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Guest Post: Diabetes For Christmas.

I wanted to share this guest post on this precise day because exactly five years ago, Lindsay joined the diabetes community as a person with type 1 diabetes.  She's sharing her diagnosis story today, and marking five years as a diabetes badass.  (Also, she's married to a "shit hot sailor" [her words], and I think that's awesome.  Lindsay and I met a few months ago in San Diego, and she's an incredibly smart and passionate part of the diabetes community.  I'm proud to host her words today!

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December 23, 2006

Lindsay ... whoops, I mean "Linds."  :)After moving to Puerto Rico with the Navy in September 2006, December came, and it was time for my favorite yearly doctor appointment (joy). The gynecologist insisted that I have complete blood work just to make sure everything was okay (how did he know?). I went to Clinica Las Americas Guaynabo for my appointment. One week later I received a phone call from the lab that my results came back abnormal and I should try to get to my PCM as soon as possible. They refused to send the results to my doctor (down the hall); I had to physically pick them up and hand deliver them to her, when I could get in.

I went the same day to pick up my results, and sat in the car looking at them. Right away, I noticed the low and high markers that were out of clinical range. The glucose was 399 mg/dL, with a clinical range of 70-110, and the glucose in my urine registered 4+.

I went home, called my best friend Michelle, a nurse, and told her. She hesitated and said “Linds, you need to go to the doctor right away, that’s really high, and might mean that you have diabetes.” I was able to get an appointment on December 22nd to see my PCM, who said, “You might have type 1 diabetes, I’m going to send you over to the lab to redo the blood work and we’ll see what it says."  She put a rush on it. The result was 256 mg/dL, not quite 399 mg/dL (go pancreas go!), but still too high, so she said, “You have to go to the hospital and get insulin, we can’t help you here."

I thought, “Insulin? Puerto Rican hospital?”  Uh oh.

I was referred to Ashford Presbyterian Community Hospital in San Juan. I went home from the clinic and called Seth, and said, “We’re supposed to go to the hospital, because the clinic can’t handle my case, and this is the only hospital that will accept our insurance.” At this point, the importance of this trip was greatly misunderstood, and Seth happened to be getting off work early that day so his command could have their holiday celebration. I decided to go with, have lunch, and then we were going to go to the hospital (which I laugh about now). After the celebration, we left for the hospital with printed directions in hand, and whoa, with traffic, it took us quite a while to get there. When I saw the hospital, and after we finally found parking in this cramped and congested touristy area, I grew uncomfortable. We went to the ER, filled out insurance paperwork, gave them my PCM referral, and they brought me right back. Upon initial check in, they tested my blood glucose and it was 389 mg/dL, he said, “we’re going to have to admit you and get your blood glucose down into a safe range.”

There were no open beds in the ER, so they put me in the very back corner on a gurney, next to another patient’s day old food tray. It was dark and scary. I got up to go to the bathroom, and the bathroom floor was covered in urine, the soap dispenser was broken, there were no towels. I came out of the bathroom and there sat 10 or so staff members sitting at the desk with their feet up, chatting.

I was immediately hooked up to saline, and they came to inject insulin into my arm…right into my muscle (no subcutaneous injections here!). Every hour they would come and draw blood from my bony small wrists (no IV, just repeated digging around in veins in my wrist), and check my blood sugar. It was starting to drop. Two technicians came by to perform an EKG to check my heart, but they couldn’t figure out how to work the machine. They kept laughing and saying “You have to be smarter than the EKG machine.” At one point, the ER doctor came by and I asked, "Do I have type 1 diabetes?” She nodded, said "Yes," and then just walked away. At this point, neither Seth nor I really understood what was going on, nobody explained anything to us, and were both so overwhelmed that we sat and cried together. I told Seth I was scared, he told me that he would take care of me and protect me (which he has done 1,000,000%). 

When my glucose was in a safer range, the doctor gave me a prescription for insulin, and referral to an internist whom I could call on Monday (this was Friday) and make an appointment with. I asked where the pharmacy was, she said the hospital pharmacy was closed but there was a Walgreen’s up the street. After eight hours in the ER, I signed the discharge papers, and off we went at 12:00 am.

Trying to find Walgreen’s in the middle of a very popular tourist area, on a Friday night was interesting and apparently this is peak time for filling prescriptions. It took a while, so we walked around, waited, and I called my mom to update her, and then they finally called our name. After that entire wait, the pharmacist couldn’t get our insurance to go through, so the bill was a couple hundred dollars.

