positive attitude

The Other Side of Invisibility

Generally speaking, I’m not big into selfies. I prefer to take pics of my son and my dogs. That said, friends on social media will likely be familiar with the “progression of mediocre selfies” series; multiple attempts at family self-portraits taken during our adventures. Our crappy selfie skills have become a family punch line. But truth be told, I adore their candid silliness. 😊

For the last 18 months, I’ve been sick enough that I’ve largely disengaged from my previous everyday life. I don’t have to tell you all that, of course, because I’ve been absent here. Pain and fatigue are quite a tag team, as many of you know. They’ve largely limited my ability to write in complete sentences. But I’m slowly writing a post on my continuing pharmaceutical roulette, and I hope to feel well enough to get back to a more regular rhythm soon. I cannot thank you enough for sticking it out with me. 

At this point, you may be thinking “Girl, you weren’t kidding about not writing coherently. I mean, how do those two paragraphs even relate to each other?” But bear with me, because I took a mediocre selfie for this post. 

My selfie skills haven’t improved, but the caption says it all. When you’re chronically sick and mostly homebound, you can feel invisible. When everyone around you is racing to work, you can feel invisible. When your daily accomplishments include “got out of bed”, “slept for more than 3 hours straight”, or “made it to the doctor”, you can feel invisible. 

Much has been written about the frustration of the invisible chronic illness. But less is said about the invisibility we feel.  We are so often forced to the sidelines, as the world spins around us. So, this selfie proves, to me and to you, that I’m still here. Even without a job. Even without makeup. And it’s no accident that I’m holding a crochet project. If I take it slow and use the right tools, crochet is good exercise for my joints. It’s also a calming influence on my mind. I feel accomplished when I complete projects — in crochet, in the kitchen, or with my writing. And that’s crucial for my type-A personality. 

Is the feeling the same as closing a big deal or leading a strategy session with a business partner? As crossing a half-marathon finish line? As singing a solo in front of a crowd? Nope. But like my selfie, these hobbies remind me of where I am on life’s journey. They help me remember that I am here. And no matter what, I’m grateful for that. ✌️

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Lookin’ Back In Front of Me…

I offer up this post with a nod to the late, great Stevie Ray Vaughan.

“Tightrope” is a fantastic song. The lyric quoted in this post title is one of my favorites. And it says a lot about my journey with autoimmune disease. In January 2009, I completed my first half marathon. Disclaimer: I have never been a runner, but I walked the Walt Disney World Half Marathon in just over 3 hours, which for me, was a tough physical challenge. The energy, camaraderie, and general adrenaline rush of “race day” hooked me instantly. So I completed another half in November of that same year. This time, I alternated jogging and walking, and finished in 2:55. I was astounded at what my body could accomplish, and addicted to the goal setting, the training, and the race day experience.

Smiles at the finish of the 2009 Disney Half Marathon!

Smiles at the finish of the 2009 Disney Half Marathon!

Three weeks later, I couldn’t get out of bed. My RA diagnosis quickly followed in January 2010, after which came a host of pharmaceuticals and their side effects. Five years later, I have added 50 pounds to my athletic 2009 frame, though my diet is healthier than ever. Percocet, Medrol, and Bio-Freeze are my daily companions, despite maximum dosage levels of Rituxan. I’ve added Sjogren’s, fibromyalgia, Hashimoto’s, gluten intolerance, vitamin D deficiency, and chronic anemia to my list of diagnoses.

When I look at photos of myself from those days, my thoughts take a predictable course:

  1. I start wishing I could turn back the clock. Wishing that none of this had ever happened. Which immediately leads me to…
  2. Stop looking at old photos. Given everything that’s changed, the past feels painful, so I choose instead to look forward.

Of course, the reality is that chronic illness did happen to me. It IS happening to me. In a recent post, I wrote about needing to accept my life as it is. And I cannot plan my best future if I don’t take cues from my past. So, I’m looking back to find inspiration for my life moving forward. I may never look the way I did then, and I may never finish a half marathon in under 3 hours, but I love races, and I can work toward another one.

