Thursday, December 2, 2010

One Last Christmas - Matthew West Official Music Video

Wednesday, October 13, 2010

From Living the High Life to Surviving the Low the Life.

Well today it has been officially three weeks on the insulin pump; and I have had many scares since I started on the pump. The first scare was day one with hitting the tabs to stab myself in the gut for the first time. Think about it how many of you still even today hesitate when using a lancing device to stick your finger to take your BG? Now imagine that with a longer needle that jabs into your stomach or whatever area you are using as a site that day.


The next scare came from my supply company. Just five days into using the pump I realized the supplies I had were not going to make it through for a month. I called the supply company and they advised there was nothing they could do as my insurance would not allow more supplies than what I had already received. Here is the problem; most pump users change their sets once every three days. I however have never in my life claimed to be normal. My insulin to carb ratio was a 1:2 meaning I needed 1 unit of insulin for every 2 grams of carbohydrates. This is a very high ratio; my insulin to glucose ratio was 1:7 meaning 1 unit of insulin for every 7 points of Blood Glucose above my goal range. All of this was said for this reason; my body is so insulin resistant that my dose and bolus ratings were making me go through a tube of insulin per day. Each time a tube empty’s is a complete new set change from stick to fluid.

The wonderful ladies from Animas once again saved the day by providing me with enough extra supplies to get me through the rest of the month. They also held a meeting with my doctor to discuss my insulin consumption and what must be done to manage it better. My Doctor decided to place me on U500 insulin; this is 5 times stronger than normal U100 insulin. Now in the defense of Animas this is an off label use of the pump and they do not recommend this as a form of treatment. Doctors’ orders however are orders even when off label.

Before we could get me started on the new insulin my body decided it was time to make sure I understood who was in control. Wednesday October 6th I started having chest pains and Meredith took me to the St. Mary’s emergency room where they admitted to the telemetry wing of the Hospital and there I sat in a place I so did not want to be. All of my tests came back fine and I was released to go home on Thursday morning. It is interesting that I went into the hospital reasonably healthy and when I came home I spent the next 5 days sick with the flu.

Friday was the day I went on my new insulin and all I can say is wow that stuff is potent. My first insulin to carb ratio was 1:10 and my insulin to BG was now 1:35. I do great during the day I am averaging a nice 110 mg/dl (6.1 mmol/l) between 5 AM and 9 PM. The night time however is scary; I have had several lows over this last weekend during the night including a 51 mg/dl (2.83 mmol/l). Several adjustments later I survived my first night without a drop in blood glucose last night. When I went to bed I was at 101 mg/dl (5.61 mmol/l) and I woke up at 89 mg/dl (4.94 mmol/l) this morning.

Thanks to everyone for the feedback they sent me on what they know about Neuropathy. I am working on a post with information to really get behind the question “What is this thing called Neuropathy?” Have a great night!

Wednesday, October 6, 2010

Today is an Input day. Speak up everyone

Hello everyone, I have been thinking of writing for the last few days but could not settle on a subject. I know I have promised information on the pump system, however it does not feel right at this time. So I have decided to discuss what is currently on my mind. Today I answered a question on one of the sites I follow regarding Diabetic Peripheral Neuropathy (DPN). The site was asking how many of us suffer from DPN and if we discuss it with our doctor.


I can honestly say I do discuss it with my Doctor in fact I was just in his office yesterday letting him know the medicine is no longer covering the pain. I sit here today with my feet on fire and my arm tingling down to the fingertips. I am exhausted from the pain and yet I have no break. In less than an hour I will clock back into work and sit for four hours and listen to customers be upset over the issues while I try to sound like I am smiling and not admit I want to cry.

All of this aside I realized other than discussing my pain I have not asked if any of you know about Neuropathy. So today is a fill in day for you let me know what you understand about the disease that is Neuropathy.

Part of what I want to do is educate people on both the Diabetes and the Neuropathy. So please even if you do not have either condition let me know what you know about the subject. I want to see what direction we need to go to teach everyone what people with Neuropathy truly deal with.

Tuesday, September 28, 2010

What I have learned from Xbox 360 and Diabetes

     Ok I know you are sitting there reading todays title going huh? Truth be told this is more of my tongue in cheek humor that goes seriously wrong. A couple of weeks ago I introduced you all to what would be my new insulin management system the One Touch Ping ( http://www.animas.com/). This is both a glucose meter along with an insulin pump, the two work hand in hand to help me manage my diabetes. The day before that original post I had just purchased an old Xbox 360 game, but new to me, Assassins Creed. AC is of course about living the life of an Assassin; well this is where todays tongue in cheek joke comes into play. The name of the machine that plays a key role to the game is the Animus. Well that Friday I met the first member of my Animas team Addie, she came by to let me know the Doctor was placing me on the insulin pump provided by her company. Later that day I realized the closeness of the names when I was making my first kill in the game for the day.

     All joking aside Animas has been a dream team of people to work with in the management of my Diabetes. The ladies I have met and their natural caring ability about their patients I have found invaluable in the last three weeks. Addie has been a phone call away if I had a question that she was able to answer and when it came time for me to have more information that falls out of her range of expertise she informed me I would hear from another lady named Pam. Pam is a complete God send, I am sure through the many frantic calls the last week I have stressed her out completely but she has always dealt with me like some angelic being that has more patience than even Job conveyed.

     Meredith was laughing so hard at me last Wednesday (Sept. 22, 2010) as I was calling Pam to ask if I had permission to have lunch prior to my pump training because breakfast was at 6 am and this was now noon. There were so many things that had to be done prior to the actual training that I had not stopped to eat and I was not sure if I was supposed to. We had even stopped and purchased Subway already when I thought about this subject and had to call her. I believe Pam even had to laugh at this but I was nervous. I had been looking towards this day for 2 weeks with hopes that this was the first step to having my blood sugars under control; not being able to go through the first insertion of the pump system because I ate lunch would have killed me. Poor Pam yesterday had to get another frantic call from me once I found out there were problems with insurance and my ability to get enough of the insets that I need for my daily changes. My insurance covers only 15 changes per month or once every other day and due to my level of insulin resistance I am changing them on a daily basis. Pam calmed my nerves and let me know that she was having Addie drop off enough supplies to my Doctors office today so that I would make it through the month. We would figure out what needs to be done and evaluate my settings.

