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Jessica’s Story (Rheumatoid Arthritis)

Jessica's Story (RA)My name is Jessica Wright. You can call me Jessie. I was diagnosed with sero-negative rheumatoid arthritis just over a year ago after a long battle of going to doctors for the last 6 years, or a little more than that. I noticed my first symptoms over six years ago. I had a terrible back pain on one side that was almost a tearing sensation. It lasted a couple of days so I did not think much about it. I worked as a barber at the time so backaches did not surprise me much. But I started getting really fatigued more than usual and having dizzy spells to the point of fainting. I still thought it was from standing and working all day. I still blew it off as nothing. I was lucky enough to get the opportunity of a lifetime by taking over a shop inside of a bank building and also being the only barber there. I made a great living and had a place to retire. Keep in mind, I am in my 30’s so knowing I had the rest of my life planned in that shop was so exiting. I was living life finally and it was going great!

Not too long after I started working there, I began to feel really fatigued to the point of wanting to lay on the floor. I was still thinking it was stress from the new job and standing for long periods. My husband and I took my daughter to the amusement park one afternoon and I became so weak and ill feeling, we went home. As soon as we got home, I started shaking uncontrollably. My husband took me to the ER and they found out that I had mono. That made the third time that I knew of. Besides that, they wanted to give me a Lyme disease test. I went ahead and took the treatment for Lyme’s and they sent me to an infectious disease doctor to test for Lyme disease again. My test from the ER was positive, but when I went to this doctor it was not.  So we just chalked it up to mono being the culprit. Well, that was the beginning of my long battle.

I started having muscle twitches in my legs, shaking and nerve sensations all over, and ultimately joint and muscle pain. I had many doctor visits checking for RA, multiple sclerosis, myasthenia gravis, and many others. The tests showed nothing. I even saw a couple of rheumatologists, suspecting RA, but my blood work never showed anything. So I was sent to Dallas to a major medical Institution there – still nothing showed up. Keep in mind, this went on for a long period of time. I was then sent to Mayo Clinic. They also told me that they saw nothing and even considered me to have a psychological problem. Let’s just say I left with one, anyway – I was fuming with anger.

Time went on and the symptoms got worse. I just had to figure something out or I just knew I was going to die. The flu-like symptoms were worse than ever. The pain was unbearable and life was beginning to have no meaning to me. I decided to go back to my regular doctor and start over. After sitting at home for a few months, it was time to see someone before I died. I was that sick. He did an ana antibody to check auto-immune disease. It was a low positive so he diagnosed me with lupus until I could see the rheumatologist he set me up with which was 5 months later. In the meantime, I was so sick my dad decided I needed to go check out these natural supplements that were supposed to help with my symptoms – and they did immediately. I finally had my appointment with my rheumatologist. I was not expecting anything since they had not found anything in the last few years. What would be different, I thought. I prepared myself for a huge letdown again.

I saw him that day.  He did x-rays, which no one else did, and within 15 minutes of going home his office called me. “You have rheumatoid arthritis. It is in all of your joints. You need to get on Methotrexate, Plaquenil, ….” and some other meds they were spouting off at the time. I was still at rheumatoid arthritis. I could not believe it. I finally had my diagnoses. I cried because I finally had my answer. I cried because I have rheumatoid arthritis. But I am so happy that I have a diagnoses finally and so is my family.

Today I am not working as a barber. I had to quit my dream job because of my disease, but I am a jewelry designer at home now, loving life and closer to my family than I have ever been. I also wanted to say that my RA is sero-negative. That’s why it never showed in my blood work. If they would have done simple x-rays to begin with, it may have been caught sooner – but things happen for a reason. I love my life, and I appreciate the struggles that got me to this point.

Jessica
Texas
Submitted 2-27-12

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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8 comments

  1. Hi Jessica,

    I’m Jayme, 32 from Toronto Canada. I too am sero-negative your story is very similar to mine. I was recently diagnosed with Ankylosing Spondylitis. I don’t really know how long I truly have been sick as I never really felt right much after 16 however most of my symptoms really began after my son was born. I have been going to doctors for 3 years now pushing for help. All my bloodwork was coming back negative except my TSH (Thyroid) and my ANA’s like you. I too was diagnosed with Lupus and went on Plaquenil which actually made me feel a bit better. 3 rheumatologist later they did an XRAY and an MRI that shows inflammation in my joints as well. Off to the second hospital and another rheumatologist who specializes in Spondylitis and I got my diagnosis in January. I cried too! It was most joyful moment for me to finally know. I begin infusions of Remicade on April 4th and I can’t wait! I truly believe I can get some of my life back, It really is no fun being 32 and feeling 62 when most people just dont understand. I am so grateful for finding this website and reading your story. Thank you so much for sharing.

    • Hey Jayme!

