An interview by Rhonda Johnson:
We are visiting with Mike Thomas today from Belle, MO. Mike happens to be my nephew. He lives with diabetes. Mike, tell us about the disease you live with, your health challenge.
Mike (M). The type of diabetes I have is Type 1 Diabetes or referred to as Juvenile Diabetes. It is where my pancreas does not produce insulin that is needed. I’ve had it since I was nine years old.
(H): So, when you say Type 1 is there more than one type?
M: Yes, there’s a Type 2 which the pancreas will produce sometimes too much or too little insulin. Your pancreas produces insulin which your body needs to survive, but mine doesn’t produce any.
H: So, with Type 1 you don’t produce any insulin what so ever?
M: That is correct, it does not produce any.
H: You have had this for a long time. Tell us about that.
M: Yes, Like I said, I’ve had this for a long time – since I was nine years old. I was diagnosed by our local family physician who was Dr. Paul Brenner in Owensville, MO. My Mom and Dad took me to the doctor early one morning. At that time my blood sugar level was 693 which is extremely dangerous. That was taken at 7:00 in the morning. Normal non-diabetics will run 80 – 100 and mine was 693. I don’t think I ever saw Doc Brenner move so fast. He grabbed a needle and I got a shot!
H: Oh, my word,,,,, what would have happened, had they not taken you to the doctor and discovered your blood sugar was so high?
M: I would have died. Anything above 300 is running risk of stroke where your heart shuts down and it can happen very quickly. Right now, with Type 1 and Type 2 Diabetes, doctors and medical people emphasis to check your blood glucose levels often.
H: That is when you see someone pricking their fingers; that’s what they are doing?
M: Exactly, that is what they are doing. My doctor many years ago, Dr. Goldstein at the University of Missouri, said “to consider it a snapshot of your blood glucose at that time”.
H: When was that?
M: That was around 1977 when I was first diagnosed and they started using the first glucose monitors. I had one of the first machines, I actually still have it.
H: Let me go back to when you were first diagnosed. You were only nine years old. What caused your parents to take you to the doctor in the first place? What was going on?
M: I was gaining weight rapidly, losing weight rapidly and not just a pound of two; several pounds. I was only nine years old, and I was retaining a lot of water. I could not get enough water to drink. I had absolutely no energy, no cognitive ability to reason or determine anything of value. It was my blood sugar going up and down and I had no idea.
H: My goodness, you had no idea and your parents obviously recognized that something is very wrong with our little boy.
M: Exactly. On that same note, considering I was only nine, newly diagnosed, realizing something is wrong with me after this initial diagnosis from Dr. Brenner, we (my parents and I) were sent to the University Hospital in Columbia for further testing and education. There was a student medical doctor who came in to talk with us. There was a group of children who had just discovered we had diabetes; we were around ten years old (late 1977 – 78). I continued to go there until I was twenty-three – twenty-four years old. Anyway, this medical student came in and was stressing to us kids that since we developed diabetes so young, our chances were extremely high we would not make it to twenty-one without losing a limb, eyesight or something. That’s hard for a kid to hear.
H: That would be hard for an adult to hear, let alone a kid. I’m so sorry you had that experience. It can be used as a good reminder to the medical field to be gentle when communicating to patients at any age, especially with a new diagnosis. We talked about some of your symptoms, gaining weight, losing weight, a lot of thirst, anything else?
M: I was constantly urinating, getting up and going to the bathroom 7 – 8 times a night. As you rest you digest. That’s what you do, I would try to sleep but I couldn’t.
H: My goodness, that was a complete life changing event, not only for a little child, but also for your entire family. Your parents realized “our child is ill and we have to do something differently than we’ve done before, every day – several times a day, to keep him alive and well”.
M: Oh yes, it’s a life style change. Instead of having fried food and eating lunchmeat sandwiches, my Mom had to learn nutrition, food groups, balanced meals, counting carbohydrates; we counted calories at that time. Everything had to be weighed. I think they still have the scale, and I absolutely starved. Especially as a kid, that was the worst. At nine years old that was the worst for me. I was always hungry. I would go to bed hungry, get up starving and that was after I found out I had to take shots every day. They allowed 3 meals, and 3 snacks a day. That was back in the late 1970’s.
H: You were probably used to eating anything you wanted at about any time.
M: Anything I wanted. I was accustomed to a normal kid’s life. I would eat, go out and play and then overnight, everything changed. I lost a pretty significant amount of weight but it did turn into muscle which was a good thing, because muscles don’t store fat like fat or flab does. It helped tremendously, being able to play and ride my bike again like I was used to doing. I kind of was able to just be a kid again with the exception of having to take shots every day. Back then we did a urinalysis test. You urinated on a test strip to check your blood level. It wasn’t really that accurate. Sometimes you could end up taking too much insulin which wasn’t good either. Your blood circulates around and those tests weren’t as accurate as the tests are now days.
