Ups & Downs

RA Guy Adventures of RA Guy 12 Comments

Life Has Its Ups And DownsUsually, the frequency of my blog posts is a pretty good indicator of how I am doing. When I write less regularly, I’m usually feeling better. When I write more regularly, I’m usually feeling worse. The reason for this is twofold. First, putting my challenging experiences down in words helps me process them and cope with them. Second, when I’m not doing so well I become much more bedridden, and am thus limited to certain activities which involve my computer, books, and an iPod.

Anyone who has been keeping tally over the past week would have noticed a considerable increase in my online presence, followed by an almost complete drop-off over the past couple of days. I’d love to associate this with a rapid improvement of my condition, but the exact opposite is true. Things have been so difficult that I have not even been able to blog. In my 60-Second Guide to Rheumatoid Arthritis, I liken the pain of RA to being run over by a Mack truck. Allow me to extend the metaphor by saying that yesterday was a multiple-vehicle collision on a Los Angeles expressway.

My worst episodes (and by episode I am referring to anything above and beyond the usual chronic pain and inflammation), which on average happen once a day, have now started occurring two to three times a day. On good days these episodes last about half an hour each, on bad days they can last up to three hours each. If you do the math, we’re talking about nine hours (three episodes times three hours) of extreme pain and disability. Add in the almost twelve hours that I’ve been sleeping (fortunately, I have been able to sleep), and that leaves me about three hours in the day.

I’m barely recovering, emotionally and physically, from my previous episode when the next episode already starts to approach. My ride on the rheumatoid arthritis roller coaster has once again become all too real.

But like I said, even though things are overwhelmingly difficult at the moment, not everything is bad. I am able to sleep, which is a good thing. I do have a few hours of each day to do stuff that I enjoy, like watch television, read, and surf the Internet. I have been able to bathe and dress myself without any help (when I can do this, I feel so…well, successful). And despite the endless nature of my illness, I remain bright-eyed.

Yes, I continue to get knocked down more that I might wish, but all this means is that I just have to pick myself right back up. True, I might not always be able to do so physically, but I will always be able to do so mentally and emotionally…and this counts for a lot.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

Comments 12

  1. talltennisgal

    RA Guy, I know there is not a lot I can say to ease your suffering. I wish there was. Just know that you are cared for more than you know. I am praying for better days soon for you, my online friend. You are an inspiration to all of us.

  2. Lana

    I am sorry that you are not doing well. I write more when RA and life have worn me down as well. I hope that you can be back to your old self soon. Maybe it is time to discuss a new treatment plan with your doctor. Well I wish you more pain free days my friend. You are one those people that see the glass half full rather than half empty. Despite everything, you are always optimistic and this is a stronger characteristic of half full glass persons. Take care of yourself and rest – I hope you are feeling better soon.

  3. Wren

    Aw, Guy, I’m so sorry you’re having such a rough time right now. Aggravating, I’m sure, since you’d had a nice long stretch of manageable pain, which allowed you to get out and teach and do the things you enjoy.

    I wish I could just wiggle my nose and take your pain away. Of course, if I could do that, I’d also get rid of mine and everyone else’s, too! 😉 Since I can’t, I’ll just do my best to send you waves of warmth, comfort and quiet joy through the ether, and wish you the best, as always.

    Your continued courage in the face of this disease is inspiring and comforting to me, Guy. Please keep writing and letting us know how you’re doing. Hugs for you…

  4. Post
    RA Guy

    Thanks talltennisgal, Lana, Sister Flare Up, & Wren – your kind words mean so much.

    I recently tapered down to 5mg of Prednisone, so this current uptick doesn’t come as too great a surprise. The easy thing would be to just increase my dosage again, but I’ve been doing so for months and currently feel like I need to reduce my ‘dependancy’ on this drug. I knew it wasn’t going to be easy and so far it hasn’t been, but we’ll see how things turn out!

  5. Pam

    Any night I can pull my shirt over my head, I give a little inner cheer.

    Your words help all of us but I’m willing to hear them less if that means you’re doing better.

  6. Post

    same for me with my paintings, I usually only paint when IM flaring badly, when my hands and wrists and fingers are too swollen for anything, just wedge the brush in and get lost in it..really helps, and so far my ‘pain’tings are turning out well, and in high demand 🙂 which is a nice perk.

  7. sherry elkins

    I’m really sorry you are having such a bad time. Maybe it is time for a new “cocktail”. I’d talk to my doctor. Feel better soon.

  8. Carla

    Like Sherry, I can’t help but ask, what does your doctor say about this recent increase in pain and disability? You posted before that you didn’t think your current treatment was working. I would say that three “Mack truck” episodes a day would signal a need for a different/additional approach. As always, sending warm thoughts your way.

  9. Cathy

    RA Guy, I hate that this flare is staying with you for so long. It seems to have decided you two make a good pair. 🙁 I hope it will soon realize it isn’t welcome and move on. Until then, sending healing thoughts, as I always do.

  10. sheryl

    Reading your thoughts, makes me think of some people’s attitude when they find out you have RA. A few have said,” oh you look fine, it can’t be RA”!! I just think to myself, “oh, that is because you don’t see inside of me or what I am like on my bad days. Or they say, “Are you sure? maybe its just OA or you have just overdone it” Most of the time, I don’t have any comment back to them. I just simply don’t say anything, and walk away.

    I am sitting here reading these blogs because I am trying to force myself to not just sit and cry when my joints are burning, aching, throbbing; and I have got so many things that need to be done. I usually just dig down and find my inner strength somewhere to keep going. Thank you to all of you who put your thoughts and feelings down. Especially thanks to RAGuy. You do help all of us who are also going thru the ups and downs.

  11. Beth

    After months with my primary doctor, had my first rheumatology appointment today. Apparently I have RA and lupus. Have been prescribed prednisone and methotrexate. A little leary of the methotrexate… going to mexico next week plenty of sun and booze down there! gonna start the methotrexate upon my return. one last hurrah before a lifestyle change! At least nw I know why I am in pain and my fingers are swelling and twisting. Feeling a little down today, but really appreciate your site!

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