     Cathy is the newest member to my Animas team with being my actual managing nurse. She contacts me daily and evaluates my current pump data along with advising of any setting changes we need to do based on my blood sugars. We have already made the first adjustment lowering my basal rate over night.

     So you ask what I learned from diabetes and Xbox outside of similar names. I learned that while I am an Assassin on the Xbox working inside the Animus killing individuals in a silent solo stealth, here in the real world I am not on my own. My Animas team is here and their goal is to save my life through healthier living and better control over my diabetes through the use of their pump system.

     I am going to end here for tonight but this is really a two part post as tomorrow I will provide more information on the pump system itself and how it has taken the pieces of my life and started placing them back together. Remember please follow my blog and if you have any questions or comments please leave them. I would be more than happy to try and answer any question and I am always interested in your comments.

Monday, September 20, 2010

Time for an Educational Post!

DANGER! DANGER! The following paper may be hazerdous to your health. Please read with caution!!

Ok all kidding aside the article below is one that I wrote for one of my classes earlier this year. Please enjoy and let me know what you think. I will Apologize in advance for the length of todays post.

Healthy Eating and Diabetes


Did you know that Diabetes was the Seventh leading cause of death in the United States in 2006? (National Diabetes Information Clearinghouse, June) This is a startling statistic when you consider for those patients diagnosed with Type 2 Diabetes it is possible to avoid complications if not “cure” themselves of the disease. Through healthy eating and weight loss it is possible to lower blood sugar, lower the amount of insulin being taken, and reduce the effects of type 2 Diabetes on the human body.

The first area to look at for a diabetic is how healthy eating can lower blood sugar; this is done by reducing the amount of carbohydrates and increasing the amounts of protein an individual can eat. When reducing carbohydrates it is important to understand how they affect a Diabetic. Carbohydrates are digested by the human body and converted into glucose a form of sugar the body needs for energy. “Glucose is largely responsible for the food-induced increase in blood glucose concentration”(Gannon & Nuttall, 2006). Since carbohydrates are so directly involved in the glucose level of human blood then a reduction in the amount taken will also help
reduce the glucose levels in the body. Through the study done by Nuttall & Gannon they found “substitution of sugars for starches considerably reduced the meal-related increase in plasma glucose over a 24-hour period“(Gannon & Nuttall, 2006). By reducing one item of the diet, carbohydrates, it is a must to increase another area of the diet.

Increasing Protein intake helps to lower the overall effect of the blood sugar on the human body. First it is important to understand how the Protein affects the body. “Protein acts synergistically with ingested glucose to increase insulin secretion and reduce the blood glucose response to the ingested glucose in people with type 2 diabetes.” (Gannon & Nuttall, 2006) The power that protein has is the ability to increase the secretion of the insulin, this is important because insulin is what the body requires to turn glucose into useable energy. Proteins ability to increase the amount of insulin secreted in people with type 2 diabetes helps to lower the blood sugar as the insulin is able to help the cells process the glucose. Healthy eating is an important and vital area in Diabetes management; another area that effects type 2 diabetics is weight loss.

Weight loss has been proven to benefit type 2 diabetics by reducing the amount of medications they have to take. “We know it's true -- that if someone with diabetes loses 5% to 10% of their weight, they will significantly reduce their blood sugar." (Davis, 2007) Each type of exercise used to help in weight loss affects the body’s blood glucose level differently; with this being said it is important to monitor blood glucose levels at all times. “When doing aerobic exercise can lower glucose levels almost immediately.” (Davis, 2007) "With physical activity, you burn blood sugar as well as sugar stored in muscle and in the liver," explains Meneghini. "People using insulin or medications to simulate release of insulin should closely monitor blood sugar levels when they begin exercising more. Over time, as you exercise regularly, you can reduce doses of medications and insulin." (Davis, 2007)

Insulin is made in the pancreas of the human body. In a type 2 Diabetic their body still produces insulin however the receptor cells in the body have what is called insulin resistance. Meaning for some reason they are unable to accept the insulin which is what allows the sugar in the blood stream to be absorbed and used by the cells for energy. Through a healthy diet and exercise a Type 2 Diabetic can reduce weight which has been shown to aid in the reception of insulin at the receptor cells. The importance of healthy eating and weight loss for a Diabetic can also be seen in the complications that can occur.

Uncontrolled diabetes has many major complications, for the purpose of this paper Retinopathy and Neuropathy shall be focused on. “Diabetic Neuropathy is damage to the individual’s nerves that may lead to pain, numbness, tingling, and burning sensations.” (MedicineNet.com, 11/4) Blood glucose levels that are higher than normal for too long will cause this type of nerve damage. Through healthy eating and weight loss a type 2 diabetic will be able to get their blood glucose levels under control. “Diabetic peripheral neuropathy will become less when blood sugar is under control. Medications can be taken to help control the discomfort if needed“ (MedicineNet.com, 11/4).

Neuropathy is a serious condition in a diabetic as the pain related to this disease can be extreme. There are four versions of Diabetic Neuropathy, each effects different areas of the human body. These include Peripheral Neuropathy, Autonomic Neuropathy, Proximal Neuropathy, and Focal Neuropathy. Peripheral Neuropathy most commonly involves the feet and legs of a diabetic; symptoms of this range from tingling to burning, and from extreme pain to complete numbness. Peripheral Neuropathy can, if not treated properly, lead to amputation of the
extremities. With Autonomic Neuropathy the nerve damage can affect several major organ systems in the body. These systems range from the digestive to the cardiac, and the urinary system. These can all be life threatening as these systems are some of the core functions in the human body. In Proximal Neuropathy the Diabetic can feel pain or weakness in the thighs, hips or buttocks. Focal Neuropathy involves muscle weakness or pain in the head,
torso, or leg. These are all serious issues but one area that is yet to be discussed is Diabetic Retinopathy.

“Diabetic retinopathy is the most common diabetic eye disease and a leading cause of blindness in American adults. It is caused by changes in the blood vessels of the retina.” (National Eye Institute, 2010) All diabetics are at risk for Retinopathy and need to take control of diabetes in order to help avoid this complication. “To prevent progression of diabetic retinopathy, people with diabetes should control their levels of blood sugar, blood pressure, and blood cholesterol.” (National Eye Institute, 2010) There are many case studies into retinopathy and the connection with neuropathy going on at this time.
The retina in the human eye is neural tissue, making it part of the nervous system also. As has already been stated Neuropathy is nerve damage and Retinopathy is damage to blood vessels of the retina. They are currently pursuing research into if existing nerve damage is helping to lead to the changes in the blood vessels causing the legions in the eyes that ultimately cause blindness due to Retinopathy. A diabetic who does all they can do to control their blood sugar through the use of healthy eating and weight loss can help prevent these very dangerous diseases.

