Just need to vent...ugh

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Nikiangel
Regular Member


Date Joined Nov 2009
Total Posts : 29
   Posted 6/20/2010 6:25 PM (GMT -7)   
I'm just having a bad 2 years and its only gotten worse.  I have Juvenille Rheumatoid Arthritis.  It's like normal Rheumatoid Arthritis except I was diagnosed at age 2.  I am now 37.  I have dealt with years of going to school in wheelchair, going to rehabilitation to get exercise, whirpool therapy, long hot baths, TONS of steroids, cant count medicines I have been on since age 2...too many to keep track.  Needless to say, I have hit a strange part in my life where I dont know how to get "positive" again.  I have a wonderful family, always picking me up when i feel down.  Never letting me get too depressed cause it really doesnt help.  I have a loving husband who carries me wherever I want to go by the end of the night, because thats the time I usually cant walk.  I have a beautiful 7 yr old daughter, who, even though her nickname for me is "mumble" which i love (like on the movie happy feet - penguin) when she sees i'm hurting will help me walk to the next room if I'm stiff.  I have sketcher sneakers which have been a BONUS in my walking.  I am still able to go to school functions with her and toss a softball to her (her favorite thing). I can still dress myself with loose clothes and cook.  I'm not in a wheelchair and i'm doing ok.  On "good" days just my 2 ankles, 2 wrists and 2 knees hurt.  Why then the "low point" that I cant find a way out of? The problem seems to be that no one knows what to do for my disease.  Apparently I'm having a flare, but not.  All of my joints hurt and there are NO signs whatsoever taht I'm having a flare except for the pain.  No swelling or hot joints.  No inflammation that they can feel.  I'm on steroids which usually helps me feel somewhat "normal again" but are not working.  Hot showers arent working at all.  Nothing seems to be working.  This is the first time in a LONG time that I'm on pain meds, which I cant take in the daytime because I have to care for my kid.  My husband goes to school full time and works all night.  So until August I'm kinda on my own with her and cant be drugged up.  Why am I sad and mad at the same time then?  For the simple fact that they being the doctors claim:  Because I have had JRA for so long, the "flare" is no longer visible because now there is so little cartiledge from years of damage that its affecting the bones.  The bones are fusing together on their own from lack of use.  I have 10% movement on ankles and wrists.  The medicine they are giving me deals so the other joints dont flare. but the only thing they can think to do for my feet is fusion and wrists in a year will need same. Not ready for that yet.  Is that wrong?  I still feel the need to keep what little movement I have so I can be a mom.  I'm just totally discouraged because I'm not ready for a wheelchair or surgeries.  I feel it will mess up what little kind of "normal" I have....if that makes sense. My family says "fight like you always do....you will beat this."  I used to think yes, I defied all docs when they said wheelchair at 30.  I'm still walking.  I showed all docs when they said no kids and I have my miracle baby.  At this point, with everything fusing and hurting and needing surgery, I want to fight but I think my heart knows, this time, I have no choice.  All the specialist I have seen agree.  "You need surgery or you will be "totally" disabled.  I want to keep the little movement I have.  I guess my heart is just not ready to face reality, my bones are tired.  I know there are people out there worse off then me, but for me, I've been thru enough for 35 years....why cant this disease just hold off a little while longer til my daughter is older and my hub has a better job with more money?  Can't it just give me some sort of break?  Just wanted to put this out there.  For all of you dealing with this disease, I say fight!  It helped me for all those years before the joints started doing their own thing....so it worked.  You are all in my prayers.   Thanks for letting me vent...sorry its so long.  Niki

harrington49
Regular Member


Date Joined May 2010
Total Posts : 355
   Posted 6/21/2010 5:10 AM (GMT -7)   
Hey Niki

I am so sorry for you, you are so young to have suffered so much. I wish I could do something to help you. I have RA in my arms, shoulders, hands and slightly in my ankles, not nearly as bad as you and not for as long as you either. My heart absolutely goes out to you, you are so strong, fighting, being a mum, throwing a softball, looking after your sweet little girl and cooking and doing all the other things that you do. You are a long way from a wheel chair I can tell you that, you are stronger than you think and such an inspiration to everyone with RA.

You are in my prayers and my thoughts, keep fighting Niki, you are so strong for having fought it all these years.
Harrington49


andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 6/21/2010 6:43 AM (GMT -7)   
I agree with harrington, you are an inspiration to us all and stronger than you think, and your allowed to have your melt downs like the rest of us. Geesh to have dealth with this since you were two is just plain cruel, but you are living proof that you can get through it because of your wonderful strength and will to keep on going. Your little girl would be so proud of her mummy too Im sure. My poor old joints ache like crazy too but I have only had this to contend with for about a year, although my doc seems to think I probably had it for much longer but it was kept under control through the extensive amount of meds I was on for crohns/colitis (which are mostly the same as we have for RA). I have suffered with crohns for 22 years and had an ileostomy then developed the RA, so I can understand how you feel. You are doing wonderfully, I wish there was more I could say to help you as well, just know you are not alone and in my thoughts and prayers. Take care and vent away all you like, we all need too do that at times :-)
Doreen

Nikiangel
Regular Member


Date Joined Nov 2009
Total Posts : 29
   Posted 6/21/2010 7:09 AM (GMT -7)   
Thank you both for your reply.  I am a fighter and I do try to stay strong.  I just need to vent too because every once in a while....I just cant take it.  I'm sorry to hear you both are suffering.  never give up hope.  I know I am in a "down spiral" now, but my fight always comes back.  There are always new meds, new treatments, new hope and new friends to stand by you.  I'm learning that.  This is the best place I have found.  If I need answers, people can help.  If I'm feeling low, people share their stories and lift me up.  I love being a member of this great forum and I love the people in it.  I wish they had this kinda support a long time ago. You are both in my prayers.  Niki  wink

greyhound
Regular Member


Date Joined May 2005
Total Posts : 277
   Posted 6/21/2010 8:30 AM (GMT -7)   
God bless you. I added you to my prayer list.
Adopt a retired racing greyhound


antbuggey
Veteran Member


Date Joined May 2010
Total Posts : 594
   Posted 6/21/2010 8:56 AM (GMT -7)   
Hi again Niki, like the others have already said, and I think you know in your heart, you are an incredibly strong lady! I am just starting with this problem, however, not new to chronic pain. I injured my lower back 3 years ago and have suffered daily with pain and nerve problems ever since! But this is different and scary! You are an inspiration to many and always know that you can come here and vent anytime!!!! You are in my thoughts and prayers! Take care of you!

Gentle Hugs,
Beckey
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