3 Things The Chronically Ill Wish Their Loved Ones Knew

Wanted to share this post from the amazing Toni Bernhard, author of the Turning Straw Into Gold column at Psychology Today and author of the brilliant How to Be Sick. If you are chronically ill, or love someone who is, please read her work. She’s amazing, as evidenced here:

http://www.psychologytoday.com/blog/turning-straw-gold/201405/3-things-the-chronically-ill-wish-their-loved-ones-knew

Just wow. As Lora can certainly tell you, I continue to struggle with all three of these, and as usual, Toni absolutely nails the discussion of every single one of them.  When I have these feelings, I try to acknowledge and accept them, then let them go, and focus on what I have today, versus what I have lost. The support and love of family, friends, and the RA/AI/chronically ill community helps tremendously as well.

I hope the wisdom in Toni’s post helps you know you’re not alone, and her writings guide you toward finding your own inner peace.

 

 

 

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The Continuing Adventures of Life with RA (2014 Edition)

Much has changed since I last posted, so here’s a quick attempt to catch you up:

  • Xeljanz is officially out. After a few months of testing, my rheumatologist and I came to the conclusion late last year that it was, in fact, the source of my rapid weight gain, so I had to stop taking it. This was a bittersweet day, as you can imagine. I was happy to finally know the source of the weight gain, but sad to say goodbye to the biologic that was finally working to slow the damage from RA.
  • Rituxan is in. In late December/early January, I had my first set of Rituxan infusions. Mostly, they went fine, and took me back to a manageable disease level from approaching near constant use of my walker and breaking out the wheelchair for longer excursions. I experienced some tachycardia, a wicked headache, and a few other symptoms sporadically for 48 hours after the first infusion. For those of you who have taken Rituxan, or researched it, you know that the 6-8 hour, then 3-4 hour infusion processes are time-consuming. Of course, it’s worth it to get some relief. I’m hoping it’s really working, because after this, I’m officially out of biologic options.
  • I’ve added Eastern medicine to the mix. In February, I started seeing a Doctor of Chinese Medicine/Homeopath/Kineseologist/Acupuncturist. Yes, she has lots of degrees and lots of expertise in Eastern medicine. It’s a whole different approach than what I’ve used before, and I love it. She’s helped me with my continuing digestion problems by finding another food intolerance, this time to dairy. She’s helped me work through the chronic fatigue, both resulting from my autoimmune issues and from the side effects of my Western medicines. I have acupuncture sessions every other week, and even while I continue to struggle with RA, I notice my general physical and mental health improving. I am even losing some of the Xeljanz weight, despite my continued use of Medrol.
  • My RA is more active than ever. Despite the positive effects of Rituxan and my progress with Eastern medicine, my disease is extremely active. My most recent blood work
    Waiting for Rituxan....3 weeks to go!

    Waiting for Rituxan….3 weeks to go!

    showed high CRP and SED rates, even 2.5 months after Rituxan. Of course, I don’t need blood work to tell me that my disease is active. My joints tell me every day when I can barely move them. My body tells me every day when it begs to go back to bed. So, I wait. Generally, Rituxan infusions occur every 4-6 months. My next one is scheduled 3 weeks from now (5 months after my first). Tick tock, tick tock.

I feel grateful that, over the past few months, I’ve learned much more about my body through my experiences with Eastern medicine. Now that I have so many of my tertiary issues under control (food intolerances, digestion, even some of the fatigue unrelated to RA), I feel hopeful that I’ll see the full effects of Rituxan when I get my next set of infusions in a few weeks. Spring is a new season; a time of rebirth following the long winter. After almost 5 years with this disease, I’m ready for mine.

Wishing you a spring full of new discoveries and a rebirth of your own…

Why I Work From Home

This is how my foot looked when I got home last night. It was so painful, I could barely walk.

I’m very thankful most of my time is spent working (just as hard) at home, and my days in the office are few and far between. The ability to work remotely makes a big difference to many, especially those of us with chronic illness!

What’s it Like to Have RA?

I’m in the middle of a bad flare, currently trying to get work done from bed. As I was thinking about how to describe how the feeling to my colleagues, friends, and family, I came across this video:

Wow. What a help it would be if, as part of their training, our rheumatologists all wore a suit like this for even half a day! It cannot simulate the pain, of course, but it can provide some idea of what this crushing, invisible disease is like for their patients. Unlike an RA flare, the suit is predictable, and you can remove it anytime you like, but I applaud Dr. Hamburger and his team for dreaming this up.

Travel and Chronic Illness

sunsetat35000feet-nov2013

There are some benefits of air travel. This was my view of sunset on today’s flight to Seattle.

As the holidays approach, I’ve been thinking a lot about travel.  Anyone with chronic illness can tell you that the thought of travel is as exhausting as it is exciting.  The change to routine, the long flights, the additional medications, the stress of being away from doctors and the comforts of home — they don’t even begin to cover it.  And like everything else we face with chronic illness, the amount of planning required to travel successfully can be overwhelming.  Add that to the stress of the holiday season itself, and it can be a recipe for major flares, serious illness, or worse.  It was just after the holidays two years ago when my run down body caught back-to-back bugs, and I ended up septic and in the ICU.