It is disturbing that a disease that can be reversed such as type 2 Diabetes has to be among the top 10 leading causes of death in the United States. I personally am a Type 1 Diabetic and therefore I am not reversible. I also suffer from Diabetic Neuropathy in my arms and my legs; this is why I feel it is important to educate those who can take control of their disease. Through healthy eating and weight loss it is possible to lower blood sugar, lower the amount of insulin being taken, and reduce the effects of type 2 Diabetes on the human body.



References

Davis, J. L. (2007). Diabetes and Weight Loss: Finding the Right Path. Retrieved from http://diabetes.webmd.com/features/diabetes-weight-loss-finding-the-right-path

Gannon, M. C., & Nuttall, F. Q. (2006). Control of blood glucose in type 2 diabetes without weight loss by modification of diet composition. Retrieved from http://www.nutritionandmetabolism.com/content/3/1/16

MedicineNet.com. (11/4/2009). Diabetic Neuropathy: Symptoms, Treatment & More. Retrieved from http://www.medicinenet.com/diabetic_neuropathy/article.htm

National Diabetes Information Clearinghouse. (June 2008). National Diabetes Statistics, 2007. Retrieved from http://diabetes.niddk.nih.gov/dm/pubs/statistics/#deaths

National Eye Institute. (2010). Facts About Diabetic Retinopathy. Retrieved from http://www.nei.nih.gov/health/diabetic/retinopathy.asp

Monday, September 13, 2010

Lessons of Humiliation learned

It is now Monday September 13, 2010 and I am about 4 days from my insulin pump. Things are looking really bright for me towards the end of the week; however the last four days have been horrible. I have tried as hard as I can to be positive about my Diabetes and about the Neuropathy because I know I can deal with them and I can learn from them. This weekend my positive attitude failed me, I got depressed and it carried right over into today. I have not had a blood sugar lower than 310 mg/dl (17.22 mmol/l), and the struggle of staying awake due to the high blood sugars has been extremely hard. The Diabetes has been the minor player this weekend however, the Neuropathy decided it was time to rear its ugly head and just prove to me how much control it does have even if I am fighting it.


The pain started on Friday and felt like a minor irritation and then started building. Saturday my legs and hands were on fire. I honestly thought I was cooking from the inside out, I mean the heat was extreme. Thankfully by Saturday night it had subsided and I thought I had made it through. Oh no, such a mistake to make because the Neuropathy was nowhere near done with me. Through the night Saturday night I had some minor electrical glitches going on with in the nerve endings. Sunday was a different story, the minor glitches became ultimate shocks of electrical pain running throughout my body to the point I believed I could run a light bulb without the lamp. Ok yes that is an exaggeration I will admit but trust me if it was possible then I could have done it.

I was miserable and it got worse, Sunday night we had a family night. We watched Hannah Montana with the kids then Extreme Makeover Muppet Edition. During EM I started to get up off the sofa and was unable to. My right leg was numb from the knee down to the foot. Anyone able to guess what happened next? Yep, you are correct I landed on the floor unable to stand, in front of my children and my wife. I felt like an idiot because I could not stand up. The Neuropathy had proved to me that it can ruin my life when and if it wants to. I would rather have 20 people point and stare at me in a store when the twitches happen than fall in front of my family.

My children know what I have and they understand it, but I still try to hide the larger effects of the disease from them. They do not need to see their father at his weakest. I was so humiliated with this incident that when I was able to get up off the floor I went to a different room and really cried. Yes that is right I am an American male admitting that I cried.

Today was my physical therapy day and my occupational therapy day. During my PT session nothing would work correctly, my muscles were so sore from the weekend of hell that everything we did caused a muscle to cramp. It got to the point that the session was canceled early as they really cannot do anything to help when my body is saying no. During my OT session my blood pressure went up causing me to feel dizzy and really unable to focus.

So I am now sitting here pain free but extremely tired, I am drugged up to the extreme to kill the pains so I am sort of foggy about things. I am slightly depressed about feeling helpless this last weekend but I have a bright prospective that what may be my medical savior is now only 4 days away as long as the plan stays on schedule.

For tonight I am going to log off as I am just not here completely but I hope you all have a great night.

Wednesday, September 8, 2010

Living life by the train and the plane

I feel a lot like a Zephyr here lately. The last few weeks have been a blur as life has been flying by faster than I can keep up. My Neuropathy has kept its little ugly head in hiding for the most part, but it has a few lingering reminders that it is here. I am waiting not eagerly but expectantly for the day it decides to jump back into my life and scream I AM HERE!!!!!

For the most part the Gabapentin is doing its job well, however I know the day is coming the current dose will no longer be good enough and the pain will start to come back. I have started taking PT (Physical Therapy) and OT (Occupational Therapy) to help rebuild the muscles in my arms and legs. I am still fighting this diagnosis and I will not let it beat me. My PT representative today had my legs stretched in so many different positions that I swear I saw my toes dangling in front on my eyes from behind my head. Only one word describes the stretches they had me do today….”Ouch.”

Last Thursday I met with my new Doctor. Mark is an internist and specializes with Diabetes. My insurance made me transfer to him as my new primary care physician. I have a lot to learn about him and he about me but we seem to have hit it off. I told him “insulin no longer works on me” he said “I’ll take blood and let it prove you right or wrong.” The blood test was done in several segments last Thursday with a base line fasting blood sugar then afterwards with a blood sugar after lunch and dinner. He told me I would hear from him in a couple of weeks and scheduled my appointment for 3 weeks out. To my surprise Friday comes with a phone call from Animas representative Addie. She is the Territory Manager for Animas and works with my Doctor to prepare people with the Insulin pump. Yep that is right you heard it here I will soon be a pumper instead of just a plumper lol

http://www.animascorp.com/ gives a nice overview of my new Insulin pump along with the One Touch Ping. My little blood sugar monitor that communicates with the pump to help figure bolus doses of insulin along with monitoring my basil dose. I am looking forward to the arrival of the pump as I may finally see the end of the sky rocket grab your boots and hold on tight blood sugars. Was called today by the company who will be sending me all of my supplies, they are ordering all of the necessary pieces so that I may start on the pump soon. To my understanding the soon means by 9/17/10; talk about fast last I heard it was going to take a couple months then boom the Zephyr roars through my life spinning me in circles and now it is next week. I don’t know everyone I am leaning towards the black one although I can pick anyone of the colors available. Pink is probably not anywhere near the top of my choice list, no this does not mean I am scared to wear anything pink, I have a pink shirt that I hold up rather well. I just don’t feel the pink is it lol however if you have any other suggestions get them in now as I have to pick by Tuesday so that it is in by Friday next week.

