About Sue from New York

Type 1 diabetic since 1988 OmniPod pump Dexcom G4 CGM

A Childhood Spent Outdoors

Posted on October 1, 2013 by Sue from New York

Today is No D Day when those of us who normally blog about the D-word take time to open windows into other parts of our lives. Laddie, Sue from Pennsylvania, and I have each written posts with memories and photos of our childhoods. Thanks to George of Ninjabetic for organizing this day, and click here to read other No D Day Posts.

I grew up in the 50’s and 60’s in Scarborough, a seaside town in Maine. My dad loved the mountains, and we spent our summers camping and mountain climbing and our winters downhill skiing. My mother loved the water, so my parents would often compromise and we would camp at the lake. When we weren’t camping, we spent lazy days at the beach.

My brother Bill has a funny story of the time Dad took him and my other two brothers, Dave and Rick, skiing on Mt Washington:

“When I was in my early teens, my father decided that it would be interesting to climb Mt. Washington in the winter. We couldn’t afford to buy crampons, so he made four pair, for me, him, and my two younger brothers, Dave and Rick. We went up the carriage road from Pinkham Notch to Lion’s Head. Going up Lion’s Head was very steep, and the snow was deep. We were exhausted when we got to the top. Above Lions Head, the snow had blown away, which was good, but the cone up to the summit was pure ice. At one point close to the top, I looked down and realized that if one of us slipped, we would careen down the ice until we hit the rocks at the bottom. It was bitterly cold, and there was no one else on the mountain that we could see. I wondered if this was a good idea. Of course, now that I have passed my father’s age at that time, I realize he was mad!

We got to the top, but it was late in the day. My father said: “Now for the easy part, we just ski down the auto road”. However, the auto road was also pure ice, and we only had wooden skis! At one point, my father’s skis gave way and he slid down the slope out of sight. I said “Dad?” Luckily, he responded. I asked him if I should come down to get him. He said “No, one idiot down here is enough”. He took off his skis, put on his crampons, and climbed back up.

We got below the tree line at dusk. Now we had nice snow, and no ice. The auto road was wide enough that we could kind of see the boundaries in the dark. However, the car was not at the bottom of the auto road, it was at Pinkham Notch. Dad decided that he and Dave would ski down a hiking trail to Pinkham Notch. Dad told me to go with Rick down the auto road, and they would pick us up in the car. I asked him if that was a good idea, and he said he and Dave would be fine. Rick and I got to the bottom of the auto road, and waited, and waited, and waited. It was very cold. Finally, the car pulled up. I asked what took them so long. They said they couldn’t see the trail in the dark, and kept skiing into trees!”

That was one time I was thankful that Dad left me home in our warm house with Mom!

Oh No, Not Again!

Posted on September 30, 2013 by Sue from New York

Laddie: In last week’s post about frozen shoulder, I mentioned that my story is almost identical to that of Sue from New York. Similar age, same risk factors, and currently experiencing the condition for the third time. I wouldn’t wish frozen shoulder on my worst enemy and I’m sorry that my friend’s story mirrors my own.

My first bout with frozen shoulder (adhesive capsulitis) began in 2002. I had noticed that it was becoming increasingly difficult to put my left arm behind my back and I couldn’t raise it very high. I tried not to use arm and shoulder thinking that rest would be the best medicine. Because it continued to get worse, I finally I went to my family doctor who told me I had frozen shoulder. I had never heard of frozen shoulder before.

The doctor suggested physical therapy, and I made an appointment to go. When I arrived I gave them my insurance card and was told my copay would be $20 a visit. I was set up to go three times a week. I remember on one of my first visits lying on my back while a strapping young man took hold of my arm and tried to move it up, all the while straining and exerting a great deal of pressure. I was amazed that my arm barely budged, and decided that the term frozen shoulder was very appropriate. I continued my daily walks with my husband. One day while walking I stepped into a crack in the sidewalk and the pain was excruciating. After that, I carefully watched where I walked. My physical therapy progressed as my shoulder gradually loosened, and I was given exercises to do at home with an arm band. I went to physical therapy from January until May, when I was told I could stop coming but continue my home exercises. My frozen shoulder gradually recovered almost completely.

