So I should get this out of the way. As I mentioned in my anger post, fear is a feeling that I know far better than anger. I am angry about my PsA diagnosis, but far more fearful. Here are a few of those fears:
PsA is a degenerative disease – meaning my body’s plan is to keep breaking down. To what degree and at what pace is unknown. And don’t we all fear the unknown? I fear that I won’t be able to live a healthy, able-bodied life much longer. And I’m only 36. I fear that my condition will force me to leave my job and go on disability. And I love my job. I fear pain – and lots of it. I fear that my family/friends/coworkers will get tired of hearing about/dealing with my condition. I fear being judged when I park in handicap parking spots (even though I have a handicap parking pass) because you can’t tell by looking at me how much it hurts to walk through the parking lot. I fear missing out on work opportunities because of my pain and fatigue. I fear missing out on life opportunities because of my pain and fatigue. I fear that future tattoos I get might not heal properly. I feel getting a cold. I fear that I won’t be able to go geocaching with my nieces and nephews anymore. I fear walking down stairs cuz it fracking hurts. I fear deformity. I fear missing out. I fear dying young from a rare complication of PsA (they exist). I fear there will never be a cure.
I’m afraid that travel – something that many of my life goals/plans had been centered around – is going to be severely limited by my condition. My husband and I went to Vegas to celebrate my 36th birthday. I was on a Prednisone taper and feeling just about zero pain at the time. We did a lot of walking, as one is apt to do in Vegas, and suddenly – my left peroneal tendon (in my ankle) slipped out of place. What the damn hell?! Just walking down the Strip and my damn tendon shifted! I couldn’t put any weight on it and this is what the rest of the trip looked like:
Mobility scooter in Vegas, wheelchair escort through the airport, all the handicap parking.
I fear my medication. I inject 10mg of Methotrexate subcutaneously every Friday night. Cuz I know how to party. My dosage is scheduled to go up to 15 mg in a few weeks. Methotrexate (MTX) is a chemotherapy drug. For realz. A chemotherapy drug that is also used as an immunosuppresant to try to get my immune system to stop attacking itself. Or at least to quiet the attack down. I have to take 2mg of folic acid daily to prevent side effects such as mouth sores, nausea, hot flashes, dry mouth, fatigue and hair loss. These are just a few possible side effects of Methotrexate – they include almost anything right up to and including cancer as a possible side effect. That’s right, a chemotherapy drug with a possible side effect of cancer. Dafuq?
I’ve been taking MTX for a little over a month. It’s supposed to take up to 8 weeks to fully kick in, but I think it’s already helping a little. So that’s good! But I’m afraid of the side effects I might experience when my dosage gets bumped in a few weeks. And I’m even more afraid to start Humira at that same time, which is my rheumatologist’s current plan for me. I don’t even think I can handle an entirely new set of terrible side effects. I might ask her if I can wait a bit before adding it to the mix.
So those are my fears. My best friend always tells me how strong I am for facing my fears every day and doing what I want to do instead of letting them stop me. She always tells me that I am so strong, and that is nice. But I’m so tired of having to be strong all the time. It makes me very whiny. And sometimes weepy. And several other emojis. But when you’re tired of being tired, and your situation isn’t about to change, then you need a new perspective. So the Gratitude post is forthcoming.