The Fear Post.

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:10383952_10153823575939813_4793874695335561226_n
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?

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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.┬áBut 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.