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Oh, is there a way?

Eight weeks ago the Doc told me I have RA. I’m 48 yrs old with 6 children only one of them is under 18. I had so many dreams we just brought a house last May with 16 acres of land. It has this space of about 1 acre that would be wonderful for a garden and some fruit trees. But now it really just looks more like a dream. I am a truck driver I have done this for 26 years. I run the same route everyday 800 miles round trip 4 times a week. This is something I have done for 2 1/2 years and now I just can’t seem to get it together. Between all the pain and the fatigue I spend most of my day in tears. My family is wonderful but they are just learning as well it must be hard to go from having a mom who worked so much and still did everything they needed to a mom who can’t get out of the bed and cries over everything. It is hard for me to deal with the emotional mess I am how can I expect them to be able to cope. I can’t manage to stand up long enough to load the dishwasher how can I drive 40 tons of haz-mat down the road for 11 hours at a time. I use to take one little pill a day to control a little high blood pressure now I walk around with a bag of pills and I can’t figure out if they make me feel better or worse. It is hard to understand what you can not see it’s even harder to figure out how this has gone so bad in two months. I know this is all new to me and my family and I pray it gets better and less emotional but it is really hard to see a better day.

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Comments

  • Stephanie Walsh
    4 years ago

    Lenda, my heart went out to you as you shared your story. I am so sorry for your new diagnosis, and so sorry for the daily pain that you are trying to get through and to understand. I have had RA since 2009, and I remember that those first six months were almost a blur, trying to figure out how to do “life” as a wife and mom of two children, and I would have to wait several months to see if a medicine worked, then try a new one. It was so hard. I am truly sorry. Please know that you are not alone in your journey. So many are right there with you. The hardest thing for me is feeling like I have to take care of myself, and I don’t want to let my children down, I want to be there for them…but I cannot do it all. It’s so hard. Please know that there are so many sites that offer support. This one, and inspire.com have helped me the most. You can connect with others who are dealing with exactly what you are. You are not alone. RA is painful, but I’m learning that I have to know my limits, and not let the disease control me, if that makes sense. Dealing with chronic pain is the hardest thing, but there is help. Work closely with your Dr to find a plan. If your Dr is not helping you, find another one! I got a second opinion after being with my first rheumatologist for nine months, and I switched to that new Dr THAT DAY, and have never once looked back. Again, I’m so sorry for your pain. I know this is uncharted territory and feels overwhelming, but just take one day at a time. You can do it, one day at a time!
    Stephanie

  • Kellie
    4 years ago

    Everyone else has addressed the emotional aspects so I will talk about PAIN and fatigue. I was a waitress, I downgraded to hostess, then had to quit altogether. I am on disability. I have had RA for seven years. I have found that when I can decrease the pain, the emotions stabilize a little also. Sounds like you are in a lot of pain. A good step would be to talk with your Rheumatologist about different medications that might help. It can take up to Two months for them to start working, so don’t wait.
    I personally found the fatigue even more disabling than the pain. I would have to put my daughter in my bed with me to watch TV because I couldn’t stay awake past 7. We learn as we go. Good luck to you.

  • Connie Rifenburg
    4 years ago

    Lenda, my heart ached for you while I read your story. Altho all of us have a story about how/when we were diagnosed, it isn’t YOUR story. For everyone you meet on here, it’s so personal – how we learned we had RA, what our family or friends thought about it, how it influenced our job, our relationships, our self worth.

    Some of us, like me, lost jobs, homes, dreams of retirement, plans just got thrown out the window when that diagnosis came and we experienced what it was like to change from what we had known to be ‘normal’ for us, to this ‘new’ sick person.

    Anger, pain, confusion, fog, fatigue, our symptoms were probably much the same as you’re experiencing now. It will take time, and it takes help. Don’t let anyone tell you different. You will learn to ask for help -maybe like me- for one of the first times in my life. I was always self sufficient. A planner, a doer… until this disase happened. I had to learn a different approach to life.

    You can find good advice from people on this website. Stories that you can relate to and people who know what you’re talking about and understand the frustration that goes along with dealing with this disease and all the side effects.

    To me, it was like a grieving process. I had to accept the change of what I thought I was capable of and try to find other things I could still do and be happy. I NEEDED someone to talk to professionally. I am lucky I found a counsler that had MS and she completely understood the different needs of a person with a chronic illness.

    After she helped me get past what was my current crisis, we began finding a new me that I could enjoy and who could enjoy others. It wasn’t easy for me. But gradually, I have improved.

    I hope you will find a good doctor. One you can relate to and that listens to you without judgement. You really can feel better. It will most likely take longer than you thought to find the best treatment and to begin to feel better. But you need to know that you WILL get there.

    If you are unable to work, social security disability is available to you since RA has become a ‘fast-track’ disease and your doctor should know how to fill out the forms to get this financial help for you.

    I was 57 when I finally had to give up working. I am 63 now and for the first time, I’m in some type of remission(?) and it’s like childbirth, when the pain is over and time has passed – you forget the terrible pain you experienced. But you never forget the experience.

    This year, I have gone a whole month without a dr. appt. which has not happened in 7 years! It may not seem like much, but can you imagine that I never had a week that I didn’t have a dr. appt of some kind in 7 yrs? Now that’s worth boasting about!

    Just know that you will get past this – in YOUR journey – and you will one day write to someone else who is newly diagnosed and try to tell them that they will find THEIR way too in time.

    Sincerely,
    Connie

  • Lenda Robertson author
    4 years ago

    Thank you so much Connie, thank you for sharing your wisdom and time. Some one to talk to who understands what RA is, is a big help all by itself.

  • Lenda Robertson author
    4 years ago

    Thank you both for the words of encouragement and I will read all the articles.

  • Andrew Lumpe, PhD moderator
    4 years ago

    Lenda, rats-it’s so hard to hear another story of recent RA diagnosis and how it’s impacted their life. There are stages of grieving that people go through upon being diagnosed with a chronic illness. This article describes it – http://rheumatoidarthritis.net/living/grieving-part-living-chronic-disease-like-ra/. Hang in there, develop support systems, and foster a strong communicative relationship with a good doctor. Most of us find ways to cope and adjust and I hope you can do the same. Thanks for sharing your story as it’s a good way to vent a little.

  • Jenn Lebowitz
    4 years ago

    Hi Lenda,

    Sorry for your recent diagnosis. Thank you so much for sharing your story with us. Please know you are not alone. I thought you might appreciate these two articles – one is on fostering hope with RA: http://rheumatoidarthritis.net/living/fostering-hope/ and the other is about people who have had RA and still accomplished many dreams: http://rheumatoidarthritis.net/living/we-are-not-alone/.

    Most importantly, please know you are not alone. We welcome you to our community and encourage you to share your thoughts, feelings, and/or questions here any time.

    Thanks again for sharing your heartfelt story with us. We’ll be thinking of you and your family.

    Warm Regards,

    Jenn (Community Manager, RheumatoidArthritis.net)

  • chris
    4 years ago

    Thanks for the articles Jen. I am planning on reading them. And to Lenda, please know how we have been where you are now. And we are here to support you! Please continue to reach out. I know how much it helps me. Wishing you all the best.

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