autoimmune

Impossible Choices…RIP Glenn Frey

For those of us struggling with autoimmune disease, Glenn Frey’s death hits especially hard. In case you haven’t heard, Mr. Frey suffered with Rheumatoid Arthritis (RA) for 15 years. And based on what I’ve read, Mr. Frey had long taken powerful biologic drugs to slow the progression of his disease. These medications suppress the body’s immune system, which seems to have caused him to contract both acute ulcerative colitis and pneumonia. And his pharmaceutical-weakened immune system wasn’t properly equipped to fight back. Often, that is what “complications from rheumatoid arthritis” means.

 

This news was a sobering reminder of the impossible choices we patients face. So, I shared my thoughts on FB earlier today, and wanted to repost for all of you here:

In early 2012, the heavy drugs I take for RA disabled my immune system from fighting back against the flu. I ended up in the ER with sepsis, and required life-saving measures. This is the catch-22 of current treatments for autoimmune disease. Without the drugs, many people with severe RA (like Glenn Frey and me) cannot perform daily tasks, or even get out of bed. With the drugs, we are at greater risk of developing other illnesses, and our immune systems are so suppressed that we have a hard time fighting them. Beyond that, the drugs are very costly, they treat but don’t cure our diseases, and despite the commercials, they often only provide partial relief. So, it’s easy to understand the love/hate relationship we have with these drugs.

Thousands of stories like Mr. Frey’s, along with my own, motivated me to start this blog in Jan 2011, with a goal of raising awareness and helping others battling RA. They are why I constantly seek new Eastern and Western options for treating my disease. They are why I practice gratitude daily and strive for a healthy, positive mindset. They are why I fuel my body with amazing nutrition everyday, to give it the best chance to fight back. They are why I share that nutrition with everyone I meet.

These pharmaceutical treatments are a key part of my toolkit, and I am grateful that they help me get out of bed most days. But I refuse to rely on them completely, and Glenn Frey’s story illustrates the truth of these impossible choices, and why we must keep searching for answers. Thank you for the music. RIP.

 

 

 

 

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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!

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.

Evolution in Reverse

Regular blog readers know my feelings on the connection between diet and health. I started my journey to discovery about 3.5 years, ago, when I went gluten-free. Ever since, I have pushed to find the root cause of my body’s mission to attack itself in myriad ways, and further modified my diet. These days, I’m evolving my diet in reverse, and eating mostly like a cavewoman.

Paleo is very hot right now. The New York Times even did a recent article featuring Michelle Tam of Nom Nom Paleo, one of my favorite cavewomen. Despite the fad, there are real health benefits behind it, especially for those with autoimmune disease.  I’m talking science-y stuff here. Since I already ate mostly whole foods, and I had already cut out gluten and cow’s milk dairy, I decided to try a one month experiment with my own version of this diet. Here’s what my “mostly cavewoman” diet has looked like for the last month:

What I Eat (Regularly, 85-90% of my diet):

  • Grass-fed and/or organic meats at most every meal:
    • Beef
    • Bison
    • Pork
    • Bacon (Nitrite-free, Sugar-free)
    • Fish (Salmon, tuna, cod, grouper, snapper, flounder)
    • Shellfish (Shrimp, crab, mussels, oysters)
    • Chicken
    • Turkey
    • Organic eggs (pastured when I can get them)
  • Lots and lots of vegetables (6-8 cups every day). Here are some of my favorites:
    Mmm....veggies!
    Mmm….veggies!
    • Broccoli
    • Cauliflower
    • Spinach
    • Kale
    • Potato
    • Sweet potato
    • Zucchini
    • Cucumber
    • Onion
    • Cabbage
    • Winter squash
    • Avocado
  • Whatever fruits are in season. I’m lucky to live in Florida, where it’s always growing season. I also love frozen berries, especially in smoothies.
  • Nuts and seeds
  • Organic almond / coconut milk
  • Organic, non-GMO soy milk
  • Gluten-free organic Tamari soy sauce
  • Ghee
  • Olive/coconut/avocado oils

What I eat occasionally (10-15% of the time):

  • Brown / jasmine rice
  • Beans
  • Honey
  • Sheep / goat’s milk dairy products (products = cheese)
  • Dark chocolate
  • Wine
  • Coffee and tea

What I Don’t Eat:

  • Processed foods of any kind
  • Foods with added sugar / artificial sweetener*
  • Gluten-containing products
  • Cow’s milk dairy products

* A note about sugar: This beast is addictive, and it is everywhere. I do not cook with sugar, and I limit the amount of sugar everywhere I can, but it’s not a perfect science. I also confess to enjoying a Diet Coke from time to time. I know, I know. Soda with aspartame is the worst kind of transgression! But it’s a long held vice, so for today, I choose limits over total deprivation. Also, I’m human. Let the hand slapping commence…

If you made it through the lists, you’ll notice that my diet resembles Paleo. That is by design, but there are a few key differences:

  1. Wine: Strict Paleo diets remove alcohol, but a few times a week, I enjoy a glass (or two) of good red wine. It’s soul satisfying to share an evening, and a glass of wine, with my wife after a long day. We’ve also made a hobby of discovering new ones together. Unless I am desperate, I won’t get rid of it.
  2. Soy: This is my biggest daily variation from pure Paleo. I am aware of the issues regarding soy. I buy the best products I can, all organic and non-GMO, and I do not use it excessively. My wife has a coconut allergy, so our family meals cannot include coconut, whether aminos, milk, or oil.

