Monday, June 29, 2009

Diabetes vs. Cancer

I'm not going to lie. I would get irritated beyond belief when they would close down streets and bridges in San Francisco for the Cancer and AIDS walks. Not that they didn't deserve to have bridges and streets shut down for them, but merely for the fact that our Walk to Cure Diabetes was held in Crissy field, far away from traffic and news cameras. I would think, "Why can't we stop traffic? Why can't we get in the worlds face and say CURE THIS DISEASE?" When I would walk, I would wonder why am I going through these motions when it isn't causing the world to see? Isn't that the reason for these walks? To band together and say, "Look at us, Diabetes is stupid and we can cure it if more people cared!" And I would stupidly think to myself, "At least there are cures for cancer..."

And then this year my husband got cancer.

And the Lord has once again opened my eyes to see; I can handle diabetes every day this year. I could not handle cancer every day this year. Cancer is scary and horrible and deserves to stop traffic. Yes there are cures, but they are maybe cures, everything is, "we'll see..." and percentages. "Yes, there is a 60% chance that you are cured, but who knows where you will fall, only time will tell." It is a terrible place to be.

My children can run. My children can go to scout camp. My children have the world at there fingertips. Many of those with cancer can't think about tomorrow because they are too busy thinking about getting through the next hour. Don't get me wrong. Diabetes still sucks. My sweet little boys put up with so much and endure more than I will ever truly understand, and I adore them for it. But now, I don't mind so much when I see the crying faces of the Avon Cancer Walkers on TV. In fact, I cry with them, and I feel for them. Walk on sisters.

Saturday, June 27, 2009

Diabetic Independence: Is he ready?

I just sent my 11 year old son off to scout camp for a week and I am a wreck. My husband will be staying with him for the first few days to get him settled in, but he'll be there three days after that alone...counting carbs by himself, remembering to bolus by himself, being responsible by himself...I'm not ready for it. I'm crying as I write this and I know that I am an idiot. J has been dealing with this for 10 of his 11 years of life, he knows what to do and he can handle it. My brain is so reasonable, it can give me millions of reasons why he is ready for this, but my heart is breaking. I AM NOT READY! As I was packing him up last night I was only regretting my encouragement for him to attend. Why did I encourage him? A week ago I had my husband almost agreeing with me that it is too soon, and he shouldn't be going to camp at all. But then the brain steps in...We have been letting J get out of way too many things because of his diabetes. It's not an excuse anymore. He needed to go. But again, I am not ready. He knows what to do, but will he be responsible enough to remember? My only saving grace is that he is usually really good about knowing when he is low. But will he know that he is low when he is swimming in the middle of the lake? If I were a betting woman I would bet he comes back just fine. But again, that is my brain, not my heart. My heart worries and aches for their absence. I totally give myself good mommy points for totally playing it cool when he left. He had no idea all morning that I was dying with worry inside. I played it like a pro until they were just walking out the door and J saw a tear in the corner of my eye. He gave me a kiss and said, "Don't be sad Mom, It'll be fun." It's too bad no one knows this blog exists except for me. I could use some love.

Thursday, June 25, 2009

Why Minimed is far superior to Animas

I am no technology geek, but I am a Mom who has worked with both Minimed and Animas pumps. Unfortunately, my youngest was so little when he was diagnosed that the Animas was our only option at the time, as Minimed pumps did not deliver small enough increments of insulin. I don't want to seem ungratful for how the Animas pump has helped our lives, it was certainly better than no pump at all, but given a choice, I would pick a Minimed any day of the week. Below, please find a list of things that bug the heck out of me about Animas pumps...

1. It delivers the insulin too fast. Slower delivery allows the insulin to absorb properly into your site. Fast shots of insulin creates "Pooling" and sometimes the insulin does not fully absorb.

2. The buttons you need to push to give yourself insulin is ridiculous. (1)Ok to open screen, (2)Ok to open menu, (3)Ok to bolus, (4)scroll down to carb smart. (5) Ok to open carb screen. (5)arrow up to open carbs. (6)Ok to enter carbs, (7)Ok to add blood glucose #, (8)Scroll up to enter BG, (9)Ok to enter BG, (10) Ok to show result, (11)Scroll up to manually enter the number of units the pump tells you to give, (12)Ok to enter number. (13)Ok to Go and actually deliver the insulin. INSANE! Compared to Minimed's 6 buttons. Bottom line, young children cannot give themselves insulin with it, as compared to my 5 year old excelling on the Minimed pump.

3. When you replace the battery, a full rewind is required. Which requires many more buttons to push and an alertness that is not always available 1:30 in the morning.

4. Changing reservoirs and sets takes far less time on a Minimed than an Animas. The Animas sets are hard to work with, luckily you can use Minimed quick sets with the Animas pumps.

5. The black cap would often come loose and we would get the infamous "Pump is not primed,no delivery" message. Which again, requires many more buttons to push to fix, including priming and sometimes a full rewind.

6. The customer service at Minimed is quicker and more efficient than Animas. We broke a Minimed pump once at 8:00 on a Friday night and the new pump was at my house by 11:00am the next morning. Once an Animas pump broke and we had to wait 3 days for a replacement.

We were blessed to receive a Minimed pump for our youngest yesterday. Now the three pumps will be the same, making life easier for us and our extended family who work with the boys pumps as well. L has officially given himself his first bolus, (supervised of course,) and it is such a relief for all of us. J is elated that he can now help L give himself insulin, and I am elated too, my life just got a little easier, and that is nothing but a miracle.

