Archive for category Symptoms

Magical Thinking: The Lure of New Shoes, Sore Throat Elixirs & Marathons

Magical Thinking #1: I will find the perfect shoe

Let’s start with my favorite magical thinking first: somewhere out there, exists a perfect shoe for us RAers.

I know I’m lying to myself with this one, but the quest is never ending. I love shoes, so, even with the blisters and sore feet pads, it’s a pretty fun quest to be on.

I have two new shoes to test out in the upcoming months: Faux Fur-Lined Tom’s & Yoga Sling Sanuks. The box was waiting on my doorstep as I came home from work today and I seriously did a happy dance. Shoes! 🙂

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So far they’re both very comfortable. I’m bringing both on an upcoming trip, so I’ll let you know how they hold up.

Magical Thinking #2: I can gargle my sore throat away

Way less fun is my sore throat that refuses to subside. It started last Friday and has progressively gotten worse, not better. Despite heaps of vitamin C, garlic, immune boosters, salt water gargling, and my ACV elixir. I was on the fence about whether to skip my Enbrel and methotrexate this week, because both are immune suppressants. My RA symptoms have definitely been more active recently, so I begrudgingly skipped the drugs. Sure enough, today they’re flaring a bit again. So much ugh, only new shoes could cheer me up (see above, yay!).

The surprisingly not awful, throat-soothing, but in no way a cure, ACV elixir recipe:

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  • A generous splash of organic apple cider vinegar
  • A dash of cayenne pepper
  • A dash of ground giner
  • A heap of honey
  • A squeeze of lemon
  • Enough hot water to mix it up and make it palatable

Magical Thinking #3: I’m ready to start training for another marathon

It’s counter intuitive, I know. I’m sick, my RA symptoms are flaring, I just bought two new pairs of shoes and they have nothing to do with running…. But there’s something about being stuck on the couch that makes me brainstorm big goals. I’ve mapped out a 10k in May, a half marathon in July, and marathon in October.

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We’ll see. The timing may change and the races may change, but I’m motivated to push myself to train for something, despite (or maybe because of) the pain!

 

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‘Tis the Season to be Screwed by Insurance

Ah, late December. A time of beautiful lights, giving, and the great health insurance scramble.

As co-founder of my company, I’m lucky enough to have a huge impact on choosing the health insurance we provide. One of the deciding factors for me is being able to get my Rheumatoid Arthritis drugs at a low co-pay. Through United Healthcare, it’s been $10 per month for methotrexate, $10 per month for folic acid, and $30 per month for Enbrel.

In other words, $50 a month for drugs. A reasonable-enough price to pay for my health. It is the number one reason we decided to keep our UHC plan for 2015.

So shock me, shock me, shock me (Any Empire Records fans? Read on, there’s a gif for you below.) when I get a letter saying that beginning January 1, 2015, Enbrel will be considered a “Tier 4” drug and will not be eligible for the Enbrel Assistance program. After some digging, I found out that this means it’s going up to $250 per month with no opportunity to enroll in any payment assistance programs Enbrel provides.

What? Merry Christmas to you too, United Healthcare.

Their advice? Try another drug.

That’s all good and fine. They’re willing to cover Humira or Cimzia, but I’m feeling pretty violated. I know violated may seem like a strong word for this situation, but that’s how it’s feeling. I’m being forced to put an unknown drug into my body because my healthcare has made an arbitrary change to their coverage. Enbrel is a known quantity for me. It’s effective in treating my RA, side effects are pretty minimal for me, and my body is used to it. Humira and Cimzia are not.

Not to mention, my rheumatologist claims that though the risk of switching is “probably pretty minimal”, there is a risk that I could lose the efficacy of Enbrel if I ever need it again. Joy!

So, have any of you RA folks made the change from Enbrel to Humira or Cimzia? How did it go? Are any of you on Humira or Cimzia? How did you like it?

Thanks for all your input and Happy Holidays to you all (in the non-grinchy, healthcare-trying-to-screw-you way, of course!)

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Hope, Acceptance and a New Normal

Oh man, I’ve been neglecting this blog! Sorry guys. There’s nothing like that three month rheumatologist appointment to remind me to get writing!

