Monday, July 27, 2009

Could It Be What It Was Originally?


% Occurrence

Achy joints (arthralgia)


Frequent fevers of more than 100 degrees F.


Arthritis (swollen joints)


Prolonged or extreme fatigue


Skin rashes




Kidney involvement


Pain in the chest on deep breathing (pleurisy)


Butterfly-shaped rash across the cheek and nose


Sun or light sensitivity (photosensitivity)


Hair loss


Abnormal blood clotting problems


Reynaud's phenomenon (fingers turning white and/or blue in the cold)




Mouth or nose ulcers


Arthralgia? Check. Kidney involvement? Check. Photosensitivity? Check. Reynauds? Check. +ANA? Check.

Oh. My. God.

I need to get to my rheumatologist as soon as possible.

I think I have lupus.

Wednesday, June 17, 2009

Trying to get back to work.

It would appear I'm not very good at posting. I think about it every day, but find other things to do. Like clean up puppy mess, which seems to be every day. Almost makes me want to get rid of him sometimes. ANYWAYS.
The rheumatologist visit went okay. She is a cold witch though. I told her I had lost 20lbs and instead of saying 'good job' or anything, she just said 'wow, losing that pretty slowly aren't you.' Thanks so much doc. So supportive. She wanted me to not go back to work for a bit, see if the Humira made me feel less tired in a month or so. I told her I had to go back to work ASAP because of money issues. She said fine. So here I am, like 3 weeks later, and still off work. Why? Because the insurance company and any government agency works slow as shit. Whatever I guess. I'm not in pain most of the time now, and I'm getting paid to sleep and play World of Warcraft. That's the only way I can look at it right now without getting so mad I want to pull out my hair and go and bash someone's face in.
I've made almost 0 progress in regards to the 'being sued' by my insurance company for overpayment. All that's been done is my union has sent them a letter outlining legal obligations etc etc. I've heard nothing. Also, I've heard nothing from my return to work co-ordinator. I did however get a letter from I-have-no-idea-I've-never-seen-her-name-before-but-must-somehow-be-a-return-to-work-co-ord, stating my return to work plan with limitations.
Basically, it says " to return to work with the following gradual RTW plan - no lifting/carrying >5lbs, sitting for 1hr, walking for 15minutes, prolonged standing up to 15 minutes, unable to kneel. No work in emergency, no night shifts, no wards, must not climb stairs or kneel. Gradual RTW plan: week 1: work 4 hrs reg rotation, week 2: work 4 hrs reg rotation, week 3: work 6hrs, week 4: work 6hrs, week 5 return to full hours and duties".

Think this is a copy of the letter they sent my manager at Children's. It might sounds like OMG I can't do anything, but working in the ICU as an RT would be fine, specifically as a helper position. I can't do rounds, especially for the first month since I won't be there for hand off. But also because I cannot sit for that fucking long. My spine aches my feet swell I can't pay attention. Horrible. I'd rather be just running around working the whole time.

I'm going to write our equipment supervisor an e-mail asking if I can borrow her for a couple hours when I come back to review stuff like the INovent and oscillator. Let's hope I didn't forget everything like I think I have. It'd be nice to have a schedule again instead of floating aimlessly waiting for things to happen other than grocery shopping. I'm also excited to get back and see my friends, although I'm disappointed in a lot of them since they appear to have dropped off the face of the earth as soon as I went off on disability. Although I was working at 2 hospitals and missed seeing a lot of them for a year, so I guess me being gone was very gradual. Easily forgotten I guess. Fantastic!

Saturday, May 30, 2009

An interesting start.

