Life with Rheumatoid Arthritis

{Rheu·ma·toid Ar·thri·tis} A chronic and progressive disease in which the immune system attacks the joints. It is characterised by pain, inflammation and swelling of the joints, stiffness, weakness, loss of mobility and deformity. Tissues throughout the body can be affected, including the skin, blood vessels, heart, lungs, and muscles.

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My story...

My name is Carrie, and I am a nurse who was diagnosed with Rheumatoid arthritis in February of 2011.......on my 30th birthday. Now, most of my gifts were pretty sweet, but unfortunately, I received one that I did not want, and no one would let me return it.........rheumatoid arthritis. Today I am leaving an active lifestyle just like anyone my age and you can to! Do not lose hope, I promise it will be OK. Trust me, I am a nurse:)

I couldn't find much out there for young people so I am hoping this site will help guide young women like myself through this confusing, upsetting, painful, laughable, unfashionable, poorly insured, bacon-free, sugarless world of illness. Please check my blog as I write about this new life of mine, and feel free to contact me about anything, I would LOVE to hear from you!

I am learning as I go, so thank you for your patience. I will be adding more as often as possible, check back!!!

No real history.......................

I had a few symptoms during my 20's that told me something weird was going on, but I just wasn’t sure what it was. During stressful events in my life at age 23, there would be times that I could not open my hands, they would just lock up, and I would have to rub them open. This only happened a few times during that year, so I wrote it off to stress and the fact that I was on a computer 8 hours a day. Then a few years later I would have the occasional shoulder pain that would result in me losing the use of my arm for a day or two. I just guessed this was from sleeping on it wrong, but I decided to see a Doctor and figure out what was going on. He told me it was carpal tunnel, I found this strange but figured he knew what he was talking about and thought nothing of it again. Five years passed with nothing, then...................

When the real symptoms started.........

During the spring of 2010 I was always sick. I was exhausted, constantly in pain, having trouble eating, hardly sleeping, and I was becoming very depressed. I was going down hill fast! I could hardly manage to get out of bed and I was just getting by in school. Every virus that passed through town was having its way with me and I was calling my Doctor so much she must have thought I had a crush on her. This went on for months. I decided to make some life style changes. I quit smoking, lost weight, started exercising, and eating healthier. These were big changes from my previous evil ways, but I hardly noticed a difference. How could losing weight, quitting smoking, and exercising leave me feeling awful all the time? It was now the winter of 2010 and I was still not feeling well, my doc sent me to a Gastro specialist thinking my intestines were to blame. The Gastro Doc thought I was crazy but gave me a colonoscopy anyways. I was feeling a bit better after some polyps were removed and figured with some diet changes I would be in tip top shape. I was wrong. Funny thing, I can remember the exact day this disease showed its ugly face. It was New Years Eve and I was working a double. It had been a long weekend of doubles and I was exhausted. I knew I just had to get through that one night and I would have a few days off so, I pushed through. I was in severe pain by the end of my shift, my left foot felt like I was walking on nails, my right finger had swelled up to the size of a bratwurst, and I was walking with a limp. I figured I was getting too old for serving and let it go. Three days later the pain in my foot was still there and my finger was still looking like they should be covered in mustard and grilled onions. So, I went my Doc. She wasn’t sure what was going on and sent me for some x-rays. The x-rays were clear and I returned to her office a few weeks later with a new complaint. Now the same finger in my opposite hand was swollen as well. This is when she decided to give me blood work for RA.

Happy Birthday......................

I was pulling into Chicago to meet some girlfriends for dinner when my phone rang. It was my Doctor calling to tell me I had tested positive for RA and she wanted me to go have more x-rays immediately. My head was spinning, what is RA? Do you not know it is my birthday dinner tonight? I am going to be 30? and I have what? What is going on? I just started crying, I didn't know what to think. All I could picture in my head was the RA commercial that shows the woman with deformed hands. Tonight is my birthday dinner damn it!!! I am supposed to be stuffing my face with cake and wine! Not crying!!! I called the one person I knew who could talk me down of this ledge, my mom. She calmed me down and let me know that no matter what, everything was going to be ok. She told me to go have a good time and enjoy my birthday. I did just that, I stuffed my face to the point of being sick, had way to much wine, and treated myself to a spa day the next morning. But I was terrified and I couldn't stop thinking about what was next.

Now What...............................................

