#HAWMC Day 13: Weekend Update

Wego Health’s #HAWMC2016 prompt for today is:

“What’s the best thing that happened to you this week? Maybe you got great news or maybe ice cream was on sale- write about it and relive it!”

My answer may seem ridiculous, but the best thing that happened to me this week was . . . Are you ready for this?

Brace yourself.

It’s pretty exciting.

I SLEPT. 

After nearly eight months of sleeping less than four hours a night, miraculously, I just started sleeping again. All. Night. Long. Uninterrupted. I’m savoring those words as I type them. 

Before you think, “Wow, this girl really needs a life,” let me be clear. Lots of great things happened this week. I met two new neighbors, and I’m super excited to get to know them better. I ate a lavender crème brulée with fresh blackberries. At my doctor’s appointment, I was stunned to learn that, somehow, quite accidentally, I lost 10 pounds since August. On Friday, my husband took a half day of vacation, and we had a date-night dinner together at a little French restaurant. On Saturday, we bought a car. The weather was spectacular this morning, and we took the dogs down to the lake and watched them romp and play in the water, laughing at their wide doggie smiles, floppy tongues, and waggy tails. We moved a month ago, and just this week, things have really started to come together. We love our new home, and we’re beginning to feel settled.

But I would not be able to enjoy any of it without sleep.

I was diagnosed with Hashimoto’s in February of 2015, but I had been very, very ill since sometime in mid 2014. It’s hard to imagine that I’ve been so sick for that long. What does a “good day” look like for me? It starts with a good night. One of the worst symptoms of any kind of thyroid disorder is insomnia. It is absolutely debilitating. It’s maddening. It’s actually painful after a while. It’s one bad hombre. So, this is a short and sweet blog, and now guess what? I’m going to bed. 🙂

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#HAWMC Day 8: Girls Day Out

I am excited to write today. WeGo Health prompts, “. . . let’s take a mid-week break to fantasize about our ideal day,” and “Who would you spend it with?”

screen-shot-2016-11-09-at-9-50-35-amThat’s easy. So many choices, but one clear winner. My ideal day would be spent with my mom. I miss her. I love her so much.

My ideal day would be pretty simple, really. I imagine spending the whole day with my mother and sister, enjoying the simple pleasures of a Girls Day Out. Of course, in this fantasy, my mom wouldn’t be sick, and neither would I.

Maybe we’d start with a brunch on Canyon Road in Santa Fe, where my mother lives. We’d enjoy parking at the bottom of the road and walking up the hill to one of our favorite brunch spots, enjoying a tall glass of basil lemonade, and sitting at a patio table as we watch tourists and locals ambling past us. My mother loves art, especially Native American art. I love to listen to her, as we stroll through Santa Fe’s many art galleries, and she teaches me about the great artists of the American Southwest, the history of its native cultures, cowboys, Indians, and the Wild Wild West.

Brunch would, no doubt, be filled with lots of laughter. My mom and sister both have great humor, and I imagine lots of “Remember whens . . . .” We love to make up funny rhymes, usually self deprecating in nature, like, “You better recognize, my thighs love fries!” It’s silly. Really silly, but it’s what I miss most. We’d likely find the most quirky, random shop, and a game of “find the most obnoxious white elephant gift” would ensue. The winner gets to choose what my family calls a “Sussy,” a small, but meaningful gift, which my mom would be filled with joy to end up buying for both my sister and me. The game is just an excuse for her to give a gift, for she loves gift giving. I love that about her, love seeing the smile on her face when she knows she’s spoiled us just a little.

screen-shot-2016-11-09-at-9-50-48-amThe three of us would look for gifts for my niece and nephew, too. We’d talk about how they are growing so fast, and what amazing little people they are becoming. By late afternoon, tired from walking, we’d find a quiet spot for a mani-pedi and discuss dinner plans and what glass of wine we’d each enjoy – bottle for the table or glass? The red-vs-white debate would begin in earnest. 🙂 We’d pick a restaurant with a beautiful view of New Mexico’s iconic sunset-evenings in what is truly “The Land of Enchantment.”
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Photo Credit: releveunlimited.com

We’d finish the day, snuggled in a “Mom Sandwich,” the endearing phrase my mom uses to describe being in the middle, one of her babies on either side of her, showering her with hugs and kisses, and snorts and giggles of joy.

