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hawaiiangrl85
Posted Thursday, November 30, 2006 12:46 PM


 

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Well this is my 1st time here, so for background info My name is Erin, I'm 20 years old and diagnosed with severe rheumatoid arthris in sept of 05, but the doctors believe I have had it since i was about 15. So going untreated for so many years the disease has progressed drastically and spread everywhere. I was just recently informed that its possible I will be in a wheelchair by the time I'm 30 if i can't get into remission. While finding this out I was also tested for TB (tuberculosis) before i was able to start any meds and I am also now a carrier for it, although it isnt active in my body I still have to take medications for it. I'm currently taking about 20+ pills a day, I am on Methotrexate, plaquenil, sulfasalazine, folic acid, Ibuprofen, Isoniazid, and tylenol w/codeine for the pain (what a joke!) They want to start me on injections of enbrel, humira, or methotrexate but are too scared of the TB becoming active and my body not being able to fight it off because of all the meds affecting my immune system. So on top of all that about 3 weeks ago I was in the emergency room with signs of a stroke, had a cat scan done and all they could confirm was having severe vertigo and gave me yet another medicine. So i go to my primary physician a few days later for a check up and my regular blood test results are back that i get done every 2 weeks and now my platelet count is high and i get yet another medicine to thin my blood. Plus heart disease runs in my family, my father and grandfather both died of heart attacks, so now im being monitored for the clots. I'm going insane! I'm not even legal drinking age yet and i feel doomed! Before all of this happend I was working 2 jobs and starting college, and now it feels like I dont even have a future, or much of one if I do. I turn 21 in about a week and I just want to be a normal 21 year old and have my 1st drink at dinner and just whip out the ID, like HA! I'm 21! lol but i cant I have plenty of friends and they feel bad and are there for me, but they dont understand. I cant go out with them like I used to, bowling, camping, fishing, driving down to san fran for the hell of it just to walk around the pier and come home at 2AM. My life felt like it was just starting and now it feels like I dont have a life anymore. I sit at home because thats about all my body lets me do. I live with my mother but she has enough of her own problems going on to be concerned with mine, so I'm glad I found this forum, and to know I'm not the only one feeling this way.
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Lizette450
Posted Thursday, November 30, 2006 3:01 PM


 

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Hi Erin!
Welcome to the forum! I know excatly how you feel. I was diagonsed with JRA as a toddler and it is still active. I take numerous amounts of medication daily, not just for my arthritis but for other health problems as well. I am 24 years old and I recetnly had to quit my full time job as a daycare teacher because the pain was getting to be too much. So now I work as a supply a couple of times a week because that is how much I can handle. I hardly go out and if I do it is to go to the movies then come straight home. I don't have the enegry to stay out late at night and I constanlt have people make fun of me because they say I am an old lady who never wants to do anything. What they don't understand is I suffer with numerous health problems daily and my arthritis is a big part of my life, and I keep telling them I am not going to risk doing anything that will make my joints hurt or something else far worse.

What I am trying to say Erin is I am here for you. I understand what you are going through. If you ever need to talk my e-mail is:sexy_spice82@hotmail.com

Feel Better

Lizette
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Latasha117
Posted Thursday, November 30, 2006 10:27 PM


 

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OH MY GOD Erin,

I know exactly what you mean. I used to be able to go to school full time, work full time and volunteer and now I feel like an old hag because I have to perserve my energy just for school. I use to be able to go out and dance all night and have fun. I could walk anywhere I wanted. It really sucks now because I can't do any of that now. I still go to school full time and I have been working on getting a part time job because I can no longer do full time. I have have been on steroids for over a year now and I have gained 85 pounds and that sucks so bad. I take so many meds every day (including meds for depression and anxiety) but I take about 10 not 20. I inject methotrexate now but I have heen on enbrel and humira. Sorry for rattling but I love to chat with people who know how I feel and can understand what I go through on a daily basis. It's like you said they can say they understand but they really don't know......Thanks so much for listening and welcome.

