Diagnosed at 11 Months Old

Hi, I’m Jennelle and I am 18. I have had RA all my life and only has it been this bad for me. I was in medical remission for 9 years with Remicade. However this ended early this year. It has been getting worse ever since. I had to drop out of college due to the pain. Despite it being a small campus, It would take me 45 minutes to walk to my campus job as it hurt so bad. With this my fatigue was horrible. I would sleep 12 hours and be forced to take 4 hour naps, missing work and classes in the process. Eventually, I had to leave on medical leave. Now I am bed ridden. I use a scooter to get around places like Walmart. My depression gets out of hand as I feel so helpless. I am now filing for disability. I just feel like my life has been ruined from this disease. I wanted to work with children and now I can’t even get on their level. If this is my new normal I don’t know what I will do. If anyone wants to know about my past feel free to message me. I love helping parents with children with JRA.

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

View Comments (2)
  • Ed Burgoyne moderator
    1 year ago

    Hay cuddlebunny, Don’t give up hope just yet! As Richard said, “you are always entitled to a second opinion.”
    I can hardly remember being 18. But I do remember that it can be a very difficult time with just trying to find your place in the world, having dreams for the future. Doing it with RA is something that I cannot imagine doing. Wow you must have a strong spirit. I am well into my 50’s and have had the RA beast riding my back for just 10 years now, but thankfully we got it pushed back into its cage. Sometimes it gets out and we find a way to get it back into captivity. Hope you can find the right whip and chair to tame your beast soon.
    If your situation allows it, you would consider paying a visit or two to a therapist where you can discuss your feelings and emotions about what all has been going on with you lately. Often having a person who can teach you a different way look at how to see things and give tips and tricks on how to mentally deal with lives battles can be a big part of getting through those most difficult days.
    I tip my hat to you and your goal to help children with JRA. I can only imagine how gratifying and heart breaking it can be all at the same time.
    Hang in there, keep fighting and never loose your smile. You will get past this.
    Edward.

  • Richard Faust moderator
    1 year ago

    Thank you for writing Jennelle, but sorry to hear you are struggling. First, you mentioned you were in remission, but clearly you feel your RA is not currently well controlled. Has your rheumatologist suggested any new treatment regimens? Remember, you are always entitled to a second opinion.

    Second, with conditions like RA the emotional aspects of the disease often take a backseat to the physical, but are very real and serious. This article from our editorial team looks at these issues, with some management and support information: https://rheumatoidarthritis.net/living-with-ra/managing-emotional-problems-and-stress/.

    In addition, thought you might be interested in this article from one of our contributors on taking care of mental health: https://rheumatoidarthritis.net/living/taking-care-of-mental-health/#. The author, much like you, was diagnosed as a child and has had to deal with the ups and downs her entire life.

    Please know that you are always welcome here. If you believe more personal support would be helpful, you may want to look into local support groups. Your doctor may be able to help with this. Thank you for being part of this community and please keep us posted on how you are doing. Richard (RheumatoidArthritis.net Team)

  • Poll