caret icon Back to all discussions

Trying to find a new way to live with RA.

Hello, I’m new to this community and was diagnosed officially with RA a couple months ago however I have been dealing with the pains and effects for longer then that. ( I was hoping it was just something that would pass so I waited far too long to go to the doctor ) I have 2 toddlers who keep me going and give me a reason for waking up each day. My husband is great and works so hard but doesn’t really understand my struggles with each day wether it’s due to flare ups or horrible fatigue. I finally found an evening job being a line cook and was hopeful I could do the job but I could only last a Day and my RA took over. I’m feeling really pathetic that I could only last one day and that night after and the next day I couldn’t hardly walk because of the flare up in my ankle. I’m starting a new medication but the doctor said it could take a few months at least for any effects to start happening. I’m sorry this is so long, I’m really struggling mentally and physically right now. The physical I’m used to it’s the mental that’s becoming very hard, how did you cope with dealing with RA in everyday life? Any tips on dealing with flare ups? Thanks for reading and again I apologize for the length.

  1. Your note is just the right length. Thank you for writing.

    I know when I was diagnosed, I had to come to a new understanding with my body. Until I got stronger, felt better, and the medications were working, I had to increment my life. At first, it was tiny increments. I would stand on my feet for an hour and sit for 20 minutes. I know as a restaurant worker that is likely not possible.

    I suggest thinking about chucking your time. Chuck time with family and chunk it at work. It be necessary to seek accommodation with your employer. This is a tough condition. It will come under control, but it will not occur immediately. ............ rick

    1. Thank you so much for your reply. I actually left that job, I had to decide wether I could still care for my kids during the day after hurting horribly after working and ultimately decided I didn’t want to risk taking myself from my kids mentally and physically anymore then I sometimes am. I will look for another job but maybe not one as demanding for now until this medication starts to work.. because like you said it will come under control it just needs time. Thanks so much again!

    2. My initial RA was so bad that I was in a wheel chair. It took quite a while to get it under control. I did file for disability because there was no way I could work again. I was an operations manager for an import company in the Seattle Washington area. It took large amounts of energy and I traveled too at times. I did not want to stop working but the fatigue and pain were just to much. Perhaps this might be an option for you at this time. It does not have to be permanent. You will get it under control with good care. I got out of the wheel chair. I admire you and all you do and having to manage this difficult disease.

  2. I'm so sorry this is happening for you. Trust me when I say that all of us understand what you're going through.
    Having RA without kids is a huge challenge. I can't even begin to imagine how hard it is WITH kids, let alone small ones.
    This is the time to let family and friends support you. It's like the oxygen mask on the has to take it first in order for the others to survive. So ask for help until those meds kick in. And if you can, explain to the employer that you regretfully need a medical leave.
    Here's something else: don't worry about the clean house. Do what you can without taxing yourself. No one ever died from dusty furniture. Ironing? Forget it. Just get the things out of the dryer when the dryer turns off.
    Give yourself permission to rest. LISTEN TO YOUR BODY.

    1. Just out of curiosity........did the symptoms start after childbirth? If so, not at all uncommon.

    2. hello! Thank you for responding, I did decide to leave my job. Just had to prioritize what energy and strength I have needs to go to and my kids definitely come first. One thing I didn’t mention is I don’t have any family where I live. All of my family is 1200 miles away and my husbands family is not so supportive/ helpful which is so different from my family so that’s been hard to adjust to as well. I do need to work on as you said not worrying about cleaning all the time. Sometimes I just have to leave dishes or toys laying around because of how I feel but I almost always push myself to clean as much as possible so what you said I definitely resonated with. Oh and oddly no I had my daughter in 2018 and my son in 2020 but my symptoms didn’t start until mid 2020. I do wonder sometimes if pregnancy started it though lol

  3. There's a long history of RA coming into the picture after a pregnancy, causing some to think that there might be a hormonal relationship.

    You're going to have to nap when the kids nap. Give yourself permission. And don't feel badly about eating take out or frozen foods. Who doesn't like a good pizza?

    Above all else, PACE yourself.

    May I ask what drugs you are on for the RA?

    1. Wow that’s interesting I didn’t know that. My doctor didn’t seem to concerned about figuring out when it may have started or what started it just wanted to get me started on medication to control it because of how severe my flare ups were getting. I have been on Prednisone for a while and just started Humira. I’m hoping the Humira will work so I can get off the Prednisone but my doctor did tell me the Humira could take 6+ months or longer to really feel any difference if it does work for me.

  4. Is your RA being managed by a rheumatologist? Or a family doctor?

    1. A rheumatologist, my family doctor is horrible lol

    2. We're all different. Humira kicked in for me within a month. Were you on Methotrexate before the Humira? If so, are you still taking it, though at lower doses? It gives a "kick" to the Humira.

Please read our rules before posting.