This Special Needs Mom, Special Needs Too

•  As is the case with most families, there are several medical conditions that touch us closely. For us, those include not only autism and epilepsy, but also diabetes, cancer, multiple sclerosis, alcoholism, drug addiction and depression.

Today, there is some great news about type 1 diabetes, something I have been living with for 18 years.

http://www.cbsnews.com/news/possible-breakthrough-in-treating-type-1-diabetes/

I spend so much time focused on Liam’s health, I sometimes forget about my own. Then you have days when you can’t forget your own illness. Because there is some really great news about a possible cure in the pipeline, I want to take the opportunity to talk about my life as a diabetic.

Yesterday I spent an unexpected half day at the doctor’s office after waking up sick to a bloodsugar of 415. It doesn’t happen that often, but it sucks when it does. I have been wearing an insulin pump for about 15 years now. An insulin pump is a pretty amazing little device for type 1 diabetics like me. The technology has gotten so good that it’s almost like having an artificial pancreas. But it’s not a cure, not by a longshot.

Diabetes is a daily battle of balancing the food you eat with just enough insulin to cover it without giving too much. Too much is scary. Overdose yourself on insulin and you can find yourself having hypoglycemia, a life threatening state. I have to make a judgment about everything I eat, an educated estimate of how many carbs there were, and dial in a “bolus” to my pump, to deliver enough insulin to cover what I ate. It’s far from an exact science. It’s my best educated guess. I’m pretty good at it after 18 years of doing it, but sometimes when life gets busy, you forget to check your blood sugar enough times in the day, and it can creep up on you and go out of whack. High blood sugar makes you feel very sick and nauseous. Low blood sugar makes you feel nervous, shaky and you cannot think clearly. The frustrating thing about low blood sugar is it first effects your brain and your ability to help yourself. You are too foggy to recognize you are going into hypoglycemia. Just like constant nervousness about Liam having a seizure, I carry around a little bit of fear about hypoglycemia all the time too. That’s because it happens so rapidly, and if it’s severe enough you can lose consciousness. At that point, if you are not found and brought to a hospital quickly, you can fall into a coma and become a vegetable or die. Scary right?

Another aspect of having diabetes for a long time now - I am starting to have some little signs of long terms complications. I have not had the best control the last few years. Because of being frightened by the immediate dangers of low blood sugar, I am a little gun-shy about getting too much insulin. So my bloodsugar is high a lot of the time. The bad part is the long term damage that is done by high blood sugar. Think of the extra sugar as like sandpaper in your blood, slowly damaging all of your organs and vessels. I have been lucky so far. No signs yet of eye damage or kidney damage yet. I do have some neuropathy creeping in though. A little numbness and tingling in my extremities from time to time, no big deal yet.

But the biggest problem I am facing is my abdomen has extensive scar tissue from the insulin pump. I change out pump sites about every 3 days. Insulin has to be injected into your skin to get into your bloodstream, and the abdomen is the most convenient location for the infusion set. There is a small needle that goes in to inject a tiny plastic cannula, then the needle comes back out. The sound of it makes some people cringe, but it is a lot better than the multiple injections I once gave myself, up to 12 per day. The problem is insulin can’t absorb into scar tissue, so if you hit it, you won’t realize it until you have an extremely high blood sugar like the one I did yesterday morning. I wonder how if I manage to keep myself alive for another 40 years what part of my body won’t be used up. This is a big reason I am excited about a real potential cure!

Luckily, I have never lost consciousness from my diabetes. But I have come pretty close a few times. When my kids were younger, I worried about this a lot. That’s one reason I stopped drinking alcohol completely a few years ago. (Alcohol also makes blood sugar go haywire.) I had a few close calls, and I just decided it was too risky. With Tom being on the road so much, I have to keep it together for my kids. This was not a hard decision for me because alcoholism is another horrible disease that has touched my family.

Sick days for me are hands down the most difficult part of parenting a special needs child. I can never afford to be “off”. You have to always have your guard up because autistic kids are constantly getting themselves into dangerous situations. Sick days are the rare days I feel sorry for myself and wish my husband didn’t have to be away so much. It doesn’t matter how awful I feel, I still have to get up and make sure Liam gets his medicine and everything he still doesn’t know how to help himself with.

Luckily I have in my life my savior, Lilah Peterson. She's only 10, but Lilah always comes through and handles these situations with so much maturity. I couldn’t be more proud of her. Yesterday when I was feeling terrible, she very calmly told me to take my time. It was ok if they were going to be late for school. She knew I had to get my blood sugar back down to a certain level before I could even drive a car. She helped watch Liam and get him ready for school. She was ready to call 911 should anything happen.

Since this is my first time to talk publicly about diabetes, I want to also thank a couple of dear friends who have helped me when I was sick or having hypoglycemia. The first time I had a severe hypoglycemia was backstage during a Cheap Trick show. Lilah was an infant and I became very “out of it”. I think Cheap Trick tour manager Carla Dragotti thought I was on drugs. That's what hypoglycemia looks like. She found Pam Zander to come and help, and thankfully she did. Pam immediately recognized that I was going into insulin shock on and helped me get sugar. There were also several incidents when I was pregnant that my friend Jen Bowden had to bring me to the hospital late at night when I was sick from stomach flu. Stomach flu is also very dangerous for a diabetic. If you can’t hold down food, your blood sugar can drop and you have to go to the hospital for fluids. This happened a few times during my 2 pregnancies, and Jen was always the one who was there to get me to the hospital. Thank you so much to all of you who have been there for me in these situations. It is an embarrassing and depressing state to find yourself in.

Last, I want to say that Tom has had such strength through having two people in his family with chronic illness. He used to be so squeamish at the mere sight or thought of blood. I think he has worked through that now. Tom has a way of bringing humor to things. He used to kid me about what he would do if he had to give me my insulin shots. He jokingly threatened to inject it into my eyeballs. Ouch! But when things get bumpy around here, as they often do, he is such a source of strength. No doubt, I am a lucky girl.

 

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Alison Peterson
Alison Peterson

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