Arthritis Foundation Forum / Juvenile Arthritis / Young Adults

Parents just don't understand...

Stephanie Prieto — Thu, 18 Feb 2010 18:42:20 GMT

Hi Everyone!! :)I am a 23 year old female living with arthritis, and I feel that no one in my home really understands what I deal with on a daily basis. For example, I came home from work today with inflamed joints, and all I really wanted to do was relax. My parents do not understand this. They think that I am using it as an excuse to get out of doing housework. Just because I try to live my life as normal as possible, I feel that they forget that I am a young adult with a chronic illness. I try not to complain, so it is easy for them to forget what I go through. Can anyone relate? [b]Is there any information on the internet that I can give to my parents to remind them that rheumatoid arthritis is a very serious illness that takes a toll on my body on a daily basis??[/b]Thanks!!Stephanie

Discovering My History With Arthritis

Shelly Ayala — Thu, 19 Jan 2012 19:22:28 GMT

Looking back, it is obvious that I was one of the 10% of kids who have some form of Juvenile Arthritis. I remember complaining to my mom all the time that my hands and knees hurt. Eventually, we went to a doctor who ran some tests and did the whole "Does anyone have arthritis or autoimmune disease in your family?" I remember the doctor later saying that it wasn't RA but that since my grandmother had been diagnosed with Lupus several years ago, I may have it and that I'd have to have blood work done.Once a week my blood was drawn... positive, negative, negative, negative, positive. It was like a game of Go Fish. the doc said "We think it's Lupus...what do you want to do? There are treatments..."Even at age 11 I was a stubborn girl and I remember my grandmother telling me how hard it was to be on the steroids... I adamantly refused to take them. Over the next 5 years, I managed on Tylenol and even then did my best to avoid taking even that unless I was having a really bad day. One year in high school, it got particularly bad and I remember getting in a huge arguement with my father - he insisting I take the steriods and me refusing. I remember being frustrated that no one seemed to get why it was so important to me that I live the best I could without the use of medicine.I graduated high school and moved on to college, and by some bizarre turns, eventually ended up joining the military. I was determined to prove that nothing was going to prevent me from doing what wanted. I did not tell them on my medical history my rocky history with arthritis pain nor about my (in my opinion) weak diagnosis of Lupus for fear I would not be able to join. Two years into my service, the steady pain primarily in my hands became something I had become acustomed to ignoring. As my third year of active duty rolled around, I began having very tender, aching pain in my left elbow, somewhere I'd never had it before. It was warm to the touch, off and on, it hurt to touch in the joint and was an all around pain. I chose not to say anything about it (dumb I know) and pressed on. Six months later I rejoyced when the pain mysteriously went away. A year later the same thing occured this time in my right shoulder... again I said nothing. Ten months later it went away. Four years in and I began experiencing some moderate pain in the palm of my right foot and on the side of my left big toe. Hoping it would go away like the times before, I waited. A year later, the pain was twice as bad. I began having difficulties running or walking for long periods. After the second year passing the running portion of the yearly required physical training exam became impossible...I had failed a very important test required by my service. Upset, I finally went and saw a doctor. He seemed uninterested in my symptoms and after a general blood test, said I had probably over worked it and to rest it as much as possible. Frustrated and unimpressed with the military's medical system, I chose not to follow up after nearly killing myself to pass my retest and passing. A year later I had moved, and was still experiencing what was now severe pain in my right foot. It was now also in the heel of my foot (and felt very much like Achilles Tendonitis) I was having trouble walking and would be very stiff after simply sitting on the couch for an hour. Again I went to the doctor... At this point I was desperate enough to be very forthcoming about my history. I was referred to a Podiatrist who diagnosed me with Plantar Faciatis and recommened acupunture treatment....I'm sure it comes as no surprise, that it didn't work. Another 5 months passed with physical therapy with no results. One morning I woke up, rolled out of bed and promtly fell on my face. My feet were so stiff, I couldn't even walk. I went to the hospital where for the FIRST time they decided to do an x-ray. Nothing significant was found. 2 months later, I moved again across the country where it began again with new doctors. At this point I was determined to find out what was going on. After several MRI's and CATs showing significant inflammation and deteriating cartilagde they began Cortizone shot treatments... they helped for months at a time, but eventually the length of time the pain would be gone shrank until I way luck if it lasted a month. A Prednisone (sp?) regiment was next and the only thing it helped was by adding to my waistline.Again I failed a physical training test. Threatened with being forced to leave a job I had grown to love, I did everything I could to pass...and once again made it by the skin of my teeth. I was now diagnosed with Morton's Neuroma. The doctors apparently had no interest in my repeated attempts to tell them I had, had joint problems since childhood.Seven years into my service, it became apparent that there was no way I would be able to manage another 13 years and so, when my term came up at 8 years I regretfully left the military. Two weeks before my last day at work, I collapsed in my kitchen. I was unable to move for 5 hours before I could get to a phone to call for help. My cousin rushed me to the hospital at 3am with a severly herniated disc of the L5. I was imobilized for 2 weeks.I am now 28 years old and am now dealing with pain of the hands and feet, upper and lower back and as of 2 months ago, can now add pain of the left knee... but I'm still kickin' and have managed to get by with taking a Tylenol about once a week (for those bad days)I still have not been given a definitive diagnosis and I'm doubtful I ever will. But I've decided that I'm going to go as long as I can without perscription drugs... I figure I will need them more when I'm older and REALLY need them to work. I plan to continue being active and not let whatever ailment I have hinder my attempts. I hope anyone who reads this feels the same.

