RheumaBlog

Same dragon, different day.

Oh, I’ve neglected poor RheumaBlog, and you, for so long! I wish I could say it was because I was out galavanting, exploring the world, and having adventures, but it’s nothing as exciting as that.

A quick graphite sketch of my shy but lovely little cat Emma.

A quick graphite sketch of my shy but lovely little cat Emma.

Instead, I’ve been right here at home. Which doesn’t mean I’ve spent all my time sitting around on my hiney–no, I’ve had Things To Do. I’ve also been coping almost daily with more RD pain than I’ve had in years.

As has been my old rheuma-dragon’s wont, the trouble has been mainly with my hands and wrists, though he’s been nipping and gnawing at my feet now and then, too. A couple of times, he’s tried out my knees, and one unhappy time he chomped

Three Owls. Colored pencils on paperboard coaster.

Three Owls. Colored pencils on paperboard coaster.

into my left shoulder (always his fave, for some reason).

The pain the dragon inflicts is truly unpleasant. Fortunately, the worst attacks have been short, lasting only for a day or so. But the Neverending Flare–the background pain that never stops–has slowly increased in intensity so that my hands, or feet, or both, are always in distress. As we all do, I try my best to ignore them, but it’s gotten a lot harder to do. I find myself taking more pain medication than I want to.

And, though I’ve jabbed myself once a week with my latest miracle drug, Enbrel, for almost four months now, the only change has been for the worse. I have an appointment with a new rheumatologist the first week in September (my old,

Flowers. Corlored pencils on paperboard coaster.

Flowers. Corlored pencils on paperboard coaster.

dearly-loved rheumy up and moved to the other end of the country), so we’ll see what he has to say. I corresponded by email with my old doc just before he left, and I asked about the possibility of trying a new biologic. He said to be patient: the VA requires a six-month trial before any new med will be approved. So, even though I’ll be seeing the new rheumy, I know nothing will change until at least the end of October.

Silly Owl. Digital drawing done with my index finger on my smart phone.

Silly Owl. Digital drawing done with my index finger on my smart phone.

This is frustrating. I know I’m singing to the choir, but waiting for meds to work has to be, after enduring sometimes awful pain, the worst part of this disease. We hear how wonderful these new biological drugs are, and about how many people like us have had their disease slowed drastically and their symptoms all but relieved by them. And yet, for some of us, nothing happens.

I started Humira a year ago October after deciding, with my rheumy, that my symptoms were steadily worsening in spite of the three-DMARD cocktail I’ve taken

Color Cat. Colored pencil on sketch paper..

Color Cat. Colored pencil on sketch paper..

for the last four years. So, in addition to them, I took Humira for six months. It didn’t have any effect. That trial finished, the VA approved Enbrel. And of course, it hasn’t worked so far, either. My rheumy said not to lose hope–it can take six months for these drugs to work. But I’m sorry, I’ve lost hope anyway. At the same

Dragonfly and Morning Glories. Watercolor and colored pencil on paperboard coaster.

Dragonfly and Morning Glories. Watercolor and colored pencil on paperboard coaster.

time I’ve taken these powerful but useless drugs, my RD symptoms have steadily worsened. Along with the constant pain, I’m now also dealing with frequent debilitating fatigue, a symptom I had little trouble with in the past.

But enough complaining. In spite of the dragon, I’ve been doing a great deal of writing for RheumatoidArthritis.net. Please go check it out. My posts are archived

Flowers and Birds. Colored pencil on paperboard coaster.

Flowers and Birds. Colored pencil on paperboard coaster.

there, of course, but there are a great crew of other talented writers to sample, as well. All of them have rheumatoid disease at various stages and intensities. I’ve never seen so much good, solid information wrapped up in excellent storytelling anywhere before. It’s well worth your time.

And yes, I’ve been playing with art. I love my new table, chair, and task lamp. I’m starting small and slowly relearning old skills, but I’m really enjoying it. And I’ve been exploring the art and creativity of other artists, many of them published professional illustrators, online. Illustration is the corner of the art world I’m most interested in and have the most natural affinity for. So the more I can learn, the better.

I’ve scattered some samples of what I’ve been doing around this post. I hope you’re enjoying looking at them as much as I did making them.

Finally, Mom has been up and down, heath-wise. Nothing serious, but it’s hard to say from day to day how she’ll feel, so I have to be prepared all the time to stop everything else to take care of her. And, the time is coming, soon, when she’ll have to quit driving. She’s become very impatient in traffic, and her memory is beginning to fail her. I worry about her when she drives, but I know how hard it will be for her to lose that last bit of independence. It’s heartbreaking.

Anyway, once she stops driving for good, I’ll be her full-time chauffeur. With my RD being so ugly these days, I worry about that. Another reason I wish these danged wonder drugs would just go ahead and be wonderful!

So. That’s what’s been keeping me busy and away from this blog. I hope you’ll all forgive me for being away for so long. I’ll try to do better in future.

Categories: RA

12 thoughts on “Checking in, finally …

  1. Debbie says:

    For years we have been searching for something to work for me and moving up through the different levels of treatments has been a very long, tiring and frustrating process. It was not that long ago the promise of MTX was an attractive proposition but the reality once we got there was 3-4 days every week knocked off my feet exhausted and in more pain than I was previously which endured for weeks on end until that treatment too was declared a failure. We have not moved to biologics yet but I am edging slowly closer. It feels like the process of hoping, waiting, trialling new treatments and being disappointed in never ending but I hold on to the idea that one day we will find the right treatment that works wonders. Wouldn’t that be wonderful.