Friday, June 19, 2009

Our Story

My husband grew up in a bakery. His parents came from Germany and opened a bakery in the 70’s. I got to know my husband when I got a job at his bakery when I was 18. Long story short, I married him 2 years later. We were young and blissfully happy. We weren’t married a year before I began lobbying for a baby. I convinced him with the premise that it usually takes a year or two to get pregnant, and of course, I got pregnant weeks after we began trying. Our first son, M, was born right after our second anniversary. Our second son J followed two years later.

J wasn’t 7 months old when we began to worry about his health. He was such a skinny little fellow, very clingy, and a crier. There was always this sick feeling in the back of my stomach, the motherly intuition that tells you something is wrong. I took him to the doctor a couple times, but he always checked out. In his seventh month he began waking up with diapers so wet they would literally be fallen off by the time I got to him. And he was always thirsty. Now, my older brother has Type 1 Diabetes. He was diagnosed just a couple years before, but he lived in Taiwan at the time, so I was very much removed from the entire situation. I think I probably let the idea flutter in the back of my head that J was diabetic, but he was a baby, so I quickly dismissed the possibility. We spent a month fighting thrush and various yeast infections in his diaper area. He became increasingly needy and skinny until one evening it all came to a head. He was throwing up, lethargic, and by the time we got to the emergency room, seizing. He was so dehydrated they had to call in a surgeon to find a vein to hydrate him. We almost lost J that night. I spent the entire night in the waiting rooms making deals with god. "Please save my baby." It was my pediatrician that diagnosed him the next morning. He was airlifted to San Francisco and our diabetic life began.

I was told that the chances of having another child with diabetes were 3-5%. Not that this had any bearing on our decision to have another child, but it was four years later that B was born. He was a giant baby, 10 pounds 4 oz. and a full 24 inches long. He was so easy compared to J. His first two years were only a joy as he was such a happy and content baby. Our forth son L was born two years to the day after B. L was a surprise pregnancy, not that I don’t know how it all works, just the odds of him coming to this world were a million to one and he found a way. L was 2 ½ when he woke me up one morning telling me he was thirsty. Three more times in an hour, thirsty, thirsty, and thirsty. I checked his sugar and he was 220. I called the doctor hysterical. Blood tests confirmed, only slightly, that he would be a type 1 diabetic. We caught it so early that for the next 3 months we treated him like a type 2. As long as he didn’t eat anything too sugary, his blood sugars were in range. He got strep throat and ended up in the hospital because his throat closed and he had a hard time breathing. The illness accelerated the autoimmune process and he was on insulin before we left the hospital and on an insulin pump 4 months later.

Fast forward one year when B was bugging me for a drink after a party we went to. His blood sugar was 179. Our regular endo was on vacation and the fill-in dismissed the fact that he was on the diabetic road. I checked his sugar on and off for a month, in denial, hoping I was imagining things. 95% of his blood sugars were normal. It was that 5% that indicated the inevitable. He began insulin one week before he began kindergarten and began pumping two months later.

Ryan and I were married 19 years. Our boys are now 22, 20, 16 and 14. My oldest does not have diabetes. Tests indicate he is in the clear, for the next few years anyway. My husband closed the bakery eight years ago and began selling bakery supplies to other bakers. He loved the job and I loved the fact that he didn’t work 12-15 hour days anymore. Through this blog I hope to relate experiences we had and help others see that there is a light at the end of the tunnel. Whatever emotional phase you are in as a loved one of a diabetic, we’ve been there. And the worry, that sits with you like an old friend, he is our friend too. We just try not to make him the life of the party. Take the ride with us.

The rest of the story:  My husband was diagnosed with Metastatic Melanoma the end of February 2012.  His leg was heavy...I made him go to the emergency room and the doctor immediately wanted to do a brain scan.  I thought the doctor was mental...he had to have a blood clot in his leg or something, right?  I'll never forget hearing the gasp from the doctor behind the emergency room curtain when he got the call with the brain scan results.  6 brain tumors, and further scans revealed tumors in his lungs and abdomen.  We spent the next six months in a bubble of faith.  Ryan was convinced that no matter what, everything was going to be ok.  If you spent five minutes with him, you would have believed too.  We prayed for a miracle every day, and sure enough we received multiple miracles along the way.  After courageously enduring a ridiculous amount of doctor appointments, and multiple treatments, Ryan passed away on September 2nd, 2012 in the arms of his family.  Even with over 100 tumors in his brain, he was Ryan until the very end.  He knew us.  He loved us.  He inspired us.  And as much as we miss him and mourn his separation from us, we know he is still around gently comforting us and letting us know that all is well.  He will forever be a strong guiding force within our family.

More of the story: Two years after Ryan passed, I met Doug. He was a Radiology Manager at a University Hospital across the country. It seems impossible that a California girl would find her other half in the middle of Indiana, but it was so. I waited for red flags to go up throughout our relationship, but to my delight, there never were any. I tried right out of the gate to scare him off with the fact I have three boys with Type 1. He seriously was like, "Whatever. That doesn't scare me at all." So I decided to keep him. We were married 14 months after we met in June of 2015, and we are ridiculously in love. Together, we have nine children with ages ranging from 14 to 24. Currently five are away at college and four are at home. I know our finding each other was not an accident. Ryan was right, everything is going to be ok.

(Updated 1/2018)