Thursday, May 31, 2012

KrystalsMom

By Tina Thursday, December 17, 2009

My daughter Krystal is 17,she has Juvenile Diabetes and just diagnosed with RA as well. She has a really great doctor, but the meds that he says work the best like enbrel, etc are very risky with her Diabetes. The alternative he has for her is a combination of pills, these pills take several months to work while he says her RA is aggressive and she may have a few distructed joints within several months. This is her senior year in high school and is now being tutored at home to save her from some pain and give her rest when she needs it. Just when we were starting to plan college and independence she is now at a crossroads and we don't know what to plan now. I find lots of people telling me to get her on SSI and to get help from various organizations. What should I be doing for her. I want her to esstablish some independence like most 17 year olds but she doesn't even have her license, we are affraid her reaction time will be slow due to her hands and ankles. Any one have any good advise on what to do next, how much do I push her to get active in future plans and the world of RA, What kind of things should I expect now? Cry

12/17/09 9:20pm

Hi There,

I just read your post and the only advice I can offer is let her get her license.  I have had RA for 18 years now and I was diagnosed at 18.  And, like your daughter, my disease was extremely aggressive those first few years.  By the time I was 21, I had had my 1st hip replacement and by the time I was 25 I had both of my shoulders replaced and my feet reconstructed.  That said, without my liscense, I would have been very lonely.  It was difficult living with the disease, but like your daugther (and yourself) I looked at university as a fresh start.  I became a teacher (with much support) from my family and the ability to drive myself to classes and build a schedule around what works best for me.  Maybe while you are at home with your daughter you can talk to her about what she wants/feels she needs/etc.  Getting involved with the Arthritis Society is also a very good thing for your daughter.

I hope this helps.

Merry Christmas,

Cathy

Toronto, Canada

Mom to 3

12/22/09 3:28pm

Thank you for the advice on Krystal's license. I want her to have some freedom, but I don't want her slow reactions and pain to cause her an accident. She has applied for Early Childhood classes at a Technical College close by. She loves kids. SmileWe have an appointment with a DVR specialist in the area to get her started with all of this schooling and everything. I am hoping that we can get her some really good help. Thank you for sharing and taking the time to give advice.

 

Lene Andersen, Health Guide
12/22/09 7:50pm

I got RA when I was four, it galloped out of control when I was 13 and by 16, I had deformities, many mobility limitations and used an electric wheelchair - just encase you freaking out as you read that, this was a long time ago and it's very rare for people with RA to end up using a wheelchair these days. I finished high school, got a bachelors degree and a master's degree, worked as a social worker, worked in the human rights field and am now a writer and photographer. Which sounds an awful lot like I'm tooting my own horn, but what I'm trying to say is that there are no limits. Well, there are physical limits to what you can do with RA, but in my opinion, the biggest mistake you can make is to protect her daughter by not encouraging her to pursue her dreams. Send her out there to try, support her as much as you can and if it doesn't work, encourage her to redirect her efforts. There may be a drivers' ed program somewhere in your area for people with disabilities and if so, it may be a good idea to contact them regarding assisting your daughter to get her license - they will be able to assess whether her pain levels affect her ability to drive safely, as well as be knowledgeable about various assistive devices that can be installed in the car that may enable her to drive without undue stress on her body.  If you have difficulty locating this, contact a social work department in the nearest children's hospital or children's rehabilitation hospital.

 

SSD may be a good move - when you receive SSD, you may qualify for assistance from a vocational rehabilitation program to attend school and that might be helpful for your daughter. Check out a post I wrote about SSD - it has links to a number of resources that can make the application process easier. As well, I written a post about going back to school when you have RA and again, it has links to useful resources, in particular a transition guide for high school students with disabilities who are looking to go to college. again, I would recommend that you find a social worker who has experience assisting children with disabilities, as they are likely to have the information you'll need and probably a whole lot of information you haven't thought of yet.  I've also written a post on parenting teens with RA that again has links to various resources and not too long ago, I wrote a post about parents having expectations of their children and how that has helped me pursue my dreams and sometimes even fulfill them. It may help you and your daughter.

 

I would also encourage your daughter to check out this site, ask questions, write a SharePost and read other people's posts. We are looking at developing an area for teens with RA on the site and would very much welcome her input and suggestions about what would be useful - feel free to encourage her to send me a message. As well, I'd like to recommend a couple of books for you: Juvenile Arthritis: The Ultimate Teen Guide (we're planning to post a review and interview with the author in February) and The First Year with Rheumatoid Arthritis is a fantastic resource that covers all areas of living with the disease and can be very helpful - the link will direct you to a review/interview with the author I posted some time ago.

 

1/14/10 3:16pm

Thank you very much for your advice. It is much appreciated. We plan on helping her get her license this summer. She is starting Enbrel in another month and then we are hoping that will help things for her.

She was diagnosed in September and she already has deformaties in her wrist and knuckles, so it is moving very fast for her and nothing really seems to be working. Methotroxate is helping a little but she is already on the max dose of that.

We have appointments with DVR and SSI to get some help for her as she will be 18 in May and I don't want her to have all these medical bills right off the bat. So I think we are moving in the right direction, its just taking some time.

 

Thank you for your information.

Lene Andersen, Health Guide
1/18/10 11:00am

Good luck to you and your daughter!  I hope the Enbrel will be as much of a miracle drug for her as it was for me.  Please let us know how things go?

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By Tina— Last Modified: 12/19/10, First Published: 12/17/09