Friday, June 29, 2012

A Rheumatoid Arthritis Suit

My mom usually feels helpless when it comes to Rita. She gets frustrated that she can't help and that I have my own battle to fight. A battle that is a day to day and varies greatly. One way she feels like she i s helping is by finding articles on the internet. I usually read them and scoff because they do not fully describe what we go through.

However, today that has changed. I did not scoff at this article she e-mailed me. I actually was ecstatic at the prospect of this doctor's work and personal struggles with Rheumatoid Arthritis. His name is Dr. Hamburger (yes, I envisioned the Hamburgalar stealing away our RA) and he practices Rheumatology on Long Island in New York. His father was inflicted with RA and that his father's struggles is what helped shape him as a doctor. In the article was a video and the video showed a RA suit. A suit that restricts joint movement and simulates our stiffness. Granted the suit did not simulate pain or swelling, it was a step in the right direction for people not afflicted with RA to get a small general view of our struggles. Hey, it's better than nothing if you ask me. It is a step in the "walk a mile in our shoes" direction.

Check out the link please and also watch the video. It shows a glimpse into my world and the world of all RA patients.

The link is here.

For those of you suffering the oppressive heat today, best of luck. It is supposed to get up to 106 in Raleigh with a heat index of 110. It is safe to say that I will be resting in my bat cave with ice packs and heating pad.

Monday, June 25, 2012

Jesus Don't Want Me for a Sunbeam

My formative youth took place starting around 1992. I was the quintessential grunge girl. I wore all black, painted my nails with Chanel's uber awesome color, Vixen. I dyed my hair every possible coordination from Run Lola Run (awesome German movie) red to hot pink. My personal favorite combo? Jet black hair with hot pink bangs. It was totally killer. I was hurting then but had no clue why. Doctors would tell me it was growing pains. I saw many doctors and was tested for lupus and Lyme's disease often, never came up with answers.

Today, I was looking through my thousands of CD's that I hoarded in the 90's. I have to say, I really had kick ass taste in music. As a 33 year old, I am proud of my 14 year old self. Grunge girl who wore all types of docs with her kooky ensembles. However, looking back on my youth...I was in pain back then too. I just never seem to dwell on it.

I was thinking about all of this today because Rita has kicked my ass lately and I was dwelling today. I am close to three weeks past my infusion, my hand is killing me, and I had to go to the stupid blood lab today for my 6 week blood suck. I am so covered in bruises. The phlebotomist began to ask me if I felt safe at home. I looked at her not getting the connection until it dawned on bruises are that bad.

I went to that non-helpful dark place and asked the tricky question, "Why me God?" Was it all those dark angst filled days as a youth? Was it because I never really fully believed in you and questioned your motives often? Was it because I always had to buck the system and never follow the sheep? When I start with these questions, I know it will not end well. I had to mentally tell myself (more like yell) to stop and then I just tried to breathe and relax. I was kind of proud of myself for stopping. I have not accomplished that yet. I dwell on the health other have and wonder why I wasn't one of the lucky ones.

I know it does no good. I know.

So, tomorrow I luckily have an infusion. My stitches also get removed. Tomorrow will be another painful day but at least I know.I do not like the days where it comes out of nowhere. I kind of want warning.

On tomorrow's infusion play list?


Okay....fine. I liked HOLE a lot and I'm not apologizing!

Veruca Salt....oh how I adore angry chick rock.

I really could go on. I will stop and play a bit from Run Lola Run.

Tuesday, June 19, 2012

She's Crafty

So I am alive. I made it through my surgery. I of course had to be the high risk/difficult patient because of my whacky immune system. That means no numbing meds or nerve blocks. I had to have anesthesia. Prepping was difficult. The nurse was unable to find a vein after I specifically pointed one out to her that is used often and tried and true. She stuck me twice in other areas with no luck. After 2 times I will not let someone stick me again. So she called the IV specialists. They have a machine that detects veins. The lady came in and was about to numb my arm, I yelled hold up and that I was allergic to the "caines". I pointed out the vein I know is good and she found it right away. I'm suffering with a lot of bruising from all of those vein fiascos. I went off to the OR woke up in the PACU. Saw my mom, dad, and fiance. I was hurting to say the least and was impressed at the packing stylings. My wrist packing made it seem like my wrist had a goiter. Look and see.

