Return of the Vasculitis Flare

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The red bumps with holes are new Churg Strauss Syndrome vasculitis rashes and the discoloration and scars you see on my skin are from older rashes they leave you looking like a leopard.

 

Today as I awoke from a sleeping in a solid 4 hours, yes that’s a good amount for me and feels quite restful, I found myself still wearing my Ohio State Buckeyes jersey from last night. I’d been watching the Sugar Bowl in which the Buckeyes played Alabama in the College Football Playoffs and I must say it was a thrilling game. It was so close I almost had a heart attack (I joke I joke) but seriously I needed to be on the O2 towards the end that’s how excited I became that we would win this with the team’s third string Quarterback. Anyway today’s little story begins when I entered the shower to get clean for the day and freshen up before typing this article.

I got more than I bargained for though normally that means falling down into the tub and hitting my head on the tile. Or that means vomiting which also happened today in the shower due to the warm water but I am used to it by now I do that at least 4 times each day and no doctor seems to want to deal with it. It isn’t a GI issue I’ve been checked from top to bottom with biopsies, but the headache doctor says it’s too often for that, and the rheumatology specialist says it cannot be this extremely rare case of vasculitis….though I don’t know how you can rule it out as being a rare symptom when he’s only seen 100 people with my condition and he’s the head of Johns Hopkins Vasculitis Center! Anyways nobody wants to deal with my GI issues so I will probably be smoking marijuana to choke down 1 sad meal a day just so I can take my chemotherapy medication. I’m sick of smoking, sick of technically being a criminal in my own home, sick of putting myself and my parents at a legal risk. However right now there’s no other way for me to keep moving forward so my doctors and parents are on board with the cannabis usage, keep in mind I’m responsible and only use it as medication never just to get “high”.

Let’s get to what happened today though I was scrubbing my body down with body wash when I notice some blood on my wash cloth so I turn my arm and it’s painful to twist, I didn’t have contact lenses in so I couldn’t see. So I put my right hand over my left forearm and oh my lord the pain I felt was dreadful! I yelped and as soon as I felt the swelling I looked down putting my face close and instantly knew what these 3 bleeding bumps were. I began to hold back tears and an overwhelming feeling of that cloak of depression enveloping me. I wouldn’t let it I said this New Year I’d fight. So I am worried about this but I stayed strong and didn’t let my emotions pour out. Instead I decided this would be my story for the day since I also write about Vasculitis and people might be able to relate to this or so I hope.

I honestly am just hoping that these rashes don’t spread or become bigger and open up. I’ve both seen and had some nasty open wounds from vasculitis especially Churg Strauss Syndrome and I certainly don’t need that right now especially as I’m making such good progress with my book. The picture at the top of the page are the 3 rashes about 8 or 9 small holes all bundles up in 3’s hopefully they’ll just turn into scars or disappear on me, I have to be optimistic about this. Thank you for reading and I appreciate all of you. I hope you’re all off to a good start to 2015 and a happy/healthy New Year! Best wishes to you all and have a wonderful day!

5 thoughts on “Return of the Vasculitis Flare

    • I think there are already signs ive been felling down for about a week 3-4 times a day. Now i have to come doen the stairs on my butt step by step ot have some in front and behind me. Ive also been voniting more often now. Hoping this doesnt land me in thr hospital.

  1. Mike you have beat it before and will again. just a reminder we will be up on the8th to stay the weekend, Gmom & Gpop, let me know if you want anything.

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