Hi everyone!,
My name is Jessica and I was recently diagnosed with RA. I'm 19 years old. I've never done a message board but I stumbled on this website doing some personal resharch.
A little about myself, as I said I'm 19 and a nursing student studing to get my RN. I was diagnosed 3 weeks ago and honestly I'm a little worried. I have mild RA and but I'm terrified of what could happen and what might happening in my future. Its mostly because I'm so young and I've studied it in school and done a lot of resharch but I don't feel any better about it today than the day I was diagnosed. I was wondering how any of you delt with the news and how you deal with it on a daily basis.
Thanks for reading! -Jessica
Hey Jessica,
My name is Kadi, and I am 18, I was diagnosed with JRA when I was 16. Right now I am studying kinesiology at university and I understand how tough it is to cope with the news and the stress of the disease while studying. I think for me, I know that when I get my degree I will be helping people cope with the same things I went through. I would focus on trying to get yourself on the road to recovery, so that your future will be as great as you want it to be. If you are on the right medication then the potential damage will be hindered, but they do take more than 3 weeks to take effect. What meds are you taking right now? Try to have a positive attitude while your body adjusts and the medications take effect. And plus christmas break from school! Hope this helps, and that you will feel better in a little while!
Kadi
Kadi,
Thanks for the advice, right now I'm taking mobic (just a general antiinflammitory) but I'm going to start taking plaquinel for right now, I'm still waiting for the prescription to come, and then at some point in the next few months my doctor is going to put me on mtx. I've been tring to think of it as just a lifestyle change and i think thats helped but every morning when it takes me 45-90 min to get out of bed in the morning its just starts my day bad. sense my diagnosis school has stressed me to the point where i've thrown myself into 2 flares so christmas break is deffinatly welcomed!
Thanks again for the kind words!
Welcome, Jessica!
Kadi is right, try not to get stressed - which doesn't improve one's RA but easier said than done! Everyone has a different way of relaxing - I am a 'bookworm' so find that if I stretch out on bed for a while and read, it helps - music another way.
Wll take some time for meds to work, and for docs to find a mix of them that will help you.
I read somewhere in a booklet published to help those dx'd with kidney disease, about how many folk go through stages of denial, anger, grief etc - similar to what I did when I was dx'd with RA. Took me a couple of years to come to terms with it - and I was much older than you. Knew nothing about the disease, had no idea that v. young people could get JRA and lupus. At least with more modern meds coming on to the market we are much better off than those of 50 years ago, and more research is being done. Am taking placquenil, Celebrex and mtx - the latter has worked well for me but there is no way I can leap buildings (or anything else for that matter! in a single bound
Remember, we are all here to help in whatever way we can. Just ask!
lorrie
Welcome to the board Jessica! Eveyone already gave you
lorrie,
Hello and thanks. I think the advances in medicine are one of the few things that help. I really believe that although my life isn't going to be exactally the same, but I can be alright and still do the things I want. I was wondering how the meds work for you, and if they helped with the process of coping you described (once they took effect)?
Sara,
I must say I understand where your mom is comming from, thats the one thing about nursing that I don't like is I know a lot. I deffinatly think the schedual thing is a good idea, right now i seem to just go with it. The fatigue is the biggest problem that i'm excited to hopefully get some relief from, and thats actually one of the biggest things that brought me to the doctor. I get on 16-18 hr sleeping sprees where I'm like dead to the world.
Thanks for the advice
Jessica,
I've just found your question to me that was never answered. Sorry! But hub and I went down with some sort of flu bug around Christmas time - he first, then me - and then when I finally came here again I obviously didn't flick far enuf back to see your post.
I'v had my ups and downs; for the first couple of years I didn't cope, but that was mainly because this site didn't exist, I don't think even the I'net was available to all and sundry back in 1981 - and every time I visited the rheumy I hardly opened my mouth in case I broke down and cried. The meds enabled me to continue working for many years until the office was closed down and I was unable to find another job; fortunately my hub by then had a good pay-out from his workplace and we have had enuf to get by.
