Thinking About Next Steps

All those negative feedback loops really caught up with me and I have found myself a bit deeper into the pit. I’ve been in therapy for a few months now and I like my therapist just fine, it just doesn’t feel like it’s helping. I’m doing my best to reach out to friends and keep up conversations with them but I don’t always have the spoons. I’m working on some new steps in my life but MS is throwing a wrench in some considerations.

The fatigue study has concluded and was really neat to participate in. It was something to look forward to each week and the nurse was fun to talk to. All the new information and education didn’t help me from sinking into a deep depression but it is helpful for planning my way out of it. Like I mentioned I’m back in therapy. Some moments it feels like it’s helpful and in other moments it feels like wasting my time. I’ve got a pretty well rounded toolbox of tools I’ve picked up over the years. I just have trouble using my tools in the moment or get overwhelmed trying to pick one out. 

Shannon and I are taking some time and space to disentangle. We have decided to release each other from the obligations and responsibilities from running a business together. Boundaries can get really fuzzy when you are living in a single room together and trying to run a business together. This is giving each of us a chance to rediscover ourselves and it feels good to actually have fun together again. 

I can see endless possibilities for next steps to take, but thinking about ideas doesn’t actually get me closer to getting anywhere. I’m going to get myself certified for technical writing. It seems like something I will be able to do from almost anywhere, just need a word processor and some wifi. It is a stable(isn) job, well as stable as freelance and contract work can be. I am going to try to give more time to writing in general. Baby steps right now, entering a few poetry contests but also working on some bigger projects little by little. 

A therapist once told me that dating someone with a chronic illness/pain is like adding another partner to the dance of the relationship. I was dating someone with fibromyalgia at the time and talking out new things I had to consider in regards to the relationship. The analogy of dance made sense in my brain. Using the analogy for myself I would say that I have become fairly adept at incorporating this new partner (MS) into my dance of life. I am pretty good at remembering to take my meds, I think I’ve only accidentally skipped two doses in almost a year. I’ve become better about listening to my body’s needs as they come up.

The place where having MS is causing some faltering steps in thinking about moving forward is health insurance. Right now I am on Medicaid and I am grateful because I could have racked up a lot of medical bills starting with the trip to the ER that led to my diagnosis back in 2018. Now the medication I take is not cheap. It starts to overwhelm me when I think about all the copays that would add up. Meds, routine blood work, and MRIs are only the tip of the iceberg. The only reason I can continue with therapy right now is because my insurance covers it.

My whole life I’ve only ever lived in Maryland (except for a few months of living in Virginia). Now would be a good time to live in another place for a couple years, but if I move to another state I lose my current insurance coverage. I would lose my neurologist at Johns Hopkins. I would lose therapy. I haven’t done the in-depth research yet about other states and their insurance programs but I have a feeling Maryland is going to be one of the better states. Giving up my current quality of care feels like a pretty big gamble right now, with my health and ultimately my life.