I lived with my wrist like that from Thursday until today. No showers whatsoever. I was living on baby powder, baby wipes, facial wipes, and deodorant. Hair had to be washed in the sink. Many a naps were taken as I had to have my arm above my heart to help with swelling. That is not easy at night when all you want to do is sleep on your stomach. I managed for the most part. My fiance took excellent care of me and I was grateful for his help and patience. I type this now as I am a wee bit shocked and mad at him for a fight we had just 15 minutes ago. Ugh. I'm trying so hard to beat the odds of not being the anti-relationship girl that I know I am deep down inside.

Today was the great reveal day! I was allowed to take off all of the packing and take a shower. My hands are not up to snuff yet and it hurt like a mofo. It is pretty gnarly looking. Way more bruising than I expected. It bruised even more through the day today. I tried icing it some because ice is my post-surgical crack, people like to fly high from heavy duty narcotics, I just want ice packs or my favorite ice machine to numb the screaming pain.

Here is a picture of today's reveal

The stitches don't come out until next Tuesday. The nurse said once they are out it should be feeling a bit better. I have become very crafty using my left hand and arm. I amazed myself on crafty ways to do things from feeding to bathroom rituals, to opening pill bottles. I guess the human brain is really able to be resilient and compensatory by nature. Don't get me wrong. It has been hard as hell to be a left hand girl in a right hand world. Here's to less pain, swelling, and bruising each day.

Funny side note: I am a freak. My hand surgeon told my loved ones I had extra long muscles and tendons and he has only seen it a few times. It's supposedly rare. I have a lot of physicians note nutty anatomical anomalies. I'm a weird girl through and through.

Monday, June 11, 2012

Going Under the Knife

Thursday is the big surgery day! I am a tad bit nervous but I should make it. ;)

I had my pre-op and did not realize what type of healing time was involved. I may not be able to take my course in July. I am a bit bummed with that. I don't want to mess with proper healing time and have bigger problems later down the road.

I just wanted to let my few readers know that I will not be updating this blog for a bit.

My fiance is coming to see me at my ugliest and neediest. This should make for some interesting times. He's a gem to come down and assist me. I guess both of us need to get used to it because marriage is about the sickness as well as the health. We may never have that health part down though ahaha. When I get married, I am shouting "IN SICKNESS AND IN HEALTH" because we both started out sick and will remain with disease. We'll have that part down cold.

I wish all of you a happy and healthy remaining June.

Thursday, June 7, 2012

Let's Talk About Nodules Baby

Such a fascinating topic for a blog, isn't it? I think it is something that needs to be discussed because I am personally tired of mine, hiding mine, and describing what they are.

As I posted earlier, I used to have a sick addition to shoes. Oh how I loved to shoe shop. Shoe shopping has become a drag now with not only Rita hanging around and shitting on my parade, but the fact that I have a pretty decent size RA nodule in the worse place possible is what is dragging me down. See, my RA nodules do not hurt when you touch them. I forget that they are on my body, growing off my body, or making a ghastly appearance to others' eyeballs. What does irritate me is the fact that heels of shoes now irritate my nodule. I named her Nanette by the way. Nanette is getting bigger and more obtrusive. My pedicure place always marvels at Nanette and one was as silly to use the scrubbing pad and tried scrubbing it away like it was a callus. Surprise! It's not dead skin, it's a mind of it's on my heel. Dr. Dork (my beloved foot man) marvels at Nanette as well. He has taken so many x-rays of it because it is visible in my x-ray and has sent my films to his medical college, Emory. Perhaps Nanette is on the interwebs and has friends on facebook? Stranger things could happen. Let me note that I have had a few painful cortisone shots right into Nanette in hopes of shrinking her down, no luck because Rita is a stubborn bitch. Dr. Dork said it is futile to have those injections anymore. All there is left is surgical removal but there is no guarantee that it won't come back. Why bother?

As I was sitting in my pre-op appointment yesterday for my wrist/hand surgery, I looked down at Nanette and personally asked her if she grew over night. Then it dawned on me. I think Nanette is having a nodule flare of her own. The back of my soft shoe was killing Nanette and making her angry and fussy. Then Nanette made me fussy at Rita. It was a vicious cycle of fussiness as I waited to be called back to discuss my operation.

Here is a picture of Nanette.

Ah to hell with it, I'm putting it all out here now. The good, the bad, and the ugly of RA. I don't care anymore. People need to see these images of RA along with reading the words and feelings that come with the roller coaster of RA. You do you and I will do me. Wait, that sounded raunchier than what was intended. I have seen nodules on fingers (hello right thumb of mine), nodules on elbows, and nodules on knees. I have not come across many like that of Nanette.

