About Me…

Hi Everyone, Welcome to my blog page. I am both excited and nervous about the journey within these pages. For the past 19 years I have been dealing with a Type 1 Diabetes diagnosis.

I was in my early 30s and was completely blindsided by the diagnosis, I thought I had the flu! This shock transformed into dismay as I faced the reality my life had changed drastically. I had to learn how to give myself shots, I had to learn how to count carbs, I had to learn how to manage my blood sugars….blood sugars? What was that? I, at first, resisted the nurses at the hospital, denial is a strong weapon against the harsh realities of truth. And I lost something that I would not realize just how fully until 19 years later…hope. I remember the nurse who told me, “in six months you will be used to this and it will not be as overwhelming as it is right now.” She was right, we all adjust, no matter the news…eventually.

As time went by I did accept the reality of this disease. I spent time researching the outcomes of an unmanaged disease and read words like ‘loss of limbs’, ‘loss of eyesight’, and ‘terminal disease’. I felt I had no choice, I had to do whatever to keep myself healthy for a cure one day, not better treatment…a cure.

I didn’t hold much hope, until five years ago when I read a CNN article regarding a tiny laboratory in Boston, MA., on the campus of MGH (Massachusetts General Hospital). Dr. Denise Faustman had published an article about the effects of an old tuberculosis drug (BCG) Bacille Calmette Guerin on treatment for type 1 Diabetics. The first round of clinical trials established that the drug seemed to seek out the bad T1 Cells of the immune system that are responsible for attacking and destroying the insulin producing islet cells on the pancreas. Another astounding discovery was that while destroying the bad cells, it left the good immune system cells in tact and the pancreas began to regenerate new islet cells for the body to produce its own insulin, while not compromising the autoimmune system. SO EXCITING!!! When I read this article, I called Faustman Labs and asked about the next steps….phase 2 of the clinical trials. Five years ago I began traveling out to Boston, MA every six months to donate blood, provide urine and stay updated about when the FDA would approve the next phase of clinical trials…hoping to be a part of the trials.

Well, I was updated on April 6th, 2015, my last trip to Boston and the news was, to say the least, emotionally overwhelming. I have been informed that I have been accepted into the phase 2 clinical trial for the BCG injections on Diabetics who have had diabetes from 15-20 years. (the reason for this is they tested the first round of clinical trials on a similar population) I am not fully able to absorb what I am feeling. Hope is a funny beast, it can really mess with you. I have tried not to complain about my disease because there are so many more diabetics out there that have it so much worse than me. What I failed to realize is how much hope has been lost journeying through the years of the disease. Dealing with blood sugar highs and lows, all the while wondering what happened even when I was doing everything ‘right’. You see, Diabetes tries to steal your life one tiny bit at a time. While I know I have managed my disease reasonably well, I know I am losing ground each year that passes.

While a cure is not a guarentee, the hope is there and it is a strong infusion into my emotions. I realize I am tired, the disease has robbed me of my energy, emotionally and physically. How much has been robbed from me is what has surprised me. So what is next?

The trials are still pending final FDA approval and are tenatively set for Julyish. I am to receive two shots of BCG one week apart the first year, they will have me travel back to Boston at least four times the first month to ensure there are no issues or reactions. Then I will get one booster shot per year for four more years, with the FDA refining the protocol processes for followup. The extreme hope is that within this five year window my type 1 diabetes will be cured and I will be off of insulin able to produce my own, and the world will have its cure. I am one of only 180 participants in this trial, very small, yet the implications are huge. 19 years is a long time to be holding my emotional breath….Wow….just…wow.

So join me in my journey into the clinical trials. For more information about Faustman Labs go to http://www.faustmanlab.org.

4 thoughts on “About Me…

  1. I enjoyed reading your info. I’ve had Type 1 for 51 years and found out about your info from your friend Rosemary Johnson who lives in my hometown.

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  2. Greetings from Ohio! I am also a T1D, diagnosed at the age of 45 (as was my mother, who died of pancreatic cancer at 69 – hoping I’m not totally following in her footsteps). One of our two sons is also T1D, diagnosed at age 10, now 19. I am writing because I am traveling to Boston in October to give blood at the lab. It will be a whirlwind trip, but I will have four hours or so after my lab appointment and before I need to go to the airport and just wondered if you have any suggestions for things close by (a great restaurant with seafood for lunch? sightseeing options?). Thanks for any insight you can give me – I’m sure I can get info from the hotel (The Constitution across the street) but I am a planner by nature…..I am excited to see the lab in person and to be a part of something that could be big! Hope your time in the Phase II trials go well.

    My husband lived in Winona for a short time after college graduation and as an eastern Iowa native I drove through many times…Beautiful year-round but especially in the fall!

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    • Hi Barb,
      Thank you for your comment, depending on where you are staying there is a lot of things to do downtown in Boston, the lab is in the Shipyard near the USS Constitution and beacon hill. There is the freedom trail that goes by a ton of shops and restaurants, if you haven’t walked the freedom trail before I would recommend this as a starting place. Since you only have a few hours stick to one part of it there is lots to see! Otherwise if you know how to navigate the T you can go anywhere you would like for a $12 twenty four hour pass.

      The lab is small but the staff is awesome! Enjoy your time!

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