Twelve years ago, I was diagnosed with Type 1 diabetes. Through hard work and the support of my wife, family and close friends I found the strength to manage that disease. Because of a recent challenge with another autoimmune disease, my wife commented that I had forgotten how hard it was back them. Perhaps I have. Perhaps that’s a good thing. Perhaps in another twelve years, I will be commemorating the “overcoming” of Graves’.
This photo sums up how I’ve felt recently. Exhausted, beaten down, feeling despair, depressive, highly emotional, and generally not well physically and emotionally.
I am under the care of a great endocrinologist, but until my Grave’s disease is under control, it has taken a toll. It affects my ability to work effectively. Now that I work in Manhattan part of the week and commute a little further into New Jersey for work, the stress on my psyche and body has been taking a toll.
The work itself isn’t stressful. It’s a commute to New York City. It’s two and a half hours from my door to the front door of the office building in lower Manhattan. Two trains (NJT and PATH) and one ferry. With my body hustling the whole time. Push my way past the other human cattle to maybe get a seat. If not, I’m standing for the entire 45 minutes express train ride to Newark Penn Station to catch the PATH. Exit NJT and hustle squeeze through the turnstile to catch the PATH to Exchange Place. The PATH Train is the worst. I never get a seat. I stand there packed in like a sardine with some sick asshole coughing on my neck. I feel like taking a shower from the filth of humanity all over me. I get to work, and my back is in pain. It’s an open plan seating space so I can’t put my feet up and I can’t escape to my car to close my eyes for 15 minutes.
Grave’s disease is playing havoc with emotions as well. I can go from laughing to anxious and sadness (sometimes despair) all within a few hours. I have little control over this. It just happens, and once it’s done, I feel emotionally drained.
I sleep but don’t feel rested. I haven’t had a restful night of sleep in over a month.
I am slower than I used to be. I don’t have the energy for activities that I normally enjoy — hiking and photography. Even family events like birthday parties and BBQ in the backyard are not enjoyable.
I finally broke down, crying while getting ready to drive to work on Friday. Bhavna took me to the E.R. where a battery of blood test revealed that due to interactions between some of the medications I was taken — most likely triggered by stress — I had early-stage hypertension. My blood pressure was high and trending higher. I was put on an I.V. drip, given a Percocet for the pain, monitored for several hours and sent home with strict instructions to discontinue my medication until I could see my primary physician and endocrinologist.
I must admit I was scared. And my poor wife sat next to me the whole time stressing out.
I am feeling better today. But not great. Not 100%. Not my usual self. I’ve lost control of my body. Perhaps that’s another stress point. With Type 1 diabetes, with testing and diet, I feel I have some control. With Grave’s, I have no way to test if things are improving or worsening. I have to do a blood test every six to eight weeks in a lab and wait 48 hours for the results. It’s not ideal. I’ve also had more years of practice managing my Type 1 diabetes.
I discussed buying a blood pressure monitor with Bhavna or at least taking a trip to CVS to test my blood pressure at least once a week.
It’s Sunday, and I am already dreading going back to work on Monday.
In the meantime, I am doing what I can — breathing in — breathing out. It’s all the control I have.
I just started using the MiniMed 670G closed-loop insulin pump system. The belt clip is a PITA! It’s difficult to remove from belts, pockets etc. The little tip at the end snags on the whatever it is clipped to. It holds the pump vertically which means I am constantly being pocked in the stomach when sitting in the car or at my desk or on the couch.
The horizontal leather case is out of stock on Medtronic’s website. I searched Amazon.com and found a universal cell phone case that is within the dimensions of the MiniMed 670G.
I also looked into a case for carrying extra diabetic supplies, e.g., infusion set, CGMS sensors, batteries, glucose meter, test strips, alcohol wipes, etc. But … most of the kits are designed for people using needles, syringes or insulin pens.
Does anyone have suggestions for a horizontal belt case?