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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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.

 

 

 

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.

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!

I Can’t. I’m…Busy.

The second half of this week, my body decided to completely rebel against the travel, wedding planning, and general, joyful craziness that has consumed the summer.  I crashed.  Hard.  For the last two days, I’ve barely been able to crawl out of bed.  The energy required for me to type these words is monumental.  But in the moments when I can, it got me thinking.

As usual, the thoughts start with my list.  All the things I need to get done.  How I can’t afford to be sick.  Usually, that leads “Type A” me to a spiral of frustration and emotional distress. I end up canceling plans, apologizing to my family, and feeling generally guilty because I “couldn’t do anything”.

I took a different approach yesterday.  Instead, I looked up the definition of busy.  Here’s what Merriam Webster had to say:

busy   adj \ˈbi-zē\

busi·er busi·est

Definition of BUSY

1a: engaged in action : occupied b: being in use <found the telephone busy>

2: full of activity : bustling <a busy seaport>

3: foolishly or intrusively active : meddling

4: full of distracting detail <a busy design>

Hmm.  Engaged in action.  Yep, my body sure is, housing my out-of-control immune system.  Full of activity? Pre-diagnosis, I did two half-marathons, and had far more energy after each one than I have now.  Intrusively active is my favorite, because duh. Nothing about auto-immune diseases is non-intrusive.  And let’s see.  Full of distracting detail, as in a busy design.  Like the worst floral, plaid, stripe combination in HISTORY, done on VELOUR.

These four definitions reminded me that I am also busy, even when I cannot move an inch.  And I realized that it’s my job to remember all my body is dealing with, even when I feel to myself like I’m doing nothing.  So the next time I don’t get to something, my reason should reflect that instead of unnecessary guilt or shame.  I indeed got busy – just in my own way.

Now if you’ll excuse me…my tea, heating pads, and I are very busy this afternoon.

Choices

What a week.

Like everyone, I spent time yesterday reflecting and remembering one of our country’s most horrifying days.  I watched somber memorials, thought about the continuing conflict we face, and reflected with friends and family on where we were, how we heard, what we did, and how we coped 10 years ago.

A few days before, I read an article on Rheumatoid Arthritis (RA) that contained some sobering statistics:

– Less than 1 percent of people with RA go into remission, even with treatment.

– Within 5 years, 50-70% of us have some disability.

– Half of us will be unable to work within 10 years.

– The five-year survival rate of patients with more than thirty joints involved is   approximately 50%, similar to severe coronary artery disease or stage 4 Hodgkin’s Lymphoma.

– One researcher concluded that there was an average loss of 18 years of life in patients who developed RA before the age of 50.

Given these reminders of life’s fleeting nature, I have two choices:

I can slide into a serious depression. I mean, it’s hard to think positively about the future when reading those statistics and seeing what’s happening in the world.

OR

I can spend every day living my happiest and most authentic life, contributing meaningfully to the world, fighting to help myself and other RA patients beat the statistics, choosing the right thing (even when it’s not the easy thing), and showing love and acceptance to my friends and family.

Sounds downright Pollyanna, I know.  But I figure that when the harsh realities of 9/11 and serious illness are almost too intense to bear, my best hope is to battle back with a ferociously positive, loving response.  Because no matter the circumstance, no matter its difficulty, I will not give in to fear and sadness, not even for a second.  I have a choice.

Defying Gravity

Today is Monday. The day all we get back in the saddle.  The day of aching ears, as we run a marathon of back-to-back-to-back conference calls (well, at least that’s true where I work).  Usually, it takes an extra cup of coffee to get through it all.  For me, it’s also the day I inject myself with methotrexate.  This medication was first introduced in the 1950s, and was originally developed as a chemotherapy drug.  Now, it’s also commonly used to treat moderate-to-severe Rheumatoid Arthritis.  And when I first learned that I needed the injectable one, I was petrified.

You see, I have always had needlephobia. Through a lifetime of routine tests, blood donations, a pregnancy, and a couple of surgeries, I’d never once watched a needle penetrate my skin.  The thought that I’d have to inject medicine into my own body every week made me, to say the least, very nervous.

My nurse was very patient (I admit, bad pun intended :)), teaching me to fill a syringe using saline and allowing me to practice by injecting an orange a few times.  Eventually, the moment came when I had to prove that I could do it.  On myself.  By myself.  With shaking hands, I filled the syringe with the yellow liquid, carefully tapped out the air bubbles, and tried to remember to breathe.  I then sterilized a small area on my belly, positioned the needle, took a deep breath…….and pulled away.

Nurse Yvonne was wonderful and encouraging, reminding me how well I did with the fruit.  Of course, the orange did not have RA, or any ability to feel the pinch of the needle, so it was just slightly easier.  Panicked, I asked her for a moment alone.  When she left the room, I closed my eyes and dropped into a brief meditation.  What would it mean to have some movement back in my body?  To me, to those I love?  What would I do to make that dream a reality?  I sang a favorite song to myself, “Defying Gravity” from “Wicked” (my go-to inspirational song).  I pictured all I had recently faced and how far I had come.  Within minutes, the tiny needle seemed even smaller.  When I opened my eyes, my hands were steady.  Nurse Yvonne rejoined me, and in one quick motion, I did it, overcoming a fear I had held for almost 37 years.

For me, every Monday’s injection is a reminder of my inner strength.  Unlike my sister, I never aspire to a medical career, but needlephobia is definitely in my past.  Sometimes the smallest things can make us feel the most powerful.  Of course, a little Broadway inspiration never hurts. 🙂