May 24, 2016

Boring Medical Updates and a Depressing Poem

This body, man. At least I still have my sense of humor.

I had a Benlysta infusion yesterday so hopefully that kicks in soon. It started wearing off last week and now I feel awful. I'm waiting on a gastro referral. I saw the ophthalmologist today and have new stuff to try on the Angry Eyes. She wants to throw hormone therapy at them (testosterone eyeballs!) but the FDA hasn't approved it. So it's antibiotics and steroid drops instead.

I'm taking the rest of the week off from my medical stuff. I need a break.


As promised, a poem:

Why do you think I am well?
Because you don't see joint pain sparking and incandescent behind my eyes.
Because I hide the animal, all tooth and claw, fighting in my abdomen.
Because I smile despite the nails in my jaw,
move against the lead in my blood,
speak through sleepless nights and long lonely days.

Illness petrifies my life but
you see familiar silhouettes and are satisfied.

She is well.

May 19, 2016

How to be a Superhero

Yesterday my hand pain was so high it almost brought me to tears. Despite that, I attended a new knitting group. On the way home I stopped and climbed the Volunteer Park water tower as the sun was setting. It was beautiful!
The sun sets behind the Olympic mountains
Then I got home and did laundry--before Benlysta even one of the day's tasks would have been too much for me.

Today I drove to Olympia to visit a friend whose very ill husband is in the hospital. We were good friends already, but today she said I'm one of her best friends. That is an honor to hear, to be allowed into someone's life and heart like that. Knitting is such a great hobby in these situations: you can just sit and knit and talk. We also checked out a nearby bakery and bought almost one of everything ;)

Chronic illness has taken a lot from me but it's given greater compassion and understanding. I also have days free, when fatigue allows, to spend with friends. These are amazing gifts, however painfully earned. I feel superheroic successfully battling the forces of grief and isolation.

May 10, 2016

Deflated

Yesterday was a particularly difficult Monday. A guy I'd been seeing, who was enthusiastic just the night before, ended things. And in a confusing way. But since communication issues were the cause I guess I shouldn't feel surprised. Rejection still sucks.

Two friends are going through difficult things, so today and tomorrow I have missions of friendship to carry out. I enjoy being able to help others. It's frustrating, though, to be capable enough that people rarely ask how I'm doing. I'm doing better at reaching out at least.

Physically I'm not doing great: my weight is down 5 lbs in a couple weeks, which I only realized when all my clothes stopped fitting. Nausea and GI pain have made eating particularly difficult, but I'm trying harder. My energy level is still pretty high though :)

Here's a silly photo of my cats to carry you through the week.

This little piggy sees the vet today

April 20, 2016

Blog Makeover

I updated some of the descriptions and links to better reflect what I'm actually posting. And what my life is about. I initially said that it's long overdue, and it is, but that's not a kind way to talk to myself.

I've started with links to RA blogs, because that's what I found. There aren't very many people with Undifferentiated Connective Tissue Disease (my most recent diagnosis) to begin with, and most of those aren't much up to writing. I know the feeling. And if you google "autoimmune disease blogs" you get freaking Sarah Wilson boasting that quitting sugar cures everything. Thank you The Katering Show for a proper response!

I'm continuing to reach out to fellow autoimmune folks, locally and online. Meet the Arthritis National Research Foundation's latest #CureArthritis team member :) I'm also making new friends and assembling a support system can actually help support me. As well as hammering it into my head that needing support is healthy and normal.

April 17, 2016

Dumped

I'd been seeing someone since Jan. Things were going well, not fabulously but well. He was sending some mixed signals but stress could've explained that. Until what I thought was our Thursday date night turned out to be me getting dumped.

As far as dumpings go it was ok. There was focus on it not being due to my poor health, his emotional baggage is the issue. Ironically, I'm the healthy one in that respect. But it's been a hard couple weeks. The same night I also heard about a family member's health issue, that's still pending.

I've been thinking a lot lately about my future. It's scary. We're having a beautiful weekend in Seattle and all those thoughts are chasing themselves around my brain. Maybe I can still shower and get out in the sun a little this afternoon. That would be a pleasant distraction.
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