Thursday, August 20, 2020

News from Our House - August 20, 2020 - Another Crisis

We're experiencing another hectic, crisis-filled week here, but I wanted to take a few moments out for a quick update: I am still here and still interested in hearing how all of you are doing!

A New Crisis Pops Up

As I reported in my update two weeks ago, we lost power for two days when a tropical storm came through and then, last week, we lost power again for five days (while it got hotter and more humid!) and both of our laptops quit working on the same day, the day the electric was finally restored. I just got my laptop back this Sunday--almost six days and $280 to tighten up some cables! I was ready to finally catch up (I hadn't been able to get reliably online for two weeks at this point and had--still have--700 unread e-mails) and get some work done when another crisis hit.

Our son turned 26 this week. This is a big milestone in the U.S. because adult children are allowed to stay on their parents' health insurance until age 26 (thank you, Affordable Care Act!). We knew this deadline was coming, and our son is unfortunately still not well enough to live independently, so we submitted the proper forms from us and his doctor to keep him on our insurance. Much to our surprise, our insurance company agreed that he's disabled but concluded he could support himself! With that conclusion, his health insurance expires on August 31, and we would be forced to purchase a separate policy for him in the open market. This is a big deal because the health insurance through my husband's job is excellent, partly subsidized, and we have had it for 30+ years.

So, this week had one goal and one job to get done: prepare and submit an appeal for the insurance company. I focused all of my writing time on a letter from us, his parents, describing his symptoms, level of daily functioning, etc. I also spent a lot of time e-mailing and working with four of his doctors to get supportive letters from them. In short, it's been an all-consuming and very stressful project.

Yesterday, I hit an unexpected issue. In trying to convince the insurance company how bad off my son really is and how incapable he is of supporting himself, I got really depressed. My husband and I were both in tears. We normally try to stay very optimistic. If you read this blog, you know I am always looking for new treatments and ways to help our son. I have a very can-do attitude. As for our son, all he wants in the world--like all of us--is simply to live a normal life: to be well enough to live independently, earn a living and support himself, and get on with his adult life. That's impossible right now, but we try to remain optimistic that we can further improve his condition, especially after a serious relapse last year. So, to have to focus on the negative side and prove to them that he can not support himself just really got to me. I turned, as I always do, to our wonderful group for Parents of sick kids, and, as always, they provided much needed compassion, understanding, support, and practical help. If you have a child, teen, or dependent adult child with ME/CFS and/or related conditions, check out our group at the link (if you want to join, be sure to answer the questions that pop up after clicking "join").

My Health Improves

Ironically, in the midst of all these crises and stresses, I am feeling better than I have for five months! You may recall from my previous two updates that I had relapsed back in March, without knowing why. My doctor found that HHV-6, a common virus, was again reactivated in my body (this is a very common occurrence in those with ME/CFS, that normally dormant viruses became reactivated). In response, she put me on an antiviral, Famvir, that has worked well in the past for me. For the first two months, though, I struggled with Herxing (a temporary worsening as the meds kill off the virus, flooding the bloodstream with it, and setting off an immune reaction). I finally got the dosing right and got past the Herxing stage, I guess, because I have actually felt good recently! In spite of all the stress, my energy has been good, and I feel back to my "normal" baseline (which means still needing a nap in the afternoon but functioning fairly well otherwise). I have even been able to get back to exercising, both my weight/muscle routines and now that the weather has cooled off a bit, walking more regularly. What a relief!

What I'm Reading and Watching
(links are to my own reviews, where available)

I am still reading David Copperfield by Charles Dickens and loving it! I read a lot of Dickens in high school and always enjoyed his novels. Last summer, I re-read Great Expectations (listening to it on audio) and really enjoyed it, often laughing out loud as I walked around my neighborhood with my earbuds in! David Copperfield  is similarly funny, warm, and touching. It's easy to see why Dickens is a classic--he has such a way with words! So many of his sentences just stop me in my tracks because they are so clever and such a perfect way to say something, often with humor. It's also a wonderful story, with so many unexpected twists. On audio, I am still listening to American Dirt by Jeanine Cummins, a novel about a Mexican mother and son who must go on the run after a drug cartel kills their entire family. It's excellent so far, riveting and fast-paced.

On TV, we just finished what's available of two of our favorite shows, season 4 of Better Call Saul, and season 2 of Sex Education. Both have that perfect mix of warmth, humor, and compelling (though very different) plots. Fortunately, season five of Saul already finished airing on TV, so it should be coming to Netflix (soon, I hope), and Sex Ed just announced a third season. We are also watching the surprise second season of The Alienist (currently airing on TNT), Yellowstone (new to us but we are enjoying it), Lie to Me, a unique crime drama about lying, and the third season of In the Dark, an excellent suspense/crime show about a blind woman who witnesses a murder. Oh, and we just started Halt and Catch Fire, about the massive changes in the computer industry in the mid-80's--it's just as great as everyone has said! Review to come on that one.

How are YOU doing this week?
And what are you reading, watching, and enjoying?

I am happy to report that my problems with comments not showing up on this blog are partially improved--many more are showing up now after a change to the settings. They are still not all coming through, but give it a try! You can also comment or chat with me on Twitter or at my Facebook page. I will post the link to this blog post in both places.

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