This weekend is the annual Stearman Fly-in here in Galesburg, Il. I plan to be near the airport on Saturday relaxing with my wife and kids watching the Air show above us. It is funny though as fast as my life is moving right now it will take Air planes to slow it down and breathe, rather fitting.

Tuesday, August 31, 2010

Life in the busy lane

How is everyone doing? I do apologize to everyone as I have been a little absent for the last two weeks from the writing. This is due to my wife’s birthday, my nieces birthday and a class at school that is about to make me lose the remaining hair I have lol.

Over the last two weeks I have been getting used to a new blood sugar monitoring device that was prescribed for me because I am um a tech geek (runs back into the closet he just came out of). My new meter is the Bayer Contour USB; to view the Contour USB please follow this link.

http://www.bayercontourusb.us/

What do I think about this instrument of pure geek-ness? I am absolutely in love with this monitor; the features on it and the software you can download to your computer from Bayer to work with it make the $60 (US Dollars) investment well worth it. Unfortunately for me the monitor is to new for the American market and my insurance would not cover it, this however was the only downside. The test strips required along with the lancets for the lancing device are the same as all other Bayer Contour devices so these thankfully are fully covered.

Through the tests over the last couple of weeks I have confirmed in a chart setting what I already knew from my own mental recording of blood sugars. That is my life on insulin is a Roller Coaster and there is a sadistic person in control, wait no I am not. It seems the harder I have tried to keep my sugar down the last few weeks the higher it has gone, now here is where it gets funny. On my wife’s birthday I gave in and had marbled cake with chocolate chip ice cream. We have discussed this in the past marbled equals Chocolate and do I really have to explain the ice cream? Well I take my wonderful blood sugar that night 2 hours post chocolate city and what do I find? I will tell you I was at 78 mg/dl (4.3 mmol/l)!!! I was shaking across the room; Meredith could not get me to stand long enough to get Orange Juice into me because I started half dozing/ half passing out. This was AFTER the chocolate.

Well that is just a single day example of the last two weeks of sugars. Just this last Monday I started out at 105 mg/dl (5.83 mmol/l) at 6 AM. Was at 297 mg/dl (16.5 mmol/l) at 10 AM and then was 156 (8.6) just two short hours later at noon. Now take in mind other than my morning shots I had taken no other insulin. From there I continued to bottom out till I was back down to 78 mg/dl (4.3 mmol/l) that night.

My Neuropathy has been affecting me only to a minimum the last two weeks. There are new issues that I will discuss with you all later this week. As for now I am going to bed because 3 AM tomorrow comes awful early and I need some resemblance of sleep. This does close out the month of August for us all, I hope everyone had a great August and that you look forward to a wonderful September as the trees start to change their colors and autumn settles in at least to my neck of the woods here in Illinois.

Wednesday, August 18, 2010

Waterpark and Chocolate Donuts

It never seems to fail that my constant companion will rear its head just when I would like it to stay hidden to the rest of the world. Today was no exception to its wonderful timing, today was a family vacation day that has been planned all summer and put off a few times and finally gelled together. I was supposed to work today because it was too late to request the day off and no one would take the hours I was trying to give away. So I took a personal day and went with my family on this vacation day. We drove an hour to Burlington Iowa to the Fun City Waterpark and just enjoyed the day, my wife and kids, my parents, and my sister and her kids and boyfriend. Sat in the lazy river being well lazy lol for oh I do not know how long but it felt so good. Swam in the pool and enjoyed a nice long hot tub sit with my wife and kids just relaxing and felt at peace.

Here is where our wonderful cohort in life decided to come into play, I knew we were getting close to lunch time but had no real clock on me to see what time it was. Unfortunately, as most diabetics know you must try to eat on schedule. I missed my normal lunch time by an hour, by the time we went out to the vehicle to eat lunch I was shaking and not focusing so well, a quick blood sugar test revealed I was at a wonderful 78 mg/dl (4.3 mmol/l). Well I ate a quick bologna and cheese sandwich followed by a chocolate donut. Ok yes I know the donut was not on the recommended food list but 1) it was sugar that I had immediate access to and 2) it was CHOCOLATE! Wow, that sounded like my wife typing there but nope it is me I like Chocolate and do not eat a lot of it.

It was almost an hour before I went back into the waterpark to join everyone as I did not want to be shaking in front of everyone. Once inside it was back to the pool and the hot tub then the lazy river again ohhh and the Atomic Drop waterslide. I raced my sister’s boyfriend down the slide; ha, like he even stood a chance of beating me down that thing. I am by no means a small man and when you allow me to go on a water slide that drops you over 90 feet straight down then into a pool you have no chance of keeping up with me; gravity pulls me three times faster than a smaller man lol.

Ok all the fun aside once we arrived home this evening I took my blood sugar again prior to dinner and shots for the evening. I was now at 199 mg/dl (11.05 mmol/l). I was actually surprised by this as the donut should have shot me through the proverbial roof for the day. I felt good about this level as I expected it to be much higher, is it a good level? No not really but these days I take what I can get when most of the time I am hypo and shaking around everyone.

So for all of you out there with Diabetes as a life partner how do you handle vacation trips? Do you find a spoiler like I did (even if its spoiling was short lived) or do you make it through the day with no issues by better planning? Looking forward to hearing your comments on this one for now everyone sleep tight, hug your loved ones tell them you love them and enjoy life day to day.