Again, completely misunderstanding the severity of this situation, we said, "Forget it; we’ll go to our primary care clinic in the morning which has a pharmacy and get it there." We did purchase a glucose meter to test blood sugar (this was never explained to us), although neither of us knew what any of the numbers meant or when we should actually use it. On the way home from this overwhelming day, we got stuck in rush hour traffic at 1:00 am in the morning, which gave me a good opportunity to call my best friend Michelle again. I told her everything, and asked, “How do I give myself an injection?” She was totally flabbergasted that nobody took the time to show me how to give myself a subcutaneous injection.  She was crying, telling me that she wished she was there with me, and to call anytime day or night.

Once we got home, we tried to decompress by playing with our new golden retriever puppy Lucy, who’d been alone that day, more than she’d ever been in her short life. The next morning, we woke bright and early and went to the primary care clinic, prescription in hand. The pharmacist filled the prescription, and we talked with her briefly about how we received no information or instruction on type 1 diabetes at the hospital, so she told us to hang on while she quickly ran next door to the clinic and got me in to see another PCM who could help me.

Her name was Dr. Roselyn Martinez-Olivieri, and I will never forget her. She gave Seth and I the most important (you know, life-saving) information, when to test blood sugar, how to inject insulin, and started me on an insulin regimen. This was December 23rd, and the clinic closed early that day, at 3:00 p.m. for the Christmas holiday, so she gave me her cell phone number (mind you it was a “movie star” cell phone which rarely worked where she lived in the jungle in PR), and for the next three days, I called her regularly with updates, numbers, etc, and she told me how to proceed. Seth and I had finally received some decent information, and had, so we headed home, to try and enjoy our first Christmas in Puerto Rico, with a new disease (Merry effing Christmas!).

Several hours later, we went to get some insulin to inject (thanks to Seth for giving me my first injections, I couldn’t do it myself), and much to our surprise (although no surprise now), the pharmacist had given us insulin two years past the expiration date.  [Editor's note:  !!!]  Again, Seth and I set out to find some insulin for the third time, and eventually found an ER (the 3rd hospital we went to) doctor that wrote me a new script and we proceeded to the hospital pharmacy. They wouldn’t fill it because I’d already had one vial filled that same day (and so begins the insurance shenanigans that accompany type 1 diabetes) ... so we fought with insurance to explain the necessity, and that it wasn’t our fault the second pharmacy gave me two year expired insulin and is closed for the holidays ... and on and on. Finally, insurance gave in and filled the prescription.  

So we headed home with fresh, unexpired insulin to start our new life together. A life that in most ways, replaced the life I had been living for 25 years up until that point.  Looking back now, you could say that this really was the worst Pap smear ever; I went in for one test, and I came out with type 1 diabetes!

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Lindsay's bio (in her own words, because I'm not changing a write-up that made me smile this much):  My name is Lindsay, but please call me Linds.  Born and raised in West Des Moines, Iowa and I miss it terribly.  Very happily married for almost 9 years to a shit hot sailor and we’re currently living in San Diego, CA with our Golden Retriever Lucy and Kitten Izzy.  I’m 30 years old.  Diagnosed with type 1 diabetes at age 25.  Started TOAST (Type One Adult Support Tidewater) at the Tidewater Chapter of JDRF.  Currently, the finance chair for DiaBuddies, a one on one mentor/mentee program here in San Diego.  I’m also a mentor with the program.  I’m the Volunteer Outreach Chair for the San Diego Chapter of JDRF, and an active volunteer.  Have walked in every single JDRF walk since diagnosis and raised over $16,000.  Currently employed as a Financial Analyst at Dexcom.  This year I was one of three corporate JDRF Walk chairs at Dexcom and helped raise over $41,000 dollars for the walk this year.  

I have a lot of hope, and really believe I was meant to have type 1 diabetes (after all, I was named after the Bionic Woman).

HAPPY DIAVERSARY, LINDS!!!

Comments

Thanks for sharing. I was in the Air Force and got diagonsed in Italy by a doctor speaking Italian. My thought my treatment was bad, until I read about yours. Keep fighting I have been type1 for 14 years.

Diagnosed at all must have been crazy but in Puerto Rico sounds so different from here in teh states!! You are lucky you were able to get some insulin that wasn't spoiled, OMG!! Happy diabetes anniversary "LInds"!!!!

What a story! This makes me want to go to PR and teach teach teach! (sometimes I totally think I was meant to have T1... I absolutely know what you mean by that :) )
Thanks for sharing!!

