June and July

June was busy, and now we’re nearing the close of July already. Here’s a “quick” recap:

On June 13th I saw my rheumatologist for my biannual visit. He checked me for any signs of new autoimmune diseases and found none. I asked him about fibromyalgia, since the cervical and brain MRIs revealed no new information about burning forearms. (Well, the neurologist presumed small-fiber neuropathy and said that fibromyalgia isn’t her area.) 

My rheumatologist pressed on various places to see if I had tender points, asked me if I was depressed and said he didn’t think I was. I was surprised and bummed about cursory fibromyalgia assessment, because tender points pain isn’t used as the main measure anymore.

On June 17th, my husband and I went to Oregon to visit family and we saw The Princess Bride, under the sky, with a live orchestra at The Britt Festival. I highly recommend this experience if there’s one like it in your area. And by your area, I mean, it’s worth traveling to a neighboring state to experience this movie with a crowd of people who love it too.

On June 20th, I had my second upper endoscopy. My first one was in October 2020 at another hospital. Now that I have my own GI doctor, he wanted to see for himself what was going on in there and why my numbers aren’t coming down. I was very anxious and upset for my first one because they gave me this paper that went over the procedure and it stated that I might feel like I’m choking, and I didn’t really understand what the whole thing was going to be like. I got loaded with extra medication, was wheeled in, told to get on my side, and then I was waking up and someone was telling me it was over. This time, while still quite nervous, I wasn’t on the verge of panic. 

I was wheeled into the room and a very nice nurse (?) told me that it would be like taking a nap, I’d be going in and out, and I’d still be able to hear and follow directions. Okay, now that had me on the verge of panic. My doctor came in and checked in with me. I had to gargle some horrible stuff to numb my throat, “for thirty seconds or however long you can stand” that I gagged on when directed to swallow. Then medicine was going into my IV, and the nurse put this thing into my mouth that keeps my tongue out of the way and prevents me from biting the camera-tube. And also from swallowing very well. So I lay on my side, trying to breathe and swallow and not panic, and not knowing how I should feel that I didn’t remember this part from the first time. When was the camera-tube coming? Would I feel like I’m choking? Would I really hear and—then I was waking up and it was done. Geez. I feel like it would be better if they don’t tell you so much scary stuff because you don’t remember anything anyway. I don’t know whether I felt like I was choking or whether I could hear them and follow directions. It’s completely gone. Drugs are amazing and terrifying. Somehow I got dressed. Vaguely remember doing that.  My husband and a nurse took me to the elevator in a wheelchair and we had to wait for it a long time. I have absolutely zero memory of any of that. 

I was relieved it was over. The results showed almost no damage. But it turns out that your symptoms, your numbers, and the state of your intestines really don’t necessarily correlate. I find that so strange and maddening. Well, I’m an obvious example: high numbers, little damage. Nothing looked off about my throat either; I’d asked him to pay attention to that, if he could. This time I wasn’t sent home with color pictures or anything about mild chronic stomach inflammation or anything. I have a follow-up video visit next month.

On June 21st, I had my third osteomanipulation appointment. I still enjoy them, and she can tell a difference in my body, but I cannot. I don’t think having them once a month is very effective, and it’s really the stretches/exercises that she assigns that do anything. No surprises there.

Also in June, I did some work as a sensitivity reader for an ongoing project to update elementary reading material. I am really happy to get to do this kind of work. It’s a great feeling to know that my perspective is not only helpful, but valued. 

On July 1st, we moved! Across town. More on that in my next post.

On July 17th, I had an appointment with my PCP. I wanted to follow up with her about all these appointments and procedures: neurology, PMR, rheumatology, GI, etc. But really, I also wanted to ask for a prescription for an AFO for my left side. The one I got for the right does help a lot, and I was frustrated and mystified by that orthopedic doctor’s resistance to providing the same support for my weaker side. I wasn’t having the same pain on that side, so I understand that part of it. But now, now both my feet just hurt. Often and a lot. Did you know that arthritis can cause a burning sensation? I didn’t, until it occurred to me to look it up. Knowing that it’s probably “just” arthritis (along with whatever was originally going on on the right side) helps me just take it as it comes and not worry too much about, you know, feeling like I legitimately can’t walk sometimes.

I also talked to my doctor about my rheumatologist’s dismissal of possible fibromyalgia and depression, which are often linked. I told her about the two individual instances in the last four years where I felt markedly better, more awake/alive. Happy. Even though the chronic issues were still there. Sometimes you don’t know that you’re depressed until you catch a glimpse of another way of existing. We had talked about trying fibromyalgia medication before, after the gabapentin hadn’t done anything, so she was open to prescribing it.

Here’s what the NIH says about fibromyalgia. It very much feels like me, and yes, I do realize that these symptoms could also be from hundreds of other conditions.

The main symptoms of fibromyalgia are:

• Chronic, widespread pain throughout the body or at multiple sites. Pain is often felt in the arms, legs, head, chest, abdomen, back, and buttocks. People often describe it as aching, burning, or throbbing.
• Fatigue or an overwhelming feeling of being tired.
• Trouble sleeping.

Other symptoms may include:

• Muscle and joint stiffness.
• Tenderness to touch.
• Numbness or tingling in the arms and legs.
• Problems with concentrating, thinking clearly, and memory (sometimes called “fibro fog”).
• Heightened sensitivity to light, noise, odors, and temperature.
• Digestive issues, such as bloating or constipation.

I also told my doctor candidly that I had been on SSDI for a number of years before my five-year stint of part-time work. That I hadn’t returned to my job two years ago, and applied to receive disability again, but was denied. She told me to reapply. I confirmed that it was legitimate to put fibromyalgia on the application, even though I hadn’t started the medication yet (which, if it helped, would help confirm the diagnosis). She agreed and said that I should also put arthritis and assumed small-fiber neuropathy. Along with cerebral palsy, of course. The first time I qualified for disability, I was relieved but also a little insulted. I felt I could work but wasn’t getting hired. Now, I feel that I actually do qualify, and I really hope the government agrees with me. 

So that is where I am these days. All the big, nerve-racking, (expensive), procedures are over, and I’m left with management and maintenance, and a bit of hope that a new medication might, maybe this time, help a little.