Diagnosed at 16.

Lauren Schwindt — Mon, 16 Jan 2012 03:41:41 GMT

Hi all!I was diagnosed with sero rheumatoid arthritis at 16, and have recently tested positive for the RA factor. I am now 18, and a college student living away from home. This positive test has inspired me to write a blog about my experience with ra at a young age, during college, and my reaction to the medications. (I have been on plaquenil, naproxen, methotrexate, and just started enbrel). I would love support and followers, and I hope that this blog can help many of you struggling with RA! I want it to become big enough that I can eventually sell t-shirts in order to fundraise for ra research companies. Please let me know what you think! http://collegejoints.blogspot.com/-Lauren-

How Managable Is Your Pain?

Shelly Ayala — Thu, 19 Jan 2012 20:12:07 GMT

I decided to do this poll to see how many people would choose the same as me.

undiagnosed?

sprayevo — Sat, 31 Dec 2011 19:03:36 GMT

Hey everyone, I'm new to the group trying to find out some info. I have joint pain pretty severe. I've been to a rheumatologist because my blood work said I tested positive for ANA. So my primary doctor thought I had an autoimmune disease. The rheumatologist said none of my blood work showed that I had arthritis and couldn't explain the joint pain and to just take motrin. Is it possible to have arthritis without testing positive for it!? Should I see another doctor?

teens with jra

~ashiemae~16~ — Sat, 17 Feb 2007 01:01:31 GMT

im 12 and my name is ashley and i have had jra seen 3 and im looking for people around my age to talk to anybuddy around my age out ther
u can countact me at ash_cat_girl@yahoo.com

Chronic Pain and Pills, Medical Marijuana

Craig1 — Thu, 14 Jan 2010 00:15:03 GMT

I'm sixteen, very active, just got back from my first varsity ski team race, i was diagnosed with Lyme in fourth grade, but the doctors and my parents say the symptoms started in first grade, i mostly ignored them until i turned into a sloth that sat on my couch or in my bed and slept all day due to pain fatigue headaches ect. Even with regular visits with my doctor he refused to acknowledge my symptoms even when parents asked about doing test or something. any way the antibiotics came to late and while i'm grateful that i no longer suffer the constant headaches and stomachaches the pain never went away. and worse then that, its gotten worse. I usually compare the pain to a ATV accident i had a few years back, racing my dad in Texas, at night(yeah i know not a good idea) i lost control crashed and was thrown from my seat onto the ground. Immediately over the roar of the engine i heard a sickening snap looked down at my arm visibly snapped, later when they got it reset they had to rotate it, pull it out so my wrist wasnt on my forearm then push it back in, but when i got up it felt like, well it hurt like a ##### but comparatively to my everyday pain it wasn't anything. I hate telling this story and trying to explain it to other people but it feels like the people here understand. The same reason i don't like telling people this story is the same reason it took so long for a diagnois, i don't like complaining, im an athlete i don't like when i see people complain, cause in comparassin to what other people have it is nothing. I never say compared to me cause i always feel like im not the severe case, but i dont even know anymore, when you grow up with something, you get used to it, you never forget but you learn not to focus on it. But i also don't like calling myself tough, because i guess i don't see myself as the model of endurace. All i can say is i've been to the emergency room a lot for tramua based stuff, never had to get surgery, yet :), and i would rather have every injury ive ever had forever then the pain of everyday. And its getting worse. My parents have kinda given up on me, but its there fault they did, they've tried doctors from all over trying to make it go away and it hasn't worked, infectious disease, orthopedic, i dont even know the rest, but its considerable. Then when that didn't work we tried people who weren't doctors nutritionists, acupuncturists , massage, yoga, a lot of names in Chinese that i can't hope to spell much less pronounce. And my main feeling i got from all these attempts at fixing me is maybe my parents had the wrong motives going about this. Personaly roughly seven years of only an increase of pain is long enough for me to stop sitting around and just try to improve my quality of life. I've looked into a lot of supplements on this site, a few i already have some I've found at local pharmacies. But now i just want a pain free day, the last time i truly remember that i was on Vicodin, and opiates kinda worry me but freak out my parents, but if thats all i have to look forward too, and if the side affects, including long term ones a minimal and i can function normally with them... wow it seems like all those things are exactly what opiates do. And recently I've been interested in marijuana as a treatment. I've done a lot of research, before hand and am reasonably sure of the risks, but i was surprised by the mixed message i've gotten. I live in New Jersey and we just passed the law allowing medical marijuana in our state. I don't know the exsact law but what ive gotten is it will be allowed for chronic diseases, and severe chronic pain. I used to say six or seven when asked by doctors wanted me to rank my pain, but now its is definitely an eight, of course humans would try to quantify something unquantifiable. anyway, i;m leaving space on the chart cause today is a good day, and 10 is something when you should intimidately be in the hospital. This is one of the most annoying things for me, ranking it, feeling like i have to prove im in pain and that its bad, i know that so many people have it so much worse, but i know that right now for me, its becoming unbearable. Im looking into doctors now that i feel like its degenerating, worried about RA cause of the direct link, but i don't have inflammation and haven't for a long time so i think im good. Sorry guys for the length and if you made it this far i thank you, i should probably post more often so i dont have to go on such a long rant each time. Sorry if its confusing or weird, tried to maintain my unadulterated thought process so you guys can know where im coming from. When ever i post on here i always feel so much better. Any stories or advice would be great, life story or their experience with meds, and cannabis

