I’m not ready for this…

I’ve been lurking around this forum for months so instead of continuing to isolate myself I figure I’ll try to let someone in.

I was 37 when I was diagnosed with RA. I woke up one morning and felt like my phalanges had been forged in a fire. I could hardly move. I had NO idea that this was the beginning of a journey that was never going to end. After a few days like this I acted quickly and went to see my PCP who referred me to my Rheumatologist where he confirmed exactly what I didn’t want him to: Rheumatoid Arthritis. WTF? “I can’t handle this.” Is a sentence I still use every single day.

I don’t say this for pity or sympathy but only to establish state of mind. A year and a half before my RA diagnosis I was diagnosed with an Oligodendroglioma, brain cancer. All I kept thinking was how could I possibly manage another incurable disease? With these 2 diseases, one has to be put on hold to work on the other. So, for right now cancer is on hold (I still have frequent checkups) and I’m as focused as I can be on dealing with this b**ch called RA.

RA has ruined my life. I gave up a career that I loved, my children don’t live with me anymore because the disease is so unpredictable and what’s best for my children is THE most important thing for me, I continue to cancel plans with friends and family so much that I only get the “pity invite” anymore. You know the one where they ask if you want to go with them while literally on their way out the door? Knowing damn good and well that they really don’t have the time to wait for you to get ready. I know it’s 100% about them but that doesn’t make me feel any better.

RA has been very possessive with my body, my time, and my energy. RA HATES change. RA has ruined my hair, my skin, my eyes, and because I was on prednisone for over a year I gained 100 lbs. and I sweat like a stuck hog. I don’t recognize myself. RA wants me all to its self. When I try to lay down for bed at night the only thing laying with me is RA. I can’t imagine many men willing to share that bed and that burden.

I feel people don’t understand. They look at me and just assume I’ve become lazy and maybe I like donuts a little too much. I’m sick of the suggestion that “a little exercise” will fix the problem (really? I didn’t know.) I considered myself an athlete for a long time. Now, folding a few loads of laundry will bench my hands for days.

I would give anything to find people who understand me. This is a lonely life and RA is a very lonely disease. I’m not completely hopeless. I do believe that one day I’ll find a med or a combo of meds that will help me find my way to that illusive remission people keep talking about. I just wish it would happen sooner than later so I can work on this new life I’ve been given. I have so many plans for myself and my kids.

I don’t need a miracle. Just a chance.

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.

Comments

View Comments (11)
  • ItsMe
    1 year ago

    Omg I’m feeling for you. That’s my story too. Wish I could give you a big hug and listen to you sometimes that’s all you need. I to have had my world tipped up side down and I want the old me back. I struggle to except that me won’t be back again. I have no one to talk to. No one wants to listen so I just keep in side. I don’t want to kill myself but I don’t want to live like this and if this is it farrrk the future is not looking good. I’m sorry I can’t write anything positive I just want you to know I understand what you are going thru and it’s ok to feel like you do. It’s hard to ask when your feeling so down but on those days when things aren’t so bad call to those angels loud and clear for that chance your looking for cause they are listening and it may not be the miracle we thought we wanted but a miracle will happen. I hope things get easier for the both of us. You are strong….bless you. Chris

  • CaseyH moderator
    1 year ago

    Hi Chris,

    Thank you for sharing these feelings with us, and please know we’re here for you. I’m so sorry to hear that things have been so challenging and frustrating, but we’re so glad you’ve found our community. We’re all behind you and want you to feel supported and cared for. I know you feel alone, but please know there are resources out there, including in-person support groups, hotlines, and counseling for these feelings. Your doctor may have a list of these. You can also call the Arthritis Foundation at 1-800-283-7800. More information on these feelings, and the options for them, can be found here as well, https://rheumatoidarthritis.net/living-with-ra/managing-emotional-problems-and-stress/

    We commend you for reaching out to your fellow community members and providing support, even when you are feeling alone. Thank you again for sharing, and we’re so grateful to have you as a member of our community. Please keep us posted, we’re always here.