In 2007 I once again got frozen shoulder, this time my right shoulder. I didn’t have the degree of inertia that I previously had, so I decided to cope with it on my own. I did the exercises at home with the arm band, and a friend at work suggested some other things to try. Once again I gradually recovered from the frozen shoulder and moved on. I told myself that I was done with frozen shoulder since I’d had it in both shoulders already.

Now it is 2013 and once again my left shoulder is showing signs of freezing. I noticed it while descending the stairs and lifting my arm to turn off the light. I am being proactive and starting to exercise my arm, but I know that it will run its course in its own time, with or without any effort on my part. Because I was told during my first bout with frozen shoulder that it would get worse if I favored the arm and didn’t move it, I plan to keep using my arm and shoulder as much as possible.

And I will keep praying that number three is the lucky number that will end my story with frozen shoulder….

Thoughts on Brittle Diabetes

Posted on September 16, 2013 by Sue from New York

There was a recent blog post about brittle diabetes at Diabetes Mine in which the author says that for the most part, “brittle” is considered an outdated label. He also states, “But some disagree, saying “brittle diabetes” refers not to everyday ups and downs, but rather to a rare but real condition in which the PWD has volatile blood sugar swings that are nearly impossible to control. It’s known as labile diabetes in clinical lingo and there are some in the patient D-community advocating to bring more awareness and recognition to this rare and severe form of type 1.”

In 1975 when my son was diagnosed at age 4 with what was then called Juvenile Diabetes, brittle diabetes was an often used term for hard-to-control diabetes. And let’s face it, in those days it was a given that Type 1 diabetes as we now call it was hard to manage on the best of days. With a once-a-day shot of NPH insulin and no method of blood sugar testing, my son’s control was a wild guess based on urine strip results over three months. His pediatrician would look at the results and adjust the NPH dosage which would be the same every day until the next visit.

Fast forward to 1988 when at the age of 38 I was diagnosed with Type 2 diabetes. Several years later my diagnosis was changed to Type 1. From the start I had the advantage of test strips for testing my blood sugar. Several years later both my son and I learned to count carbs and give ourselves MDI (multiple daily injections). Now we both have insulin pumps and continuous glucose monitors which have greatly improved our ability to control our blood sugars.

One thing I have noticed through the years is the difference between my son’s and my level of control. He works a lot harder to manage his diabetes than I do. In the past he developed an extensive Excel spreadsheet where he recorded all of his food intake, exercise and insulin to share with his endocrinologist in the hope of achieving more stable blood glucose numbers. He has always had a difficult time with rapid blood sugar fluctuations and the addition of hypoglycemia unawareness compounds the problem. Yes he has the CGM, but with the 15 minute or so delay in the interstitial fluid catch-up, low blood sugars have caught him off guard many times. One time after he passed out from a hypoglycemic episode at work, he was admitted to a hospital for a week in an effort to get his blood sugars under control.

My diabetes experience has seemed to be much more level compared to his. In my 25 years of diabetes I have never experienced diabetic ketoacidosis (DKA) or even come close to it. In fact I believe that the highest blood sugar I’ve ever reached was at diagnosis and that was around 480. I never had the benefit of being tested for Type 1.5 or LADA (Latent Autoimmune Diabetes of Adults), but I suspect that is what I initially had. At this point I consider myself simply a Type 1 diabetic.

Sue from Pennsylvania’s husband was diagnosed with Type 1 diabetes later in life and his doctor has told him that he has brittle diabetes. Sue agrees with him.