Trapped in my own body

Emkingxx — Wed, 30 Jun 2010 20:50:53 GMT

I'm 17 years old, and although I have recently been diagnosed with rheumatoid arthritis, I have been in pain for quite some time. In short, I feel trapped in my body. It takes me 10 minutes to get down my stairs some days. My right wrist and fingers constantly swell up, so I have a lot of trouble writing (which is something I really enjoy). Rheumatoid arthritis has attacked the joint in my larynx responsible for the change in register in my voice. I was once a singer. Not only has my mobility decreased, and life has gotten harder and painful, but now my primary source of joy has been taken away because I can no longer sing. My hips and legs hurt to an extent that all I do is lay in bed or sit on the couch all day, usually. I know that I should move around, but it hurts too much to do anything else. My mom says I should push myself, but she doesn't understand the pain and frustration.I can't do all the things normal 17 year olds do. I'm going to college 5 hours away from home in two months, and I'm supposed to go to Quebec for 4 weeks following my freshman year. My mom is having a heartattack and doesn't want me to go. I hide it, but I'm just as scared as she is. I don't know if I'm going to make it. Really, how am I going to? Most days, already, I just feel like giving up. Everything is going to hurt, so why bother? The pain that I suffer has made me depressed 24/7. Whenever I tell anyone I am depressed, they ask why. They say I have a long life ahead of me, and I shouldn't be depressed because my future is so promising. But the way I see it, my future holds a lifetime of pain. Every day now feels like a struggle, even at my young age. If I'm like this now, what will I be like when I'm 30? What about having kids? How am I going to raise kids if I can't even chase them around or play with them? Will I even make it to 50 without a wheelchair? I know there are treatments, but nothing has worked. In combination with having Crohn's disease and juvenile myoclonic epilepsy, the future feels so hopeless. Thank you for reading. It feels good to post somewhere where I know others share my strife.

I have fibromyalgia and i cant find any support

Heather Seager — Fri, 04 Nov 2011 18:08:05 GMT

Hi,my name is heather, i have fibromyalgia and i cant find any suppport. When i cant participate in activitys no-one understands why and they think im faking it. Does anyone have any advice? thanks :)

PE, Teachers, Friends Dont Get IT!!

Rachael Taylor — Sat, 14 Aug 2010 07:15:22 GMT

Sport teachers think im just a fat little girl who doesnt want to do sport and invents an ilness even though i have letters from Rhuematologists and Doctors and im only fat because of the steriods im on. I miss alot of school and my teachers just think im lazy. Friends get angry when i turn down their offers for nights out ect because of the pain and i also take chemo drugs saturday night. They think im making up the pain so as to miss out on the first few minutes of class when i walk slowly at school. They dont understand, i cant tell them, they dont get it, i try but they dont understand the pain im in.

Anyone Here Diagnosed with Sjogren's as a Kid?

McGirk — Mon, 21 Jun 2010 20:27:12 GMT

[font=Verdana][size=1] My 14 yr. old daughter was just diagnosed with Primary Sjogren's, Vitamin D level--15, and tested positive for Ro and La Antibodies. Was anyone here diagnosed with Sjogren's as a kid? Her pediatric rheumatologist said it's extremely rare. From what I understand, it can cause few problems or actually be life-threatening later on.Any info from someone who developed this as a child would be greatly appreciated![/size][/font]

Side effects of methatroxate?

Chloe Peterson — Fri, 28 Oct 2011 10:50:43 GMT

I just started taking methatroxate and I have become very sick while taking.Do the side effects ever wear off or does it stay like that? Thanks!

bow legs.

Chloe Peterson — Fri, 28 Oct 2011 10:49:17 GMT

I have noticed recently that my legs have been turning inward.Is there anything I should do to prevent this?

Sudden Increase in Severity?

sugar_cube — Mon, 03 Oct 2011 22:04:02 GMT

Hi everyone. When I was 22, I was diagnosed with osteoarthritis in my hips. The x-ray concluded that there was "stable degenerative change." My doctor, disgusted by my recent hypochondria, assured me that this was nothing. I had been taking martial arts at the time, and she and my physical therapist blamed it on that. I'm 26 now. Haven't done any martial arts since then (or any other exercise, I confess, aside from walking up many stairs daily). My hips have mostly behaved themselves. But over the summer, I started noticing that after sitting for a long time, my legs would hurt a lot. Not just my hips, either. And for the past few weeks, my leg joints have given me some bad pain in the morning, and after sitting for awhile, when lugging stuff up my various stairs, etc. This morning on my way to the bus, my legs suddenly hurt so bad, and got that "locked" feeling in the hip joints, that it became quite difficult to walk. I limped to the bus, and the pain went away after sitting for awhile. This sort of thing has happened to me several times this year. Anyway...should I be worried? Is this just typical arthritis? I don't understand why I have arthritis already, or why it has gotten worse. Is it the weather? It's gotten colder around here, but not by that much. I am a hypochondriac, yes, and this has the wheels in my head spinning. I very recently had blood work done, which declared me healthy as a horse, though my thyroid was almost too low. (It has been under the normal value in the past, but not enough to warrant further investigation, apparently.) Any advice or info would be much appreciated!

