...consistent with Malignant Otitis Externa...

The familiar antiseptic smell hits me as I walk through the ER door. I look around for someone to check in with, squinting at times from the bright open space and the drowsy blur of high blood sugar. I finally catch the attention of someone at the reception desk. I stand for several minutes, leaning on the counter, without any response from them. They don't realize I am a patient with an emergency. "May I help you? Are you looking for someone?" they asked. My red backpack slung over my shoulder weighs heavily as I calmly wait. They don't notice I am short of breath, having walked myself to the ER from my apartment, sick, in pain and with high blood sugar. I am 29, but look 22, by many accounts, which undoubtedly contributes to their incredulity. 

Straining to hear with one ear, trying to talk without enough breath and with liquid gravel blocking my throat, I say softly, "I'm here to be seen." "You're...oh you're a patient...oh, ok, what's going on?" I continue, clearing my throat, and trying to subtly turn my head to hear as well as possible."I have a bad ear infection...I have been trying to get it treated for a few days and I'm taking antibiotics, but it's much worse." Knowing the pain scale... I offer, "My pain is an 8-9 out of 10," trying to concentrate as my forehead, ear and neck throb with heat. "I have type 1 Diabetes and I've only been able to eat about half a sandwich today. I took twice the insulin...My blood sugar has been high for hours, I'm in pain, I have ketones, I don't know if my eardrum's perforated...it's ringing and completely clogged." They register me and I enter a small triage room, a little dizzy from my ear filling and draining, knocked out from the pain, my throat burning with dehydration. Everything looked a little off balance and I was ushered, shakily, onto a stretcher. The nurse came in through a door behind me and moved around to talk to me, ask history and take a blood sample including a finger stick. I am comforted by the quick treatment and think I am going to go straight back to see a doctor. He tells me they would most likely start fluids and IV antibiotics. All the while I think this must be why the Emergency Room here is so highly rated.

I am sent back into the waiting room.

I wait, in pain, with my eyes closed and my ear ringing, leaking and excruciating. There is more triage in a cubicle like area that has windows with blinds. The second nurse is not so helpful. He takes vitals and a rushed history while typing disinterestedly, half listening because he had to. I summarize that I have type 1 Diabetes, High Blood sugar (the fingerstick ER did was 399) and had been seen twice already for an ear infection that's much worse. I try to get the words out while keeping myself from choking on the congestion draining into my throat and with almost no ability to hear out of my left side.

I am sent back into the waiting room. 

I sit near the cubicle triage area. I figure if my eardrum perforates or I collapse or something they would see it and help. Naive. They signed up to help sick people, right? I didn't sign up to be sick...surely they understood that, right? Naive. I sit holding myself up in the hard chair, partly by hugging my red backpack. In it are a few books that I fantasize I'll get to study while waiting in the ER. My eyes are closed for most of the wait, blocking out the extra stimulus of sight and light because the ear pain and clogging was almost too much to endure. My ear is the size of my head, pushing, pulling, vibrating inside of throbbing inside of trembling. Scratching and stabbing with dull, flat and muffled hearing except for the crystal clear sound of my own breathing, sniffling and crackling of fluid. Tears begin streaming down my face as I sit, still, and silent. I struggle to keep from moaning awkwardly, out loud, in pain. Not tears of emotion...tears of pure physical agony and exhaustion. 

I open my eyes for a second to look around. The emergency room is still not that full, it's not a level I trauma center, why is it taking so long? I see patients getting walked back who arrived after me. Tears keep streaming down my face and as I look around I inadvertently make eye contact with the rushed triage nurse. He has no patient in his "office" at the time. He looks away flustered and closes the blinds angrily. Crash. I guess he doesn't want to see me. 

I wait longer. Then, they take me back.

Climbing on to a stretcher, situated between two curtains, I try to navigate my shaky body to judge the angle of the head of the bed and it's width. "Can you pull up the railing," I said. Click. I lie back on the hard foam, no pillow, and close my eyes. A blur of staff come through to take my history. An IV is started after I point out spots on my arm that I know won't infiltrate. Piece of cake. Matt walks into the room, backpack slung over his shoulder. He had been studying for law school finals. A Resident arrives to check my ear. He stands at my left side, takes a gentle look and asks questions. Matt says "She can't hear you out of that side." The Dr moves to my other side and starts drawing a picture on a paper towel. He shows me and says loudly, pointing to a drawing of an open ear canal, "this is a normal ear canal." Then he points to his drawing of two converging lines and says "this is your ear canal...swollen completely shut." An Attending comes in to examine the ear and the tender tissue around it. "You need a CT scan, I think your ear infection has spread to your skull base...the entire left side of your face and head are swollen." I feel a little stunned but too sick to react. I just shake my head, in affirmation, and close my eyes. Another Resident comes in, after a while, to clean my ear. He emphatically describes all of the "purulent and awful, red, black, yellow..." debris he removes from my ear, and commenting how bad the infection is.

