Ok, so for once I think I'm going to try something a bit different with this post. Instead of my biting commentary on the way society and the medical world views we RAers, I'm going to try a bit of realism. I want to share a conversation my husband and I had somewhat recently, maybe a month or so ago...and I want your commentary. I want to know if our conversation rings familiar to any of you...
I guess it comes down to one thing. We all just want to see how other people are handling IT, the RA because for one thing, it gives us a barometer for how hopeful vs. how pathetic we sometimes feel. But also we want to see how others are handling IT in case we can learn from them.
Please do not attempt to learn from the following conversation anything except that I too have moments of weakness:
Hubby: Honey, you are doing so well. You manage to get up every day despite debhilitating pain and stiffness and still remain the most positive person I know.
Me through tears: You don't get it. The ONLY reason I do get up every day is for you and our son.
Hubby: But that's ok because you get up.
Me through worse tears: You don't get it. That's the point. I don't want to.
Hubby: No! The point is that you DO...because if I were you, I don't know if I would.
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Yeah for supportive husbands!!
ReplyDeleteYes, it rings familiar. I've had conversations very much like that. Lately, I've had a lot of hopeless moments. Thanks for the reminder that this is just part of the deal sometimes.
ReplyDeleteSometimes I think my husband doesn't get it at all and a similar conversation happens and I am reminded even though he never can understand the pain he is so incredibly supportive. Makes up for the ones that don't get it and aren't supportive. I think a moment of weakness can be good it reminds us we aren't alone when we think we are.
ReplyDeleteAwesome that your husband is supportive. Yes, we still get up in the morning, whether or not we feel like it. But it sucks that your disease isn't under better control; it shouldn't be this way.
ReplyDeleteGo hug him right now. Tell him... Thank you.
ReplyDeleteHe gets you.
Hugs
T
Sweet! Thanks for sharing! Keep getting up!
ReplyDeleteI was DXed with RA at age 35 and I'm now 50. I almost think there's a pressure vortex currently because I've heard several stories lately of extra pain and discomfort. I'm flaring up real bad in my hands. My lefty has about closed down 100% in the last couple weeks and it's freaking me out! I'm sleeping with rolled up paper towels stuffed in it to help it "rest" and so I don't clamp down so hard.
ReplyDeleteI too have had that feeling of wanting to surrender. I'm tired. I hurt. I'm tired of hurting. Rinse and repeat.
I too am so very lucky... I have a GREAT man that loves and understands me and my RA body. But all the love in the world doesn't make the hurt stop does it?
The good news for you RA newbys is after 15 years of full on RA I'm still working full time and very active. I've put on extra pounds which is no good but I walk allot! I even went to NYC over last Thanksgiving and walked from 37th st to 72nd st! My only advice is KEEP MOVING! and be patient with yourself and those that love you. Believe this... RA is even scarier for the spectators. :) Healing love to all!
It does sound familiar. I feel bad because I'm married to a man 10 years younger. To me, he thinks, "I can't believe I married such an old lady!" But he tells me that's not true and is very supportive. After a year of no flares, it's caught up with me again. Everyday it's pain. No more breaks.
ReplyDeleteI just found your blog and it does sound familiar. Maybe because I have had the exact same discussion with my husband. Thank heavens for supportive husbands.
ReplyDeleteSending you a big hug. This one broke my heart. :( You really amaze me, SB. I don't know how you do it. I'm so glad you have a husband that loves and adores you. I can't imagine the past couple years of my life without my man. Happy mother's day, sweet woman. You are in my heart and prayers.
ReplyDeleteBeing strong is important!
ReplyDeleteI just discovered your blog, after reading the latest post at the RA Guy and learning that you've passed away. I'm so sorry. For you, and your family, and for the life that was taken away from you. I'm sorry that I only get to know you through your old blog posts. I was diagnosed with RA 3 months ago. Thank you for starting this blog. Thank you for sharing your experience. I will never forget you, RA Superbitch.
ReplyDeleteRest in Peace Superbitch! My deepest sympathies to your husband and son. May you be pain free on your new adventure.
ReplyDeleteYours was one of the first blogs I ran across after being diagnosed...you made me laugh, you told it like it is, and I'm soooo gonna miss you. To your husband and son: Please know that she touched many, many lives in a positive way and will continue to do so here on the net. My heart goes out to you both...Jeanne
ReplyDeleteI'm so sorry to hear the sad news. Rest in peace.
ReplyDeleteRest in peace, SB. Your words were eloquent, sometimes harsh, and always heartfelt. You were a strong inspiration and source of hope for many, many people who also cope with rheumatoid arthritis, but most of all, you made us laugh out loud. There is no better healing than that.
ReplyDeleteMy best wishes and care for your husband and son.
So very sorry to hear the sad news. You touched many people’s lives and will be truly missed.
ReplyDeleteMy deepest sympathy to your husband and son, I am so sorry for your loss and will keep you in my thoughts.
Rest in Peace 'Superbitch', may God keep you and guide you into the gates of Heaven. Free from Pain, suffering, angusih, despair and the beast of a disease Rheumatoid Arthritis!!! No one knows the suffering this disease causes, the pain in unbearable and intolerable-now you are resting in peace sweet Angel. You deserve all the beauty Heaven has please watch over all of us fellow RA'ers with those super powers of yours. Prayers to your Husband and Son. May they keep your Journey alive.
ReplyDeleteSB you will be missed. You touched the RA community with your funny honest blog. The CJ people will really miss your sharp comments and support. RIP and finally pain free.
ReplyDeleteTo your husband and son my deepest sympathy.
Mary
I knew you when you first came to the creakyjoints boards. I will miss you terribly, and I weep for your family to have lost such a loving and sweet soul. Rest in peace, my darling girl.
ReplyDeleteI'm shocked! I kept waiting for your next post and it never came. This has hit a little too close to home and I'm so sad. Best wishes to your husband and son. Send your angels to watch out for the rest of us who still have to fight this disease without you. You will be missed!
ReplyDeleteI can tell you that the brave front that you are posing is great thought and every patient who goes through RA appreciated the effort.You husband and you are trying your best to pull it through...just consult good specialists and take proper medication I am sure you may be better soon.
ReplyDeleteI am diagnosed with a chocolate cyst concerning four cm. typically I even have simply somewhat pain as you're tired and typically seldom throughout my amount robust pains.
ReplyDeleteThe doctor same to tried to urge pregnant and if when 9month i'll not be pregnant then we will do a surgery. I even have no kids nevertheless. What does one sugest? power precision