slowly she turned

I’m just starting to get the hang of this block editor, but I still haven’t figured out how to add the categories, which I have used since my first day of WordPress, and added to the old posts that I transferred over. I hope to add these to my newer posts one day since I find them very useful.

Dragged kicking and screaming into any new technological change, that’s me! I wouldn’t even use an answering machine for years, and I was one of the last people I know to get a cell phone that I actually used. You’d think that we’d be different in the O’Neill household, given our IT pasts, but my husband is even more of a Luddite with his phone. I never have liked the constantly connected culture, and I pretty much hate talking on the phone. From what I’ve read, that is common among introverts.

And the answering machine came in handy the week that an insane husband of a friend left threatening messages for me in the middle of the night. That little tape is still in a drawer somewhere. It stopped the phone calls when we informed his wife of its existence.

So anyway, I uploaded photos from the last week yesterday, and if you aren’t interested in our personal lives or my brain dump, you can stop right here and go back a post.

Our week began with Sandy again calling and calling the surgeon’s office to get them to send the lab results from his muscle biopsy to the rheumatologist’s office. Finally a staff member from the rheumatologist’s office got involved and got the results just in time for his appointment on Thursday. His biopsy was APRIL 1st. The results have been back for weeks. I never want to have any surgery from Central Carolina Surgery after this.

Anyway, it was not good news, but I didn’t expect good news, having done a lot of research on what the doctor suspected. The diagnosis is polymyositis, a rare auto-immune muscle inflammatory disease where the immune system attacks healthy muscle tissue and destroys it. Part of the reason it might be rare is that it is hard to diagnose without this muscle biopsy. It mimicked some symptoms of shingles so much that Sandy was absolutely convinced that all of his problems were from long term shingles. His GP diagnosed shingles as soon as she saw the rash. I’m still confused whether he actually had shingles or if the shingles was in addition to the polymyositis. The doctor did say he was sorry, that he knew that Sandy thought that it was shingles, and he asked him where the rash had appeared. Apparently a rash can be one of the symptoms of polymyositis.

Since Sandy is doing much better as far as his muscle weakness, they took some more blood to see what dosage of steroids he should be on. After about a month of steroids, his meds will be shifted to what they call steroid-sparing, because you can’t be on those good-feeling steroids for long.

I really want to have a one-on-one talk with his rheumatologist. Fortunately, they let me sit in on the appointment, because Sandy was an abused kid and his way of dealing with stress and bad news is to zone out and go into denial. He misses a lot of details. For instance, he thought that he wouldn’t be starting his medication until after his next appointment in June. He needs to start this asap.

I asked the doctor whether we could still take a trip to Europe in September, and he said that by then, Sandy should be able to do it. So that’s the good news! I’m so glad that we were both able to get vaccinated before he goes on immuno-suppressant drugs.

Also, this is the kind of disease that comes and goes into remission, and even though it is incurable, the meds should keep him in remission. Thank God for modern medicine.

Sandy started taking water aerobics classes at the Greensboro Aquatic Center a week ago, and this has been a very good thing. His instructor is also a massage therapist and he scheduled massages for both of us late Monday afternoon. That’s a nice thing to look forward to on a Monday, especially since I plan to do a lot of yard work this weekend. The weather is gorgeous.

In the meantime, I decided that it is time for me to get my shit in gear and re-enter the world. For an agoraphobic, this is more complicated than you would think. Agoraphobia is not what the general public thinks it is, which is why I had my own problems getting a diagnosis. I know the red flags when it is coming back, and my red flags started waving about a year ago. It is hard work staying ahead of this mental illness, but I don’t intend to get housebound again. I have even been avoiding the front porch, where I am sitting and writing this post right now.

I went to my GP and got my own lab work done, which I have been avoiding, and talked to her about my problems with my feet. She said that she was referring me to a podiatrist but I haven’t heard anything about that. If I need surgery for this cyst on my foot, I want it in time that I am over it before traveling to Europe. If not, it will have to wait until late October. It is far enough under my high arch that it isn’t painful. I also have Achilles tendinitis which makes me pretty hard for me to walk and disrupts my sleep. I think that will be more easily solved and it is the main issue. My lab work was about the same – high cholesterol but otherwise normal. I gained five pounds, no surprise. I need to get in better shape if I want to do a lot of walking in Ireland and Lisbon.

After Sandy’s appointment on Thursday, we went out to lunch at Kiasco on their patio, and when I mentioned how good he will feel on steroids, he said that he didn’t want to take any more drugs. This is a huge warning sign and once I got home I curled up in a little ball in my bedroom for a few hours. Sandy can be extremely stubborn and self-destructive if he makes up his mind about something, and won’t veer off that course even if he sees that he was wrong. I decided to give him a few days of space to get used to the idea, and have only mentioned the steroids and how much better he will feel a couple of times.