    Best, Casey (RheumatoidArthritis.net Team)

  • JJ
    1 year ago

    Regarding my previous post: Please accept my apology for my spelling errors and repeated statements. I realized that I wrote the previous post throughmany long awaiting tears and should have reread before I hit send! Sorry

  • ItsMe
    1 year ago

    Don’t ever be sorry

  • JJ
    1 year ago

    Just saw your post & wish I found it sooner….I too was diagnosed with RA at age 32 (36 yrs ago) which literally appeared overnight and just after I lost my Mom & Dad, and recently became separated. I was alone raising 3 children under age 11. I and am now 68. If I wrote here what followed in my life AFTER my diagnosis and tough life events , it would read more like a horror story. I’ve traveled to California and done anabiotic therapy I have done unsuccessful experimental treatments which nearly killed me and my second husband, an RN, after 15 years left me and took the only savings I had. I didn’t even have enough for the rent and was so sick that I was bedridden. . I didn’t even have enough for the rent and was so sick…. I can remember I just wanted to leave this world.Yet while I laid there alone I realized I had to options…lay there and die or fight. I learned to smile through the horrific and very lonely pain we all endure every day, I trained to be a hospice volunteer. I realized that doing something for someone else got me out of my own dark place. I continue t I struggle daily, just stopped Orencia after 12 years and am now looking for a new drug to keep me upright & out of bed. I MUST work now any way I can to pay the bills & and have had my share of surgeries, IV’s, hospitalizations and emotional & physical pain. Even as I write this I desperately need a foot fusion due to multiple fractures from the ravages of RA, yet I smile every day and believe it or not I am grateful everyday….I practice gratitude! this didnt happen overnight but I promise you that with changing how you approach RA and life with it can help make you a happier person. Attitude and hope is sometimes all we have. I do very much understand you!!

  • arizonaspoonie
    2 years ago

    Thank you Erin so very much

  • arizonaspoonie
    2 years ago

    Thank you for posting it was inspiring to me and I could relate with much of what you said I’m brand new today. I’ve walked away from all other social media because very few understand this life changing invisible disease. Your comment about isolation. Is one I share I can’t believe this is now my life. Family and friends leave in time it seams . I’m looking forward to this forum.

  • Erin Rush moderator
    2 years ago

    Welcome arizonaspoonie! I am so glad you found this community! Living with a chronic condition like RA can seem very lonely at times. I hope you do have some people in your life that will stick by you through the good and not-so-good days. And please know you are welcome here anytime! Thank you for commenting and please know you are not alone here. Best, Erin, RheumatoidArthritis.net Team Member.

  • Eebtool
    2 years ago

    Jen78, please do not give up. This may sound a bit out of left field, but you and other people struggling with RA are a bit of inspiration to me.
    My RA is not near as bad as what you describe but I am very much aware that one morning it could go downhill for me. Knowing that you and others are surviving and still looking forward keeps me grounded to reality.
    I truly and honestly hope that you are able to find relief and are able to get back to the life you want for you and your children.
    Best wishes, Edward.

  • Richard Faust moderator
    2 years ago

    I’m sorry to hear that you are struggling Jen78, but glad you have come to a place you can get support and information. Sometimes the emotional aspects of a chronic condition like RA can take a backseat to the physical, but they are very important. This article from our editorial team looks at some of these issues https://rheumatoidarthritis.net/symptoms/depression-anxiety-and-emotional-problems/.

    Please know that you are not alone and that you can always come hear to vent or for support. Your doctor may also be able to help with finding a local support group of like situated individuals. Please keep us posted on how you are doing. Best, Richard (RheumatoidArthritis.net Team)

  • Erin Rush moderator
    2 years ago

    Thank you for finally posting, Jen78! And please know that in this community, you ARE understood! I think so many of our members can relate to what you shared. RA can definitely be a “take no prisoners” condition. And dealing with two chronic conditions? Goodness. Anyone that gives you a hard time clearly has NO idea how tough you really are. Chronic conditions can be so isolating, for many reasons. If you haven’t read this already, I thought you might relate to this piece written by one of our members. I will confess, it is a favorite of mine — https://rheumatoidarthritis.net/stories/a-letter-to-my-family/. And, as a Mom, I have to say that you sound pretty awesome. Sometimes, doing the best thing for our kids can feel like tearing our own hearts out. It takes quite a Warrior Mom to be willing to sacrifice her time with her kids. I hope you give yourself credit for the tough decisions and the fighting you do every single day. Please know that you are not alone here! This is a community that truly “gets it” when it comes to RA. And, on a side note, I think you are an amazing writer. You have a great way with words and your feelings and wit come right through the screen. That’s a gift! Thank you for taking the time to come out of lurkdom and post. I think your words added quite a lot to our forums. Best, Erin, RheumatoidArthritis.net Team Member.

  • Poll