Things I’ve Never Told Anyone…

 Hey everyone! I hope you are having a great day! I’m A little exhausted because my daughter woke me up before 7 today and i was up watching the benefit concert last night! But i had an early Dr. appointment today so seeing as how hard it is for me to get up on my own I guess it’s good she woke me up. I made it to the appointment on time. Now, of course I am so tired and being a mom with RA can be quite challenging at times. When she wants to play outside or dance or run around, most of the time I’m too fatigued or sore to do anything and I feel horrible. This is why I am getting the joint replacements. So, hopefully when I’m done, I will be in less pain and have more mobility so I can actually be a better mom! And now having a 10 year old step daughter who always wants to go do something i feel guilty all the time because I can’t do a lot with them. The guilt is the worst.
 
Even though it can be challenging, she is the best thing that ever happened to me. She makes me laugh at times i really need a pick me up. She has the cutest personality even though she can be completely out of control some of the time. She is getting to be very helpful and when i have surgery, she kisses my “boo boos”. She can be the sweetest little girl.  My step daughter is very understanding, also. She helps when i need it and i give her chores and allowance so she feels like shes earning money while she helps out. Sometimes, I just have to suck it up and no matter how fatigued or sore I am, i get up and let them chase me or dance with them because they are my favorite girls and I want them to have fun with me and not grow up only remembering mommy always being “sick” or tired and laying on the couch.
 
My biggest fear when I got pregnant with my daughter was that she will get JRA. My OB reassured me I can’t pass it down to her. There are other types of Arthritis that can be hereditary but according to my OB and her pediatrician, I have nothing to worry about. She has passed the age that I was diagnosed and shows no signs at all of any kind of Arthritis. What a relief! I know what it’s like to grow up with JRA and I would definitely NOT want that for my daughter. Between the chronic pain and stiffness, missing school and cruel kids, I’d feel nothing but guilt if I passed it on. Growing up, I always had a smile on my face at school or in front of other people, no matter how much pain I was in. But at home, I cried a lot! The pain was unbearable sometimes, especially on days I woke up stiff. On top of that, I was deformed in every joint and walked “funny” so a few kids did make fun of me. I had a lot of friends though because I didn’t let it bring me down and the few kids that did make fun of me were immature kids and I just ignored them. I usually never even mentioned it to my parents. Maybe once or twice I did when it really bothered me but that’s it.

I was always insecure about the way I looked and got embarrassed when I couldn’t participate in gym class or do regular things the other kids could do. I grew up with very low self esteem. Especially in high school when everyone in school was dating accept me.  I got depressed at times but never showed it. I knew, or at least assumed, that the guys didn’t want to date a girl that walks funny and has funny looking hands when they could be with someone “normal”. But honestly, I had a good personality but I was very shy because of the insecurities so the shyness probably had more to do with it than anything. I know there are guys that don’t want to be with a handicapped girl but looking back, I think if I was more like I am today (talkative, funny, kinda crazy personality, etc.) I probably would have dated. My insecurities took over and if a guy talked to me i became very shy and quiet. I was too embarrassed to talk in front of class or just a group of friends because i assumed all they were looking at was my deformed hands.  Once I graduated, I grew out of that and didn’t care what people thought and suddenly I had boyfriends! If it bothers them, it’s their problem. NOT MINE. Remember that! You are NO different than anyone else! You still have your own unique personality so forget about what you look like or what you can’t do and take on the things you can!! Smile, make jokes and act like it doesn’t bother you even if it does! Otherwise it will depress you and drive you crazy. It did for me and took me too long to realize it. 

