Hard Days

Uninvited.

Like a surprise and most unwelcome guest.

Whether it’s the first hard day in awhile

or the next in a long, ongoing flare.

Feels like acid rushing through veins.

Joints burn.

Limbs are so heavy.

Showers are painful.

Mental calculus for every movement.

How long can the bathroom wait?

Sounds hurt.

Ears ring.

Can’t focus.

Can’t even see, sometimes.

Can’t sleep.

Medication doesn’t help.

Neither does meditation

or any of the well-worn remedies.

Click through media

looking for a brain distraction.

There is no escape.

Overwhelmed.

Scared.

Guilty, as she cancels plans.

Again.

How long until she “feels better”?

What is “better”, anyway?

Is this her new normal?

Remembers

she is not alone.

Chooses

to love herself

through as many tomorrows as it takes.

More on Choices…

In 2012, I came off Methotrexate (MTX), a powerful DMARD (disease-modifying antirheumatic drug). It’s widely considered to be the gold standard for treating severe RA, often in conjunction with one of the biologics you see in those ~~unrealistic~~, ~~misleading~~ pharmaceutical ads. And this combination was occasionally somewhat helpful in controlling my symptoms. I know, “occasionally somewhat helpful” is not a ringing endorsement. But I’m six years in, and I’ve not found any combo of drugs that has given me more than 30% relief.

If this drug was a key part of my best cocktail, why did I stop taking it? Well, as users of MTX know, liver toxicity is a serious concern. So, along with the weekly injections, patients require regular liver checks, also known as monthly blood work. Yep, it’s pincushion central. And my liver function tests took a nosedive in July of that year. So, my rheumatologist took me off immediately.

Fast forward to today. It’s February 2016, and I’m desperate for something that will get me any relief from the crushing pain and extreme fatigue. Unfortunately, I’m mostly out of options. My last biologic stopped working, and because it’s Rituxan, I have to wait four months for it to exit my system to try another. (Aside: I’m running out of “others” to try, but that’s a ‘Choices’ post for another day…I smell a series here!)

While I wait, my best option is to restart a drug that has already proven itself to be detrimental to my liver. I’ll take every precaution, and my doc and I will be paying close attention to that particular organ. But my quality of life is paramount, so if there’s even a chance it’ll help, I’m taking it. So, tonight, I’ll be back to Thursday evening injections and Friday MTX hangovers. It’s a different kind of #tbt. That’s Throwback Thursday, for those not versed in the lingo. I’m not posting a picture on Facebook, but I thought I’d share it with you, dear readers. I don’t think it would make sense to anyone else.

Ain’t no party like a Methotrexate party…

Confessions of a Chronically Ill Overachiever

January marked five years since my RA diagnosis. It’s been a long road. Over the last couple of thousand days, I’ve received additional diagnoses and tried many remedies. I’ve gotten my hopes up and lost hope more times than I can count. Still, my life is mostly one continuous flare. And I have a confession.

I’m over it. ALL of it. The bone-crushing pain and the soul-shattering fatigue, of course. But also the endless planning, the constant balancing, the “perfect diet” quest, the pharmaceutical cocktails, the restrictions, the endless doctor visits, the guilt, the embarrassment….the end of carefree days. Most days, I can barely fit into my shoes. During the rare times I feel relatively “good”, I’m waiting for the other shoe to drop.

The relentlessness of chronic illness has taken a tremendous emotional toll on me, on my loved ones, and on my life. That’s inevitable, I suppose. But here’s another confession.

I believe I am making it worse.

I’ve been on this earth for 41 years. For all of that time, I’ve been a planner, a doer; what is commonly referred to as a Type-A personality. I face my setbacks head on, I stay positive, and I keep pushing.

Finding Balance = more visits to beautiful Alaska! Photo credit: Jessica Hawk-Tillman

And that’s the problem. I have been treating RA, Hashimoto’s, Sjogren’s, Fibro, tachycardia, and food allergies like temporary setbacks. In my mind, they’re something I need to push through so I can “come out stronger” on the other side. Case in point: In late 2011, I pushed myself so hard that I caught two viruses back to back. My body shut down, and I needed a central line and vasopressors to save my life. I had sepsis, spent days in the ICU, and was off work for 10 months. It should have been a wake-up call to me. It wasn’t.

In conversation, I would tell you that my expectations of myself are different than they were before I got sick. In my head, they are. But my actions continue to reflect my lifelong attitude toward any obstacle. “Forging on” is leading to crashes, disappointment, and feelings of failure. And if I want to do more than survive, I need to change.

This doesn’t mean I’m giving up. Quite the contrary, actually. I understand that while I need to keep a positive outlook, it must be balanced it with the reality of my daily challenges. I understand that I need to keep pushing for better health and new treatments, without pushing myself over the edge.

The amazing Toni Bernhard spoke about this very phenomenon in her most recent article. She discusses “positive thinking” vs “mental contrasting”, and wow. She nails what I’m trying to say above. Before we continue, please take a few minutes to read her thoughts at the link above. Go ahead, I’ll wait. 🙂

I’m now reevaluating every aspect of my life with these 3 questions. What’s my goal? Given my health, what are the obstacles I may face? How do I balance positivity and the reality of these obstacles, so I can reach my goal?