Last week I had an interesting conversation with a mesh-injured woman, also a mother, who relayed a recent conversation, in which a family member shared with her this:  “Good health is a crown of jewels that only the sick can see.” I want to be somewhere, anywhere, with my mother. I want to see her wearing a crown of jewels again.

#HAWMC Day 8: The Little Engine That Could

the_little_engine

Today’s #HAWMC prompt is to write a “Little Engine Post.”

Fill in the blank with 10-15 “I think I can . . .” thoughts.

Then write five “I know I can” goals.

 ~

i-think-i-canI think I can get my Hashimoto’s into remission . . . .

I think I can participate in 5k and 10k runs again . . . .

I think I can learn to love cooking gluten-free food as much as I loved cooking biscuits and gravy . . . .

I think I can have more “well days” than “sick days” . . . .

I think I can relearn how to set achievable goals . . . .

I think I can learn to see my illness as a gift that has made me a better person . . . .

I think I can learn to appreciate what my illness has taught me . . . .

I think I can learn to see the wisdom in living life at a more manageable pace . . . .

I think I can learn to live life in the present moment, instead of mourning past losses . . . .

I think I can learn to fully forgive those who can’t or won’t understand . . . .

~

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I know I can learn to live with hopeful anticipation again.

I know I can still be useful in this life.

I know I can find my new normal.

I know I can practice greater self compassion.

I know I can never take my health for granted.

HAWMC Day 5: Weekend Update

WEEKEND UPDATE! With special guests, Blogosauras and SuperDolphin!

(Keep reading, and that will make sense.)

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Sooooo . . . I realized last night that #HAWMC doesn’t stop just because it’s the weekend. No rest for the warrior! So my strategy is going to be to write one post on Sunday using both prompts for Saturday and Sunday. Improvisation – I like it.

Today I’m going to talk about my favorite social media platforms and why I use them, and then it’s SUPERHERO TIME! Yep, what superhero would I like to be or what superpower would I choose to have.

blogosaurasFirst things first. Social media.
It is a hungry monster! #HAWMC asks, “What’s your favorite platform to get your voice heard and why?”

I try to stick to Facebook, Twitter, WordPress (for blogging), and then I have a few lesser-known platforms I LOVE to use. I favor WordPress because of my affinity for writing, but I think Twitter is the most powerful tool for getting any message out to people who need to hear it.

canva_logoOne of my secret, social media weapons is Canva. Canva is an awesome graphic design tool. It has a super simple user interface, and if you can use Facebook, you can use Canva to create great photos and graphics for the purpose of sharing on social media. The best part about the tool is that it offers templates for just about every social media outlet. So, for example, you just choose the “Facebook Post” template, use their library of free stock images, fonts and graphic elements, and create a totally unique picture for your post. Once you create an account, it looks something like this:

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You can store all your previous designs, and the best part is that it’s all FREE! You can choose upgraded images for $1 each, but with a little imagination, you won’t need to.

tweetdeck_logostanfordmedxMy other favorite platform is Twitter’s TweetDeck. It’s kind of like if you were to host a theme party with 100 guests, and each guest brought a laptop, and you all tweeted questions, quotes, facts, jokes, etc. about the theme. It sounds uber-nerdy, but I learned the value of this tool while attending Stanford’s MedX patient engagement conference in 2014 and 2015. During each speaker’s presentation, we all hopped into a conference-wide Twitter Chat, and we were able to ask the speaker questions in real-time and communicate with other conference goers during the interactive discussion. It’s a phenomenal tool for learning and connecting with others. You end up meeting people, simply because you found their comments or questions to be intriguing. The tool is a great icebreaker for meaningful conversation and meeting new, like-minded friends.