I'm Getting Sick With Methotrexate

Elizabeth M. — Sun, 09 Oct 2011 11:03:10 GMT

I'm 15 and have been on Methotrexate off and on for two years. I started it on an injection but I stopped after 9 months after several complaints my rhuemy ignored such as a lot of fatigue and irregular periods and headaches. Not only that, I couldn't take the injections anymore: I used to call it 'getting shot with acid' because it was yellow.Now I take it again but in pill form (7.5 mg) once a week (Sunday) with something before hand to keep from the nauseous feelings. However I can't physically take those either. The pill before makes my stomach feel awful and when I take the real stuff I keep myself from gagging it up. I take them two at a time, and last week after taking the first two, as I tried to swallow the next I threw up and started crying because I know I need to take them. Does anyone have any suggestions to make it easier? Also, does anyone else get acne taking it? And is anyone on a higher dose than me? I might be getting bumped up soon and I'm wondering if there are MORE side effects.Also, just a bit off topic, I feel guilty writing this. I hear of people with terrible arthritis and flare ups every month taking 1,000,000 drugs and stuff but I don't have any of that yet I'm complaining. My arthritis isn't offically diagnosed, and it's in my hips, knees, ankles and my back is affected but we don't think it's the arthritis in the back. I only take that methotrexate too. So, in advance, sorry if I offended anyone with it much worse than me.

Boyfriend with OA

Casie Brown — Thu, 10 Mar 2011 01:11:19 GMT

I'm currently in a long distance relationship with my 21-year-old boyfriend (I'm 23), and he's virtually bed-ridden due to severe osteoarthritis. He lives alone and has to fend for himself when it comes to cooking and daily tasks, so his depression tends to set in rather quickly.I don't have arthritis, so I can't imagine the pain he's in, especially when he begins to cry on the phone. He is the strongest person I've ever known and something is seriously wrong when he breaks down and cries.Does anyone have any suggestions on what I can do to help him? His doctors are one step up from complete idiots and he no longer has insurance coverage for physical therapy. He's on disability now because he can't work. I just don't know what to do for him anymore. Please help!

13 year old daughter having a hard time how can I help?

Annette1 — Thu, 07 Jan 2010 02:55:37 GMT

My daughter is 13 and has JIA. It started in her knee then moved to the other knee. Now it's in her ankles and right elbow also. She just turned 13 and the normal teenage mood changes are happening, but along with that she is really struggling with why all the health issues are happening to her and blaming herself. She also has fatty liver disease and Hashimoto's disease. She had joint injections in her ankles the end of September and was doing well. She really wanted to play basketball in school so we let her since it was only for 6 weeks. Now she is in the middle of a fairly bad flair in her ankles. The knees are hurting also but not as bad. Tonight driving home she said it's her fault she has JIA and the other health issues,she should have eaten better....etc. I assured her that none of this was any way her fault and it was just the hand she was dealt, that everyone is fighting a battle of one kind or another. She was so sad and it just breaks my heart. The problem is she's pulling away a little from me. I've offered to send her to a counselor but I'm just wondering if anyone else could give us some help. As her Mom I want to say all the right things and just magically make this all go away, but I can't. I want her to know she is strong but if she has a bad day she can always come to me. How did all of you handle your emotions as a teenager or how did your child handle it. Thanks for any help you can offer!

Newly Diagnosed - Scared

Janet Alaniz — Wed, 31 Aug 2011 04:12:08 GMT

I've recently been diagnosed with having RA, which is all shocking news to me. In the past two months my body has gone through extreme stress and tear, from emergency oral surgery to hospitalized for the removal of my gallbladder. In fact the week I finished my antibotics for my oral surgery, I was put into the hospital for the gallbladder. I've been out of the hospital, and back to moving around, and into my second week back to work, when i took on the side effects of RA. It started in one ankle, completely giving out on me, to my hands, and both my ankles. I couldn't even walk, or grab, or hold anything and spreading to my knees. I couldn't even manage to hold down the button to roll my window down. I'm not saying i'm the most physically fit person, but I stay active, so to be brought down without notice is scarying me. Everything i've read of people and their personal experiences has given me more information on what to expect than the doctors I've talked to. As of now i'm on prednisone and vicodin, temporarily. The side effects have been fatigue, I immediately fall asleep after taking it, I'm emotional, which probably wouldn't factor in except I find myself in a flow of tears just thinking about it all. It's only been a week, and although I can now walk, I can't really return to my daily life without feeling like I need to sit, or need a nap, or wonder if I take one more step if my ankles will give out on me again.Since there is no known cure, am I suppose to live my life wondering when the next time this disease will break me down?

Blogspot Anyone?

Samantha Hill — Tue, 23 Aug 2011 03:11:00 GMT

Hello all! I have started a blog to connect with younger people battle Arthritis.[url=blogspot.com/youngandbrittle]blogspot.com/youngandbrittle[/url]Feel free to follow and interact with me!

Comfortable shoes

Carlee Colt — Tue, 02 Aug 2011 10:40:29 GMT

I seriously want a great looking pair of shoes that will not bother my foot pain, but I don't want my foot pain to choose my shoes! My mom and I both have the same foot issues and she always seems to find shoes that don't look like arthritis shoes! Last week she told me she was looking at a pair of [url=http://www.shoestores.com/munro-american]Munro American[/url] shoes. Does anyone have any reviews about the comfort level?

Uneven feet?

Smitty — Sat, 30 Jul 2011 12:26:37 GMT

I was wondering if anyone out there would be interested in a couple pair of brand new shoes that are two different sizes for each pair. Because I grew up with JRA my feet did not grow at the same rate, hence my left foot is a 7.5 and the right foot is a 6. If you have the opposite sizes to my feet (left 6 and right 7.5) and you are female then I'd be happy to send you two pair of dress shoes. Any takers?

