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.


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.