This Is Why I Don’t Gamble

tim-goedhart-334149.jpg

Photo by Tim Goedhart on Unsplash. [Image Description: The word “breathe” in neon script against a wall completely covered in ivy.]

Last week, we talked about the bumpy road I had to travel until I was finally diagnosed with psoriatic arthritis. Still waiting on the insurance company to approve Remicade. In the mean time, my rheumatologist has given me the go-ahead to start the Methotrexate and folic acid he prescribed at our last visit. I’ll be taking Methotrexate once a week in pill form and the folic acid instructions say once daily. By the time you read this, I’ll have already started both.

I’m not gonna lie, you guys, I’m a little nervous! Usually, when my doctors prescribe a new treatment or test, I’m like, “Yeah, sure, whatever ya gotta do,” but with this… I don’t know, it just feels heavier. I suppose it doesn’t help that everyone I’ve talked to so far has commented on what a serious drug Methotrexate is. My doctor has assured me that combined with the folic acid and Remicade, I should be fine. The goal with all of this new medication is to help relieve my pain and maybe even reverse some of the damage that showed up in the CAT scans of my lower back.

Remember how I said it took ten years for this diagnosis? I wasn’t exaggerating. It has been untreated and undiagnosed for half of my life. Can you imagine the mess that creates in a person’s body? I don’t have to because I’ve been living with it, of course, but you get my point.

I’m also nervous about how my crappy veins are supposed to hold up now that we’re going to be adding Remicade every 6-8 weeks to my list of monthly infusions. If you don’t already know, I started iron infusions last summer after my hematologist (the one out of state) saw how awful my levels had gotten. Just another thing that fell through the cracks during our journey to getting answers… I did try oral iron supplements back then, but my body couldn’t tolerate them.

Anyway, now I’m on monthly iron infusions coupled with a bag of saline. My arms never cooperate, so the nurses at the infusion place tend to go for my hands these days. The idea of a port has already been mentioned on three different occasions, usually while one of the nurses is slapping my hand to bring up a juicier vein. You can see why I’m a little apprehensive to add even more needle pokes to my monthly schedule…

Overall, just a lot of uncertainty going around and, I have to say, I’m not a fan. This is why I don’t gamble.

6 thoughts on “This Is Why I Don’t Gamble

  1. ribbonrx says:

    You have every right to be nervous! As a pharmacist, I can certainly tell you those drugs are powerful. But I really think the Remicade will help you feel so much better. I have two co-workers who get infusions every 6 weeks for different conditions (it’s a very ubiquitous drug, all things considered!) and they feel much better after their infusions. But don’t be surprised if around the 6-week mark, you start to feel crappy again as the drug gets out of your system. With your vein issues, I think a port is something that needs to be taken into strong consideration. Are any of your doctors aware of your (vein) access issues?

    As for methotrexate, I have yet another co-worker (several of us are walking disasters, honestly) who takes it like you do but for RA. She gets canker sores from it quite a bit and tends to be more prone to illness. If that seems to be a problem for you, maybe wear a mask when you go in for your infusions. Be sure to keep up with labs, like liver function tests. To be quite frank, make sure you’re on the pill if you are having relations with a guy because pregnancy is a no-no on methotrexate.

    I know this must be so scary for you! A whole new diagnosis and big medication changes. But you’re tough, and I really think you’re going to be feeling a lot better soon! 🙂

    Liked by 1 person

    • ChronicallyDannie says:

      It’s such a relief to hear your coworkers are experiencing positive results (for both)! As for the port, I’m not sure if they do, to be honest. I’m sure I’ve mentioned it at some point with all of them, but most of them are kind of scatter brained, so who knows if they’d remember! 😅 I’m going to do more research on ports and discuss it with my mom before we bring it up with them. Not so much worried about the surgery part, but how hEDS factors in, because I’ve heard there can be complications there.

      Thank you for taking the time! 💕 Especially with the labs because my doctor didn’t mention it. Perpetually single, though, so no worries on the pregnancy front! 😂

      Liked by 1 person

  2. Alyssa - Queerly Texan says:

    I too feel a difference between being prescribed medication when doctors still don’t know for sure what’s wrong or when you know they’re missing something vs. when you’ve been diagnosed with something new or the possibility of something new. For me it comes down to hope. When they have no clue what’s going on, and just throw a new med at my problems I always think, “I’ll try the med, it won’t work, they’ll up the dose, I’ll have side effects, they’ll stop the med, and repeat.” However when there is an actual possibility something may be helpful I feel uneasy and antsy. A million questions run through my mind. What if it works? What if it doesn’t? Are there any other options of it doesn’t? Hope is scary and not something I often let myself feel, but sometimes you just can’t help it. I really hope the new meds work for you, and you can get the vein situation figured out!

    Liked by 1 person

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