For a family with a child who has just learned he has diabetes, the first 30 days after diagnosis

Seems that every month or two I have another blog entry about the runaround I'm put through in

Seems that every month or two I have another blog entry about the runaround I'm put through in

For a family with a child who has just learned he has diabetes, the first 30 days after diagnosis

Wow nothing like mentioning iPhone in on your blog to generate some traffic. YDMV had unusually high traffic yesterday. Nice to know it is mention of a cool cell phone that the world wants to hear about and not the regular musings of a dad of T1 kids. Very humbling. LOL (But Hey iCan Learn! Look I have put iPhone in the title of this post!)For those of you who are new to YDMV let me introduce my standard rants about T1 diabetes information. The data needs to be ours, as in the people managing diabetes. It needs to come in industry standard formats so that We the People can choose the data creation devices that promote our Life Liberty and Pursuit of Happiness. We need choices in the tools to analyze our data from the devices we pick and all the tools and data should play nice together.See Swimming in the Data Stream Looking for the UN and I would Like a Side Oder of Holy GrailYesterday’s iPhone and LifeScan news brought these points to mind but I didn’t articulate my them (my rants) well at all. The BG data moving into an iPhone is all well and cool but if it is a proprietary J&J deal it is part of the problem rather than being an expansion of diabetes care options. Animas used to tout the fact that their ezMannager program could download all the major meter data. While the program was something less than wonderful the idea of open architecture was great. Look at an Animas pump now and it says OneTough right there on the front face where it doesn't say Animas any more. That and there isn’t the down load options there was. Sorry J&J but that is the wrong directions.We the People Managing Type 1 need applications that play nice with others. To get it we should use the ever popular market forces and choose the suppliers that provide open systems. OK OK there aren’t any. But we can deal with the fact that the vendors will try to tie us to their products by speaking up. Call your pump rep. Call your meter company. Write actual sail mail letters. (File> Print. LOL)Blog. Ask for open data architectures. Now this may mean your pump rep never calls you back, like our, but hey that tells you something doesn’t it?

I left work yesterday a little late due to a phone system problem that I was trying to help figure out. I try to make a habit of checking my BG before I head home so I broke out the One Touch and logged a 113.I headed out to the car and of course it is hot as Hades outside since it’s the middle of summer here in Southern California (I swear, it’s supposed to be 90 today!). I took my sweater off and hopped in the Murano only wearing my undershirt to stay cool.On the drive home I had both windows opened because it was so hot. I was sweating like crazy. Typically I am cold all the time so this was really weird. It’s probably because it has not been this warm in a while and I am so used to being cooler. Or maybe it’s the supplements I started taking that are supposed to help speed up your metabolism.And then it hit me. I am low.I started losing vision and quickly turned my blinker on to get off of the, very busy but still doing 60mph, traffic filled freeway. I grabbed my bottle of glucose tabs and chomped down as many as I could. The sweat was getting worse and my heart rate increased. Oh my god I was so scared. I was scared for everyone on the freeway. The last thing I want to do is know that my diabetes hurt someone else.Since all Southern California drivers are so kind, I was able to get off of the next exit. In hindsight I should have just gotten into the shoulder but I wanted to get off of the freeway entirely. I was terrified and as many of you understand, not thinking straight.I stopped, checked my BG and I was 85. I ate more tabs out of fear.Was I going to pass out? Was it because I have been so high lately that I only felt like I was going to pass out? Was I making it more then it was? I truly felt like I was going to pass out but I have to question myself after seeing the 85. Am I going nuts?

