I’ve been cleaning and organizing recently, and I’ve come across all of my paperwork and lab work from when I was diagnosed with type 1 diabetes (it makes me laugh at how comical the healthcare was, although at the time, I did not think it was funny). I’ve also been reflecting back on what I went through at that time, and how I got to where I am today. Some have read this, but for those that have not, here is my story.
December 23, 2006
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, 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, not quite 399 (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 AshfordPresbyterianCommunityHospital 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, 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 and said yes, and then 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 her “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 with 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 “moviestar” 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. 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 T1D)…so we fought with insurance to explain the necessity, and it wasn’t our fault the second pharmacy gave me two year expired insulin and is closed for the holidays. Finally, insurance gave in and filled the prescription.
We headed home with fresh 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, and a life that Seth and I had been living together for four years. 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 T1D!
I know this story from you Linds and every time I hear it I get angry, sad and relieved that you were okay after all the bullshit and lack of care. You have come a long way baby!!! love ya Linds
Love you, Bern!!
Oh my gosh, I had no idea–what a miracle you are!! Thank you for sharing your (horror) story!
Not sure about that, but thanks Barb! 🙂
Great Blog – Linds just a question – did you have any illness in the months/weeks before you were diagnosed?
Hi Jeanette, thank you!! Surprisingly, I had not been sick for 3 1/2 years leading up to my diagnosis!