I can, and I’ve decided that I will. 🙂 My beautiful wife, some awesome friends, and I have signed up for the Las Vegas Rock and Roll Half Marathon, taking place in November 2015. Yes, training will be less consistent and more painful. No, my time won’t be as good. But I’ve got 179 days to get ready, and 4 hours to complete the course. I’m thrilled and frightened in equal measure, but looking forward to the journey!

 

Invisible Illness Week: 30 Things You May Not Know…

Reposting in honor of Invisible Illness Week, 2014. It’s interesting to re-read my thoughts from 2012, to see how things have changed, or not. Happiness and peace are a daily work in progress, but I remain as committed as ever to living in the moment, and being grateful for what I have. I am using Eastern medicine regularly now, and my diet remains a big part of my journey toward health. I am back to work, working too hard, and trying to listen to my body and find balance. And “House” is still my favorite medical drama! 🙂

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In support of Invisible Illness Week, I answered their “30 things” meme, to raise awareness.  Hopefully, it answers questions some of you have about my journey with chronic illness — especially since I’ve been too sick to do much writing on my RA autobiography lately.  I’d love to hear your thoughts, and if you (or someone you love) is living with an invisible illness, I’d love to have you join the conversation with your own answers!  There are a number of fantastic speakers at the virtual conference this week, which you can reach from the link above.  If you have time, I encourage you to check it out.  Hope to see you there!

30 Things You May Not Know About My Invisible Illness

1. The illness I live with is: Rheumatoid Arthritis (plus Fibromyalgia, Sjogren’s Syndrome and Celiac Disease)
2. I was diagnosed with it in the year: 2010
3. But I had symptoms since: RA symptoms since 2009, autoimmune issues since alopecia in childhood.
4. The biggest adjustment I’ve had to make is: I no longer know how I’ll feel hour to hour, day to day.  I may wake up unable to move, or I may be okay.  As a planner, it’s hard to reconcile that.
5. Most people assume: Whatever happens, I’ll handle it.
6. The hardest part about mornings is: Moving. I’m like the tin man.
7. My favorite medical TV show is: House!!!
8. A gadget I couldn’t live without is: My rollator, my wheelchair, my cane, my heating pads, my knee wedge pillow, and my jar opener. (Sorry, I’ve collected quite a few over time.)
9. The hardest part about nights is: Unrelenting pain.
10. Each day I take 22 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: Use some creams, drink some teas, and eat natural foods.  I have not yet tried others, but am open to them.
12. If I had to choose between an invisible illness or visible I would choose: As hard as it is sometimes, I’d choose invisible.  There are days when I “look” normal, which gives me the opportunity to keep my illnesses to myself.  When I’m in a wheelchair or using my rollator, people look a bit too long, and often ask what’s wrong.  It helps me to understand the strength of those that must deal with that every day.
13. Regarding working and career: I’m in transition.  I spent the first two years after diagnosis trying to move forward in my career as if nothing had changed.  Finally, I got so sick that I could no longer work at all, and I’ve been on disability for 8 months.  Now, I just want to be well enough to work again in some capacity.  Whatever that looks like, I am certain the career I build now will look quite different.
14. People would be surprised to know: I am in pain 100% of the time, but my fatigue is as debilitating as the pain – some days more so. And I feel like a definition is needed here.  Fatigue = flu-like symptoms every day, not simply being sleepy.
15. The hardest thing to accept about my new reality has been: That my body is often incapable of doing what my heart and mind want to accomplish.
16. Something I never thought I could do with my illness that I did was: Talk about it so openly.  I even started a blog on the topic!
17. The commercials about my illness: Are infuriating. Most actors in them are 50+, though women in their 30s, like me, are the most likely RA sufferers.  Commercials also imply greater remission rates than patients actually realize.
18. Something I really miss doing since I was diagnosed is: Having the energy to fully enjoy life with my partner and son.  I cherish every second I have with them.
19. It was really hard to have to give up: Knowing how I’d feel tomorrow.  Oh, and bread.  🙂
20. A new hobby I have taken up since my diagnosis is: Meditation.
21. If I could have one day of feeling normal again I would: See #18.
22. My illness has taught me: To be happy with today, no matter what it looks like.  I no longer wait for some event in the future to make me happy. I look at my many blessings today, and focus my on those. I am happy and at peace every day.
23. Want to know a secret? One thing people say that gets under my skin is: When people equate their grandmother’s osteoarthritis in her wrist to my autoimmune disease.
24. But I love it when people: Ask about my illness, and genuinely want to learn more about the disease, or about me.
25. My favorite motto, scripture, quote that gets me through tough times is:  “Peace is the result of retraining your mind to process life as it is, rather than as you think it should be.” – Wayne W. Dyer
26. When someone is diagnosed I’d like to tell them: That they’re not alone.  There are fantastic bloggers out there, amazing resource sites full of information, and great communities where you can learn and connect with wonderful people who will help you through the shock of the initial diagnosis.  You’ll find your own strength as you go, and this virtual community can help in so many ways. I lean on and learn a ton from them.
27. Something that has surprised me about living with an illness is: As they’ve made me weaker physically, my illnesses have made me stronger mentally.  As a result of dealing with serious chronic illness, I have far more courage of my convictions in all aspects of my life.
28. The nicest thing someone did for me when I wasn’t feeling well was: Seeing me, and not just my illnesses.  Despite my wheelchair/rollator/cane/limp, I am the same person, and it can be easy to forget that.  Those closest to me have not.
29. I’m involved with Invisible Illness Week because: Awareness is necessary.  So many suffer with invisible illnesses, and many are misunderstood, underfunded, and in need of both for research and new therapies.
30. The fact that you read this list makes me feel: So grateful.  Thank you for taking the time, and for your support of Invisible Illness Week!

