Wednesday, January 16, 2013

Diagnosed


I was recently approached at work by a co-worker whose daughter had just been diagnosed with RA.  She is 20 and they have already been to a few visits with a local rheumatologist.  The meds are helping some but she is still terribly depressed over it and feels her life is over.  I remember feeling that very same thing after my diagnosis 9+ years ago.  She asked if I would be willing to speak with her daughter and I have corresponded by email with her.  I wished that the rheumatologist would go over this with new patients, sort of like an introduction to life with RA for all new patients.  It wouldn't have to be a long meeting but it would also give new patients a chance to talk with other new patients and let them know they aren't in this alone.  Below is a part of one email I sent her.

It's a scary time right after your diagnosis, you have many unanswered questions and many doubts about your future. It's good the medicine is working, give it time. What works for one person may not work for you so don't worry if you have to change meds, this is pretty common.  It takes about 6 months to see the full effects after you start or change meds.

This will probably be one of the hardest adjustments for you to make at your age … you cannot care what anyone else thinks. You have to take care of yourself and get by however you can. Use all resources you can find to learn all you can about RA. No one else is going to take care of you, you are going to be your own best advocate for your long term health care. At first I tried to keep my RA a secret from everyone but soon saw it as an opportunity to educate others. Most people are receptive to learning, they just don't know anything about RA. I know I didn't before my diagnosis.

It's important that you understand your life is not over. I thought that at first also. Yes, your life will change but you have to learn to change with it. You will soon learn when you can push yourself and get away with it and when you just need some down time to rest. The worst thing for me (most days) is the fatigue.  I don't ever feel "rested" after 7, 8, even 10 hours of sleep. Every day I wake up, I am just as exhausted as I was when I went to bed.  It has been 9+ years since I was diagnosed and I still work full time, ride a dirt bike and an adventure bike and work out when I can. Don't ever give up!

Our winter sucks this year.  Instead of our normal 50-60 degree days, we have been hammered with 20-40 degree days with rain, sleet and snow going back to four days before Christmas.  I have only rode one time since December 21st and that was just this past Friday night to work.  It was 70 Friday with the over night temp just dropping to 55 so I took advantage of it and rode an extra 45 miles on the way home Saturday morning.  Not what I like to ride but it felt good to be back on the bike even for a short ride.

11 comments:

Cathy said...

Terry, your choice of words are great. I wish I had found someone like you right away. Lucky girl! It is so scary at first, isn't it? Even later at times I guess. But we figure it out somehow, someway.

Kim said...

I agree with Cathy and yes I wish someone had been there to explain it to me. So . . . pretty much suck it up and get on with it. I especially liked your advice about not worrying what other people think and do what is necessary to take care of yourself. You do have to become pretty thick skinned and tough. This is also the first time I have read someone with RA talking about the fatique. For me the fatigue is the hardest part to deal with. At least today it is. I was 52 when diagnosed but know I had it for 20 years at least. But to be diagnosed at 20 seems like it would be scarier. I think you set a good example of how to have a good life even with RA so she is lucky to have you to talk to.

Wren said...

What kind, practical and truthful words you shared with that young woman, Terry! I wish I'd have known someone like you back when I was diagnosed 25 years ago. NO one knew anything about the disease and no one I knew had it. Even today, the only people I know who have RA are you and the other bloggers in the RA blogging community. But knowing all of you has been such a blessing!

My fingers are crossed that that young woman's meds will keep her disease well under control and that she doesn't experience too much pain. And you TOO, m'friend. I'm sorry you haven't been able to ride much lately, but spring is coming. May February be a gorgeous month for you!

Terry said...

Thank you Cathy, I wished someone would have sat me down and explained a few things also. I never hesitate to talk to someone when I'm approached now. I think you drive home a point that even after nearly 10 years of living with it, it still scares you at times.

Hello Kim. Thanks, I hate to think of young kids being diagnosed with RA and JRA. I was in my mid 40's (had lived with something probably a good 3 years) when I was diagnosed. I have seen people stare, point and snicker at me while limping and hobbling, mostly younger people. You can't let it get to you. I hate the fatigue, it is something that never goes away.

Wren, thank you, thats why I never hesitate to talk to someone recently diagnosed ... I didn't have any one to talk with about these things. I enjoy following and talking with fellow RA bloggers too. It really helps to visit with our own kind. haha
I think the meds are going to work for her, she is doing a little better but, as you know, it is a long, never ending battle. I am sooo ready for spring weather and getting out to ride again. I have cabin fever just after 3 weeks!

livingwithra said...

