Thursday, May 25, 2017

Do Diabetics need other Diabetics in their lives

I just read an article where a type 2 diabetic wrote how wonderful it is to have supportive diabetic friends.

I've also read on different diabetic blogs where the juvenile onset diabetics and type 2 diabetics talk about the friends they've made on-line.

Then I stop and think, what do all these people consider friends? I consider a friend someone with whom I've either met face to face, or have talked with on the phone or skype. I don't consider someone a friend because I'm following them on Twitter or Instagram or You Tube. I don't consider someone a friend just because I'm friends with them on facebook. And I haven't had a facebook account in over 10 years.

And why do most diabetics seem to feel they have to surround themselves with other diabetics? This is something I really don't understand. Are they so lacking in self confidence that they need other diabetics to put themselves up? Are they afraid to talk with their doctors? What is the fascination about having diabetic friends? I just don't understand this?

I'm not being critical. Maybe it sounds that way. I just don't understand. Up until I went to diabetic camp when I was 8, I didn't know another juvenile onset diabetic. None. I was the only juvenile onset in my hometown. There were no others. I learned about type 2 diabetics, who I, at the age of 6 called fake diabetics, because they didn't have to have shots. But I hadn't met any. Yes it was nice knowing I wasn't the only juvenile onset on the planet, and I did write to one for a while.

As an adult, I met and befriended one at my church. We didn't hang out because he worked and my job was taking care of my children. We'd see each other at church functions. When we saw each other, we didn't immediately ask how our blood sugars then later A1C's were doing. Those weren't what were important to our friendship. The diabetes was something I learned about while we were talking. He was the only adult juvenile diabetic I've ever met and befriended. Because we had to change churches, I no longer see him.

I've tried going on the different diabetic forums. I don't understand most of the people there. They all seem to agree with one another. Most people there seem to think that N and R insulin are horrible and should be thrown away. I don't understand that. I loved those insulins. I never had any problems with them. None at all. I didn't feed the insulin. I KNEW how to use it. I was on it from DAY 1. I started with U40 of Beef NPH, then went to U60, then U80. R was added when I was in high school. I was on a sliding scale up until I was switched to Humalog and Lantus in 2014 after my cancer surgery when I decided to try an endo.

My endo isn't a fan of N and R. She says that they are old insulins and don't work. Well they worked for me just fine. She also suggested I stop the sliding scale and switch to count carbohydrates. I only did both of those because I knew she wanted me on the pump and I knew it'd be easier using the pump on Humalog and counting carbohydrates.

I now wonder if I was right to switch to the carbohydrate counting. Why? Because the number of carbohydrates depends upon which book you use. Or which website you visit. There is a web site Recipe, Calorie, Carbohydrate that allows you to type in a recipe and it will give you the nutritional value of a recipe. The only problem is you have to figure out how many servings is in the recipe.

Most of the people on the forums seem to always agree with each other. And they seem to all like the same things. They seem to think that artificial sweeteners are the best thing in the world. I can't use them. They all, all of them give me head aches, I hate the aftertaste. I refuse to use them. So I don't. And eating low carbohydrates. They think if you eat over X amount of carbohydrates, you're basically killing yourself.

People, get one thing straight. All foods contain carbohydrates. All foods turn into sugar. All of them. Some have very very little some have a great deal. But all foods have some. Even an egg had some. Check it out, Google or Bing nutritional value of an egg.

My endo has a support group for juvenile onsets. Which I probably join. The biggest problem is her office is a one hour drive one way. And I have a very bad back. Driving there for my appointments kill my back for several days after the appointment. Driving there once a week, isn't an option. The endo in the city I live in does have support groups for juvenile onsets. Yet he has one BIG requirement. You have to be a patient of his or his partner to attend the support group.

So what's so important about having diabetic friends? I don't have any and I'm doing just fine.

Friday, May 19, 2017

Friday- More Than Diabetes

Lets wrap up the week by sharing a little more about ourselves, beyond the chronic illness we or our loved ones live with. Share an interest, hobby, passion, something that is YOU. If you want to explore how it relates to or helps with diabetes you can. Or let it be a part of you that is completely separate from diabetes, because there is more to life than just diabetes!

First, I am the only juvenile onset diabetic in over 6 generations. So that is a real big thing. Nobody can figure out how/why I was the lucky one to get this disease. Why did I get it. What did I do. They never asked me, but they did ask my parents. The family never thought to ask this question when I wasn't around. I knew, after talking with my family doctor, that my being a diabetic wasn't my fault, so I just ignored my ignorant family members. But I'd still like to know why I'm the only juvenile onset. There are a few type 2's, but only ME as the juvenile onset.

As you've noticed, I use juvenile onset inset of type 1. Why you're probably asking. It's very simple. I was diagnosed as a juvenile onset and not a type 1. So I don't consider myself a type 1 so I don't call myself one. When I tell people I'm a diabetic I say I am a juvenile onset diabetic. When they ask what is that? I then say, you know it as type 1. When I write about being a diabetic on forums or other blogs, I always put juvenile onset/type 1 diabetic so people know I'm talking about the same disease.

Now off the diabetic wheel.

I was horribly abused by my entire family. You name the abuse I endured it. Why was I the lucky soul to have to put up with the abuse and having juvenile onset diabetes, I have no idea. I didn't talk about my abuse to anybody, so nobody knew about it.
Both my parents were alcoholics, which didn't cause the abuse, only made it worse. My friends did know about the alcoholism. I had friends stay overnight. I would warn them what to expect if they stayed overnight during the wintertime. Most of the time, when friends spent the night, it was during the summertime, when we had our tent put up in our backyard. My friends did not tell their parents about what went on during their stays at night at my house. I had wonderful friends.