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…

Happy International Day of Persons with Disabilities!

Did you know that today is the UN’s International Day of Persons with Disabilities? According to their site, this year’s theme is “Break Barriers, Open Doors: for an inclusive society and development for all”. Absolutely!  Consider these statistics from the UN website:

  • Approximately 15 percent of the world’s population, over 1 billion people, live with a disability in some form.
  • People with disabilities are disproportionately represented in the lowest socioeconomic brackets.
  • Disabled people face not only physical, but social and cultural barriers that exclude them from equally participating in society.
  • People with disabilities have a higher mortality rate than their able-bodied peers.
  • Disability often equals unequal access to education, employment, healthcare, and legal support.

I am really proud of the work that my company does around accessibility.  Technology can do so much, and we’re dedicated, as are many other corporations and organizations of all shapes and sizes.  But there is so much more to be done.

A few weeks ago, I read this article, and though I only spend small amounts of time in a wheelchair, the author’s sentiments struck a chord with me.  What’s funny is that there was a similar one just a few months earlier, and some of themes are repeated.  I am sure many of you can relate.  I know I could.

Then, there’s this.  As a frequent Disney guest, the idea that people would take advantage of the disabled policy to “get to the front of the line” outrages me.  Disney’s wonderful treatment of the disabled makes it possible for all enjoy their vast theme parks.  They think about access, and they make it comfortable whenever and however they can in the parks and their resorts.  Every park is not so thoughtful.

I attended one of their competitors in a wheelchair, when it was not possible for me to go another way.  I was almost injured trying to enter two different rides.  In both cases, my wife could barely weave my chair through the narrow lines, and when we got to the end, the workers shuffled me onto the conveyor belts with everyone else, as if I was as able-bodied as the next guest.  Some might say that I should not have been riding (see above: societal/cultural barriers), but really, the ride was perfectly safe for me.  The 90 minutes standing in line, the other 10 hours in the day, and the conveyor belt system were the problems for me. Do those things mean I should not be permitted to ride?  Not at Disney, though they are now changing their policies, reportedly at least partially because of the reports in the above story.  Sad, though I still have faith that they’ll do a good job providing access to everyone.

As even these few articles and my minor experiences show, there IS much to be done.  More than that, it’s complex.