The best advice I can give kids, young adults or parents of a child with JRA is live life like anyone else would. DO NOT LET THIS DISEASE TAKE OVER YOUR LIFE! I did for 18 years and it wasn’t good. Granted I now have ptsd but it has a lot to do with other things that happened and the fact that I can not take care of my daughter when i get surgeries. It will go away and it’s under control now. If your friends are doing something you can’t do, cheer them on. Then tell them, “hey, now can we do something else that i can join in on?” Parents, treat your child like any other but also be understanding that they are in pain and when they sleep a lot they aren’t lazy. They are fatigued.  And kids and young adults, STAY ACTIVE. I know that its easier said than done. Believe me. BUT I was told that i would be in a wheelchair by 10 years old and that i would never be able to have kids. I am 31 and no wheelchair and a 3 year old!! I kept going to physical therapy every week and aside from regular exercises, we did water therapy. Water therapy and swimming is THE BEST thing you can do. You are weightless so no pressure on your joints. If you don’t have a pool, join the ymca or a local public pool. I did swimming classes just for exercising during the winter and in middle school I did synchronized swimming. It really is the best physical therapy you can do!! I can not stress that enough. This is for parents and children. If you sit around when you are in pain, you are going to get stiff and your joints will eventually stay that way. They will bend and never move again, hence my deformities. But I stayed active as I started getting older by joining clubs at school, hanging out with friends no matter how bad I felt and when I was old enough i started working, going to school and doing community service. 

So, no matter how embarrassed you are (and i still get embarrassed sometimes so its perfectly normal!), how much pain you are in, how much you THINK people are staring at you (even if they are) put a smile on your face. Talk to people with a smile and a joke and stay as active as your body will let you. If I did not do that, I would be in a wheelchair now. But i am living proof that if you stick with PT and do as many things that other people do as you can, you can live a somewhat normal and happy life. Its okay to have bad days. Its okay to get a little depressed or even feel sorry for yourself every once in a while. We are all human so don’t beat yourself up. Just have a “JRA SUCKS day” and then pick yourself up and say, “I don’t care! I’m ME and that’s fine!!”. You will feel better if you do! I promise! 

I hope this helps some of you. Some of this is stuff I never told anyone but if it helps you get through the day, I am willing to share anything! Feel free to ask anything you want, comment on anything i said or give advice! Have a great weekend my new friends! And remember, you are unique and there is NOTHING wrong with that! There is a purpose for you and you will find it! I found mine! This is it! And you know what? I feel so much better about myself now that I know I may be helping just one person! Thanks for reading and sticking with me! 

Love from the Bionic Mom.    SMILE EVERYDAY!   ;)
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17 thoughts on “Things I’ve Never Told Anyone…

  1. Reading this, the 2 things that crossed my mind were Dante (punk ass) & calling u mute at CiCi’s LOL. I would like to think family support plays a big role in recovery :). Growing up watching my big sister suffer with JRA was devastating even though I know I didn’t show it & should have done a lot more to help. You didn’t know this but I idolized you, Julie. I couldn’t imagine dealing with what you did on a daily basis & your positive attitude was truly
    inspirational. Still is. You did breakdown occasionally at home & my biggest regret was not understanding the severity of your physical & emotional pain. I’m so proud if you. I’m proud that your reaching out to help others now & I’m proud to have such an amazing sister. I will always support 110%. I love u Juliepuff.

    • Well thanks Steph. I appreciate you’re understanding and support. It means a lot that you said this now and told me how you feel. =) I got chills when i read this. I dont hold a grudge or anything. People who don’t have this horrific disease don’t really know what it does or how it feels. This is the best way for me to show family, friends and other people in the same situation how it is. I love what you said and I really do thank you for it.

  2. Thank you for your honesty. I too just recently started a blog about having RA. It’s hard to publicize your personal life, but I find it feels very freeing to let it all hang out! Can I put a link on my blog to yours?

    • Of course you can and feel free to post yours on mine! spreading the word and helping is our goal right? =) and yes it is hard to “air our dirty laundry” so they say or our most personal feelings but it does feel better to share and get it out and as you can see from my sisters comment, it also helps people who don’t have it, understand a little better what you are going through. I’m glad people are understanding about it now and there are things she said that i never knew so its sort of a form of therapy! Don’t forget to post your link. I would do it for you but i want to make sure you want to before doing it. =) Thanks for your comment and reading my story!

  3. Well said. Your childhood and motherhood sound pretty much identical to mine! I was dx’ed at age 5 and am now 53. My kids are grown and I like to think that having a handicapped Mom make them better, more compassionate people. No, I couldn’t always do everything with them, but the things I could do, were the important things. Talk. Read. Hug. Just being there. I started getting joint replacements when I was 37 and my youngest was about 6. Luckily my mother was able to come help out. Later, the kids were old enough to be pretty much self sufficient when I was laid up.

