The past 6 years with RA

Six years ago my life changed forever. At seventeen I was diagnosed with juvenile rheumatoid arthritis, and it has taken me six years to fully understand the disease and it implications. At seventeen, I hadn’t a clue how much this would affect the rest of my life. I almost feel as though I were stronger then, maybe because I was much more innocent and naïve. I was forced to become a fighter, whether I wanted to be or not. I can remember the early days when life as I knew it slowly slipped through my fingers. My junior year of high school was spent in limbo of what was “wrong” with me. Countless tests concluded it was JRA, and so the treatment(s) began. Concoctions of pain medicines, anti-inflammatory drugs, steroids and injections were part of my daily routine. On the plus side, we knew what was “wrong” with me, on the negative side; it will most likely never go away. And I had a long road ahead of me.
As we all know, any medication comes with the dreaded “side effects”. Those words alone make me cringe. You see, while all my medication used to target and combat my RA, they also wreaked havoc on other parts of my body; stomach ulcers from my Naproxen, horrible dreams and weight gain with my prednisone, instantly vomiting from my Methotrexate, you get the idea. And due to my suppressed immune system, I contracted a staph infection a few weeks before my senior year of high school. I was hospitalized for two weeks, ten of those days spent in ICU. There was a good chance I wasn’t going to pull through at one point, drawing my entire family together in a hospital room where I lay incoherent. When I finally started coming back around, it had been day number 6, and I was in for a long road to recovery. You see, staph is sneaky, and does not show up in your blood until it’s too late pretty much. It made itself home in my right thigh, and in its beginning stages, flesh eating bacteria was laid on the table as to what it was. Biopsies were taken from my thigh as a last resort before amputating my leg. By the grace of God the staph infection showed its colors, and I was able to keep my leg. (Although fun fact: six years later I still only have about 60% of the feeling in my thigh). During this as well, my blood went toxic and my lungs filled up with fluid, causing yet another mess with my body. So when I came back around on day 6 in ICU, I immediately had to start fighting yet again. Because of the fluid that filled my lungs, I had to build up my breathing, (essentially re-learn how to breathe in my opinion). It was such an accomplishment for me to even be able to sit up, or hobble over to the recliner by my hospital bed. I will never forget how happy I was to be able to take a shower, or to use the bathroom by myself. And I will never forget feeling the sunshine on my face in late August as I was released from Children’s Hospital to start my recovery process. (Long story short, the next few months included antibiotic injections in my pick line, packing the huge holes in my thigh with gauze, and swimming in my clothes since I had lost 30+ pounds because of this ordeal). The one good thing about my horrendous account with staph was that it ran its course and WENT AWAY; my RA will never go away.
Here I am at 23, going through a flare up that has lasted a few weeks now, and I can’t help but break down. I do not have insurance, I cannot afford insurance at this time, and even if I did I am so subconsciously afraid of starting over again with another doctor. I try to not think about my past health issues unless it is necessary because of what a terrible time it was to fight my body while it was fighting itself. Do I want to be on a bunch of prescriptions again? Hell no. But do I want to feel normal? Yes.
At 23 I am much more aware of my body than I was at 17. At 17 I did not take the time to really research my disease. Since I have been hurting for quite some time, I have turned to research and articles and information that I guess wasn’t as big of a deal to me to read when I was younger. What is hard for me is that any dwindling hope that I was misdiagnosed is gone. When I read symptom lists and people’s first hand experiences with RA, it is as though I am looking into a mirror. Just to name some of the major RA symptoms that I personally struggle with, here is goes-
• Hair thinning/loss-between mass amounts of meds and my RA in general; I have lost at least 1/3 of my hair since I was diagnosed.
• Anxiety/stress-my face wrinkles at 23 shows this perfectly.
• Weight loss- dropping weight when you are sick isn’t as awesome when you actually lose it on your own.
• Brain Fog-it’s real! I am not just slow or dumb.
Fatigue/sleep disorders- especially during flare ups, but fatigue is a daily struggle with me. Waking up exhausted day after day wears on you.
• Pain/swelling-my pain does not just stay in my joints alone, it shows no prejudice and I hurt from head to toe at times.
• Depression- because I am human and not being able to ever be 100% or live my life how I wish I could creeps up on me more than your average person. Especially at 23.
I could go on about every symptom but wanted to touch base on the few that really stick out to me so people may not only better understand RA, but me as well. Living day to day with an autoimmune disease is a battle in itself. So here’s to getting through the last 6 years being ill, and thank you to everyone along the way that has pulled me out of the darkness and has comforted me. I have rheumatoid arthritis, but rheumatoid arthritis doesn’t have me.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

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  • judy york
    4 years ago

    I can truly relate to this story because I spent 7 years with no quality of life. I was not a teenager, I was a 52 year old woman, that had never been six in her life. I was the owner of my own business and watched it disappear, due my inability to work, and be force to close the doors. Plexus Worldwide Products are all natural, made with the finest ingredients that really do work. I am a product of the product for 18 months now. I relied on prayer and my relationship with God, for guidance in choosing the direct of all natural versus pharmaceutical medications. I decided to put the all natural products to the test. I saw positive results in nine days, and I have never looked back. If you would like to learn more about my journey, please message me on Facebook: Judy York, Lone Grove, Oklahoma.

  • Mariah Z. Leach moderator
    4 years ago

    Hi Ashley ~ Thank you so much for taking the time to share your story and for being so honest and open with us. RA is difficult to deal with at any age but I think it can be particularly hard to deal with when you are young. But you’ve got my motto right there at the bottom – I have RA, but it doesn’t have me!! I’m impressed by your perserverence and I am so glad that you are staying optimistic. But I also want to emphasize the importance of making sure your RA is properly treated to prevent long term joint damage. Have you looked at getting insurance through the Affordable Care Act? Though I used to be denied because of my “preexisting condition” I was able to get insurance through this Act when I needed it recently. And, as Joni mentions, you may want to look into the possibility of a co-pay assistance program. Depending on which medication your rheumatologist thinks would be best for you some of these programs can cover all or most of the cost. Besty of luck to you! Hang in there! ~Mariah~

  • Joni Lyver
    4 years ago

    Ashley your story brought tears! Brain Fog is real! You are not stupid or dumb!!it took me quite awhile for me to figure that one out! I thought my memory was slipping away minute by minute! Get your rhumitologist to try a biologic that offers help with payment! I needed help and after a lot of phone calls and paperwork the Phizer company picked up the cost of my biologic, Xeljanz, for a whole year! I couldn’t believe it, a whole year. It is helping me manage this awful disease with some grace. Please give it a try. Thanks for sharing your life with us!

  • Kelly Mack moderator
    4 years ago

    Ashley, thanks so much for sharing your story and bravery. Having a chronic illness like RA is scary and painful. Not having insurance and access to medical care makes it even more complicated. I hope that having a community like this site provides some support and comfort. Hang in there and keep fighting. Best, Kelly (Site Moderator)

  • Ashley author
    4 years ago

    Kelly, thank you for allowing me to have an outlet such as this great site to share my story. Since posting this, I truly feel like I am better understood by not only my friends and family, but the world. If anything, being able to relate with others makes me feel so much less alone with this disease. It makes my heart so full knowing that my story is helping others relate and feel less alone too. Thanks again!I hope to write again soon.
    -Ashley

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