(a Dlife video on this subject)Monday evening the husband and I went to a D-talk entitled "Being Insulin Dependent in the Hospital." Not that unusual,I mean, there are many such topics of conversation being revisited all around the country, ad nauseum, at various pump group meetings. This place...was at a location I've never been to(some other D-group, not pump specific) and the guest speaker was a type 1 endocrinologist himself. With such a resume I could hardly NOT go, it was like being written a blank check to the secrets of the universe. (or at least to the hospital) I needed the hubby to come with me because #1 he was interested and #2 he's been to the general location and can therefore find the place much better then myself. Finding out what makes a hospital + the rulers therein tick would be more then beneficial in the future. Plus I figured I could get some questions of my own answered...beyond the generic "you may want to change x-y-z" material.The meeting room was small..and decidedly packed with PWD of all sorts and sizes. After the "Hi, I'm x and I've had diabetes for x years"(personally referring to myself as a diabetic still leaves an incredibly sour taste in my mouth and I rarely do it) intros the endocrinologist, sporting a Dexcom and Ping pump(bonus points for him!) launched right into the discussion.The meeting lasted about 2 hours and was not boring at all. Riveting talk/discussion, despite one or two individuals periodically launching off on some completely irrelevant topic then the one on hand which one couldn't exactly prevent/say something about because we're all there to support each other and sit through 10 minute rants on insurance not covering lancets.(for real-who complains about that??there are so much more worthy things to complain about) If you have a guest speaker, I think its pretty rude NOT to keep the questions to the topic of discussion. But anytime you have a physician and laypeople you are going to get someone reciting their entire medical history as they ask their question. Everyone suffers through it. And I managed to learn some stuff:-you always have the right to refuse the sliding scale and stay on the pump but if you're going into emergency surgery just give it up and resume when able. Emergency surgery, you should just shut up and be grateful if you make it out alive.(plus they tend to give some real whack-you-out drugs in emergency surgery) Elective surgeries...ALWAYS insist on pumping and if the surgeon doesn't like it find a new surgeon. In the ICU they check bgs so often that being on a insulin drip is the best way to go because you're drugged up and not able to make insulin decisions. Sliding scale anywhere=EVIL and under no circumstances should you be on one because its given according to the staff's schedule, not to your needs. People die of hypoglycemia IN THE HOSPITAL on a regular basis, and you sure don't want to be that person. Give insulin, recheck patient 6 hours later and they are dead because lunch was an hour late and they were too out of it to eat their lunch. Get the doc to write testing orders every 2-4 hours,or whenever necessary. -most surgeons are not sadistic hellions intent on inflecting as much inconvenience as possible, they are just uninformed. So says an endocrinologist. Um-I think I'll have to take a rain check on that one, guess I haven't yet met the "nice" type of surgeon. -Always bring your own lancing device(+ meter) ,never consent to their gullitine near your fingers. Much less painful with own lancing device.-saw several graphs documenting the 6x rate of complications/death from 200+ post operative bgs, even in people who don't have diabetes. (steroids can do marvelous things to the bg) Freaky scary.Bolused about five times that evening, bgs remained stuck in the mid 200's.It always makes me feel guilty, being at a D meeting and being high(as a pumper you should have the problem licked in about 1.5 hours) Definably need a basal overhaul. He also talked about all the changes they've made to their program and I was impressed(the power of a type 1 endo in bringing about REAL change for all the PWD in the hospital. They are going to have studies of intravenous CGM's in ICU patients.(since that is the most frequent setting for extreme hypoglycemia). The takeaway message was...communicate with the caregivers, call your endo if need be(doesn't work, but nice in theory),advocate for the basics of care. Because you're worth it.

Come on, like you didn't see this one coming.So just about everyone in my office is wearing green today, and there's a certain jolly, slightly-inebriated vibe to the place.  (No, we're not drinking.  Yes, we should be.  No, I don't...

Happy St. Patrick’s Day! Are you wearing green? Better yet, are you heading out to the bars after work to partake in a little St. Patrick’s Day celebrating?  If you’re a PWD, you might want to take a few minutes to take a look at your “diabetes plan” to make sure you’re set — assuming [...]

Happy St. Patrick’s Day! Are you wearing green? Better yet, are you heading out to the bars after work to partake in a little St. Patrick’s Day celebrating?  If you’re a PWD, you might want to take a few minutes to take a look at your “diabetes plan” to make sure you’re set — assuming [...]

So sorry for the bad pun. Couldn’t help myself.  But this is serious stuff, actually.  A small company out of Washington state is working hard to gather some much-needed data on severe hypoglycemia, and how we can better prepare for it and treat it. Apparently there’s not a lot of great existing data on severe hypo [...]

