Flares & JRA Diagnosis- the long journey from youth to adulthood

I’m feeling like I’m in the beginning to middle stage of the 3rd worst flare of my life. My 1st was in 1987 at the age of 6 years. At the age of 36 now I don’t really remember the actual pain. I do remember how the pain effected my daily life. Always having been very active for a “girlie-girl”, having 2 brothers whom I kept up and tried to surpass in physical activity. I call myself young self a “prissy tomboy”. The sudden, unprovoked swelling of my knee to 4x the size of my thigh, my mom took me to the hospital leading to a week’s stay. She tells me (as I don’t remember except for the knee) that they found arthritis in my knees, ankles, wrists, and a few fingers. Halfway through the hospital stay I could no longer walk. Upon leaving the hospital the Dr. told my mom there was a very good chance that when I graduated HS I’d be crossing the stage in a wheelchair. I was sent home with a walker and remember doing physical therapy to re-learn and be able to walk. I was put on an aspirin regimen as apparently there was nothing else available for me at that age.

Being left out

When I eventually went back to school I wasn’t allowed to participate in PE or recess. I became much more introverted and onto quieter, more still behavior, i.e. reading and watching TV. By first grade the bad flare was under control and my young Mama thought that I’d been miraculously healed. I spent much of my youth alone or playing quiet activities with my younger brother, as my parents worked and were rarely home. I knew there was still “something wrong” but didn’t vocalize it as I was often told I was just being lazy. I spent most of my time on the couch watching TV or reading. Not in pain per say, more that I felt weak, worn out, and always tired, often exhausted. In my teen years I started telling Mama that something wasn’t right, that I wasn’t like my peers, SOMETHING WAS WRONG. I think my mom didn’t want to believe that the RA had never left, scared of what that meant for me she thought that if she didn’t address it, it didn’t exist.

No Sleep and Depression

When I was 17 I started having severe pain only at night in my hips that kept me from getting much sleep. When I was 18 my mom finally admitted to me that she did believe something wasn’t right, however she blamed my maladies on depression. I’m sure I was depressed but my symptoms weren’t a product of my depression, my depression was a product of my symptoms.

Bye for now….

I have to cut this off now as I’ve just been overcome with exhaustion. I will say that I finally got a dxd of JRA again at the age of 30 thanks to an attentive PCP and a wonderful, caring Rheumy. Will tell more about my 24-year journey (from 17 years on) next time. Thank you for reading my story so far!

 

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Comments

View Comments (7)
  • rockcandi author
    9 months ago

    Kat-elton, thank you for reading my story and commenting on it. It means a lot to me that you identify with it and that it helped you in some way. I definitely agree that family members cope by “ignoring”. I’ve found that to be especially true with my mother-in-law the last few years. She’s a huge help to me with household chores so I’m extremely thankful for that blessing. But I would tell her something was going on that was concerning me and she would brush it off. Finally one day I said something to her about her non-responsiveness to me and she said that the reason she doesn’t like to hear what’s going on with me is bc she hates that I’m suffering and knowing she can’t do anything about it. That makes complete sense to me that she’d feel that way. It’s like when my son cries or fusses (at 2 years old he’s still not talking) and I don’t know what he wants or needs so it’s hard and frustrating to hear him cry or fuss and know there’s nothing I can do.

  • kat-elton
    9 months ago

    Hi Rockcandi! Since I was diagnosed at age 2 with JRA, your article stood out to me and it didn’t disappoint! I saw a lot of myself in your story of your early life with JRA- I know the symptoms changed my personality a lot and still does to a lesser extent now when I’m flaring. My family has also had a hard time with certain types of support and disbelief has been a part of that. As I’ve gotten older I’ve realized what you said, that their seeming indifference was part of their coping strategy in dealing with their own grief about my disease. I’m looking forward to reading the rest of your story, thanks so much for sharing, it helps all of us to feel less alone. 🙂

  • rockcandi author
    10 months ago

    Monica, I tried again to post this reply from w/in the thread in which you asked me the question but for some reason my phone will just not let me. You had asked me how I rest my mind. For sure the best thing that works for me is to actually get some sleep. But getting there has taken several tricks for me that don’t always work consistently. When I was a kid and teenager I had developed this meditation of I would picture blue arrows going out of my mouth as I exhaled, blue represented cold which to me is negative, scary, or obsessive thoughts. And on my inhale through my nose I would picture red arrows going into my nose. Red represented warm which to me is comforting, relaxing, etc. I’m no longer able to do it for more than a few seconds. It sounds silly but it worked for me for years. The best thing that works for me now is, instead of trying to quiet my mind which is an impossible task, I will allow it to imagine but I’ll only allow things that make me calm. Like for over a year I’ve been wanting to move into a bigger house w/o any roommates. So I’ll allow myself to picture being in a bigger home, setting it up and decorating it in a way that is my particular disabilities-friendly and in the simple, non-cluttered way, cleaning my home for my husband, son, and myself w/o having to worry about how my mom-in-law & dad-in-law are involved in any way, making supper, playing with my son, eating supper just the three of us at our table, and watching TV with my husband while our son plays in the adjoining play room we must have. I’m not sure how much help that will be to you. It’s just that I know it’s a losing battle to try to shut up my mind so at least if I’m seeing and thinking about things that make me happy, comforted, optimistic, etc, I can get back out of bed when my son wakes up and feel happy, encouraged, optimistic, etc. Even if I don’t get the more complete restoration of actual sleep, when I get out f bed to face the second part of my day, I can at least have a better, happier, healthier attitude. So sorry, I’m a long-winded person by nature but then the Prednisone multiplies it!