Physical and technological modifications must be made so it’s possible for anyone to perform the same tasks as an able person; whether they’re an amputee, someone in a wheelchair or with a cane or walker, with a vision/hearing/mental disability, or anything that makes them differently abled than the majority.

However, attitudes must changes too.  If we’re not willing to start a conversation, if we don’t invest and fund improvements, if we focus too much on the “dis” and not enough on the “ability”, if we cannot look someone who looks, speaks, or acts differently in the eye and just see them as human, we’ll never get there.  Thanks to the UN, and to all who fight for our different abilities, for giving us focus today. I’m with you!

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!

Pharmaceutical Roulette

 

When you are diagnosed with a chronic disease like Rheumatoid Arthritis (RA), you quickly learn that your life is destined to include medicine.  For many of us, lots of medicine.  Back in 2010, I bought a “days of the week” pill sorter, and I’ve adapted to the weekly ritual of filling it, counting and sorting each medication.  Believe me, when you are battling RA, your hands cannot afford to open 10-15 pill bottles twice a day.

My trusty pill container. I never leave home without it!

I’ll admit that it was tough to adjust to a life of medicine.  What’s more difficult though, is the realization that successful treatment for my illness, and many others, is very much a trial-and-error process.  Until we experience serious illness, many of us believe, naively, that our doctors have the answers.  At least, I know that’s what I thought.  You get sick, you go to the doctor, they diagnose, they prescribe medicine, you take it, and you feel better.  Right?  Wrong.

I am three years into my RA journey.  I see my rheumatologist monthly, and have regular visits with a pain management specialist, a hematologist, a neurologist, an ophthalmologist, and a cardiologist – all for related symptoms and issues.  In other words, I am not neglecting my treatment.  Regardless, my doctors and I still do not have a working treatment plan.  I have continually active disease, joint damage, bone erosions, and nothing (so far) is stopping the march of RA and its autoimmune friends through my body.  What follows is a chronicle of my game of pharmaceutical roulette.

January 2010: Diagnosis
Med Count: 6

For immediate relief, I was put on steroids.  Medrol, to be exact.  I’ve stayed on it for almost 4 years, fluctuating between 4mg and 32mg a day.  Currently, I’m at 14mg a day, which is still far too high for a maintenance dose.  This drug does nothing to stop the disease.  It simply reduces inflammation and pain.  It also carries lovely side effects like weight gain (check), moon face (check), excessive  sweating (check), and adrenal insufficiency (check).  As my friend Dennis would say, it’s a gem. 🙂 But, it keeps me mostly functional, so I keep taking it.  Of course, the goal is to find something that works on the disease  itself, so I can come off my maintenance dose, especially given the long list of side effects.

At the same time, my doctor started me on an anti-malarial called Plaquenil, a common treatment for RA.  She also found that I had extremely low levels of vitamin D (common in those with autoimmune disease), and put me on supplement therapy.  The hope was that these, taken in combination with Celebrex for pain, would begin to control my disease.

The count is six, by the way, because I was already on a beta blocker for my inappropriate sinus tachycardia and Restasis for chronic dry eye.

March 2010: Injection Time!
Med Count: 9

Unfortunately, this combination did not work.  So, I was introduced to a class of drugs called disease modifying anti-rheumatic drugs (DMARDs).  I started with methoxtrexate, which is the gold standard for RA treatment.  I started taking the injectable form of this in March 2010.  It offered a bit of improvement, though my disease continued to be active.

Methotrexate has this nasty habit of removing folic acid from your system, so at the same time, I was put on a prescription dose to replace it.  By this time, I had been on Medrol for three months, and since long-term steroid use can cause osteoporosis, I began taking Fosamax to prevent that side effect.  So far, I have only osteopenia, so I guess it’s working.

June 2010: IVs…Really?
Med Count: 10

When methotrexate alone was not effective, my doctor added my first biologic treatment, a monthly IV infusion of Orencia.  It should be noted that I was not coming off anything I was on at this point.  This was all about adding to what I was taking, trying to find the right biologic and combination of the rest to get my disease under control.