You will have bad days and good. My salvation was coming across this site in its original form, before it was trashed and lots of info lost. Here I was in the middle of the night, finding the Jokes section, a long thread headed "You know you have RA if ... " and I realised that getting a treasure-trove of information together with being in the company of a group of folk who had learned to find the humour in certain situations and who also offered support, was a life-saver for me - more than the meds!
MTX and Celebrex seem to have helped a lot; augmented with a 15-day "pred pack" when things are really bad. I was fortunate that I was dx'd fairly early, and the RA was not as agressive as experienced by some on this forum. It was also a blessing to have made a friend while doing voluntary work, who also has RA - we compare notes and can discuss things that our families wouldn't understand about living with arthritis.
I hope that you can continue your RN course; even if in years to come (hopefully not) you are not able to always do full-time nursing on the wards, you can still put your knowledge to good use in other areas. And there are now more advanced meds available than 20 or 30 years ago. Best wishes to you - hope you do well!
Lorraine
Hi Jessica,
My name is Laura and like you I'm 19. I was diagnosed with RA nearly 4 months ago. I'm at uni studying English Lit. and Creative Writing. One of the things that has really helped with my degree was getting voice recognition software to write essays with when my hands are bad. You might want to consider looking at things like that.
I know what you mean about fatigue! It's a nightmare. Try to factor a short nap into your day. Also, don;t be afraid of telling your tutors etc what's going on - they may be able to help more than you know!
I hope things improve.
Laura
Hi Jessica. I'm pretty new to RA too, but the thing I wish I had really understood at first is that for most people, things get a lot better after the first months after diagnosis. It takes several months, at least, to get going with the drugs, for them to start working, maybe to experiment to see what will work best. But finally all that comes together and the majority of people find it gets a lot easier after that. Easier is a relative term, of course, but the improvement is real and a real relief.
And during that time you're making a lot of mental, emotional and lifestyle adjustments that are just, no way around it, very stressful. It's a lot to deal with especially when relief can be slow in coming. But that time does pass, somehow, and then you find that mentally and physically things are better, they make more sense, and you sort of get your life back and re-create a more workable life at the same time.
Of course this is a progressive and erratic problem, so it's a constant road of managing things, controlling the disease, making adjustments. But still, the particular kind of difficulty of those first weeks and months pass and it does get better. The fatigue gets better too, as you start to get the disease under control.
And believe it when they tell you it takes several months for certain medicines to work. It was a good 3 months before I noticed much difference with the plaquenil. And in the meantime I progressed, the problems appearing in new joints and the pain changing and getting worse. It was a time for freaking out. I sort of wished I had realized that while you're waiting to get better, you won't be sitting still but instead may well be progressing. It is, after all, the nature of the beast. I don't want you to sit and worry about that, though I imagine you will anyway. But know that even if you're getting worse while you're waiting to get better, most likely you'll still get better, and probably much, much better than you are right now.
Hello Jessica!! :) Glad you stumbled across us! I also have JRA, but I was pretty much born with it. It gets kinda nerve racking when you're trying to do school or make it through any major event, and that's the truth. But ya know what? I think even those of us with severe RA somehow always manage to make it out on top! :) You're so lucky you caught it now! If you stick around for some little tips and tricks and just general support, I think you'll do great. :) There's a wealth of knowledge out here(and all over!) use it to your advantage and you can do lots! I do hope we see more of you.
Hi Jessica, lots of good advice. No one knows what another's path is going to be with this disease. So many people respond so favorable with the meds that you can consider yourself in a good spot right now. There are lots of things to try and lots of areas for improvement.
I would suggest that you go to the Disabled Student Center at your school though and get whatever help you can to manage your classes. I don't know if they offer that at nursing schools. They do at most universities and even community colleges.