Now admitted, I get fluids and medications. I communicate to staff an insulin dosage that I have estimated, without assistance, and take a bolus through my pump. Although I have dangerous signs of acute Diabetes complications from the infection, the Diabetes takes a back burner for the entire hospitalization. Except for the hospital's inadequate "Diabetes protocol" I check my own fingersticks, figure out my own dosages and treat my own hypos. This ignorance and added burden frustrates me, from extremely late meal trays, to surly or no response regarding hypoglycemia. After all, I wouldn't be in this predicament if not for the Diabetes, but I need to just keep "one eye open" and pull myself through it. I've just got to figure it out, I think to myself, and get well enough to get back to my classes and life. My shoulders tense. 

My bed is ready. 

Staff helps me onto another stretcher, laying the cold IV bags next to me, bumping my bare shoulder. We roll down the hallway. I hate rolling through the hallway on a stretcher. It's bright, cold, I look and feel awful, strangers and staff look. There is a breeze from the motion. I shift my eyes downward to check whether I am covered. Ok, I have a blanket over my haphazard gown now. The wheels on the stretcher continue to screech and hum. We get to my room; my bed is next to the door. I have a roomate who is snoring. It's about midnight. I explain that I haven't eaten, and a tech brings me a turkey sandwich, packaged shortbread cookies and an 8oz diet gingerale from the unit fridge. I eat voraciously, salty, sweet and artificially refreshing. At least I have a pillow now, and it's dark. Sleep.

Sleep. Wake up to nurses. Sleep. Wake up to pain. Sleep. Wake up to roomate. Sleep. Wake up to bright lights abruptly turned around me. Deep breath. I guess it's morning. I yawn and squint my eyes. The whole "crew" was standing around me, eager to see what was probably the youngest malignant OE they had ever seen. Several ask questions and histories. Some look at the ear and then they leave. Sleep. 

A few bites of lukewarm oatmeal and tea for breakfast. In walks a senior medical student. He acts as a Liason between me and staff. I am thankful for his help and communication efforts. He leaves. The ENT who was in morning rounds walks in, examines the ear and cleans it again. He says a bunch of stuff. I mention that my blood sugar is still h...He cuts me off and says "Well, that's because you're in the hospital..." He leaves. 

It's after lunch and I notice how grungy I feel and remember that I had not been given a new gown or any toiletries. I have to go to the bathroom. I sit in bed for quite a while contemplating using the room's bathroom. I finally get up strength and am motivated by the indignity of having to use a bedpan and wobble over to the bathroom. I look around and notice that my poor roomate had left bodily fluids around the bathroom, including a stool sample. My heart sinks and I peek out of my room to get the attention of a nurse. They say I can use the staff bathroom.   I do and return to bed, still grungy and waiting for the requested help with a new gown etc. I wait.

It's evening and the nurse comes in to tell me that they are moving me to another room. I go. Another night of sleep and interruptions. My pain is a 6/10. I wake up in the morning to a similar scene. After lunch I remember I am still in the same gown, and without toiletries. I had mentioned it the nurses several times. My friend the med student walks in and I let him know. He says he will get a PCA to help. Oh good, I thought to myself, as a PCA walks in... I perk up and start to ask her for help...She keeps walking past me to go to my roomate. As she leaves I catch her attention and tell her it's been two days since I've changed. She keeps walking toward the door and says "Sorry, you're not my patient." Later someone finally did help.

My med student friend comes back late in the afternoon and explains that I would be getting a PICC that evening so I could be dischared on IV antibiotics...hopefully the next day. My favorite. Knowing it was fruitless, I tried to talk him out of it and asked him to find out what alternatives there were. He made a valiant effort. 

In rolls a screechy cart being pushed by a masked IV nurse. She was confident, and had strong looking arms. I tell her that PICC lines aren't my favorite. She explains the procedure and proceeds to double numb my arm around the site and inserts the line without incident. Why didn't they double numb the site the other times? I thought to myself. Piece of cake. 

I start to consistently get my appetite back that evening. I sleep a little more comfortably except for some swelling with my PICC. My pain is a 4/10. I spend most of the next day in the hospital and get disharged some time after dinner. Matt arrives to bring me home and I begin to fantasize excitedly about the prospect of taking a shower and make sure I have the supplies I need to wrap the PICC. This trip to the hospital is a wrap. 

I return to class a few days later and even hang a bag of Meropenem in my VW GTI before a Microbiology lab (I actually have a picture of this somewhere). I don't want to be late so I try to squeeze the bag a little so it would go in faster...I rock that lab...and the whole class. Afterall...I have an increased depth of perspective on the effects of infectious disease. 

Hypos...?

"Ehh, Hypos?"asked, in a thick Israeli accent, by the doctor who takes care of my Diabetes. The question is to inquire about hypoglycemic episodes (low blood sugar). The answer, unfailingly, is "Yes." Not only a couple of episodes in the past few months...but, often, a few a day. No big deal, right...just eat something, have some juice, right? Well, in my experience, although some healthcare professionals and most lay people view low blood sugar as an occasional "something to take care of." It's often an actual medical emergency and, even when treated diligently, can affect the way you feel, not only during the episode, but for hours. It can also contribute to blood sugar swings and rebound highs. So if you have 2 or 3 or more a day, then "poof" there goes the day.