Basal skin cancer creams create RA problems?

Juli226 — Sun, 15 May 2011 11:05:42 GMT

I am 42 and was diagnosed with JRA when I was 2. My disease isn't very active, although I have a lot of joint damage and have had numerous surgeries. My dermatologist prescribed zyclara cream for a spot of basal cell superficial skin cancer on my arm. Long story short--all my docs are saying, yes, the packet says to tell your doc if you have RA, and says the drug hasn't been tested on that population and says to use caution in using on people with RA, but we've found no problems so you can use it. I can't make an educated decision whether to use the cream based upon these answers and so I simply had them cut and burn the spot, which was my other option.I'd like to use the cream because there is less scarring and it also locates other cancer spots I might not otherwise find. Has anyone with RA or other auto-immune disease used zyclara (or aldara--its the same drug--imiquimod is the name of the active drug that they both contain)? If so, what discussions did you have with your docs regarding the cautionary language about use of imiquimod when you have an auto-immune disease? What was your experience in using the cream? I don't want to risk waking up my active disease again. Thanks!

Blog About Living With RA

Lyda — Thu, 24 Mar 2011 00:16:02 GMT

Hi all,I posted this on the Parents and Parenting forum but wanted to post here as well, so sorry for the double post! I recently started a blog ( http://lydaclark.blogspot.com ) about my life and living with RA. I was diagnosed when I was 12 years old and now I'm in my mid-twenties. I decided to do a blog when I met a young girl (11y/o) who was just diagnosed and I was helping her and her family get through the new transition into living with RA. I found that what helped her most was to see someone who had gone through all the things she was going through and is living a perfectly normal, happy life. This blog talks about my troubles with RA, my diet changes (just started an elimination diet), and a lot of other things that aren't about RA in particular. It's a big mix of it all.My hope is that this blog might help other young people out there to have someone to connect to. I LOVE feedback and hearing from people who understand what I'm going through.If you have a child, know a child, or are a young person with RA, I would love to hear what you think about it. Take care, all!http://lydaclark.blogspot.com

Ask the Expert!

Adrienne - KGAT Editor — Thu, 27 Jan 2011 09:14:03 GMT

Hi everyone. I'm the managing editor of [i]Kids Get Arthritis Too[/i] newsletter. On the back page of each issue, we have a section called Ask the Expert. I usually get my ideas for these questions from this forum. What's on your mind? What is most pressing to you right now related to your JRA or your child's arthritis? What would YOU like to ask an expert about?

Young Adults on Humira?

MissMel — Mon, 06 Sep 2010 00:00:26 GMT

Hey there! I am 26 and have been on Enbrel since I was 14 (I think) and have recently stopped seeing results so am switching to Humira. Where the side affects have me a little worried, I was just wondering if there was anyone on here in my age range that has been helped by this same switch. Also, what side affects you experienced. I know they vary with each person (as well as results), I just need some reassurance that I'm doing a good thing and will hopefully see some results soon.