I can see that this is going to be a rough road for both of us emotionally and for me, mentally. So I made an appointment with my therapist for Tuesday afternoon. I’m actually feeling better than I did a year or so ago, or I wouldn’t have been able to make the appointment. I want to stay ahead of what my brain might mistakenly instruct me to do. And then, depending on what happens, I may ask him to go with me.

Maybe tomorrow I’ll write about my upcoming travel plans and the progress with the Back Forty, if any!

I thought I’d post a few of the photos from this week before I go on to my Saturday post tomorrow.

Here are Frida and Bernie in the big cage together. They were pretty stressed at first. Frida was adjusting to her new space and Bernie was thrilled to have a new playmate and wouldn’t leave her alone. Now they seem to be fine, although I notice that Frida closes her eyes a lot, as if she is tired.

Last Saturday afternoon we went to the department get-together at Oden Brewing, where there was a good band playing called Who I Are and a Korean bbq food truck with an amazing bulgogi cheesesteak. Yum, yum. Maybe the best food truck food I ever had – certainly the best cheesesteak sub. I loved the James Brown doll in front of the stage, and the new ESB at Oden is excellent.

I did get out the string trimmer (or weed whacker, as I prefer to call it) and cut most of the yard, at least until I ran out of electric cord. I worked on the new hugelkultur bed by shoveling in the dirt, potatoes, and one garden snake out of the whiskey barrel planter that was falling apart. I moved a lot of rocks around since I took this photo and made hugelkultur bed look less like a shallow grave. My niece won the comment of the day on Facebook when she said, “Where’s Uncle Sandy? Don’t say out in the garden!”

See that cement block wall in the background? I was over there taking a photo of the may pops and a little groundhog came out of the burrow on the other side to check me out. It rushed back in and is just out of the photo’s sight although I could still see it. My neighbor across the street has been feeding the groundhogs so there is not any hope of me getting rid of them. All the neighbors think that they are cute. I scream at them. Oh well. There is a red fox family around too. I think that I heard one bark the other night, and Sandy saw it in the same area. So nature might take care of the problem.

Leaving you with a foxglove and a snapdragon – the volunteers are many this year. Tomorrow I’ll probably have a lot to say, given our medical news this week and my travel plans evolving.

My neighbor is mowing his front yard and I feel envious. We don’t have a working mower at the moment, and even though I actually enjoy mowing and weed-whacking, it sets off my tendinitis. I’m considering getting the weed-whacker out anyway. The yard guy that I was so thrilled about came by when I was at the office on Thursday to mow and clean up the yard, but he couldn’t find a parking place so he left. So frustrating! The Back Forty is looking like a prairie, which I wouldn’t mind if it didn’t breed tiger mosquitoes.

There’s something about clearing paths and breaking trails that lights up my brain when I mow. Mowing was my job growing up, and I liked it so much that I would mow neighbor’s yards, the sides of the road, and the community building lot too. Now that I have hindsight, I guess that was one way that I coped with my anxiety.

This week was the last of the semester, and things should calm down for a while, but you never know these days. We used to go on vacation in May for this reason. This year our best-laid plan is to go to Ireland with a side trip to Lisbon, Portugal in September. Hopefully the EU will be open for us by then – it sounds like it is moving in that direction. I have good deals on AirBNB apartments in western Ireland (for a week!) and in downtown Lisbon, near the museums and the river in one of the arty neighborhoods. Both can be cancelled up to a week before the rental begins. I hope that my sister and brother-in-law will join us, but that’s beginning to look doubtful. In the meantime, we’ll probably go back to the lake once or twice in the next few months.

Beautiful weather today. Sunshine and breezes, high around 70. I’m glad that I can enjoy it because I had my second shingles vaccination late Thursday afternoon and it kicked my butt yesterday. I barely felt the shot, but afterward I barely slept and had a headache for about 24 hours, not to mention an extremely sore arm. Last night I finally fell asleep with an ice pack, slept for 12 hours, and awoke feeling good. Later we will go to a get-together for our department at Oden Brewing, which has a nice outside beer garden just around the corner from my house.

We moved Frida into the cage with Bernie yesterday. After trying to catch her (we never have handled her) we finally held her cage up to Bernie’s cage and opened the two doors between them. She flew into Bernie’s cage. It was that simple. They are both exhibiting stress behaviors and Bernie has been chasing Frida around more than she’d like, but otherwise they are getting along and were kissy-kissy this morning.

I have so much that I’d like to get done this weekend. I didn’t get any weaving done because I stabbed myself in the finger with a knife on Sunday! It didn’t hurt much, amazingly, but boy, did it bleed and I thought that I might have to get stitches because it was deep. Of course my vaso vagel syncope popped out and I had to lay on the kitchen floor for about 30 minutes. Sandy stayed with me and helped me. We did pretty good first aid because it has closed up nicely and hasn’t hurt much, but working in the yard and washing dishes and weaving were out for this week.  Hopefully I will have a few photos by tomorrow evening.