2019 Thus Far

I have a few friends wanting to know how I’m doing so this is for you. This is the easiest way for me to tell this story in one blow, and also to chronicle it for me. No pretty pictures, just the straight skinny.

We are slightly beyond the half year marker for 2019 and okay, here it is, so far, this year has sucked. That said, here is why-

January, but really, starting in December I began having mild headaches that bloomed just a little more in January along with a cold that went to my lungs. Infection & antibiotic- round 1. February brought a little more headache and some jaw pain. Now, it’s important to note here that I’d been in a gluten slide since the holidays and it often presents with jaw pain (RA in the jaw, actually multiple sites), and this is what I thought was the problem. By the third week of February, I suddenly realized it was not gluten but a toothache! By the time I realized it I was in full-on pain and in need of an emergency dentist visit! I had a tooth that had cracked all the way down and there was an infection. Antibiotic- round 2.

March brought 2 back to back urinary tract infections (apparently caused by my cancer med- Exemestane). Antibiotics- rounds 3 & 4. End of March was my scheduled biologic for my RA- Rituxan. Just a few days later another tooth infection. Antibiotic- round 5. Spoke with my RA guy and we canceled the next Rituxan infusion until my tooth was taken care of… but I had to wait 2 months because of, well, no immune system. And yes, another tooth infection with a really great abscess. Antibiotic- round 6.

I finally made it to the oral surgeon. Let me explain why this happened. I have RA, Osteo, and Inflammatory arthritis in my joints. But my bones, my bones are freakishly strong. It’s my superpower. They are stronger than normal, the other end of the spectrum in spite of all the meds that compromise them, in spite of having done chemo and radiation. “Freakishly strong”- that’s a quote from the doc! But, I digress… what this means to my dentist is that she didn’t want to touch me. You know, medical history, no immune system, and a mouth where all my teeth are tightly cemented to my strong jaw bones. We were talking about wisdom teeth too, and another cracked tooth (thank you chemo), do it all and be “under.” She said I didn’t want to do this awake! Wow. Okay.

I finally get to see the oral surgeon and discuss a plan of action, the tooth has to come out now, even with the abscess (still), which is not normal practice, but it’s never going to get better until it’s out. And we did all this the very next day. Antibiotic- round 7, plus an antibiotic mouth rinse. The two broken teeth had to be cut out with stitches running down nearly under my tongue.

What ensued post surgery is almost indescribable. It’s mid-June. I had my surgery instructions in front of me to read nearly every hour for the next few days because I couldn’t remember what to do- seriously from hour to hour. I had Opiates that I didn’t take other than the first day because they made me vomit, I popped stitches the first day. Ibuprofen did the job well enough anyway.

Autoimmune system diseases have this interesting way of taking a back seat when other bigger things are happening in your body, and mine did. After a week or so though, things are coming back, aches, pains and getting stronger with each day. Head to toes, every joint in my body was freaking out! I could barely move. In fact, the 3 days before my RA appointment on July 1st I was not functioning. It was too painful to move. I did nothing. I couldn’t remember anything, much worse than anything I’ve experienced. I was utterly traumatized.

I walked in with my cane for my RA appointment and slumped into a chair completely exhausted from pain- joint and muscular. I explain what’s been going on and I can’t think. I haven’t been able to think for a couple of weeks. I can’t stand on my legs very long. New swellings in my ankles… I’m crying I’m so miserable. He does joint checks, I’m in an RA flare-up, my entire body!!! Then he does a Fibromyalgia check and for the rest of the appointment, I’m in pain at every poked spot. He’s a thoughtful kind of guy and I’m a good reporter, so we made a plan of action. I don’t remember all of that discussion but I went home with a plan and new script for Prednisone which is used for flare-ups, and he talked about my Fibromyalgia Fog which I’ve never experienced before. The Fibro I’ve had since childhood (before it had a name). He put me on Duloxetine which is an antidepressant (I’m not depressed) but is also used for chronic pain, neuropathy, and helps with Fibromyalgia brain fog. It’s a Serotonin/Norepinephrine drug. I’m game.

The first 3-days on the Duloxetine I was amped, but I’m also on 15 mg of Prednisone too, I had more energy then I’ve had in a year… or two. My muscle pain is quieting down. And my brain is starting to clear. I think you can imagine how amazed I am.

Better living through chemistry, huh?

I have my Rituxan infusion tomorrow and then the follow-up on the 26th. I’m feeling hopeful again. I have so many conflicted emotions about medication, but I would be dead without some of them and wanting to die without the others. The body does not always heal itself. It needs help sometimes.

I’m good with that.

Love ya!

Rrrr….

 

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