    Hang in there, Mom, you’re doing great!

    • Wow! Our stories are identical! I’m glad you were able to do it all! How many kids do you have? And how were the pregnancies? I completely agree. My girls will be compassionate and more helpful, good people because of this. They already are! =) What did you have replaced? And im very grateful my mom is here to help. If it wasn’t for her living with my husband and me, i wouldn’t be able to get the surgeries done and im doing them mostly for the girls. I want them to have a better quality of life and by getting surgeries it means less pain and more fun things to do! If mom wasn’t here, I dont know what I would do. I’m lucky she has been so hands on my whole life. It couldn’t have been easy taking me to PT when I was little and making sure I kept up with it, my siblings helping me put my socks on which i know they must have hated!! haha Dr appts all the time, swimming lessons just to keep my joints moving, etc. And now living with me still at 31 years old. My mom should be out dating and having her own life but it now revolves around my daughter and me. I wish it didn’t have to be that way. I feel guilty for her all the time too because even though she doesn’t complain, I know there are things she could be doing to get on with her own life. :/ I owe her my life. Literally. But when this is done and over it will all be worth it! Thank you for reading my story and sharing yours! I’d love to hear more about you!

  4. I so appreciate you sharing your experiences and thoughts. I have RA and my 13 year old son has systemic JA. He always says “you’re not fully dressed without a smile”….looks like you might have a few things in common.

    • Hi Rochelle! Wow. We really do have a lot in common. Not just the obvious. I was just watching Annie and Shirley Temple with my 3 year old last night (she LOVES musicals) and the next quote i was going to write at the end of my blog is “you’re never fully dressed without a smile”!!! I just read your comment and literally said really loud, “O…M….G! He says the same thing i was JUST going to write!!” hahaha he sounds like a great kid! Great minds think a like! And i had no idea you AND your son had a form of Arthritis. I know it’s hard taking care of a child when you have RA. I can’t imagine taking care of one, on one of my bad days, who also has it. You are a strong woman!!

  5. As someone who also grew up with JRA, I relate to much of what you wrote. Really great advice here, especially about being yourself. Thanks for being brave enough to share :) All the best!

    • Hi rarainbow! Thanks for reading. I’m glad you can relate. Is always good to know we aren’t alone. Just wish we figured it out years ago! :) Hope you’re doing well and pain free!

  6. Thanks so much Julie! Would it be okay if I add your blog to my bloglist on my site? You have great information, especially for those young woman who are growing up with JRA. Good luck with all your surgeries and wishing you pain-free days as well! :)

    • Wow! Yes! That would be great!! Did you see i have a donation page now? That will definitely help! Thanks for sharing my story on your page! I just noticed you had a page so im going there now! =)

        • Thank you so much! You’re site is great also! feel free to leave your site name in a comment here for people to see. I don’t have a specific section for other blogs and I don’t want to do it without your permission so if you’d like, leave a comment with your blog URL. Thanks again for putting mine on yours!!

  7. Your blog is so inspirational to me. I was diagnosed when I was 6 with JRA and am now 29 and am dealing with RA. I have never had surgery or anything and am actually a little terrified of it. I am not married and do not have any kids, but hoping one day I will. One of my fears has always been that my children would also have this. My childhood was very rough and everything you wrote was so similar to what I went through. I tried as much as I could to hide it from everyone around me. I even hid it from guys that I dated. I was very obsessed with wanting to be normal… I always felt so alone.. And still deal with a lot now.. So you posting this blog is soo refreshing. I am not ashamed of having RA anymore now that I’m older. I was such a pro at hiding my pain in the past and even now, that I am actually having to work on being upfront and honest about how I feel with my doctors.
    reading this has really lifted my spirits tonight :-) thank you.
    -BETHANY

