to accompany MCTD/Lupus patients in rare cases. One more disease to add to my list I guess. Luckily, the treatment plan they would start for this disease I am already on due to my other inflammatory issues so no new medications need to be added at this juncture.

Later in the week I met with my Pulmonologist after running yet another PFT (Pulmonary Function Test) and an Echocardiogram to check for heart fibrosis or Pulmonary Hypertension. As of late my PFTs have been showing a serve decrease in my respiratory muscles, it seems that every few weeks I lose at least 25-30% of their function! Luckily this appointment I stayed the same as my last PFT three weeks ago; with the diaphragmatic function resting right around 20%. While this isn't good news, it's not bad news! Small victory! Hopefully this is a direct result of the higher steroid dosing and more frequent Rituxan. My Echo was also clear of heart disease which is fabulous news! All in all, my Pulm appointment went great, though my diaphragm still sucks -- at least its not declining!
I finally met with my new Neurologist this week as well. He expressed to me that he believed my care would be better managed through my university hospital, but agreed to manage my case if that is what I wished. He is running some blood test to search for a underlying neuromuscular issue causing muscle waisting, though he believes all my muscle weakness issues are stemming from my current autoimmune issue. Hopefully we will receive answers in the coming weeks.

This week was the Evergreen Washington State Scleroderma Foundation Annual Gala! Noel and I had a blast with Family, Friends, and Church members who attended. It was a lovely night of biding, dining, and dancing. I gave a short speech sharing a bit of my journey with Scleroderma for the crowd, and expressed the gratitude I feel for my Support Group. The Washington Chapter members are not only my dear friends, but my family. They have seen me through so many incredibly tough times in my life and for that I am eternally greatful. Late that night we broke it down on the dance floor... Feeding tube, oxygen tank and all!

Photo Booth Fun!

You know me -- Always sharing my story!

Breakin' it Down!

Scleroderma Selfies!

2 comments:

  1. Oh I can relate to the running to the bathroom a million times without warning! One of the joys of my Crohn's disease LOL

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  2. Oh I can relate to the running to the bathroom a million times without warning! One of the joys of my Crohn's disease LOL

    ReplyDelete