Saturday, August 14, 2010

Demarco The Strong

Wow, this week has had its special highs and lows for me but I tell you what, last night I read something posted by a member of the Diabetics with Neuropathy group I host on facebook. The article was from a lady named Kate Hannant about her son Demarco. Demarco is a Type 1 brittle Diabetic with Peripheral Neuropathy. Kate uses a few terms that are familiar to those of us with in the Diabetic community however since I know from messages I have received that not all who read my blog are Diabetic, I am including the breakdown of the two terms for you. Everyone I know how Demarco feels the pain is intense I have days I cry as an adult because of the pain I go through form Diabetic Peripheral Neuropathy. Demarco is 9 years old and started dealing with this 2 years ago when he was 7 he has my prayers always and my respect for holding up and learning to be stronger than his pain.
Endo = endocrinologist (Diabetic Specialist Doctor)
GP = General Practitioner

Demarco's Story. (My 9 year old warrior.)

Kate Hannant: Hi everyone... I thought that I may as well just come out and tell you all on this page about our journey over the past 2 years.
Demarco has always had terribly brittle diabetes. The stress involved in the early days got the better of my marriage. Demarco is my only child, and before the diagnosis, I had a world full of incredible opportunities. Suddenly, I found myself as a single parent, and dealing with baffled specialists, who had never seen a child so sensitive to insulin. We soldiered on, and anyone who knows Demarco knows that he is a delightful child.
In 2008, his endo said, "Let's get Demarco on a pump-it can only help." Within a month, it was organised. A few hours after he got hooked up, I could already see a difference in him. It wasn't until a week later, when he smiled and said to me, "Mum, I feel so much better! I have so much energy!" that I knew how amazing the pump was for him.

Then, In September, 2008, after a beautiful Spring day, I found him with his feet up against the fan. He said it felt like there was lava flowing through his feet. Then the next night. I googled "type 1 diabetes burning feet" and my heart sank. The next day I wrote the words "peripheral neuropathy" down on a piece of paper and took him to our GP. The GP looked at me and shook his head. He assured me there was NO WAY that Demarco could have nerve damage. However, I was insisted that tests be run, and he had a nerve conduction study that weekend. It came back normal.

Now, the burning had progressed to stabbing, pins and needles that would last for 2 hours, numbness, "cement" like sensation, and general pain that no simple analgesics (panadol, neurofen) would touch.

One night, just before midnight, I saw Demarco at my bedroom door. He was on his hands and knees, begging me to take him to the hospital. He was in agony, and he couldn't stand. I called the ambulance, and he was rushed to the ER. A registrar was very concerned by Demarco's symptoms. and wrote an emergency referral to the Hospital Paediatrician.

This doctor gave my Demarco a very thorough examination. My parenting was questioned..(Demarco and I have a very close relationship)-Paed wondered if Demarco was acting out in an attempt to seek more attention. I knew that wasn't the case, and I demanded that further testing be done. He handed me a referral for a child psychologist.

Then we saw our endo. I thought that for sure he would be the one person to act quickly. Imagine my dismay when he said, "Let's wait 9 months to see if this pain disappears. Otherwise we have to order a whole lot of tests that will end up finding nothing." I was devastated. I had known this man for six years-he had diagnosed my son. In the meantime, Demarco was in pain 24/7. He couldn't walk without pain. He couldn't even stand to put shoes on. The pain spread to his back, neck, ribs. He used to beg me to cut off his feet. Still, no one seemed half as worried as I was.

I began researching independently. I found that there was a phenomenon that occurred when unstable blood sugar levels were suddenly corrected. Instead of feeling better, people have reported untreatable pain. All of the symptoms added up. I began writing to authors of papers, asking them their opinions. Soon, I had a little network of the world's leading paediatric diabetes specialists emailing each other, asking for each others' opinions. None of them had ever seen the symptoms of Painful Diabetic Neuropathy before in a child so young.

I found a book written by a Professor in Sydney. I wrote to him, and begged him to see Demarco. It took months for him to reply, in the meantime, I was looking at catalogues for mobility scooters and wheelchairs for Demarco. His was wearing morphine patches, and the pain STILL persisted. I would have done ANYTHING to have the pain transferred over to me. I wrote to a Professor at Sydney Children's Hospital, who was curious and interested enough to ask us to come straight away for an appointment. He wondered if Demarco had Post Traumatic Stress Syndrome, because of his severe hypoglycemic events as a younger boy. Eventually, I took Demarco to a child psychologist to help him learn strategies to distract himself from the pain. After 3 visits, the psychologist said to me, "Kate, he is really suffering. It's real, it's not a psychological problem. It's real." I sat outside his surgery screaming my lungs out.

In the meantime, the best Professor of Paediatric Neurology finally contacted me. He said that we could come to Westmead Children's Hospital and have every test ordered by the Diabetes Complications Services Unit. We had to wait TWO agonising months. On Christmas Day, 2009, my son, pale and weak lay on the sofa, not even able to open his presents. He tried his hardest to be happy, but he was in sheer agony, and totally bombed out on morphine.

Finally, we went to Sydney for our appointments. Thermal Temperature and Vibration studies were conducted on Demarco by a Professor in Diabetes Complications. He failed them abysmally. They got us back the next day to repeat them. Again, finally, there lay the evidence that showed that Demarco indeed had nerve damage in his feet. After seeing 14 specialists in Endocrinology, Paediatrics, Psychology, Pain Psychiatry..we had an answer. I asked her whether she thought that Demarco may have had the Painful Diabetic Neuropathy, and she agreed with me.

The chance of this happening to a child is so remote..I can't even offer up statistics. However, this condition is quite common in people with diabetes with eating disorders who are in recovery-people who had terrible control, who suddenly got their numbers in range again. Doctors from the Mayo Clinic in the USA contacted me and told me to remain hopeful that Demarco may have some remission from the pain, and that often, things improve in other cases.
Today, Demarco is still on pain medication, and he can now wear shoes. He can sleep a whole night without pain affecting him-it's only the hypos that interrupt his nights now. He still has pain, but he is so mentally tough that he works his way through it. We have endured two years of sheer hell together, without the support of the medial profession. I have had doctors suggest I had OCD, that I was doctor shopping for narcotic medication, that Demarco was feigning symptoms because he had a psychological disorder..many, hurtful accusations, much dismissal, constant doubt. My message is-Dont put all your faith in the words of doctors. Especially where type 1 diabetes is concerned..parents are the best doctors for THEIR child. You know your particular situation-doctors know a textbook situation. I am almost finished a book about our experiences, and I feel confident about sharing our story with the world. I still have my precious boy, he has escaped from this nightmare relatively unscathed. He has a profound fear of seeing doctors, but that's only to be expected, really. Never stop fighting for your child. Ever, ever, ever. You can't expect your doctor, your endo, your diabetes team to take full control and fix a situation..listen to that incredible gut instinct we all have. Thanks for reading, and thank you to everyone for your support. It has helped more than you know.