H: Thinking about this happening to a nine-year-old; not only your parents had to be aware of this health condition and what to do, but other adults in your life such as your school teachers needed to know what to do. Obviously, your parents could not be with you at all times. What can happen if you are not getting the insulin you need throughout the day?
M: You can go into an insulin coma really quick if you don’t get the insulin you need and die.
H: Wow, how frightening. Have you come close to anything like that?
M: I’ve not gone into an insulin coma but I’ve been un-responsive enough. That has occurred more recently then when I was a kid. I’ve woke up with the ambulance crew standing over me, checking my blood level and it was 48.
H: What does that mean?
M: When non-diabetics sleep their blood glucose level goes between 80 – 100 maybe 120. I’ve woke up with the ambulance crew standing over me giving me the Dextrose IV. My blood sugar level was 48.
H: And you had no idea anything had happened?
M: No idea. I had somehow got out of bed, fallen out of bed, I’m not sure. My wife Sheila realized something was wrong and called the ambulance. That’s a scary feeling too when you wake up and you have a bunch of strangers standing over you (Mike is laughing telling this). I always check my blood sugar before I go to bed, always. I even get up now in the middle of the night and check it pretty often, because, like I said, “it’s a photograph snapshot of what your blood sugar is then”, that is not telling me if it will be going up or down. It just tells me what it is at that time. A lot of diabetics have the same trouble as I do with that issue; not knowing which direction it will be going. I talk with a lot of diabetics locally. We cannot figure out why they haven’t made more progress. We do not understand why there is not a better way to check this. Diabetes has been around since the early 1900’s. We cannot figure out why they haven’t made more progress with monitoring and caring.
H: I can understand why you feel that way. I’ve heard other people with debilitating disease wonder the same thing. People don’t understand that why in this day and age it seems there are little gains in the health care field. Perhaps there are larger gains that we don’t know about, but when you live with a health challenge for almost your entire life as you have and you see no change for the better in the near future it can be dis-heartening. You tend to sway toward “I’ll believe it when I see it” type of hope. As your life goes on since you were nine and how old are you now?
M: I am fifty-one.
H: Wow, so you have had this for a really long time. You look good! How do you feel?
M: I haven’t lost my hands, I haven’t lost my eyesight. I have regular three-month checkups with my doctor and I get blood work done. The only thing they worry about is my cholesterol but I say, “well, I have 3 kids so that keeps it elevated” (laughing)
H: Kids and grand-kids are enough to keep anyone’s cholesterol level’s elevated just worrying about them! So, Mike, you joke when you say this about not losing your hands or eyesight but those are legitimate worries in the back of anyone’s mind who has this disease. What are some of your concerns or worries: the bad things that can happen?
M: A major complication that a lot of diabetics will experience is Ketoacidosis. My understanding of Ketoacidosis, is where your own body has too much glucose in it. The glucose is being absorbed in your body and it converts to an acid and spills out through the urine. That can cause things to shut down and become major problems really quick inside our bodies. A good place to learn more about Ketoacidosis is Web Md or talk to your doctor. Some other complications a person with diabetes worries about is if they are required to have surgery. There can be major complications due to lack of blood flow. Your heart has to work harder to get blood to your extremities and when it has to work harder it puts an undue strain on it. You can have rapid breath and just a lot of different things that your body would normally neutralize is now more difficult for people with diabetes. Diabetics can have problems with their eyesight. If a diabetics blood sugar is too high they will experience headaches, blurred vision, irritability. Unquenchable thirst; drinking lots of water; some do some don’t.
Nobody has the same exact symptoms with diabetes. I think they try to group these diabetics down into too broad of a stream. Type 1 and Type 2 Diabetics; that’s all they have. I think they should expand that more and narrow it down. For instance, you have Type 2 with obesity, Type 2 with diabetic nerve pain, there are tons of things that can go wrong with you because your blood sugar levels are too high or too low. Either way you are in danger. That is why I always say a prayer just thanking God that I’m able to get up in the morning because it is not a given, it is a gift.
Being diabetic, whenever you do get up, the first thing you want to do is get an idea on where you’re at, meaning your blood sugar. Then you can either take insulin if you are Type 1 like me or even Type 2 can take insulin now. You want to see where you are at and then get the medicine in you to get squared away. The only way you can do that is by checking your blood level to get that snapshot and see where you’re at right then.
H: That makes sense. How many times a day do you check your level to see where you’re at?