I feel like being Stevie Nicks tomorrow and tell my RA to stand back!

Sometimes we all must channel our inner Stevie Nicks as a form of survival of stress.

Tuesday, June 5, 2012

Master of the Healthcare System

The above title is nothing to be proud of, really it isn't. It just is an example to show how a person with chronic illness masters the rope of a complicated system.

Yesterday I called my insurance company to double check what my deductible is for my upcoming surgery next week. I hit all of my corresponding codes to get to an actual human being. Even that is a feat in itself. Can I get an amen?

I for once got a nice insurance representative. What a pleasant surprise. So I started with my procedure code. Tracy (my rep) was shocked. She looked up my code and said that my surgery was labeled "medically necessary". She told me what my deductible was and how I owe a certain percentage before I reach another maximum. We got all of the business out of the way and Tracy asked me if she could ask me two questions. I said sure. The first question was "how do you know procedure codes and ask all of the right questions?" the other question was "how did you get your surgery to be labeled as medically necessary?" I laughed. Chronic illness really was the answer to both questions. Sad, simple, but true.

I told her when you are in the system like that of the healthcare system, people like myself with chronic illness pick up on the healthcare code and lingo. I knew it so much that I am currently half way through my Master's in Healthcare Administration. The response to my second question was the fact that I am chronically ill....of course what would be an "elective" surgery for the normal healthy person but with a person with Autoimmune Rheumatoid Disease a simple elective surgery has to be necessary because of nerve damage. She was amazed I knew the system so well. That really should not be a compliment, just a fact that chronically ill people can't just be sick all of the time, they also have to be intelligent about their disease.

I was going to get my X-ray of my hips today but between walking weird from pain in my hip and knee...I did something to my lower back. I never have lower back problems. Wow, something that I don't have a problem with? Ugh, I hope this awful breathtaking pain and spasm dissolves soon. I just don't want the X-Ray techs manipulating my hips and aggravating my back more. I guess I will hold out and hope for the best tomorrow.

Friday, June 1, 2012

What Does RA Look Like On the Outside?

Rita really has got a tight grip on my joints now. This wild woman is out of freaking control. So much so my doctor suggested I go to the Mayo Clinic. Ummm, that doesn't sound good. I saw my doctor yesterday. I trust this one, I will venture to say I like her as a human being. Those are rather high marks coming from a skeptical patient like me. I live near Duke, why she shot over Duke and went for the Mayo Clinic was a little puzzling. I told her that instead of racking up big bucks on the Mayo Clinic, I'd go to Duke Rheumatology. She said she would refer me. Guess when I can get in to see the big brains at really, take a guess. It's truly laughable. They can see me in November at one office or January at the other. The scheduler for my doctor called me and was amazed. I was amazed some but figured out why the length in wait. Old patients 75 year plus who hurt and are stiff are recommending themselves right and left into Rheumatologist offices and they flood the system and make it very difficult for younger patients to get in. It's a fact, I'm not being cold. My rheumatologist and my other doctor admitted to it. So, my doctor suggested I call everyday hoping for a cancellation. It sounds great in theory but come on folks, calling them daily turns into a full time job in itself. 

Maybe I do have a better chance of getting into the Mayo Clinic earlier? I was sitting here laughing thinking I should just go to the Duke Hospital Emergency room and not leave until I see a rheumatologist. Do you think that would work? I once saw on Mystery Diagnosis that a girl was so fed up she drove herself straight to the emergency room at Harvard and wouldn't leave until they found out what was wrong with her. It turns out she had some major major life threatening problems.

I was sent for yet another hip X-Ray. My doctor will not let up about avascular necrosis. I am unable to get the MRI because of the screws in my leg. Ugh. So now what? 

Rita pulled a pretty spiffy trick on my ankle today. She made my ankle into a double hump camel. RA is like shadow puppets. My joints turn into all of these weird looking creatures. It was impressive today. I used a new app I have and made a photo montage of what my RA has looked like lately. Rita is alive and kicking that's for sure. Hopefully I do not go back to the darker place I was a few days ago. I got my antidepressants increased. Hopefully tomorrow that will start to help with the pain management as well because as of today, I only have 13 days left until my first of 2 surgeries. I just want to rest and relax with minimal pain and worry before going in.

Here is my ode to visible RA. I think this meets the specification of looking sick.

I sure do wish for better looking knees and ankles but that might not happen.