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Help, but not for me.
Posted by: Tanya Heller on March 13, 2009 at 3:42PM EST
My heart is heavy.   My daughter was diagnosed with RA on her 19th Birthday.  She had aches and pains throughout high school.  She was very active and in retrospect I now notice her athletic ability declined over her 4 years of high school.  Her father never saw his grandmother walk.  They called her "little grandma" and as long as he could remember she was in a w/c and could not straighten her body.  Immediately after her diagnosis she was put on Methotrexate. She did get really depressed and cried all the time (first year of college).  She then went on an Embrel Study for about 2-3years.  During the study she went off and decided she didn't want to be treated for RA anymore and didn't want to talk about it.  2 years ago I began to notice how disfigured her hands were becoming and now she can barely use them.  Her fingers are not functional but she rarely complains of pain.  She lives independently, holds down 2 jobs and is beautiful inside and out.  Except when it comes to talking about RA.  She will not talk about it, see her Rheumotologist (over 5 years), or research it.  I don't know how to approach it.  She will be 29 this summer.  Did anyone go through this?  Can you point me in a direction of some help?  Thank you!!
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(3) Comments
Posted by: Brooklynn on March 15, 2009 11:32PM EST
I am so very sorry to hear about your daughter and her situation. You must feel very helpless. Unfortunately, RA is a progressive disease that will worsen as time goes on with out treatment. There are many medications out there that actually help people have a good quality of life once they are working. I'm very sorry for what she is going through. I was recently diagnosed myself at 38 and part of me wants to run away from it and pretend it doesn't exist. I understand how she feels. She may consider joining the RA Connect Forum filled with many supportive and knowledgeable people who have been there or are there. It has helped me through this immensely. We'd welcome you, too. Best of Luck in convincing her to seek help.
Brooke

Posted by: Anonymous on March 17, 2009 9:53AM EST
Thank you Brooke. It means a lot that you took the time. I hope soon she will come to her senses, but I hope it doesn't progress too far.
So what about you. Did it take many medication trials? What have you found that controls and helps your RA. Do you have a lot of pain?

Posted by: jennifer goessman on March 23, 2009 12:44AM EST
I'm 31 and have had RA for 2 yrs., and sadly I know exactly how your daughter feels, I have refused treatment for my RA due to my fears of the side effects. I pray daily for this, because I'm getting worse weekly, and I have 4 little boys to think about. You sound a lot like my mother, she worries as well as my husband. I can tell you it's really hard to accept the disease at our ages, we feel 80, not our age. My dad says I'm hard-headed, and he's right, but I'm new to this site and don't usually use places like this, but it seems like there are a lot of caring people out there that want to help. My doctor says I'm wheelchair bound in 5 yrs. if I don't start treatment, so I pray daily to give my family the gift of just trying the medicine, I'll pray for you and your daughter, I know it's hard mom, but just keep knocking at her door, eventually she'll open it I pray. I know my little guys wouldn't know what to do if mommy got worse, so I need to take a little of my own advice. Bless you

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