Latasha
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hawaiiangrl85
Posted Saturday, December 02, 2006 3:40 PM


 

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Lizette - thanks for the response! I know exactly what you mean about not wanting to make anything worse. sometimes it feels like just plain walking makes my knees hurt even more! my knees now lock in place sometimes when i am walking or transitioning from sitting to standing. i think my grandma moved around better than i do LOL! i too have a few people who joke about me being old, but i also have sympathetic friends who try and understand i think both parties get irritated, we get irritated cuz they dont really get it and im not sure about ur friends, but i think some of my friends get irritated because they dont feel like we are much of friends anymore since we dont hang out as much and i say no just about everytime they ask me to go out. the calls now are at a minimun to go out places. i guess its for the best though? anyway my email is hawaiiangrl85@sbcglobal.net or u can catch me on myspace (if u have one) www.myspace.com/hawaiiangrl85 just send me a message lettin me know who u are and ill add ya to my friends and we can keep in touch. take care!
Erin
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hawaiiangrl85
Posted Saturday, December 02, 2006 3:49 PM


 

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Latasha - hey girl! thats awesome that ur still in school and doing part time work... i wish i could even do that! I havent been able to work since sept 21st 05 and ive just been at home since! my friends and family pushed me to apply to SSI and SDI i didnt believe i would get approved because of my age, but i applied anyway and 4 months later i was granted! it was a savior, i had no medical insurance and definitely needed the attention all the blood work and drs visits previous to it were paid for out of pocket and it was killing me! so hopefully u have good insurance, i dont know what i would do without mine. Dont be sorry about rattling I dont mind at all and i feel the same way as you... its nice to talk to people going through the same thing! Sorry about the extra weight gain =\ they didnt put me on steroids for that exact reason, im already on the fluffy side lol anyway if u feel like talking my email is hawaiiangrl85@sbcglobal.net or catch me on myspace... www.myspace.com/hawaiiangrl85 send me a message and let me know who ya are and ill add u to my friends and we can keep in touch. Hope u have a great day and take care!

Erin
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rockchicka
Posted Sunday, December 03, 2006 12:39 AM


 

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Hi hawaiiangirl, I also live in Hawaii on the island of Oahu. Im Brooke, 26 yrs old. I have JRA ever since I was born, so I've tried everything under the sun. I'm currently in college working on getting my counseling degree.
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hawaiiangrl85
Posted Monday, December 04, 2006 8:17 PM


 

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hey Brooke - I actually dont live in hawaii, i live in california... but im hawaiian. i am possibly moving to hawaii in january though, and will also be on oahu in kapolei i believe. sorry to hear nothing has worked out for you yet, but thats great that you're in school getting ur degree!
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Latasha117
Posted Thursday, December 07, 2006 5:44 PM


 

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Hey Erin,

So you are thinking of moving to Hawaii, that must be nice. I am thinking of relocating soon myself because Michigan is to cold and this weather makes my bones ache even more and it's a lot more difficult for me.

I have been wrestling with if I am trying to do too much with my illnesses or not becasue some days I just can't make appoints or work or anything and it makes me fell so bad. I don't want to apply for SSI or SDI but if I have to I will. I am not ready yet though. I do have good insurance but I have to pay a lot for it. I get it from my old employer but I can only do that for 18 months after employment. I am scared to be without insurance becasue I can't function without my medications Take Care and my regular address is williamslatasha@hotmail.com

Latasha
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Brittany15
Posted Thursday, December 21, 2006 8:34 PM


 