SUPERHERO TIME!

#HAWMC prompts us, “If you had a superpower – what would it be? How would you use it?”

screen-shot-2016-11-06-at-12-34-15-pmOk, so I think I’m going to invent a superhero. I can’t choose just one superhero or just one superhero power! I mean, who could? So . . . welcome to my brain. I’ve always wanted to be a dolphin. They are so magical. They are intelligent, playful, social, and WOW! they swim so fast and so gracefully. I’d love to have their super sonic speed and sonar. But . . . then there’s this: FLYING. I want to be a FLYING DOLPHIN. Oh, and I want x-ray vision, and while we’re taking a trip through La-La Land, I want to be able to change colors at will, like that cool species of Octopus. I’d also like to have perfect lie-detecting capability. I can be somewhat gullible, and sadly, I think that may be a permanent trait, one I will carry with me always. I’d use my superpower to bring love, happiness and beauty to anyone who is lonely or in pain, anyone who feels isolated or hopeless. It’s heartening just to imagine, to pretend for a while, that I could take someone in a wheelchair for a joyride, flying around to any corner of the earth. And that lie-detecting power would come in handy in the doctor’s office. As in, “Doctor, what are the risks and complications of said procedure?”

So, here are the best representations I can find of this would-be flying, lie-detecting, color-coordinating, x-ray vision-having, mystical, magical Super Dolphin.

  flying_dolphin

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Ok, so Blogosaurases and Super Dolphin. That is all.

#HAWMC Day 4: Dear Me

Today’s WeGo Health writer’s challenge prompt is:

“Do you remember the day you were diagnosed? Perhaps you were scared, felt alone and surely you had tons of questions. Write a letter to yourself for the day you were diagnosed, knowing all you do now.”

Wow. I’m gonna have to dig deep for this one. I can already feel the sting of honesty.

Dear Aaron;

screen-shot-2016-11-04-at-12-32-58-pmWhat I have to tell you will be hard to hear, harder still to understand. A storm is coming your way, but I have faith that you can weather it. You’ve grown for 40 years, into a mighty tree, but this storm is so strong that it will uproot you and displace you. It will change you. The losses of the last many years will make much more sense, in light of it. The storm is a medical diagnosis. It will be an answer for a lot of questions you’ve had. I wish I could say it will give you all the answers you seek, but it won’t. It’s not that kind of answer. Your diagnosis won’t be the end of your journey. Instead, it will be the beginning of a new journey for you. Don’t worry. It’s not fatal. It won’t kill you in six months or even six years, but still, you’re going to have to fight hard to survive. Old things will pass away, and new things will come. I know it sounds ominous, but there is opportunity for you in this diagnosis. It is a gift you didn’t ask for, but it can give you access to a potential you’ve never had. It has the possibility to end many years of fear, self doubt, and confusion. It offers you the chance to let go of self blame . . . but only if you let it. Don’t hold on to the old things, though you’ll want to do just that. You’re going to have to summon the strength to let go of who you were and embrace who you will become. You will survive your biggest adversary yet.

The storm of Hashimoto’s Thyroiditis is upon you. It will blow and break you. A piece of you will tossle amidst the turbulent winds, and you’ll wake up a seedling, in an unrecognizable desert. Your diagnosis is going to ask you to grow anyway. And grow you will.

screen-shot-2016-11-04-at-8-54-24-amRest for a while when you get to this unfamiliar land. You won’t have healthy soil, and the rains will not come often. The shell that bears your soul will fight against you. Timing will be everything. The sun will be there, but it will be hidden from you for a time. You must stay vigilant. You must learn when to rest and when to grow. You must understand that rest will prepare you to search under the surface. This new terrain is inhospitable and will require you to send your roots out into the dark, into the deep and unfamiliar. You won’t be able to see what lurks in the lightless, but pursue what you need with hopeful anticipation and faith that you will find it. Be unafraid.