JRA - 6 yrs later, she's climbing to the roof of Africa

Mom4 — Tue, 14 Dec 2010 01:33:46 GMT

Hi Everyone,I know it's been a few years since I last posted an update on my daughterRachel. Many of you who are currently on this message board, may not know herstory (the old posts are gone) so I'll append it to this update.2004 was the year that my 14yo daughter's dreams were crushed by JRA. Shestarted high school unable to walk up a flight of stairs or carry a textbook toclass. The prognosis from traditional docs was grim (to say the least). Then wefound AP and she really and truly started on her journey back.2010 was the year that my 20yo college junior decided she wasn't content withstudying environmental issues at her comfortable campus. Instead, she packed upand went to East Africa where, for 4 months, she's conducted field research (inthe bush with the wildlife, bugs & very primitive living) in conditions thatpushed the fittest person to their limits, and often beyond. She has hikedcountless miles, carried her weight in gear, conducted a vegetation/erosionsurvey that required patience & physical endurance, and even tagged a lion ortwo. The students finally completed work that has promise to make survivalpossible for many people. It would seem like this would be the ending to thispart of her story, but...It started with her realization that she wasn't going to be back to do theArthritis Jingle Bell Run this year. Then, she decided to organize a benefitevent to support children's health issues in her host countries instead. So thatis when 'Climbing for a Cause' was born to support UNICEF's children's health inTanzania/Kenya. Yesterday morning, she and 6 teammates began climbing to the'Roof of Africa'. It's 19,231ft to the summit of Mt. Kilimanjaro, the highestmountain in Africa & 4th highest of the 'seven summits'. They are climbing theMachame route (the shortest but also most challenging). Starting into therainforest this morning and will climb to 12,000ft by tomorrow. Altitudesickness is their biggest challenge, followed by wind/ice/snow/extreme cold nearthe summit (snakes & lions don't phase them anymore). The statistics are notgood - a large percentage of climbers cannot adapt to the extreme altitude. Lastweek, Martina Navratilova had to be carried down the mountain & a third of thatteam of 27 athletes didn't make the summit. Shortly before starting the climbyesterday, Rachel posted this status to her Facebook:"everyone has mountains to climb, sometimes those mountains are in ourmind...true triumph is about trying whatever the result" going to the roof ofafrica tomorrow. -15 at the top and all kinds of toughness going up.6 years ago, a flight of steps and walking down the hall between classes was asdaunting as the 19,231ft climb and 100km trek of Kilimanjaro. Rachel's climbingto benefit UNICEF this week but she says that her message is dedicated to all ofyou. Every step of the climb will be for the fight against JRA/RA. She continuesher fight everyday & has been on AP the whole way. Please keep them in yourthoughts and prayers this week.btw - she no longer has rf+ of elevated esr and it's been normal for several yearsFrom July 15, 2006: JRA - smiles on her journey backI thought this update might give a boost to everyone on a road back(especially Cheryl's Jess who is on a road very much like Rachel).So it was 2004 and she was at her first Olympic trials (though at14yrs probably not a real contender) and the pain in her feet, wristsand hands were becoming an ever bigger problem. Then July 2004 at USNationals, she took to crutches between competitions. A worldreknowned pediatric rheumatology center said she was no longer anathlete and would be in a wheelchair by summer 2005. She started highschool burdened with a grim prognosis and with directions to scaledown her dreams and goals... not just athletic ones but academic,social, everyday life. We were also told to plan on attending theannual AJOA conferences.We found the Road Back in Dec 2004 and started a remarkable journey.Simple things like the ability to walk between classes and take thestairs instead of a handicapped elevator returned by year end. Shetook the toughest classes and made A's. Had a very busy life with manyextracurriculars. By April 2005, she had not only returned tocompetition but had requalified for nationals. She was definitely onthe road back. We did not feel the need to go to the AJOA in 2005.I posted 'JRA and AP a year later' in Jan 2006. That was when werealized that this must be a remission. Since then, the road has onlybecome smoother. She doesn't take Minocin 200mg everyday but now takesit every other day. She doesn't hurt if NSAIDs are skipped a day ortwo. But since she's in continuous athletic training, she is carefulto prevent and treat any signs of inflammation from injury or overuse.She is ever so careful about her diet, supplements and vitamins,exercise and training. The cartilage in the damaged joints hasregenerated, range of motion has returned to normal, no more pain.(But she can still predict an approaching storm better than theWeather channel with her joints!)So she boarded a plane for Atlanta today and we noted that the AJOAconference is being held there this week. I wondered how many JRA kidsshe might walk past in baggage claim. But this was a day for smilesinstead of a time to attend a conference & learn how to manage alifetime of disability. Because as the AJOA conference winds down,across town another group is gearing up. It's time to train for theworld championships with the Olympic coach, 2004 medalists andnational team members from around the world. Now, the dream for 2008may be impossible and even meeting Jess & Cheryl at the 2012 games avery long shot, but for today, right now, there's one happy kid who'sjourney has taken her to a place where she's on par with the best.She's an athlete again.From July 28, 2006: JRA - Doctor said 'miracle'Hi Everyone,A couple of weeks ago I posted our update in 'JRA - smiles on herjourney back'. Rach made the trip to Atlanta (not to attend thejuvenile arthritis conference) but to 'endure' intensive athletictraining (aka. world championship bootcamp).So did she survive? Amazingly, yes! The first few days I heard fromher several times a day... it's awful!...I'll never survive!... myfeet are killing me! Do you think I'm flaring?... can I just quit?...She didn't quit! And when I didn't hear back from her for a few moredays, I worried.But then she finally called late one night. She was hiking back to thedorms with teammates having just walked miles to a store for midnightsnacks. Sorry she hadn't called. Up at 6am and nonstop training untildinner at 7pm. The food is terrible. Evenings they have a few hours togo places (by foot). I ask - What about your plantar fascitis? Whatabout your knee, fingers, wrist, elbows? What's flaring?! Oh, I feelfine now. A few days into the most physically demanding thing she evertried, all the aches & pains went away. Something about getting usedto the training & stretching everything out... No pain. No swelling.No JRA flares. She was doing fingertip pushups again. Walking 5-6miles a night for fun after a grueling day of practice.She said the experience had helped her make peace with her Olympicdream and the past disappointments from JRA's setbacks. She trainedwith the best athletes and coaches in the world. She geared upeveryday next to her idol (an Olympic medalist) & best yet, when shescored the win in a hotly contested dodgeball tournament her Olympicidol led the rest of the team in a rush to high five & jump on her ina screaming heap. One day she realized that the Russian national coachwas giving her extra attention, acknowledging her performance and evenliked her. She said that she discovered that she was finally 'back'.Able to compete without a JRA handicap. The decision to pursue theOlympics or not is no longer determined by her disease. It will be thenormal questions of what sacrifices she is willing to make & how muchof her life gets put on hold to get to 2012. She's not ready to makethat decision yet. For now, she'll get ready for this year'scompetition & look forward to college recruiting next.It just so happens that Rach's lifelong pediatrician is my closefriend (& her sister's godmother). She is also past president of amedical examiner's board, the longest sitting member on the sameboard, is on the board of 2 (or 3) medical schools, sits on this, that& the other committees, is overall a very influential physician (metwith the governor one night, then the next day was interviewing thecandidate for medical director of the group of 3 children's hospitalsfor a certain city). She doesn't profess to know rheumatology butafter treating kids in one of the busiest practices I know of for 30years, I think she has seen her share of JRA.Rach wanted to drop in for a surprise visit before coming home. Shewas shocked! Overwhelmed maybe? Taken aback? She was so happy (tearsin her eyes happy)! She said over & over "It's a miracle! You're mymiracle child! Who would ever believe it but you're living proof!" Shelooked at the thumb that had regrown cartilage & healed & shook herhead & said again that she was all the evidence she needed. We talkedsome about AP & Dr. McPherson Brown (who she already knew about) & theprobable relationship of the glucosamine, chondroitin, MSM, etc to thenew cartilage growth. She said Rach's recovery was beyond anything shehad ever thought possible. She had prayed everyday for Rach, worriedand wondered how long she'd be able to walk, knew the prognosis wasbad. She acknowledged that the traditional treatment options aredangerous and that minocycline is safe & well, just so simple. Sheasked for more info on AP, current protocols, studies, doctors whoknow it, case histories.I asked her why so many docs are still hostile to alternatives in theface of mounting evidence in their favor. She said that a good doctorshould be open to safer, alternative treatments and be grateful to seeliving proof of its benefit. Sad to say, she knows way too manycolleagues who are blind on that point. Too many unduly influenced bybig pharma marketing & incentives, grants or just fear of deviatingfrom the status quo. There's hope that there will be change &encouraged by the new medical specialty in Complementary & AlternativeMedicine at a few medical schools. But she has seen Rach and she's allthe proof she needs to believe there's hope for a better treatment forJRA.I know some of you have asked that I post Rach's story moreprominently on the site. I've talked to her about it and she's notquite ready to 'go public' but is getting there. She has kept her JRAsecret from most of the people in her sport. She doesn't want thedisease to have power over her in that refuge. Only her personal coachand a teammate/doc knows the details. As her confidence in beating thedisease growing, she's getting closer to putting a face on her story.

