Friday, November 13, 2015

My Rheumatoid Arthritis Journey


I have been meaning to write this post for a while now but, every time I sat down to write, I just couldn't. For one, it is a longggggg story and trying to keep it short and concise didn't seem possible. Also, it's all still kind of emotional for me. However, I was just browsing on Pinterest and saw this pin that said "10 signs you have an Autoimmune Disease and how to cure it" and it actually made me sort of mad and gave me some inspiration to write this post. It has also been a little over a year since the beginning of my journey with Rheumatoid Arthritis, and it seems like good timing.

Starting in May 2014, I gradually started to develop pain in my feet along with some swelling. At this point I was working anywhere between 50 and 60 hours a week between two jobs, and both jobs required being on my feet a lot. Basically, I didn't think much of it. Obviously my feet were hurting because I was on them for an extensive amount of time repetitively. I started to take Motrin routinely and made a conscious effort to wear compression socks and elevate my feet as much as possible.

Well, weeks went on and the pain started to get worse. The pain was all over my feet; toes, top of my feet, the bottom, the heels, every inch of my feet were in pain. Walking up and down stairs was brutal. It felt like the back of my heels were stretching apart with each step. It was also worse in the morning. Getting out of bed was seriously starting to become a chore. As soon as I opened my eyes in the morning I could feel the swelling and pain. I would wince and moan in pain as I first started to bear weight on my feet. At this point, the only thing that made it better was to get moving. It hurt like hell for the first hour or so of being on my feet but, it was bearable after that.

Once again I started to do some research and talked to various health care providers that I knew personally. All of my symptoms lead me to believe I had Plantar Fasciitis. I went out and bought new supportive sneakers, and continued taking antiinflammatories. My wonderful boss at the restaurant I worked at also had experience with the painful condition, and he gave me this awesome foot board to practice certain stretches.

More weeks passed by, and nothing was helping. I finally caved and made a doctors appointment. I was pretty damn miserable at this point. I was crying a lot, and was just cranky and bitchy the majority of the time. I vividly remembering walking down the stairs in the morning step by step, slow as molasses, and my Mom would always be in the living room having coffee and I would just sit down next to her in tears because walking down a flight of stairs was that painful and miserable.

Finally the day of my doctor appointment comes and I was hopeful to get some answers. Well, at this point I still saw my pediatrician. She comes in and goes on to tell me how she can't treat me because I was too old. I was under the impression that I could see her until I was out of college. Why the office couldn't tell me this when I made the appointment was beyond me and I was beyond pissed off. Yes, maybe it was my fault and I should have known but, I was in some serious pain and now I needed to wait even longer to find a new doctor and make a new appointment… I wish I was making this up.

It's almost July by this point. I found a new doctor, and made a new appointment. Well, we all know how those things work and the closest appointment wasn't until early August. I continued to deal with the pain as best as I could but, it was really starting to have an effect on my daily life. It was also around this time that I started to notice the same pain I was having in my feet, I was having in my fingers, hands, and shoulders. I didn't want to go to work, I didn't want to hang out with my friends and go to the beach like a young 22 year old should be doing on Cape Cod in the summer. I wanted to stay home and put my feet up with bags of peas wrapped around my feet. I honestly avoided everything.

The breaking point for me was when my boyfriend planned a day date for us. We live about an hour apart from each other and we had opposite working schedules so we didn't see each other as much as we liked. He was sweet enough to plan a whole day of fun stuff for us to do. We were walking around Chatham, shopping in all the cute little stores and enjoying a beautiful summer day. When I think of that day, all I think about is how miserable and uncomfortable I was. Here I was with my boyfriend who I pretty much never saw, who planned a whole day just for us, and all I could focus on was how much pain I was in. I broke down crying and just wanted to go home. That's when I had it, and when I really realized I needed to do something because something was wrong.

-- TOO FUNNY

I ended up going to an urgent care clinic. The doctor recommended doing some lab work and a tapered dose of prednisone to relieve my discomfort. The steroid was a 10 day dose pack and WOW… I felt fabulous for those 10 days! The swelling, redness around my joints and pain all went away. I was myself again! Unfortunately, that didn't last long and I was right back to where I was 10 days prior.

Towards the end of August I was finally able to see my primary care physician. After reviewing my symptoms and lab work he referred me to a rheumatologist. The only problem being that I was leaving for college three hours away from home in a few weeks and there was no way a specialist was going to fit me in before then. As much as I didn't want to, I decided to set up an appointment with a rheumatologist that was near my school.

My first appointment with my rheumatologist was in the beginning of October. We must have talked for over an hour about the events that have happened since May. He was so thorough and really listened to what I was saying. After reviewing my labs, X-rays, symptoms and some assessments he told me I have rheumatoid arthritis. Finally… an answer! We started talking about treatment options and after going back and fourth with questions and answers we decided to start me on Methotrexate. I continued to see my rheumatologist every 3-4 weeks until May 2015. There was a lot of medications adjustments, lab work, etc which was the reason I needed to see him so often.




So how am I doing now? GREAT! Of course I have flare-ups and some days are better than others but, I have come to accept that. I currently take a few different medications to manage my RA. Methotrexate, Enbrel, and Nabumetone. It took a lot of trial and error with doses and medications to see what worked for me. Cortisone shots during really tough flares were helpful too. Not to mention all the non-pharmalogical methods I do and use to manage my RA. But, it all feels like a distant memory now. I was hanging out with my best friend Carly one day last April and she looks at me and says "You seem so much happier lately". I think that was the moment where I finally realized I was, and that I was myself again. The pain from RA is just miserable, cruel and can really effect your day to day life.

I am so thankful to have found a beyond wonderful rheumatologist and that I am able to have treatment for my RA. Everybody is different and what works for me, might not work for you or be the treatment option you would choose. Some people with RA choose to manage it holistically, or with their diet and thats great. No one knows your body like you do, so listen to it and treat it right however you choose.

I share my story in hopes of helping others who are in a similar situation. I love hearing from readers, so please leave comments, messages, email etc if you have any questions, or want to share your story because I would love to hear them!





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