Laddie’s thoughts on brittle diabetes are in part, “I think that because brittle has so many old-fashioned connotations that maybe doctors should start using another term for the “extreme” cases of Type 1. In most of my years with diabetes and as recently as ten years ago, all of my doctors called everyone with Type 1 brittle to distinguish them from Type 2’s. “Labile” was also a favorite term.”

I know that for the most part the medical establishment does not agree with the brittle diabetes label. However, I strongly believe that there is a physiological reason for the differences in control between my son’s diabetes and mine. My final take is that diabetes is much harder to control for some people than others.

The Saints We Call Our Family

Posted on August 19, 2013 by Sue from New York

This blog is dedicated to all the saints who are our husbands, wives, children, parents, siblings, and any other family members who live with us diabetics and look out for our well-being day in and day out.

Sue from Pennsylvania is a contributing blogger here. She has shared the work involved with trying to get her husband approved for a Dexcom CGM which he had been on for years until Medicare denied payment. She and her husband had a telephone hearing with an administrative law judge while in their endo’s office. They are anxiously awaiting the judge’s decision. She lives in daily fear that her husband, who suffers from hypoglycemia unawareness, will have an accident or otherwise get hurt. Sue has been contacting her senators, representatives, other Type 1 diabetics, Diabetes Forecast editors, as well as federal judges. She is even planning on sending a letter to President Obama. This advocacy has turned into a full time job for Sue; she is truly her husband’s earthly saint.

I am also an online friend of Mary who has both an adult son and daughter with Type 1 diabetes. Her son lives on his own, while her daughter who is mentally challenged requires almost constant supervision to control her diabetes. Mary has been a longtime member of the DOC, and has gained and shared much wisdom in the fine art of managing the day-to-day details of her daughter’s diabetes. Mary has been working on having her daughter live in an assisted living arrangement in her own home which she will share with two other mentally challenged women. Mary’s children are truly blessed to have her as their mother.

My husband has had to live with the stress of keeping both my son and me safe. My son has lived with Type 1 diabetes for 39 years, and I for 25 years. My husband has had to bring both of us out of comas when we went hypo during the night, as well as give us glucose during the day.

Last night while our son was visiting, he decided to return home. When he went to get his stuff, I noticed that his blood glucose meter was on the table and I told him not to forget it. He just stood there, so I told him to check his blood sugar. He got a reading of 38 mg/dl. My husband immediately got him a can of soda to drink.

After he drank the soda my son took off and got in his truck. He got his keys out and tried to start the truck. My husband pried the keys out of his hand. My son got another key and tried to put it in the ignition. At that point my husband ordered him to sit in the passenger seat and then drove him home. I followed in our car. My husband and I were still shaking on the ride back home.

My son uses a Medtronic pump and CGM. His CGM read 128 while his meter read 38 and it never gave him a warning that his blood sugar was dropping. It is my hope that I can convince him to begin using a Dexcom CGM which I feel is more reliable. My husband has been my and our son’s guardian angel all these years.

Who are the saints you call your family?

My Insurance Appeal for Dexcom Coverage

Posted on August 2, 2013 by Sue from New York

In January 2010 I started using the Dexcom Seven Plus Continuous Glucose Monitor (CGM). I had wanted to go on the FreeStyle Navigator CGM System because of its reputation for accuracy, but I went to the Syracuse Joslin Center to meet with the certified diabetes educator, she advised me to go on the Dexcom Seven Plus instead. I reluctantly agreed. Of course it turned out to be the right decision because not long after that Abbott stopped selling the Navigator in the U.S.

Anyone who uses the Dexcom knows what a life changer it is with controlling blood sugars. I used to have at least two severe overnight hypoglycemic episodes every month. I’ve only had one since going on the Dexcom. Yes, there are nights when my husband and I are woken repeatedly by Dexcom alerts for high or low blood sugar. However, that is a small price to pay to avoid waking up wet with sweat and seeing my husband sitting next to me with a concerned look on his face. What he went through to bring me to back to consciousness was much worse. I know that experience because our son also has Type 1 diabetes and I have been on the caregiver side of severe hypoglycemia.

