I have a confession.

I love Pottery Barn. I want to take the entire store and just set it up in my house. Even the ugly stuff is nice. What is wrong with me?

Fuck You, Diabetes.

Fuck you, diabetes, for picking my life to complicate. I hate you for so many reasons, a handful of which are:

• I can't just eat anything I want, anytime I want because you'll kill me.
• I can't not eat because you'll kill me.
• My abdomen is a polka dotted mess.
• My house/car/office is littered with used test strips.
• My wallet/bank account is lighter because you cost me a fortune every month.
• I rarely sleep through the night because you're so fucking high maintenance.
• I have to buy clothes that will hide/accommodate the tools I need to survive you.
• My husband jokingly refers to me as his "little android" (this one is not so bad, but I'd rather be referred to as his "hot, healthy wife").
• My husband worries about my health.
• I can't leave my house without carrying a suitcase-sized purse filled with supplies to manage you.
• I can't just be tossed into a swimming pool in a playful manner because I'll ruin $10,000 worth of equipment.
• I'm exhausted from fighting with you all the time.
• Everyday, when I take a shower, I catch the loofah on my infusion set. Everyday. Single. Day.
• You've ruined countless dinners out, vacations, holidays, parties, and meetings because you're so damned unpredictable.
• I have to think about you 24 hours a day.
• I spent my first wedding anniversary feeling like shit because you decided to curse me with an inexplicable 400 mg/dl blood sugar.
• And, most of all, I fucking hate you for making it so hard for me to have a baby.

I can't wait for the day when a cure kicks your ass. Until then, fuck you, diabetes.

Pregnancy and Diabetes: Oil and Water?

Pregnancy and diabetes are two words that just don’t seem to go well together. Most women, when planning a pregnancy, think about things like vitamins, possible weight gain, morning sickness, food cravings, etc. For a diabetic, planning for and trying to conceive comes with a whole set of challenges that most women never have to think about.

For me, I’ve spent lots of time figuring out my body’s reaction to certain foods, so that I can take the right amount of insulin. I’m a reformed SWAGer (SWAG = Scientific, Wild-Assed Guess), who learned that those SWAGs were WAY off. Measuring food, eating only the serving size on the label, and bolusing BEFORE I eat are three ways I've gotten my A1c down to a level where I could actually start trying to conceive. Another is wearing a CGM. I used a Minimed CGM 1.5 years. It helped me tweak my basals, alerted me to lows (I have severe hypo-unawareness) and highs, and provided me with tons of data to better manage my diabetes.

Now, I’ve moved over to Dexcom. After a somewhat rocky beginning, the amazing folks at DexCom worked with me so that I could have affordable CGM coverage throughout my pregnancy, regardless of what my insurance will (or won’t) pay for. Fortunately, Aetna stepped up and is paying for my CGM and supplies at 85%.

So, with all my ducks in a row, we started trying to conceive. Unfortunately, it’s not as easy as we were all led to believe in high school. For over a year, we’ve been trying, but each month we’ve had to deal with the reality that it just didn’t happen. Does this mean that maybe I’m not meant to have children? Am I being irresponsible and selfish for wanting a baby when my own body makes it risky? Not only am I diabetic, I’m also hypertensive and 35 years old. Taken alone, each of those conditions make for a high-risk pregnancy; together they’re . . . well, I don’t even know . . . a trifecta of scary?

I asked myself these questions countless times over the past year. The conclusion I came to was the only one I could live with: I will have a child. If I’m lucky enough to conceive, then my body will not be my own during the pregnancy. I will eat the same foods everyday (the ones that give me predictable blood sugar results). I will not work long hours, I will stress less, and I will get more sleep. I will do whatever I have to do to grow a healthy baby. I owe that to the child, my husband, and myself.

But, if I’m not able to conceive, my husband and I will adopt. There are plenty of children out there who need a loving home. We can and will provide that – just ask our all-too-spoiled pets.

Starting Over

For almost 10 years, I've been told different things about my diabetes. I was diagnosed as a type 2, despite my young age, "normal" BMI, very high A1c, and no family history of type 2.

