Lindsay“So this is the new year
and I don’t feel any different.” – Death Cab for Cutie
I know I’m a couple of weeks late, but happy 2023! I’m excited for the new year and am hoping it will be what I think a lot of us hoped 2022 would be…back to normal. I’m looking forward to some major changes, positive changes, this year. It’s going to be a good one, friends. I have a feeling. Although, I have been saying that annually for years. But this year I really really mean it. 
The ultrasound of my lymph nodes showed that my nodes are indeed enlarged, but with normal lymph tissue, not cancer. That was expected, but I will never complain about hearing “It’s not cancer,” no matter how many times I hear it. The fatigue, sore throat, and pain continue to wax and wane, depending on the day. I repeated by Epstein Barr labs and my numbers are almost exactly the same as in June 2022, which either means that I’m still reactivated, or my numbers are always high, even if not reactivated. It’s hard to tell if those numbers explain my fatigue and aches, or if it’s all just coincidence.
My rheumatologist appointment was uneventful. She asked a lot of great questions, although she nearly always interrupted me when I answered them (why bother asking me anything if you’re not going to listen to the answers??!) She said I have some fibromyalgia-like symptoms (mostly fatigue, muscle, and tender point pain), but likely don’t have fibro. I don’t disagree with that. My ANA is normal, we ran a Sjogrens panel (yes, I know about the lip biopsy)…there just aren’t really any signs of something autoimmune. And, like cancer, I can’t hear “It’s not autoimmune” enough.
The fatigue still isn’t awful – I need more caffeine than I should. I have to stop and rest during a workout, but am able to do some exercise. I’m not willing to give that up yet, as it’s still keeping me off of medication and that will change very quickly when I stop. And because I’m still without a POTS doctor to prescribe anything, I’m doing what I can to not need meds for as long as possible. I’m at the point where I might stop looking for answers for the fatigue and just give it some time. The lymph nodes have reduced in size over the past week. Maybe everything else will follow shortly. Maybe I just need to focus on taking care of myself and pampering myself and letting go of all of the shit and everything else will just fall into place. Maybe I’m just one lavender bath bomb away from bottomless energy. That should be the theme for 2023 – selfcare. Write that down. 
If you’ve read this blog long enough, you know that my elderly father-in-law (FIL) lives with us. He had been having some unexpected weight loss and abdominal pain for months and was recently diagnosed with Helicobacter pylori, or H.pylori. H.pylori is a bacteria found in the stomach that can damage the tissue in your stomach and the first part of your small intestine. My FIL’s doctor suspects he got it from not washing his hands after using the bathroom (I know, gross). A person can transmit H.pylori to others via saliva, vomit, or stool. In the past year my FIL has developed a pretty serious drooling issue that occasionally leaves drool on the floor throughout my house. He also does not use soap when he washes his dishes before putting them back in the cupboard, so there are a number of possible methods of transmission. He’s a sweet man, but caring for old people is tough, y’all.
In the past two months I have been experiencing some minor unexplained weight loss. I’m down about 4 lbs, but I have been busy lately and probably eating less as a result, so there could be explanations besides H.pylori. My doctor said that if the weight loss continues we’ll need to test for H.pylori, so I’ll give it about a month and see. I had cake for dinner last night, so I think I’m off to a good start.
So, that’s it. Welcome to 2023. I have been working on my resolutions list. More on that next time. At the top of my list? Find a new POTS doctor. And after 5 months, I finally have a pretty good lead.
“It might be that to surrender to happiness was to accept defeat, but it was a defeat better than many victories.”
—W. Somerset Maugham
Smell ya later.
– Linds
Cheers to 2023!!! Love your positive outlook despite the curve balls coming at ya! Have you ever had a sleep study? I have trouble with fatigue and a doctor suggested it. I thought no I don’t have sleep apnea, but I did it anyway. Diagnosed with periodic limb movement disorder. My body is jerking me around all night so even though I’m actually asleep, my body isn’t getting restful sleep, hence the fatigue. It’s so hard to always be chasing something. Good luck with the POTS doctor. It’s so hard to find good help.
I had a sleep study done maybe about 12 years ago. It was normal, although I know a lot can change in 12 years! Might be something worth looking into, thanks for mentioning it!