In My Shoes, 2014 Edition

A blast from the past. I’m flaring HARD right now, and working on a few new posts. But this one, posted first 3+ years ago, feels appropriate to share today. Here are a few new things to add to the below list:

– To explain your illness to new work colleagues?
– To constantly tweak your diet in an attempt to find some relief?
– To spend extra time and money on Eastern medicine and physical therapy every month?
– To plan everything down to the minute in an effort to keep yourself out of a flare?
– To do everything “right”, and end up flat on your back fighting through excruciating pain and fatigue?

I’m sure there are lots more. What would you add?

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Have you ever imagined how it would feel:

– To require an assistive device to open a jar?
– To be unable to grip a pen or a fork?
– To ask for a child’s help opening a toothpaste tube or bottle of water?
– To be stuck inside a room because you can’t turn a traditional doorknob?
– To cancel plans with friends because you hurt too much to get out of bed?
– To pack a cane every time you leave the house, just in case?
– To shop for a wheelchair as backup for days when you can’t walk at all?
– To eat healthy foods and gain weight uncontrollably because of the drugs you take?
– To inject yourself with medications weekly?
– To require a seat for your shower?
– To purchase a “days of the week” pill sorter to keep track of your meds?
– To endure stares and comments when you park in a disabled spot, because you don’t “look” sick?
– To be unable to move when you awaken each morning?
– To endure a monthly IV infusion for the rest of your life?
– To smile through tears when you encounter a firm handshake or embrace?
– To be unable to wear half the shoes in your closet because the heels are higher than 1”?
– To regularly face drug side effects, including headaches and bouts of nausea?
– To battle extreme fatigue on a daily basis?
– To watch from the sidelines while your child plays in the park?
– To be told you’re too young to have arthritis?

I never did, until I was diagnosed.  Now, these “imaginings” are my daily reality.  I put it all in perspective by remembering my blessings, but I won’t lie.  It’s a constant struggle.  If you know someone with RA, please remember to put yourself in our (very sensible and flat :)) shoes.  Awareness begins when our friends and family understand how this disease impacts every facet of our everyday lives.

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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…

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.

In My Shoes

Have you ever imagined how it would feel:

– To require an assistive device to open a jar?
– To be unable to grip a pen or a fork?
– To ask for a child’s help opening a toothpaste tube or bottle of water?
– To be stuck inside a room because you can’t turn a traditional doorknob?
– To cancel plans with friends because you hurt too much to get out of bed?
– To pack a cane every time you leave the house, just in case?
– To shop for a wheelchair as backup for days when you can’t walk at all?
– To eat healthy foods and gain weight uncontrollably because of the drugs you take?
– To inject yourself with medications weekly?
– To require a seat for your shower?
– To purchase a “days of the week” pill sorter to keep track of your meds?
– To endure stares and comments when you park in a disabled spot, because you don’t “look” sick?
– To be unable to move when you awaken each morning?
– To endure a monthly IV infusion for the rest of your life?
– To smile through tears when you encounter a firm handshake or embrace?
– To be unable to wear half the shoes in your closet because the heels are higher than 1”?
– To regularly face drug side effects, including headaches and bouts of nausea?
– To battle extreme fatigue on a daily basis?
– To watch from the sidelines while your child plays in the park?
– To be told you’re too young to have arthritis?

I never did, until I was diagnosed.  Now, these “imaginings” are my daily reality.  I put it all in perspective by remembering my blessings, but I won’t lie.  It’s a constant struggle.  If you know someone with RA, please remember to put yourself in our (very sensible and flat :)) shoes.  Awareness begins when our friends and family understand how this disease impacts every facet of our everyday lives.

Where Did This Blog Title Come From?

Why “Rude Awakenings”?  Well, as anyone with RA can tell you, mornings are notoriously tough.  We wake up stiff, swollen, and sometimes, completely unable to move.  It generally takes me 3 hours to feel as limber as I will for the day.  

Since I have a six year old son, a full-time job, and an active dog, it’s not realistic for me to lie in bed until 9 or 10 (though believe me, I take advantage of that opportunity whenever it arises).   So, I’ve found another way to start my mornings.  I often set my alarm hours before I need to start my day.  Trust me, this is a big deal given that I’m the farthest thing from a “morning person”.  While I wait for my body to catch up to me, I meditate.  I spend the time breathing deeply and focusing on three blessings in my life.  It’s turned the rudeness my body delivers in the morning into a daily renewal of my spirit.

Meditation is certainly known to be a beneficial exercise, and is something that many people engage in, so it’s funny that I found my way into a regular practice through illness.  I guess discovery often works that way, so I’m trying to keep the lesson to apply elsewhere.  Positive things can arise from any situation – sometimes we just have to look a bit deeper to find them.