You first need to gain your footing. There is no shame in your unsteadiness and vulnerability. During this time, you will feel lost. Your search will be tedious, tiresome, and treacherous. The elements are against you. Do not linger amidst detritus; do not make your home within colonies of ants and worms. They will bite and sting you. At this point in your growth, they are toxic. They will seek to exploit your weakness. Search for signs of life, pockets of water and the trace minerals you’ll need to become strong. You may feel alone and hopeless at times, but remember; you cannot bloom if you do not strengthen your innermost parts, the parts that no one can see except you and the Constant Gardener. Do not be afraid, for your time above the surface will come soon enough. Your destiny is to bloom, but your blooms will only be as healthy as the roots you lay down, beneath this plane. Do not fight to breach the surface during this time, for your roots are still shallow in this secret world. Instead, dig in the dirt. Find strength within your tiny shell. Absorb every good thing you can find. Survey your surroundings for information and any sign of life. Any attempt to bypass the depths will send you back into the storm.

Though you will not yet have the benefit of stability, with ever-growing certainty, you’ll sense your roots are becoming established. You’ll begin to feel perseverant. You’ll know your roots are deeper than ever before, and that the strongest remnant of you hitched a ride on the wise hands of the wind. The formless deep will transform into a tether of riches and security, propelling you towards the surface. You’ll sense you belong to this new landscape, and that beyond this interior, something new and beautiful awaits. You will know when this transformation is underway, because you will feel the pangs of miscalculation and misstep. You may use every ounce of energy to reach for a watering hole, only to find it is a mirage, but this is how you will know you are learning and getting stronger. Next time you will know before you grow. The ants and worms will still be there, and at times, they’ll surely come to bite and sting, but you will discover you have been building a sturdy foundation, an antidote to their offenses.

screen-shot-2016-11-04-at-10-51-22-amAs you breach the surface, the scenery will, again, be unfamiliar. It may surprise you, but here, you will not be alone. You will notice that other seedlings are sprouting, maybe even some that weathered the exact same storm. You will recognize them. You will recognize the sunshine, and both will give you hope. You may even discover there is help waiting for you, someone to bring fertilizer and a watering can. Do not be afraid to accept this help. These are gardeners, and they have been waiting for you to emerge. They know you are still tender and delicate, that you have been through a long and arduous migration. You see, even when you didn’t know what would become of you, they knew. They had faith in you. They are invested in you, simply because you are planted. What kind of seed you are will define what kind of flower you become, but your roots will determine how bright is your bloom, what joy you will bring to others who come across you. You will not be alone in this endeavor, but you, alone, determine whether you bloom.

When you bloom, you will find your station in life is new. You have a different vantage point. You may be situated precariously on a ledge, but remember, you have built strong roots. You are prepared for storms. You have help. You cannot claim ignorance to the storms, for you know now, that they will surely come. Your job now is to overcome, to continue to bloom where you are planted. Your job is to exist as a thing of beauty, to bring joy to those who gaze upon your face, to enjoy the butterflies, the rain and sunshine, and to point the way towards life. Your roots will remind you that withering is not an option, that regeneration is possible. It is now your duty, by your very existence, to proclaim this truth to others. After all, you are living proof that beauty exists, not in spite of the storm, but because of it.

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#HAWMC Day 3: 1000 Dreams

Today our Wego Health #HAWMC prompt is, “Find a quote that inspires you (either positively or negatively) and free write about it for 15 minutes.”

I’m a quote-a-holic. There are so many authors, scientists, humanitarian leaders, business people, members of the clergy, and philosophers who’ve inspired me to believe the impossible can become reality. If you’d asked me this question a year ago, my answer would have been very different. I would have said Deitrich Bonehoeffer, a priest who sacrificed his charmed life to preach the gospel in Nazi Germany; or Johannes Gutenberg, who invented the printing press, and in doing so, influenced every human thereafter who has a message to communicate to others.

My perspective has shifted, and I have come to deeply admire men and women who become chronically ill or suffer a life-altering injury and find a way back to who they are; who have the character to overcome their limitations to achieve a “new normal” and live a life which has meaning and significance to them and to others.

