There’s a lot going on in my life right now.
I had a repeat colposcopy yesterday, a psychiatrist
appointment on the 1st, a kidney ultrasound on the 4th
and a follow-up appointment with my PCP on the 8th.
And I feel like shit.
If I wasn’t completely, totally, and utterly exhausted from
this flare, I’d be totally exhausted by the litany of appointments I have
coming up.
And the last colposcopy I had sent me into a four or five
day flare, so the fact that this procedure is happening right now is really
sucky.
Chronic illness is unpredictable. So is life.
But it hurts to walk, to breathe, you name it. Climbing the stairs to my third-floor walk-up
might as well be climbing Mount Everest right now.
I wonder how much of yourself you have to give up on this
chronic illness journey. It’s not just
about the blood they take and the biopsies and the litany of other
procedures.
At what point do you go from being yourself, a human being,
with thoughts and feelings, to just being a patient, a number, and nothing
more?
Right now I feel like a piece of meat.
I get poked and prodded, told things I don’t want to hear,
and I guess I’m supposed to sit there and take it, without showing emotion or
disdain.
This journey is hard, and some people make it harder.
I need a break from all this. The last few weeks have actually made me feel
like a sick person. And I don’t like
that. At 27 years old, there should be a
whole lot more to my life than doctors’ appointments, medical procedures, and
not feeling well.
And to some extent, there is. My family and friends are very supportive and
willing to help in any way they can. And
my boyfriend has been by my side every step of the way. So that’s not what’s missing in this
equation. What’s missing is some
relief. What’s missing is a medical
professional really taking a holistic approach and actually caring how I feel,
both physically and emotionally.
But that’s not what’s happening. Instead, I feel like a cow being led to
slaughter. And a human being, a person
shouldn’t have to feel that way.
For the first time in a long time, I feel damaged. I feel less than. And it’s not a good feeling at all.
Sorry to hear things are so rough. Have you talked to your doctor (any of them) about pain management? Even if the source of the pain is an underlying illness, if the doctors can't treat that illness they should be able to something about the pain.
ReplyDeleteAlso, what's up with the colonoscopies?
Thanks, Duncan! I haven't. They are trying to keep me at bay until the next round of labs in just under two weeks. Colposcopies. A gyno procedure. Something as a man you shouldn't ever have/I hope you don't have to go through.
ReplyDeleteHa - sorry. I read your post with full sinuses and one bleary eye, a little bit stoked up on cold medicine. I just couldn't read straight.
ReplyDeleteHi Leslie,
ReplyDeleteCuz I'm a doc I'm attending a family med review this week. One of the speakers said THE thing that makes a doctor GREAT is actually caring about their patients. Another speakers said, what we knew 100 years ago in medicine, we now know to be wrong. In another 100 years, we will know that everything we are doing now is wrong. But the thing that hasn't changed since Hippocrates is that the physician needs to have compassion.
One of the speakers referred to the "specialists" as the "partialists." Try that on one of your specialists, if they have a sense of humor.
As a doctor with chronic medical disease; my experience is pretty much the same as yours.
I really hate going to see doctors. It sounds like a good idea, I am hopeful they will figure everything it all out and I will feel like I did 10 years ago! But usually while I am waiting, my hopefulness recedes and I get an anxiety attack. Even for myself; sometimes I find doctors putting words in my mouth and it happens so fast they are already out of the room by the time I am ready to speak up for myself. (I know they are going throught their differential diagnosis and trying to make something stick). Hmmm.
It is wonderful that you have such a great support system! Your blogs always cheer me up, even when you are down, because I know I am not the only person who is going through this mess.
Fondly,
Judy
I know exactly where you are coming from right now!! I sit here fresh from my second ER visit this week..I have been flaring for 2 weeks and the pregnisone has inspired some amazing bronchitis. I am newly diagnosed and I just keep thinking, "A year ago I was living a mostly normal life. Now I can't even go outside during the day." I would love to say, stay strong my sister, but today I feel like the world has shit on both of us, so let's just say Damn lupus sucks!
ReplyDelete