Posted in Fibromyaloga, rheumatoid arthritis

Coming to terms with RA and Fibromyalgia in my life


 

I am going on three years since my RA and Fibromyalgia came into my life.  Three years ago, I never believed that I could come to terms with my diagnoses and accept these diseases as a part of my life.  I remember grieving the loss of control over my own body – the one thing I thought I had control over.   

The uncertainty of a life with RA and Fibro was the scariest thing I could have ever imagined at the time. I was afraid of what I didn’t know and mostly because I did not know what was ahead for me. Here I was – 32 years old and having just had a new baby and I was scared about a life with chronic pain.  Not only was I scared – I was angry and frustrated.  I wondered what I did to deserve what was happing to me.  I also remember the feelings of denial and I never believed that I would ever accept my new reality or if I could ever even come to terms with my new life with RA and Fibro.  

Fast forward almost three years later and I am advocating for arthritis and Fibromyalgia.  In fact, I am going to be involved in an RA awareness event in the middle of July where I will be traveling to Washington D.C. to meet with other RA bloggers and discuss what we can do to bring out awareness for RA.  I never imagined myself being so accepting of and so involved in a disease that made me believe my life was over. In fact, thought that I would be disabled by this point but I am not and I am very grateful every day for that.  

When I first diagnosed, the hardest part for me was that I didn’t who I was anymore.  Prior to my diagnoses, I was a working mother with dreams of law school and so much more.  Then RA and Fibro came into my life and I wondered who I was now that I had no control of my destiny.  I remember that first major flare-up – barely being able to walk and not being able to use my hands.  My sister had to come to take care of my newborn son and me because I was in no position to do it.  Not only was I physically unable, I was an emotional wreck. 

I had no idea who I was and who I was becoming.  My self-esteem had hit an all-time low and I felt useless and helpless.  Chronic pain was destroying my ability to hold on to my inner strength. I felt that I was someone different because RA and Fibro invaded my life and this new person I was weak and so vulnerable. I thank God every day for my sister because without her, I am not sure that I would have been able to get through that very dark period in my life.  

It took me at least a year to find the strength to live through the chronic pain that was consuming me and to deal with the new challenges in my life.  There were days where I just wanted to crawl into bed and not get up again.  I wanted to give up and I clearly remember how dark that period of my life was. 

At some point, I realized that I had to find me again.  The “me” before RA and Fibro was gone but it didn’t mean that I couldn’t be confident and strong again. I knew that I had to find a way to smile daily even through all the pain and the chaos.  I knew that finding hope meant finding ways to feel better. It has been learning experience every single day but every day, I find out that I have strength that I didn’t know I had.  

Last month, I was in an auto accident.  It was a rear end collision that resulted in two herniated discs, one in my neck and the other in my lower back.  I am in pain again – probably in as much pain as I was when I was first diagnosed with RA and Fibro.  The difference is that this new pain is in my neck, shoulders and back, and it is pain I have not had before so it’s a new challenge.   

At first, I went through the whole woe is me routine but I also kept going – what other option did I have?  I am going to therapy, getting treated for my injuries, and not taking on more than I can handle. It occurred to me today that I am getting better at dealing with the big challenges that life throws my way. But mostly, I am starting to come to terms with what RA and Fibro have done to me.  The funny thing is that it’s not all bad.  True, my dreams and my goals have changed but I have also gained a lot.  I am stronger than I have ever been in my life but I also know my limits.  I have learned empathy and I have learned to lean on God and my faith when the going gets tough.           

So, I am coming to terms with rheumatoid arthritis and fibromyalgia as a part of my life.  It wasn’t easy and it wasn’t something that happened overnight. It is something that happened slowly and one day I realized that everything would be okay.

I have learned to accept the things that I cannot change and to focus on the things that I can.  I accept that RA and Fibro are part of my life. Yeah, they make life a little harder but they don’t define who I am.  The interesting part is that I never believed that I could to terms with my conditions three years ago, and now, I am standing up with those terms on a daily basis.  Who would have guessed?  

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6 thoughts on “Coming to terms with RA and Fibromyalgia in my life

  1. I am a mother of 4 wonderful children and I have had RA for 20 years and FMS for 10. Some days I feel like f I am in an alien body and yes I realise that I have stopped planning and dreaming because never know if my body will cooperate. I was the person who planned everything down to last detail and could and would do anything I put my mind to. I guess this really struck a nerve today because one of my symptoms is bad asthma and I have not been able to breathe properly for a couple of weeks now. Some days are wonderful and others … well. I try not to scare my children because its hard for them to see their mother in pain and unable to move. I live for the better days and sometimes for the better hours in the day but slowly I am starting really appreciate the good times without regretting the time lost to pain.