Wednesday, August 11, 2010

Picking up the pieces

Wow ok last week was somewhat of a long post but I feel it started a needed vent for me. As I was closing out the post I started into the feeling pathetic part of my week; I feel this is a great place to pick up and carry on from.

As I stated I sat in the waiting room coming to my senses feeling pathetic, I mean here is a guy who has been diabetic for more than half of his life and he still cannot get the balancing act of blood sugar to work for him. How do people do it? I mean is there some sort of “I Win” button for Diabetes management? I am more aware of the medical waiting room now and I can see four or five people staring at me while two nurses are making sure I have not drifted off to never never land while at the office. Is this the first time I have had a reaction in public, no and I am afraid it will not be the last. I was in a K-Mart and was experiencing pain from my Neuropathy just last week. As we walked through the aisles of the store the pain would hit and it was not just a simple amount of pain it was 15 to 20 spots on my body from my feet to my head getting hit by what felt like a million needles at once. What do I do I jump or jerk uncontrollably when the pain hits as it was horrible. What do I hear, I hear a lady tell her son honey stay over here that man is strange. STRANGE!!!!!!!!!!!!!!!! Thanks lady now not only do I feel pathetic for having issues I cannot control I get to be strange to you are your son because the pain shot through my body like a jet racing across the sky.

The problem with feelings like this are they are a glimpse of the insecurity a Diabetic carries with them, now please do not get me wrong not everyone carries the feelings around daily, but they have had them at least once in their life. I have a friend who says her emotions with this disease are almost more of a rollercoaster ride than the disease itself. Alas we cannot allow our feelings of insecurity run our lives, just the same as we cannot allow the disease to run it. We all have bad days and they will never go away, but take these days and these feelings and use them to your advantage. Did the event at the doctor or in K-mart stop me from living a full day those days? No, I continued to push myself through the day no matter how I felt. I enjoyed the time in K-mart buying things for my family no matter the pain or what some lady said. Enjoyed it even more that it was my father in laws money my wife was spending and not ours lol.

I am going to end here tonight and leave you with one thought. Even through the pain in your life did you make anyone else smile today?

Thursday, August 5, 2010

Did someone ask for a train wreck?

What a week it has been since my last ramble to everyone. My blood sugar has gone so far out of control that I have been scared out of my mind. I wrote last week about the sky rocket I had over 600 mg/dl (33.33 mmol/l) well the rocket had to crash and boy did it ever crash. In the last 6 days I have hit the bottom of our stability level over four times. What I mean by this is on four occasions I had my blood sugar drop to a wonderful 72 mg/dl (4 mmol/l). Let me tell you those are scary times when your body starts to shake uncontrollably as the sugar plummets and you feel like death is knocking on your door saying “Why Hello John, are you ready to come see me today?”

Hypoglycemia is a scary event for a Diabetic. The symptoms range from trembling and palpitations to hunger and irritability. These are just the early warning signs if the brain starts to get deprived of sugar they get a lot worse. These range from difficulty thinking and confusion to seizures coma and even death. How does that sound? Is it sufficient enough to get your attention tonight? This is the never ending battle of a Diabetic, balancing the amount of Insulin we take to keep our blood sugar in the “normal” ranges and yet avoid taking a cliff dive to our last breath. This all comes into play with me because I am what they call a “Brittle” Diabetic, meaning that my body is no longer properly accepting the insulin I am providing it. I have blood sugar swings that are massive and unpredictable even on the insulin.

Well after last week when Meredith and the kids were in Chicago visiting her father, I found out that it is not really safe for me to be home alone. Ha! I am 33 years old and cannot be trusted to be home by myself lol this is a sad thought. After passing out due to the high blood sugar I bottomed out several times also. Sunday night I had called for Meredith, they were home at this point, because I did not feel right and needed some help due to lack of focus at this point. We learned a valuable lesson this night as Meredith said she would be there in a minute due to working on some laundry, well when she got in the room I was half passed out convulsing in the chair. She very quickly found my emergency glucose tablets I have in the house and got me awake enough to take one. As it started working and I was becoming more aware she had prepared a Peanut Butter sandwich to try and get me some carbohydrates for sustainable sugar in my blood.

On Monday I went to see my Neurologist for a check up on my Neuropathy and he has changed the dosage of my Neurontin and wants me to see another Doctor who can assist in my Diabetes planning and control in more of an expert opinion than my current PCP (Primary Care Physician). Well I went to go speak with the new Doctor and was advised that he could accept me as a new patient but I would have to fully leave my current PCP. Can we say instastress? I mean my current PCP has been in that role as long as I can remember ever having a Doctor. He has always taken care of me and my parents and now my wife and children. I have to leave a PCP that feels like family to me, cause he has literally watched me grow. Well needless to say my glucose decided that it did not want to play the stress game and as I was talking to the nurse my speech started to slurr and my thoughts started to jumble and my sugar took a nose dive off the cliff once again. Thank God I was in a Medical Clinic and they had Orange Juice available, I came to a realization while I was coming to my senses lol my realization was that I felt pathetic.

I apologize to everyone for the length of today’s posting. I have a lot more to say and I want to explore the feelings a little more as they are a very important part of a Diabetics life as we must always live with our disease through the good times and bad. For a type 1 diabetic it is a marriage with no chance of Divorce, or maybe a Life sentence in Prison. We will get into some of those thoughts and a continuation of the week review tomorrow, for tonight I wish you all a great night’s sleep and a wonderful Friday morning ahead of you.

Tuesday, July 27, 2010

The Plane has Crashed

You know I had this whole thought process of what I was going to write about today all planned out; we were going to discuss monitoring devices. Then today happened and I do not say that in a good tone. The day started out wonderful I had my lowest morning blood sugar in weeks with an amazing 110 mg/dl (6.1 mmol/l) woot, normal range. Now this is the way to wake up full of energy and ready for anything. I worked through my first 4 hours of work today with a little bit of pain but my left arm pretty much numb, I am used to this so I dealt with it. Got through with work and went to my optician for my annual eye exam today.