Anyone with uveitis?

RheaMarie2632 — Sat, 11 Sep 2010 22:15:09 GMT

Hello everyone. my name is Andrea. i am 28 years old and I was diagnosed with JRA when I was 18 months. Also diagnosed at the time was uveitis. I am in remission now with the uveitis however I am wondering what it feels like. When i had it as a child I did not have the usual symptoms. The reason my eyes were checked was because my parents realized I couldn't see. anything that you can tell me will be a huge help. Thank you. And also you can contact me anytime to ask me questions. I have lived with the disease my whole life, perhaps I can be a help to you also. Thank you again.~Andrea

crappy insurance, so much pain...anyone know anything about synovectomy???

ashley leuthe — Wed, 01 Sep 2010 18:19:44 GMT

i am 25, diagnosed @ age 2 w jra....first pauciauticular, later polyarticular. i guess it went into "remission" when i was a kid, but it came back really bad...with a giant giant knee, when i was 10. it was around then, and became the only time, when we started treating my jra pretty aggressively. i had very minimal flares as a teen...maybe once a year, where my knee would get super swollen. (it's typically my knee that has the bad flares...but i have ra technically in nearly every joint) ...anyways...once a year was tolerable. then i had a baby...when i was 20...and started noticing my ra acting up a little more. not in the extent of a huge swollen knee flare...but more aches and pains....stiffiness....you know the drill...i had another baby two years later...and since then, the last three years have been hell. i have the worst insurance, and for a while i didnt have any insurance. i would bum..pain killers, and nsaids...of friends and family. i am having "huge swollen knee" flares..weekly. it's just ridiculous at this point. i currently dont have a rheumatologist @ this point....i have an appt in two days w a regular physician. ( tryin to get a referral) previously, when i've had a dr. i have tried every meds....nsaid, methatrexate, have had my knee drained twice..and my wrist/knee injected w steriod twice. it's so bad recently....that i went to the er...because i had no dr. office to visit...they drained it, didnt want to do cortizone, and got a presciption ( thank god!) for indocin and vicodin...literally not 4 days later...it was just as swollen again. just as much fluid.bleh....i went on and delt with it being that way for about a week. then for about a week it was good, i was actually impressed...and then today i wake up and it is huge. i can not take this anymore. it is sooo painful i can even describe with words. i have no medicine and the pain is allllll i can think about....which it what has led me here. i've been on the computer all day, with my leg proped up...and i stumbbled across info on "synovectomy" i've never hear of this before...but from what i've read it sound like i would be a good canidate. i just cannot seem to keep my knee from being the size of a melon. i have two kids i have to take care of...and i barely can. i can barely walk. and the only thing i have been able to do...it take pain meds like skittles....just so i am not crying all day. i hate it. nothing makes the knee not the size of a melon...i dont know what to do??? any advice???

Video of young Adults talking about the JA Conference

AF Dude — Thu, 01 Jul 2010 11:27:54 GMT

Young adults affected by arthritis talk about why the JA Conference is important to them.[url=http://www.facebook.com/Arthritis.org#!/video/video.php?v=403670477959&ref=mf]The JA Conference Young Adult[/url]

SUMMERTIME SOCIAL for children, teens and adults!!! Louisville, KY

Donna341 — Wed, 23 Jun 2010 12:27:45 GMT

You’re Invited The Juvenile Arthritis Alliance & Arthritis Introspective SUMMERTIME SOCIAL for children, teens and adults!!!Fun FriendsIce Cream Swimming (weather permitting)July 18, 2010 1:00PM - 5:00PMCountry Club Estates Clubhouse3040 Country Club LaneJeffersonville, INDETAILS/ RSVP: 502-409-4841Ajaoky@aol.com

why so much pain

amh125 — Sun, 17 Dec 2006 21:29:18 GMT

i am 12 and i have been sufring sen 3 and i cant hold on anymore whit the pain i just want to cry but i dont want to ask my about surge but my elbows and Knees and sholders and neck,hands and wrist cant take it anymore what should i do so wouried becuas i cant move very much and i have to us the elaverter at school and i miss alot of school becuas the pain is killing my joints jra i cant take it anymore and i kep going to drs and the hospilt but they dont do much for the pain and teacher want me to tell them when im hurting but i dont like to complan anyways what can they do NEED HELP PLZ

RA & Birth Control

Anna Guimaraes — Sat, 12 Sep 2009 22:04:20 GMT

Hi there, everyone. I'm pretty new to the place and have been searching for a few days for an answer to my question and haven't been able to find anything, so hopefully you guys will be able to give me a hand.

