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.

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.

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Ain’t no party like a Methotrexate party…

 

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!

 

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.

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

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.

Brains Versus Brawn

I love this article by Christine Miserandino. It’s amazing to me how differently we spoonies are treated at times. I relate completely to Christine’s story in this article.

First, a disclaimer: I am blessed to work for a great company with fantastic people. I am grateful every day for what I have. Flexibility and modifications allow me to continue working at the same career I enjoyed for 15 years prior to my diagnosis. I am now officially a “home office” employee, so I can work with my feet up or from bed when I must. I can often flex my hours, taking breaks as my eyes or joints require. I have set limits on my travel, which every manager I have had has respected. I am fully aware that at some point, all of this may not be enough, but for the last 5 years, I have mostly made it work. Pun intended. Duh.

That said, people have changed with me. When I first “came out” with my disease at work, things were suddenly, and subtly, different. Colleagues hesitated to include me on meeting invitations and virtual teams, concerned that they were “putting too much on me”. Managers tiptoed around me, offering a placating “How are you DOING?”, complete with the pitying look and the ever-present, but unspoken “Are you still going to be able to do your job?”

This is by no means a universal reaction, just one I never witnessed until I was “out” with my chronic illness. When it occurs, I know those who do it have the best of intentions. They just aren’t sure how to handle the new, sick me. They aren’t sure what to do when they see me attending events, shuffling gingerly to my seat, juggling my food at the buffet along with my cane, or sitting my wheelchair. To help them understand, I started offering up a smirk and this one-liner:

“The company hired me for my brains, not my brawn, and my brain hasn’t changed.”

As a self-declared nerd and as someone who, ahem, is not known for lifting heavy objects, I usually get a laugh. More often than not, it helps my colleagues feel more comfortable with my illness. I know I’m lucky to work in a career where this response can be both funny and true. If brawn was a big part of my job, as it is with many, I would be unable to perform in my former capacity. Though I most often utter it at work, this line is also effective with my doctor, with friends, and with family.

It’s not a perfect response, but when faced with others’ trepidation about my illness, it does the trick for me. Do you experience these moments? If so, what techniques work for you?

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!