Hello. It’s been awhile

I got some time away at the beach. 5 days away was exactly what I needed to rejuvenate—or so I thought. The picture is my holding the infusion pump I use weekly to self infuse immune globulin to manage multiple neurological autoimmune diseases. I did feel good at the beach. I was able to take walks with my crutches and swim in the heated salt water pool. I wasn’t swimming for exercise, I let my inner child swim and was suddenly my very adult self playing like I was 7 diving down to the bottom of the 8 foot pool transformed into a mermaid just because it was fun.

While you can take a break from your problems, you can’t escape them. It’s a heavy week this week with visits to my neurologist where I need to discuss my myasthenia gravis and other hard subjects. I also head to the neurosurgeon Wednesday where I’ve been avoiding a neck fusion for almost a year. He has also mentioned fusing my upper thoracic spine. The following week, I see my GI doctor who is strongly proposing I go to a major medical center 4 hours away for an invasive surgery to help eliminate the debilitating nausea from my gastroparesis.

What does someone do with all these decisions? Well, I went to the beach as a respite. I have a full time job hopefully making a difference for people with life altering health diagnoses. There was work in between my mermaid time and being mesmerized by waves that never stop.

And I still did an infusion even though I went away to sort of forget I’m a sick person, but my infusion pump follows me everywhere. While it’s a hassle and find myself often bemoaning it, I recognize that I am receiving life saving treatment. There’s a certain ironic beauty in it.

I suspect I’m managing a sacroiliac joint dysfunction. I’m used to chronic pain. This new pain is unrelenting and debilitating, thus I’m writing a blog post at 1:30 on the morning as I can’t sleep with the pain. It feels like I’m simultaneously being stabbed in the groin and left glute while also managing an ache I can’t describe. I do have a disc herniation at L5-S1. I suspect it has gotten worse. I’ve been doing constant stretching and yoga. The pain still brings me to tears as I simply question, “why??”

It’s an image of doing a yoga stretch. I’m crying not because the stretch hurt, it was actually that sort of good hurt, but the tears come from fighting a health battle I’ll never win. I can eat healthy, exercise, do absolutely everything I’m supposed to be doing, yet I’ll always be sick. I have multiple progressive diseases and sometimes that reality hits hard.

The good is I did get away. The respite at the beach was a true time to enjoy. Having a phenomenal job means I can take the luxury and as most of my work is done virtually, I can go away for awhile and just be, even with my laptop in tow. I do have a wonderful job that sometimes I think I can keep up, other times, I’m not as sure. Yet, I keep trying.

It’s a strange reality to be so sick and employed. I have been given a lot of accommodations to make it happen for me. For the first time in my life, I feel like my ideas and insight are useful and appreciated. I’m not afraid to speak up. If my employer doesn’t like the work I do, I’ll be told respectfully and with honor. It’s very different than how I’ve lived my whole life.

And for all of that, I suppose it’s good. I’ll keep plugging away at my job and life sometimes confident, sometimes floundering. I’ll take it for now making whatever this is I’m doing work.

Another blogger read my blog a couple years ago who reached out via email. It’s turned into a long distance friendship of equally honoring how hard life can be without the support of a family. I value his presence in my life regardless if we see things the same politically or socially. Sometimes those of us left wandering with faithful canine companions by our side only need to recognize some of us are “self made” even if it doesn’t mean we are millionaires or famous. We made it being loving and kind. Also a big happy birthday to him today.

These are my faithful canine companions slightly irritated to be woken at midnight, yet they still love me. Surgery decisions are hard. I will make them alone enlisting the help of a small few to get me through the recovery phase.

Trauma recovery isn’t about having family or even creating a supportive chosen family. It’s about knowing I’m a good person of value regardless of having an important job, good health, contributing hugely to the world… My recovery has been knowing just as people have touched my life, I have touched others. It’s all I could hope for. 😊



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