A year after going on the Seven Plus, my personal diabetes manager (PDM) that controls the sensor went out of warranty. In February 2011 Dexcom sent me a new one. I had changed from one Blue Cross insurance plan to another during the year, and although my new company had been paying for the sensors, they sent me a letter of denial stating the following:

“According to Corporate Medical Policy and peer-reviewed literature, continuous glucose monitoring systems are medically appropriate for patients who are currently using an external insulin pump and, for patients over 18 years of age, diabetes is poorly controlled as evidenced by unexplained severe hypoglycemic episodes defined as an episode of low blood sugar resulting in a profound degree of cognitive dysfunction (e.g., stupor, seizure or unconsciousness) which requires external assistance for recovery. The medical records submitted by Dexcom do not indicate any of the above conditions. Therefore, these services are not medically necessary and are ineligible for coverage for DOS 2/15/11.”

I immediately called the insurance company and was told that I could appeal the decision. I composed a letter of appeal stating that both Dexcom and I had called to get authorization before the replacement PDM was shipped. Dexcom had sent them records of my blood sugars and my endocrinologist’s letter of medical necessity. When I had called, I was told that no pre-authorization was needed, just the letter of medical necessity. So we both thought we were good to go. In the letter, I detailed numerous episodes of severe hypoglycemia, one resulting in cuts after falling into a glass table (luckily it was safety glass), and sometimes needing assistance from medics or transport to the emergency room. I provided them with a copy of the bill from the hospital, as well as printed reports showing numerous blood sugar readings below 50 from my Dexcom and OmniPod pump. In my final paragraph, I stated:

“In consideration of the fact that I am using an external insulin pump, over 18 years of age, and I have poorly controlled diabetes as evidenced by unexplained severe hypoglycemic episodes resulting in a profound degree of cognitive dysfunction, I believe that the CGM provided by Dexcom is in fact medically necessary for the effective management of my blood sugars. In the event that I were to discontinue use of the Dexcom, I believe that I would resume having severe hypoglycemia episodes that would require outside assistance, i.e. a 911 call for assistance and/or emergency room hospitalization, and have higher A1C’s and increased variability in my blood sugar ranges.”

In June they reversed their decision and paid Dexcom.

I have since transitioned to the Dexcom G4 Platinum CGM and now enjoy increased accuracy and ease of use.

In two years I will be of Medicare age and I know that all the rules regarding continuous glucose monitors will be different. I am thankful for people like Sue from Pennsylvania who is assisting her Type 1 husband in appealing Medicare’s denial of payment with an administrative law judge. I pray that they and others will pave the way for Medicare to change their policy of nonpayment for CGM systems so that Type 1’s can continue to stay safe in their retirement years.

OmniPod’s New PDM

Posted on July 8, 2013 by Sue from New York

I had anxiously waited for several months to get my new OmniPod PDM and smaller pods. When they finally arrived I was very excited, but decided to finish using the old pods before starting the new ones. On the advice of a friend I did save one pod in case something happens to the new PDM, so I can use it with the old PDM before a new PDM replacement arrives.

I started using my new PDM and pods five days ago. During the setup, I was instructed to put in my ID Name, so I put in Sue. Now every time I turn on my PDM, including when I insert a test strip for a blood sugar check, I see this screen:

PDM ID:

Sue

Press “Confirm” if correct.

I wondered what could possibly be the reason for this extra step before using the PDM? Have there been people using the previous PDM who used someone else’s PDM by mistake? Shouldn’t they give us a way to shut this feature off if we so desire? My son, who also has type 1 diabetes, lived with us until 3 months ago. He uses the Medtronic pump, but if he used the OmniPod pump, we would have used different colored gel skins to differentiate them. That would have been easy enough to do, because I have four gel skins-two white, a lime green and my new black one that came with my new PDM.