This is the first year since that incident that I’m traveling at the holidays, so this topic has been on my mind.  My life looks eerily similar — I am back to working full-time, still dealing with uncontrolled RA, and traveling for both Thanksgiving and Christmas.  I’m smarter about my illness now, and less likely to keep pushing (I think). But, I can use some crowdsourcing too. 🙂 So, I’d like to find out what you’re up to this year, and collect wisdom from the group for a holiday post on managing travel with chronic illness.  To kick it off, here’s a short poll.  If you can spare a minute, I’d love to hear about your plans.  Please leave comments too!

I’ll compile our collective thoughts into a post, and we’ll try to learn from each other.  This is my favorite time of year, and though I will make sure I take care of myself, I refuse to do anything other than enjoy the season to the fullest!

Ups and Downs

Xeljanz. It’s been working well on my RA symptoms for the last few months.  During that time, I’ve been squeezing as much life out of every day as I can. Quite frankly, I had forgotten how to balance that kind of “busy-ness”. I definitely overdo it some days, and I pay the price for that, but after the last few years, it feels good to have the energy to even make that choice. If you know me, you know I’ll err on the side of “too much” vs. “too little” whenever I have the chance. For the most part, it’s very much been an “up” time.

So, I didn’t notice at first when my weight started creeping up.  Until my clothes no longer fit.  Until, for the first time in my life (not counting when I was pregnant with my son), I was gaining in my stomach. Usually, my hips, bootie, and thighs are my problem areas.  It was weird.  And it didn’t stop. It hasn’t stopped.  It keeps getting worse. I have also developed horrible GI symptoms (I’ll spare you the details :)), worsening fatigue, and some other odd symptoms unlike those I usually feel with RA.

Like most health issues we spoonies experience, it’s not simple.  I’ve seen an endocrinologist.  She diagnosed me with probable Hashimoto’s Thyroiditis, though my numbers are still barely in the normal range.  I’m on a low dose of Synthroid, which has already helped my fatigue. I’ll go back regularly for blood work (because we all need more of that, right?), and she’s looking at other causes for my new symptoms.  It’s just hard to know if something is amiss in my endocrine system, because I take Medrol every day. So, she’s making educated guesses. Comforting.

In the mean time, the lack of definitive answers combined with my continuing symptoms have earned me another specialist. That’s right…I now have a gastroenterologist! Pretty soon, I’ll have collected the whole set of doctors. I wonder what the prize is when I do! 🙂 He’s also running tests; blood work, of course, and next week, my very first colonoscopy. I’ll write about that lovely experience after, and we’ll see if I get some answers.

My rheumatologist did find a trend in my weight gain though, and it goes back to Xeljanz.  Though it’s not listed in the literature as a side effect, she noted that my weight gain started, very slowly, the month after I went on the drug.  Over the first 3.5 months, I gained 8-10 pounds,  Then, my weight took off like a rocket. I’ve been gaining 5-7 pounds every month for the last four. Since it was the only change in my medication during this time, it seems likely that the RA drug that’s helping me may be causing a very serious side effect. Guess how we find out? I’m off Xeljanz for 45 days, to see what happens to my weight.  If it stabilizes, or starts to come down, I will not be allowed to take Xeljanz again. It was the last biologic available to me — the only one I hadn’t tried — so according to my rheumy, my next option is clinical trials.

Today, I used a cane for the first time in 2013.  My pain levels are so high that I have insomnia (“painsomnia”, a fellow spoonie called it once. I love that!). I’m not sure what the future holds in terms of my mobility. What goes up must come down, I guess.

I tell this story for two reasons.  First, I promised many of you updates on my progress with Xeljanz.  Things have been mostly going well, or so I thought, until this setback. The final jury on my experience is still out though, and I’m not giving up hope. Neither should you. Second, this blog is about awareness.  These diseases are complex, and most of us work with teams of specialists to proactively manage our health.  It’s like another job, in many ways.  Spoonies are superheroes, beating the odds to live their fullest lives every day.  Especially during Invisible Awareness Week, I wanted to recognize this wonderful community.  Here’s to more ups than downs for all of you in the coming weeks and months!

Revisiting The Spoon Theory

It’s been too long since I’ve posted the link to Christine Miserandino’s brilliant Spoon Theory. There is simply no better explanation of what it’s like every day to live with a chronic illness (or three).

I think “counting spoons” has been one of the hardest adjustments I’ve had to make over the last 3.5 years.  Before my diagnoses, I had boundless energy.  When I look back, I marvel at the things I accomplished in those days, with no thought to running out of gas.  Now that I have a finite number of spoons though, I have twin struggles:

1) Saying ‘no’ when I want to jump in, so I can make sure my spoons last through the day most of the time.

2) Sweating the details: every. little. thing.  from how I hold my toothbrush to where/how I need to sit when I work.  I suppose it’s a good thing I’m a Type A personality, but this level of planning is excessive!  😉

If you have not read Christine’s wonderful piece yet, please take a few minutes to do so.  Whether you have a chronic illness, or you love someone who does, it will provide a perspective on our daily lives unmatched by anything else I’ve seen.  If you’ve already read it, I’d recommend another glance.  It’s enlightening every time!