Let me start by saying that I do live in gratitude and smiles and humor. It just feels better. I am lucky and appreciative for my life, my loving friends and family, a good education, 2 hilariously happy doggies, a beautiful home, gorgeous weather, the sun rises every day, I have enough to eat, I have a bed to sleep in, indoor plumbing, a small voice in the diabetes community … I could go on and on. But I think you get the idea: I am thankful and happy to be alive in this fascinating day and age.
HOWEVER, sometimes there are just weeks that test me. Sometimes there are months, and luckily sometimes there are just days. BUT this has been a WEEK filled with frustration, anger, fear. Some of it touched me personally, some of it is just globally a diabetes life.
So, this is a vent blog. If you read this, thank you for listening. If you pass, I TOTALLY understand! Here goes, in NO particular order:
- The COST of insulin! Really?!?!?!? The price of buying insulin has risen nearly 200% between 2002 and 2013. When I first started using insulin in 1965, the cost of beef or pork insulin was about $9/bottle. And that required slaughter and processing of animal pancreases. Today we have human insulin, created through recombinant DNA technology, harvested in a yeast culture. NO HUMANS were slaughtered. The technology has been around for 16 years … it is not new.
Want to read a great article, by Dr. Irl Hirsch, a great diabetes researcher/advocate and a T1 as well? Diabetes Patients ‘Screaming’ About Insulin Costs
- CRAZY blood sugars! FOR NO APPARENT REASON!
You know what this is like. Sometimes it just happens. No point in overreacting … but still, gotta deal with it. Highs are exhausting. Lows are shaky and sweaty. I just want level, is that too much to ask???
- United Healthcare will make Medtronic its “preferred brand” of insulin pump for exclusive in-network coverage starting July 1, 2016! You’ve GOT TO BE KIDDING!!!
Of course, the entire diabetes community is up in arms about this (except for Medtronic!). How dare they take away our choices, which already are just a few, but they have significant differences. These are the times that I wish the CEO’s of these companies have a daughter or grandchild diagnosed with T1 … and that child wants an Omnipod, a t:slim or an Animas. NO, I really don’t wish diabetes on anyone, particularly not a child. But I just want them to understand the lack of humanity is the price of their greed. Here’s a great article from DiabetesMine, written by one of my favorites, Mike Hoskins: UnitedHealthcare Restricts Insulin Pump Choice: The Diabetes Community Responds!
- Dexcom’s Technical Support phone! There, I’ve said it! If you have any need to call Dexcom (a company that I really do love and appreciate, as having probably the best CGM on the market – not much competition though J), GOOD LUCK! The longest I actually waited on hold was over 90 minutes … until I hung up, as I do have other things to do in my life (like make it to doctors’ appointment, etc.). This happened many times. And I’ve heard of others holding for up to 3 hours!!! I also hear that you might have better luck if you call at 3am. BUT, you do have a choice, they say. If you leave your name and number, someone will return your call within 48 hours. 48 HOURS?!?!?!? I understand that they are trying to correct this major issue … and perhaps they are growing too fast, going in too many directions, dealing with unanticipated problems with bluetooth … whatever. I only call when I really need help. I consider my CGM to be a major tool in my diabetes management toolbox. Please, Dexcom, FIX THIS!!!
- Again, with Dexcom, a recall. Not a terribly serous issue. I heard about the recall but my CGM audible alarms were working just fine … until this week, when I stopped getting audible alarms. At first, I worried that I was losing my hearing … but my husband confirmed that there were no sounds.
Dexcom has a dedicated phone line for the recall problem and I probably caught them at just the right “wrong” time but my call kept getting dropped. So I went online and was totally unable to complete and submit the form! Then I had an AHA moment. I use Firefox as my browser … perhaps that was the problem. I opened Chrome and BAM, finished and submitted my form lickety split!
Hey Dexcom, you might want to know that your forms don’t work with all browsers.
- At a social event with a service club, one of the members (we’ll call him Mr. Mochi) who imports Mochi ice cream, a Japanese dessert, was serving Mochi for everyone to try. It is an acquired taste but sadly, I’ve acquired that taste! Another club member came up to me, holding her Mochi delicacy and said, in a smug tone, “I feel so bad for you, Joanne, because you can’t have these and they are SO GOOD!” Grrrr, really, a grown woman said that?!?!? Let’s call her Mrs. Evil. Even before I saw what she was eating, I pulled out my pump and said (perhaps I hissed), “Oh, I guess you haven’t heard about insulin pumps … all I need to do is push a few buttons and I deliver insulin so that I can eat yummy things!” I gave her an evil smile (appropriate for Mrs. Evil) and headed straight for Mr. Mochi. She was right, they were delicious. But just how mean-spirited can someone be?! My husband advised that I just let it alone, which I eventually did, after I grumbled a bit more1
- My concierge internist (in my area, about ½ of internists are in concierge practices, in which they say they limit their patient load, for which you pay an annual fee, so that they can provide instant and very attentive care) didn’t return my call/emails for 3 days! THREE DAYS! I finally sent him an email on Saturday, asking if he was unwell. He finally called at 6pm and apologized. Things do happen but in the midst of not hearing from him, I experienced great angst and yes, even fury!
- One of my specialists made a rare but not fatal diagnosis with a manageable but interesting treatment plan, including a restricted diet that calls for NO sugar and NO juice. When I asked what I should do if I have a low blood sugar, he replied, “I’m not an endocrinologist. Just do your best.”
Huh? So I asked him for a referral to a consulting specialist at a teaching hospital. He REFUSED to write me a referral or even forward my records … because it wasn’t his idea! WOW!!!
Again, great angst and more fury!!!
- Since high fructose corn syrup and fruit juices are not allowed on my restricted diet, for low blood sugars, I’ve switched to good ol’ glucose tablets. They’re not so bad, I’m kinda liking the grape ones. During a shaky episode, I dropped 3 tablets on the floor, they shattered into pieces … field day for my 2 pups! I commanded, “LEAVE IT,” but my Westie (who loves anything I am eating) seemed to be smiling and licking his lips a lot. Not a catastrophe but dang it!
- And to show you this it is not all health or diabetes related, my husband and I are in the process of remodeling … and that’s a good thing, albeit challenging and loaded with its own frustrations. We are trying to choose the right bedroom area rug. We keep bringing home samples rugs from the rug store … and each one is simply not the right one. On the positive note, we are getting WAY better at teamwork in toting the 8’x10’ rugs from the van, hoisted on our right shoulders, through the house and onto the bedroom floor. Practice, practice!
Here’s to believing that this week will be filled with fewer medical stressors and with more joyful and “quality” problems! J