Hi! My name is Sandy Brooks. I chose to become a type one diabetic and it changed my life for the better!! Let’s face it…Diabetes sucks!!! But, I choose to live my life feeling positive and counting my blessings despite living with this disease.
I want to thank Sarah for asking me to write a guest post for her blog, “What Sarah Said”. I hope I make you proud!!
Besides being a great buddy of mine and my partner in crime as PODS leaders to our Diabetes Sisters support groups here in the Boston area, Sarah invited me to write because I have a unique form of T1D. I’m a surgical type one person with diabetes (PWD). I acquired my diabetes through having my pancreas removed due to hereditary chronic pancreatitis lasting for 27 years. I had my pancreas removed and an autologous islet cell transplant on my 52nd birthday. I didn’t plan to have the surgery on my birthday but it has worked out perfectly because it really was a re-birth. The life I had been living was over and a new life was beginning.
As a kid, I always had belly issues. My pediatrician called it a “nervous stomach”. This “nervous stomach” followed me through to high school and beyond. Things got worse as I got older and in my 20’s I decided to have this issue more thoroughly worked up. It took years to get a diagnosis of chronic pancreatitis because with this rare chronic disease, there are no blood tests to definitively define it. Also, there is a stereotype of only old alcoholics get pancreatitis and I had never been one to use, never mind abuse alcohol. Plus, where I was so young, no one even considered this to be the issue. Finally, at 27 years old, I got my diagnosis and the stigma associated with this diagnosis ensued. I was frequently accused of drug seeking due to my major symptom being excruciating abdominal pain. When I gave in and sought help in the local ER, besides a little anemia, my blood work came back fine. The usual suspects of a raised amylase and lipase in acute pancreatitis are not raised in chronic pancreatitis (CP). With CP, each flare or attack causes damage to the pancreatic cells and they eventually burn out and no longer produce these enzymes. The islet cells can be destroyed by CP as well, so if I hadn’t had my pancreas removed, I would have eventually become a type one PWD. I can tell you, in my opinion, there are few things more devastating than being told to” go home there’s nothing wrong with you” when you are experiencing excruciating pain!!
Fast forward to the late 1990’s, a friend forwarded a web address to me that she said I HAD to check out. It was from the University of Minnesota where they were developing a surgery to help those of us dealing with end stage CP. It involved a pancreatectomy and an autologous islet cell transplant. In other words, they removed the pancreas and harvested that person’s own islet cells and transplanted them back into the person’s liver, specifically the portal vein. Seemed very intriguing but it was only done at U of Minn and I lived in Boston. Plus, people either died or got slightly better only to die a short time later. Thanks, but no thanks!! I deal with the pain, thank you very much.
Then, in 2012, I was surfing the internet while I was dealing with a current flare of my CP, I was so discouraged and frustrated that I decided to look up the surgery I had heard of in the 1990’s and see if they had made any progress with this disease of mine. Unbelievably, one of the local Boston teaching hospitals, Massachusetts General Hospital, was developing a program specifically for this particular pancreatic surgery & the autologous islet cell transplant process was considerably better!!!! WHAT??????? I couldn’t believe it. I decided right then and there that I was going to contact that program’s lead doctor and see what it entailed.
Keith D Lillemoe, MD is my pancreatic surgeon & after meeting him and enduring several diagnostic tests, he told me I was a perfect candidate. I then met James Markmann, MD, the transplant surgeon and the three of us embarked on the journey that has lead me here. Needless to say, if I’m writing on a diabetes blog, you can guess that my islet transplant failed due to enduring years of chronic pancreatic disease resulting in islet cells that were too fragile to withstand the whole transplantation process. But the pancreatectomy did its job and the excruciating pain that I had had for 27 years was gone!!!!! Halleluiah!!!!! But…I had never even considered that the islet cell transplant would fail!!!!(REALLY!!!! I didn’t!!!) Now what was I going to do???? Suddenly at 52 years old, I’m a surgical type one diabetic!!!!! WTH!!!!
I’m not going to say it was an easy transition but I had the distinct advantage of being an RN and already understood much of what the disease entailed. But HOLY CRAP!!!!! No one in nursing school tells you how hard it is to manage your blood sugar!!!! (I’m not telling you all anything you don’t already know!!) And, technically I knew what type one was but I had no idea how my life was going to change. Plus, I didn’t know a single person who had the autoimmune type one, never mind the surgical type one!!! (I’m still having trouble finding anyone else that has had their pancreas removed. I’m beginning to think we’re more like unicorns and really don’t exist. But, if you know anyone who is a PWD due to having their pancreas surgically removed for whatever reason, I would love to talk with her or him!!!)
Many people have heard me say that I’m glad to have become a PWD when I did & that is for many reasons. A HUGE reason is the presence of the Diabetes Online Community (DOC). I found Kerri Sparling & Scott Johnson almost right away with just a simple Google search!!!! And I’m very thankful for them because I never would have successfully made it to my first diaversary with my sanity intact if I hadn’t gained the wisdom they provided me through their respective blogs, Kerri’s, Six Until Me & Scott’s, Scott’s Diabetes. On their blogs, I got diabetes info that no one else but a PWD would be able to provide.
Another reason I’m thankful for becoming a PWD in 2013 is because of all the D Tech (diabetes technology)!!! After 3 weeks of MDI (multiple daily injections) I requested…actually, it’s more like I demanded a pump! I was first told I had to wait a year but that wasn’t gonna happen!!!! The more research I did on pumps the more determined I became to get one. I was finally on pump therapy a month after my surgery and it was so much better for me than MDI. But of course, YDMV (Your Diabetes May Vary)!!!! I also use a Dexcom Continuous Glucose Monitor (CGM) and I consider it to be invaluable in my daily management. I’d give up my pump before I would give up my CGM and you already know how much I love my pump!!
Recently, the online group, Glu, had a question of the day asking what positive things had come out of your diabetes. (I’m paraphrasing because I don’t remember the exact wording). I have had many positive things come out of my diabetes. I have gone to incredible conferences, have learned more about myself in the process of learning about my disease, have become more resilient than I ever imagined I was capable of and met many awesome PWD both in person and online. But this question was met with outright anger. Many people were angry that such a question could be asked because in their opinion there was nothing positive to be gained from T1D. I come at this question from a different perspective. I had lived for 27 years with excruciating pain that disabled me from being able to work in the field I loved and made each day not only a living Hell for me but also for the people that loved me. So, I can kind of say that I chose to become diabetic rather than live one more day with that pain. I decided to have my pancreas removed to rid me of that pain & prevent the all too frequent hospitalizations I endured and I knew the risk was certainly pretty great that I could end up with surgical type one even if initially my transplant had worked. So, I consider each and every day that I wake up to be a blessing even with diabetes. The daily management of my surgical diabetes is a small price to pay to be rid of that pain. Does Diabetes suck???? Absolutely!!!! But it’s better than the alternative of being six feet under & pushing up daisies!!!!!
Thank you again, Sarah, for this amazing opportunity. If anyone is interested, my blog can be found at:
Muddybrooks.wordpress.com. Thank you for reading my post.