I am feeling very discouraged right now.
That’s the only way to describe it, even though it’s actually much more than that.
My PCP called me at the end of last week, telling me that my Creatinine is up (more than it was two weeks ago), Liver Enzymes are up, white blood cell count is down, and anti-double stranded DNA is up (this is a test that measures lupus disease activity). As far as the liver and DNA go, they are both double what they should be.
Right now I feel like I’m fighting a losing battle.
Am I ever going to find a medication that I can be on safely?
What if we go through every possible drug and treatment and nothing works?
Part of me wants to say screw the meds. With the way I feel right now, I might as well not be on anything.
It’s hard enough to treat lupus or rheumatoid arthritis on their own, but together, these persnickety diseases are a force to be reckoned with.
I really don’t know what to do right now.
And my GI doc’s office is breathing down my neck for me to do a bowel cleanse, after my insurance declined a prior-authorization for Amitiza.
But how am I supposed to do that when my whole body hurts, I’m too tired to get out of bed, and when I do get out of bed, there are so many more harsher realities that I have to face?
I was told by my original PCP that there was nothing more she could do for me.
Am I going to hear that from my rheumatologist soon? That we’ve tried everything, and nothing seems to work the way that it’s supposed to?
I’m hurting right now, physically and emotionally.
I want to be strong, but I’m so tired. I’m so tired of feeling sick and tired.
I take my meds when I’m supposed to, even the Humira shot that makes me cringe. I try to eat healthy. I try to exercise, even when I’m feeling like crap.
But I just can’t win.
And we can’t get ahead of these illnesses. Just when we think we’ve found something…bang…we were wrong.
And it’s making me question the future.
I’m so confused right now. I have no answers and a thousand questions.
It’s easy not to question when you’re feeling good.
And in some ways, it should be somewhat validating when you aren’t feeling particularly well and the tests confirm that.
But now when I see a number that I know is an extension of my doctors, I don’t answer the phone. I just watch it ring, not wanting to hear the next piece of news they are about to deliver.
I’m definitely starting to believe that no news is good news.
And we’re in this stupid freaking holding pattern all over again. Go off meds and feel like crap. If the liver levels go back to normal, it was the meds. If not, well, than it could be something else. And it sucks! I hate it!
I’m not really sure what the goal of treatment is anymore. And I hate to sound that despondent, but I’ve been off treatments as much as I’ve been on them.
I just want to feel good. Right now I’d settle for okay, almost normal.
I really, truly believe that the best years of my life are ahead of me, and I want to be able to fully enjoy the positive moments. Because right now, I definitely feel like I’ve had my fill of the negative ones.