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Nikiangel
Regular Member


Date Joined Nov 2009
Total Posts : 29
   Posted 11/19/2009 7:04 AM (GMT -7)   
I was diagnosed with Juvenille Rheumatoid Arthritis at age 2.  I am now 36.  For the many years I have had this, I've  been on multiple drug treatments, physical therapies, doctors, and NEVER have I felt as frustrated and lost as I am at this time in my life.  Because I've had this for so long, the disease has eaten away at my bones literally and now I'm finding myself getting ready for surgery and wheelchairs that frankly I'm not ready for but seem like my only way to stop pain.  Yes, I've had a great 36 years, I have a wonderful husband and my miracle child.  They always told me I couldnt have kids cause of my JRA, and all I remember wanting to be was a mom.  When I finally had her I fought my pain, ignored it really, and did what I had to do to be the "soccer mom" and "super wife" that I wanted to be.  But now, I find myself just wanting to stop fighting and be in the wheelchair.  I know that I could be worse off than some.  My husband is a radiology tech and has said that to me alot lately.  Telling me about the cases that he has seen that are far worse than my own. And how I've always been a fighter and I should keep fighting.  And where his intentions are good, I feel annoyed because they arent me and I'm just tired of fighting!  That may seem selfish but thats where I am at this point in life.  I dont want to complain anymore about my endless pain, and I dont want to burden my family, and I dont want to stop being soccer mom for my little girl.  BUT, I CANT take the pain anymore.  I have been to a pain management doctor, am going to a surgeon within the next few weeks, and am on a great drug treatment that has kept me from having a flare.  The one vice I have is I smoke.  The doc's nag me constantly on this but I feel its a trade off, my vice for the years of pain I'm enduring.  The pain I have is from years of disease eating away at my joints.  Not something they can readily fix with pills.  Ok I've rambled.  I guess my question is...is it wrong for me to feel annoyed when there are people worse than me?  Is it wrong for me to want to stop fighting when I just cant take the pain?  Is it wrong to just give up and want to be in a wheelchair so I can be off my feet and stop the pain?  I just want to know what I'm supposed to be feeling cause frankly, I dont know.  Should I fight? Should I take time for me and just stop? Should I get mad at my family for not understanding my annoyance? Ok, sorry this was super long, just got too much on my mind.  GB. Jenn

Lynny23
Regular Member


Date Joined Jul 2009
Total Posts : 49
   Posted 11/19/2009 8:10 AM (GMT -7)   
hi, I am so sorry that you having such a hard time lately. I cannot understand at all what you must be going through as my story is very different. I am 24 and have only recently been diagnosed with RA. I am lucky as they seem to have found it early due to them testing me quickly because my mother who passed away at the age of 42  when I was 14 had severe SLE and my doctor was worried it could be the same as her. My mother is my hero and always will be. I was her miracle baby, and boy did she become super mom- struggled everywhere for me- never letting me miss out on anything. Looking back I did not understand that it was so hard for her then but now I see so clearly that she was hardly able to walk some days but forced herself to go on. I wish I had of helped out more but as a kid I didn't understand properly. Loosing my mom was very very hard and I wish she had rested and relaxed more instead of always trying to keep me and dad happy. My advice to you would be not to give up but to realise that its ok to be angry and feel sorry for yourself and its ok to not be super mom all the time! Your kids love you and will understand if you have to rest sometimes rather than doing other things. You need to look after yourself and take time out to look after your own needs and its OK to do this! I understand getting angry at family once and I while. I got married last year and not long after is when I began getting sore joints and being so tired all the time. Id be crying in the middle of the night about my hip of my wrists and my husband didn't understand. At one stage he told me that everyone gets aches and pains and to just deal with it. It made me so angry and made me doubt myself but now I know that my pain was very real and that others may be worse off but its OK to feel sorry for your own situation too.
I don't know your pain as only you know this but I do know that you must look after yourself and take time out once and a while. Its hard for people that don't have this disease as they can't understand the pain and what you are feeling but never let them make you feel like you don't have the right to complain. You do have the right to complain- its not fair and self pity is normal every once and a while.
 
Sorry this reply is so long and I don't even know if it will help but my thoughts are with you. I understand being scared and confused as I begin methotrexate tomorrow and I am very scared- I know its nothing compared to what you are feeling but its just to prove that everyone thinks of themselves and its ok to do so. Do whatever it is that will help you feel better but please don't give up completely- we are all here for you if you need to talk. This is a great site for support! 
 

SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 11/19/2009 12:50 PM (GMT -7)   
Hi Jenn,
Its understandable to feel the way you do, you are just trying to live a 'normal' life with what you've got. I agree with Lynn - take time out for yourself too - your family can only benefit from a 'rested' Mom.
You have already come so far with this disease having never known life without it - how brave and strong you are. Keep fighting!
Jo
Crohn's Disease
Ankylosing Spondylitis
Current meds: Methotrexate, Prednisone, Humira
Bowel Resection Sept. 07


Nikiangel
Regular Member


Date Joined Nov 2009
Total Posts : 29
   Posted 11/19/2009 3:35 PM (GMT -7)   
Thank you both for your kind words.  I'm trying to do my best.  I just feel like no one gets it and I dont want to be mean, its not my way.  Like today for instance, my aunt and uncle came up to help me with leaves in my yard.  I said ok but lets keep it to just the back because my foot is so bad.  We ended up doing the whole yard.  Now we dont have a big yard but we have to take the leaves, load them in a tarp and drag them about half a block to dump them in the woods.  Thats hard work.  I wanted to say no thats it I'm done, but its my house so shouldnt I be helping? So I did what I normally do.  I muddled thru and now, 2 hours later I can barely walk and am waddling like a duck.  My feet hurt even when I sit.  I mean should I have been nasty? I cant, they came to help me.  But now I feel like I should have said, ok we are done thats it my feet hurt.  Its times like this I question myself and pay the consiquences later.
    On a side note, I have been on Methotrexate for about a year and a half now.  No real bad side effects thank God.  I do drink lots of water, especially when i take the pills.  The one drug I do regret now, is the prednisone.  I was on high doses (80 mg) a day for over a year.  It was great at the time.  I felt like there was never JRA there.  However, I have recently had an xray done of my foot that hurts all the time.  It showed that I have bone missing from the ankle joint.  They say part of it is from years of having this disease.  The other part was from steroids over a long period of time.  If either of you have to be on this, please be careful and dont be on it long unless very necessary.  Hopefully, no one will have the effect I have.  From my mouth to Gods ears.  Its days like today I want to give up. Hopefuly I will have a productive day without pain, and the reason to fight it will come back.  Ya think?  GB
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