Wednesday, April 22, 2009

It's Raining, It's Pouring...when do I get to be Normal?

Had 4 incredible days. I felt almost 'normal.' Then today my bubble burst. Began with itching, then gut pain, running to the loo because of the soup leaving my ass, spots under my skin on my chest and face began to surface (and now will stick around for a few weeks, making me look blotchy...and they'll continue to itch.) It's not worth scratching because there's never any relief. I'm not sleeping AGAIN...and it's pissing rain outside. I love rain. Why doesn't it like me?

I can breathe, thankfully.

Headache hitting me. Bone pain is unreal...especially in my legs and back. That place in my lower back, right side, was hurting this afternoon. I should've listened to it. Kidney? Adrenal gland? Gall bladder? Ugh...

It's my own fault. I went to the school (friend had a kid emergency), went to the hospital with them, then to WalMart and the Dollar Store for treats for this kid. I felt fine at the time. Almost normal. Tongue got fat but no distress.

I'm so tired of 'triggers'. I'm so angry with myself for being foolish enough to believe Tara that if I just willed this all to go away, that it would. I wanted to believe, I guess, that I could be in control of THIS, not it in control of me. I'm an idiot. For a scant 4 days, I almost believed it too.

What we know, now, is NOT to ignore these early warning signs. Pre-cursors to bigger reactions and imminent death. So now I have to be hyper-vigilant.

Tara exclaimed yesterday that she missed me, and that she "misses this!!!" (us, hanging out, with only her and her children to be concerned with, shopping, me helping her...) and for a scant few days, I bought into it. I guess the rotten truth is, my 'illness' is ok as long as it doesn't affect her. I hate this observation that has been made clear.

I need to take care of me first. Today and yesterday, I totally cared for other people, before caring for me, and here I am at just gone midnight in unbelievable bone pain, nauseated, diarrhea, itching like hell (when the Benadryl wears off) and no-one else is bothered. I feel like a selfish child right now. I want to blame Tara's insensitivity to all of this, but the truth is...I'm the only one in control of me. And, like my mother before me, I put the needs/wants of others (friends) before my own safety these past few days...and THAT is idiotic.

Lesson learned. Fortunatley, before Epi and a trip in the ambulance. Hope to keep it this way.

My husband is turning 40 May 1st, so I'm trying to plan a birthday party for him. It'll have to be here, at the house. What I like about parties is, I'm always totally happy if only I/We show up. If anyone else shows up, it's like gravy. Really good gravy. So, gravy would be nice. And if not...we'll have our own party. [insert warm fuzzies here.]

In the meantime...loads of love to Dawn and Emma who are having crappy Masto days, especially today. Lots of warmth to Carla and her family as they readjust to life after being in the hospital for 19 days straight with little Gavin.

As well, congratulations to The Canadian Mastocytosis Society for moving forward into awareness and the public domain. Carrie, who started this whole thing is an incredible woman, who's devoted many many hours of herSelf to Masto. awareness and support. Heck knows, we could all use it. She's a very humble woman being grateful for her and her work is all the more rewarding. Thanks Carrie!!!! You're awesome!!!!!!

To the rest of you/ careful, and much warmth to you for reaction free days.


Foxxy One said...

Oh you poor dear! I'm sorry that the rug got ripped out from under you. Please take care of yourself.

Anonymous said...

thanks. me too. I'm an idiot. Had to use epi about an hour I'm now sequestered to sitting, shaking as I type and wondering WHY I'm on the computer at this moment. Distraction, I think.

I passed out tonight after a bunch of 'almosts' and sitting down didn't even help...I don't understand this!!!!!!!!!!!!!!!

Right now it feels like a bear is on my chest. And I hurt. My bones and some of my lymph nodes (I think?) hurt so much. And I'm itchy....wah wah wah...

Hope you are having an infinitely better day.