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?

***********************************

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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I Want To Do What Frozen Things Do….In Summer!!!

Okay, I really just want to BE perpetually frozen right now. Maybe Queen Elsa can help? Or maybe I’m just dreaming of a visit from Idina Menzel. 😉

Right now, my weather app is reporting the same news. Every day.

Feels like 106 degrees?!

Feels like 106 degrees?!

As they say, it’s not the heat, it’s the humidity. When the index is at 74%, and the “feels like” temperature is well into triple digits, it’s truly oppressive. It’s the kind of heat that makes it hard to breathe because the air is so heavy, the kind that causes you to sweat just walking from your car into the house. Alas, these are the joys of Florida in summer.  And for those of us on steroids and other RA medications, it becomes impossible to stay cool.

My body temperature has gotten so out-of-whack that my Eastern medicine doctor has prescribed something called “Quell Fire” for me. It’s a Chinese herbal mix, and it really does help.  I also love my Frog toggs towel, powerful electric fans, swimming pools, and when I get desperate, ice packs. But until things cool off around here, I’ll be forgoing outdoor activities whenever possible. A/C is a lovely thing.

What tricks do you have for staying cool in the heat and humidity of summer?

 

 

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.

My Food Miracle

For the past few months, I have battled stomach issues.  About an hour after eating, I experienced extreme nausea, and unpleasant though it is, I was often unable to digest my meals.  In addition, my joint pain and fatigue were almost unbearable.

My health was spinning out of control, and I had too few answers.  I had to do something.

First, I looked for patterns in my eating habits and symptoms.  My stomach issues seemed slightly worse when I had a meal containing bread or pasta.  Digging deeper, I found strong connections between gluten and autoimmune diseases.  Celiac Disease is a serious autoimmune disorder, causing irreversible intestinal damage and nutrient malabsorption for sufferers that consume gluten.  Gluten intolerances are also linked to other autoimmune diseases and conditions, including mine:

The evidence was mounting.  Despite my love affair with bread (I have been known to eat half a loaf of good bakery bread as a meal :)), I started my own elimination diet experiment three weeks ago.

The first thing I learned is that going gluten-free is not easy.  It seems that simply cutting out bread and pasta would do the trick.  However, this sneaky little protein appears everywhere; as a food additive (ever heard of MSG?), in soy sauce, in beer, and even as a binder for medications and cosmetics.  The good news is that more and more gluten-free alternatives are available, and there are a host of fabulous sites and blogs committed to sharing the most up-to-date information.  I’ve added some favorites to my links page.

Ready for some early results?  Drumroll please…

I.  FEEL.  AMAZING.

My stomach, joints, and energy levels are better than they’ve been in 18 months.  I still have RA swelling and pain, but it’s nowhere near as constant or extreme.  I’m no longer nauseous after eating, and I have enough energy to make it through most days.  I hoped for a noticeable result, but what I got was nothing short of a miracle.

This short-lived experiment has quickly become my new lifestyle.  The pantry is re-organized, recipes and menus are evolving, and the support I’ve received from family and friends has been overwhelming.  Lora has joined me on the gluten-free adventure, so we’re discovering new foods together.  Mom modified her recipe for scalloped potatoes, so I could still enjoy them at Easter dinner.  To date, I have not made changes to my medications, but I’m hoping to reduce and/or eliminate some in the coming months.  We’ll see what my rheumatologist has to say. 🙂

I would never suggest that diet changes can fully replace medications and other therapies, but food is another very powerful weapon in my daily battle with RA.  Goodbye bread, and hello health!

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.