 

“A person who is healthy has a thousand dreams. A person who’s not healthy, has just one. And, it’s to feel better.”   ~ Dr. Izabella Wentz, author

 

 

hashimotos_root_causeIn her book, Hashimoto’s Thyroiditis: Lifestyle Interventions for Finding and Treating the Root Cause, Dr. Wentz, not only has practical suggestions for treating the disease, but she also identifies what happens to all of us when we are stricken with chronic illness. Every day, every morning, my dream is very simple; it’s just “to feel better.”

In losing our health, we lose who we are, who we thought we were, who we thought we’d become, and who we think we can be in the future. I wasn’t prepared for this aspect of being ill. I can deal with the physical pain and discomfort, the relentless doctor’s visits, the never-ending treatments, the bone-weary fatigue; but I have not figured out how to deal with the emotional loss of my dreams, and I have not found my new normal.

I thought I’d be a patient advocate and a writer for the rest of my life. My illness struck in the middle of a tremendous momentum, a force greater than myself that was driving me every day to use my talents to do good. I was happy and fulfilled. I knew I was doing exactly what I was created to do. As my abilities slowly diminished, I began to realize my dreams were slipping from my grasp, and my grasp was loosening, until I could no longer hold onto my dreams at all. I feel stuck now, in a kind of purgatory. Old dreams have fallen away, and try as I might, new ones have not come into focus.

There are a few ways I’ve tried to approach my new reality.

  • Hold on to my former dreams, from an emotional and mental standpoint, and believe I can accomplish them again someday
  • Grieve my dreams; let them die, and wait for new dreams to emerge
  • Focus on feeling better as my new dream, and hope I will find “the answer” or “the treatment/lifestyle” that will change my illness, put it into remission or cure it

None of these approaches has worked yet. Another quote comes to mind,

 

“Hope, perhaps the most dangerous of all emotions and perhaps the most necessary.”  ~ Robert Ludlum, New York Times bestselling author

 

It’s not in my nature to lose all hope, still I am intimately aware of its dangers. I can’t count the number of times I’ve tried to do something I would have done before with vigor, joy, and ease. A 3-mile jog, planning a party for a friend, traveling for work or a vacation, are tasks that would have been virtually effortless simple pleasures, before I got sick. When I try to do these things now, I pay a hefty physical price that can last for days or weeks. That’s when my hope wanes.

My dreams in action: a Christmas party in Dallas, skiing in Colorado, attending a fundraiser deep in the heart of Texas, meeting with mesh-injured women in California, attending a family member’s wedding in Wisconsin, being there to celebrate a court victory for a mesh-injured friend, running in the Sunday-morning rain, meeting with congress members to bring awareness to unsafe medical devices . . . will I ever be able to do these things again? I have a thousand dreams, but my most important dream is to just feel better.

So, to my fellow #HAWMC writers, I want to hear from you. How have you managed the in-between who you were, who you want to be, and who you believe you can become, despite your illness?

 

 

The Writing Process: WeGo Health #HAWMC Day 2

WeGo Health has asked its Health Activist community to discuss the writing/blogging process. How do we go about it?

I love writing, and I always have. More specifically, I love words – so many beautiful combinations, connotation, denotation, word etymology. I guess you could call me the quintessential “Werd Nerd.”

screen-shot-2016-11-02-at-12-48-59-pmMy husband will be the first to tell you that I’m that annoying person who corrects other people’s grammar. I’m not proud of it, trust me, but it’s like having a splinter in my finger or a raspberry seed in my teeth. It drives me crazy until I “fix” it! Ha. Still, I make plenty of mistakes, and I cringe when I reread a post and see them. As far as content, I’ve always got ideas rolling around in my head, blog topics, formats, and current events. I write mostly nonfiction, but I love reading and writing both nonfiction and fiction. I could breakout into writing either at any moment. I’m pretty much always thinking about writing, in one way or another.

Maybe my obsession with writing is best summed up by this coffee cup my husband bought for me . . . .