My work life today looks almost identical to my pre-RA days. The pattern of my days and weeks is predictable. I push myself during each work week, collapse most every night and weekend, and feel guilty and disappointed in myself when I do. Afraid to ask for accommodations at work. Afraid to say ‘no’, despite my body’s screams. Now, I’m speaking up. I’m requesting accommodation. I’m working with my manager to ensure my work allows me to contribute meaningfully, while keeping some spoons in reserve more often than not.
As we all know, doctors, pharmacies, and insurance require lots of extra energy to manage. They’re necessary, but I’m looking for ways to be a good patient and optimize these tasks. Here is one service I’m currently investigating. I’m pretty intrigued by the possibilities.
I’m opening myself to using assistance on long outings, remembering that I won’t enjoy myself (nor will Lora and Bear) if I am focused solely on my own pain and fatigue. Canes, rollators, and even my wheelchair are friends, not enemies. I’m even considering a motorized scooter.

This process is raw, and frankly, it’s a bit scary to share. But we’re all facing it. And I’m thinking it might be less scary if we do it together. So, I’d love to hear from you. What are your confessions? What changes are you making? What have you realized? Does “mental contrasting” resonate with you?

It’s taken five long years, and lots of lessons, but I get it. In that spirit, here’s one more confession:

I am chronically ill. It is not my fault, and it was not my choice. Still, there is a fulfilling life out there for me. It just looks different than the one I had before. I accept this, and I will do the work to live it. Every day.

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!

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.

Travel and Chronic Illness

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!

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.

Polar (Opposites) Summer…

After a whirlwind summer of contradictions, I’m finally back. The past few months have been a perfect microcosm of life with Rheumatoid Arthritis. Here’s what happened:

In May, these images filled my days:

That’s right. Lora and I spent a blissful two weeks cruising the Mediterranean Sea. We explored the ruins of ancient Rome, viewed masterful Renaissance art and architecture in Florence, witnessed the world’s most famous film festival in Cannes, and enjoyed a delicious home-cooked lunch on an olive oil farm in Montenegro. We even attended a wine tasting on our ship’s lush, green lawn, while overlooking the magical city of Venice.

Sure, I had pain. Sure, I needed to consciously balance activity and rest each day of the trip. Even with those limitations, though, I saw and did more than I could have possibly imagined. Life was perfect.

Fast forward to mid-June, when I took this picture of my ankle:

Sexy, eh? Not exactly the shape I’d like to accentuate with a pair of Manolos. June was the single worst month I’ve had since my diagnosis. I spent almost 3 weeks in a wheelchair, and 10 days in bed. Every joint was swollen beyond recognition and I endured constant, excruciating pain, even with regular doses of narcotic pain medications. I had no idea how I’d make it through.

In early July, I finally started feeling a little better. When I saw my rheumatologist, she suggested that we try a new biologic (the IV infusion drug I get monthly), given that my disease remains very active. As a result, RA is doing daily, irreversible damage to my body. Taking her advice, I started the two month approval process for Actemra. In two weeks, I’ll get my first dose, and by the end of 2011 (almost 2 years after my diagnosis), I may know if it is helping control my immune system.

I spent July and August working – much to the dismay of my doc, who thinks I should be on disability – and enjoying summer with those I love. I celebrated some birthdays, and visited family in NC and MI. Each morning began with an evaluation of my health (good day or bad). From there, I decided what I could/could not accomplish; at work, at home, and at play.

That’s life with any serious disease: lots of ups and downs, daily unpredictability, and a long and painful treatment road. During this crazy yet wonderful summer, I experienced all of those in spades.

The RA Rollercoaster

I’m a huge fan of rollercoasters. My first “big” one was the Gemini at Cedar Point, which I tackled at age 8. I was immediately addicted to the whole experience: pre-ride anticipation and fear of the unknown, alternating sensations of queasiness and exhilaration while on the track, and afterward, the pure adrenaline rush and that “veni ,vidi, vici” feeling.

Life with RA feels a lot like that. Last Wednesday, I got my infusion after a two-week delay (a story for another post). Finally, on Thursday morning, there was a sliver of light at the end of my flare tunnel. After living with so much pain, I was ecstatic just to engage more fully in everyday life. I was finally stepping out of the fear and queasiness of the ride, and into the exhilaration.

With tolerable pain levels and a bolstered mood, I spent the weekend enjoying both my productivity and downtime. I grocery shopped, cooked, did laundry, shuttled Bear to practices, baked a birthday cake, spent a few hours at Disney, and enjoyed a meal with wonderful friends from Michigan. Nothing too taxing or crazy – just a lovely and normal weekend. (Okay, I know Disney isn’t “normal” for most, but I’m blessed to be an annual passholder that lives an hour away.) Overall, I suspect these activities sound similar to those that filled your weekend.

Last night, the RA rollercoaster track took an unwelcome turn, as my pain returned. Over the last few days, I consciously tried to balance my activity with rest, but it wasn’t enough. The physical pain is tough, but the emotional pain can be even tougher. This morning, I find myself sad and frustrated that my body responded to “everyday life” as it did, and afraid that I may never break the cycle.

Since this disease is chronic, it’s easy (yet dangerous) to think of RA as a neverending rollercoaster. If we do, we miss out on the end — the adrenaline rush of life. Instead, I’m choosing to treat each day as a new ride, balancing my constant fear of the unknown with things I can cheer and conquer. When I was in high school, my friend Paula and I rode the Gemini 23 times in a row. Thirteen months past diagnosis, I’ve shattered my own consecutive ride record. I’m competitive, to be sure, but RA is one rollercoaster I’d much rather get off for good.

Rude Awakenings: Life with Rheumatoid Arthritis

Living life to the fullest, while facing the daily challenges of chronic illness…

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