I’ve been thinking a lot about the journey I’ve been on with my RA. I went from the fear that came with diagnosis, to dogmatic hope and determination that I could get rid of said pesky diagnosis, to bleak acceptance, to a sort of new normal.

That new normal is what I want to talk about. I think it probably looks different for everybody.

But, at any rate, here’s what my new normal means for me:

  • it means I normally operate with an acceptance of my disease – it’s chronic, it’s painful, it ebbs and flows
  • it means I still hold onto the hope that better scientific research may lead to better treatments and possibly a cure
  • it means that I constantly remind myself that “chronic” is just a word. Diseases change and even chronic ones may go away
  • it means that I am almost ALWAYS uncomfortably aware of my body. At moments when I want to focus, my feet are screaming (like recently standing during the funeral of a friend…I wanted to be focused and be there for all the people who loved him, but there were my inflamed feet, in pain and begging for my attention). At moments when I want to be serene and zen (like in yoga classes when my wrists are acting up).
  • it means that some mornings my feet and hands don’t work the way they should. They’re frozen, sore, and just not ready to start the day
  • it means feeling that I’m constantly balancing the desire for understanding with the desire to not burden others by complaining. Usually I stay quiet.
  • it means I have a new relationship with some powerful drugs. Drugs with life-changing results and uncomfortable side effects
  • it means I am a whole lot more patient with myself and others
  • it means that not a day goes by when I’m not grateful for my body, my mind, my life and my loved ones

What does your new normal mean for you?

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Invisible Illness Week: 30 Things You May Not Know…

Rude Awakening posted some great answers to the “30 Things You May Not Know About My Invisible Illness” questionaire in honor of Invisible Illness week: Invisible Illness Week: 30 Things You May Not Know….

She also reminded me, it’s that time of the year again! My answers are below.

