Thursday, November 29, 2012

Pain Management Specialist

I'm sorry I have not posted in a good while. A concerned reader even checked in on me. That was sweet. It makes me think my ramblings on here aren't just for my ego.

Yesterday I saw a Pain Management Specialist in hopes of finding ways to calm down the chronic pain that comes with a chronic illness. We met for an hour and discussed everything I've been through and offered some things we can start together. He will take over dispensing the pain medication. I take demarol. I know that it is an antiquated pain med but it is the only thing I can truly tolerate and it helps. I will also start seeing an acupuncturist on December 11th. I am not a huge believer in Eastern medicine but I will try it in hopes that it helps me. I was also given a compounded pain gel to rub on joints that are painful up to 3 to 4 times a day. I just received that today. I have tried it on my hip and shoulder. We'll see how that goes. I will also be seeing a chronic pain psychologist. I think that may actually be of benefit to me. I have never truly accepted my diagnosis. I think this is worth a try.

Hope all is well!

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?

Wednesday, November 7, 2012

Chronic Illness to Chronic Complainer?

I purposefully went to bed at 9:30 and did not watch any political result coverage. I knew who was going to be elected. It killed me to know who was going to win, so why watch coverage of it? Tossed and turned all night, stayed off facebook to see the gloating, stayed away from my computer, the TV, stayed safely in my cocoon of comfort. I wake up at 4 something in the morning, made a GIANT mistake.....I looked at facebook. Yep, gloating all over the place. Gloating, gloating, gloating. It made me sick to my stomach that they were celebrating my lack of health care these next 4 years and beyond (let's face it no Republican will be in office for a long long time because underachievers want achievers to be at their low level). As I saw it, my friends were celebrating my slow and painful demise all in the name of marriage equality and Obamabucks. I want marriage equality too but I would choose health, in particular all of our health, our chronic illness we fight everyday. I'm sorely disappointed by my country, my friends, and my fiance. He thinks I overreact and that I am thinking worst case scenario. He never has a retort to the fact I read the 1000 plus page ACA. I know what and the rest of us are in for.

So saddened, disgusted, enraged, disappointed, disenchanted, and getting to become numb. I deactivated my facebook. I don't know if I will ever return. It won't be for a long time, I can tell you that now. I'm tired of being assaulted by lies and bullshit.

Now on to chronic illness to chronic complaining (above was not complaining, just venting. I want to make that distinction now).

I had an important doctor's appointment at Duke Rheumatology yesterday afternoon. The main point of the visit was to go over what I already knew. That I 99.9% had Juvenile Rheumatoid Arthritis as a kid (hello swollen knees and awful pain legs my whole childhood...along with popping joints and just overall never functioned as a limber kid) and that I am a sero negative RA patient because JRA does not show Rheumatoid Factor in adult versions. Rupus (RA and Lupus) was confirmed. Then that nasty subject of amyloidosis was brought up again. My Duke Rheumy strongly suspects I have a secondary form of it. So, I did a blood test and if that comes back positive along with me and my awesome 24 hour piss jug test, I have to see a neurologist and get a fat pad in my stomach biopsied. I have a nuclear stress test later today and she hopes that protein deposits would be shown on the scans, if so, she has her answer to amyloidosis sooner than the blood tests come back.

My mother goes with me to my appointments. I never ask her to come, she just comes, then when she goes and hears all of these various hardships I endure then she gets all mad and pissy. So I had to deal with a pissy mommy on the way home from the appointment and she obviously zoned out and did not retain anything the doctor had said. So there was the 1st person that zoned me out on my doctor's appointment.

Then my Dad called wanting to know how my appointment went. I was in the middle of saying what happened and what was said and he was rushing me off the phone and had to go. 2nd person that was not paying full attention TO A FREAKING QUESTION THEY ASKED!

Then the third and final straw? WW asks me how it went, I'm in the middle of explaining my day and the outcomes and I noticed I didn't have his full attention either. He was looking off and futzing with something on his computer. Then it dawned on me, no one no longer wants to hear about my damn health woes. I think I am literally boring people to death by my piss poor medical shit, or it is just too negative news for them to absorb, or I am now a chronic complainer? I'm at a loss for why 3 separate cherished loved ones just quite bluntly dissed me. Hey, guess what folks? Don't fucking ask me how my appointment went if you are not fully interested. I'll just absorb it like I usually do, ON MY OWN.

Do people want to hear, "my appointment was great!", "my appointment was the usual", or "it was fine" as a response? If that's the case, I can say those generic replies.

Then my aunt texted me asking me to keep her updated about the election. I told her I had a shitty day full of shitty info and that I was going to bed. She asked what was wrong, I tell her. She texts back oh ok feel better love u! Umm feel better? What does feeling better feel like? I'm not going to get better that was the damn point of the appointment. I'm just dumbfounded by my 4 loved ones acting the way they did.

After my stress test (if I don't croak from a heart attack) I'm not saying a damn blessed word to anyone about the results. If they remember to ask I will give one of the above generic responses. I guess that is what I have to start doing. It's either no one cares or they just don't want to absorb your health hardships, if that's the case then that equals not caring too.

After having 10 horse tubes of blood being drawn yesterday and all of this swirling shittiness that surrounds me....I can already gather today is going to blow.

I'm so fed up lately. I just want to pack a bag like I used to do, go to the airport with passport in hand and find an available flight, pick it and drop off the earth for a bit. I am seriously starting to contemplate taking a solo spiritual journey soon (if my health allows because we know what prisoners we are because of our diseases). I'm getting too caught up in too many things (wedding planning being one major thing) and whose to know if I will even be around much longer?