The selection of Orencia was largely a guess.  I had some symptoms that made me high risk for developing multiple sclerosis, which kept my doctor from suggesting the most popular class of biologics.  This was the next best choice, so we gave it a shot.  For the next 6-8 months, I did improve, but probably only 5-10%.  Even with all of the meds I was taking, my doctor increased my steroid dose every few months, to manage my swelling and pain.

At this time, she also prescribed my first more intense pain reliever, called Tramadol.  This provided some additional relief, and on this cocktail, I was able to continue working.  I mostly collapsed every evening and on weekends, but I survived.

Nov 2010: Narcotics Time
Med Count: 11

When I got to the point that I was taking multiple doses of Tramadol every day, my doctor gave me my first narcotic, Vicodin.  We hoped that, with another steroid increase and some stronger pain meds when I needed them, I might need fewer pain meds overall.  Vicodin didn’t help much, so I rarely used it.

March 2011: Allergies
Med Count: 13/12

Eight months into my treatment with Orencia, my disease remained active.  So, my doctor added sulfasalazine and another DMARD called leflunomide.  I handled the first just fine, but had a very bad reaction to leflunomide.  As soon as I added it to my regimen, I was very ill; unable to keep down a meal.  So, that was out as fast as it was in.

It was also this month that I discovered my gluten intolerance.  Minimizing the gluten in my diet has been quite helpful to my digestive system, and has helped me pay very close attention to every ingredient of every food I buy and eat, which is a great thing for me and my family.

September 2011: A New Infusion
Med Count: 13

In July, my doctor and I determined that we needed to move on from Orencia.  These drugs are extremely expensive, running $2000+/month, so unfortunately, the insurance approval process can be lengthy.  Even with my insurance (which is great – I am very blessed!), it took two months to get my approval for Actemra.  Once on a new drug, it can take anywhere from 3-6 months, and sometimes longer, to know if it is working.  So the trial-and-error process is long, arduous, and ultimately, very frustrating.  When I finally began Actemra, one of the newer biologics on the market, I just hoped it would work.

In the meantime, my maintenance dose of Medrol was increased all the way to 32mg a day, in an attempt to keep me functional.  Additionally, I signed a DEA contract, yes – that’s Drug Enforcement Agency, with my doctor for a long-term prescription for Percocet.  In another post, I’ll delve into the humiliating processes required by law for chronic pain patients to get the pain relieving drugs they need.  Suffice it to say, there is substantial room for change.

January 2012: New Year, New Surprises!
Med Count: 15

Biologic drugs weaken the immune system overall, and its ability to fight infection.  After the holidays, I spent time in the hospital, in septic shock from a deadly (for me) combination of a back-to-back common cold and stomach flu.  My blood pressure was dangerously low, my heart rate was dangerously high, and my weakened immune system couldn’t fight without vasopressors administered through a central line.

Unable to move, unable to get out of bed for weeks (even before my hospital stay), I was forced to go on disability from a job I love.  My health was very, very poor, and I wanted answers.  Actemra wasn’t working, and nothing else seemed to be either.  My doctor suspected I had developed fibromyalgia on top of my RA.  When I went to Mayo Clinic for a rheumatology evaluation that month, they agreed with her.

So, I started Cymbalta and Topamax for the fibromyalgia pain, and started seeing a pain management specialist for more treatment options.

June 2012: My Body Rebels, Part 1
Meds 14

I’ve been anemic for a couple of years now, but in May, my regular blood work started showing more severe levels.  So, I got more results, and found that my red blood cells were large, and that they were being destroyed more quickly than they should, a condition called hemolytic anemia.  So, my hematologist and rheumatologist took me off one of my drugs, sulfasalazine, and I started getting additional monthly blood work to check for improvement.

July 2012: My Body Rebels, Part 2
Med Count: 13

The very next month, my liver function tests were abnormal.  So, after 2+ years on methotrexate, I had to stop taking it.  This was a difficult thing to accept, for two reasons.  I was first and foremost concerned about my liver.  I put a lot of stress on it with the medications I take, and hearing that it is behaving abnormally is worrisome.  I also knew that the drug I was giving up was one that helps many people with RA, and I worried about what it meant for my treatment plan.

