Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
I am new to posting to this group but have been reading it for months. I am a young, energetic, smart, driven wife and mother of 4 who manages a busy call center. Oh, and I have RA. I was diagnosed one year ago this week. I am currently on Remicade every 8 weeks and methotrexate which I take on Friday night as to not interfere with my work, but only to steal away my weekend. I generally have a glass half full, can-do attitude. I have read everything I could put my hands on including the prescribing information for every TNF, DMARD, supplement, etc. When I was diagnosed, I was sort of relieved. Finally, I knew what I was dealing with, but really, I have NO idea what I am dealing with. Everyday with RA is different. At one point I was starting to feel that despite the many side effects, you know, medication for the side effects of my medication, I was moving in the right direction. But am I? I am starting to look better from a clinical standpoint, but not feeling better. In fact, I'm feeling almost as bad as I did when I was diagnosed. Fatigue is on the rise. I resent having my children serve me meals in bed because I can only climb the stairs once and I have expended all of my energy on the career I have spent years building. I resent having to think about what activities I will engage in in terms of what the consequences will be later. I resent having my very dedicated husband and loving mother take care of me, when I can't. I resent the moments that fatigue steals from my life. I resent having all of these wonderful thoughts, but being stuck in this body. I resent the fear of addiction to pain medication. My hands and feet are constantly in pain in addition to the man other points of pain. Having given birth to 3 of the 4 children naturally, this pain is unrelenting, nagging at best. Insomnia has crept in because the pain is so great. On the flip side, I am grateful for the love we share as a family; for my limited mobility; for being in my right mind; for having access to medical care;for being able to feel the warm summer sun;for family and friends;for a God who promises to never leave me or forsake me;for life itself. I have decided, however frustrated I may be, I am living in spite of RA.
Welcome to DS and may you find all the support you need here.
You hit the nail on the head with sharing your fears, resentments, and anger. But you also did so with your joys and gratefulness. The whole point of living with RA is sharing the bad times/things with those who understand, but living for the good times/things. Once you've accepted this disease it is easier to move away from the bad to fully enjoy the good.
Focus on those good things, take your meds as prescribed, keep a watch/journal on your symptoms, and share your pain/thoughts.
Melanye
I wish you well. Do feel free to post here if you have questions or just need some support.
Lynne
You have a lot of resentment and I don't blame you one bit. RA is a thief that steals your life away little by little and sometimes you have to let it take a little so you can give alot to others. Then other times you just take the bull by the horns and shake it crap out of it.
Live, love and laugh
hang in there
I congratulate you for nor letting RA control you. I too was juat diagnosed in Dec'08. I also did my Research and am finally like Lynn Pain free in a long time. I still have a little ache here and there, but nothing I can't handle. You are right, I am living for as long as God wants me to to be here on Earth.
Bigi
I'm new to this too, as I've been reading for a while but was wary about joining in. I've spent the last two years since July 2006 trying to find my own balance of meds and activities that will let me live my life as much as I can. I only have the one son, but I work on an ICU in the DC extended metro area. Long days and busy days at work leave me exhausted too, but the hospital led to my finding my current rheumatologist. Speak up for yourself with your RA to your RD. Your Remicade may be coming too far apart or at too low a dose. I had to give up methotrexate because it made me so dizzy after I injected it for three or four days that I would walk into walls. I actually fell down my basement steps three times. So, my new doc switched me to Arava after the other doc told me for a year that I'd just have to learn to adapt to the methotrexate. Keep living positive and remember not to ask God for more patience - my mother the pastor told me that when we ask for that, God just gives us more things to test us. So now I just ask for strength enough to deal with what life throws at me and comfort when I no longer have the strength. Do not give up on getting the pain under control; I've gone two years and am just finally seeing results. Stick with it; live despite it. :)
Jen in VA