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I promise, I won’t really do this!

All joking aside, when I started this blog, I knew that so many patients were feeling the same physical symptoms, emotions and frustrations. I was hearing the same sentiments over and over, from patients in California and Washington state, to patients in Texas, Illinois and Maryland. Physical space separates these patients, but words seemed to bring them together as a community, validating their shared experiences and recognizing their shared pain. The blog became a place where those women and men in the mesh-injured community gathered and began to know – not just suspect, but know – that there were others with the same struggles. In that way, I’ve always sought to be a conduit. I try to relate my experiences and those of others in a way I hope will reveal a deeper, more human truth to all. I also wanted to write about my experiences as a family member who was struggling to be a good caregiver to my mother. I wanted families to feel at home here – maybe even to spark conversations that would lead to healing where injury and pain has robbed families of their joy.

I find inspiration all around me. Every person I meet has a story to tell. Every situation has much to explore. I’ve gone through long periods of writing faithfully every day, and that discipline has done wonders for my craft. When an idea comes together in my head, I often jot it down into a notebook or open up a draft as a kind of net, a catch all for random thoughts I hope to connect later. I have notebooks in every room, and my laptop is always handy. When I sit down to write, I usually finish in one sitting or one day. If I’m writing long format or a series, I sometimes create a quick outline so that I have a map of ideas, and to prevent me from straying too far into a black hole of nerdy details that are probably interesting only to me.

As long as I have a cozy space to write – maybe a comfy, corner sofa seat near a window, a cafe with a good cup of coffee and white noise, or a patio with a view, I’m in my happy place and rarely have that most dreaded condition: writer’s block. Here is one of my happy places, where I feel inspired to write for hours. 🙂

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My back patio – a picnic table, a cup of coffee and a view

Editing: now that’s a different story. I had to let go of perfectionism a long time ago. If I hadn’t, I wouldn’t have a blog! I love editing and proofreading, and I’ll keep tweaking a post for hours, if given the time. I actually have a little trick I use. I proofread the post maybe two or three times; then I publish it and proofread it two or three more times after that. I’ve found that only when I know “It’s live!” will I be able to find the tricky typos I often miss before hitting “Publish.”

And every writer needs an assistant . . . or maybe three. Meet Juniper, the Redbone Coonhound; Brooklyn New Yorkie; and Gabby, the German Shepherd-Chow mix. When I’m sick, we often write in what I call “The Packhouse.” It’s a workshop off our garage, which I made into a giant dog house. As you can see, they are really good helpers. 🙂

 

 

Day 1 of WeGo Health’s 2016 Writer’s Challenge! #HAWMC

Welcome to Day 1 of WeGo Health’s 2016 November Health Activist Writer’s Month Challenge #HAWMC! To search or read my #HAWMC blog entries from last year, click here.

To kick-off this year’s challenge, let’s play a game of John Quiñones-style, “What would you do?”

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What would you do if you found out a family member had been seriously and preventably injured by a medical device or procedure that you found out was never tested on humans before coming to market?

What would you do if you attended doctor’s appointments and saw firsthand that your sick and injured family member was being abused and lied to by healthcare professionals?

What would you do if you learned that institutions you trusted, like the FDA, pharmaceutical companies, and even the American courts and justice system were not at all the protective entities you thought them to be?

What would you do if you learned there was something positive you could do to influence a very negative situation?

The answers to these questions (and so many more) are what compelled me to begin writing about my experience in trying my best to help my very ill loved one navigate, what I now know, is a very broken healthcare system that has come to put profits before patients and self-interest before the hippocratic oath, often leaving patients sicker than ever.

Not surprisingly, the answers I found immediately gave way to more questions. From 2011 to 2014, I became laser focused. How could I help my mom? How could we find out what had gone so horribly wrong?

In 2013, I began writing real-time about my family’s experiences as I pursued answers to screen-shot-2016-11-01-at-11-18-01-amthe question, “How could my mother be preventably harmed by what doctors describe as a gold-standard treatment for a common women’s health issue?” The culprit is called transvaginal mesh. It’s a medical device made of polypropylene plastic, implanted most often via a patented medical procedure using the da Vinci® Surgical System. The procedure is an outpatient surgery and usually takes under an hour to perform. The device and accompanying procedure were aggressively marketed to doctors and patients by medical device manufacturers as a simple, minimally-invasive procedure to treat stress urinary incontinence (SUI) and/or pelvic organ prolapse (POP) in women. A similar medical device is also used to repair hernias in men and women.

Click here to listen to a radio interview I did in 2013 that describes the suffering caused by the ill-fated transvaginal mesh device and procedure.

After roughly three-years of nonstop learning, being a caregiver for my injured mother, advocating for her and others, I had become a bonafide patient advocate. I was hungry to learn as much as I could, as fast as possible. I longed to comfort others who were experiencing the same devastation in their bodies, in their lives, in their families. And then . . . in an ironic twist, me – the patient advocate, became me – the patient.

bamYep, in mid 2014, I started to experience brief episodes of intense fatigue. I would be carrying on with my work and writing, and then BAM! I would get knocked down, seemingly out of the blue. An all-consuming fatigue would come over my whole body and would render me completely unable to move. As quickly as these episodes came on, they seemed to recede. I would rest for a few days, and the feeling would mostly subside, and I’d go back to my very stressful and busy life. The only other symptom I had was extremely low blood sugar. No matter what I ate, I couldn’t get the glucose monitor to register more than 50 – 70, not a good number. In the summer of 2014, during a conference in Berkeley, CA, I had the most severe episode yet. I had to leave the conference and fly home. I was devastated. The next many months were filled with doctor’s visits, and one scary trip to the ER, when my blood sugar plunged so low that I began to lose consciousness. I was told all my bloodwork was “normal.” I wasn’t overweight. I couldn’t describe any other symptom besides fatigue and low blood sugar. I was under a tremendous amount of stress, so I just thought I needed to slow down, take time for myself. The episodes became more frequent, and in a matter of months, I was bedridden. Doctors didn’t seem to have any answers. I became so sick that my husband took a leave of absence from his job, and we focused on getting answers.

screen-shot-2016-11-01-at-11-52-00-amIt wasn’t until February of 2015 that I was diagnosed with the autoimmune disease, Hashimoto’s Thyroiditis.  Here is an excerpt from the blog I wrote after diagnosis:

“The only way I could describe the level of fatigue was to say, ‘Every single cell in my body aches and is tired, from my eyelids to the muscles in my upper arms, to my legs to my toenails. I feel like I have tiny little anvils hanging from every single cell.’ If I could find a doctor who would even listen, ‘tiny little anvils’ doesn’t have a diagnosis or billing code. I was visiting endocrinologist after endocrinologist who DID NOT LISTEN and sent me to have blood work done for diabetes. I didn’t have high sugar, I had dangerously LOW blood sugar, consistent and chronic hypoglycemia. To see a three-digit number on a glucometer was a RARE occurrence for me. Lack of blood sugar regulation was the only clue I had at this point, and hypoglycemia itself runs in my family. As expected, all testing for diabetes came back saying I not only did not have diabetes, but I had a DECREASED likelihood for diabetes. I would ask them to check my thyroid and do a full thyroid panel and they would just tell me, “I already checked your TSH. You are fine.” They would not honor my requests to do a full thyroid panel. They simply would not do it. Month after month, my health declined and doctors would not listen to my symptoms or me. When I began to have lab results that I could present and take with me to the next doctor, hoping he/she would listen, my hope renewed. But it was a fleeting hope, because I heard everything from “the labs are wrong” (WHAT?!) to, “Let’s check you again for diabetes because in rare cases, pre-diabetics can by hypoglycemic.” (WHAT AGAIN?!) Why are we looking for rare causes at the beginning of the diagnostic process?

Mesh news Desk 185 wideI felt like I was on the same merry-go-round of horror that I described when I wrote this article for Mesh News Desk in 2013 about seeking out help with all of the health problems my mother was suffering, which we now know are caused by the mesh implant.”

