Monday, February 28, 2011

Rare Disease Day

Today is Rare Disease Day. Check out ways you can get involved here.

Having rare diseases is an enormous part of my experience living as a patient, if not the most defining characteristic. Read a more detailed and well-argued version of my thoughts here, in my official Rare Disease Day post from a couple of years ago.

(Because, you know, were I to attempt something like that today, with work and symptoms and pediatric doctor appointments and awful rainy weather and physical therapy, I’d blink and miss posting today altogether. And that would be a huge advocacy fail.)

I will say, though, that the rare disease phenomenon was never more omnipresent than during my pregnancy and delivery. A high-risk, medically intensive pregnancy is one thing. A high-risk, medically intensive pregnancy with rare diseases? That’s a whole other kettle of fish. Limited data, limited testing available, limited understanding and awareness of the disease(s) on the part of health care professionals, and very limited experience working with pregnant patients like me is a natural byproduct of living with rare diseases. Like so many patients, I’ve found it frustrating when practitioners don’t know what I have, can’t pronounce it right, and lump me in with patients whose diagnoses are not the same.

But when that happens and it’s my baby’s health at stake, too? Much harder.

When you live with disease so few people have, you don’t have the same sense of community. You might not ever know someone with your condition in person, and you will likely never see a disease-specific walk-a-thon or awareness bracelet. Sometimes, I feel like the real community we have is the umbrella population of rare disease patients, where we are united by what makes us different.

Today is a day for all of us to show solidarity, to advocate for the research and awareness so crucial to our health.

Thursday, February 17, 2011

Virtual Book Tour: Chocolate & Vicodin

I am pleased to participate in the virtual book tour for Jennette Fulda’s new book, Chocolate & Vicodin. It is a humorous and insightful look into living with chronic pain and the popular blogger and author’s journey to reclaim her identity as more than a patient with invisible illness. Jennette and I did a Q&A, which I hope you’ll enjoy. Be sure to check out the book’s site and watch her trailer, too!

1. I wrote Life Disrupted because I didn't feel there were enough resources out there specifically for young adults with chronic illness. What prompted you to write Chocolate and Vicodin? What did you hope to add to the literature on pain and illness?

Initially, my motivations were fairly selfish. I had decided to write the book regardless of whether it sold or not because writing has always helped me understand my life in a way I never can before I've started typing on my laptop. Writing about my headache helped me find meaning in an otherwise meaningless experience of endless, pointless pain.

Once I'd finished the book, I realized the narrative arc followed me from the initial appearance of my illness, through denial, anger, depression, binge eating, illicit drug use, yelling at my blog readers and finally to acceptance that my life had changed. Ultimately it's about learning to move on with my new life instead of waiting for my old life to reappear. I hope readers with chronic illness gain a measure of strength and hope from that, and readers who aren't sick can understand what people who are chronically ill go through emotionally.

I also hope the story is funny and compelling enough to attract readers who don't deal with chronic illness and thus increase awareness of invisible diseases. I purposely didn't try to cram it full of facts and information about headaches and chronic pain, and focused more on the human experience. I think that's something anyone can relate to if they've faced an unwanted challenge in life.

2. Like your memoir, Half-Assed, Chocolate and Vicodin deals with serious issues yet is seriously funny. How important is humor in terms of living with chronic pain or illness? How long did it take you to get to the point where you could view this journey with some humor?

A sense of humor is a great asset for life in general, not to mention when dealing with illness. I think life is 10% what happens to us and 90% how we choose to respond to that. If you've got a negative attitude, nothing will ever be good enough to make you happy. If you keep a positive outlook and remember how to laugh at yourself, you'll be much happier even if things are crappy. I've always viewed life with a sense of humor. It seems to be my default setting. I think I was just raised that way. Blame my parents.

3. One of the hardest part of living with pain and/or illness is the isolation it can cause. What advice can you give readers in terms of moving beyond that (perhaps inevitable) stage?

We're lucky that there are lots of resources and communities available online. Even if you have a rare or unusual illness, like a headache that doesn't go away, there are other people in the world who have it, too, along with an Internet connection. I've gotten lots of emails from other headache sufferers because I've blogged about my illness. We're able to commiserate, compare treatments, and laugh at the weird advice some people give us. If you reach out, it's likely that someone else will reach back. So, keep reaching out, even if your arm is really, really tired.

