Moments of Wonderful

…rather than a lifetime of nothing special. A diabetes blog.

Moments of Wonderful - …rather than a lifetime of nothing special. A diabetes blog.

Diagnosis Story

Part 1 – The First Diagnosis

In April of 2002, my lower back starting hurting pretty badly. I thought I had pulled a muscle or something. After a few days of pain, I finally went to the urgent care doctor. When he noticed where my back pain really was, he had me do a urine test and tested my blood sugar. The doctor told me that I had a kidney infection and that normal people don’t get those out of the blue so there had to be a reason. He said my blood sugar was 208 and called my mom in – I was just barely 21 and she was in the waiting room.

The doctor then told us that I was diabetic. He gave me some Glucophage. He said I needed to make a follow-up appointment with my regular doctor to see if I had any complications.

I have to admit, I wasn’t really that scared or upset. Mostly because I had no idea what was going on. I don’t know how upset my mom was either because I ended up driving back up to my college that night. My living area was having a little get together so I stopped by. They knew I was going to the doctor so I told them what he had said.

Would you believe that there was a pumper in the room? When I think back over my story I am amazed at how much God is in the details. Even when I didn’t realize it then, He was really looking out for me. She heard what the doctor had said and was very confused. She told me something didn’t seem right and I should see another doctor as soon as possible. She also gave me some advice on foods and such.

Over the next few days, I continued to take the Glucophage. I had several (what I realize now were) low blood sugars. Finally I had my appointment with my primary care physician. He was upset that the urgent care doctor had put me on pills, and immediately took me off of them. He said we can control what was going on with diet and exercise and gave me a meter to test with. He said if I ever got really sick or pregnant to come back in right away. That was it. So on my way I went with no goals and no idea what I was doing.

Looking back now, I have no idea why I did not immediately hop on the internet or do something to figure out what was really going on or to get more information than what the doctors were saying. That would never happen now – that’s for sure!

*******
Part 2 – Headed for DKA.


When we last left off, I had been diagnosed and given a meter but I had absolutely no clue what I was doing. And actually, I was fine. I was experiencing what we like to call a ‘honeymoon period’. Adding the short time on Glucophage to that mix, and my pancreas was shocked totally back in action. I would test my blood sugar occasionally but mostly I was just going on with my life like normal.

The next academic year, my senior year in college, I was taking 17 credits and working 4 part-time jobs. I was pretty busy and didn’t spend too much time on myself.

Starting in about October or November, people started asking me if I was feeling alright – if I was eating. I had no idea what the big deal was – I was actually eating more than I ever had. And I was thirsty – really thirsty. That Christmas, we went to visit extended family in New York and they also were concerned about how I looked. When I go back and look at pictures now, I can’t believe that I didn’t notice anything was wrong.

the two diabetics

My grandma and me that Christmas – the two diabetics in the family!

When I got back to campus after Christmas, the concerned questions got more and more frequent. It was really annoying because as I ate more and more, more and more people were asking me if I was anorexic. I could not figure out what was going on.

I noticed that my clothes were not fitting so well anymore. My size 4 jeans had to be held up with a belt on the smallest setting.

look at those bird legs!

I was waking up every night with leg cramps and to use the bathroom.

The most disturbing part to me was that I could only wear one pair of shoes that I owned because they were very light and they laced up. Anything other than that felt too heavy for my legs to carry to class. No matter what, the walk to class almost left me in tears of exhaustion.

And I was moody – boy was I moody! I actually ended up having to switch roommates and living areas because I could not control my emotions and deal with a simple situation like an adult!

Since I had been told I should be controlling this with diet and exercise, I was working out like crazy and religiously logging fasting numbers no lower than 200 and daytime numbers between 400 and 600. By mid-February, I finally hit a crisis point.

look at my wrist!

My wrist and the bagginess of the size XS shirt I am wearing really scare me in this picture.

*******
Part 3 – The Post-It Note and the ER Visit


On February 3, 2003 (10 days before my 22nd birthday), I was at a friend’s house with one of my other friends. She had just broken up with her boyfriend and was not doing well so we went there to support her. I felt really weird that night. I could not catch my breath and my heart felt like it was skipping beats.

I went to see my doctor the next day. Only he wasn’t available so I saw his PA. I have nothing against PAs – it is actually what I wanted to be when I started college – but this woman almost killed me.

I handed her this piece of paper.
Dx numbers
She left the room with my log to presumably speak with the doctor. She returned a few minutes later with a Post-It note. She told me I needed to call this number (an endocrinologist) because I needed to be put on insulin. With that, my appointment was over.

As I left the office, I waved to my doctor and he waved back. Everything must have been okay.

I called the endocrinologist’s office that afternoon and got an appointment for that Friday. I drove back up to campus to resume classes the next day. I was also interviewing students for leadership positions Tuesday night.

I had to leave part-way through the interviews because I felt awful. I could not be around other people. Later that night I was on the computer – on AIM with my best friend. I was telling her what had happened at the doctor the day before. Little did I know, she was also on the phone with her parents, telling them my symptoms and what the doctors had said. Her parents were very upset and told her to get off the phone with them and call someone at the school right away. All I knew was that suddenly she was not responding to my IMs.

Around 11 o’clock, there was a knock at my door, and there stood my best friend, my Resident Director, the Resident Director on duty (dorm parent for the older readers), and a Campus Security officer.

Would you believe that the RD on duty was a Type 1 diabetic pumper? I think his presence and knowledgeable convincing that night was the only reason I agreed to go to the hospital and not wait for my appointment that Friday.

We got to the ER and triage asked me why I was there – I told them that my friends made me. I was not doing well convincing them that I was really sick. They eventually took me back to a room and tested my blood sugar.

713

I was informed that I would be spending the night and they started an IV. Correction – they tried to start an IV but missed the vein and saline started building up under the skin of my right elbow. The ER was deserted and I could not find anyone to come fix it. Finally a nurse walked by. “Is it supposed to look like this?” and she quickly pulled it out and started a new one in my hand – much better!

Saline, insulin, and potassium and I was on my way upstairs!

It was about 1 am at that point, and I seriously debated calling my parents. I didn’t want to wake them up. I was convinced to call my mom, but I was so out of it, I have no idea if she came up that night or not.

The next day, a doctor came by to visit. He said they were reviewing my labs to see if I needed insulin or pills. He came back about 10 minutes later and said he changed his mind. My A1C was 12.6 and that mixed with my history convinced him I was Type 1. He also told my mom that the other doctor’s office never should have let me go. I should have been admitted straight from their office. My mom was pissed!

She called the doctor’s office ready to chew him out! He said that he had no idea I had been there two days before. Get this – the physician’s assistant never consulted with him on my case! She didn’t get fired but I wish she had! Then when I saw him on the way out, he did not recognize me. I was about 20 pounds under weight and my blond hair had been dyed deep red. Heck – I didn’t recognize me. He felt really bad and was really apologetic, but I have never stepped foot in his office again!

*******
Part 4 – Four Days in the Hospital and a Trip to Vegas

Where we last left off – my primary doc had almost killed me and the hospital doc had decided I was definitely Type 1 and should start MDI.

The doctors and nurses didn’t really give me an option to be nervous about taking shots. Handed me the syringe and off I went! Mildly annoying though when they kept bringing me my meals but forgetting to bring me any insulin!!

I was on the diabetic floor so there were a lot of old people around dealing with some pretty serious complications. My first roommate was really great though. A pumper too. From what I remember, she had the flu or a cold or something and just could not get ahead of her numbers. I was sleeping most of the time but we had some good conversations.

My second roommate made me want to leave the hospital as fast as I could. I had the bed by the window so she obviously took the one by the door when she came in. And she wanted her privacy so the curtain was drawn the WHOLE time. Talk about claustrophobic! And the only show she watched (and seemed to be able to find on any channel) – COPS!

She also had spinal bifida and was having some issues with some of her dressings. Man, the nurses could not do anything right to help her with them. It was nothing but whining, complaining, and yelling at the nurses the whole time she was there.

Thankfully (?) the hospital was about 5 minutes from my college so I had a ton of friends who came to visit and brought me lots of fun gifts to keep me entertained. Despite that, on the morning of day four I started crying and I just could not stop. I can’t remember the reason – and honestly I don’t actually think there was one. I just wanted out of there. I think the staff understood because I was on my way home that afternoon.

*******

Well, that is the story of how I was diagnosed with diabetes! Not as crazy as some, but I think it has some ‘interesting’ twists and turns of its own.

If you have made it this far congrats and I hope you enjoyed it!

P.S. The next weekend I had a scheduled trip to Vegas with some of my friends for my birthday. After much convincing and cajoling of my mother, I went as planned. I had one crazy low at the end of our trip but otherwise it was great – I mean other than the fact that I still look like a skeleton in clothes that don’t fit (see below).

P.P.S. I was not given any further testing at the time. My current doctor (in 2010) tested my C-Peptide and presence of various antibodies. With those result combined with my insulin needs/profiles and family history of other autoimmune issues, she concluded that I do not have LADA, but “typical autoimmune Type 1 diabetes”.
out of hospital

Who’d let a little diabetes spoil their first trip to Vegas? Not me?

  • Steve Parker, M.D. says:

    Thanks for sharing your story – it may help someone else avoid a delayed diagnosis, particularly if more primary care medical providers read it.

    -Steve

    May 27, 2011 at 3:05 am
  • Brian Bice says:

    Glad that you made it through all that. Hope things work out for you for the best in your life and I think its great you have family and friends who help.

    October 28, 2011 at 6:23 am
  • Rachel says:

    Every once in awhile I read your blog posts, but today I decided to read your diagnosis story. It’s refreshing to see someone else diagnosed with Type 1 as an adult. I was hospitalized in August with DKA and my only symptoms were weight loss and severe thirst which my husband and I attributed to other things. Until I came down with what felt like the worst stomach flu that sent me to the doctor who gave me a pregnancy test.

    I appreciate reading diagnosis stories because I’m so new to this. And thank you for blogging!

    November 1, 2011 at 10:03 am
  • Marisa says:

    Just read this and had flashbacks… So proud of you and all the work you do in the diabetes world. You are awesome.

    December 23, 2011 at 2:24 am
  • Nick says:

    I just finished ready your story and it reminds me so much of my self. I too was misdiagnosed due to the “honeymoon” period. Your story of losing weight, leg cramps, crankiness reminds me of everything I experienced but didn’t think much about. Thanks for sharing.

    January 23, 2012 at 3:42 pm
  • Ivy says:

    Just read your story Sara. It’s just a resonating theme with young adults getting misdiagnosed. You have an awesome best friend. Congratulations on living with D positively, and helping others along the way.

    February 23, 2012 at 8:17 pm
  • katy says:

    Whoa. Scary stuff. I’m so glad you’re fine.

    July 12, 2012 at 9:04 pm
  • Kelly says:

    Your dx story is a lot like mine….especially the grumpiness and irritability part! I seriously thought I was turning into a psycho chick, my poor kids……amazing a misdiagnosis like this can happen, isn’t it?

    August 14, 2012 at 9:31 pm
  • Ahmad says:

    Sara, I just read your Dx story. Misdiagnose is always an issue in D since early ages! You think we are over it with the advanced technology, but there is always space for the human error. Am glad that you have passed it with minimal damage. Keep Smiling

    September 24, 2012 at 9:39 pm
  • Chris Cusick says:

    Thank you for sharing your story. I’m amazed at how some Primary Care Physicians don’t understand the basics disease or the severity of high blood glucose numbers. When my son was diagnosed 6 years ago, we were sent home to “fast” even after his BG readings registered too high on the meter. Having not known a thing about Diabetes, I took to the internet and learned more than I bargained for. Additional tests the following morning yielded another high BG and the doctor recommended we “head down” to the hospital. I’m still amazed by her lack of urgency. Time passed and we found our “new normal”, but my wife and I couldn’t get over our experience with our MD. We switched practices and it ended up being the best move we ever made. I’ve learned not to assume that doctors know everything because they went to medical school. While our old doctor had no ill intentions, her approach and unwillingness to consult with someone else more knowledgeable placed my son in grave danger. Thank you so much for blogging about your experiences and shedding light on this disease we live with.

    November 14, 2012 at 4:10 pm
  • Jules says:

    Thank you for sharing your experience! I may be at the beginning of this story and after having been misdiagnosed with other medical issues including actually having Celiac Disease when assured I could not… This will make me push on for the correct diagnosis and not just accept the first answer. Thank you!!

    March 9, 2013 at 11:43 am
  • Melinda Seed says:

    It is amazing how often a common disease like type 1 diabetes is misdiagnosed. An Australian survey found that a third of young adults required 3 or more Drs visits to get a correct diagnosis of t1 diabetes. I nearly died in infancy as several doctors didn’t test my sugar when my unknowing parents took me to several appts to try to work out what was wrong with me. The misdiagnosis of adults with type 2 when it’s really type 1 is also common and can be life threatening. Diagnosing diabetes just shouldn’t be that hard.

    Also that bit about the Dr not knowing you’d been in the office-l seriously doubt that,l he knew you were there, he’s just trying to avoid being sued for malpractice.

    September 28, 2013 at 11:41 pm

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