Heart To Heart Thoughts From Inside My Chronic Life

  • bedvsout-selfie

    The look changes. The diseases do not. On the left, in my natural habitat. On the right, after spending energy to “clean up”. Oh, and sunglasses hide a lot. 😉

    Rheumatoid Arthritis is one of 100+ types of arthritis.

  • But it’s also not “arthritis”, as I knew it pre-diagnosis.
  • Yes, it’s joint inflammation, immobility, and deformity.
  • But it is not cartilage degeneration, like osteoarthritis.
  • Which is common starting in middle age.
  • RA is an autoimmune disease.
  • This means my body is attacking itself.
  • Specifically, the lining of my joints.
  • RA can be systemic, which means it shows itself well beyond the joints.
  • My eyes, lungs, heart, and autonomic functions are all impacted.
  • And RA affects people in every age group.
  • Including over 300,000 kids in the US.
  • I’m always in pain. Like, 24/7.
  • But the fatigue, both from RA and fibromyalgia, is sometimes just as hard to handle.
  • My outward appearance generally doesn’t match how I feel.
  • I evaluate every task, every day, to determine whether to perform as normal, perform with modifications, or skip.
  • Yes, this includes showers, which zap my energy.
  • Some days, I can manage a short one in the evening before bed.
  • Some days, I can’t.
  • I contemplate my toothbrush twice a day.
  • Sometimes, I can’t manage the back and forth motion required for my manual brush.
  • Other times, the vibration of my electric toothbrush is unbearable.
  • This constant evaluation is mentally exhausting.
  • Fatigue does not mean “in need of a nap”.
  • It’s limb heaviness.
  • It’s brain fog.
  • It’s like having a bad flu, constantly.
  • At least once a day, I break down in tears because of the pain.
  • Pain keeps me from sleep 3-5 nights a week.
  • Opioids do not take it away.
  • Most days, they dull the pain.
  • And are necessary for me to function at all.
  • I use them in combination with other therapies and treatments.
  • So don’t be surprised if I smell like menthol.
  • It’s just the Bio-Freeze.
  • Medical marijuana is not legal where I live.
  • But it’s on the ballot again.
  • I’m scared that millions of chronic pain patients like me are getting lost.
  • While we debate the serious and separate issue of opioid addiction.
  • I have a permanent disabled parking permit.
  • Which I only use when I need it.
  • I have received angry stares and comments because I don’t “look” sick enough to have one.
  • If you have heard about a treatment, I have tried it.
  • Yes, this includes medications, alternative therapies, diets, protein shakes, vitamins, balms, and yoga.
  • Even if it worked for your mother/sister/uncle/grandpa/spouse/roommate, autoimmune disease affects everyone differently.
  • And though I use some of them, my diseases continue to be mostly unresponsive to treatment.
  • Save the unconditional love and support of my wife and son, a treatment that work wonders.
  • Despite all of these challenges, I try to stay positive, especially online.
  • I share photos of wonderful vacations I take with my wife and son.
  • But I don’t share the activities I skip to rest in bed.
  • Or the number of days I cannot even bear to get out of my pajamas.
  • The same goes for work, entertaining, date nights, soccer matches, and well, everything.
  • Many days, my bed is both my office and my dinner table.
  • And my computer and TV are my views to the outside world.
  • So I often feel apart and alone.
  • If I cancel plans we’ve made, it’s because I’m in really bad shape.
  • It is never because you are not important to me.
  • And it breaks my heart that you might think otherwise.
  • That you might stop inviting, stop calling, stop writing…
  • I want to do everything I could do before I was diagnosed.
  • But I can’t.
  • And resetting my own expectations is the hardest task of all.
  • I often feel guilty saying “no”.
  • I often feel like a failure when I can’t do what others can do.
  • Seven years in, I’m starting to accept that I need a different balance.
  • “No” allows me to be better in control of my chronic life.
  • So my disease no longer controls me.
  • It’s hard, and I’m far from perfect.
  • But no matter what comes, I plan on enjoying the hell out of this crazy, beautiful life.
  • As it is, not as I wish it was.
  • For as long as possible.

Thank you for listening. Namaste.

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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!

 

Pain, Opioid Addiction, and Cake

Poster from the movie Cake: www.cakemovie.net

Poster from the movie Cake: http://www.cakemovie.net

NOTE: This post discusses a movie that is not yet available in wide release. I have not had the opportunity to see it, though I have done significant research on its content.