30 Things You May Not Know About My Invisible Illness

1. The illness I live with is: Rheumatoid Arthritis (plus Raynaud’s Phenomenon and Chilblains)
2. I was diagnosed with it in the year: 2012
3. But I had symptoms since: I noticed what I now believe were RA symptoms as far back as 2009. I’ve had Raynaud’s since at least age 14, though possibly much longer. Chilblains began in 2012.
4. The biggest adjustment I’ve had to make is: Slowing down more often to give my body a break.
5. Most people assume: I’m fine now that I’ve been to the doctor, because I’ve gained weight back and look healthy. They don’t realize that I’m treating symptoms that are chronic and occasionally flare even with treatment – I haven’t “cured” my disease.
6. The hardest part about mornings is: This absolutely depends on the day! Some days mornings are the best, some I have so much fatigue and stiffness I don’t want to move.
7. My favorite medical TV show is: Scrubs!
8. A gadget I couldn’t live without is: Comfy flats and boots, a jar opener, and warm socks and gloves!
9. The hardest part about nights is: Some days it’s fatigue, some it’s pain, some it’s just knowing I have to get up the next morning, some are totally fine.
10. Each day I take 4-15 pills & vitamins.
11. Regarding alternative treatments I: I love acupuncture and find it helpful and relaxing. Would if I could get more massages! I watch my diet and have cut down on many inflammatory foods, including dairy and gluten. I incorporate anti-inflammatory food/supplements into my diet as much as possible: ginger, turmeric, cinnamon, omega 3s. Perhaps most importantly, I try to do something active most days. On rough days, it may just be a very short walk, on good days, it’s runs, swims, boot camps, dance or yoga.
12. If I had to choose between an invisible illness or visible I would choose: Invisible, even though it can be frustrating. Some days I look and feel normal and am able to forget about RA. Those are the best. Plus, being a private person, I prefer being able to choose whether or not I want to share my illness with others. Its invisibility affords me that choice.
13. Regarding working and career: I’m an entrepreneur working on a tech start-up that I co-founded. This means I  likely work harder under more stressful conditions than my health and doctor would like. It also means I’m able to work flexible hours that allow me to make my doctor’s appointments and work from home on bad days (even from bed sometimes!). I try to remember to take time to myself to rest and replenish and focus on being healthy.
14. People would be surprised to know: I agree with Rude Awakenings: “Fatigue is as debilitating as pain – some days more so. And I feel like a definition is needed here.  Fatigue = flu-like symptoms, not simply being sleepy.” On days with bad fatigue I struggle to do anything, including just talking to the people I love.
15. The hardest thing to accept about my new reality has been: Relying on drugs to feel well and accepting my body’s limitations on rough days.
16. Something I never thought I could do with my illness that I did was: I agree with Rude Awakenings here too: “Talk about it so openly.”  When I was first diagnosed, I didn’t think I’d be educating people on my illness or reaching out to strangers!
17. The commercials about my illness: All feature older adults, seemingly in their 60s. They perpetuate the myth that Rheumatoid Arthritis is the same as Osteoarthristis and mainly effects older populations.
18. Something I really miss doing since I was diagnosed is: Not having to wonder how an activity, meal, or drink will effect my RA or interact with my meds. Not having to plan my life and trips around bi-weekly medication, bi-monthly blood tests, and tri-monthly doctor appointments.
19. It was really hard to have to give up: Control over my body. Oh, and dairy, gluten, alcohol and heels (I still enjoy all four in moderation).
20. A new hobby I have taken up since my diagnosis is: Blogging!
21. If I could have one day of feeling normal again I would: Similar to last year – I would just go, go, go all day and night, not worrying about lack of sleep, stress on my body, any of that.
22. My illness has taught me: Celebrate the good days and all that my body does for me. Always be patient and kind to others – invisible illnesses are a good reminder that you really don’t know what others are struggling with!
23. Want to know a secret? One thing people say that gets under my skin is: Agree with Rude Awakening again, absolutely this: “When people equate their grandmother’s osteoarthritis (or their own!) in her wrist to my autoimmune disease.”
24. But I love it when people: Ask me how I’m doing even if I look fine and want to learn more. I also love when people share their own experiences with autoimmune diseases or offer to put me in touch with friends who also have RA.
25. My favorite motto, scripture, quote that gets me through tough times is:  I have many. Here’s a kinda nerdy one: “We take what we can get, Champ, and we do our best with it.” – Cordelia Chase. Another one along the same vein: “Do what you can, where you are, with what you have.”  – Teddy Roosevelt
26. When someone is diagnosed I’d like to tell them: It gets better. The pain will decrease when you find the right meds. The loneliness will start to dissipate when others with RA come out of the woodwork and you find online communities to connect with.
27. Something that has surprised me about living with an illness is: Most people, even those close to you, do not want to think or hear about your illness. Everyone prefers to think that all’s well.
28. The nicest thing someone did for me when I wasn’t feeling well was: My boyfriend does this well: we’ll order in and watch a movie, and he won’t let me entertain thoughts of guilt over all that I didn’t accomplish that day.
29. I’m involved with Invisible Illness Week because:  I want to create more awareness and understanding of autoimmune diseases. There’s so much that is unknown, underfunded and misunderstood.
30. The fact that you read this list makes me feel: Grateful. Thank you for taking the time, and for your support of Invisible Illness Week!

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Shake It Off: Life with Tremors

Mine hit me right around the time that my Raynaud’s decided to show it’s full colors (no really, my hands were fantastic colors of red, white and purple). Why? Probably because I was 14 and my hormones were raging.

Whatever reason, come awkward adolescence my hands began to shake. It was worsened when trying to hold something, particularly something that was either extraordinarily delicate or scalding. It was made even worse when there was an audience or I was nervous or embarrassed. As you can imagine, class presentations were my worst nightmare.

And needless to say, awkward adolescence just got a whole lot worse…

On really bad days my head would try to shake itself off my neck. But mostly, it was my hands, with their omnipresent jitter.

Unlike when I was diagnosed with Rheumatoid Arthritis, I knew exactly what I was in for. About half the aunts and uncles on my mom’s side have these same shakes. In fact, many people around the world do. It’s called an Essential Tremor and it can cause your hands, head or voice to shake. We don’t know why and we don’t have a cure (sound familiar?).

One aunt has a particularly bad rendition – her head never pausing. So I was filled with a sense of dread and acceptance when I noticed them in myself; I was one of the unlucky ones, stuck with the shakes and destined to have it for the rest of my life.

