Dear Thyroid^TM

(Written by Sharen, Thyroid Patient)

Dear Thyroid,

Happy New Year. You and I have finally WON! Well, let’s say we’ve won the first step, and that is finally getting the insurance company to open their eyes. Not sure if it was my patient call, or the medical bills or the doctor’s office finally calling to let them know that the generics are not accepted in my body. Anyway, I received a call today to let me know that they are letting me take the correct medication for one year.

Dear Thyroid,

Well, two days have passed so I called the pharmacy, and—yep!—they are saying that the insurance company will not process the medication. So I called the insurance company back, and they are stating that the pharmacy did not call them. So, they will call the pharmacy back, then me.

Dear Thyroid,

Another day has passed and so far not a call from anyone. The pharmacy states that the insurance company didn’t call, so I will call the insurance company. Called the insurance company and the lady suggested that I stay on line while she talks with the pharmacy. She called them, then she talked with me, stating that the pharmacy was lying and that the medication will go through at a certain dosage only per pill.

Dear Thyroid,

Well, another day has gone by and I am still fighting with the pharmacy and now the doctor’s office. How hard is it to understand that the pill can only be 25, not 50! Finally, after 4 HOURS, I’m able to pick up the right dosage and the insurance company is paying.

Dear Thyroid!

Oh Good Grief! I stopped at the pharmacy and they have not even started to work on the prescription. Then they state they do not have the full amount, that I will have to come back sometime next week. They also stated that none of this was their fault.

Dear Thyroid,

I am back on the right medication, and I am feeling better. The thyfog is less and the thyblindness has eased as well. The thought of seeing the doctor in March is not high on my list. I have kept record of all the running around that has been done due to her people and herself and I feel she needs to know that this is not the way people should be taken care of.

But I won, ONE battle, and maybe because of this victory, others will be able to fight and win as well.

So, OK Thyroid! Wakee….Wakeee….

Sharen

–

Follow Dear Thyroid on Twitter, Facebook and Group, Fan

Thank you in advance for your incredible patience, we appreciate it, and YOU.

We have over 2,000 bands to send out, as mentioned, which we are sending in 500 increments per week. To be sure everyone gets their bracelets, kindly give us until April. If you haven’t received your bracelet by mid April, please contact Katie and let her know.

As of February 1st, we began accepting SASE’s (Self Addressed Stamped Envelopes), for bracelets, which are still 100% free. We encourage you to continue sending in your SASE’s. We are receiving them and sending awareness bands.

Please send your SASE’s to:

Law Offices of Link K. Schwartz

Attn: Katie Schwartz

1925 Century Park East, Suite 2300

Los Angeles, CA 90067

VERY IMPORTANT: If you are receiving mail in the United States, be sure that your SASE’S have 2/61 cent stamps

If you’ve received your bracelet, please let us know! In fact, if you’d like to send a pic, too, well that would be just dandy.

Thank you for spreading awareness! Keep those SASE’s coming.

Love,

Dear Thyroid

–

Follow Dear Thyroid on Twitter, Facebook and Group, Fan

I’ve had health insurance of one kind or another my whole life.  I’m fortunate for that, and I know it.  But it wasn’t until my diagnosis with Hashimoto’s disease last June that I actually paid attention to my health plan.  The good news is that not only am I paying attention now, but that it appears that my family’s latest health plan is a good one (I think…).

It’s not that I’ve never used coverage before–I am no stranger to doctors and hospitals.  But in the past, my care largely fell into two categories: routine yearly health check-ups, and catastrophic/accident care.  Yearly routine care was pretty much my annual gynecologist appointment, which usually went without incident.  But, being an active individual who has been involved in relatively high risk activities for most of my life, I’ve had my share of, ahem, unforeseen health issues.  There was the tibia fracture in 1993 slam dancing in the mosh pit at a Stuck Mojo concert.  And then the freak-accident fall with my horse while just walking back to the barn (after successfully schooling some hairy cross country elements) that resulted in a concussion in 2002.  The lacerated thumb ligament from a horse kick aimed at my face in 2004 occurred almost a year to the day after a young horse actually did land a kick right between my eyebrows–although both those incidents were covered by Worker’s Compensation.  I wish I could say this was the extent of it, but, unfortunately whether due to known, calculable risks, or plain and simple bad luck and balance (hello, fractured metacarpal 5 from falling off my Dansko clog), I have had plenty of cause to actually USE my health insurance benefits more than I would have liked.

The Hashimoto’s deal is different, of course, and something to which I know you can all relate.  I’ve now entered the realm of chronic disease.  For most of us, once we have a diagnosis with an auto-immune disease, endure a thyroidectomy for cancer, or take that radioactive pill, we gain admission to a world where we, and our current and future insurance companies, know that we are gonna rack up some medical bills for the rest of our (hopefully long) lives.

While I was working at getting my diagnosis (which, like many here, took some time), I was too concerned with my health to research my health insurance.  My husband (who actually has the policy) didn’t really know anything about it either.  Up to this point in our lives, our health insurance knowledge consisted of “fill out these forms” with an HR person, which resulted in some sort of card to stick in our wallets.  Over the years, through various employers, we’ve had Cigna, Tri-Care, Great West, and now a Blue Cross/Blue Shield (BCBS) plan–and to be honest I have not noticed any difference.  When your employer has a deal with an insurance company, your options are take it or leave it–while individual health plans (ie, not employer-sponsored plans) may offer you more choice, it usually comes at significant cost.