  2. Im a mother of 2. I have Fibro on and off since I was 19. I had a spinal surgery of 2011 of may. I had a large cyst in my spine that has nerves in it. My body I accept is not like others. Days my friends say to go out but I am tired from working part time & kids & life. Now my moms been in and out of hospital and that makes me so more tired. My arms are hurting even with the touch. Last night my whole body was aching. In the winter, I feel more exausted. I feel it more in my bones. I get electric shocks all over in my body. I had tests from head to lower part. I have neuropathy in lower part from nerve damage from cyst. It has gotten better from surgery. I ran to drs long time looking for explation. I except it and give up. The nerves have played apart in my teeth. I lost my beuatiful teeth & healthy for no reason just because the severe pain. I have 9 teeth left. I tried to look for reason why each tooth being so severe that pulling them gets rid of the pain. I dont take pain pills. I tried to stay away from all of that. If so bad, I do have it but I get very sick from them. My husband is great & is always there for me. Im taking a long ride to maryland to see urogyn for my prolapse. I hate to go for another surgery but it is like having a 60 year body inside. I feel bad for my family that I have all these issues. I know of course others out there feeling the same. I dont find many drs out there that understand these rare diseases too. They dont listen or want to understand. They go to school learning of the basics diseases. Then there someone like me with this rare tarlov cyst. I been told oh that doesnt cause pain. Well, I decided to be my own advocate. I sent my reports and films to drs who I heard knew about it. I been told not to do this & did. If I didnt, who would help me. Only me. I help me. No one else will. There are drs out there who care & want to listen. It is very hard to find them. I did find a few.

    1. Hello Erin,
      I am so sorry that you are going through all this. I know it is hard because I continue to work fulltime and be a mother to my children. I also take care of my mother who had a stroke a few months back. It is not easy but a girl has to do what a girl has to do. All I know that I cannot change my circumstances but at the same token, I can make that experience good. You are going the right thing by advocating for yourself. I am currently reading a book called, “The Take-Charge Patient: How YOU Can Get the Best Medical Care‏.” It is a great resource for being the best advocate you can be for yourself. I plan on posting a review up of the book in a couple weeks so please come by and check it out. You are not alone in how you feel. You are lucky to have a supportive spouse and like you, I often feel bad for my family but I think that we do not always give ourselves enough credit. You are still there for your family despite your own ordeal. You still work and you are still a part of the outside world and you are there for your mother. Please allow yourself the credit and pat yourself on the back. You are not alone and I am sure that you will find a doctor that will listen. Just keep pressing on. Good luck!

  3. I have been living with RA and fibromyalgia sence at least 2004 and maybe even longer. I feel that My life as I knew it as been taking from me. I To went thru alot of different emotions. I cried alot. Sometime I still cry about it. I take just one day at a time now. I never had a planner except to say things like (we are going hicking on Saturday) Im not able to do that anymore. Now I get the ideal that I woul like to, but I have to wait until Saturday to see how I feel.These diseases work all over the body, Im having alot of problem in my hands and feet. I take alot of different painful treatments. like nerve blocks, epiderals, steroids injections, triger point injections in my back. I use to have fun in life, and now I dont have alot of fun in life. I do the best that I can one day at a time. I got to thinking that there is really only one way to make it thru this. I am a belever in God. And if Im going to get thru this, then I have to ask God for his help. God helps me. He helps me to hold my head up and to except what I have, and I know that he is beside of me all the way. Im praying for healing. Until then I have to try to be positive and dont dwen on these two diseases. I have more good days than bad now. I can say that if you sit around feeling sorry and crying all the time, that it make you feel worst. I go o the ymca and get in the warm pool. You need exercise for your muscles which is really good for fibro. and there is no impact on your joints, And another thing is that if it hurts like my knee then I know that i need a steroid shot. The pool is wonderful just to get in and kick around. Try to eat a good diet. And dont do like I have done so many times, when your body says rest. then rest. When you have ra, your body requires you to rest maybe a couple times a day. I know how it it to not be able to that. I work full time and we are in the middle of a remodel of a house one room at a time of couse, but its been hard. I am thinking of coming out of work, now because I key orders all day and it is really hurting my hands alot, I have started listening to my body instead of my self. I have alway been a worker sence I was 16 years of age, I had to get a workers permit to work at the age of 16. Its been real hard for me to decide to stop working. I love and enjoy doing my job. I have always Had pride in my work and the speed that I could do it and the quality of work that I have been able to dol That has changed. I am on Fmla at work. I am late most every morning now. I have a hard time as soon as my eyes open. There is stiffiness in my back and ancles bottom of feet. sholders, practly every joint. I have a hard time washing my hair and combing my hair. and not to be so blunt but if ther is an early morning bowl movement then the personall care part of this is very hard to deal with. after about 2 hours on my feet, then they are hurting so bad that it is over wheming. and I cant stand it. I know that RA and fibromyalgia hits different people different. Hang in there and listen to your body. And hang with people that dont mind helping you instead of laughing you or putting you down. I dont mean to drag this out. I just wanted to say that I use to be married and sometimes when i would squat down then i had a hard time getting back up. If I ask my husband to help me then he would just laugh at me, and I would feel so bad about it , and even worst because of the disease its self and how there is nothing that I could do about it, and how blessed that he was not to have either of these. He never wanted to help me and he wasntnt in it with me. So I am not married to him any more. I am engaged to a wonderful man that chose to love me no matter what was wrong with me. he is in it with me and he helps me any way that he can which makes it easier and better for me. He doesnt let me give up, He tries to encourage me to keep on going. Dont forget about the pool and walk if you can, do any thing that you feel like, and just like with other diseases live every day like its your last one. Hold your head high, and dont be shamed over things that you dont have controll of. God bless each and every one of you.

  4. Hey Lana! Thought I’d let you know I passed your post on via my blog’s fb fan page. It is well written and I think others should get a chance to read it! Hope you are having a good day today… mine started out slow but is slowly getting a bit bette! Happy Valentines Day my friend!

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