4. I know you tried a lot of doctors and a lot of different treatments before you finally experienced some relief. What do you think finally made a difference for you?

I wish there was one magical, miracle cure I could refer to because it would make my answer much shorter. In reality, it's a combination of many things. After 18 months, my neurologist and I have finally found a mix of medications that's keeping my headache down to a 1 out of 5 on the pain scale most days. I also stopped drinking two cups of coffee in the mornings, and I limit my caffeine intake in general. I started using real sugar instead of artificial sweeteners, which I found to be scary since I'd already gained so much weight. Surprisingly, it hasn't caused me to gain any more pounds. I also try to keep a regular sleep schedule because waking up even one hour earlier will give me an awful headache for the rest of the day. It's my most reliable trigger, but at least I have a medically valid reason to sleep in.

5. Patients with chronic pain often face skepticism or dismissal from doctors who either can't diagnose or can't effectively treat/manage their pain. How much of a role do you think gender plays in this? Was it a factor in your journey, do you think? And lastly, what insights do you have for patients still looking for that right fit with a doctor or a diagnosis?

Fortunately, my pain was never met with skepticism. However, I did sometimes feel neglected by my medical professionals and left without guidance. I saw one neurologist to evaluate a venous angioma on my MRI films, and after he told me I was fine he didn't recommend what I should do or who I should see next. It was like his part in the drama of my life was over and he was off to cash his check at central casting. I had another neurologist who recommended Botox treatment for me and submitted paperwork for approval from my insurance company, and then I never heard back from him again. I'm not sure if he even noticed I never came back.

I have a friend who's in medical school, so I know that doctors have crazy schedules. They also have to see a certain amount of patients a day or bill a certain amount of treatments a month to stay in business. I think they're overworked and it makes it difficult to give every patient the high level of care they deserve. That's not an excuse, just an explanation.

Before my headache, I tended to view doctors as God's representatives here on earth, wise and infallible. These days I see them as people with good intentions, but still just people. I used to give them all the power in the patient/doctor relationship, but now I see us as equals working on the same problem together as partners. If I don't like what they're recommending or feel they're not listening, I know I can speak up or go elsewhere. The easiest way to give up power is to think you don't have any. You do have power. Use it.

Thanks, Jennette! Next stop on the tour is This Mama Cooks, so click on over tomorrow for more good conversation.

And speaking of books, don't forget there is one more day to leave a comment here about a positive food allergy/love story and be eligible to win a copy of Allergic Girl.

Monday, February 14, 2011

Food Allergy Love Stories...and a Giveaway!

So, remember when I talked about striving for balance just a few short weeks ago?


Turns out I was onto something with my apprehension, as having a baby, a full-time job, a book to write, and many other appointments, side projects, and health stuff has my head spinning and my alarm clock going off way, way too early.

While I figure out how to make this all work, allow me to resurface just in time to talk about fellow blogger and writer Sloane Miller’s forthcoming book, Allergic Girl. (You can check out her book trailer here, too.) In it, she shares practical, hands-on strategies for living a full life and managing food allergies and symptoms—from dating and dining out to work functions and travel.

In anticipation of the book’s upcoming release, and in honor of Valentine’s Day, Sloane asked some of us food allergy bloggers to think about and share positive food allergic/celiac disease love stories. What’s more, if you share your stories and experiences here, and leave your e-mail in the comments section, you will be eligible for a free copy of Allergic Girl.

Appropriately enough, one of my favorite gluten-free/celiac disease posts from a few years ago is called “Food is Love.” It tells the story of how my husband and I became a couple right after I was diagnosed with celiac disease, and how food played a role in bringing me closer to him and in bringing me back to myself. If you have a second, please click back and re-read it, and then share your positive food stories in the comments section here.

Not only will you have a shot at a free copy of a great book, but you’ll make Valentine’s Day a little more festive ‘round these parts.

This year, I’m navigating a gluten-free, dairy-free, and soy-free Valentine’s, so I am back to making adjustments and accommodations. But, if it means my little girl can continue to breastfeed without getting sick due to her allergies, then it’s totally worth it to me. I suppose that’s a positive food/love story of a different kind, isn’t it?

I’ll be back later this week, and the giveaway goes through February 18, so you have a few days.
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