So, empowered with the determination to really understand and get the most out of my health plan, I started with the most basic step–I visited their website.  As predicted, this was not going to be easy.  The website is huge–deeply layered with all kinds of information, of which I have barely scratched the surface.  Once logged in, I could easily access my claim history information.  In the last 10 months, my doctor visits and testing have cost just over $10,000, of which BCBS paid an “allowed benefit” (the agreed amount for an in-network provider) of just under $5,000.  For this coverage, my co-pay was $200.00.  OK, whatever.  I want the REAL GOODS.  What have you done for me lately?

Again, it’s not an easy website to navigate, but so far I have found some areas that I will be checking into deeper (and reporting back anything of note):

• They have a section with online tools and services, such as finding new doctors, estimated costs, and different forms and contact numbers.  Eh, mildly interesting.
• OOOHHH! A section of discount options for “alternative therapies” and fitness centers.  A quick look reveals that with my insurance card I can get a 20% discount on acupuncture, pilates, somatoemotional release (I don’t even know what that means), nutritional counseling and dozens of other programs.  Wow, who knew?  Not me!
• Another section has an exhaustive “Wellness” area.  On a brief tour it is less than impressive: weight management has food diaries, exercise logs, fast food restaurant nutrition data (as if?), healthy weight calculators, etc.  The nutrition portion is just as bad.  Looking at the children’s nutrition section, one of the many articles has 5 fresh lunch ideas for kids.  One of these is called a “Bacon Cruncher”.  Your honor, I rest my case.

Admittedly, I have not delved too deeply into the website’s resources.  I would assume, however, that I am not the only person who does not have hours to waste spare, either.  Regardless, I would give the additional “wellness” resources a C⁺.  The information is hard to find, not necessarily helpful, and in some cases, not necessarily correct.  But, it is there–a health insurance company’s attempt to prevent disease through healthy living?  Call me a skeptic, but for now I think it may just be lip service.

Check it out yourself, let me know what you think:  www.carefirst.com.

Find out more about Robyn.

–

Follow Dear Thyroid on Twitter, Facebook and Group, Fan

Written by Joanna Isbill: Editor, Life Redefined (Thyroid Cancer in Young Adults Columnist)

It was Wednesday, October 8, 2008. Just a few days after my 24^th birthday. I woke up with an ache in my neck. I reached up and felt a large knot on my thyroid. Something inside me told me it was cancer.

The next day, I saw my primary care physician. He ordered blood work, sent me to have an ultrasound, and referred me to an endocrinologist. The ultrasound showed three nodules on my thyroid—one on the left and two on the right. The blood work indicated Hashimoto’s thyroiditis. I met with the endocrinologist. He told me that the chance of this being cancer was very small. However, he still recommended I have a biopsy to confirm what the blood work suggested. Another endocrinologist in the practice performed the biopsy. It was less than pleasant. Afterward, I heard him talking to my endocrinologist about the appearance of the nodules. They were talking in hushed tones about calcifications. I later learned that calcifications are commonly seen when cancer is present.

On October 21 I got a phone call from a medical assistant at my endocrinologist’s office. She told me I needed to come in the next day to get the results of my biopsy. Who calls and asks you to come in to tell you everything is benign and you’re in better health than ever?  After this phone call I broke down and cried for a long time. Even though I had known in my gut all along I had cancer, that phone call still hit like a brick. I will never forget the emotions that coursed through me that day.

The next day, my endocrinologist confirmed what I already knew. The biopsy indicated papillary thyroid cancer. I had a total thyroidectomy and central node dissection on November 5, 2008 followed by RAI a few weeks later.

I’ve been through several different frames of mind since I was diagnosed with cancer (which I’ll discuss in further detail in future installments). Relief. Denial? Fear. Acceptance. The day I was actually diagnosed with cancer I felt relief. I was relieved because, although I knew in my gut I had cancer, the actual diagnosis confirmed my instincts. During the two or so months after my surgery, I think I was in shock. I don’t know if it was denial or not, but I do know that I had not yet absorbed the fact that cancer was no longer something that happens to other people, but something that happened to me. Once I absorbed this, the fear set in. The fear that cancer brings is crippling. It is absolutely all-consuming. After I got over the fear, and I did eventually work past it, I was left with acceptance. I accept that I have cancer, and I accept that it’s something that has changed my life.

Throughout the weeks and months after getting my biopsy results I was bombarded with emails and cards full of encouraging messages. Many of my friends who sent these messages told me they hoped I could soon put this all behind me. If only. Cancer is not something that I can put behind me. I carry it with me every single day. It has changed every single part of my life. As much as I fought the change, it happened. I am a different person. And so it will never be “over.”

Cancer left my life in pieces. But when I tried to put them back together, I realized they no longer fit the same way they once had. It’s a work in progress, but I am trying to figure out where everything goes, redefining my life.

I’m looking forward to walking this road with you, because it’s not a road that should be walked alone.

xoxo,

Joanna

joanna@dearthyroid.org

Read Joanna’s Bio.

–

Follow Dear Thyroid on Twitter, Facebook and Group, Fan