Tag Archives: Health

When I sat down to write my surgiversary update, I realized it had been over six months since my last post. I had planned at the first of the year to start posting updates at least weekly, if not more often. The best laid plans, and all that. Spoonie life makes it hard to juggle all the things you want to do. Energy reserves are limited, and even though sitting down and writing a few paragraphs doesn’t seem like it should take that much energy, even just remembering that you were going to do it, or getting up to get the keyboard for the iPad if you manage to remember, sometimes is too much.

I continue to love my job. I have been working on some exciting technology projects to expand healthcare interactions for patients into the digital space, which is super exciting. I also have an opportunity to move into an area of data governance which is actually a personal area of interest, so that will be exciting for me. Most people find it dull and tedious but I’m not most people. Working full-time means I have very little energy left for the rest of my life, and it’s hard reconciling that with my goals and aspirations. But it’s the reality for so many of us Spoonies. I keep reminding myself how lucky I am to be able to work full time and support my family because many Spoonies struggle with the basic necessities and access to healthcare because they can’t work or can’t work full-time.

As much as I wanted my focus word for the year to be “calm” it doesn't appear that is to be my fate for 2019. A few months ago, Hubby and I were vacationing with some very good friends and discussing challenges we’re facing, and it became ridiculously obvious that the answer to many of our challenges is to sell our house and move closer to friends, work, and other interests and rent at least for a few years. This means that we now are throwing ourselves into decluttering, packing, and house repairs so that we can get our house on the market and start looking for a rental in our target area. Not “calm” at all! Calm may be on the other side of this, but it sure isn’t here and now.

Health-wise, things seem to be settling down. (Superstitiously knocking on the nearest wood item available.) I have found a new rheumatologist, and I really like her. She’s young and isn’t blowing off my increased pain with the fibromyalgia. She repeated a lot of lab work that had been done several years ago and not repeated since, and has confirmed that the psoriatic arthritis is indeed still in remission. This is good news, because while I’m still in pain, it means that there’s likely no joint damage being done at this time. She’s given me some things to try to reduce the pain levels, and admonished me to stop avoiding the mild opioids I’ve been prescribed if I need them in order to do the mild exercising we both know I need in order to reduce the fibro pain.

So that's my life right now… working, recovering, working some more, and trying to get the house sorted, packed, and market ready when I can. Hoping to come up for air sometime soon.