    Like

  2. Nicole C L says:

    I know how frustrated you are with drug cocktails! I have started Humira just about 2 months ago now. I’m on Humira because no other drug has worked thus far. I’ve had no positive workups for RA for years, except for a biopsy that I had done during my surgery 2 months ago. Even with surgery and on Humira, the cyst that I’ve been battling has come recently. I love RA, especially when it’s a huge mystery.

    Like

  3. Lene says:

    Damn. Four months and nothing except worsening RA? That sucks, sweetie.

    What does suck, though, is your art. I can’t pick a favourite, they’re all amazing!

    Like

  4. SingleRheum says:

    Sorry you’re having a bad flare, fatigue really sucks doesn’t it? It’s my biggest frustration overall, most days I can deal with the pain, I’ve sort of accepted it, like an old aunt who’s always grumpy but you live with it cos she’s family. But the fatigue drains my soul.
    I’m so pleased you’re using your new desk! The pictures you’ve posted are lovely, I particularly like the sketch of your cat 🙂
    Lots of love, hope this flare is over soon xxx

    Like

  5. Mary says:

    Sorry to here the Enbrel hasn’t done the trick. From reading your blog these past years I know we are very similar RA wise. I understand the frustration you feel over having some relatively good years only to have a shocking escalation in disease activity. Hang in there. Something you try will work. Such a disease of patience, this RA.

    On a higher note, your work is wonderful. So glad you have been able to return to your art. Hope it continues to bring you joy while you search for the proper med cocktail.

    Like

  6. Irma says:

    Wren, I’m sorry to hear you are having so much daily pain. And the fatigue just makes things that much worse. I dread returning to the days of yore, when I was in constant pain, and dealing with debilitating fatigue and brain fog. I worry those days will return and hope they don’t. Maybe that’s why I rely on that tiny little pill which I hate to take, but makes my days livable when RA knocks too forcefully on my door. Prednisone. I hope you find relief soon. Your drawings are lovely and it’s hard to decide which is my favorite but if I had to pick, it would be the Color Cat. That’s awesome. Take care. Sending you good thoughts and a virtual hug!

    Like

  7. Jill says:

    Wren, I’ve been reading your blog for the past year. I was diagnosed with RA about 3 years ago. Suffer ring with horrendous pain in my hands at night for 3 years prior. Sleeping with bags of ice wrapped around them to numb the burning fire from hell. Finally I went to my GP and was immediately sent to a Rheumatologist. You know the rest of the story. I was on prednisone , thenHumira (which seemed to be working), but I found it impossible to travel long distances with, keeping the injectables at a certain temperature. So I enquired about the “new” tablet “XelJanz”. I have been on it for about 6 months. Will be seeing my doctor and have X-rays to see what is happening soon. This past January I had a carpal tunnel release and have to have the other wrist done soon. Point is, I am still in denial that I have RA. But my feet and my hands and my doctors say I have it. Just doesn’t show in the blood test, Sero-negative. I feel so alone at times and wish I had a group or someone to talk to when I feel down. I’m 74 years old and have been fortunate enough to be health and in good shape forest of my life. By the way, my hometown is Sacramento. I live on the East Coast, but come home every year to visit family. Would enjoy meeting up with you if you are available. Your artwork is lovely. Thank you for brightening my days.

    Like

  8. So glad for the update. I love your posts on RheumatoidArthritis.net (of course), but Rheumablog is just so much more about you. Sounds like your life is a mixed bag at the moment. The artwork is wonderful! And I know that you’ve so enjoyed bringing that back in your life. Hope those blessings help balance the RA dragon and worries about your mom. Hang in there, friend. Sending hugs! (I’d say “warm” hugs, but I’ve been amazed about how hot it’s been on the west coast!)

    Liked by 1 person

  9. Jules says:

    I have missed you my friend! I hate that you are having such a rough flare. I also hate that neither Enbrel or Humira worked for you. I am down to Actemra or Xeljans. Actemra is the current drug that I am trying. It’s an injection every other week. I have taken two so far- we shall see. The fatigue, is the killer. I don’t know about you but for me, the pain makes me tired and the more tired I am the lower the tolerance to pain. It’s vicious circle and I hate that you are going through it. I love your art! It’s terrific. I am glad that you are able to practice it through all of this. Sending thoughts and prayers to you and your Mama. Sending big hugs and warm wishes.

    Like

  10. Good to have you back, Wren, but so sorry you’re suffering so much … and sorry to hear your mum’s not doing so well either. Love the artwork though – your enjoyment shines through it, and what a wonderful variety of styles! I love them all but my fave is ‘Colour Cat’. 🙂

    Like

  11. adrienne says:

    Wren, I am sorry to hear the Enbrel isn’t working (yet?) and you are not doing well. it really sucks when you are in pain and then the fatigue sets in. Ugh! when it happens to me I don’t feel like doing anything buy laying on the couch. I barely have enough energy to change the channel. I hope this passes very soon and you are up and feeling much better. if the enbrel doesn’t work, there are other drugs and maybe one of them will work. I know it is frustrating but soon you will feeling better. Fingers crossed!

    Like

  12. WarmSocks says:

    Wonderful artwork! Thank you for sharing it with us.
    I sympathize with you about your mom needing to give up driving. Mine does, too, but just doesn’t believe it. It’s gotten so bad that the neighbors have talked to us about it. Yesterday her car broke down (at last). My brothers want me to pitch in on the repair bill, but I’ve had to tell them they’re crazy if they think I’m going to do anything to put her back on the road. I hope you’re able to work something out to transport your mom without it making your rheumadragon act up worse.
    I don’t suppose your new rheumy will give you some prednisone to tide you over until a biologic starts working?

    Like

Comments are closed.

%d bloggers like this: