Thursday, December 17, 2009

Thyoliday Blues and Truths




Thyroid diseases and thyroid cancers are fun, right? Unfortunately not; they deeply affect us as patients and our families, indelibly leaving an imprint on our minds, bodies and souls. None of it is easy. If we’re going to bring awareness to this disease, we have to come together as a family. Our collective voices have the power to invoke change. Because the holidays are a time of celebration with the people we love and a time to reflect, what better way to ignite change, and move our stories forward, oh and have a laugh along the way, than to connect with each other?

Have the holidays and your experience of them changed since you've been diagnosed?
Yes! In addition to thyroid disease, I have celiac disease, primary ciliary dyskinesia (a progressive, rare genetic lung condition), bronchiectasis (another lung disease), and other odds and ends. I’ve been sick since birth, but was not diagnosed accurately with most of these conditions until my early twenties. I used to spend weeks in the hospital every year, and spent several Christmases in a row in the hospital, including one Christmas Eve being transported from my hometown hospital to my large city hospital in an ambulance.

Now that I know what I’m dealing with and have different treatments, I’m not in the hospital as much. I’m still usually sick at Christmas, but I’m at home when I am!

What is your favorite holiday food/dish from childhood? What is your favorite dish now? (Did you have to change your diet at all since being diagnosed?)
We used to have a big Italian feast with our extended family on Christmas Eve, and I loved my Nana’s baked stuff shrimp and my mother’s chicken parmesan. I was actually diagnosed with celiac disease right before Christmas one year, so that first holiday was tough but since then we’ve all adjusted. I bring a risotto dish that is now a crowd favorite, and there is always a protein cooked separately (and with no cross-contamination) for me. I appreciate the effort people make for me, and I like that I’ve introduced them to new foods they enjoy.

Off the top of your head, is there one comment from friends or family that sticks out in your mind as a what-were-they-thinking kind of thing that brought your disease front and center for everyone at the holiday function to hear about?
Not really. Sometimes there is still some confusion about what is/isn’t gluten-free, but it’s never anything malicious—usually just someone telling me I can’t eat potatoes or rice when I can. There is a lot of serious illness in my family (and a lot of thyroid disease, too), actually, so we’re all sort of used to it. We just avoid asking, “How are you feeling?” at holidays.

How do you get through the stress of the holidays, paired with a disease? What are your coping strategies?
It’s such a busy, germy, chaotic time of year that I am usually sicker to begin with, so I need to keep those factors in mind and just pace myself. I do a lot of shopping online so I don’t have to be out in the crowds, and I make lists so that when I have the energy, I know exactly what I need to do and buy.

Do you feel the need to enlighten and educate your loved ones about your disease when you get together for holidays, as people are often curious about our illnesses? If so, how do you educate them?
Sometimes, yes. As I mentioned, the food issues can confuse people. My immediate family understands my other conditions well, but when you have very rare diseases, there is always a lot of education involved. People who don’t see me day to day might not understand how quickly I can go from okay to pretty sick, or just how many weeks an infection can linger. Conversely, sometimes I have a terrible-sounding cough but actually feel pretty good, and that can be confusing, too, I think.

Has your disease ever showed up at the wrong time on a holiday and ruined the day or moment?
Yes! Christmas as an inpatient (or in an ER isolation room, or an ambulance) tends to have a dampening effect…

Have you thought about submitting a letter to Dear Thyroid? If so, would your letter be a love letter or a hate letter? Would it be to your thyroid or from your thyroid?
It wouldn’t be a hate letter…more a letter of mutual understanding: I’ll do what I can for you, my slow-moving thyroid, and you keep doing your best for me.

If you could tell the world one thing about thyroid disease (or thyroid cancer) that you feel they don’t understand, what would it be?
It can be really difficult to diagnose—I think people think if one baseline blood test comes back “normal” the case is closed. Not true! I also don’t think people realize just how much the thyroid is responsible for, and how completely out of whack your body can be if your levels are not correct.