M: At least 10, at least 10.
H: My goodness at least 10 – so is that pricking your finger?
M. Correct, pricking my finger.
H: You know Mike, being your Aunt, one of the things I’ve thought about over the years, because I’ve known you your entire life, and after you developed diabetes, I felt bad for you because I thought about how often you had to prick your finger and how that must hurt each time you prick your finger. It made me pause and think how many thousands of times you must have stuck your fingers. I hate it when I go to the doctor once a year and they prick my finger to check my blood because it hurts! I asked you one time if that didn’t really hurt and I’ll never forget you said; “Aunt Rhonda, my fingers are so calloused over from so many years of sticking them I don’t even feel it”. That made me sad. I realized how many times you have to do this every day just to survive. I think people without this disease feel for diabetics, or other people who are suffering or living with any kind of health challenge. We can feel empathy for them but we don’t know the whole of what they are going through do we? We kind of know about it, but we don’t realize what a battle it is to just get up and make it through the day.
M: That’s right, just to get up and try to make it through the day is a battle. I’ve pricked my fingers millions of times over the years. Just this year alone I’ve lost count of how many times.
H: Like you said “it is a battle”. It’s not the worst thing but it is a very difficult thing. And not to sound over dramatic but I think one has to think of it as if in a battle. My Dad, your Grandfather was in world war two under General Patton. They were taught “know your enemy and kill it or at least defend yourself against it” and I think that is excellent advice for any battle. We have to look at any disease as the enemy. We have to recognize that this is not my friend, it’s my enemy and it can kill me if I’m not on top of it and doing battle with it. A battle to live.”
M: Exactly right. Diabetes is not my friend. I’ve had it so long that I can’t remember not having it. I always look at it like “this is my life and I’m not going to let ‘it’ (diabetes)control me”. That’s the way you have to or at least that’s how I have to look at it. I’m not going to let it control me.
H: That’s good to hear because one of the things we do at Here Am I Hear Me is recognize that we are not afraid to look at something for what it is, even as serious as it may be. We don’t try to sugar coat something for what it is or is not, because why do that?
M: You are right. Straight, simple and be truthful. What I’ve always found also, is some diabetics have this issue, others have a different issue. I may have something totally different, but listen to all of us.
H: So, what would you say to someone who has either been recently diagnosed with diabetes or they have been living with it for some time. What would you encourage them to do? I look at you and I see “I’m still here! I’m 51 years old, I’ve had this for over 40 years and I’m still here making it.”
M: Going back to someone who is recently diagnosed, especially a child; kids are resilient. I’ve survived it. Don’t let it over whelm you. There is a lot to encompass. Don’t try and encompass it all. The medical industry will throw tons of information at you. You cannot remember everything. And, with the advances in the medicines, the procedures, the ambulance crews and this type of thing, these are all good things to help you. You are going to have setbacks. My Dad always said “don’t be afraid to take a step back before you take another step forward” you can do that time and time and time again. By doing that, you learn what works better for you. For instance, pizza. My family loves pizza. I have to avoid it like the plague. That’s one of the reasons the ambulance crew showed up at 2:20 in the morning. I had pizza that evening and pizza has carbs that are both fast acting and slow acting. So, I took my insulin like I would for a normal meal and my blood sugar may go a little low as I went on through out the night. But when I went to bed and rested; and as we rest we digest the food we ate, it took too much to digest this pizza and it bottomed me out. So, I’ve learned from that. When the medical field tells me not to do something, that is for a reason, don’t do it, or at least keep everything in moderation.
Don’t let them overwhelm you with information. There are so many variables that can affect your blood sugar. Stuff will hit diabetics in different ways then people without diabetes don’t realize. Birthday parties for instance or events at school. Example: Why do they have events at school taking place at supper time? I had trouble with that when I was in junior high. I had to eat at 7:00 in the morning, noon, 5: 00 in the evening. I still stick to that schedule pretty closely even though I now have a pump with insulin but I still stick to that schedule. Back then, I didn’t have a pump and I had to stick to a meal plan on time. I still do. I can fluctuate a little, but I stick to that schedule because it works.
Someone with diabetes may want to consider a pump at some time. I’ve had my pump for about 15 years, since January of 2003. I have an upgrade coming but they are so expensive. My pump was over $18,000. At the time I got this one we received a grant. Insurance took care of some of it, but I still had to pay a good portion. And then, you have the supplies which is like $854.00 a month for supplies. If I didn’t have insurance that is what it would cost me. That does not include the insulin. I don’t have a choice; my life depends on it. Insulin is almost $3,000 a bottle. They’ve been manufacturing insulin for almost 100 years and they are getting almost $3,000 a bottle for insulin? Why is that? Seems to me, if they’ve been manufacturing for that long, they should have it down to nickels and pennies. I don’t understand, everybody who needs it should have insulin.