I've been laughed at by a nurse, while NPO (unable to eat), in the hospital when I tried to calmly explain how fast my blood sugar can drop and that we needed a plan (my blood sugar was already in the 60's). I have learned to hoard juice from meal trays in the drawer next to my hospital bed because, often, no one responds to the call bell in time... or at all (even though I never ring the bell for anything frivolous). My personal favorite is when a PCA is sent in by a nurse with a sugar-free "gelatin" or drink. When I explain that I have low blood sugar I am unfailingly scolded and told "you can't eat sugar, you have Diabetes"...Thanks...now you can get back the guy in bed 3 who is in urgent need of more salt packets.

While pregnant, I've been told by a Nurse Practitioner-Certified Diabetes Educator (CDE) that I needed a "Cognitive Reframe" if I inadvertently had too much carbohydrate to treat the constant 30s I was waking up to in the middle of the night. The dazzling ineptitude of that one still makes Matt and me laugh. If he hears me treating a low at 3am he'll wake up and say "are you ok," and I'll sometimes respond "yep, just need a reframe." If that lady only knew I had trained and worked as a cognitive behavioral therapist...I never mentioned it to her. There was that time when two doctors (one of whom touted a focus in "Diabetes") stood next to my bed while I, coincidentally, had a glucose in the 40's and they said to each other in amazement "wow that's low." With looks of concern they paused at my bedside. I calmly told them I needed someone to get me some juice. There are so many stories like these, but no room to write them all here.

My first real hypo outside of the hospital was bad. It was a couple of weeks after I was discharged and we were back in Pittsburgh. We had just eaten lunch. I took insulin after ordering my meal as I was instructed to...roughly 15-20 minutes before eating. I got my meal and ate. I shook visibly and sweated through my clothes as we walked to the parking lot and continued to shake and sweat after gobbling, and gagging on chalky glucose tablets. I felt cold from the sweat and my tongue, lips and cheeks were numb for quite some time after. My mouth tasted of metal, which I found out years later was probably Epinephrine and maybe some ketones. 

A blood sugar of 49 is low and can be dangerous especially for someone taking insulin, but I no longer feel those obvious symptoms at 49. 60-45, I sometimes feel hunger, butterflies in my stomach and start to lose concentration. If my husband is with me, he notices the difference before me. At 44 I start feeling jittery and shaky and fumble for sugar or food and I drop things. At 35 I sweat and feel lightheaded. 25 is all of the above with a racing heart, cold sweat through my clothes, and the metallic smell lingers in my pores. At 25 (thankfully, I usually avoid these) and lower I usually need a shower and a nap after it's treated. Think "Shelby from Steel Magnolias"except without the Southern accents and dramatic crying... Wait, you didn't know? yes, Shelby was a Type 1, when treatment wasn't as good, I bet she was on NPH insulin...or NPH and Regular....I digress!Treatment gets more difficult the lower the number is and the longer it lasts.

Unfortunately, no matter how much my insulin is adjusted, how diligently I check my blood sugars, or use a continuous glucose monitor with an alarm, I have hypos. It can be very frustrating. My sleep is often affected. Normal activities are constantly interrupted. Running to the supermarket. Going for a walk. Going to a preschool open house (and stealthily eating loose glucose tablets along with some pocket lint). Taking the railroad. Walking in Manhattan. Laundry. Cooking. Going to a kid's birthday party while trying to talk to other moms, watch my kid and subtly treat (multiple times) the 45 that has lasted the better part of an hour. I could write a whole entry about the many adaptions I made when I was working. I've had lows while running to doctors appointments...

Once my glucose was 33 at a Opthalmology check up. I was pregnant with my second child. I regularly experienced multiple hypos a day, often sustained, during my pregnancies. I was sitting in the waiting room  with my two year old waiting for the eye dilation solution to kick in. I didn't feel the low yet. Just a little tired. Just a little nauseous and shaky. I just checked my blood sugar when I started the 5 minute drive to the appointment, it was in the 90s. I sat in the chair in the exam room and it hit me like a truck. I winced and pulled away as the Doctor neared my eyes. I froze a little. I said awkwardly, "I need to check my blood sugar." Sure enough it was 33. I calmly told him I had glucose tablets and started to eat them. He asked if I needed something else and, although I said "no," he came back with a small (lime) lollypop for me. I politely gave it to my son who was applying stickers to the walls at this point. The Ophthalmologist was kind to help, as is his usual personality, and it would have been unfair for me to expect him to know how to treat a serious Hypoglycemia. He gave me extra time with the appointment and checked up on me. He admittedly had never once seen a hypo this low (and it sounded like he had never seen one at all). The blood sugar swings I had often told him about were now illustrated and it seemed to, thankfully, make an impression. 

Long story short...Hypos are frustrating. Blood sugar swings make me feel sick every day and cause me to work extremely hard to function adequately. Thankfully, though, technology is improving rapidly. I think it will get better soon. I've been cautioned not to be naive about the swings "going away," but I remain faithful that they will be more manageable. There are some scientists out there who care, and have direct personal experience with Type 1 Diabetes which must drive them to make sure it gets better. It's gotta get better.

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.