Happy Diaversary! I laughed about the going to lunch...because it reminded me of my story. I was on my way to a party after getting blood work done earlier that day and the doc said "your blood sugar was over 600, you need to go to the hospital now." I thought...hospitals take a long time, I better eat first. I was 800+ by the time I got there. DOH! This was an American hospital and I was also given NO information after they brought me into range and sent me home and I was back the next day at close to 500. Crazy, crazy...

Reading your story again makes me cringe. A good friend's daughter was diagnosed 2 years ago in Spain and it was a similar nightmare. Linds, you are such an inspiration to so many people and I love how REAL you are about your disease. We WILL meet in person someday! LOL!

Happy Diaversary. You are a diabetes sibling of my son who was diagnosed 5 years ago today also! Our story isn't quite as exciting as yours, but still probably the scariest day of our lives. Best of luck to you- you and my son both rock!!!

You are a rockstar!! This is like Survivor:Diabetes and you won...now where's your million bucks?! (Silly me, it all went to co-pays and pump supplies!)

Wow, Linds. What a story, and so many blessings there--as in, you did not die do to the many lacks in your diagnosis, you know, what diabetes is and how to treat it and how to get non-expired insulin! Scary stuff.

On a totally different note--yay West Des Moines! I'm a former Urbandale girl. But Valley West Mall beat Merle Hay by miles. It was the fountains. ;-)

Neen,
I didnt think I could be any prouder of you. Once again, you have shown me I am wrong.
You rule diabetes!!!
As for that hot shit sailor of yours.....ya know I am keeping my eye on him!
Love Dad.

Linds, first "happy diaversary". I'm SO glad we met online shortly after your diagnosis. I'll never forget you and my son share a diaversary (his is 8 years today), and that I was able to help you a little bit via online, since I was so flabergasted that you got no instruction there in PR! One day we will meet, since we are both Iowans! Thanks for your online friendship all these years!!

Linds: I remember when you called me to me you had been diagnosed with Type 1 Diabetes. I didn't know much about it but I knew that you would be okay. You have REALLY surpasses "okay". You are better than "okay". I also remember telling you at some point "you got Type 1 for a reason, you may find out what that reason was, or you might not." I believe the reason is so you can help others who struggle with the day today issues that diabetes can cause. You are an inspiration to so many people and I could not be prouder of you. I love you so much.

Thanks for sharing your story, Lindsey. I was 24 when I was diagnosed, and celebrated my 25th "diaversary" on Nov. 22. I'm doing well.... These "anniversaries" are really important to us...in a wierd kind of way :) It's great to be able to celebrate the victory each year. Glad you have a husband who is a real partner. My wife is definitely that for me. Take care!

Hi Lindsey!
I was born at the Ashford "Presby" hospital "some time ago". My daughter Gracie was diagnosed in Indiana four years ago. We're all packed to go visit family in San Juan on the 25th. And by that I mean "PACKED." You actually can find good pharmacies and un-expired insulin, but the lines and the traffic are still a nightmare. Thank goodness for Walgreens. Some day I'll be brave enough and take Gracie to Vieques again... And why do plantains have so many carbs?! I'm also a JDRF volunteer outreach chair. So many coinkidinks!
I don't want to say happy diaversary, i wish no one had to "celebrate" them ever again. But I hope you had a great day!

Lindsay..love your moms comment. Maybe because I'm a mom of a T1 little girl....take that back...strongest, bravest girl I know...just like you. You are a rockstar!

Terrifying, horrifying, and yet you made me smile. Thanks for sharing your story. And thanks for all the D-work you do. Happy Holidays!

OMG Linds, I knew it was bad when you were diagnosed, but had no idea just how bad it was, I'm so sorry. I wish you would have called me. You are such an amazing, strong young woman, & we couldn't be more proud to have you as our niece. You are kicking some diabetes ass for sure, you go girl! Love you so much!
Aunt Linda

Linds, I am heading to Des Moines area tomorrow with my type 1 10 year old daughter to visit grandma and grandpa for a late Christmas. She was diagnosed when we came home to Colorado after Christmas in Iowa three years ago. Her diaversary is Jan. 5th. This year's excitement will be traveling with her new omnipod which she has been on for 4 days. Never a dull moment. Hope your holidays are happy and your numbers rock in the new year. We'll think of you when we're in IA!

Oh Linds, how I remember this story!! It is so scary how things slip through the cracks. Things, in this case, being life necessary skills!! Love you dear.

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