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You are here: Home / health / Honestly RA: Understanding What It’s Like to Live with RA

Honestly RA: Understanding What It’s Like to Live with RA

June 13, 2017 by Momstart 17 Comments

This post is part of a paid sponsorship by Regeneron and Sanofi. All opinions are my own.

Many years ago I was diagnosed with “Rheumatoid like Arthritis”. To be diagnosed with RA there has to be RA factor in your blood stream. I had all the other symptoms but didn’t have that factor in my blood yet. My doctor said he couldn’t officially diagnose me until my symptoms got worse. I’ve taken all kinds of different medications for the arthritic pain. Something will work for a while and then will just stop working and I’ll have to try something else. I was also very fortunate to be in remission for a while. My pain was very minimal for a while, but these past few months it’s been very difficult.

clip_image002 It’s really hard to live with the kind of pain that no one can see, which is one of the reasons that I’m working with Regeneron and Sanofi. I want to help raise awareness for RA and it’s been great for me too. I’ve learned more about how others are affected by RA and that I’m not alone. They did a survey where they fielded 1,004 self-reported RA patients (Honestly RA) to uncover the daily struggles, frustrations and triumphs of what it means to live with RA. Many of the statistics resonated with me.

clip_image004

One, I would love it if others could see how I feel. “90 Percent of people with RA agree or strongly agree that it’s frustrating when others don’t understand their level of pain.” I don’t even want my kids to feel the kind of pain I have sometimes, but it would be nice if they could understand it’s harder for me to keep up with them. Going up and down the stairs of our house is so hard, but to them it’s a simple request mom can you go get my jacket for me I’m cold. And I want to do things for them, but I have to remind them, I can’t. And it breaks my heart. “Nearly half (48 percent) of people with RA cited difficulty with chores such ass vacuuming or yard work as motivating factors in talking with their doctor about their current treatment regimen.”

image

Other statistics say that they can count on their health care provider to lend a hand. I remember mine was good at listening and never doubted me. It was hard being diagnosed at such a young age because so many people don’t believe that I have arthritis. “90 percent of people with RA feel their doctor or HCP listens to what is important to them.” “90 percent of people also feel their doctor or HCP involves them in the treatment decisions which is important.” Having an illness that makes you feel so isolated and misunderstood is really hard. It’s nice to learn that I’m not alone and that others feel the same way I do. I have hope that my good days will increase and I’ll be able to tackle those stairs.

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Comments

  1. candy says

    June 13, 2017 at 1:33 pm

    So sorry you are having to deal with this painful disease. I have a friend who is battle this disease and she is finding it very hard to be as active as she was before.

    Reply
  2. Julie Wood says

    June 13, 2017 at 2:04 pm

    I know that arthritis is so debilitating and painful.. I have arthritis and it is hard to deal with on a daily basis. I am glad that my family supports and helps me and I am praying for you!! I am so sorry you have this disease!

    Reply
  3. Stacie @ Divine Lifestyle says

    June 13, 2017 at 2:42 pm

    That is terrible. I have a friend with RA, and it’s so hard on her. The pain is terrible, and the medicine that she takes to help weakens her immune system.

    Reply
  4. Vera Sweeney says

    June 13, 2017 at 3:05 pm

    I can’t imagine dealing with such a painful chronic condition The medications to ease the pain are almost as hard on the body at times as the disease!

    Reply
  5. Jennifer Van Huss says

    June 13, 2017 at 4:39 pm

    I am so sorry that you suffer with you! It is hard when your problems are visible to the outside. I have celiac disease and so many people try to sneak flour into my food and think well you won’t have an anaphylatic shock it doesn’t matter. The real results are hours and hours of agony and one step to cancer. Thanks for this info! The more you know the better off we are!

    Reply
  6. Mary Edwards says

    June 13, 2017 at 6:45 pm

    How awful that you have to go through such terrible pain. I hope they can find a medication that is more effective for you for a longer period of time. Or better yet, another remission would be great!

    ((Hugs))

    Reply
  7. Dogvills says

    June 13, 2017 at 10:30 pm

    I’m sorry that you have to go through this. And it’s bad that they can’t diagnose you until it gets worse. Sending prayers your way.

    Reply
  8. Victoria Heckstall says

    June 14, 2017 at 1:13 am

    I’m so sorry that you are struggling in this pain. I know someone who need this tips, this could help her.

    Reply
  9. Melissa Dixon says

    June 14, 2017 at 5:13 am

    MY mother in law suffers and while she has found some things that work for her, it is hard to maintain. It can be crippling and I hope they are able to find a cure.

    Reply
  10. Rosie says

    June 14, 2017 at 6:36 am

    Mom mom was crippled with RA at a young age. I remember there were times my dad had to carry her. Back then, they only med for it was aspirin, she took up to 16 per day, per the doc. She had an operation, and there were a couple of years she had therapy and daily exercises to be able to walk. She had to take a stool with her everywhere. When she got older, it was a little better.

    Reply
  11. E H says

    June 14, 2017 at 10:48 am

    This is a tough journey. I have translated before medical texts about RA. I am so glad there are pharmaceuticals/medications to help!

    Reply
  12. Kelly Hutchinson says

    June 14, 2017 at 12:07 pm

    I am sorry to hear you struggle with living with RA. My older sister has RA and it is so painful. It hurts to see her when she is experiencing a flare up. Thank you for sharing your story!

    Reply
  13. Chubskulit Rose says

    June 14, 2017 at 2:35 pm

    My Dad used to be in pain caused by RA and he would always told us that he would never wish it for anyone to feel.

    Reply
  14. Shannon Gurnee says

    June 14, 2017 at 7:06 pm

    Rheumatoid Arthritis sucks! My stepmom has it and I feel so bad for her. I wish there was a treatment that could help all of the time.

    Reply
  15. Oyinkan Ogunleye says

    June 15, 2017 at 1:46 pm

    Wow! Sucks that you have to deal with this. Glad that you’re pushing through.

    Reply
  16. Mimi Green says

    June 15, 2017 at 8:35 pm

    This sounds like a really tough thing to deal with. I don’t know anyone with RA but I do know others that suffer from internal issues that aren’t obvious by looking on the outside.

    Reply
  17. Echo says

    June 16, 2017 at 7:09 am

    My mom was recent;y diagnosed with RA and I was recently saddled with Fibromyalgia. Invisible pain is so frustrating! I hurt so bad, but no one can see it!

    Reply

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