It’s been a while…

It’s been a while since I’ve posted. My cats died. I’m going to start grad school in under 2 weeks. Physically, I don’t really feel any better.

I am battling hopelessness and despair along with pain. I’m pretty sure the lexapro I started taking for anxiety is the last tiny warrior staving off considerable depression. I envision a garden gnome in silver armor staring down a dragon.

I want to cling to optimism and hope. Originally, the doctors said that the goal for treatment was remission. I’ve been doing this for eight months, and there has been no major change in my symptoms since March.  Steroids worked – temporarily – but I can’t be on steroids all the time.  Acupuncture worked – temporarily. It’s not working so well anymore.  None of the long-term treatments have worked.

The original despair I felt at diagnosis was when I told my family in January “I’m going to have to give up backpacking.” I told them it would be too much on my hips, ankles, feet and lower back. I knew then that this integral part of who I am was turning into a ghost of the past.  The doctor said “Not necessarily, when we get you in remission, you should be able to do everything you did before.”

This morning my swelling and stiffness means I can barely flatten out my right hand.

I’ve stopped believing in remission. I’ve started seriously worrying about disfigurement. 

My inner pollyanna wants to remind me that it’s only been eight months. That I knew there would be a long period of trial and error with medications.  But that inner pollyanna is the same one who wrote “backpacking with dad?” on my calendar this summer, like it was a possibility. Fuck her.

I want to learn the lessons this disease has to teach me so that I can let it go. So it can let go of me.

What if there are no lessons? What if it just is?

I want to find the patterns so I know what my triggers are and I can avoid them.

What if there are no patterns? What if there’s nothing I can do – right or wrong?

I want to learn how to answer the question “How are you doing?” with something besides “Hanging in there.”  Because I am in pain all of the time, and I don’t know how to say that without sounding pathetic. I’m not hanging in there. I’m barely hanging on.

People ask me how I’m going to manage all of the travel and grad school coming up.

I smile and shrug and act cavalier and say “We’ll just have to find out.”

I have faced the possibility that I might have to drop out. That I might not be able to do it, even though it’s following my bliss and blah blah blah.  The truth is I have no idea until I try. I don’t know how I’m going to do it. Or if I can do it at all.

My mind has not slowed down. It’s whirring as fast as ever. It’s my body that doesn’t want to cooperate.

I sit at home and think of a million projects that I’d like to do. Painting, sanding, cleaning, organizing projects. That my body is unable to help me do. I can chip away at them. I have hired my stepson to do some. But it’s a long list. I’m hoping grad school might distract me a little from how badly I want to make this house a more pleasant place to be trapped day in and day out.

Oh, have I mentioned the cabin fever?

I go to doctor’s offices. Date night once a week. And that’s about it. That’s the sum total of my view of the outside world. I practically beg my husband to go places because I need to get out of the house.

I worked from Starbucks 2 weeks ago, that was an interesting experiment. I’d like to try that again.

I got my bike fixed for this purpose – so I could ride somewhere and get out of the house. I haven’t felt good enough to ride since the day after we brought it home.

I’m so excited about all of the travel coming up for this reason. Yes, it will be exhausting. But I won’t be in the house!

Like all things, it’s not all bad.

Here’s the thing. I have a ton of support. My family and friends are amazing. I am not alone in this. Also, there are good days and bad days. I’ve had a handful of days where I felt no pain at all. I’ve had a few days where I forgot about the pain, because it was so low.  And I’ve still had some wonderful experiences this year, in spite of the pain.

I managed to get my family to go hipcamping and whitewater rafting before school started. It was a blast. The outside time, the camping time really fed my soul. I slept for 2 days after we got back. I still hurt a lot while we were there. But by gum, I made it happen.

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That’s kind of what I expect grad school will be like. What I sort of expect life to keep being like going forward.

I’m going to do the things that make me happy regardless of the pain.

I’m going to try to plan and make smart decisions so I’m not stranded anywhere with my fatigue, but so I can still go do and experience the world the way I want to.

Remission might not ever happen, but that doesn’t mean I’m going to stop exploring. I just might have to get more creative about how I do it.

My body’s giving out.  I’m not giving up. I’m not giving in.

2 thoughts on “It’s been a while…

  1. Sending love your way.
    Something to think about — there are treatment centers that help you learn to live with chronic pain…they are expensive as hell, but it’s something to tuck in the back of your list when you really feel like you’ve hit a wall.

  2. Pingback: “Get Well Soon” vs. “Have you tried…?” | Alicia K. Anderson

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