Health Update

It’s been a while since I’ve posted an update on my health and wanted to get you up to date. A lot is happening in my life right now and hopefully, I’ll have more answers at the end of the month when I see a new Rheumatologist.

My Hypogammaglobulinemia

I had a follow-up meeting with my Immunologist last month and discovered that insurance will not pay for Antibody Infusion Treatments until you’ve been on antibiotics four times in a year. You have to be sick first. I understand insurance companies have to make money and are not a charity. I did have an ear infection so he put me on an antibiotic. There’s no reason to see him again until I get sick. There’s one doctor down.

My Tardive Dyskinesia

I’m in the approval process for my prescription Ingrezza for my Tardive Dyskinesia. It’s $7,500 a month so the approval process takes a little longer. I’m blessed with good insurance who is covering 100% of the cost.

Tardive Dyskinesia is a serious side effect of taking anti-psychotic medication. I’ve taken them for close to 30 years so I’ve been very lucky to not get TD before now. Not only is TD hard to deal with it also means that I can no longer antipsychotic medications which have been essential for my Bipolar Disorder.

My TD is in the mouth, so my tongue is constantly pushing on my teeth, rolling across my teeth and gums. It’s very painful, my gums are raw, my jaw hurts, and my head hurts.

The most common side effects of Ingrezza are sleepiness and a fall hazard. The more serious side effects  I’ll worry about if they show up. I hope to start the medication next week.

Fibromyalgia and/or other

As I mentioned, I’m seeing a new Rheumatologist at the end of the month. It culminated from having swollen salivary glands. This can point to an autoimmune disorder, possibly Lupus. Although I don’t have the classic butterfly rash, I do have many of the symptoms. I’m not going in with a diagnosis because I have many other issues going on with my legs that are progressively getting worse. My hips and shoulders have become so painful that I can only sleep for 2-3 hours before I wake up and have to turn over. Then I’m awake and have to start the process all over.

The muscles in my legs are either having spasms or tied in knots making it hard to sleep or walk. I wake up and can hardly walk because they are so tight. This appointment was made three months ago, so I’ve been keeping a log of all the symptoms by area of the body. This will help when I see the doctor.

I’m now four times vaccinated and still taking all the same precautions. Since Covid started I’ve only talked with one person without a mask and they were several feet away. I hope you’ve taken your vaccinations and staying safe.

I hope you are healthy and happy.




  1. I’m sorry that your insurance won’t cover the cost of antibody infusion treatment. That sucks. I imagine that could cost a fortune on its own, too. How’s your ear now after the infection? I hope that’s resolved. And on the plus side, at least your insurance actually does cover Ingrezza, which is brilliant. I’ll keep my fingers crossed for you that it’s beneficial. I’ll have to Google it to learn more as it’s not one I’ve come across before.

    As for Covid, I don’t know what to do now. I just worry about my parents but with no safety measures in place and nobody else wearing a mask, it feels like my constant fretting over it all and constant antibacterial cleaning of everything including groceries is a bit pointless. I hope your four jabs give you the best protection possible. It’s what I’m hoping for my parents too. I don’t think we can keep going the way we are for much longer. I certainly can’t.

    I hope the new Rheumie is compassionate and knowledgeable, a combination that’s hard to find. With your hips and shoulders, does it feel like joint pain or something else? I wonder with the spasms and such in your legs as to whether there’s any kind of deficiency that could be making it worse, like iron or magnesium?

    Take good care of yourself lovely. Keep us updated. Xxxx

    Liked by 1 person

    1. My GP ran some labs to see if it was a deficiency and found nothing. I’ve had them for a long time and thought they were fibro but they’ve gotten so much worse and so has my neuropathy. Now it’s hard to walk in the morning. So I hope they can figure something out. The meds I’m taking don’t do much. Thanks for the kind words. What’s up with you other than migraines? As for Covid, I don’t disinfect everything anymore. I use a wipe on my Starbucks cup before I drink but I stopped all of the other and no problems so far. I don’t go anywhere but the Starbucks drive-thru and the doctor. With your parents it’s probably good to keep up the routine for now. Write me.

      Liked by 1 person

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