The Long Bumpy Road

By Sher-ber

1 min read

My life in numbers

I have had RA for 40 years. Started when I was 25. I have had 13 surgeries. Life has been rough, my husband did not understand my illness. I had a child with no help from anyone. Went to work when I couldn't hardly walk. I had a good job for 28 years but finally had to go out on disability. But life goes on.

My take on RA

To put RA in a nut shell: IT has an ugly face. It ruins lives and wants you to bow down and let it take over. The good news is that you can fight. You can pull yourself up and not let it take over. I have. Just keep moving, eat good food, rest, laugh, and spend time with people you care about. Remember you are strong and powerful. It's not going away. I have end-stage RA, but I will fight every inch of the way.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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Richard Faust Community Admin
Hi <inline-mention username="Sher-ber" user-id="3236811"/>. Thank you for sharing your story and please know that there are people here who get it. My wife, Kelly Mack (a contributor here), was diagnosed at age two, 45 years ago. I'm guessing you, like Kelly, had plenty of treatments years ago that had little impact (some of them don't even exist any more). I noticed you mentioned end-stage RA and thought you might relate to this article Kelly wrote on living with end-stage RA: <a href='https://rheumatoidarthritis.net/living/living-with-end-stage' target='_blank'>https://rheumatoidarthritis.net/living/living-with-end-stage</a>. Glad you are not letting that phrase stop you from living. Best, Richard (RheumatoidArthritis.net Team)
1. Sher-ber Member
 <inline-mention username="Richard Faust" user-id="3227544"/> I did read her article and she is quite right. It just reminds me of the process. I would give anything to jog, dance around a dance floor or play pickle ball but I know I can't. I just have to find other ways to have fun. Most people that look at me don't know except for my limp. I admit it is hard to be positive all the time. I just try to take it day by day.<img src="/content/images/2024/06/06/eb58d5f6e850ac945b5109e6cc4f54a1_medium.jpg" alt="Just me" class="uploaded-image"/>
2. christine.laaksonen Community Admin
 <inline-mention username="Sher-ber" user-id="3236811"/> we hear you! Taking it day by day is so important, but can be a real challenge. You mention several things that you'd like to be able to do but can't, but I'm curious about the other ways that you have fun. I know a lot of our community members can't do those active things anymore, yet find other hobbies and interests to give them joy. What types of things do you enjoy doing? Thanks again for sharing your experience here with us. This community is here for you. Sending you gentle hugs. -- Warmly, Christine (Team Member)
Sher-ber Member
Thank you, I love a good book. I also love my flowers that I grow on my lanai. Cooking is always fun,you just have to adjust your activities to how you feel. 
1. Richard Faust Community Admin
 Hi <inline-mention username="Sher-ber" user-id="3236811"/>. I saw above where you mentioned that most people don't know about your RA unless they see you limp. Kelly has noted that "I feel for my friends with RA who struggle with an invisible illness that they have to explain to others, who are often not understanding and supportive. While there are things I don’t like about always being visible, at least I don’t have to defend myself and explain that I have pain and a condition that can make life challenging:" <a href='https://rheumatoidarthritis.net/living/stick' target='_blank'>https://rheumatoidarthritis.net/living/stick</a>. Sometimes the invisible aspects can be at least as challenging. For example, another contributor here and friend of Kelly's, Kat, has had serious neck/spinal issues that can't readily be seen. I hope you have people who understand (and know that people here do). I also noticed that you mentioned dancing. It is not often or easy, but there are times Kelly still loves to dance, even though it is in her chair. She wrote about being a dancing queen herehttps://rheumatoidarthritis.net/living/dancing-queen. She's also right there with you on reading and enjoying the flowers on our patio garden (see: <a href='https://rheumatoidarthritis.net/living/reasons-enjoy-summer' target='_blank'>https://rheumatoidarthritis.net/living/reasons-enjoy-summer</a>). Wishing you the best. Richard (RheumatoidArthritis.net Team)
2. Dave B Member
 <inline-mention username="Sher-ber" user-id="3236811"/> I've not been in this battle as long as you have (diagnosed about 9 years ago, onset of the disease about 15 years ago) but I can relate in so many ways. At 73 years old the joint damage is catching up to me and has caused a lot of OA. I spent a lot of years as an avid cyclist and I believe that that has served me well in my battle with RA. (I'm not able to ride any more as I am a caregiver for my wife.) No crying here, though. I'm a blessed man and am enjoying life as it is. I like your attitude! I know how vitally important that attitude is. I made the decision early on that RA would never beat me, regardless of what else it did to me. I've lost a few rounds in this fight but it hasn't defeated me and is not going to. Thanks for the inspiration to fight another day. Hang in there!
CommunityMember1770 Member
What is end-stage RA?
1. Richard Faust Community Admin
 Hi <inline-mention username="CommunityMember1770" user-id="4816510"/>. This article from our editorial team describes the stages of RA: <a href='https://rheumatoidarthritis.net/what-is-ra/stages-and-progression' target='_blank'>https://rheumatoidarthritis.net/what-is-ra/stages-and-progression</a>. I mentioned above that my wife, Kelly Mack, was told she was end-stage many years ago. I find it a most unfortunate designation. While it may be the most severe stage, it is far from the end for the individual. Kelly continues to have a great career, enjoy spending time with friends and family, loves to travel, and overall enjoys life. I don't want to paint with rose-colored glasses - the damage and issues that come with it are real, but the individual can still choose to live and enjoy life and there are still treatments that help. Best, Richard (Team Member)
latoya.juniel Community Admin
This should be pinned so everyone can get a dose of the strength and resilience this article brings! <inline-mention username="Sher-ber" user-id="3236811"/>, thank you so much for being a light in our community. Living with RA is a daily struggle, but your story is proof that we can and will survive as long as we continue to fight. We appreciate you sharing your experience with us and I wish you nothing but the best on your journey. Kindly, Latoya (Team Member)
Jubee Member
I was diagnosed aged 50 but had symptoms for a couple of years before. My first symptoms were painful toes, I presumed it was my shoes and changed them several times. 20+ years later after various medication and different joint problems, my feet are still painful but I understand this to be Neuropathy, nerve damage,, there is also ligament issues. Just wondered which compression socks are the best.
1. latoya.juniel Community Admin
 <inline-mention username="Jubee" user-id="3147015"/> The fact that you've been managing for over 20 years with different medications and treatments is a testament to your resilience. Finding the right solution to your specific needs is a lot of work and takes many trials and errors. Compression socks can indeed help with symptoms like swelling and circulation, but selecting the right pair is important, especially given your specific needs. We have a great article that might be helpful to you as it provides feedback and suggestions from other members on how compression socks have benefited them and what different types they have used. You can read more about that here- <a href='https://rheumatoidarthritis.net/living/using-compression-socks-pain-swelling-feedback-community' target='_blank'>https://rheumatoidarthritis.net/living/using-compression-socks-pain-swelling-feedback-community</a>. And as for your concerns about the attention given by consultants as we age, it’s important to advocate for your health at any age. Your pain and symptoms deserve attention, regardless of age. If you ever feel that your concerns are being dismissed, don’t hesitate to seek a second opinion or discuss this openly with your healthcare provider. Wishing you all the best! Kindly, Latoya (Team Member)
Jubee Member
Due to my age, 73, I wonder jow much of my R.A. pain is old age and wether the consultants bother less when we are old.
1. Erin Rush Community Admin
 <inline-mention username="Jubee" user-id="3147015"/>, I hear you and I know quite a few of our members here can relate! It can be a guessing game, "Wait. Did I sleep weird, is this RA or is this old age?". Best, Erin, Team Member.