  • rockcandi author
    10 months ago

    Monica, I’ve been trying to reply to your last comment on one of your articles about sleep and safari keeps kicking me out. Hope I can get this posted from here and it doesn’t do the same. The meds thing: After my “remission” started when I was about 7 I didn’t see a dr about the RA again until after I was an adult. It was a long road but after I was finally rediagnosed w/ JRA, Lupus, and Sjogrens (Fibromyalgia dxd came a few years later) I have taken several different, & some tried a few different times. It’s a long story so I’ll wait until I post to explain about all the different drs. So when I was 30 is when I started the medication journey. In the last 6 years I’ve taken Plaquenil, Methotrexate tabs, Enbrel injections, Azathioprine, Leflunomide, Actemra injections, and Methotrexate injections. I think there was one more oral one but I can’t remember the name and of course there have been high dose Prednisone tapers and low dose Prednisone long term. The latest thing is that my insurance took Actemra off of their formulary so after all that time and all those meds trying to find what worked and it seemed like the right combo was going to be Actemra and Methotrexate at home injections (for both) we had to stop the Actemra. Which is why I flared up so badly and am down from 40 to 30 mg of Prednisone at this point of my taper. I also asked my rheumy last week if I could stop the Methotrexate (had only added the shots 2 months ago) at least long enough to try the newest medication by itself. I’ve been trying for so long, what’s a few more months right? So she said it’s fine but if the Xeljanz (starting it tonight) doesn’t help w/in 2 months, we’re not going to add the MTX shots back to it. Instead she said we can no longer put off doing infusions. So if I’m not seeing good results soon, we’re stopping the Xeljanz too and will begin infusions. I don’t have an aversion to infusions, as long as it’s not Methotrexate or something that’s going to make me feel as miserable as that. The only reason I’ve been trying to avoid them is bc I’m going to have to go an hour away from home and if I won’t be allowed to drive myself home I have no one except my husband which means he’ll have to miss work once a month to take me.

  • Monica Y. Sengupta moderator
    10 months ago

    Hey rockcandi!!

    I loved reading more about you and your journey with RA. I really appreciate you commenting on my articles and my experiences so now I can do the same for you!

    I am so sorry you dealt with this kind of pain and fatigue from such an early age. May I ask if and when you started medications? I know a fair few are not used for children so I wondered at what age you were able to start them (If you are comfortable sharing!!)

    I can’t wait to read more of your story! ~Monica (RheumatoidArthritis.net Team)

  • rockcandi author
    10 months ago

    Thank you Erin! It’s nice to know that others care about what I have to say and it was sweet of you to compliment my writing style. Meant so much more than you know for me to read your words. I am promising myself to stick to writing and reading stories and other types of posts in this wonderful community. It’s already been a great outlet for me. Writing always has been my best outlet, and to read that others are going through and feeling the same things I am has been huge for me. My family lives 2000 miles away and my husbands family is who I spend my time with. I text with my mom and aunt daily and my grandpa and I talk as often as possible but it’s just not the same as being in the same room with them. So the person I talk to most often is my husband, and while he’s very sympathetic and patient with me at times, he gets so frustrated with these diseases (I have JRA, Lupus, Fibromyalgia, & Sjogrens) and how much they effect my, & in turn his and our sons lives. I know he gets to the point often that he just doesn’t want to talk about it bc he’s been watching me go through it w/o complaint and when I voice my “complaints” it means he has to really think about it and think about the fact that there’s nothing he can do about it. Okay, 40 mg of Prednisone a day for 4 days is making me babble. And I can’t think straight now. Anyway, thanks again!

  • Erin Rush moderator
    10 months ago

    Hi rockcandi! Thank you so much for sharing a part of your story with the RheumatoidArthritis.net community! I am sorry it took such a long time to get a proper diagnosis. Unfortunately, your story is not unusual. We have a number of members that were diagnosed with JRA. Two of our contributors, Kelly Mack and Tamara Haag, dealt with RS issues from a very young age, just like you. Tamara shared part of her childhood in this piece — https://rheumatoidarthritis.net/living/childhood-ace-bandages/. While I am sorry you had to go through this, I do look forward to the next part of your story. I know many of our members can relate and you have a very nice way of writing that is very readable and thought provoking. Thank you again for sharing! Best, Erin, RheumatoidArthritis.net Team Member.

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