I returned from Chicago and hit the radiologist. I was pretty scared and worrying myself to a state of panic. I was overwhelmed with questions and concerns. I wanted answers and didn't know where to look. I did my best to keep a calm as we made our way to the hospital. I tried to smile as I I nervously sat in the waiting room. I looked at everyone around me wondering if they were curious as to why I was there. I looked just fine. They called my name and I followed the nurse back to the x-ray room. She was very kind which helped relax me a little, she could probably tell how nervous I was. We walked in and the radiology technician began to take pictures of my hands and feet in a series of poses. The tech in charge looked at me in the middle of the imaging and asked "why are you getting these x-rays"? When I told her I had been diagnosed with RA she repeatedly apologized and told me how I was much too young for such a disease. She made RA sound like a death sentence. I started to fight back the tears. What did she mean? Is it that bad? Why was she so sorry? This just sent my feelings of anxiety into overdrive! I held back the tears as I made my way back to my boyfriend in the waiting room. He could tell I was upset and tried to comfort me. As soon as I was in the car I began sobbing. Now the waiting game.

Good News........................

Something I have learned as a nurse is the sicker you are, the faster you get seen. But at the time I did not know this. I was perplexed as to why I wasn't being seen the immediately. I was naive. It was a two-week wait until I met with my Doctor to discuss my x-rays. Those two weeks felt like years. I spent the entire time researching everything I could on RA and man did that scare me! The more I read the worse I felt. Everyone one told me to stay off the message boards, but I didn't listen. I had convinced myself that I was quickly going to lose the use of my hands. I went on a mad dish washing mission. I hate washing dishes. I would rather roof a house than wash dishes. But now I was washing every dish I could. I would stand over the sink washing dishes, crying. Now that I look back on it, I laugh. God, I was a drama queen. But I had convinced myself my life as I knew it was over. The worst thing you have heard about RA, I figured was going to happen to me. I had visions of braces, wheelchairs, surgery; you name it!!! Then the real news........my x-rays were clean!!! My Doc referred me to a specialist, I made an appointment and anxiously waited for the month long so I could figure out how to start feeling better.
But I still worried...............

My first RA visit.......................................Not good

So, my first RA appointment did not go so well. When I walked into the office, I was immediately uncomfortable. I did not like the look of the space at all. It was cold and sterile. Everything in there looked used and dirty. Not a good first impression. My mom agreed with me but told me to give him a chance. There was no one else in the waiting room, so I was called back by the nurse right away. She took my history and left the office in a hurry. I undressed like she instructed and waited on the table. It is never fun to be on the table nervously waiting for the doctor, but my mom usually knows how to lighten the mood. We cracked a few jokes and caught up on People; then the doctor walked in. He smelled of cigarettes and tacos. He had food on his shirt and was acting like a big shot a@@hole. He did not bother looking at my records, and then he started off by insulting me for bringing my mom along, then followed that by insulting her for agreeing to come with me. My face turned bright red, and it took everything I had not to walk out. I let him examine me while he made jokes that were not funny. When he started to examine me I reminded him I didn't have a spleen; he did not reply. Then half way through the exam he told me my spleen was healthy and not swollen. WHAT!!!!!! This had to be an SNL episode, where are the cameras? He ended the examination by telling me I wasn't in as much pain as I said and he gave me some Naproxen. I was fuming!!!!!!

First is the worst, 2nd is the best..........................

I am so grateful that I had the option to choose another doctor after my first appointment with Dr. Dick Head! It is overwhelming looking for providers, and I feel the best way to find a good doctor is by asking around. Luckily, I have a friend whose mom is a nurse, and she also has RA. So, I trusted her judgment. I took her advice and called the doctor she suggested, boy, am I glad I did that. Unfortunately, it was another month wait time to get in, but I understood the reason for the wait. Now, this doctor is in Chicago, and I live three hours away, but I decided it made sense. I have family in Chicago and love a good excuse to do some shopping, so why not get the best medical care. This also makes me dread going far less than I normally would. When the big day came, I was prepared. I had my notebook full of questions and all my medical records from previous appointments. As soon as I walked in the building, I was relaxed. The office was modern, comfortable, and everyone was very kind. This immediately put me at ease. I checked in and started the usual paperwork. I wasn't even done filling it out when they called my name. My mom and I walked back and sat in a room for a few short minutes before my nurse came in. She checked my vitals and told me the Doctor would be right in, and she was! I liked her instantly. She had an incredible bedside manner. She listened to all my questions and helped me to understand why my body being such a jerk. She made great suggestions for supplements to add to my diet. She was incredibly confident and had it together, I trusted her completely. She spent a good amount of time with me and had just returned from an RA conference and had some very useful information for me. After she finished writing my prescriptions said something that has stuck with me, "Carrie, you are young and you will see a cure in your lifetime, for now, we are going to get you feeling better while we wait." Whether or not this is true, I started tearing up. She had given me the most valuable prescription any doctor can write, hope. I left there the happiest I had been in months. I saw a light at the end of the tunnel; I felt like everything was going to be ok. I spent the rest of the day gushing over her like you would a new boyfriend. My mom was just as happy as I was. I left with a plan of attack and have been working at it ever since!