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Home » Juvenile Arthritis » Parents and Parenting » 19 yrs of JRA

19 yrs of JRA Expand / Collapse
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Mandy
Posted Friday, December 05, 2003 12:33 PM


 

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Hello to everyone. I am 19 yrs old and I have had JRA since I was 11 months old. I understand how hard it is and I have had my ups and downs. I underwent a double hip replacement in June and a double knee replacement on oct 2. It has been the hardest time in my life and everyday I hope that things will get better. If any of you have any questions please feel free to ask me. I have been on more medications than I can count and have seen many doctors. JRA is not hereidtary in my family so doctors are sometimes in question how this diesease came about. If anyone has questions, please feel free to ask.
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TerryB
Posted Friday, December 05, 2003 1:18 PM


 

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Mandy, Do you have any deformity and, if so, how did you deal with it socially? My daughter doesn't seem to be self-conscious at all but she is only 4. Other parents do notice. Thanks for opening yourself up to this. I do worry terribly about it all.
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CynthiaJ
Posted Friday, December 05, 2003 4:31 PM


 

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Mandy- My daughter, who has the same name Mandy, has a deformity in her left leg. I am in the same position as Terry. How do you deal with it socially? How did your parents handle difficult situations? Just curious- I sometimes dont know how to act and I worry as well. Terry- How has Ryan been doing lately? Take care Cindy
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TerryB
Posted Friday, December 05, 2003 7:02 PM


 

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Cynthia, I just posted a long update on Ryan. Thanks for asking. Any news for Mandy? She must have an apt coming up soon to clarify the diagnosis?
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Jill
Posted Friday, December 05, 2003 8:55 PM


 

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Mandy, thank you for letting us ask you some questions. My daughter is 3 years old without a firm diagnosis. Every time we take her for blood work she gets more and more upset (understatement). Instead of getting easier it just gets more difficult. Do you remember how old you were when you calmly accepted blood work or shots as part of the process? How are you doing after these major surgeries?
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Mandy
Posted Saturday, December 06, 2003 12:51 PM


 

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Hello Jill. I completely understand the whole blood work ordeal. For the last 19 years I have had blood work done every 3 months and many injections. To be honest with you I still dont like to have blood work done and I hate shots. Blood work got easier for me probably when I was about 10 years old. Im always scared when I have to have blood work because they usually have to stick 2-3 times because my veins are very small and deep. It will get better though, I promise. Its also easier to deal with when the person thats doing it is good at drawing blood and if its constantly that same person that draws my blood. it makes it a little easier to be calm. Now that I have had my surgeries it is very hard because I have never walked normal and now I have all these bad habits to break. Its been extremely painful and I have been doing warm water pool therapy to help my pain level along with pain meds. If you have any more questions please feel free to ask.
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Mandy
Posted Saturday, December 06, 2003 1:02 PM


 

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Hello Terry. I had a major deformity before my major surgeries. My knees were stuck in a bent position and my butt stuck out a lot because my hips were rotated and very damaged. And the upper half of my body was pushed out and I limped to the right. Now after my surgery everything is alligned but my butt does stick out a little bit because my muscle is still weak. Socially its very hard. When I was younger my body was not as deformed as when I got older. Over time my body grew and my bones grew in all the deformed ways because of the JRA so over time my posture got increasiling worse causing me to be hunched over and limp. My limp then caused my hips to deteriorate and then thats why I had to have my surgeries. When I was younger it wasnt hard, all the kids accepted me. It was high school that was hard and I was often made fun of. I think the thing that kept me going was that my parents never treated me like I was handicapp, I had a perfectly normal life. I learned to drive, met my boyfriend of 3 years now and I went to homecoming and prom with my good friends. The thing I learned is in high school I was very optimistic and kids started seeing that and I was accepted a lot more the last two years and became popular because I was so optimistic. My last year in high school I wrote an article in the school paper all about my diesease and how I dealt with it and I got a lot of positive feedback from other kids because of it. If you have anymore questions just ask me. thanks.
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Mandy
Posted Saturday, December 06, 2003 1:11 PM


 

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Hi Cynthia. Well as I told Terry it was the hardest in high school, socially. I was very optimistic and outgoing in high school and kids started accepting me more. I wrote an article in the school paper which explained my diesease and how i dealt with it and alot of kids started to be more positive toward me. It has defenitly been hard for my parents. I have been looked at a lot in public mainly by smaller kids who really dont undertsand why I walk like I do and just wonder why. My parents have always treated me normally and let me do things that all the other kids do, they've never been protective or anything because of my JRA. Ithink they did this because in thier eyes I was normal and thats why I am so optimistic today. As a parent you have to be strong for your child and in return your child will be strong because of your help. If you have any more questions, just ask.
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TerryB
Posted Sunday, December 07, 2003 4:56 AM


 

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What meds are you on now Mandy? What are you optimistic about? Do you force yourself to be optimistic or does it come naturally? What are your plans for life? I'm really impressed with your attitude.
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Mandy
Posted Tuesday, December 09, 2003 1:30 PM


 

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Right now I am taking only Vioxx and it helps a lot. I have to take Prevacid with it just because it can make my stomach a little upset. And then I am on pain pills just because of my surgery but thats one one pain med. When I was younger I took a lot of meds but now I only take Vioxx for the RA. Being optimitic comes natural to me. There are times when I can get upset because I feel sore but I get through it. I am optimistic because when I got into high school I realized that when people said things I couldnt let them hurt me so I would just be optimistic and say "well I am sorry you feel that way" and a lot of people started realizing that even if they said anything its not like I would break down and cry I would just treat them like they were not even talking to me. My second year of high school I gained a lot more confidence and realized I couldnt feel sorry for myself because that makes kidspick on you more. My friends were very loyal too and never let anyone push me around, so that helped. Dont get me wrong things get rough at times but I have a lot of friends and family that wont let me give up on myself so I feel very lucky. My plans for the future are to marry my boyfriend of almost 4 years who makes me the happiest person in the world and to have a good career and a loving family. I will be starting college in Jan and I am very excited but nervous too. Thanks for being so impressed and I hope I helped you out on some questions. If you have anymore just let me know!
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Deniece V
Posted Thursday, December 11, 2003 11:55 AM


 

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dear mandy, hellow my name is brittney and i have JRA.I have had it since i was 5 and i am 12 years old now. I was wondering what Vioxx is sposed to do and how it made you feel and if it helped you. the doctors want to put me on remicad which is intervines and i am kind of scared to have it done b/c i am not good with needels b/c when i was 7 i had to have my knee drianed awake and it was very scary and summer vaction last year i almost had to have surgury on my knee and they poked me 9 times with 3 diffrent people and they would get the iv under my skin and dig around looking for a vein.but right now i am on 25 mg of mtx and i dont no what that is suposed to do. and my doctor is finding JRA in new places almost every time we go there.i have to go to the doctors to get blood drawn every 6 weeks i am getting better every now and then with it. well i hope everything gets better with you best wishes brittney vithous my email address is outlawjd@msn.com if you want to chat. thanks
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