I have Juvenile Rheumatoid Arthritis, have had had since I was 8 (I'm 20 now) and I was doing quite well. After going through several courses of treatment, right now the only thing I'm on is Nimesulide for handling the pain and the ocasional very small dose of Prednisone for when things get a bit too rough - luckily, it rarely ever happens anymore. (:

However, lately my little JRA buddy has been acting up quite severely. I noticed a huge increase on the pain ever since I started taking birth controls pills (a very low-dose combined oral pill). My doctors had cleared me to use it and it isn't said to have any effect on RA, but I fear it might.

Of course, we all know that stress and emotions all have a great impact on RA, so it's plausible that possible moodswings (a very common side-effect of the pill) could be responsible for some pain. And I should say that I've only been taking them for a month and most symptoms are said to clear up by the third month, but I honestly don't know if I can (or should!) handle 2 more months of this amount of pain again, after having been doing so well for so long.

So my question for you guys is
Have you ever used contraceptive pills and what was you experience with it? Did it have an effect on your RA or none whatsoever?

I find there is rarely anything about this on textbooks or elsewhere, so we should rely on each others experiences. This may be taboo for some, but it is something that should be addressed. It is as relevant to quality of life as anything else, after all.

Thank you for your help in advance! I look forward to any replies!

The Spoon Theory (describing being sick)

Florida lowlands — Wed, 27 Dec 2006 12:10:46 GMT

The Spoon Theory
My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of "spoons". But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started yet. I’ve wanted more "spoons" for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said " No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can't take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too." I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her a spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s "spoons", but just think how hard tomorrow will be with less "spoons". I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on "spoons", because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons".

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my "spoons".

© 2003 by Christine Miserandino Butyoudontlooksick.com

Diagnosed with Juvenile Rhymatoid Atheritis at 18

Emma_Louise — Sat, 06 Mar 2010 16:48:58 GMT

Hi, im Emma from the uk and this is my first time visiting this website. I googled juvenile Atheritis and came accross this site and found it comforting to read posts by others in similar situations as myself. Im 18 and have been diagnosed with atheritis, i also have a bakers cyst in both legs , one ruptured.i feel so down, as much as family, friends and my boyfriend are supportive and helpful they dont undertand my illness, no-ones does.I do beauty therapy at college and i am in my last year, i find it difficult to complete my treatments and fear i will never be able to have a succesful career in beauty therapy, and i had such high hopes for myself to own my own salon. My course tutor isnt understanding about me having days off and some of the girls in my class acuse me of slacking and being lazy in salon sesions , they dont understand im in constant pain and the smallest things are such a big task for me now.Im in pain all of the time, on a morning i can barely walk im stiff until around dinner time, and i start to feel a little better after dosing up on pain killers , but after college i am exhaused and just want to go to bed. i cannot go out with my friends and do usual things that an 18 year old should be able to do , i recently went on a night out for my friends birthday and ended up going home early in tears i was in that much pain.I feel 80 years old not 18 , i just want to stay in all the time and i just want to sleep, atheritis is ruining my life and i keep randomly bursting into tears , i am so unhappy.Does anyone else have my condition ? i would like to talk :)

Young Adult Group Activity

AF Dude — Tue, 23 Mar 2010 11:55:24 GMT

[size=2]Hi All,Check out the latest Activity in the Young Adult Group. Great blog post from Isabel.[url=http://community.arthritis.org/Groups/Young_Adults]http://community.arthritis.org/Groups/Young_Adults[/url][/size]

Enbrel and menstrual cramps

Janell DiCarlo — Wed, 27 Jan 2010 12:24:25 GMT

Just wanted to know if anyone experienced more difficulty with their menstrual cycle once they started Enbrel? My daughter is experiencing severe cramping that lasts for days. I don't know if it related to any of her medication for RA.

NEW TO THE WEBSITE I have [JRA] & im 17 looking for other teens That i can relate with

Britt'Any-From The B.A.Y — Wed, 13 Jan 2010 15:52:53 GMT

ADD MY BLOG!!:D

want ti know if enyone speak spanish

rosa vargas — Fri, 22 Jan 2010 13:52:40 GMT

hola mi nombre es rosa tengo 26 anos y hace 7 semanas empeze con muchos simtomas muy paresidos alos del artritis,pero aun nose si tenga esta enfermermedad ya k mi doctor no esta seguro, me mando con un reumatologo pero no tengo dinero para ir ya k no tengo seguro medico y es carisimo,ya no estoy trrabajando no puedo ir por los dolores k tengo,estoy muy triste y muy deprimida y quisiera k me ayudaran contandome como empezaron con sus sintomas se los agradeseria muchisimo.:crying:

I'm 20 but feel 80

hawaiiangrl85 — Thu, 30 Nov 2006 12:46:27 GMT

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.

Anyone looking for a support group on facebook please join "Juvenile Arthritis Families" group

Jason Scheer — Sat, 06 Feb 2010 17:50:12 GMT

Please post your experiences with JA...My hope for this page is that it could become a place for all of us to come to talk about good things that are happening, as well as obstacles and struggles any one of you are facing.