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Rheumatoid Arthritis
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Posted 5/19/2013 4:48 AM (GMT 0)

Hi there , I am a mum of a newly diagnosed 23 year old . She is really struggling with her diagnosis as well as all the obvious RA symptoms . She does not want to talk about it or barely acknowledge it ( sound familiar guys ) and obviously a her Mum I want to do the best I can to help without interfering .

  I just wondered if anyone could give any advice and if anyone else of a similar age to her can give me some input . She is on Methotrexate and Sulfasalazine with Folic acid .

  Thanks in advance for anything .....this was something we never predicted but I guess no-one else does either cry

Posted 5/19/2013 5:32 AM (GMT 0)
Hi and Welcome to HealingWell, I now it must be hard for your
daughter to deal with being diagnosed with RA. There maybe youngster here whom have RA. But there are good people whom can help.
Posted 5/19/2013 10:21 PM (GMT 0)
I was the same age when I was diagnosed. I didn't want to talk about it either-except with my doctor.
There was nothing my family could do, there is really no way for someone else to understand it so what good would it do burdening my family with all of it.
Posted 5/21/2013 7:00 PM (GMT 0)
I'm not young, but I think the best thing you can say to her is "hey, if you ever want to talk about it, I'm here" and make sure you are there to listen when she needs it. Maybe ask her if she would like a girls night out to the movies, "The Lone Ranger", with Johnny Depp is coming out this summer it might get her distracted off her RA and might help her to re focus..but for now seems like she just needs a little time to adjust. I know for me the scariest thing is the self injection of the mtx (methotrexate) and she might be afraid to have you see her doing that, I know that was a real fear for me is anyone having to see me inject my mtx as I'm a private person...many well wishes to you. I had to raise a daughter with a heart condition and I plan to be there for her should she need help as she does have to see a cardiologist every other year and last time she wanted me back there with her for her echocardiogram and I held her hand...It's hard to watch them grow up with a disease but, she'll be fine once she comes to terms with it...Just be there for her when she asks, maybe look on line for info on RA so you can help her better when she asks you...There is a National RA website in the USA.
Posted 5/21/2013 7:08 PM (GMT 0)
Thankyou everyone - your responses all ring a bell with me . Yes sjkly that is very much her attitude but it is still very early into her diagnosis and I do understand she feels her life has changed greatly ( and not in a way she would have intended ) . Hopefully I can follow your advice Chartreux .... so hard to suppress the mothering instinct at the moment but I will !!! I am pleased to have discovered these boards and when she is ready I will introduce her too :-) Thankyou again .
Posted 5/29/2013 10:07 PM (GMT 0)
I am so sorry. Being the parent of a child with a chronic health condition is tougher than having the illness yourself. One of my kids is a terrible asthmatic and has been on life support numerous times. I would rather have it myself than watch him suffer.

RA is a bummer at any age. Learn all you can, as there are many systemic complications of RA. It is so much more than just joint pain. Being well informed puts you in a position to advocate for your daughter's health care needs. When your daughter is ready...she will ask, and you'll be in a position to offer support and guidance. It will also give you some insight as to what it's like to live with this illness. There's a pretty decent web site called RAwarrior here in the states, that does a pretty good job of explaining not only what it's like to have and live with RA, but information about different RA medications and side effects, tips on buying shoes (many of us can't wear just any shoes), etc. I have found much of it to be pretty helpful. There are also several UK members that post regularly on this site.

Best of luck to you both. It's a journey...but not one without hope. Hang in there.
Posted 5/30/2013 2:31 AM (GMT 0)
I have Ulcerative Colitis and was later diagnosed with RA. I am only 17 so I dont know how much I could help, but I really just hated the pity and sympathy because no one can really understand what its like unless they are in your body. I currently have pouchitis from getting a j-pouch, so I cannot treat my RA in any capacity. I am in a lot of pain, but I have found a love for swimming and steam rooms to relax a bit. Enough about me, but honestly time is the best healer in accepting what has happen and just letting her be able to find something that helps or works. Time is really the best thing and do not push her, but maybe search somethings around the area that could help.

I hope this helped, I am kind of new to this whole thing.
Posted 6/24/2013 7:45 PM (GMT 0)
Hi there , an update so far. I have amazingly managed to not say anything and to be led by her . She has now acknowledged it and we have tentatively talked a little but definitely not pushing anything - yes I think you are right , time is the best thing . It is so hard to not want to rush into 'talking' about everything and nothing .

  When she is ready I will recommend this site to her so she can chat to people who know how it is and maybe find some young people to swop stories with . I shall continue reading the boards as it helps me enormously . Thankyou so much everyone x

Posted 6/24/2013 8:03 PM (GMT 0)
The Lone Ranger Movie comes out on July 3rd maybe see if she would like to go with you and just take your cues from her, she'll talk when she wants to and it is hard, but sounds like your doing good! I have plans with my Daughter for July 16th and we plan to see the Lone Ranger then! Johnny Depp as Tonto sounds like a good movie...Our plans got moved back, because of her job but I'll take all my moments with her....There is an " RA Chick" website which might have more younger people on it so you can check that one out as well...
Posted 6/30/2013 7:17 PM (GMT 0)
Hi! I am 25..i was told I have RA when I was 24. It was really hard to hear that I have RA at such a young age. I didn't really talk about it either. But in time I did talk about it. People in my family have Arthritis...so I would talk to them about my symptoms and how I was feeling. They said to take my meds, write down how I was feeling that day (so when I do go see my rheumy I can tell him), and to keep moving. The worst thing to do is to just sit and do nothing. Because you will get stiff. I still have my days when I am stiff or in pain, but compared to a year ago...I am doing a lot better!! So just let her know that it does get better in time!

I am Glad to hear that she is talking about it a little! I hope she gets to feeling better!
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