I saw my doctor yesterday for my usual monthly follow up. We are down to 7.5 mg of Prednisone and I finally got the okay to continue weaning off them. We seem to be teetering on this point where I am not quite sick but not quite better. So he kind of just threw his hands in the air and said if I’m comfortable, to continue as planned and see where it goes. Because really, that’s all we can do at this point. He can’t physically see right now what’s happening in my body. Based on my blood work I seem to be holding up okay, but it’s always my symptoms that makes him have a bit more doubt.
My next infusion of Entyvio is supposed to be considered my therapeutic dose. As a result, the drug company has asked that after this dose I try going back to every 8 weeks. I couldn’t really say no because I am not paying for it, they are and I’m not about to burn any bridges with how expensive this drug is. But my doctor made it very clear that the minute I showed signs that I needed it sooner, they were going to come through and deliver it the minute he asked. We have gotten this far and I don’t think he wants to start taking steps back because they are worried about costs. Bless him.
But as I sat in his office, I started thinking back to the beginning of it all. Being there one year ago, meeting him and his nurse practitioner (who I don’t even see anymore because he’s taken on my case personally) and feeling so overwhelmed, but hopeful. Hopeful that life wouldn’t change that much.
Joke was on me.
Life changed so much in a year. I have vented about this so much. Because it’s unbelievable! And it’s only been a goddamn year! This is lifetime! This is commitment. I can’t even commit to my phone contracts never mind an illness. I don’t know if I’m ready for this kind of commitment.
So you wallow. And you let your “disease/drug induced depression” (as many professionals have so eloquently diagnosed me as….) consume you and you begin to do that thing of “what if”.
What if I wasn’t sick?
What if we could turn back time and I changed my diet?
What if it gets worse?
What if I eventually just get her all taken out?
What if I am never good enough to travel?
What if it never not hurts to poop?
What if I was just a different person one day?
What if I leave my job? Will other people be as understanding?
It could go on forever it seems.
How do you not ruminate? How do you tell yourself that this is okay? This isn’t that bad. We can champ through this like we have been. I feel myself getting to that state again where I am becoming my own worst enemy again. I know I need to snap out of it and start making changes now before it gets a little out of control, but I am just so tired. And steroids make me moody. Hopefully once I am off the steroids, I’ll be less like an emotionally stunted cat who doesn’t know if she wants to claw your face out for breathing in my vicinity or wants to be cuddled and loved.
But I am off to sleep!
2 thoughts on “Getting Caught in the “What if’s””
Actually, coming off the steroids was really tough for me–the exhaustion and aches/pains I felt as my body tried to adjust each time I dropped my dose made me very moody. But when I was your age it wasn’t nearly as bad so I’d expect you’ll bounce back quicker than I have. As of a week ago I am finally off ALL the drugs! I hope everything goes smoothly for you and this next dose of Entyvio makes a big difference! XO
Oh coming off steroids is never easy. I am so exhausted all the time and sleep with a heating pack for my back joint pain. Even putting on my jacket results in back spasm sometimes haha but I desperately want off so I just try and power through it. But congrats ! I hope things are going well for you 🤗❤
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