Intro | Arthritis Information

Hi, I'm Emma. From looking around the board, I noticed you all seemed to hang here. But sorry if my thread is in the wrong place.

I got diagnosed with RA [at 18 yrs] last autumn after a disastorous family holiday where I spent most of it in bed... So I am very new to this thing. I've been on Methotrexate since October.

I'm just hear to find out things and get to know people that understand what things are like with it.

I read all this official stuff from medical journals about RA and it's so depressing. I'm only 18..... I'm not thinking of being laid up in bed in 5 years time. That thought scares me as I used to be so active and I'm planning to go to uni in September.

Emma

Welcome~

I'm sorry about your dx, it is difficult at any age, but especially the young. Talk to katie, I'm sure she will appear soon. She has lots of first hand knowledge regarding JRA.

Again, Welcome and post questions or just pop in to say hi and let us know how you are doing.

Phatgirl

Hello Emma!!!! :) Welcome!! Don't let those books and pamphlets scare you! Everyone is different. :) There are a good chunk of us here in the same boat as you. I'm 23 and was dxed with JRA when I was LITTLE. The best thing you can do right now is keep a good line of communication with your doc, take your meds, take your meds, and take your meds. LOL feel free to search around the board for answers to questions you might have. But do feel free to post a question if you have one. We'll be more than happy to answer you the best we can! Nice to meet you!!

Katie

Welcome Emma. I'm glad you found us. This board isn't moderated like some other forums; so if you post in the wrong place there's no one here to move it. The worst thing that can happen is that no one will see your thread. If you post in the RA section you can count on someone seeing it. Anthing seems to go here.

I started coming here a few years back while trying to learn more about MTX. I'd actually been on it two years before I found these sites. I only wish I had found it sooner.

Welcome to AI.

MTX hasn't worked for me yet. Am on a cocktail of painkillers to get through the day at the moment.

I'm hoping for some new meds when I see my doc on Wed. I'm also supposed to be starting aquatherapy soon with my physio. I'm hoping that will make me a bit stronger.

I have found that light massage works quite well, but nothing beats a hot water bottle!

Thanks for your replies. I hope everyone is OK.

Pondie39139.6721875

Hi Emma, and welcome..

I am so sorry about your diagnosis of RA. There are alot of meds that work to keep it under control. Are you taking any anti inflammatory? That helps with the pain and stiffness in your joints.

I have a daughter your age ( I am 40), and my heart feels for you. Keep your dreams alive, you can still go & do things you want to do, it just may take a little longer but it can be done.

Take care, keep posting, lots of people here know alot about this disease.

CinDee

I'm on alot of anit inflammatories. But I have found a few that I'm allergic to already. Not good.

I was on solphadol for a while, but that made me very sick.

Not good when you work in a shop and have to run off the floor coz you've gotta hurl....

ewww hurling is definitely not good. LOL

I take relafen and it seems to help me. I can't be without my heating pad!

Where do you work? And how long have you been there?

I work in a shop that specialises in running shoes and fitting them correctly. I used to be a really keen runner myself.

Been there 2 years in April

But no one does anything for me unless I ask. The lack of independence with this disease has already driven me crazy and I've only had it 6 months.... EEEK! My parents get a little bit protective sometimes. But it's been such a short time for them to get used to me and this, so I do feel for them seeing me like this.

But I haven't stopped cooking, I love to cook. It's very theraputic. I suggest it to anyone!

Good!! Hunny, do whatever it takes to hold onto that cooking passion!! Start checking out assistive devices, just so that you get an idea of what they cost, so it won't scare you if you end up needing a pan with a nice fat comfy handle or something. LoL Always good to be prepared!!

It's wonderful that your boss is sympathetic too, that is SOOOO hard to find. Congrats! See, you have tons going for you already! LoL

Me too. I also love to eat! lol

What is your favorite thing to cook/eat?

I love to make homemade pizza. I make the dough in my bread machine. We make it a family event and my 13 year old son loves to make his own.

I just don't like to clean up after cooking.

My friends are great, but new people are funny if I ask them to open a door or something if my wrists hurt.

I shall remain positive and hope my meds have been sorted by then!

I LOVE mexican food or pasta. And curries.

I eat mainly vegetarian as it's more interesting!

Aw, over time you'll figure out when to say "screw em" and when to take the time to stop and explain what the disease is. You'll get the hang of it ;-)

The main thing I hear people say when they hear I have RA is to say, "You're too young for arthritis".

We need to print up tshirts or cards to hand out explaining what ra really is. I mean, I didn't even know what it was until I was diagnosed.

I've been hearing that since I was 3. LOL

I bet you have Katie.

What do you say when someone says that?

Sometimes I also say, "I'm Special"

LOL
C

OMG I love that line....why didn't I think of that??? I was also in college. Really---most people didn't think twice about it. I
think they were happy to have a guaranteed sober driver after parties!

