To Family, Friends and Caregivers of the Chronically Ill

My soul mate (and biggest supporter) chillaxing with me at my last Rituxan infusion.

My soul mate (and biggest supporter) chillaxing with me at my last Rituxan infusion.

I read a great piece today on The Mighty that I wanted to share with you all. It discusses the best ways loved ones can help the chronically ill people in their lives. You can find the article here.

Thanks to Danielle Myers, co-author of the CrossRoad Trippers blog, for a well-articulated, thoughtful post. So often, the people we love struggle to understand how to help us. I especially related to “don’t make assumptions” and “I still want to feel useful”. I have said those exact words more than once. 🙂 What resonates most with you? Anything else you wish people understood about your chronic life?

P.S. If you’re not reading The Mighty, a site devoted to stories of disease and disability, I definitely recommend checking it out. Lots of goodness there!

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.

 

 

 

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!

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!

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!

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.

More on Food: Meet Seamus Mullen

Admission time: I’m a huge foodie.  I love to cook, eat, and invent in the kitchen.  I’m a loyal subscriber to Cooking Light, Food and Wine, and Cuisine at Home.  One day, I’d like to go to culinary school.  While surveying the room during breakfast recently, my son said “Mommy…you really have a lot of cookbooks.” I guess the overflowing shelves were his first clue. 🙂

When I was diagnosed, I wondered if I’d have to give up cooking.  Then I read about Chef Seamus Mullen.  He’s a star chef, focused on Spanish cuisine, who owns Tertulia in NYC.  And he has Rheumatoid Arthritis.  He’s tackling his illness with courage and grace, and his career continues to thrive, despite its physical demands and grueling hours.  What’s more, he works to build awareness for RA.  When he appeared on  The Next Iron Chef: Season 2, he even discussed his illness and the additional demands of competing with it.

This week, Chef Mullen popped up again.  One of my favorite bloggers, Sara Nash, published this article about Seamus on MyRACentral.com.  I devoured it, as usual, and am now anxiously awaiting the release of his book.

I adore expressing my love for friends and family through food.  Seamus Mullen reminds me that I can, even though my body might try to make it more difficult.  Thank you Chef…you’re an inspiration!

UPDATE: When we were on our Mediterranean cruise, literally 4 days after I posted this, I discovered that the celebrity chef on board was…..Seamus Mullen! Talk about a crazy coincidence! We tried to get a chance to chat with him, but he was mobbed like a rock star at every event, and we couldn’t get in to any of the private ones by the time we found out.  We did enjoy watching him in an Iron Chef competition with the ship’s Executive Chef. And yes, he emerged victorious. 🙂