Riley is sick again for the fourth time in about six weeks. He’s had two ear infections, a bout with asthma, and now, he’s running a fever, no other symptoms, just a fever which has made his sugars go up.Last night he was sitting on the couch in between Michael and me. He eventually put his head in my lap. Next thing I knew he had fallen asleep. When Michael picked him up to put him into his bed he noticed he felt warm. I checked his temperature and it was 101.6. His only complaint all day had been a headache. His sugars had been good too, the best they had been in a while.Ibuprofen brought his temperature down. The regular middle of the night sugar checks including temperature checks. He did OK until about 6:30 in the morning when it started to rise again and he got more Ibuprofen. Somehow, his sugars were perfect all night long.That hasn’t been the case today. He’s been high all day. Right now he’s running at an increased basal to try and counter-act that.For most other kids, being sick is no big deal. As a mother you hate to see them feel bad. You worry about them, but not like you do when diabetes is involved. When your child with diabetes is sick, you feel more than sympathy, you feel fear. You’re on alert all the times anyway, but now you’re on high alert. Every little complaint could mean something. A tummy ache becomes a very big deal.It is days like today that diabetes slaps me in the face, leaving my cheek reddened. It stings and I feel my eyes fill with tears. My hand flies to my face and I rub my cheek wondering why I didn’t see it coming. I know I’ll deal with this and move on. The fever will subside and life will return to our kind of normal. Riley will have highs and lows. He may even have a few days of good sugars.The pain comes from knowing that it won’t last. Just when I convince myself that I can handle this, that we have things under control, diabetes will reach up and slap me in the face again.And again, and again, and again……

Riley is sick again for the fourth time in about six weeks. He’s had two ear infections, a bout with asthma, and now, he’s running a fever, no other symptoms, just a fever which has made his sugars go up.Last night he was sitting on the couch in between Michael and me. He eventually put his head in my lap. Next thing I knew he had fallen asleep. When Michael picked him up to put him into his bed he noticed he felt warm. I checked his temperature and it was 101.6. His only complaint all day had been a headache. His sugars had been good too, the best they had been in a while.Ibuprofen brought his temperature down. The regular middle of the night sugar checks including temperature checks. He did OK until about 6:30 in the morning when it started to rise again and he got more Ibuprofen. Somehow, his sugars were perfect all night long.That hasn’t been the case today. He’s been high all day. Right now he’s running at an increased basal to try and counter-act that.For most other kids, being sick is no big deal. As a mother you hate to see them feel bad. You worry about them, but not like you do when diabetes is involved. When your child with diabetes is sick, you feel more than sympathy, you feel fear. You’re on alert all the times anyway, but now you’re on high alert. Every little complaint could mean something. A tummy ache becomes a very big deal.It is days like today that diabetes slaps me in the face, leaving my cheek reddened. It stings and I feel my eyes fill with tears. My hand flies to my face and I rub my cheek wondering why I didn’t see it coming. I know I’ll deal with this and move on. The fever will subside and life will return to our kind of normal. Riley will have highs and lows. He may even have a few days of good sugars.The pain comes from knowing that it won’t last. Just when I convince myself that I can handle this, that we have things under control, diabetes will reach up and slap me in the face again.And again, and again, and again……

Recently, I've been struggling with the unending nature of diabetes. Wondering about how I can stay motivated when there's no real ending to this disease in sight. Working hard and remaining vigilant means I feel better day to day and...

bondidwhat on Flickr It seems like every time I meet a new diabetic, there is the normal discussion of management. The management of blood sugars, tricky situations, and the unexpected. We always hit the high points: A1c, what foods make things worse, number of lows/highs, and the rest of the "normal" diabetes lingo.   So every time I meet a new diabetic I'm usually thrown into the low blood sugar toss-up. As I talk about my diabetes, it is inevitable that I discuss lows. Because ever since I can remember, I've been prone to low blood sugars. And nearly every time, I get the normal response of "Your A1c must be great!" or "Oh, how lucky!"   read more

Some people find feet fascinating. I, however, have never found feet -- mine, or anyone else's,

Anyone mind if I go back retroactively and say my goal is to get my A1c under 6.0 this year? I’m pretty sure that was my goal at my last visit with Dr. Great and Powerful but I just didn’t say it out loud. I really like Dr. Great and Powerful Endo - even if [...]

The Supreme Court made the ruling based on a case involving a Vermont musician who lost her arm to an anti-nausea drug.

According to experts, people lie to their doctors for a number of reasons, but keeping secrets from your doctor can endanger your health.

