This is a two part series, this post is part 1 and provides an update on what’s been going on with me lately. Feel free to skip straight to part 2, Cancer Diagnosis, if you’re up to date on the other stuff going on in my life.

Big picture recap:

• July 2022: first covid infection, never got better. 
• Slowly added lots of new symptoms that are all associated with long covid.
• First year of long covid I saw lots of doctors, did loads of tests, acquired many diagnoses, and started some treatments.
• Second year of long covid most doctors had already reached the end of their knowledge and basically said I had to wait until the research caught up. So I participated in a bunch of research studies and tried out some other treatments. 
• Third year of long covid (which wraps up at the end of this month) has been much more about adapting to living with chronic illness, while still pursuing treatments with doctors who have any ideas left.

In February of 2025 I needed my “as needed” migraine meds 14 out of 28 days. The weather was constantly swinging from high to low pressure and then back again. My fatigue was worse in the cold because my body struggles with all forms of energy and staying warm uses a lot of energy. My pain was also worse with cold, tight muscles. I spent a week in Florida where I felt significantly better from a cold/pain/fatigue perspective, Florida did not help with the migraine situation. Once I realized that even 72 degrees and humid was still rather chilly for my body (I was sitting by the pool dressed in long sleeves and pants, using a towel as a blanket, while other people were lounging in bathing suits!) I was committed to the 2024-2025 winter being my last one in New England. 

I reached out to friends and colleagues in Arizona and started planning my move. I spent a week in Arizona with my mom checking out neighborhoods around Phoenix. We went through all my belongings to minimize what would get shipped across the country. Posted on my local buy nothing Facebook group and distributed items to more than 40 families in my town (lots of messages coordinating pick up!). I scheduled condo repairs and updates and was about to put the place on the market when we got a ton of rain that then leaked through the windows. I scheduled more repairs and updates. Put the condo on the market and made plans to move myself, my dog, my car, and the rest of my stuff thousands of miles away. 

Meanwhile:

• February: long term disability declares me able to work full time (based on no actual evidence), start finding a lawyer to help file an appeal.
• April: my daughter and her boyfriend moved out of the condo we were sharing. Dog starts having a lot more anxiety. Still working on disability appeal.
• May: get laid off from my job (I’d been working ~10 hours per week). Dog still has anxiety, still working on disability appeal.
• June: learn it’s very difficult to find a rental when I have no income and my dog is a pit bull mix. Dog still has anxiety, still working on disability appeal.

Despite disability insurance declaring me magically healed, I’m not, so I’m doing all this with about 4 hours available per day to do anything (the rest of the time I’m asleep or resting which means horizontal and nothing that requires too much concentration). I have to budget my physical, mental, and emotional exertion. Coordinating is mentally taxing and waiting for other people to help with the things I can’t do is stressful when I want to just get things done!

So that sets the stage. The last 6 months have been a lot. And… all that effort felt worth it because I was really looking forward to moving to my own place with a fenced in yard where it’s sunny all the time and once we survived the scorching months, it would be warm all the time too!

Click here for part 2!