I was put on oral meds (metformin), which did nothing except make me incredibly sick. I vomited almost everyday while taking it, and my blood sugar remained high. This pattern continued for six months, with a few ER trips for DKA-type episodes in between. I changed doctors twice, but neither thought to test me for type 1. In fact, one even said that such testing would be stupid because if I was a type 1 and not taking insulin, I would be dead within a few days.

Like a good little patient, I believed them. I went to the required CDE classes, learning all about how my poor eating habits and lack of exercise caused my diabetes. I was the youngest and smallest person in the group.

After one year of taking metformin and losing 40 pounds (yes, 40!), I made an appointment with a new endo practice. I was immediately placed on insulin, which was an entirely new experience for a reformed needle-phobe. My doctor told me that I probably had type 1.5, but she did no testing to confirm. Since my treatment would be insulin, it didn't really matter what type I had (or so I thought).

After many years of MDIs, I decided to make the transition to insulin pump therapy. My endo at that time was a proponent of Minimed, so I went with their Paradigm 722pump. Eventually, I decided to ditch my doctor (she treated me like a child - threatening to withhold pump supply prescriptions if I changed any pump settings myself), and I found a new endo.

I began seeing Dr. S. about a year and a half ago. Our relationship started off well. He was more interested in my opinions and feedback than any doctor I'd ever met. He encouraged me to adjust my basals and worked with me to get a Minimed CGM.

When the subject of my "type" came up, I told him that I had never received a definitive answer. He ordered a c-peptide test, which came back low. Despite this, he decided to classify me as a type 2. I know why he did this. In the years since I began taking insulin, my weight has crept up to its now "obese" BMI. There are some underlying reasons for the most recent weight gain, but they're not really relevant to this issue.

Flash forward to last month. After using the Minimed CGM for 18 months, I decided that I'd had enough of painful insertions, bleeding, and sensor errors. I called DexCom, requested and completed the materials to get approval, and waited for my new system. I couldn't have imagined what happened next.

When Dr. S. sent the Letter of Medical Necessity, he classified me as a type 2 diabetic. He did this in spite of the evidence to suggest otherwise (lack of insulin resistance, low c-peptide, etc.). He also told the DexCom folks that I expressed concern over the cost of supplies as a type 2. While we did have a hypothetical discussion about the need to know what type I am so that insurance would cover my supplies, it wasn't with the understanding that I was a type 2. His statement insinuated that I was trying to pass myself off as a type 1 so that I could get "stuff."

Naturally, as a type 2, insurance is reluctant to pay for high-ticket items like pumps and CGMs for me. I immediately sent an email to Dr. S. to find out why he'd told DexCom such a thing. His response was that he "really doesn't think I'm a type 2." He ordered antibody testing to be sure, but he felt confident that his diagnosis (type 2) was correct.

I received the following email from Dr. S. last week:

" . . . labs showed a positive GAD antibody. In addition, with a fasting glucose of 146, the c-peptide was low . . . This is consistent with Latent Autoimmune Diabetes of the Adult, a form of Type 1 DM. I was not sure before, but it is clear now that you are a Type 1 diabetic."

To say I feel vindicated is such an understatement. I feel like I had to fight for this diagnosis for one reason: my weight. Doctors really need to step out of the box when diagnosing patients. Yes, fat people do get type 1 diabetes.

Gold Star for Me

As an update to my last post, I had new bloodwork done last week. The next morning (at a really early hour), Dr. S. called.

"Your cholesterol is awesome!" He starts off.

"Sweet!" I reply. "What is it."

"Well, your LDL is 80, which is even lower than we expected. Clearly a few weeks on Lipitor had a significant impact."

I was absolutely beaming. Then, I tell him that I want to stop taking the Lipitor and change my hypertension meds in preparation for pregnancy. Rather than the admonishment I expected, he was fully on board. I LOVE Dr. S!

So, after a fairly painless switch to Labetalol, which I can take during pregnancy, my husband and I are going to start trying to conceive next month! FINALLY!

The Principal's Office

Every three months I see my endocrinologist.  Usually it's just a recap of what's been going on, a review of my labs, discussion of medication needs, and quick exam (feet, glands, etc.).  Sometimes it feels more like a trip to the principal's office - I know I've done something wrong, but I don't know what the punishment will be.  