So I was left with only one question:  NOW WHAT?!

I thought thyroid-replacement therapy would be the silver bullet and that, quickly, I’d be back to my busy life. I could not have been more wrong. Handfuls of vitamin supplements, going completely gluten-free, and lots of rest, and two years later, and I’m still struggling to reclaim my health. The process has been painfully slow, much slower than I had hoped.

screen-shot-2016-11-01-at-11-54-21-amSo now why do I write? Why do I share my health condition so publically? The answer is simple. Because this is where I am. This is who I am. Often times, we troll Facebook, and looking at the smiling faces of all our friends, we assume every person’s life is perfect . . . except ours. That’s a myth. Everyone struggles with something. Hashimoto’s is my struggle. In my desire to know the truth about the mesh that so profoundly injured my mother and my family, I learned a valuable lesson about myself. As a health activist, adherence to the truth in whatever form it comes is paramount. This is my truth, and it hit me square between the eyes.

 

“Writing is a Struggle against Silence.”

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A quote by highly-esteemed author, writer, novelist, Carlos Fuentes.

 

A “MUST READ” for Patients with Chronic Illness/Injury

Hello Warriors;

Over the course of nearly three years of writing this blog, I’ve written mostly about transvaginal mesh and hernia mesh implant.

Screen Shot 2016-05-06 at 7.18.52 AMAs I have become more embedded in the national community of patient advocates, through the National Center for Health Research’s USA Patient Network and other entities, I’ve also spoken about general health and wellness issues, including my own struggle with Hashimoto’s Thyroiditis.

Screen Shot 2016-05-06 at 6.39.43 AMMy struggle with this chronic auto-immune disorder has made me a more compassionate patient advocate, and a more educated patient. It’s also put me in the unfortunate category, sometimes referred to by doctors as, “the difficult patient,” a term mesh warriors know all too well.


 

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Dana Trentini, Hypothyroid Mom

 

I recently read a post, written by Dr. Cynthia Li over at Hypothyroid Mom’s blog/Facebook page.

Dr. Li was diagnosed with postpartum thyroiditis, an autoimmune condition similar to Hashimoto’s. So much of her post resonated with me. Two particular quotes struck me:

 

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Dr. Cynthia Li

“A researcher first explained a line of averages to me during a college internship. I worked in a microbiology lab investigating the effects of hyperbaric oxygen on certain bacteria. When I plotted the results, my data points fell into a rainbow arc on the page. A few dots landed in isolated corners. “What do they mean?” I asked. “Nothing important,” he said. “There are always some that don’t fit in. We focus on the rest.”

Doctors do the same with these stray dots. Toss them out.

I didn’t fit any criteria for disease. Doctors (I) sometimes refer to such patients (me) as ‘difficult patients.’”

She notes her endocrinologist told her, “Let’s see,” while tapping his fingers on the keyboard, “Your numbers are within the reference range.” Too many patients, even doctors who are patients, have experienced this type of arrogant dismissal. I know I have.

Dr. Li continues,

“At a follow-up appointment, a younger endocrinologist at the same university hospital covered for my regular doctor. After reviewing my case, he asked, “Why’d your doctor order the radioactive scan?” It was unnecessary, he said.

Surveys show doctors often recommend treatments they wouldn’t choose for themselves if faced with the same circumstances. Doctors base their recommendations on survival outcomes and disease end-points. (Data.) Patients base their choices on survival as well as quality of life, risks, and experiences of friends and family. (Real life.)”

Her passionately-truthful article is one every patient with a chronic illness or injury would benefit from, by reading.

I encourage you to follow Dr. Li’s progress on her Facebook Page, as she documents her journey in a forthcoming memoir about her struggle with thyroid disease, and the long road to regaining her quality of life.

My thyroid life and I thank you, Dr. Li, for giving us a peek behind the veil of the doctor-patient relationship, both from the patient and doctor’s perspective.

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