Terrible news for the young women. But she's so blessed to have your experienced words of wisdom. Part of a rheumy's prescription for a new patient should be make connections with other patients.
Andrew

mary said...

The email you sent this young woman was full of good advice. I was diagnosed in my 20's and remember sitting in the doc office with all these "old" people (they were probably the age we are now). I didn't meet anyone with RA until just a few years ago. It is nice that she has you to talk to about her RA.

Too bad about the weather where you are. Weather here has been very schizophrenic, 60 one day, 32 the nextand rain, rain, rain. Grabbing time outside when I can. Mostly riding the pain train this winter and looking forward to summer.

Squirrel said...

That's great you've offered your advice to this girl. When I was diagnosed a few years ago no one at the hospital told me of any support groups for young people or even suggested I should speak to someone about my feelings. Thankfully I found what I needed on the internet. I'm sure the young woman will do very well with time, once she's settled on her meds and worked out how to move forward.

Healing State said...

I am 21 and reading this post made a lot of sense.
I am still coming to terms with the new lifestyle and have recently started my blog as an output for everything I am dealing with.
I have had noone who I can relate too with the same condition so she is lucky to have you :)

Terry said...

Andrew, I agree. I am fortunate that I was older when diagnosed, I feel so bad for all of the young people living with RA or JRA.

Hello Mary, nothing earth shattering that I told her but it has come from experience of living with it for going on 10 years now. Wether has just flat out sucked here! Next week we are supposed to have a few 70 degree days and I have had 4 people call wanting to ride next week, I may have to go ride more than one day. lol Hang in there ... it will be spring before we know it.

Nice to meet you Healing State, I wish it were under better circumstances though. It is not easy (coming to terms) but you have a great attitude and sense of humor. You will do alright! If you have any questions, email me and I will try to help you.

farmhouselady said...

i stumbled onto your site from a ra site... just wanted to mention how much i enjoy seeing pictures taken from your rides! i would LOVE to be able to spend time doing that. i am a 68 year old woman with ra for about 12 years, retired. it was a sudden back disaster that forced me off work into early disability and retirement, but as i was coping with that, the mysterious "musical joint" routine started, and the ra took some time to diagnose, on top of the severe back degenerative disk disease and degen. arthritis and a bunch of other back ailments. anyhow, i am loving your recounting of your life with ra and of the way you manage to keep up with your love of riding. i have always had a secret desire to be a biker lady and do just what you like to do, set out and roam and look at things and smell smells and just all the mundane stuff of living. life never permitted that but it is good to get some doses of it secondhand. and i LOVE the pictures. i find beauty and fascination in the same kinds of outdoor scenes as you, apparently.

one thing that worries me though is, it really sounds like you are NOT being given the full benefit of what proper treatment could really be giving you right now. it does not sound like your ra is being controlled as it could be. myself, with a family history of lymphoma, i have refused to take any biologics, only methotrexate and stuff that goes with it, and i am probably not as controlled as i would be with biologics but i fear them. but i do not think you are even getting the level of control you could be getting with more interest, monitoring, and fine tuning from your doctor, that is what it takes, constant tweaking here and there of the anti inflammatories, the main ra drug whatever that may be, any other drugs that you might use. i really wish you would try to get your provider to WORK HARDER on your case because i hate to see such a life loving guy as you being deprived to the extent that you are, when i am pretty sure you could feel better than you do, more of the time. i sure sympathize with the fatigue thing. early on, i would sleep 24 hours and it would scare the crap out of me. but as i did get a semi decent rheum. and achieved somewhat better control, that issue receded. but think about it! try to press for tweaks to YOUR care, i KNOW you can feel better. you have to PUSH for it, as you implied to the young lady. do not just accept it until you have looked under every rock for a little improvement here, a little there... work at it. keep up with the rides and the reports and best of luck to you.

Terry said...

FHL, glad you found me and enjoyed my blog. I just turned 55 and have had my diagnosis fro a little over 10 years now. Probably closer to 12 or 13 years that I have lived with RA though. I don't ride pain free, but it is honestly, what keeps me going. I love riding and it gives me something to be involved in and keeps my mind occupied. When I'm not riding, I'm often working on one of my bikes or mapping out new rides.

The drugs and their side effects do scare you! I am going to talk with my rheumatologist about meds when I go back later this month. I trust the rheumatologist I am with today, my first one was not a good one. The rheumatologist I am with has helped me a lot. He pushed me to change meds the last time and I was the one dragging my feet. I always hate switching meds but it may be time to ... then again it may just be the progression of the disease.

Thanks for stopping in and I hope you will be back, I have some good rides planned for this year.