The Fear Post

[junix]

Reposted from my blog catricorn.wordpress.com (+ all profanity filtered out)

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 fear 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 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 is that about?! Just walking down the Strip and my 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 15mg 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. How is this a real thing?

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.

[Grandma_J]

Hi junix! I just want to say I love all your posts. Also, hopefully you won't notice any side effects from Humira. The biologics seem to have the least complaints. Sorry to hear things have been so overwhelming for you, but you're on the right track towards improving your health. Good luck!

[junix]

Thank you, Grandma J! I'll see the rheumatologist in just a few hours, here's keeping my fingers metaphorically crossed! Metaphorically cuz, ya know, arthritis. ;)

[Sybil]

Hi there junix.

I think handling the fear and anxiety is a bit of an art form and one I've not yet mastered! I agree it needs to be acknowledged and dealt with and also that steeling ourselves a bit too much can be stressful in itself. I have times, which I try (and often fail) to keep private, when I let myself feel daunted and scared for a while just to give myself a bit of a break from trying so hard.

I'm not sure how accurate it is to refer to Mtx as a chemo drug. Sure, it is used for chemotherapy, but as I understand it that essentially involves large quantities of the drug. The amounts we take are tiddly by comparison and I think that makes it quite a different kettle of fish! I'm sorry you are seeing its mean side but that is not true for all of us and here's hoping your body adjusts. I doubt I'm in a minority of one and for me it is actually a feel good drug.

I don't suppose that 'toxic' is the correct medical word to use for PsA, but that's how I've come to see it. It can be terribly hard on the whole body and, on balance, for many of us the drugs are therefore the least worst option and can go some way, perhaps even a long way, to restoring overall health.

And good luck with Humira. Like Grandma J, I've found that biologics (I'm on Humira) are pretty much trouble-free. And Humira has helped me so much, hope this proves to be the same for you.