I’ve Always Been Crazy, But It Keeps Me From Going Insane.

Thank you, Waylon Jennings, for that gem! I think I’d make one minor tweak to it to fit my life now:

I’ve always been crazy, but Xanax keeps me from going insane.

So far most of my tests and come back clear, negative, etc. I have one elevated titer for a virus. We won’t be able biopsy and test for this one unless or until I have another big breakout. They’ll need to biopsy a large lesion. Catch 22! I get to find out if this is the source of my Sweet’s (yea) if I can have another bad outbreak (boo). [Insert foul language here.]!

Let’s make one more revision:

I’ve always been crazy, but Xanax almost keeps me from going insane.

It’s incredibly frustrating dealing with such a rare disease. 

It’s not the doctors’ faults. So little is known about it, they don’t have anything to go on. So, I get to “donate” blood to my cause own cause quite often. I even have “track” marks from all the “sticking.”

Bethesda truly has been wonderful with the exception of just a small few. I didn’t think I’d be saying I’m glad I’m here if you asked me 3 months ago. I am saying it now. I am very glad I’m here. My list of heros at Bethesda:

  • Primary Care
  • Hematologist
  • Dermatologists
  • Endocrinologists
  • Infectious Disease-ogist (?)
  • Breast Cancer and Imaging Center-ists
  • REI/OB/GYN-ists
  • Imagists

I really wish I could call them all out by name.

How rare is Sweet’s Syndrome? #SweetsSynd

It’s so rare that there isn’t enough research to put it into a “box,” one specialty to manage our care once diagnosed. The American Autoimmune and Related Diseases won’t add #SweetsSynd to their list because an antibody has not be identified. An antibody won’t be identified unless or until enough research is devoted to it. Not all #SweetsSynd cases are autoimmune, which is another problem. I’m hoping the American Skin Foundation will reply to my email with some answers. I’m going down a list of associaitons. Next up is the Genetic and Rare Disease Information Center, which happens to be right here in Gaithersburg. Surely, there’s an organization and specialty that’s willing to claim us!

There are 35 people in the FB support group. We represent 5 different countries. We are women. I have been told repeatedly by these women that they won’t do a study because the sample group is too spread out. There just aren’t enough of us “close by” to care.

As I chat with those in the support group, I am fearful of my own fate. Many of them are on disability because of #SweetsSynd. Is this where I’ll be in 10 years?

Sweet’s Rant

I don’t want lesions like Kim’s. It breaks my heart knowing there are so many going through even worse pain and embarrassment than me. The lesions I’ve had are bad enough. I really want you to share my blog posts. I hope I can use it to make a difference in the lives of Sweet’s patients.

You think when I plea for help and ask you to click a button or two that it’s doesn’t really mean much and won’t make a difference? 

I need you! Yes, I need you to care! Yes, I need you to do something that seems so insignificant to you. Although, truthfully, it’s not for me. It’s for you or someone else you may never know. It’s so this incredibly depressing, annoying, painful, exhausting, embarrassing, limiting and debilitating-in-so-many-ways disease doesn’t have to continue for decades for someone to get diagnosed and get treated as it has for most of the 35 in the Facebook support group I frequent. It’s so they don’t have to lose their jobs and/or go on disability to cope with the symptoms. It’s so these women in this group can get better care, more afforable prescriptions, not have to to pay thousands of dollars as they “try out” medications or so they won’t give up because they run out of money.

If we can get #SweetsSynd to show up as a trending topic on the internet, your clicking like AND your sharing every post about #SweetsSynd AND your using this simple hash tag, #SweetsSynd, all add up to making this campaign for awareness go viral!

Why awareness? We need research on it! If no one knows about it, no one will research it. We desperately need something other than Prednisone to combat this (more on the dreaded effects of Prednisone later).

I know this seems like a guilt trip. What it is is a smack in the face to bring us all back into reality–me included!

I was reminded last night that Sweets patients have a 1 in 5 chance of my #SweetsSynd developing into cancer. I have to have labs drawn ever 6 months just for that for 6-11 YEARS! That’s on top of all the other labs I have to have drawn. I’m doing labs every 2 weeks again now that I’m on CellCept.

I’ve always been crazy, but #SweetsSynd is driving me insane.

 

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