    Homemade meat sauce over zoodles, with bonus Pecorino!

    Homemade meat sauce over zoodles, with bonus Pecorino!

  3. Brown/jasmine rice: I’ve tried, but I really can’t get down with cauliflower rice. I adore roasted cauliflower, and I love zoodles, but I am also okay eating brown and jasmine rice from time to time.
  4. Potatoes: Though potatoes were recently added to the Whole 30 protocol, many Paleo folks choose not to eat them. For me, they’re pure comfort food to my Scottish blood,
  5. Beans: Since I started eating this way, I haven’t really craved beans. However, I’m keeping them on the list for now, because they’re delicious, and because there is conflicting evidence about their nutrition.
  6. Non-cow dairy: A small hunk of manchego, gooey goat cheese on a bunless bison burger, or a bit of shaved pecorino romano over zoodle pasta with meat sauce can make my day.

This is what works for me. Some of the foods are verboten, but I don’t pretend to be a Paleo purist. To this point, I haven’t adopted the autoimmune protocol (AIP) either, though I’m not ruling out a trial down the road. And my diet evolution has been wildly successful. In just a month, my energy is up. My digestive problems (just going from gluten/dairy free to mostly cavewoman) have been reduced by 60-70%. I’ve even lost a few pounds, though thanks to age and Prednisone, weight loss is a maddeningly slow process.

Right now, my major obstacles revolve around eating this way on the road, and making time to cook what I eat. I’m still wrestling with both. In my next post, I’ll share what I’ve learned so far, and will give you a list of caveperson resources I love. Until then, I’m heading back into the kitchen!

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!

I Want To Do What Frozen Things Do….In Summer!!!

Okay, I really just want to BE perpetually frozen right now. Maybe Queen Elsa can help? Or maybe I’m just dreaming of a visit from Idina Menzel. 😉

Right now, my weather app is reporting the same news. Every day.

Feels like 106 degrees?!

Feels like 106 degrees?!

As they say, it’s not the heat, it’s the humidity. When the index is at 74%, and the “feels like” temperature is well into triple digits, it’s truly oppressive. It’s the kind of heat that makes it hard to breathe because the air is so heavy, the kind that causes you to sweat just walking from your car into the house. Alas, these are the joys of Florida in summer.  And for those of us on steroids and other RA medications, it becomes impossible to stay cool.

My body temperature has gotten so out-of-whack that my Eastern medicine doctor has prescribed something called “Quell Fire” for me. It’s a Chinese herbal mix, and it really does help.  I also love my Frog toggs towel, powerful electric fans, swimming pools, and when I get desperate, ice packs. But until things cool off around here, I’ll be forgoing outdoor activities whenever possible. A/C is a lovely thing.

What tricks do you have for staying cool in the heat and humidity of summer?

 

 

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.

 

 

 

What’s it Like to Have RA?

I’m in the middle of a bad flare, currently trying to get work done from bed. As I was thinking about how to describe how the feeling to my colleagues, friends, and family, I came across this video:

Wow. What a help it would be if, as part of their training, our rheumatologists all wore a suit like this for even half a day! It cannot simulate the pain, of course, but it can provide some idea of what this crushing, invisible disease is like for their patients. Unlike an RA flare, the suit is predictable, and you can remove it anytime you like, but I applaud Dr. Hamburger and his team for dreaming this up.

Travel and Chronic Illness

sunsetat35000feet-nov2013

There are some benefits of air travel. This was my view of sunset on today’s flight to Seattle.

As the holidays approach, I’ve been thinking a lot about travel.  Anyone with chronic illness can tell you that the thought of travel is as exhausting as it is exciting.  The change to routine, the long flights, the additional medications, the stress of being away from doctors and the comforts of home — they don’t even begin to cover it.  And like everything else we face with chronic illness, the amount of planning required to travel successfully can be overwhelming.  Add that to the stress of the holiday season itself, and it can be a recipe for major flares, serious illness, or worse.  It was just after the holidays two years ago when my run down body caught back-to-back bugs, and I ended up septic and in the ICU.

This is the first year since that incident that I’m traveling at the holidays, so this topic has been on my mind.  My life looks eerily similar — I am back to working full-time, still dealing with uncontrolled RA, and traveling for both Thanksgiving and Christmas.  I’m smarter about my illness now, and less likely to keep pushing (I think). But, I can use some crowdsourcing too. 🙂 So, I’d like to find out what you’re up to this year, and collect wisdom from the group for a holiday post on managing travel with chronic illness.  To kick it off, here’s a short poll.  If you can spare a minute, I’d love to hear about your plans.  Please leave comments too!

I’ll compile our collective thoughts into a post, and we’ll try to learn from each other.  This is my favorite time of year, and though I will make sure I take care of myself, I refuse to do anything other than enjoy the season to the fullest!