To my surprise, by age 16 my Familial Essential Tremor had all but disappeared. Occasionally my hands would shake a bit when I was especially nervous, but it was nothing compared to what it had been a few years earlier. People stopped pointing it out. I was ecstatic.

It’s basically been a non-issue since then. But now suddenly, at the age of 31, I seem to be a bit shakier. It’s not bad enough that it’s affecting my head, but it’s been bad enough to spill hot coffee while pouring, to have people comment and stare yet again, and for me to have flashbacks back to those rough adolescent years.

Like RA and Raynaud’s Phenomenon, there is no cure for an essential tremor. It’s just … a condition. A genetic mutation, according to the Mayo Clinic.

So, what can I do? Well, avoid caffeine, alcohol and stressful situations, for starters. But, since that’s not going to happen for me right now, I’m sticking to hoping that it’ll mysteriously disappear, the reaction to a 30-something’s hormone cycle, like it did when I was 16.

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A Shoe Story (Part 2)

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My RAD first presented itself in my wrists. Later, it moved to my feet, with a vengeance. Though it is now mostly under control with weekly methotrexate and Enbrel, I do still get the occasional flare. For me, this usually means very sore and painful wrists and feet, swelling, morning stiffness, and all-encompassing, is-this-what-having-mono-is-like fatigue.

I recently came back from an incredible two-week trip to Southeast Asia. (Side note: not needing to keep my Enbrel refrigerated was a lifesaver.) But the best part about the trip was, despite long days walking many miles (I think I hit 10 miles one day in Bangkok and probably a comparable amount at Angkor Wat), I only experienced swollen, sore feet, not a full-blown flare.

The return jet lag has been pretty rough and I think it wore my body down. I was exhausted and sleeping every chance I could get for about a week. I was finally feeling more like myself. Until Thursday.

Last Thursday, I felt the inkling that something was stewing. My feet were just a little more swollen and sore than they ought to have been. I decided to go for a short run anyway, because I’m still the worst at figuring out when to rest and when to push.

Then Friday came and my feet were so sore and stiff getting out of bed that I almost fell over. I combated it with a long shower and an outfit designed to incorporate comfortable Crocs Mary Janes, which were a half-size too big to accommodate for swelling.

Halfway through my 3/4 mile walk to the office, I felt blisters forming in addition to my already aching feet. I hobbled through.

Come lunch, I couldn’t take it anymore, so I spent my lunch break shopping for a new, more comfortable pair of shoes at a nearby store. My feet were so swollen, most the shoes in my size didn’t fit (including flip-flops!). I wound up with well-insulated Reef slip-ons.

I was invited to post-work food and drinks with co-workers, which I achingly accepted. A glass of wine did make me feel a whole lot better.

Afterward, I stubbornly wanted to have a fun night out with my boyfriend. I hung for a couple hours until I just snapped. “I’m going home,” I announced, starting to cry. Of course to him, this appeared bat shit crazy, but all I knew was that if I had to spend one more second in any sort of footwear, I was gonna scream.

We talked outside and I explained myself. That sounds way more graceful than it was…I actually whined through my tears about my feet and my frustration and how I just really, really needed to be home.

“I wore my ugly Crocs because I knew it would be a rough day and they’re supposed to be comfortable, but they attacked me with blisters! My feet were too swollen to fit into flip flops that were a size too big! Flip flops!” I lamented, my boyfriend trying hard to understand how shoes, yes shoes, could bring his otherwise composed, mature girlfriend to tears. (Of course this is the moment a friend walks by, but I didn’t have the energy to explain, so I assume she thinks we were having some terrible fight).

I got home and soaked my feet, but that didn’t stop this flare from stealing my whole weekend. It was all I could do to leave the couch Saturday for a lunch date with the bf. Today has been equally sore and exhausting. I’m sincerely hoping tomorrow treats me better.

Interested in more tales of shoes driving me utterly mad? Check out A Shoe Story Part 1.

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Rheumatoid Arthritis and All the RAD Diseases Correlated With It

I was recently diagnosed with the beginning stages of gum disease. At 30.

