Internal Medicine and Genetic Reports

These photos may upload badly, but let's see.

The genomics lab sent me reports on certain conditions in which I am considered high risk. I printed them out and gave them to Dr. B yesterday, along with my raw data for Periodic Paralysis (previous blog post). He accepted it all with interest, recognized the validity of the gene.iobio database, and promised to upload the reports to my chart. We also discussed a high impact variant I am showing in gene COL6A3, which is Collagen IV Alpha III Myopathy. He agreed to ask his staff to try to find a Rheumatologist who accepts Medicaid. I won't hold my breath, but I appreciate the effort. COL6A3 is a disorder where the collagen which surrounds muscle cells is broken. This would explain some of my symptoms if I can get a clinical consult to address it. Considering many people in my support groups have both Periodic Paralysis and a collagen disorder (in many cases, it is diagnosed as Ehlers-Danlos), my chances of having both are pretty high, in my opinion.

I want to make clear the reports below are not a diagnosis. They show mutations in my DNA that support a higher than average probability of having or developing the condition.

Next year, I will likely have another Echocardiogram and my first Mammogram, if insurance OKs it.

I also expressed to Dr. B how much pain I'm in all the time. He prescribed a pain medication for temporary use, and Medicaid denied it. It's unfair that someone as ill as I am, with no history of addiction, is being refused a temporary script for pain. Insurance companies insist on demonizing opioids, and I understand to some extent why they are cautious, but patients with serious and painful chronic conditions are being discriminated against to the point that they are dying by suicide. I don't plan to be one of them, but I'm also not making any promises. I shouldn't be debilitated, sometimes vomiting from the pain, and refused treatment because some rando who doesn't know me is paranoid that I'll become a law-breaking addict. It's outrageous. This country is unbelievably cruel.

That is all I have to say for now. I will return soon.

Woes and Plans

While I have the laptop on me, I'm going to ramble about what's coming up this week.

I see Internal Medicine on Wednesday. I have quite a bit of data printed out from my genome testing to take to him. We'll see what he says about it. Mostly, I need refills of my HKPP meds, and some kind of relief for the muscle pain that's trying to take me out. I want to invite someone to shoot me. It's not tolerable.

My teeth have been a problem this year in addition to my muscles and kidneys. I went to the health department dentist (because I'm extremely poor and also yes the health department has a dentist) where I went through a couple of months of antibiotics and ibuprofen, and eventually the pulling of a tooth which was not the tooth originally planned. Instead of my back right molar, he pulled one closer to the front, in smile range. This has been very difficult to accept, but I'm trying. The pulling took an hour and a half, and I nearly passed out twice. It was traumatic. I didn't ever want to go through it again.

But now, here I am with a fever and my entire right jaw killing me. Just shoot me already. I will never understand why my life is one damn crisis after another, but I'm really fed up. It's World Mental Health Day, and I don't feel like talking about it. My awareness, if I even bother, will have to come later.

Tomorrow, I'll call the dentist for an appointment. Where the money is going to come from, who knows. But I'm going to call and make a stupid appointment, and I'm going to go to Internal Medicine a couple of days after that, and it will either all go well or all go to hell. God only knows.

I'm tired of this.

So the great social media outage happened the other day. I didn't care as much as others did about it, and I decided to shut down a few pages. Someone keeps trying to hack my Instagram, so it's going bye-bye. I have no use for it, and the only reason I stayed as long as I did was to follow certain people. I've decided I'll live without them, and maybe we can reconnect at a later date.

I deactivated my private FB account, probably for good. Most of the people there care very little for me, some to the point of devaluation and disrespect. It's way past time to leave them with their toxicity and stop caring. A few people from that account will be followed elsewhere, quietly.

I am slowly deleting photo albums from my main Facebook account. I read news articles about the possibility of our data and content (billions of us) being sold on the dark web. I won't bother sharing any of that here, but you can see it on my FB or Google it yourself. At any rate, I know I'm not important in the least, but I made sure to secure my PayPal and remove it from Facebook, and now I'm removing selfies and groups. I am still talking to friends on my timeline through statuses, but that's probably the extent of my Facebooking from here on out. My genome testing stuff will not be uploaded to Facebook as planned. I will find another place (probably here) for all of that.

I will set up a tiny, legal shop soon for my art. I'm highly restricted by the amount I am allowed to sell, but I am being cautious and making sure I don't break any rules. I get that I'm owned by the gubment (misspelling intended) and I am a lawful hussy, to the point of vigilance. More info soon.

I wish COVID would GTFOOH (abbreviated for your comfort...if you know, you know). It is exhausting. People are still dying. I want this to end. My antibodies are still going strong, as per my blood bank who tests it when I donate, but I will seek a third vax at the end of the year. I'm still wearing a mask also, and not hanging out with people. As if I would in my condition.

I'm in too much pain to do anything anymore.