Last Tuesday I drove to my appointment with a feeling of excited anticipation.  Based on my CGMS data, I should have an A1c of ~5.8.  This is amazing to me since I've been trying to get below 6.0 for over a year (in preparation for pregnancy).  I walked into my doctor's office with an almost smug expression, waiting for him to deliver the good news.

"Well, Shannon, your A1c is quite good," Dr. S. proudly says.

"Sweet!  What is it?" 

"You're right at 6.8%."

"What the hell?"

After explaining that I was expected a much lower result, we review my CGMS data together (via Minimed's CareLink website).  He agrees that my average BG is much lower than the A1c indicates.  He then explained that he was becoming less confident in the accuracy of A1c readings.  Feeling quite a bit better, we move on to the rest of labs.

Dr. S.:  "Your cholesterol sucks."

Me:  "What is it?"

Dr. S.:  "It's 215 total, but your LDL is 140.  As a diabetic, your LDL should be under 100."

He then starts going on about statistics and how the LDL guidelines for diabetics may go even lower.  Being a diabetic is (apparently) the same as being someone who has had a heart attack. Everything must be lower than what a "normal" person has.  We discuss medications, fax off a quick Rx to my pharmacy, and talk about other things I can do to improve my overall health.

He indicates that as we get older, we have to pay more attention to these things.  He wishes me a belated happy birthday while I groan about turning 35.  He jokes that reaching that age as a doctor is a much happier experience - he's taken more seriously.  He tells me that he just turned 35 last week.  WTF? I'm older than my doctor? How did that happen?  

We move on to the rest of my labs.  Fortunately, everything else is great.  So far, I've had no complications of being a diabetic.  Hopefully, that will continue for another 10 years.

Finally, we cap off our visit with a discussion of my basal rates.  He doesn't want to change anything.  He suggests I review my patterns and makes changes myself.  For whatever reason, I'm still in the mindset of waiting for my doctor to change my basals.  Must come from having a complete control freak of an endo for my first 7 years as a diabetic.  Any unauthorized changes in basals were forbidden under penalty of prescription refill denials.  Perhaps this is why I feel like the endo = principal's office.

I left feeling like a bad pupil once more.  I really want a good report card next time.

And Your Little Fridge Too!

Back when I was working for a small IT consulting firm, I had a rather difficult relationship with the management team.  I was hired to manage a department based on my education, experience, and success.  Instead, once I was "on the job," I was expected to do everything the same way it had always been done.  Obviously, this was not a successful formula, and my ideas would have helped the company overcome some of its greatest limitations.  

I ultimately left that job for obvious reasons.  One example of the type of treatment I received was when I brought in a small fridge (brand new, super energy efficient) to hold my insulin, symlin, juice boxes, etc.  The only other fridge in the office was a community fridge in the "kitchen."  I didn't feel comfortable keeping my injectable meds in that fridge, and I was concerned that when I needed one, all of my juice boxes would be gone.  At every other job I'd had, a mini-fridge wasn't a problem.

So, after asking my boss about an expense report that still hadn't been paid (this company liked to play "funny money" with things including paychecks and 401Ks), he said, "That little fridge on your desk has to go."  Naturally, I was unhappy and asked why.  His response was that it will encourage others to have similar appliances in their offices or cubes.  I then responded that I needed a fridge because I am a diabetic with meds that must be kept cool.  He snapped, "This is the first I've heard about you being a diabetic."  I responded that I never mentioned it because it was (frankly) none of his business.  He told me to keep the meds in the community fridge.  I said I was uncomfortable doing so.  He said the fridge had to go. PERIOD.  I left his office saying nothing.  

About an hour later, I was summoned to the HR person's office (who just happened to be my boss' wife).  She said that if I needed to have a fridge at my desk (moving into the Americans with Disabilities Act), then I'd need a note from my doctor.  She used the term "make reasonable accommodations" several times.  Obviously, she told her husband that he can't just demand that I remove the fridge.  I told her that I'd have a doctor's note faxed ASAP.  

The next morning, note in hand, I marched to the copy machine.  I made one copy for HR, one for my boss, and one I stuck right on the front of the fridge.  Overkill?  Perhaps.  I didn't care.

The last thing I packed up when I finally left that job was my little fridge.