H: You know Mike, you’ve lived with this for a long time so what other things do you do to make things work best for you? Do you belong to any support groups?
M: The support groups are out there. There wasn’t anything that was offered to me from the doctor’s office when I was diagnosed or even recently. I’ve become acquainted with a lot of people in my area who have diabetes and we talk. Around here it seems like anybody who gets diabetes will come find me and I’ll be more than happy to tell them what I know, which isn’t much, but I’ve been through it and I might know more than they do at that particular time. I might give them some points to help them out with things. A lot of people have trouble with the holidays because of all the different food, having my pump helps me because I can compensate quicker, but I’ve gotten to where I can simply look at food and count the carbohydrates that I will take in. After having it this long I can pick up on what I can or cannot have.
A typical day for me starts by taking my blood sugar when I first get up. If it’s in a reasonable range, I’ll go out and do something and not eat. If I do need to eat I’ll get a couple pieces of toast with jelly, I’ll do my chores during the day; feed and water the chickens and then I’ll come in and check it around 9:00 to get an idea on where I stand. I’ll check it again at 11:00, check it again at noon before I go in to eat, check it at 1:00 when I come back outside. I’ll check it again around 4:00 / 5:00 when the news comes on. As we get ready to eat about 5:00 I do check it again and then I’ll check it around 7:00. Those blood glucose strips are expensive but it’s money ahead if you check it and check it often because you need to know where your sitting at right here and now. To me, that is still the most accurate way of checking. I like to do it the old-fashioned way. I like to check on my fingers but the new products for pricking your fingers are so thin they won’t even go through my calloused fingers. I may have to move down my finger to get a good stick. I like to check my fingers because it may read differently on my arm vs my fingers. I don’t know why, my doctor couldn’t even tell me why it’s different, so I check where I know it’s going to be a good reading. I keep a close watch on my blood glucose meter and keep it calibrated. You have to take care of your instruments that are taking care of you. Batteries; I have rechargeable batteries on my meter so I keep those charged and I buy fresh Energizer AAA batteries for my pump because they seem to last longer for me. I’ve tried the other brands and they don’t last as long for me.
H: Is there any financial assistance offered to you?
M: I don’t get any. If there is I don’t know who or where it would come from. Like I said, I don’t receive any. I do have insurance but it seems like no body wants to cover the pumps.
H: So, there’s no organization that you know of saying “we recognize you must have this in order to live, so we are going to raise funds to help you with the financial burden of it?”
M: Nobody that I know of and the prices of stuff keeps going up. You have to know your insurance and you have to know your plan. For instance, I know at the end of the year I will have a great big deductible I’m going to be required to come up. I have to pay it because I must have my medicine. I need to plan so I have that money saved aside to pay my deductible because it is expensive.
H: People who are living with diabetes for a long time; you have to get tired of it and it can become over whelming, what is your message to them:
M: Sure, you get tired of it. You get depressed, but hang on. Keep at it. Everyday is a new day, you never know what tomorrow is going to bring. My message is just keep hanging on, don’t give in to all the new things. You see tons of commercials that’s going to fix this. They may work great but they may not work for you at all, just stay focused and do what works for you. I kept a notebook for years, with ideas of what to avoid, etc. That helped me.
H: Mike, we really appreciate you visiting with us and sharing your story. We always emphasis, we are not medical people and we do not diagnose or provide medical advice. We always instruct someone with any kind of health challenge to consult their physician and follow their instructions. At the same time, we like to talk to people who are living through something because they know what works for them and it may help someone else. Wrapping this up, what more would you say to someone who is living with diabetes?
M: Wake up in the morning, keep track of your records, keep an idea on what you want to do, plan for your day, strive to get your overall A1C levels down and keep them on the lower side because if will benefit you so much. Normal A1C is between 5 and 6 and I’ve been under 7 for thirteen years. Finally, laugh every chance you get. Laughter is truly a great medicine. Find something to laugh about. Don’t take life so seriously. Poke good natured fun at things or yourself. I call myself the “KING OF THE ELECTRIC SPOONS” musician extraordinaire. If that puts a smile on someone’s face then that’s a good thing and I feel better because of it.
Here Am I Hear Me Foundation does not provide medical advice, diagnosis or treatment. Never disregard professional medical advice or delay seeking medical treatment because of something you have read on or accessed through this website. You are encouraged to confirm any information obtained from or through this website with other sources and review all information regarding any medical condition or treatment with your physician. This story is for informational purpose only.