Thursday, October 01, 2020

News From Our House - Oct. 1, 2020 - Taking Time Off

Hi, all! My husband and I are just back from a day trip to the beach for a late anniversary celebration (more on that below), a lovely little getaway. I have still not been feeling great, with far too many bad crash days, but we have enjoyed some good times in the past couple of weeks, too. 

Antivirals Update

I am still taking antivirals for reactivated HHV-6 (as explained in this post), and still struggling, though making a little progress. I had a lot of bad days in September, which was frustrating because it's my favorite month and the weather was finally better. I have worked up to a full dose of Famvir (famciclovir), which is one pill per day, after four months of gradually working up. Right from the start, I have had a pretty severe Herx reaction (a worsening that occurs when treating certain infections). 

My stamina is far, far below where it normally is. With treatments over the past 15 years, I was able to exercise again and had worked up (very gradually and only after treating exercise intolerance) to being able to walk most days, working out with weights (carefully, lying on the ground) three or four days a week, and being able to manage walking for up to 60-90 minutes on a good day! Recently, I have been in such bad shape that even just a slow 15-minute walk could cause a crash. That's a big downturn for me. 

Now that I am up to a full dose of antivirals, I am hoping to start seeing some improvements. I have walked a bit during some "days off" with my husband this past week (see below) with only minor repercussions, so I am hoping things are getting better. This has been going on since mid-March, seven months now, so it's been tough to deal with being incapacitated again after so many years of managing better.

Insurance Woes

I won't get into all the details of the whole, long, nasty story, but our son turned 26 this summer, so we had to apply to keep him on our health insurance. We'd been told by other parents that it was easy to do, so we weren't worried. We sent in our application ... and they rejected it. They said they agreed he was disabled but they thought he could support himself (what??). So, I spent a full week scrambling to collect doctor's letters, copy lab results, and write a 4-page letter from us, all to say that he can not work full-time right now and needs to stay on our insurance. Our appeal was approved and they overturned their first decision - wonderful, right? Except that was September 1, and it has taken a full month of never-ending phone calls to get them to correct their system so that it showed he was covered! We kept going back to the pharmacy to refill meds and being told he didn't have coverage. All just to say that it's been a difficult and very stressful process. And, yes, that was the short version!

U.S. parents, learn from us: If you have a disabled 25-year-old, get your application to keep him/her on your health insurance in as early as possible, to leave time for the bureaucratic mess that may follow! Ask your carrier for the forms.

Taking Time OFF

My husband has had his hands full since the pandemic began, between me not feeling well (and not being able to do much) and caring for his 95-year-old father and working full-time. Normally, we enjoy traveling with our pop-up camper--nice, slow-paced, relaxing road trips. This year, we haven't been able to travel at all, for all of these reasons: the pandemic, my condition, and not being able to leave my FIL (before we hired help, my husband had to go check on him two or three times a day!). But we do have help now (in-home care services who send someone to spend 3 hours with him on weekdays), so I was determined to somehow fit in some much-needed downtime for us.

Reading at our campsite

Last week, we took a little day-and-a-half camping trip to a nearby state park mid-week (to avoid the crowds and to go when we had extra help for dad). We left Tuesday evening and came back by lunchtime Thursday, and we did get some emergency calls on our only full day off (a broken tooth!). BUT, we managed to grab some very peaceful quiet time for ourselves outdoors.

Short walk to a secluded beach

It was a very relaxing trip. We slept in our camper, read a lot, took a short walk down to a nearby isolated beach, had a campfire, and just enjoyed the tranquility. The campground was almost empty, and being outdoors just immediately fills me with a sense of calm. Falling asleep with all our windows unzipped, listening to the sounds of the crickets and the water lapping against the rocks, was especially lovely.

Waking to the sounds and sights of nature!

We had this amazing waterfront campsite and thoroughly enjoyed the downtime and perfect weather with just the two of us.

Magnificent water view from our campsite

Today, we enjoyed another mini getaway. Our 31st anniversary was yesterday, so we got some take-out from a favorite restaurant locally last night, and today after breakfast, we drove to the beach (about 2 hours away). It was 4 hours of driving for just 3 hours there (we had to leave in time for my afternoon nap and to get home in time to check on his dad), but it was a lot of fun.

A short trip to the beach: I love the ocean!

We walked on the beach, which is my happy place! I love the ocean--the sound of the waves, the smell of the salt air, the horizon separating blue sea and blue sky. It was lovely and relaxing. Afterward, we had an outdoor lunch at a waterfront restaurant, took a very quick walk through town and returned home. Even the drive was nice since we have been missing our road trips!

Celebrating our anniversary today at the beach

Just these two tiny trips have really helped my emotional well-being. Between my bad crash and everything else going on, I was getting kind of down at times and really missing our camping trips and travel. Just doing something outside of your normal routine for an hour or two can really make a difference and provide an emotional lift. I wrote more about the lift that nature can provide in Weekly Inspiration: Outdoor Living (with more photos from our camping trip).

What I'm Reading and Watching

I am currently enjoying an annual fall reading challenge I do every year, #RIP XV, where you just read darker stuff in September and October: things like mystery, suspense, thriller, paranormal, etc. In September, I read a true crime book, The Feather Thief: Beauty, Obsession, and the Natural History Heist of the Century by Kirk Wallace Johnson. I read it for my book group (which just restarted meeting via Zoom), and like many book group choices, I probably wouldn't have chosen it myself but am so glad I read it! It's a fascinating, truth-is-stranger-than-fiction story of a young musician who broke into the British Natural History Museum and got away with priceless collections of birds. Everyone in our group loved it, and we had a lot to talk about! You can read my review at the link.

Now, I am immersed in a quiet suspense novel, The Lock Artist by Steve Hamilton, which won the Edgar Award for Best Novel in 2011. I gave it to my husband, and now I am enjoying it (the best kind of gift!). It's about a young man who can't speak and is an expert safecracker, and the story of how both of those things came about. So far, it's been engrossing and suspenseful, though it is a quiet kind of thriller, with no gore. I'm really enjoying it.

We enjoyed a movie this past weekend, Enola Holmes, which is new on Netflix. It's about Sherlock Holmes' much-younger sister, who shows some of his same cunning and courage when she runs away to London on h

er own to find her missing mother. Millie Bobby Brown (of Stranger Things fame) plays Enola, and she is wonderful in the role! It's a fun, light movie that we both enjoyed; you can read my full review and watch the trailer at the link.




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

Leave a comment below (most are coming through now), or 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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