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hawaiiangrl85....i was diagnosed last year when i was 20 also and i was on the same meds as you but i have psoriatic arthritis that also comes along with the skin disorder psoriasis....i had been on enbrel for about 3 months and then stopped and completely dropped all my medication and even my doctor...i started seeing a homeopathic doctor and starting taking these natural remedies so when i did turn 21 and i have been able to go out whenever i want....not too much tho! just because alcohol isn't good for you anyways....but girl u are on alot of medication and i would be scared if i were u too just because thats alot....have u ever gone to see a homeopathic doctor?...u really should think about it...it is amazing...i don't have to worry about side effects or feeling sick from the medications....please reply back if your interested in this...natural healing is now the new way to go
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bala
Posted Wednesday, December 27, 2006 2:43 PM


 

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greetings from Mexico¡! oh my god girls, I feel a little better reading all this, there is someone who feels how I feel, who knows what I'm going through, it's funny, when someone ask me how old I am, I always say 26 going on 80, hi everyone, I'm barbara, I was diagnosed with JRA when i was 16, it's been hard, currently after a long time of going with an homeopathic doctor I decided that i needed a combination, so i started going with a regular doctor too, now I'm taking metrothexate, it's been a little better, but not enough to make wanna go party like i used too, I know I have great friends and when I don't wanna go out because I don't feel ok or I know it's gonna be cold outside, they stay with me o we go someplace warm and cozy, sometimes I feel that maybe it's too much for them, that they shouldn't be doing this and the should be partying without me, but they've always make me feel better by staying with me, but they can never understand why I cry for nothing and why sometimes moving my arm makes me scream, it's nice to find someone who does...
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Tasha
Posted Wednesday, December 27, 2006 7:49 PM


 

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I feel horrible!! I thought I had it bad, I pray you have nothing but healthy positive change for you. I just got on to this site today. I posted a message and can't find it anywhere and this is all new to me. I was diagnosed with Severe RA Dec 05 and and was 3 weeks pregnant and I just had a baby girl In sept. I haven't had the mental/physical ability tocontinue going to the gym and I need it. I need someone to motivate me to workout and understand when I am hurting and can't go. I also need to stop making excuses why I can't go to the gym. I just forsee the next days pain and it makes me not want to go. I am on 28 and used to be a tri-athlete. Now I don't even feel like an athlete!
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bala
Posted Friday, January 05, 2007 7:18 PM


 

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do you ever get the feeling that everything some how seems to be getting worse? I've been seriously depressed lately and I ¨can shake it off, my boyfriend dumped me...for another girl¡!, I haven't seen my friends, and it was christmas and I just wanted to cry and cry, I know everything will get better but I'm tired, very tired...
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ArrisColwell
Posted Thursday, January 18, 2007 11:22 PM


 

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Oh guys! I know it can seem bad. Okay, well it is bad sometimes. LoL It gets better eventually! I'm 23 and have had JRA since just about birth. So I hear ya! If there's one piece of advice I can offer to those of you who have had JRA for so long, it's this: Speak up. Every time I meet someone with JRA they talk about how they don't know if they should tell their doctor this, or mention that. This isn't something new to you, and most likely you know your disease better than your doctor! If you don't feel well, and your meds aren't working, don't be afraid to say something. People seem to be far too timid with their doctors now-a-days. I know this isn't probably the BEST place to be saying this, but if you are really depressed and confused and want more info, try joining as many forums as you can about RA. There is a WEALTH of knowledge to be had out there, and many many MANY people in your shoes!! (I personally belong to 4 message boards!)I try to watch and read things on this one, but it's a very difficult format for me. If anyone would like to know of some other boards, just ask!

Here's to pain free days!
Katie
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Cate54
Posted Thursday, June 26, 2008 3:44 AM


 

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My daughter is 19 and was diagnosed with systemic JIA @ 14. She was being looked at for the Olympic waterpolo team. She'd been a 'jock' since she was 4....soccer/swim/waterpolo @ 8. She was just released from a 10 month stay at Stanford. We now must live nearby just for daily clinic & treatments. It is awful for her. Yes, no cocktails for her. She now has Pulmonary Hypertension...I feel for you!
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Jaime A
Posted Sunday, January 18, 2009 11:18 PM


 