    • hi Bethany! Thank you so much for your great comment! You actually lifted my spirits tonight. :-) I am so sorry to hear how hard it was for you growing up. It was very hard for me to hide it from anyone because it was always so visible my whole life. But I completely understand why you did because I would have to if I could have. If you don’t mind me asking did you have deformities or joint damage growing up that was visible?I was always afraid that my children would have it as well but I was always told growing up that I either could not have kids or if I could they would not have it because JRA is not hereditary like a lot of other juvenile arthritis or arthritis types are now. I only have my little Layla now and because of all of my surgeries and my joints getting worse since having my daughter I would be very high risk if I were to have another one as much as I would love to. I want another one really bad and it makes me sad that I can’t but at least I have my little baby so I am lucky for that. Have you asked the doctors if you could have kids and they would be healthy? you mentioned that you’ve never had surgery and you are terrified of it so I’m wondering if you’ve been told that you need it? Or maybe you think that you do in some areas? even though I couldn’t hide it I was also very obsessed with wanting to be normal. There are things in my blog that I don’t talk about but as far as wanting to be normal let’s just say I hung out with the wrong crowd and did things I thought were normal. Even as an adult in my early 20’s I wanted to be normal so bad that I partied a lot and thought that that would make me feel normal but like you said I still felt alone because nobody understood. If I couldn’t do something they didn’t understand why or I would just force myself to walk as much as them or keep on going even though I was in so much pain and knew that the next day I would regret it.and started this blog because I was told that my story would help other people but it actually has helped me because I have been able to connect with so many other people and realize that I’m not alone and that they have been through a lot of the same things that I have been through and have a lot of the same illnesses that come from arthritis that I have as well. That was one of my biggest things was I did not think that anybody had as many diseases as I did so nobody would understand because they just had arthritis. In actuality I found out that it is actually pretty common for people with arthritis to get all of these other illnesses as well. I still get a little down sometimes because of it and have my way whiny moments so I am just like everybody else. I am NOT trying to pretend that I am always positive and not mad that it happened to me sometimes. I am mad that it happened but I am putting it in a positive way by trying to help other people and have begun to think that it happened for a reason and that reason is so I can share my story with others and hopefully soon will be public speaking about it which is what I have wanted to do in the last year since I started this.don’t be ashamed to tell the doctors how you feel because you need the treatment and you will feel better if you do. And it doesn’t hurt to try other things like I did. I never in my life thought I would try different diets or supplements like I am doing now. And now I am on a gluten free diet and on several supplements. Since being on two of the supplements and the gluten free diet that JRA went into complete remission and my blood results came back almost perfect for the first time since I was a year old. I’m not going to lie I have cheated on my diet because it’s not cheap and I miss some of my favorite foods. Haha :-) so I really believe that 2 of the supplements that I have been on religiously since I started seeing my alternative dietitian are the reasons that I went into remission. I’ve never in my life had such good results to the point that my Rheumatologist thought he had the wrong persons blood results in front of him. he kept looking at me and then back at the computer and then back at me and then back at the computer and so on until I finally said what is wrong with me? Lol and he finally said “your Inflammation is great, your rheumatoid factor is great, you are immune system is perfect and your vitamin D levels are excellent. I thought I had somebody else’s result in front of me.” he knew they were mine of course because he’s been my Rheumatologist for a few years and you can just look at me and know that I have it. If you’ve seen the pictures on my blog just looking at my hands give it away right there.I am so glad that reading my story has helped you and it makes me feel really good that I am doing this. If you need to talk at all about anything that you don’t want to post here, just comment and let me know and I will email you, even if you just need somebody to talk to that you can relate to or have any questions for me. Or even if you want to vent. If you don’t want to answer some of my questions in a comment just let me know and I will email you at the email address you put in when you wrote this comment to me. I really think we have a lot in common and reading your comment and responding to it actually got me a little emotional. Lol so if you need somebody to talk to I am here. Thank you so much again just for letting me know your story and what you went through and that my story helped you because that helps me as well and makes happy that I’m letting it all out there and talking about, and showing pictures of things that I was always embarrassed about. Now that I know it has helped some people, I don’t mind doing it at all. In fact it makes me happy knowing that it has helped so many people. I hope you are feeling great and having a great night and I hope to hear from you soon. :-)

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