I explained most of the facts to my roomate since she would have to deal
with it the most often. I did have to quit the Rugby team for obvious
reasons but I still kept the same friends. Most people are so caught up in
their own lives at school that unless something really affects them-it
doesn't matter. I was really self-conscious at first but it was fine. My
close friends were a great support. My dr. also gave me his e-mail
address. He said that his college patients were his most troublesome.
Not really adults yet but no parents watching over thier shoulders. I was
able to e-mail him at any time with questions. That was a great help
since it is hard to be away from home when the RA is still new.

Beckyrocckyd39139.721400463

An RA diagnosis is very scary. Along with the symptoms, it is a lot to handle. Then add the meds that are prescribed with their side effects and it's enough to make you go crazy.

I am sooo thankful I found out about antibiotic protocol. I don't know why it isn't the first form of treatment. My RA hit hard in 2005. It has taken two years of being on AP and I am in remission. There were a lot of ups and downs but I can tell you it does work.

If you are interested in more info, check out:www.roadback.org. They have a forum there too and that is where I found my AP doctor. He is wonderful!

There is hope!!!

Becky

Hi Pondie...welcome!

Try not to worry about uni. I am 19 and was diagnosed with RA one month into my first term at uni (last Nov.). The university have been really understanding and offer loads of support, just don't be afraid of asking for, and taking it. I'm sure your flat mates will understand as long as you explain to them. Mine have been with me all the way through diagnosis and the first part of treatment - They have become very used to seeing me in my dressing gown!

Make sure you get in touch with the university disability officer who will point you in the right direction for funds etc. I noticed that you are from the UK (me too!) so you should qualify for Disabled Students Allowance. It helps you buy equipment such as a high quality digtal recorder for lectures or it can pay for note takers etc.

Take care

Laura

Hi Laura.

Sorry I haven't been around to reply, I've been working!

I shall definately look into the allowance.

How are you coping at uni?!

Hope everything's ok!

Emma

Hi Emma,

Things at uni are good - I've had a bit of an emotional wobble recently. My brain finally caught up with my body and didn't like what it found! I've managed to sort things out though and my new mantra is 'Ask for help when you need it - people are not mind-readers!' I'm very bad at admitting I need any form of help

Hope things are going ok with you.

Laura

Same here.

I had a wobble in the hospital on Wed when I went for my check up.

Locked myself in a toilet and cried it out. It has worked. Think I have finally realised that stuff is going on. I think I've been denying illness until then!!!!

Also went on a shopping spree, that always does the trick!

I'm glad you're ok and your uni peeps are looking after you!

Hi Emma,

Welcome to this forum. You're receiving lots of good advice from people. I see that you're planning to go to university.

Since RA is causing problems in your hands, be sure that you find a backpack that will balance the load so that your shoulders aren't going to ache. I just recently purchased a microfiber "healthy back" bag and I love it. There's no strain on my shoulders and it doesn't shift around.. it feels like there's hardly anything on my back. I've packed away all my shoulder bags and purses... this new bag is the only one I'll be using from now on.

I don't know if it's permitted to name a company product, but if it is I'll post it later on. If not and you'd like to know where you can get a healthy back bag, you can send me an e-mail. I'll have to update my profile since I didn't include it

Punkie39143.0921180556

Hi, I'm new to this forum also. This has been the best help for me. Sorting out what works for you, how you feel about taking the meds (it is a shock at first!) how they work for you and how restrictive the disease is and how it will bother your joints in the future. It is really a blessing you've caught it before your joints are worse, so you can prevent erosion (or what ever they call it). I'd had this for 15 years and played tennis and golf with very little discomfort until a recent surgery (that's changed everything temporarily, I hope) I want to get back to my art work, and all the things I used to do. MTX has worked for me. I hope you keep writing as we alll enjoy new members. Good luck with all this. Not hurting any more (I need to change my name)

Welcome Punkie and Pondie - With your original names and youth - you always have the option of creating a carton like Ren and Stimpy (Is that the name of that cartoon?????????) or something like that

They have been greatly recieved :)

And yes Roxy it is Ren and Stimpy... I haven't watched that in ages! Hehe.

Welcome!

I came down with chronic RA my jr year in college. As silly as it sounds try not to worry.

Do get a backpack with wheels so you don't have to carry books.

Always wear shoes that make your feet happy - painful shoes can result in permament damage even to the normals.

I didn't tell people about having RA unless I really had too. It really isn't any of their business. But then I have always hated and still do being singled out (good or bad), I just want to be treated like everyone else.

Yeah, I hopefully will have it controlled by the time I get there. So hopefully the few people that know the better. It's not that I'm worried about how people will treat me. It's just having to explain it OVER and OVER. Which I seem to do a lot at the moment. Drives me bonkers

Glad to have you with us, but so sorry about the RA that brought you here.

Please post often, there's always someone here.

Gentle hugs, Nini