Saturday, November 10, 2012

A Day in the Life of the RA (RUPUS) Patient

What another damn busy week! Monday of this week was the only "free" day I had from doctors, yet I assisted in going with my mother to her mammogram, so that still counted as seeing a doctor.

Tuesday morning I did my monthly blood for my one Rheumy. 5 horse tubes and a shot vein and Tuesday was also my Duke Rheum doctor. My numbers are through the roof despite the two back to back rounds of rituxan. Go figure! I went through all of that for pretty much nothing thus far. Another 5 horse tubes of blood and a nice bruised vein  She still wants me to to a 24 hour pee jug test to see if I pee protein, which is an indicator for amyloidosis (which she still suspects I may have). I start that magical test tomorrow. I will be home all day measuring my piss and keeping it on ice. What a happening life I have. Then I drop my jug off Monday morning for review.

My vein 4 days later. I look like a drug user with tracks.

Wednesday was the stress test from hell. A RA patient with two major knee surgeries, a bum hip, and an ankle that needs fusing on a treadmill? Yikes, I didn't know how that was going to work. They wired me up, pumped me up with radioactive dye and away I went on a fast incline. I have tachycardia my resting heartbeat averages around 110 to 120. It can go as high as 160 just sitting. I started off at 110 on the treadmill I asked what I needed to get to. They said 159, I then said yippieee mofos I won't be on this thing long. I got to 189 in 3 minutes. Then they took pics of my heart on this scan. Then they told me I had to come back the next morning. Right then and there I knew I flunked something.

I was flipping out because it does not take a lot for me to go to a dark place of woe and worry. I came back on Thursday and they shot me up again with radioactive dye and took resting pics. The doctor then saw me. The reason I had to come back is because the first set of pics showed one of my chambers as "hazy". She then said I had good looking scans but still an enlarged heart most likely due to my tachycardia which is due to my pain which is due to my RA. See the chain there? It all goes back to Rita. I have to stay on my heart meds and find away to control inflammation/pain. Yeah, good luck to me on that.

Later that same day I saw my foot doctor. I got my 3 piggy back shots and talked about subtalar infusion. He first wants me to try PT. Now, I have been a PT goer for years. I find it a colossal waste of time and money. He was shocked I said that. I meant it. He said I am the only patient that challenges his thoughts. I think that was code for, "stop being a pain in my ass". I will give stupid PT another whirl.

Then I had my primary care doctor appointment. She wants me to try acupuncture. She doesn't believe in it but she thinks it can't hurt, it might help. Um, that is what I thought about the chiro ahole a couple of months ago and guess what? It did hurt!

I will amuse Dr. Raman and do it. I contacted the woman. We'll see.

Now onto the best part. My dad wants me to go to Orlando (where I grew up) to get cryogenic therapy. Cryogenic therapy you ask? Watch the below youtube video. It is often used in Eastern Europe and was invented by a Japanese man in the 70's to cure RA and AS patients. The liquid nitrogen will freeze my synovial fluids and then I will somehow magically piss my RA away in the toilet. I'm doing this in January. He's hell bent on the fact that this is the cure I need. I will be a frozen popsicle for 5 days 2 treatments a day. Good times.

I have to stand in this thing for 3 minutes with clean socks. I;m not going in butt ass naked. I'm stating that now!

What a freaking week. At least I don't need heart surgery. There is the plus for this week.

Still have a right hand and a right ankle lined up on the surgery list. Maybe I can freeze my limbs right off?


  1. Hey there, haven't seen ya post. Checking to make sure your ok. Hope the holidays were tolerable. Hope your feeling either better or happier.

  2. Hi Robin,

    Thanks for checking in on me. I really appreciate it. I was away for Thanksgiving and returned with acute sinusitis and now a flare. I hope you are well.

    Take care,