I didn't go to the prom because I wasn't going to go if I didn't have anyone to dance with. I wasn't popular with the boys in my class or the class ahead or behind me. I didn't have a boyfriend in high school. Instead of going to the stupid prom my senior year a male friend and myself went to a movie. After the movie, we drove town around with a high beam flash light and flashed it on all the parked cars. That was so much more fun than going to a stupid dance. All my girlfriends told me I'd regret not going to my senior prom. I graduated from high school in 1978 and I still don't regret not going.

I don't use my real name on the internet, I just don't believe in doing that. Also because of my abusive past, I don't trust anyone. I love to read horror, sci-fi, sci-fantasy, paranormal. I also can write romance novels. I had wanted to write horror, but whenever I wrote anything with horror in it, romance cropped in. It was disgusting. So I had to start reading romance to learn how to write it better.

I had a horrible experience with a reverse vanity press. A friend told me about this new publisher so I went with them. This company then did not tell us that they didn't read your manuscripts, they wouldn't edit them. That they would charge exorbitant fees for the books. That they expected YOU the author to do all the work to get the word out about your new print book. They never told you that they were a vanity press.
Several month after I sighed with them, a published author brought to the front how rotten this company was. Unfortunately this company is still up and running and printing books that should never see the light of day. The one good thing is because of the bad press they received, book stores will now longer carry any of these books nor will they purchase any for book signings. The author has to buy them.
If I wouldn't have listened to my friend and waited six months, I could have had my book published by Harlequin. Harlequin had read and rejected my manuscript. In the rejection letter they told me to resubmit it in a six months or a year. I was too impatient.

Thursday, May 18, 2017

Wildcard- Diabetes Bloopers

Whether you or your loved one are newly diagnosed or have been dealing with diabetes for a while, you probably realize that things can (and will) go wrong. But sometimes the things that go wrong aren’t stressful - instead sometimes they are downright funny! Go ahead and share your Diabetes Blooper - your “I can’t believe I did that" moment - your big “D-oh” - and let’s all have a good laugh together!!

I've been reading some of the other bloggers posts and I think why don't I feel, like they do? I've always been an odd duck sort of person. Not just with my diabetes, but life in general. I've never done things the way you're suppose to. As an old boyfriend told me, I love you because you march to the beat of your own drum. You're unique.

So my blooper is going to seem odd to probably most of you. Probably seem scary to a few of you new diabetics and parents too.

But shortly after my Endo switched me from my wonderful N and R to the hateful Lantus and Humalog, instead of having my bedtime shot (I have never used the pens I've always used syringes) had 28 unites of Humalog. OOPS

An hour after the injection, I started going LOW. I took my blood sugar because I was feeling low. My CGM said I was fine. My blood sugar said I was 54. So I thought, did I do what I think I did.

I went into the basement and grabbed 2 cans of real sugar pepsi. I have food allergies where I can't have corn syrup so I have to have soda pop with real sugar in it. I then went into the family room and told my husband my blunder.

I didn't go any lower than the 54 I was and I my highest was 190. I did end up at some point having some Lantus, I don't recall how much or when I had it.

Thursday- What Brings Me Down

May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope?

The biggest problem for me is the stupid CGM. I am one of a few people who the Dexcom G4 which I use, either the receiver or I use the CGM on my Tandem T:Slim G4, doesn't agree with my meter. More often than not, the CGM will be can 50%+/- off from my meter. That is unacceptable. Even 20% isn't good in my book, I don't give a damn what Dexcom says. It should be 10% +/-, not 20%.

And I don't use any medication that will cause problems with my blood sugar reading. I clean my finger tips. I don't calibrate when there are arrows going up or down. There are no problems with my calibrating the CGM, NONE. When the stupid thing beeps at me, it drives me nuts because I then have to go and check my blood sugar because I can't trust what it says. ALL THE TIME. It'll wake me up telling me I'm 60 when I'm really 110. A perfectly acceptable number. Or it'll wake me up telling me I'm 200 when I'm really 125. Or it'll wake me up telling me I'm 45 and I'm really 200. This is UNACCEPTABLE.

I've called Dexcom and they tell me there's nothing they can do. They've sent me new sensors. It doesn't matter where I wear them. I know if I wear them longer than 2 weeks, the readings are even more off. Both my Endo and husband want me to wear the damn thing because I can't tell if I'm going low while I'm sleeping. This isn't a new thing, it's been this way since my diagnosis in 1965. So I wear it and have to put up with the damn beeping. No I can't have it on vibrate because I can't tell when it vibrates.

I cope by not wearing the CGM for a week at a time. I just decide I don't want to wear it so I don't. I can tell when I'm going low during the day, so I don't have to worry about it. This way, I don't have to test as often and I'm not pulling my hair out due to the beeping.

No, I've had more emotional problems due to the physical, emotional, verbal and sexual abuse I've had to endure as a child. That was so much harder on me than being a juvenile onset diabetic.

Wednesday, May 17, 2017

Wednesday-The Blame Game

Having diabetes often makes a visit to the doctor a dreaded experience, as there is invariably bad news of one kind or another. And sometimes the way the doctor talks to you can leave you feeling like you’re at fault. