Flatbush Diabetes?

During the 25 minute ride to the hospital my mind was flooded, but I kept a relatively calm demeanor. I called Matt to tell him I was going to the emergency room. We agreed that I would call him again when I went home, LOL. At one point, it hit me that this could be significant. What if it affected my ability to have children, which we were planning. I cried. It was the only time I cried about this disease until almost eight years later when I was pregnant with my second child. When we got to the hospital, they took me back right away.

A parade of doctors, nurses and techs came into and out of the room. An IV was started into a dehydrated vein while each person asked me to recount my health history. It was still the beginning, I didn't realize that I should be thankful to have had very little health history to review at that point. One ER doctor talked to me briefly then circled to the end of the bed looking at me intently the whole time, "We're just going to call this Hyperglycemia (high blood sugar)," he said nodding with nervous self assurance. I could almost see his heart rate increasing as he spoke. The parade continued. One doctor came in and told me "it sucks because you're young" as she started an insulin drip that provided far too much insulin, far too fast. Her decision was quickly questioned by my mother, also a type 1, and the dosage was appropriately reduced.

Finger stick after finger stick, more doctors and nurses as the hours went on. A critical care Attending and his Resident came in. The Resident looked just as nervous as "Hyperglycemia" guy above. The attending spoke as his subordinate looked on "You're really sick, you need to stay in the hospital." Still in disbelief, "How long will I be here?" I asked."Not sure," he said "A few nights at least." He looked at my mom and said "She'a going to the ICU." 

I continued to have critical care for many more hours in the ER. I was officially admitted to the ICU, but the decision had been changed by the time I went upstairs. I went to a room in a Medical unit. The same critical care doctors visited me again and said I was still very sick, and that they would check in with me later. The Resident said,"let me know if you need anything." I shook my head in affirmation naively taking his words seriously. I never saw them again. 

Though my insulin drip was continued and I was transitioned to injections for the first time, my fingersticks went abruptly from hourly to every SIX hours, except when my mom asked for more. "She just started to take insulin, isn't there an Endocrinologist?" she scolded. I was too sick, and weak to process was going on and only knew later how astute my mom was. I momentarily regressed to an embarrased teenager as she clarified the treatment plan with staff.

The saliva started to return to my mouth in early morning and I fell, uncontrollably, in and out of sleep. I started to feel hungry again. My "delirious" fantasies revolved around Taco Bell and Chocolate cupcakes. Man I want to eat again, I thought to my self as images of crunchy, salty tacos and sweet, delicous cupcakes swirled through my mind. I fell asleep for a bit longer and woke up to daylight. A doctor stood at my bedside and asked how I was feeling. I mentioned that the bad taste in my mouth was better and, emphatically, that I had saliva again! "When can I eat," I asked, "Not yet, we'll try later," he responded. 

At some point my mom called Matt. She told me that he choked up. This must be serious, I thought. In the almost nine years I had known him, I never once saw him cry. He drove through the night from Pittsburgh to be with me. He even managed to bring flowers that matched the arrangements from our wedding. What a great husband. 

Visits from doctors, nurses and techs continued.  An IV nurse came to change the site which had infiltrated. I saw her again during a subsequent hospitalization (she remembered me) and her quiet presence, and apparent skill in changing my IV while I was mostly asleep was actually a comfort to me. I also had my first experience with a "surly" healthcare provider, a "personal care assistant" who came in to do a finger stick. She yelled at me in denial when I pointed out the alcohol wipe she used on me was dry. 

Interesting, by now it had been about 36 hours and still no diagnosis. Still no Endocrinologist. A general medical attending came in at some point during the second day. He gave me a general spiel about the signs and symptoms I had, after he and two students put stethescopes on me at the same time ...without warning...not a fan. He explained high blood sugar in a rushed tone and then looked at me and said, "You're 27 years old, healthy girl, I don't know what this is, I think it might be 'Flatbush Diabetes.'" "Flatbush Diabetes...what's Fl..." He cut me off and explained that it was a "temporary" form of Diabetes that could occur from infections (which I had recently had) and international travel (which I had recently had). I perked up at the temporary part. he left the room soon after. I never saw
him again. 

I didn't have Flatbush Diabetes. It's a form of Diabetes that, at the time, was even more incompletely characterized as it is today. From what I recall, it's rare, found in Carribean and Sub Saharan African, overweight, middle aged to older men. The temporary part, I think, referred to the idea that Flatbush Diabetes is not autoimmune and can remit easily after initial treatment. I don't know why that doctor suggested that. I still wonder if he just missed the mark, or he didn't want to break the news? Who knows.

Enter: the sliding scale. After the insulin drip was stopped and I was started on injections it became clear that I was being treated with what is called a "sliding scale" insulin schedule. This basically is a "tool" to dose insulin based on blood sugar ranges and sometimes body weight. I have done a lot of reading and observing about the efficacy of the use of generic sliding scales. I have a lot to say about this, but since I am not presenting research...let's just say... IMHO, It's extremely flawed. 

It's "imperfections" became especially evident when my blood sugar was in the mid 200's and the nurse came in with a syringe filled with 9 units of insulin to correct the high. My mother, again (!) questioned the dosage. The Resident on call came in, fumbling as he pointed to the sliding scale sheet and explaining that, that was the right dose...because the paper... He left and the nurse explained that I could refuse the dose. I did. My blood sugar continued to go down from insulin I had previously for a meal. If I had taken the 9 units, it would have likely killed me. Not the last time I've wrangled with the sliding scale. 

Enter: the doctor's pants. Almost three days into the ordeal I saw an Endocrinologist. A flashy middle aged man with a crew of Residents and students who nervously nodded when he spoke, and laughed if he said something "funny." His pants looked to be about two sizes too small and suffice it to say he stood right at the head of my bed. Matt noticed too and we shot looks at each other, smirking. At least it was a moment of levity. He spoke dramatically explaining that I had type 1 diabetes and what that meant. I kept trying to ask him about the "temporary" kind. He just shook his head and didn't let me finish my thought. This time it was good to be cut off. He made it clear that I shouldn't get my hopes up and briefly explained some of the challenges I would encounter. I was overwhelmed, but at least I had some answers. What now?

Mr. Panky

My Pancreas, later dubbed "Mr. Panky" as depicted by a dear friend.

It was a Wednesday and a light day at work in March of 2006. My husband and I were living and working in Pittsburgh. I took off a half day because of a cold that wasn't getting better. It was the first time I had left work for illness EVER. It's not that I was never sick, I had URI's etc. fairly often, I was just not apt to rest for something that didn't seriously *make* me. Just a run of the mill upper respiratory virus. I relaxed on the day bed, watched TV with the cat (Nutmeg) and made a quick visit to the doctor. I resumed business as usual the next day. I was totally unaware that my life would change in about 3 months.

Nutmeg the cat on the day bed, in the room where I rested that day.

I had a check up soon after. I told my doctor that I had been feeling tired and at times, "shaky." I even stated that I thought I might have low blood sugar, and that there is Diabetes in my family. She attributed it to stress, said to "have snacks" with me and "she has experienced the same thing sometimes, and Diabetes would be unusual at my age." But, I was consistently feeling "off." I had some similar signs about 2 years before which I also mentioned to my doctor. My first memory, however, of feeling more definitively sick was in late April 2006.

                                          Blowing out Birthday candles for my 27th.

By then, I had little energy, even for one of my favorite things: entertaining guests at our newly renovated Pittsburgh home for Carnegie Mellon's Spring Carnival. It was my 27th Birthday and we had 20-30 friends staying or coming into and out of our home throughout that weekend. Three separate groups of friends remembered my birthday and brought me treats. I will never forget the feeling of being loved and appreciated. I stood at the edge of my dining room table with everyone singing a loud rendition of "Happy Birthday." Giggles and gales of laughter at innocent "inside" joke references was included.

It was great, exciting and fun. I just felt funny; a little shaky, a little dizzy, a little sleepy. I don't drink or anything, so it wasn't that. I started to mention to my husband Matt that I didn't feel right. We just attributed it to all of the guests, late nights and general excitement. I had been known to pick up sore throats and sinus infections after long fun weekends with friends and little rest. Maybe I was getting sick? Well, I was.









Fast forward to The end of May 2006. Matt and I had a big trip to Italy planned. We prepared and left Pittsburgh
without incident. First stop was my favorite: Rome. I was tired...and hungry... But it was probably just jetlag and no time off from a stressful job as a intensive cognitive behavioral therapist for kids. Right?




Then there was the spremuta. No, I didn't make that word up. It's just the Italian word for fresh OJ. Never really was an Orange Juice fan, but the spremuta in Rome was so bountiful that I started each day with it, and craved it. Spremuta in the morning and a seemingly endless appetite. At one meal in particular, I am fairly certain that I ate more than ever in one sitting. Oh! and whole 1.5 liter bottles (or more) of sparkling water at each meal. On to Siena, Assisi and Florence. Sleeping late, being drowsy in the afternoon then going to bed early became the routine...wait, what ? It WAS vacation, I had an amazing world right outside my window that I had no intention of missing, but the need for rest often took over.

We returned to Pittsburgh. My work schedule was 11am-7pm. I struggled to wake up in the morning, often with 11 hours of sleep. I would turn in for the night at around 8pm. I was dragging, tired, listless, weird feeling. Still.so.hungry. Still.so.thirsty. I was scheduled to train, temporarily, in the adult clinic that was sister to the pediatric clinic where I worked full time. I was keen, as usual, to learn everything I could, but it was so hard. My eyes were blurry, My legs were in constant pain, my stomach hurt and I.was.starving. I came close to falling asleep while trying to help run a group session. I even, strangely, went to my car to take a break and actually fell asleep. My breathing was so weird...the taste in my mouth was so bad. Just trouble adjusting to being home from a big vacation, right? I forgot to bring lunch and cash one day and begged the vendor in our building to give me a turkey sandwich and a banana, stating that "I would pay them tomorrow." They obliged and I thanked them exclaiming, "I'm just so hungry!"









Yoo Hoo and Slurpees became the next craving...and, ugh, the mango salsa. Remember those drinks that were popular during the 1980's?  I hadn't had either in about ten years...until we went on a long weekend to the beaches of North Carolina in mid June 2006. We drove from Pittsburgh to meet family for a few days in a great beach house we had rented. I had just visited the doctor for bronchitis with a concurrent UTI. I told her about the dry mouth, tiredness and funny breathing. She attributed it to the bronchitis. She told me I was "wheezing badly" and gave me some medication to help which I thought was responsible for making my mouth drier and taste even worse. While away I woke up every night with a mouth devoid of saliva. I would drink liters of Yoo Hoo from the stash that my Brother in Law brought. Matt and I thought this was extremely strange behavior for me, but I was just.so.thirsty. I was barreling toward critical illness with the remnants of Yoo Hoo trapped in my blood.

While trying to enjoy the trip I felt sicker hour by hour. The tasks of walking around, going to the beach and walking up stairs to the top of  a lighthouse were overwhelming. One night, we made grilled fish with mango salsa for everyone. I was excited to try the new recipe. The voracious hunger described above turned to nausea. I was unable to finish the meal and the thought of it still makes me feel sick. On the way back from North Carolina we stopped many more times than usual so I could urinate profusely or drink fluids. Once for a root beer float for me...once for a giant slurpee for me...which I finished. Gross.




We got home. I wasn't getting better. Still waking up throughout the night to pee, drink something and to try to rub the pins and needles from my legs. Randomly sitting in warm baths trying to "wake up" my legs became common. I was in a fog. My main concerns were drinking water, peeing, resting and trying to get the horrendous taste out of my mouth. Interestingly, Matt said one night, "Do you think you have Diabetes?" I said "no, that's silly...I would have passed out by now." By then it was the end of June and I made another doctor's appointment. I told the receptionist all of my classic symptoms, she gave me an appointment for the next week. I was all set for Tuesday June 27th. I never made it to the appointment.




My husband was scheduled to travel for work on June 26. I made the last minute decision to fly home on June 23, to my parent's in NY, for my Aunt's 70th birthday party. Good thing I did, I might have been home by myself in Pittsburgh for about 36 hours before the scheduled doctor's appointment. I continued to feel extremely sick in NY. On Saturday June 24, 2006 my dad and I went shopping for my mom's 60th birthday party that was planned for a few weeks from then. I had lost weight by this time and was so tired that I sat on a store shelf to rest. I wouldn't bat an eye at a four year old doing this, but I was 27!


When we got back to the house in mid afternoon, I just rested on the couch. Both of my parents thought this was strange. My mom, a Type 1 and my dad, a Type 2 Diabetic had blood glucose meters handy. My mom tested me on both. The meters just read "High," which meant >600mg/dL, aka higher than the meters could detect. Off we went to the emergency room. The hospital was quite an experience, which I will recount later. It's fortunate that my parents tested my blood sugar, and I wasn't alone. When I told one of the doctors that I had made an appointment for Tuesday, she said "If you waited for it, you wouldn't have survived."

Brittle.

The word brittle brings to mind something weak, easily broken, crumbling, cracking and fragile. For most people it stops there. Some folks may think of peanut brittle or brittle bones, but most will never understand or even contemplate the subject of "brittle" Type 1 Diabetes.

In the Type 1 community "brittle" is a controversial term that is not well received by many patients and clinicians. Certainly there are numerous individual reasons that the term is not preferred by some patients. What I have gleaned from a few fellow type 1's is that the term: 1) has been used as a medically incorrect, anachronistic label for them by an uninformed clinician, 2) or it is perceived to be an attack on their personal handling of their disease. Worse yet, some seem to generalize it to be an implication that they are somehow feeble minded themselves.

My experiences on the professional side have revealed that clinicians sometimes avoid the term because it is not viewed as politically correct. I can understand a negative, irritated patient reaction to a word like that, especially when one is not feeling well, and has explained their disease to blank faced clinicians over and over again. While I have had many...many...negative experiences as a patient, the word Brittle doesn't bother me.

I think it's a perfectly legitimate term when used properly. In my opinion, the word "brittle" is useful to describe a Type 1 Diabetic who has difficult to control disease.  BTW: I also don't have a problem with being called a "Type 1 Diabetic" as opposed to a "person with diabetes;" it's not all of me, but it's a permanent and pervasive part of who I am. After all, if someone is constantly having to check, weigh, measure, adjust all day.everyday and twice in the middle of the night.just.to.stay.alive.---then that seems like a pretty brittle condition to me.

As *people,* however, those "brittle" type 1's are probably paragons of strength, determination and ingenuity. I know my experiences as a "brittle Type 1" have honed my ability to adapt more than anything in my life...well, except for parenthood. Using the term accurately might actually empower those with difficult to control disease, instead of denying the "elephant in the room." Many professionals work under the assumption that all "diabetics" are created equal and will have blood sugars of "100" all the time as long they're motivated. This type of misunderstanding regarding what goes into staying afloat with Type 1 has definitely been disempowering when I have encountered it.

Some may be better off if we allow the word brittle to be used and accepted as a modifier. Perhaps pouring some of the negative energy used to oppose it into defining and applying the term appropriately would be useful. Eliminating "brittle" and it's implications, in my experience, actually further confuses some clinicians into thinking that type 1 diabetes is not a problem. I've experienced medical professionals who think it's just a "side thing" where "the patient" has to eat angel food cake instead of pound cake because "sugar." BTW: I have had actual clinicians *verbalize* the "pound cake" thing and countless advice like it. There also seems to be a common attitude that "patient empowerment" is all that is needed to keep someone well. While feeling motivated and empowered can assist with some aspects of disease management, it is unfair to assume that, that is all it takes, or that empowerment and motivation will always manifest itself in the way a healthy clinician might expect. After all... I didn't, we didn't ask for this.

Some of my experiences as a patient are akin to being fed to wolves. That said, I have also met a handful of amazing clinicians who have been just as great as the above described short sighted ones are bad. So, I have lots to say about the medical community and their understanding of what some call the "Orphan Disease." For now, though, I need to get my onset story out.

Brittle Blog.

The ten year anniversary of my official onset of Type 1 Diabetes fell on June 24 of this year (2016). I began writing down my onset story and experiences at that time, as well as personal thoughts about the disease, how it has changed my life, and the healthcare I have received. This is meant to be a personal account, a memoir per se. I realize that experiences vary and not all readers will agree with some of my thoughts, but there may be a common chord that is struck in some of my writing. The experiences and thoughts that I outline may be relatable to those with Type 1 Diabetes or other severe chronic conditions. My disease has magnified the suffering, joy, frustration, relentlessness and perseverance that is inherent in life.


The direct impetus to write down my story was the anniversary of my onset, my recent struggles with my disease and the negative impact it has had on my daily and overall life. That is not to say that I don't see the good in having a "different from average" experience in life, I do. Since my onset I have poured myself into learning everything I possibly can, including going back to school to become a Registered Dietitian in order to help others with Type 1 Diabetes and various diseases. During my academic and professional lives, I gathered and imparted as much knowledge about the disease as is possible. Many presentations, projects and encounters with any budding, or current healthcare professional have centered around Type 1 Diabetes.


Type 1 Diabetes has helped to push me toward a career that I love and enhanced my appreciation of my personal life. It has also, especially of late, impaired my ability to fully participate in both of those aspects of life. The writing that I started in June helped to remind me of the person I was before Type 1, gather some of those pieces and put them back into place. I plan to continue to write as much as possible as memories, experiences and thoughts continue to develop.

Disclaimer: This blog is a personal account. It is not a medical blog or meant to diagnose, treat or otherwise define or manage Type 1 Diabetes or any other disease or condition. If you have a  medical question or issue, please consult your personal Physician or other qualified healthcare professional. Copyright 2016. All Rights Reserved.