In the eye exam they did a new test that I had never before seen, I had to look into a machine and hit a button whenever I saw three flashing lines. This test was for one eye at a time, now the hard part or maybe the weird part happened during the test. The eye that was not being used seemed to almost cross with the eye being used causing my vision to go completely black. I could see pretty much nothing except for what seemed to be the fluid in my eye, sorry no other way to explain this. This little issue happened on both eyes whichever one was being tested seemed to be overridden by the non-testing eye. After this I had a normal eye exam and a pupil dilation to check on my inner eye. I still have minimal scar tissue at the back of my eye which according to them is early signs of Retinopathy but they do not believe any action is required as it has not grown any in four years of testing.

After the eye exam and all I came home to start feeling extremely tired. I checked my blood sugar and I was at 396 mg/dl (22 mmol/l) and all I could think was what the heck???? I took a slider shot of my Humalog to try and bring the sugar level down, I do not believe this worked or maybe it did that was really the last thing I remember. I was out on the sofa after that for almost 4 hours. I woe top Misty (my cat) liking my hand and my phone ringing it was my Mother. I took my blood sugar again and was at 386 mg/dl (21.4 mmol/l).

So after this I spent 3 hours in the ER for them to do blood tests to find out if I have an infection or something. I am supposed to follow up with my doctor tomorrow afternoon. They cannot explain what is causing the spike in my blood sugar. I sit here writing this at 11:52 pm tonight and I am still at 307 mg/dl (17.05 mmol/l) while this is down, this is not a major improvement. To be painfully honest with everyone I am scared to go to sleep tonight because I am unsure what is going on. This is just one of those days that do not go your way.

I hope to talk to you all tomorrow about my new monitor that I should be getting after 11 am tomorrow. This will depend a lot on what my wonderful life partner decides to do to me tomorrow lol. Till then have a great day everyone, we are half way through the week tomorrow so enjoy it.

Monday, July 26, 2010

Concessions and Revelations

Today was an interesting day; I made it through a complete day of work without too much pain. I had to talk with my human resources representative to set up a new break schedule to accommodate my current needs with pain management. I work for a company taking technical support phone calls. Well this requires me to sit for 2 hours at a time and by the time my first break arrives I am in pain. So thanks to my new friend called Neuropathy I have had to get a medical exemption for work allowing me to take smaller breaks so that I may get up and move around.

I would love to say this is the first time my job has had to make a concession to accommodate me with my medical issues; unfortunately it is not the first and at the rate of growth I am experiencing with my new found friend I fear it will not be the last. They already allowed me to come home so that I could work from my house handling our calls. This became an issue when the ability to drive safely came into question; having 5 near accidents in one month on an interstate is never good. I was driving 43 miles one way to and from work every day so I came home. I do my job and I do it to the best of my abilities. I am not meeting goals now as I have to take longer time to work on files, and I fear this is an area that exceptions will not be made in and I fear losing my job eventually over this. My doctor, my wife, my parents and my friends all think I should apply for disability, but I do not want to give in to a disease. I am not going to allow the Neuropathy define me, I will define the Neuropathy!

I have wondered if I chose the right background for my blog page as my wife did tell me it seems to dark. After reviewing my choice I have decided it is fine. This background was the best way I could express my pain in a visual format. The dry parched land represents my life broken up by the Diabetes being attacked by Neuropathy in the form of the lightening. Leave me a message telling me what you think of the background is it to dark or does it explain things to you?

Sunday, July 25, 2010

Structure

Today has made me realize one very important thing, I like structure. Not just a day to day idea of what is going on when but structure as a whole in my life. I know I get up in the morning through the week and get ready for work after taking my morning blood sugar. When I come downstairs Meredith has pulled the shots including my slider and has my pills waiting for me; weekends I cook breakfast and she does the same thing sets up pills and shots. Today however, Meredith and the kids left on their own vacation for the week up to visit her father before summer is over and school begins. I cannot go as he does not have internet at his home, if he did I could just take my job with me. So tonight I fixed dinner for one instead of five and took my blood sugar as normal. I ate dinner and then some 4 hours later remembered I forgot my shots and pills for dinner, my routine was out of whack.

So does structure equal routine no not always. In my particular case structure is the support system I have here in my house with my wife and kids. I get to face an entire week with no support no structure, are we taking bets on just how good my blood sugar will be this week? The stillness in the house is actually nerve wracking lol which is making me a bit stressed. Stress hmm now that does absolutely nothing to our blood sugar does it. Then I have all of those fathers worst case nightmares happen of what if one of the kids gets hurt while they are up there? How can I get there to be at their side where I belong?

So today instead of saying anything really about me (other than above lol) I want to speak with everyone about those others in your lives, your structure or support system. It does not matter if you are married to a diabetic or are the parent of a diabetic, today is about those who help to take care of us, the diabetics. I know you read this and go take care of me? I can take care of my own self I do not need someone else to take care of my disease! But, in all truth we need others in our lives to help us stay on track and not fall off the health train as it leaves the station each and every day. See we as diabetics make the decision to stay on the train or to step off as the disease is our curse or burden, but it is our support that is there to clean us up when we do step off.

Now please do not misunderstand, there are days in our lives where we simply want to “stick 2 fingers up to this vile disease called Diabetes!!!!” This quote was taken from the site of a new friend named Bec, you can read her blog at http://insulinsinvolved.blogspot.com/ . I fully agree there are days I hate this curse and pray to God that he just takes it away and let me live a normal life. It is these days the ones where we have had it that we cannot forget our support system. I am not saying they will stop us from doing it, if they are smart they will allow us our venting day. However they will be there for us when we have to pick ourselves up off the ground. As parents they stood by us as we rebelled against our diagnosis, as our loved ones they are there to put the pieces back together.

I say all of this to come to one great point, to all you diabetics out there reading this take a look at your support and tell them Thank You, tell them you Love them for all they do for you. There will be times in our lives where no structure is available and we really will feel alone, do not let those times be when you remember the support you normally have. Thank them daily while we may be the ones living with the disease they are the ones who are living with us; even if not literally lol.

Tomorrow is a new day and I am still unsure as to what I am going to write about yet. Check back in tomorrow night and see what the topic will be.

