Wednesday, October 2, 2013

A hurting girls words

I know when I was diagnosed I looked everywhere I could to find out how people with RA lived. How they felt about having the disease, how it affects relationships and their old lives. It is hard to come across things. A lot of people have awesome blogs about research, and the disease. There are some about every day lives, how positive people can be, they might be. I try to be positive. It is hard. RA effects  people differently. However, we all live in pain. If you don't want to hear the bad sides, don't read on. I plan on giving some really raw opinions on my life and RA.

Above all, RA sucks. It sucks bad. There is no way anyone could tell me different. Yes, somedays are better but even good days end with pain. 

Second, say goodbye to the old you. No matter how hard I try, I cannot do the things I did before. I cannot be the person I was before. Not physically or mentally. 

Before, I was optimistic, outgoing and a very busy person who did not slow down. Now, I am not optimistic. There were days I would be; only to get slapped down with a flare lasting months. I am an introvert as I don't get out much because of the pain. When I do I am miserable and not myself. Not only did I have to slow down I had to dead stop. The last few months I have been in a horrible flare. Somedays I cannot move my fingers or wrists. Somedays it is my shoulders and knees. Never relief. In the last week I have driven once, been out of the house twice and wanted to stay in bed because of the pain everyday. I get up only for my kids. 

I used to be a super mom. Now, before my three year old jumps on me, climbs in my lap or wants picked up I have to say that I can't. I have to ask him not to touch me. It hurts. Both the touching and the look in his face. I cannot get this time back. I used to look forward to outings, to doing things to make my kids smile, now I Dread them. I do them as much as I can but know I will be paying for it. I have to try though. I cannot bear to hear my kids tell their dad "mommy doesn't like me anymore,she won't hold me or play." 

Lets look back...RA sucks, you will not be you anymore, you will feel guilty, your attitude changes and much more I will get into later as my hand is cramping and I cannot write anymore. Sorry if this is too real but I wanted to get it out there. Yes it could be worse. But it still sucks. 


  1. This comment has been removed by the author.

  2. This is in response to "A Hurting Girls Words". I have had RA almost twenty years now and the pain remains the same but my acceptance has changed and there is healing in acceptance. I read your post and I wanted to share my experience with you in hopes that it might give you hope. My two daughters were nine and eleven when I was diagnosed and our lives changed forever. I went into a severe depression for years following the diagnosis and my children suffered because of it. I did not know how to accept something that was so awful but with time I have come to appreciate my good days and even some of the bad. I thought I was doing all the right things. I got us all into family counseling so that my daughters could talk about their feelings but years later I learned that they just wanted me to be present with them. I tended to isolate in those days and hide away in my room. I found out they would have preferred me to curl up on the couch and be there with them no matter what shape I was in. I also learned that even though I didn't want to be touched and kept my distance, all they wanted was to be close. I wish I would have allowed them to be near me more. On the up side, one of my daughters grew into a very compassionate woman as a result of watching me and she now works with children with cancer in a hospital setting. My other daughter just received her Masters Degree in Library Science but she had a difficult time as she has suffered from an anxiety and panic disorder which started just about the same time I got sick. I know if I would have accepted my fate better, I might have been able to model a brave, courageous mother instead of one that was lost, frustrated and confused. She needed me to be strong, I needed me to be strong. I feel I let us both down. But the good is that we are never too old to learn. So even though it hurts when I cannot let my three year old granddaughter be near, I make time for us in other ways, and she understands. I try not to say "no" too often and I make sure someone else takes her to the park as I cannot push a swing anymore, but there are many other things we can do to show how much we love them. Yes, I know how much it physically hurts and it is okay to cry but life still has many wonderful moments in store for you. I know you are grieving for the person you once were but I assure you you are becoming something greater. The universe has given you a reason to be strong, courageous and wise beyond your years. There is a gift in this challenge, but you have to accept it before you can fully see it. God Bless!