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Saturday morning coffee pot post

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!

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