In My Shoes, 2014 Edition

A blast from the past. I’m flaring HARD right now, and working on a few new posts. But this one, posted first 3+ years ago, feels appropriate to share today. Here are a few new things to add to the below list:

– To explain your illness to new work colleagues?
– To constantly tweak your diet in an attempt to find some relief?
– To spend extra time and money on Eastern medicine and physical therapy every month?
– To plan everything down to the minute in an effort to keep yourself out of a flare?
– To do everything “right”, and end up flat on your back fighting through excruciating pain and fatigue?

I’m sure there are lots more. What would you add?

***********************************

Have you ever imagined how it would feel:

– To require an assistive device to open a jar?
– To be unable to grip a pen or a fork?
– To ask for a child’s help opening a toothpaste tube or bottle of water?
– To be stuck inside a room because you can’t turn a traditional doorknob?
– To cancel plans with friends because you hurt too much to get out of bed?
– To pack a cane every time you leave the house, just in case?
– To shop for a wheelchair as backup for days when you can’t walk at all?
– To eat healthy foods and gain weight uncontrollably because of the drugs you take?
– To inject yourself with medications weekly?
– To require a seat for your shower?
– To purchase a “days of the week” pill sorter to keep track of your meds?
– To endure stares and comments when you park in a disabled spot, because you don’t “look” sick?
– To be unable to move when you awaken each morning?
– To endure a monthly IV infusion for the rest of your life?
– To smile through tears when you encounter a firm handshake or embrace?
– To be unable to wear half the shoes in your closet because the heels are higher than 1”?
– To regularly face drug side effects, including headaches and bouts of nausea?
– To battle extreme fatigue on a daily basis?
– To watch from the sidelines while your child plays in the park?
– To be told you’re too young to have arthritis?

I never did, until I was diagnosed.  Now, these “imaginings” are my daily reality.  I put it all in perspective by remembering my blessings, but I won’t lie.  It’s a constant struggle.  If you know someone with RA, please remember to put yourself in our (very sensible and flat :)) shoes.  Awareness begins when our friends and family understand how this disease impacts every facet of our everyday lives.

Advertisements

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!

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! 🙂

************************************************

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.

 

 

 

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…