The Panel Discussion at Animas on March 4th was GREAT.Basically 4 people (3 pump users and a parent of a pump user) had the opportunity to talk about how pump therapy has changed our lives, and our family’s lives for the better, to 2 groups of Animas employees. They had the chance to ask us questions about life with diabetes, life on the pump, life pre pump, etc.The panel consisted of:Ashley Enedict, an RN and Clinical Manager for Dexcom, and has been a T1 for over 15 years, She wears an Animas Pump and we’d met before. A few years ago I wore the Dexcom on a trial bases when it first came out, via a program the company was offering through my CDE. Ashley helped me overcome my CGM tech fears. It helped that she wore a pump and a Dexcom, and understood all my fears, both real and imagined!Ron DiNunzio: A T1 for over 37 years, Ron has had his share of ups and downs with the “Big D.” He’s managed to overcome some big challenges and is an UBER diabetes dude. The American Diabetes has recognized his work on a National level for his work in the Diabetes Community.Ron is the founder of weekend-end program called Adventures For The Cure/Extreme Weekend for Children with Diabetes. I’ll be blogging about the Extreme Weekend for Children With Diabetes next week. But check out the link until then.Don Plotts, Don is a parent of a Diabetic and works for Animas as the Manager of Sales Training. He first become familiar with Animas when he & his wife were shopping for pumps for their then 6-year-old daughter (who had been diagnosed at the age of 5) and is now 14.Don started working for the company a few years after they chose Animas as her pump.(On a side note, As a PWD, I always gain so much from a parent of a CWD point of view. Don talked about watching his then 6-year-old daughter injecting her shots and how his heart ached every time he watched her. That made me think about my parents and what they went through – and reminded me of all the parents whose blogs I read daily.)And then there was me, T1 for 31 years, pump wearer for 5 1/2 year. Currently I wear a Minimed 512 and am looking for a new pump. Full disclosure, Animas is currently on my “Pump Short List.”.All of us were asked to attend by my friend Bill King, Manager of Patient & Professional Relations for Animas, T1 marathon runner and Animas wearer.Bill I first met at the National DESA Conference in Colorado a few years ago, and have worked together on other projects since. Bill is funny, extremely positive, and a Sports nut to boot!Between the four of us on the panel, we’d had over 93 years of D experience. We were asked to talk about our lives pre and post pump for Animas Customer Service employees.All of us talked about the freedom that wearing a pump has given us. No longer are we slaves to the clock and are free from injection schedules; free from Lantus, and free to eat what we want within reason.We talked about Normal – the “Holy Grail” for all diabetics. Ashley, Don and I talked about how we craved being normal as teens, and wished that the pump technology had been available to us then.I discussed humor and how it helps me deal and own my diabetes on a daily basis & Ron agreed.Those of us on the panel told the Animas employees about the days of urine testing in glass tubes and fuzzy blue pills. We reminisced about the days of strict diets and food exchanges and having almost everything tasty off limits.We talked about the "Diabetes Police” and the guilt (financial, food, blood sugar, etc”) that accompanies being a person with diabetes. We discussed terms like “cheat,” “High,” and “being a bad diabetic.” We voiced our frustrations on not being taken seriously by medical and healthcare professionals.Don told the employees “Diabetics ARE experts on diabetes, so listen to what they have to say when they call. You might be the expert on Animas pumps and gear, but they are experts on Diabetes.” I have to admit, I liked when he said that! How many times have we encountered professionals in the health & diabetes arena who think we no nothing about our disease?The Animas employees wanted to know what Lantus shots felt like (I said something about injecting Orange Juice in your skin & watched as they squirmed). They asked what’s it’s like wearing a pump 24 X 7. We explained that while wearing a pump 24X7 does have it's own set of issues, the benefits of pump therapy are worth the occasional "Doorknob issues."I shared my blog and private email comments that you sent me regarding life on the pump. I also read Penny’s comment out loud and everyone in the room got a little emotional.After each session, several employees came up to me and said that they learned so much in the discussion and continue to learn more about the disease everyday. Many had family members who were diabetics and many employees were diabetic themselves. That meant a lot to me as a PWD. As for me - I learned SO MUCH & am grateful to have had the opportunity!