I don't like talking about my PD symptoms. It's depressing to verbalize and acknowledge them out loud or, worse yet, in writing, right out there for the world to see.
I'll tell you right up front, this is not going to be an uplifting post. Today is one of those days that I just need to put some raw feelings on paper. That's one of the reasons I publish this blog: to vent and pour out my heart without burdening those I love. Writing is good therapy for me; I can say all the things I try not to talk about with my family and friends. I can eventually face the realities of my disease. I publish a blog for times exactly like tonight. So here it is.
Even though I don't like talking about my symptoms, sometimes I just have to. So, yes, I'm going to go there now: my symptoms are worsening. My gait is worse, my manual dexterity has declined, I find myself walking in a forward, out of control manner I can only describe as staggering, and my balance is off.
The problem is that I have a difficult time with almost every medication. My neurologist has had me on every kind of pill, patch, and gel known to man, and I had reactions to every single one. One patch made me violently ill and caused vomiting, another gave me a rash, and yet another caused diarrhea. I finally tolerated Mirapex in low dosages, in spite of stomach pain and intense fatigue, so that's been my only medical remedy for the 3.5 years since diagnosis.
That's why it's scary to admit my symptoms...I don't know if I can tolerate medication to offset them. But there's one more medication I haven't tried -- one my doctor said is the gold standard in the treatment of Parkinson's Disease. He said he didn't want to start me on it before I needed it, but that he wouldn't withhold it at the cost of loss of lifestyle and livability. It seems that the last bastion of hope is Carbadopa/Levadopa. So I called my doctor and asked to add it to my regimen.
He prescribed it, and I began it today. I am sure I'm just letting my anxieties bubble over, but my stomach feels crampy, I'm tired, and I don't feel good. I've taken 3 pills this first day, and I'm scared to death that I won't be able to tolerate it; that I'm already experiencing the beginning of a reaction. What would I do then? Just let my symptoms increase until I'm incapacitated? At the rate I'm going, I'm afraid it won't take long. I'm only 55 and I feel like I should still have some good years left in me. I'm not ready to stop working, start using a cane, or start wearing my disability like a badge. I'm not ready to have PD.
I used to be a teacher, and I never let my students say this, but I'm going to say it now anyway: It's not fair. It's not fair! IT'S NOT FAIR!!
My husband and I attended a family picnic in a shelter we rented on a lake at an Indiana state park today. I told everyone to put on their praying shoes and pray hard for this medication to work, and for my body to tolerate it. If you're a praying person, I'd ask you to do the same.
I'm sorry for the rawness of this post, but sometimes you have to get real. This is my reality today. Thanks for "listening."
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