Now I’m the only one in the house who has diabetes, so there is zero chance of someone else here wanting to inject insulin. So I decided to call Insulet Customer Support and ask if there was a way to turn this feature off. I was told that no, there is no way to turn it off (in other words, suck it up). I asked the reason for this feature, and was told that there are some families with more than one person with diabetes using the OmniPod PDM, and they added this feature to eliminate confusion. I guess it never occurred to them to tell those people to use different colored gel skins on their PDMs.

OK I’m trainable, and I’ll get used to this extra step, but it still seems silly to me. But on second thought, since this pump is not attached to the body like the conventional pumps, I suppose they are trying to eliminate any chance of being sued. I sure hope no one has already tried to sue them for this, because I do love the company and their new smaller pods and hope they continue to stay in business until there is a cure for diabetes, quirky PDM and all.

Stop the Guilt Already!

Posted on June 4, 2013 by Sue from New York

Please welcome Sue from New York who will be one of the writers for this blog. Today she is addressing a subject that we all know too much about. To learn more about Sue, click here.

My son was born in 1971, a beautiful, happy, healthy baby. His sister was born in 1974. In 1975, shortly after his fourth birthday, my son began to lose weight, wet the bed, and he developed an unquenchable thirst. We took him to the emergency room of the hospital late one night, and we were told that he was a juvenile onset diabetic. He was admitted, and we learned to give shots of insulin into an orange first, and then to our little boy. When we brought him home, my mother in law expressed guilt because as an adult onset diabetic, she felt she was responsible for her grandson’s diabetes. At that point my mother informed me that her cousin was a juvenile onset diabetic since the age of three. So I was then able to tell my mother in law that it was not her fault that my child was now diabetic, and I could now bear the blame. At one point I told myself that I wished it was me with the diabetes instead of him. I subsequently developed type 1 diabetes when he was 17.

Raising a diabetic child in the 1970’s and 1980’s was a real challenge. Blood sugar testing was nonexistent, and we checked his urine to see how his control was. He was on one shot of insulin a day. We mixed his NPH and regular insulin in the syringe in the morning, and he was on a fairly strict schedule of meals and snacks to coincide with the action of the insulin. We tried to explain to our young daughter why her brother couldn’t eat sugar, but something got lost in the translation. She had a recurring nightmare that her brother would eat sugar and explode. And she felt responsible for this nightmare, because she wasn’t watching her brother carefully enough.

There has been a theory that type 1 diabetes may be caused by mothers giving their babies milk before they are six months old. I’m pretty sure I put milk in his bottle before he was six months old. Oh great.

On July 2, 1999 my son was living and working in New York City, seeking work in the theatre, his passion. One day he stopped to buy a sandwich and was on his way to the subway, where he planned to eat the sandwich. He awoke in Bellevue Hospital with a broken left leg after suffering a hypoglycemic episode. He thinks he was hit by a taxi, but there were no witnesses available when the ambulance arrived. We drove 4 1/2 hours to the hospital, picked him up and brought him back to our home to recover. My husband took him to PT three times a week, and a couple of months later he had surgery again on his leg. When he recovered we returned him to his apartment in Queens. A couple of years later he developed proliferative retinopathy and needed laser surgery, which continues to this day. He had to give up his dream of acting and get a job with health insurance benefits to pay for his laser treatments. Within a month of his accident, my mother had a debilitating stroke which left her paralyzed on her right side. My son told me last week that he was responsible for her stroke because of the stress she suffered when he broke his leg. I did my best to inform him that a stroke is not caused by stress, but by high blood pressure and/or a blood clot. So he lived with guilt for 14 years that was not his doing.

Diabetes is a full time job. It’s not our fault that we developed diabetes. We need to learn to deal with the day to day existence of living with it, and let go of the guilt we associate with it.