      Wow,!! You sound almost exactly like me!! That is something else. I am really scared of meds because when they first diagnosed me they put me on methotrexate and plaquenil..needless to say I had the shingles within 3 weeks of starting the metho….I had severe shooting pains in my body after a year. I am currently not taking any meds, and I can tell that I am beginning to get deformities in my hands. I am so excited for you!! I hope your infusions put you into remission!!! That would be awesome! My doctor I’m sure is just waiting until I give in…he gives me that look every time I go…LOL..Prayers your way, and I hope you start feeling better really soon!

  2. Hang in there ladies. I was diagnosed in 1975. I have lived a full life, raising children, living on a farm and all that entails. Be proactive in your treatments and LISTEN TO YOUR BODY. If people don’t understand take the time to educate them. RA is a disease that affects the WHOLE BODY AND ALL SYSTEMS. God bless and FIGHT LIKE A GIRL.

    • Hello Aimee!

      Thank you very much for your uplifting comment! I’m hanging in there! I think it’s definitely inspiring for me to read other patient stories! I have learned alot from listening to others, and yours definitely made me smile!

  3. I was diagnosed at24 with RA I am always in pain my hair is falling out from the meds
    I can not work and eventually the nodules on my lungs will kill me. I have 3 kids two
    have disabilities. My 8 yr old has autism and bi polar he hallucinates. Keep fighting u are
    all in my prayers we all need one another no one else understands the pain or fear. Fight on!!!!

    • Hello Sharon and thank you for you comment!

      I am so sorry you are having such a hard time! It’s got to be really tough with children with disabilities on top of yours. You are in my prayers and I hope you have many pain-free days ahead, and also many precious days with your children!

  4. Hi Jessica,
    Thank you for sharing your story. Unfortunately as an adult I know your story all too well… Going from one Doctor after another, Shands, the Mayo Clinic and still being as confused as when I began. They make you second guess your own sanity!!! One thing I’ve learned after being what I call a Professional Patient for 7 yrs, is YOU have to advocate for yourself!!! Don’t back down, make someone listen!!

    I have been Sero- negative since I was diagnosed with JRA at 9 yrs old. I was lucky enough to have doctors that saw a 9 yr old little girl and felt no bias towards me I found that changed when I was an adult. My JRA went into remission almost as quickly as it came. I was 10 and back to gymnastics, trying for forget that horrible time. Unfortunately when I was 19 RA came back with a vengeance. I was quickly disabled by it which scared me out of my mind. Again, it lasted less than 2 yrs. Finally in 2003, it came back and has not left as of yet. This time it brought many friends with it. I have Pulmonary Hypertension as a result of the inflammation, Adrenal Insufficiency, Hashimoto’s Hypothyroid, Ankylosing Spondylitis, AVN in both of my hips.And last but certainly not least SLE and many more which I won’t bother listing. It wasn’t until this past year that I had a positive ANA. But, my C-Reactive Protien is in the high 40’s and my SED rates are as well. Not to mention my joints, well like you said a few xrays!
    I use to be a Paramedic, on the other side of the sick bed. When I became disabled with my RA in 2003 and could not be a Medic anymore I mourned the loss like a death. To me it was a death, I had to let go of the idea that I could be that healthy body, that strong, quick thinking Medic. It was all I had ever known. (Well other than being a mom which was a wonderful blessing don’t get me wrong). I cried for a few weeks, and finally I accepted it. I had to redefine who I was. I knew I was NOT going to let these diseases win. I couldn’t hold a job, but I needed something to keep my mind and body busy.
    This is when you find out who your real friends are! Some people even family members would say “just stop taking your meds, go to the gym”… What ? Aren’t you listening ? Didn’t you know me before this? If it were that simple, it would be DONE! My real friends, they understood, they were there for me. Since I had always suffered with an autoimmune disease I couldn’t use any bath products. Zest soap was about it for me (which is sad on many levels). My friend who is a cosmetologist said “you are allergic to the chemicals, you should make glycerin soap!” And that was the beginning of the new me.
    I started making glycerin soap, and I could use everyone. I was like a kid in a candy store!! I moved to Bath Salts, yep could use those too. Then bath bombs YEP can use those too!! Now my business is doing well, and I can use everything I make!! I have a hard time when I am in a flare (like I am now) but my customers are so supportive!! I take Plaquenil, and Humira Injections currently. Usually I can function well with that combo. I am 44 yrs old, and I remember well, the doctors telling my mom that JRA was a progressive disease and I would be lucky to be walking by 20! Well, No one knows your story, it hasn’t been written yet!! And no matter how many times I get knocked down by my many diseases, I will come back fighting. I have things to do!
    Thanks Again for Sharing!
    Nancy

    • Thank you for sharing Nancy!!

      It’s really nice to hear from someone that really understands what is going on!! I’m so sorry you are dealing with so many illnesses.! My doctor suspected Ankylosing Spondylitis too, but my test was negative..he says it’s inflammatory arthritis of the spine..I guess that is separate from the RA. I hope the very best for you and your family! You are a very tough lady and I think that is awesome!…I also wanted to let you know that I am lucky enough to still cut hair now at a shop that I used to work at a while back. I am really close to the guys that work there..like family, and they want me to work when I can, and I can leave when I start hurting…anytime…I am just lucky and very blessed!

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