(This might look familiar to you …) A few weeks ago, I wrote about how I was seeking to learn more about my peers with diabetes, specifically folks with type 2 diabetes. Living with type 1 diabetes myself, it’s hard to me to “walk a mile in their shoes,” so to speak, when I felt so uninformed about type 2 diabetes in the first place. A few people left comments on that post, and I’ve been working to bring more of their journey with type 2 diabetes into the forefront, so I can learn from them, and so we can learn as a community.
Last week, John shared his story, and this week, Lorrian is sharing hers. Lorrian Ippoliti has been living with type 2 diabetes for almost 11 years, she is a native Californian, and she has been married to her husband, Mike, for nine years. Today, I’m grateful that she’s sharing her #walkwithd.
* * *
The year before my diagnosis, my primary care physician called me and told me that my annual blood work showed that my “sugar (was) high” and that I “should watch it.” Watch my sugar? What did that mean? I didn’t ask, and my doctor didn’t offer. [She certainly didn’t say anything about pre-diabetes]
The following year, my doctor’s office asked me to return so my doctor could review my blood work in person. My doctor told me I had type 2 diabetes, gave me a sheet of paper about low carb diets, a prescription for Glucovance, and told me to “call me after you pick a meter.” [My A1c was 13.4, but she didn’t explain what that meant]
That. Was. It.
No referral to an endocrinologist, no suggestions for reading materials or classes, no direction on how to choose/where to find a meter, and I was too stunned and frightened to ask any questions.
My husband and I researched diabetes (thank goodness for the Internet) and made drastic changes to our diet because of our fear, which led to multiple hypoglycemic episodes (chugging fruit juice in Costco, anyone?). A coworker of mine explained to me about meters and showed me how to test, and a coworker of my husband’s referred me to an endocrinologist.
The endo took me off Glucovance, which eliminated most of my hypo episodes.
Even with my husband’s support, the first 8 years were awful, full of misery and fear and guilt. The drastic diet changes we’d made were hard to sustain and I was constantly battling food and trying to make sense of how my body reacted to it. I somehow got my A1c below 7, only to have it climb back up to the 11-ish range as I alternately rebelled or gave into feelings of helplessness.
Eventually, that endo told me there was nothing else medically she could do for me. Yeah, a doctor gave up on me.
I completely gave up on myself after that. I continued to take my medications, but for about a year I didn’t see any doctors at all. I didn’t think anyone could help me or would listen to me. (Even my dermatologist argued with me about the name of one of my diabetes medications, insisting that there was no such thing as Glimepiride and writing down Glyburide in my chart instead, so I gave up on him!)
Eventually, my husband told me how worried he was about me and that he wanted me to live for a long time. Mike had found a nutritional therapist and we began seeing her as a couple. Then he asked me to see his primary care physician, who turned out to be the first doctor to listen to my frustrations and fear. He was so caring and agreed to manage my medications, but told me he wanted me to find an endo and gave me a six month deadline.
I found a new endocrinologist who is kind and compassionate, and both a cheerleader and a taskmaster. She listens to me, celebrates my small victories, and pushes me to accomplish more than I believed I could. Was there anything she medically she could do for me? Sure! She tweaked my medications, taking me off Glimepiride, increasing my Actos, and adding Lantus (insulin) and Victoza (an injectable which slows the emptying of my stomach). (These medications were all available when I was seeing the previous endo.)
I’ve gained weight using Lantus, but my A1c has decreased from 11-ish to 7-ish. I’m also back to having hypo episodes (one or two a month). It’s a frustrating trade-off.
About two years ago my endo prescribed a Dexcom CGM, which has helped change my outlook about having diabetes.
For example, my endo wants me to have a glucose level of 100 mg/dl when I wake, which has been impossible for me to achieve and made me feel like a failure. Using the CGM revealed that I have dawn phenomenon. Seeing my glucose level in action relieved a lot of frustration – and – my endo can see that I hang out around 100 mg/dl for much of the night, but my level usually rises 30-40 points starting around 4:30am. Plus, as an accountant I’m a data geek and having access to my numbers round the clock has helped me see patterns related to food and activity.
It has been an arduous journey since my diagnosis. I’ve gone through the various stages of grief – indeed multiple times it seems – and I believe I’ve finally arrived at acceptance. I can live with diabetes.
Kerri’s blog has been a touchstone for me throughout my journey – her openness about the challenges she faces have helped me know that I’m not alone, and I especially appreciate learning about the technology available to us. In fact, my endo was impressed that I already knew what a CGM was, and now I’ve added CGM in the Cloud/The Nightscout Project to my diabetes management. (I HIGHLY recommend it!)
I share John’s outlook on what the designation type 1 vs. type 2 means. Despite how we each developed diabetes, I feel that those of us with the disease share many more similarities than differences. I want to thank Kerri from the bottom of my heart for inviting me to share my story and I’m looking forward to the future.
Thank you so much for sharing your story, Lorrian!!!