As you are thinking about your future, don't go for the killer occupations with long shifts and lots of lifting. Let your mind be your focus and your caring your guide.
Being young is an advantage in fighting this because of new developments that are happening all the time. Just a few years ago, they didn't have the biologics. In a couple more years, they might come up with something even more effective and hopefully, soon a cure.
Do start building yourself a strong support system because the one thing that is for sure is the constant change and adjustments you will make. But try and think of it as a roller coaster ride, an adventure in developing all of yourself. You are going to know from the inside out what your future patients are feeling like. Compassion will grow because you will learn to value it and when giving it, it will help heal your own pain.
Hi Jessica welcome...
I dealt with the news as a relief that lasted about as long as it took the rhuemy to explain what RA was. I knew my GP suspected something. He sent me to a rhuemy with a suspect case of Sjogren's maybe something else, but I really wasn't ready for a DX of Both. I didn't know what all the pain was about. I didn't know what RA was. I though I was just aging? I was clueless.
Thank you all for the nice and helpful words! I do feel lucky that I am young and it was caught really early and i don't have many problems besidse the fatigue, but thats also where I do get upset...it just doesn't seem fair i haven't really even lived yet. however i have autoimmune diseases that run through my dads side of the family and those family members were all diagnosed around 20-21 years old. which brings me to another question, does anyone else have family members with autoimmune problems?
I think this site is wonderful...it just makes me feel not so alone. I really had a rough winter (even with out the ra issues) and finding a support system besides my family has been an interesting process. just reading what other people are going through and feeling and how they are handling stuff just makes me hopeful that my life isn't over. I also think everyone in here is very kind and willing to help newbies like me--which i think is a godsend!
Going to nursing school (hospital based) seems to do wonders for me because there are people who really get it, i don't have to explain much, and i can get away with wearing slippers to school (my feet swell)! my only problem with school was last semester 4 days after my diagnosis when we were talking about ra in class and i just burst into tear...but i'm not crying anymore.
well i didn't mean to just go on and on...but thank you again for the nice responces...and thank you all for being open and taking about your experiences in general!
-Jessica
Hi Jessica! Since you are newly diagnosed and will be making decisions regarding treatment, along with your rheumy, you may want to research a treatment called AP (antibiotic protocol) that some rheumys use but few offer as an option to their patients unless it is requested. If you are interested, two good websites are: www.roadback.org and www.rheumaticsupport.net. Happy healing! PatJessica,
Am pleased that some younger folk added to my comments; I'm sure you will continue to get lots of help and support. Re the genetic history, my rheumy asked if anyone else in family had RA. I didn't know, but asked around. Found that a great-uncle on father's side had ended up in wheelchair with it (before the days of modern meds) and also one of his brothers had had it. One of my sisters has OA in hands; a half sister I suspect has RA but has tested negative, but also has OA and is being treated for that. My other siblings seem to have escaped ... so far ....
Lorraine
Maybe I'm one of the lucky ones regarding the meds - I started with MTX and prednisone plus pain killers. Nothing seemed to be happening except the pain got worse. Then, after quite a few months realised most of the RA pain had gone. Got some other problems related to having RA but basically doing O.K. Let's hope you're lucky too, and whatever the docs put you on will do the trick. You need to be paitient but meanwhile all on this board are cheering for you, including me - Des.Jessica,
Don't worry about the first few weeks on MTX. As you have probably read here, MTX makes you feel sick to your stomach during its onset. Just puke when you have to, because eventually taking it will make you realize it will make a difference. You may get the sick feeling the night after taking it, making dinner a puzzle of what sounds good and what makes me feel even worse :) Everybody here can probably attest to that. Anyway, I am a 21 year old but I don't let my arthritis slow me down. Try to keep yourself going with some type of active hobby. It always better to go and have fun, and then feel the pain the next day, than to never have done it in the first place. Its not the end of the world, you will be fine.
-Jon