It’s a triple threat! Oh lordy I am in the worst flare. It’s almost midnight and I’m sitting here in my ratty bathrobe and I have been reading all the blogs that I follow…I have been neglecting this blog, but not on purpose!!! As my kids used to say, everything that happened was ‘not on purpose, it was on accident’, ah, that brings back memories. My kids are technically grown, I’ll just leave it at that 🙂 I think I’ll ask my son’s wife if he says it was on accident, he he.
OK, I feel the need to whine and kvech so here I go…This flare sucks! This disease sucks! I want my life back. I didn’t sign up for this. Why me? I have no control over my body, my body controls me. I hate crying. I hate feeling like a burden on my husband. I hate that my granddaughter saw me cry today (she’s 2 and she thought it was funny so at least I don’t have to worry about scarring her for life…) I hate being held hostage to the doctors ideas, or lately non-ideas~that’s ultimately worse. I hate having lost my job and along with that my insurance when I got sick. I hate paying almost 800 dollars a month in meds cost. I hate feeling guilty about being the one in the family that is bringing us down financially. I hate that I don’t have a car anymore and can’t drive. I hate that when I’m sick I mole-hole myself up in the house. I hate when I can’t make it up our stairs out of our room in the morning, and I hate that I’m weak enough to cry about that too. I hate my legs for burning and muscle clenches that would bring a horse down, I hate my burning and freezing cold hands and feet. I hate that when this happens I fall into a coma like sleep whether I want to or not. It all boils down to-no control. Who would ever have thought that they would wake up one day, not only feeling really shitty, but then come to realize, they have absolutely no control. ok, im winding down now. whew.
Friendship: My husband is my voice of reason, sometimes so much reason that I want to throw a shoe or a remote at him, whichever is closer. But it’s true. He’s always got my back. He goes to every visit that he possibly can ( I tend to clam up around docs like i was sitting in the principles office or something, they intimidate me-more therapy for me, yipee) and when I forget what I was going to say he says it for me, he tells the embarrassing stuff too. He is my rockstar. If they don’t want to go in the direction we think things should, he talks them into it. I think docs have a lot of patients that just listen to what they say and go home. I know I used to. Until I got sick with the disease called AUTOIMMUNITY. It can do whatever the heck it pleases, and I am the body that feels it all. So if the docs don’t want to hear me, the Big C tells them again. They have to listen to me, it’s my body. My quality of life. They aren’t at home with us watching my writhe in pain, trying to put the fire out on my legs, or trying to walk when my joints don’t want to, or trying to remember whatever the heck it is I was trying to remember. We learned real quick that we had to be our own champions and read read read!! As much legit information that we could get out hands on to stay on top of things. My favorite friend is my husband Big C. I love that man and he has stood right beside me through this whole awful ordeal with his arm around me and telling me that one day, it will be better. That’s just one of the many reasons I love him
Which brings to flatulence..ahh, funny word, idn’t it? Men. yep, Men. They love to rip em, smell em, they think they’re funny, and if they can get it to go up or down an octave you would’ve thought that the Steeler’s just got a touchdown starting at the 20. sigh. Sooo, Grampa can blow the bassoon. Gramma can too after chili night and blame it on Grampa. But my sweet baby granddaughter, who is ultra girly and polite with peeze and dankoo, let the biggest one rip today, it sounded like an elephant blowing. She looked at me, waited a beat and just busted out laughing right into Grampa’s arms.
That’s our girl. Through all the pain, she made my day.