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Woman sitting on the edge of a canyon that she has just climbed out of

Unstable Health

This year has been like climbing out of a deep canyon that I didn’t know I was living in. Last fall, I started a new medication for my rheumatoid arthritis after the previous two not working well or at all, which added up to two very difficult years. By the time January arrived, I was feeling so much better and thought: “Well, this is it! This is great!”

Improvements with new RA medication change

Less pain and fatigue

But I had no idea. From here, January looks pretty dismal! I am feeling much better and it has been a nice improvement over time. I have less pain, less fatigue, and happier joints. For me, the decline in fatigue is possibly the most appreciated because, somehow, I could cope with the other symptoms. Not having the energy to get up and get through my day was truly a significant struggle that had me wondering if I could keep up anymore.

Ability to save sick leave

Even the last two months have been huge. I’ve actually been able to save sick leave. Wow! To be able to feel that I will likely be OK the next morning is a nice thing when I go to sleep at night.

Enjoying travel and canceling plans less

Last month before we left on a huge trip I was pre-apologizing to my husband for ruining it. (Don’t worry! It was a great trip and I didn’t have a single flare day!) I was just so worried about having a bad day (or several) and having to cancel plans that we had meticulously made months ago. Richard is much more forgiving and accepting of this than I am. I get so mad at my RA, so frustrated. But he just says I need to take it easy and take care of myself. (My rational mind says he has the better perspective.)

The mental toll of RA’s unpredictability

The previous two years of health instability have been difficult to live with. I’ve had to cancel more plans than usual. I’ve had to cut back on activities I enjoyed. Slowing down has been good for my health and recovery, but it was hard to do, except for the fact that I just had to make that choice for myself.

Uncertainty made me feel worse

Maybe not knowing if I will be able to make my plans on the next day is as bad as feeling awful with RA. Sure, feeling awful is… awful! But not knowing when there will be an extraordinarily bad day, when I’ll have to shift or cancel plans, when I won’t be reliable… that really takes a mental and emotional toll. It hurts my heart to miss plans that are important to me, to loved ones.

Cherishing the good days

Appreciating the few good days when my RA was bad

During this period, I didn’t have many good days. By this, I mean days where I felt pretty good and wasn’t struggling. Usually, every day was a struggle — to get up, to summon energy, to put aside pain, to focus on what I wanted to focus on instead of the RA. This meant good days became extra special, very treasured. It could be a sunny day, cloudy, rainy, cold — didn’t matter. If I felt a little better, it was an honest treat.

I tried to focus on little things that made me happy, to take it one day at a time because I never knew how I would feel the next day. I would make plans, but know that I may not be able to fulfill them (but I would try!).

Looking forward to more good days in the future

Now that I have had many good days strung together like a beautiful string of pearls, I realize how deep my canyon was. I’m still climbing, but I’ve reached high enough the sun is shining on me and I feel encouraged that perhaps my unstable health is behind me — at least for a time. For now, I am just going to enjoy it.

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

  • mseelhoff
    4 months ago

    OMG, that was me too! In the fall I started Kenzara. It worked well at first. Each shot it became less effective. By January I was like a newborn foal getting up for the first time. I just know when I get up I can’t take my time because I have a 1630 lb horse waiting for me! He depends on me! Finally in March the exhaustion was too great. I could hardly push the wheelbarrow the quarter mile after cleaning his stall. My sacrum was screaming and I seriously thought my hip bone was going to pop threw my skin. I am too thin, so you can see all my bones. When my rheumatologist saw me in late March she agreed it was time for a big change. Remicade. First thou I had to clean my system of all drugs. Nothing for 3 weeks. Nothing. No asprin, Ibuprofen, Tylenol or prednisone. I truly thought I was going to die. When I started Remicade it was instant relief! Know I am done with the load doses and in August I am trying 4mg to see if it will last 2 months. I will say when the Remicade wore off at 4 weeks I panicked, I thought what I am going to do I can’t stand being like I was with no meds, and then something kicked in and the pain is manageable again. It is truly a mental roller coaster!

  • Kelly Dabel moderator
    4 months ago

    Thank you so much for sharing your story and experience mseelhoff. So glad to hear that you’ve found some relief finally! Hope you are able to spend time with your horse now without as much pain. Wishing you continued relief ahead. Best, Kelly, Rheumatoidarthritis.net Team Member

  • Lawrence 'rick' Phillips moderator
    4 months ago

    I am so glad you are doing well. or at least better than January. I feel so much better riding my bicycle and I never dreamed that was possible in January. So i really do understand the pure joy of doing better. Keep up the great progress.

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