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Hi im Jaime im 13 and i feel like a 50 year old. Ive had a swollen knee for a year. I cant really walk up stairs and when ever i have to walk up stairs it takes 5 minutes. When i walk with my friends like at the mall i always have to ask them to slow down. And even in gym class i cant do anything. What should i do? 
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KnockoutKatie
Posted Monday, January 19, 2009 12:28 PM


 

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Jaime A (1/18/2009)
Hi im Jaime im 13 and i feel like a 50 year old. Ive had a swollen knee for a year. I cant really walk up stairs and when ever i have to walk up stairs it takes 5 minutes. When i walk with my friends like at the mall i always have to ask them to slow down. And even in gym class i cant do anything. What should i do? 

Well you should not be in gym, unless you feel healthy enough that's for sure. What have you taken for the swelling? Make sure to take NSAIDS.

Have you tried any drugs besides anti inflammatories like mtx? or biologics? I would talk to your rheumy about what drug would be best for you. Just taking an ibuprofen i snot going to help you enough, and it's a really short term fix.

I'm suprised your in gym. Are you on a 504 plan? It's good to be in shape when you have RA and be as healthy as possible but I remember during 7-8th grade my PE teachers were ruthless! So they may be pushing you way too hard. I would learn more about the 504 program and how it can really help you at school.

About your friends, I know how you feel. You just really need to focus on treating your JRA.

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Jaime A
Posted Monday, January 19, 2009 8:39 PM


 

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well i found out i had RA a month ago. And im only 13 so its so confussing what doctors say. so i dont know all the treatments. but im getting a shot tommrow so i probably wont have RA anymore. But thank you for the support
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Daniel Alicea-Munoz
Posted Wednesday, February 04, 2009 12:02 AM


 

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Last Login: Thursday, April 09, 2009 6:28 PM
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does 33 still count as a young adult? I am new to this site as well...I have had JRA since I was 16. Played 2 sports until then...denied it until early twenties, "self-medicated" for years, along with docs meds...I also know what it is like to feel old at a young age...can't remember what running full speed feels like...I haven't seen too many posts from mid-30's males, and I would like to get some insight from other males, no offense ladies...i am so looking forward to my 2nd foot surgery, 1st since 2001...more fusion=less mobility=less pain...totally worth it, it feels like i have been walking on a completely broken foot for a few months now--totally excruciating...well, if anyone needs any insight lemme know...
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stellabella126
Posted Thursday, March 05, 2009 9:36 PM


 

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Hi Daniel,

I've been looking for a male in his 30's that has had JRA. My husband is 31 and is recently going through a pretty bad flare up. He too has been through the denial phase, drug phase, docs meds, everything.  It's really hard. His Dr. told him his knee looked like the Grand Canyon. We've seen several doctors and have had a couple recommend a total knee replacement. He recently went completely off pain meds (he felt like he was becoming dependent on them and losing himself) which has significantly altered his quality of life.  He's had it since he was 4 but has pretty much lived a normal life with it until going off the pain meds. He's going to his RA Doctor next month to talk more about trying a DMARD again (without being on pain meds we think it might actually be beneficial for him) and to have cortisone shots in both knees. He has a follow up appt with an orthopedic surgeon who specializes in young adults with arthritis to discuss the knee replacement again. We're leaning towards it, but really want to talk to others who may have had one done. So, after my long winded post, my main questions to you are 1) Have you accepted that RA is part of your life and how? and 2) Have you had any surgeries?

You obviously don't have to answer, but any thoughts or suggestions you might have would be greatly appreicated.

Thank you

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Darren Bishop
Posted Sunday, March 08, 2009 8:06 PM


 

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Hey D,

I think i'm the guy your looking for. 31 and diagnose when I was 5 with JRA. Things had been okay right until college, but now i"m getting miserable looking for an out. I've done lots of self medicating but finally hit the brick wall. Considering a full knee replacement at an early age, which will create problems of its own.

Whats your story?

Darren
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