Saturday, July 24, 2010

Today's fun ride of sugar levels

Today was a long day; I do not know any better way to say it. This morning started out fairly well my blood sugar was 154mg/dl (8.5 mmol/l), I felt great even though this is still higher than my morning “goal” of 115 mg/dl (6.38 mmol/l). We took a trip over to our local farmers market to look at fresh fruits and vegetables, sat in the Explorer for about 20 minutes as the rain came down so hard we could not see. Once it was over we walked the market and found not a lot to be honest today but did find a nice bunch of Blueberries. From the market we headed for the pharmacy to pick up all my medications as it was time to renew all of the scripts.

Did anyone notice anything above that I left out? No, well that is only due to the fact you are still learning about me. You read yesterday about my daily medication regimen and well today is no different; however, I did not eat breakfast this morning with my pills and shots. So this dumb oaf of a diabetic who knows better starts to bottom out while we are driving around. Meredith got us home in time for me to get some sugar into my system. So by now I am running a 74 mg/dl (4.1 mmol/l) and I felt like my world was spinning way out of control. Ok I have food and I have work to do.

It is 17:00 and I am well on my way into making Zucchini Bread and dinner for tonight. Upon sitting down for dinner I found that my blood sugar was now 365 mg/dl (20.27 mmol/l). Talk about a major jump in monitoring; what was really weird is that where would you should feel some sort of issue, but I felt nothing out of the normal for this.

It is 19:30 and I have once again dropped, the current blood sugar is 94 mg/dl (5.2 mmol/l) and I am not feeling good. My body is shaking and I am starting to get confused on easy subjects. We had friends over this evening and I am having a mini blood sugar fit in front of them, I felt like a freaking idiot. Hey look at the guy who can’t keep his sugar level in check.

Now my day is over and I am heading to bed as soon as I post this message tonight. My mind has a massive headache from the amusement park trip my blood sugar did today. If there is anything positive to come from this day it is that I was pretty much pain free for the day. Tomorrow will be a new day in this life, I hope that you all will follow me through the day.

For now I bid you all good night.

Friday, July 23, 2010

Daily routine

Today has been the best day I have had in the last three months. I have had no major pains anywhere in my body and I have felt free to go outside and face the world. Even took the family for a little car trip around to see the country side and enjoy the day together. I am not saying I was pain free by any means of the word lol only that I had no major pain and was able to function all day.

I thought today I would share with everyone something that others may feel is personal information, but I think if I am going to commit my journey to everyone on here they need to know the whole journey. So today we are going to discuss medications, not just what type I take but the dosage clear down to the sliding scale insulin.

So here we go I am going to break this down by time of day also.

06:30
1 Metformin 500 MG – for the diabetes
1 Lisinopril 40MG – for high Blood Pressure due to the Diabetes in my system
1 Lasix 40 MG – for the water retention due to the Diabetes in my system
1 HCTZ 25 MG – also for High Blood Pressure due to Diabetes in my system
2 Neurontin 300 MG – This is for my Neuropathy
95 units Humulin - Insulin
30 units Lantus – Insulin
Humalog – Insulin Slider Scale based on blood Glucose level at that time. (Will include slider scale at bottom of post.)

08:45
2 Ranitidine 150 MG – Antacid tablets

17:00
1 Metformin 500 MG – for the diabetes
2 Neurontin 300 MG – This is for my Neuropathy
95 units Lantus - Insulin
15 units Humulin – Insulin
Humalog – Insulin Slider Scale based on blood Glucose level at that time. (Will include slider scale at bottom of post.)

As needed meds through the day for the pain of Neuropathy
1 Darvocet 100-650 Pink TB – Pain relief (rofl does nothing)
1 Flexeril 10 MG – Muscle relaxer (it relaxes the muscles called my eye lids and I sleep for hours after taking it).

Sliding Scale Insulin:
200 and below = Nothing
201-250 = 24 units
251-300 = 28 units
301-350 = 32 units
351-400 = 36 units
400 and above = Call Doctor (and say a prayer)
For those who read my information and are not in the United States below you will find a conversion chart for converting mmol/l (millimoles/liter) to the US measurement of mg/dl (milligrams/deciliter).

mmol/l mg/dl mmol/l mg/dl
1 18 11 198
2 36 12 216
2.5 45 13 234
3 54 14 252
3.5 63 15 270
4 72 16 288
4.5 81 17 306
5 90 18 324
5.5 99 19 342
6 108 20 360
7 126 21 378
8 144 22 396
9 162 23 414
10 180 24 432

I hope this is useful information for everyone. Please tune in tomorrow as I discuss, well guess you will have to check in and find out wont you?

Thursday, July 22, 2010

Introduction

Where and how do you start these things the world calls blogs? Well for me I guess it will start out with who I am and why I am here. My name is John Anno I am 33 years old and I live In Galesburg, Illinois. I am happily married to Meredith my wife of 10 years this year; we have three children and live a pretty normal life.

I was diagnosed with Type 1 Diabetes when I was a teenager and have lived my life with the diagnosis without ever looking back. Did the diagnosis really mean anything to me at all? No not really wow great I have a family disease rack it up for the record books. Oh, the intelligence of youth lol you always hear hind Sight is 20/20 well yes in this case it definitely is. Diabetes to me was not a disease or a burden it was something to forget about and get on with my life; this however is a bad mistake to make. I sit at my computer writing this new page in my life three months after being diagnosed with Diabetic Neuropathy.

Talk about a wakeup call in your life, “Hey you know all those pains you have been having? They are because you did not take care of a major medical condition and now you are going to pay for it.” You hear all these warnings about diabetes and you also live your life by a needle stick but does it really sink in how serious the disease is? Just how do you reach a teenager? If I could make a suggestion I would explain to them their condition is life threatening and their choices will affect them for the rest of their lives and that the choices may end their life even sooner. If someone had grabbed my attention maybe I would be better off now, instead I live with constant pain in my arms and legs while the rest of the world looks at me like I am insane because by all appearances I am a normal human being. You do not have pain it is all in your mind. The pain segregates me away from everyone else the best way I can explain this is I am lonely even with my family here at home as they do not understand the pain.

Well I hope I have not scared anyone away already on the first post. I am not sure if this will be a daily or a weekly blog as of yet. For the first few days I will post daily so that I can learn to develop this new section of my life. I have been doing a lot of research on Diabetic Neuropathy and Diabetes in general and would be happy to share with you any information I see. Some of my posts may be about articles I have read on new research being done to find a cure for us. Who knows maybe I will just ramble for paragraphs on end making no sense at all, guess you will have to keep reading to find out won’t you.