Jennifer Aniston is racking up praise, and awards nominations, for her role in “Cake“. In the new movie, Aniston plays Claire Simmons, a chronic pain sufferer. That part of her character excites me, as it sheds light on the challenges of managing everyday life with unending pain. Unless you live with it, it’s impossible to imagine how pain touches every moment of every day, and this part of the movie will be eye-opening for many. Watching the trailer and seeing her character struggle, I keep thinking “I’ve been there”.

However, Claire is also addicted to the prescription narcotics she uses to manage her pain. By all accounts, her performance is admirable. Still, as a daily Percocet user, I cringe at the thought of once again being represented in the media as a drug addict.

Before I go further, let me state very clearly that I understand the perils of drug addiction.  According to recent studies, more than 2 million Americans are addicted to prescription opioid painkillers, and the number of deaths from these drugs has quadrupled over the past 15 years. It is a serious issue, and one that deserves attention. The problem is complex, and overprescribing is one of the causes. If you need help, I urge you to seek it here. Please.

Media is all over this epidemic, and “Cake” is just the most recent example. A running theme in “House” is the main character’s struggle with chronic pain and Vicodin addiction. Disclaimer: Aside from the pain = opioids = addiction story line, it’s one of my all-time favorite television shows. And the emphasis extends well beyond fiction. “The Doctors” are already using “Cake” to discuss the problem of painkiller addiction in America.

Again, I don’t disagree that painkiller addiction is a sobering and serious issue. But I take issue with the conflation of chronic pain patients and drug abuse. I suppose it’s easy to assume the problem largely rests with those of us that take these drugs regularly. However, evidence doesn’t support that assumption, no matter what the media portrays. A DARE Review of 67 studies on the incidence of chronic pain patients that became addicted and/or exhibited aberrant drug-related behaviors (ADRB) concluded that the correlation is very low. Specifically, the review found:

  • In testing for abuse and addiction, the studies included 2507 chronic pain patients on opioid therapy. 3.27% developed abuse/addiction. When the group was controlled to include only those patients with no history of abuse or addiction, the percentage dropped to 0.19%.
  • In testing for aberrant drug-related behaviors (ADRBs), 2466 chronic pain patients on opioid therapy were included. 11.5% showed ADRBs. When the group was controlled as above, including only those patients with no history of these behaviors, the percentage dropped to 0.59%.

This series of studies all conclude the same thing: chronic pain patients using opioid therapy overwhelmingly do not abuse these drugs. There are exceptions, but we are not a primary source of the nation’s problem. However, when the media tackles the issue of prescription drug abuse, it tends to focus squarely on the chronic pain population. This association has real impact, on policy and perception.

For the truth, I encourage you to listen to the millions of spoonies. We use opioids as directed. They don’t get us “high”. With them, our pain is dulled, and most days, we can function. We can work. We can take care of our kids.

Listen to the spoonies, and you’ll understand the struggles we face when we attempt to obtain these medications. Consider the number of chronic pain patients that:

  • Suffer every day with unbearable pain because our doctors, fearful of DEA prosecution, won’t prescribe opioids that could help us.
  • Drive each month to the doctor’s office each month to show our license and sign for our opioid prescription.
  • Face scrutiny from doctors and pharmacists when we ask questions about our dosage.
  • Must legally document the pharmacy we’ll use to fill the prescription, limiting our options to fill the prescription.
  • Must drive to the pharmacy to learn whether they have stock. The information cannot be provided over the phone.
  • Drive to multiple pharmacies to find stock. My record is 8 CVS visits within a 40 mile radius, in one day, to fill one prescription. It took 7 hours, and I was in tears from the pain of driving.
  • Endure judgmental looks and comments from pharmacists, doctors, nurses, family, and friends.

Without opioid therapy, I would not be able to work, cook dinner for my family, or ironically, make my numerous doctor and pharmacy visits. We need understanding, genuine help, and sensible laws, not blame and judgment. Come to think of it, the same is true for those that are addicted. But that’s a post for another day.

Perception needs to change, and the media wields great power to help. Their portrayals of chronic pain patients, however, often do the opposite. This movie is just the latest example. Though I will check it out when it’s released, I have very mixed feelings on “Cake”. And that’s not something you usually hear from me.

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…

Why I Work From Home

This is how my foot looked when I got home last night. It was so painful, I could barely walk.

I’m very thankful most of my time is spent working (just as hard) at home, and my days in the office are few and far between. The ability to work remotely makes a big difference to many, especially those of us with chronic illness!

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!