"I want to try, but it's just too hard!" These have been the words echoing in my head for... days? weeks? A while, at least. I feel like this disease is consuming my heart and soul. I don't want it to. I don't want to always be concerned about how much energy I have or how bad a task is going to hurt. I hate having to think multiple moves ahead just to make it to work every day and home in order to rest. I wanted to spend the past few days baking and sending Christmas cards, but the days are almost gone and I have yet to accomplish the first step. My hands hurt as if I've been punching a wall and my body doesn't want to move, let alone stand for more than a few minutes at a time.
I have a rheumatology appointment in a couple days. I need to make her understand how I have been feeling and how this is interfering with my life. I don't think the current treatment is working for me. Or maybe it is and I just can't tell the difference between a flare and inactivity. Or maybe I am one of those 'lucky' people who is constantly flaring.
I feel like complaining is all I've been doing. I don't want to live that way. I want to live gratefully, peacefully and happy to live life as it comes. My brain knows I have so much to be grateful for, my heart doesn't always agree. My heart is heavy with pain, worry and exhaustion.
I'm doing my best to 'muddle through' this muck, waiting for the light to reappear. It's just so hard to remember there is light ahead when it's hidden behind all the storm clouds.
Hello, I am so glad to have come across your blog. I love your blog name..a lot. I was recently diagnosed with RA a couple months ago and had a sudden and severe attack of it. I was fine one day and completely crippled the next. I have been on prednisone for 4 months, which has made me able to function. Methotrexate didnt do much and now I am starting Humira (as of today). I know what you mean about feeling the constant flare. I haven't stopped or slowed down...except for with the help of prednisone. Anyway, I do hope you get relief soon. How long have you had this? Have you tried biologics? I am so very curious about everyones experiences with RA--what's worked, and how they cope. I have taken trying to remind myself constantly that God has plans for me that are extravagant, and beyond my wildest dreams..and that RA is a part of that some how. I have been learning to see the good things around me and be thankful for them instead of focusing on the pain and chaos in my body and home (I have 4 kids, 2 have autism and adhd, one severe food allergies...and one is 5 months old!) Anyway, It is good to find people with RA too, and who love God. Thank you for blogging and sharing your experience with us! Be Encouraged, there is always Hope.
ReplyDeleteHi there!
DeleteFirst, I'm sorry I did not respond in any sort of timely fashion, it has been... hard lately.
To answer your questions, I was diagnosed with RA in 2010, though when I think back I had symptoms for years earlier. I haven't tried any biologics yet (for family planning reasons) and am currently taking Plaquenil to combat disease activity and prednisone to ease the pain and swelling symptoms. They are not working that great and I am battling with the decision to wait until I feel the disease is under control or keep trying to get pregnant and worry about changing up my medication regime after.
I hope the Humira does good things for you! Will you let me know how it's been going?
Thank you so much for the comments and following my humble little blog. It means a lot.
Blessings,
Cassandra