What is the greatest misconception regarding thyroid disease and thyroid cancer?
I think people sometimes consider thyroid disease a quick fix—you take the test, pop a pill, and that’s it. Now, while I like the fact that of all my conditions this is one where I can actually take a pill and it makes a big difference, it isn’t that simple. Patients need to monitor and maintain their dosages, and lots of things (other medications, certain foods, etc) can interfere with the correct dose.

What is the stupidest thing someone has said to you regarding your illness that, to this day, still makes you laugh or makes you angry?
I’ve had doctors tell me that my lungs are bad because I’m stressed out or not taking my asthma medication (um, no, probably it’s because of the two progressive lung diseases, neither of which is asthma, but thanks!). I’ve also had people say really rude things about people with chronic illness in front of me, without knowing my situation: people who are sick shouldn’t have children, they would never marry someone who was sick, etc. Awkward! I usually just fume about it with my husband later.


Dear Thyroid is a literary thyroid support community and blog. Thyroid patients are invited to submit Dear Thyroid letters; love letters and hate letters, among other thyroid literary things, such as Thyrants, Thygraphs, Thykus, Thyetry and Thysongs, etc. Our goals are for all of us as a community of patients to connect with each other and our diseases, and to bring awareness to thyroid diseases and thyroid cancers, we need and deserve a face and a voice. For our non-literary crew, we have monthly Flickr pools. Recently, we launched Dear Thyroid Local Meet Ups for offline support. Dear Thyroid Forums are forthcoming in December.

8 comments:

Dear Thyroid said...

Laurie;

This is such a great post. Thank you for participating in the blog tour. You're amazing, such an inspiration.

I must tell you, I was SHOCKED when I read what you wrote "People with chronic illnesses shouldn't have children." I know I shouldn't be shocked because people stay stupid, vile things like that all the time. Stupidity on that level still surprises me.

Keep up the great work that you do. You are an inspiration to all of us.

XO
K

Laurie said...

Thanks so much for the comment and for inviting me to participate, Katie.

I know, those comments are shocking!! Sometimes people mean them in the sense of passing along faulty genes, other times I think it's a quality of life issue in their eyes. Who knows. Ignorance never ceases to amaze me. And the kicker? People can be so blase and say these things at social events, like it's nothing.

I just remind myself to consider the source...

Rosalind Joffe said...

I have "thyroid" disease but since I've had so many other autoimmune issues, I've ignored it since I take a pill. But these are great points that I never thought about.I,too, have family with disease so they "Get It" and it does help. But being among those who don't get it, especially in this season, is tough. I wrote this in my blog, Misery Loves Company (http://WorkingWithIllness).
I hope you-- and all of us fellow travelers - stay well for now. Wishing you happy holidays.Rosalind

Laurie said...

Hi Rosalind,

I totally hear you...because my thyroid condition is very well managed (and, in my case, easy to manage) I don't think about it the same way I do my other conditions, which are more disruptive and incapacitating. I take my pill, and check my levels regularly, and I'm doing great.

But that's not to say I take my thyroid for granted: when I first started my medication, the difference in energy I felt was like not knowing you had poor eyesight and then wearing glasses...you didn't know how bad things were till they weren't anymore!

Amy said...

Good for you Laurie! I have really enjoyed reading all these a's and q's. I cannot believe someone would actually say things like you shouldn't have children or love if you are sick! Bah to them! Those are the joys that get me through sometimes and give me more will power and determination to get and stay healthy! You seem so positive! Thanks for sharing!

ShareWIK said...

I love your blog, it's very encouraging and informative!! I added a Chronic disease community on my website, shareWIK (share What I Know) and would love your input! ShareWIK is an online community bringing together people of all areas of expertise so that they can share what they know. Keep up the great work, and we would love to hear from you!

allnaturalthyroid-user said...

Your blog is very interesting.Im a 37 yr old momma of two young girls .I was diagnosed with underactive thyriod 9 months ago. Have put on 3 stone got no energy suffer from depression.

wheelchairs said...

I really appreciate your post and you explain each and every point very well.Thanks for sharing this information.And I’ll love to read your next post too.

 
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