Over Reactions

People with cutaneous mastocytosis tend to have “over reactions” to minor injuries. 

Below is mere seconds after my dogs nail ever so slightly ran across my leg.

I was really bloated and retaining a lot of fluid at this time. My skin hurt like a bruise  just to touching it. 

Immediately there was bruising, hives, and spots.

  
  

Mastocytosis Meds

These are some of some of the medications I take for Systemic Mastocytosis.

Unfortunately because there is no curative treatment for this rare genetic blood cancer, most symptoms need to be managed by medication.

It’s hard to stand up for that need when the majority of today’s society has turned against pills and pharmaceutical companies.

Yes I DO take a lot of medication.

I have a disease that effects every cell of my body every second of the day.

In order for me to function and have any kind of life, I need this medication.

Most of what I take is simply to keep me from going into anaphylactic shock every two to three days like I was right before diagnosis.

For those unfamiliar with what anaphylaxis is like for a Mast Cell patient, here’s a brief description…

Suddenly there’s a burning sensation in my stomach and guts. Not sure if I need to shit or throw up. Or both.

Then I feel super hot inside and start sweating profusely. Like dripping off my face within seconds.

I do throw up and shit at the same time, so there’s almost always a mess of some kind after.

Often I’m throwing up blood because of Mallory Weiss Syndrome and how much yakking I’ve done in recent years.

My heart is pounding so hard and loud, my whole body shakes violently and I start feeling myself black out.

This is when I go lay starfish on the floor. I haven’t cleaned myself up yet but I can’t. I just need to be still or I’ll pass out.

Then I start feeling my mouth go super dry and my heart pounding starts to subside somewhat. I get the shakes even worse.

Then I know I can call 911 and actually talk, so I dial.

I stutter out my address with some confusion and coaxing from the operator. “M-m-m-m-mast c-c-cell at-at-at-attack.”

That’s a brief run down. So you can see why I opt for taking pills daily instead.

I still get attacks. Just not nearly as much or nearly as bad. And I’ll gladly take that.

 

Hives Hives Everywhere a Hive

..do this, don’t do that or you’ll get a hiiiive.  

I’ll have to charge up old phones for pre-diagnosis hives that covered my face and arms on an almost daily basis. 

The following pictures are hives despite the comprehensive list of histamine blockers I’m on. A testament to the true nature of this disease. 

 

   
      

  

Keloids

Another aesthetically pleasing symptom of Ehlers Danlos Syndrome. Keloid scarring from faulty collagen. 

I call this one my “power button.” The immediate effects of pressing it are quite impressive I might say.  

  

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