Also, it was this month that I officially failed Actemra.  Aside from the fact that I now had to restart the 2 month insurance approval process, followed by the 3-6 month “will it work?” process with a new drug, I had another problem.  The remaining biologics available, and the ones most likely to work, were also the ones most risky for me.  Called tumor necrosis factor (TNF) blockers, they consist of the best known and proven biologics on the market: Enbrel, Humira, Simponi, Cimzia, and Remicade.

I had avoided these drugs because they carry a higher risk of developing multiple sclerosis.  I have a number of symptoms that make me high risk anyway, so I elected to stay away from these drugs.  However, Lora and I discussed the options, and decided, despite the risk, to try one.  My doctor documented the contraindication as well as my decision, and fully supported me.   We started Humira, as it seemed to best fit my blood work and profile.  I took a deep breath, and hoped for the best.

September 2012: Double it!
Med Count: 13

The good news was that my approval for Humira took only a week.  After a month though, it wasn’t doing much of anything.  So, my doctor doubled my dose in September, and I started weekly injections.  Within a week, I started to see real improvement in joint pain, stiffness, and fatigue.  It had been almost a year since I had felt anywhere close to this good, and I was thrilled!

October 2012: The Itchy and Scratchy Show
Med Count: 12

Well, the excitement didn’t last long.  The morning after my second weekly Humira injection, I woke up covered in hives.  I knew immediately.  It was an allergic reaction to the drug, and it was devastating.  I got into my doctor right away.  She confirmed, and got me a Medrol-Pack (extra steroids to knock out the allergic reaction in my blood), and some prescription strength Benadryl for my insane itchiness.  As far as a biologic, we decided to try Enbrel, hoping that I would have a different outcome.

My liver functions were still abnormal, so I came off Celebrex, in the hopes that would normalize things.  Otherwise, I was about to add a gastroenterologist to my list of specialists.

November 2012: The Scratching Continues
Med Count: 11

Anyone know the lucky number?

As it turns out, my body and anti-TNF biologics do not get along.  I broke out in hives after my third weekly Enbrel injection, and I’m still battling them as I write this.  I’m starting my second Medrol-Pack with these hives, and still taking anti-itch meds.  My skin feels like sandpaper, and is covered with scabs, though I try as hard as I can not to scratch.

The good news is that my liver function has returned to normal, at least for now.  But, I will not be trying further biologics from this class, which means my options are limited.  Luckily, there is a brand spanking new biologic pill, just approved by the FDA two weeks ago, called Xeljanz.  My doctor and I are meeting on Wednesday, and will be discussing whether I can try that.

I know today’s story is long, but I hope it sheds light on what those with RA face in finding a successful treatment plan.  Ultimately, my number hasn’t come up on the roulette wheel, and in terms of biologics, I’m running out of chips.  The good news is that I have the amazing support of Lora, Bear, our families, and good friends to guide me.  I am confident that by combining pharmaceuticals, healthy eating, meditation, exercise, alternative therapies, and most of all great support and a positive attitude , I will find my way to the winning number eventually.

In the spirit of this week’s holiday, thank you for making your way through my pharmaceutical journey, and for continuing to share and learn with me.  Happy Thanksgiving to you all!

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.

Perfectly Said

During our summer travels, I’ve been blessed to visit with lots of family and friends.  This means that I’ve answered the “how are you feeling?” question many times.  Lately, my answer’s gotten complicated, so Lora and I have been discussing how I should best respond.

One of my favorite bloggers, Rheumatoid Arthritis Guy, nails it with this post.  I have never been happier or more content, despite the fact that my RA is uncontrolled, my physical health is poor, and as of now, I am unable to work.  Because of my attitude, I feel in control, which is absolutely huge in a life of daily unknowns.  He perfectly articulates “how I’m feeling”, even when “how I’m feeling” also includes bedridden.

The seriousness of chronic illness cannot be underestimated.  Neither can the power we have inside ourselves to deal positively with it.

Thank you RA Guy for helping me finding the right words!