Though totally treatable, it means going to the dentist WAY more often than I’d like (every 3-4 months), more expenses, and another item to add to the list of things I need to spend extra time caring for.

Maybe it’s because of my wisdom teeth removal complications, which led to a few months of less-than-stellar teeth care. Or maybe it’s because I have RA and my body is prone to inflammation.

Gum (periodontal) disease, as it turns out, is one of the many things more common in people with RA. Others include fun stuff like heart disease, depression and poor concentration (which I have definitely been noticing recently, but hadn’t bothered blaming on my RA).

One study found those with RA are more than twice as likely to have gum disease (65% or the studies 91 participants who had RA also had gum disease versus 28% of those RA-free). And, of those who had it, it tended to be more severe.

There’s also some that believe gum disease is not only correlated with RA, but can LEAD to it.

So what, aside from a propensity for inflammation, is causing this link? Well, some scientists have found that porphyromonas gingivalis (PG), the bacteria involved in gum disease, also produces a specific type of enzyme and it’s this enzyme that promotes the progression of collagen-induced arthritis. The enzyme triggers changes in the body’s proteins, which then causes the body to mistakenly attack those proteins. The result is chronic inflammation.

PG works in much the same way as the anti-citrullinated protein antibodies (ACPA) found in some patients with RA. In fact, those with RA who have ACPAs have higher rates of gum disease. It all gets pretty complex, and the studies are relatively new, but you can read more here.

Apparently relating the teeth and gums to other ailments is by no means a new thought. Hippocrates was known to suggest pulling teeth as a cure for arthritis.

The moral of the story is two things we already knew:

  1. brush your teeth and floss religiously, and
  2. having RA and all that goes with it is no fun.

Oh, and don’t smoke. That apparently raises your chances of both RA and periodontal disease. But I’m tired of reading that, as I’ve never been a smoker.

Anyone else have RA and gum disease? I’d love to hear about your experience!

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Mastering the Impact of Fatigue in Rheumatoid Arthritis – HSS.edu – Hospital for Special Surgery

I was going to write a blog post about how today I just feel exhausted, slow,  off, and really irritated about it. My wrists hurt, my fingers hurt, my body’s heavy, and I’m just tired. Too tired to write a post about it, but this article sums it up better than I could right now anyway:
http://www.hss.edu/conditions_mastering-impact-fatigue-ra.asp#.U1mkqZdME-o

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Optogenetics Makes Mice Resistant to Pain | MIT Technology Review

http://www.technologyreview.com/news/524771/for-mice-and-maybe-men-pain-is-gone-in-a-flash/?utm_campaign=newsletters&utm_source=newsletter-daily-all&utm_medium=email&utm_content=20140217

It’s not a cure, but a better way to manage pain could certainly change the lives of millions of people.

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‘Tis the Season to Plan Races

I have running on the brain.

This is probably not the best thing to be thinking about, as I promised myself that due to last year’s Chilblains, this year, I would take a break from running in the cold. Well, guess what, it’s January and it’s cold, but I want to run! And no, the treadmill just doesn’t cut it for me.

The weather was nice this weekend, so I went for a gorgeous run on the mesa. The only problem is that there were still puddles and a bit of snow coverage.

Running along the Mesa

A gorgeous weekend run has me inspired.

Anyway, I think that run, combined with two days of skiing prior and one day of wearing my favorite, not-so-comfy boots post-run (But they’re vintage!! How can I say no to them when they stare at me from the closet that way?) was the perfect Chilblains trifecta. Sure enough, my toes are painful, swollen, itchy, red and purple. 😦

It hasn’t stopped me from wanting to run however, it’s just getting me dreaming of warm runs and destination races. And in my daydreaming, I am imagining crossing the finish line on my second marathon. This time sub 4:30.

I’ve been looking, and the Medoc Marathon sounds like a blast. A run through French vineyards with wine and cheese served at water stops? Mais oui, s’il vous plait.

Marathon du Medoc

Marathon du Medoc

Is anyone else planning a big race for 2014? Has anyone done the Medoc? And most of all, anyone out there a runner with bad circulation and/or Chilblains who has advice that doesn’t involve the treadmill? Merci beaucoup!

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