Here's the quick and dirty - My name is Liz. I am 24 and have Rheumatoid Arthritis. I work in a children's hospital as a Respiratory Therapist. I'm doing this blog to get my opinion out, and in doing so, maybe not feel so alone about this whole RA business. How about I tell you how I came about this whole RA thing first. Starting at the beginning is usually a good place to start. On my 22nd birthday (October), 2 years ago, I did the usual 22 year old birthday thing: got drunk with a bunch of friends, fell asleep in a rock garden outside. I woke up the next morning stiff and sore, obviously from the rock garden I assumed. The stiffness never went away and neither did the pain, it just increased. I thought nothing of it. It got to the point where I would wake up in the morning at sit on the edge of my bed, looking at my feet that were swollen to the point of looking like fleshy red footballs, wondering how I was going to stand. I would then use my hands to prop myself up and literally drag my body to the bathroom to get ready for the day. People at work noticed this change before I did. My boss even told me to take some days off and get better, but I wasn't the type of person to take time off so I didn't. It wasn't until late November I decided that the pain and inability to walk, stand, hold something like a toothbrush, or dress myself was abnormal. Being in the medical field and a fan of google, I decided to figure out what it was. Entering all my symptoms into the search engine brought me 3 options: RA, fibromyalgia, and lupus. I took my newly found self-diagnosis and went to my GP. She scheduled me for the regime of blood tests and called me back in when the results were ready. I was 100% ready for the answer of "It's rheumatoid arthritis. Let's get you on a treatment plan." I wasn't ready for what the doc actually said, "You're results are all normal, we'll get you to see a rheumatologist in 6 - 12 months. Have some naproxen and T3s in the meantime." I was crushed. I went back to work in the ICU and had a nice break down in the ventilator storage room. I look back and realize I've cried a lot a work because of this fucking disease (sorry for the F-bomb, but it's needed.) So I was placed on the waiting list. The naproxen was a joke and didn't do a single thing. The pain got worse and was now in every joint. My lowest point was sitting in the BloodGasLab, receiving report, and trying to breathe and realizing that the arthritis had now planted itself in my ribs. It was sometime in February when I had to be admitted to Emergency while at work (at a Children's hospital mind you.) It was embarassing. My knee gave out when I stood up in the cafeteria coming back from break, and my boss Brenda was having no more of my excuses, and took me to ER herself. My friend Erin was my nurse while I was there. I had to go get X-rays on my knees and they had to offer me a wheelchair. Another embarassment. I had a resident come in and do the initial exam. I'm overweight, let's get that out there right away. The resident did the physical exam, wrote in the chart and left. I read the chart, and my heart sank when I read stuff like "unable to discern inflammation from excess adipose on knees". Why didn't she ask me? I could have told her "YES I USED TO HAVE KNEES BEFORE THIS GODDAMNED INFLAMMATION TOOK OVER 5 MONTHS AGO THANK YOU FOR ASKING." The real doc finally came in. I loved him. His name is Mihalchuk? I think that's how you spell it. He took a verbal history from me, of symptoms and pain and onset etc. From everything I told him, he said to me "it's most likely lupus. I'll pull some strings and get you into a rheumatologist tomorrow." He left, Erin came in, and I lost it. Thank god Erin is a wonderful, caring, warm and fantastic person. She was great, she just let me cry. I'll never forget her for that. The next day I was in to see a rheumatologist, Dr Jibb. She's nice enough. I was so relieved to see her, I wanted to talk to her about my pain and have someone relate to it. I wasn't so lucky. She was and is quite cold when it comes to talking about pain. T4's are how she comforts me. She got me on some celebrex and hydroxychloroquine. Over the next few months, I improved slightly, but not enough. Next step - methotrexate pills. Still not good enough. Increased to 8 methotrexate pills. Not good enough. Switched to methotrexate subQ injections. Improved. Still a long way to go. On a Sunday in August 2008, I got a weird lower back pain. I attributed it to too much sun. The next day, the pain had increased and I had a fever of 104, no appetite, and couldn't bring myself to drink. By Thursday, I was a complete disaster. Chris had been pleading with me to go to the hospital for days, and I finally caved and we went. I had a heart dysrhythmia, my BP was through the roof, my pulse was irregular, temp was 104, and my pee looked like root beer from the dehydration. I got an IV and 8L of fluid over the next 24 hours. They were scared I was in kidney failure, and told me to stay off the methotrexate. Next rheumatologist appt, I told my doc this, and reinforced how much pain I was constantly in. Her response was a Rx for 100 T3's. Add in an abscessed tooth + root canal, and a diagnosis of Trigeminal Neuralgia (the most intense, mind numbing pain I have experienced in my entire life.), the stress of buying my first house coupled with the decreased income from increasing sick days without sick hours, I went downhill fast during the end of the summer and the fall. I started having trouble at work (my other RT job was at an adult hospital). My boss there, Ann-marie, happens to be the most adorable woman on earth. She is hilarious, sweet, caring, and extremely genuine and interesting. Instead of assuming I was just bad at my job, she saw around it, saw what I couldn't, and knew I was at my breaking point. She took me into her office and asked me how I was feeling. I said "I feel like im wearing out my welcome." She leaned forward and asked how I meant. I told her I felt like I was taking too many sick days, making too many mistakes, making people do too much work around me because I was in so much pain all the time. Que the massive amount of tears on my part. I think I was in there for almost an hour. She is a fantastic person. I can't stress that enough. She told me the decision was made for me to effectively be put off work to be evaluated as to whether I should be on disability or not. I broke down again. I asked if it was mandatory. I felt like a failure. I felt like I didn't hide the RA well enough, that it had won. Despite my best efforts, despite putting up with unending pain and physical limits for almost 2 years, it won and I was not this strong person I fronted to be. And then relief set in. I didn't have to lie about feeling fine. I all of a sudden didn't have to be strong. I was put on disability. And then leflunomide (which may as well have been pixie dust - it did nothing.) for months. In the beinning of April 2009 I was put on Humira. I noticed an improvement within a week or two. Slowly but surely, I am getting better. That brings me to right now. I just went to my rheumatologist on Tuesday. She didn't want me to go back to work because I'm still having flares. I told her I have no choice and have to go back to work because of the state of my finances. She signed the papers. So now. I'm sitting here with buring aching in my shoulders, and shooting pain down my bad left wrist thinking "Oh Shit." I'll have modified hours at first. I hope that's enough. God I hope that's enough. Well - it's late and this is more like a novel than a blog. I promise, I don't have quite as much to say after this.
Song - Shinedown - Call Me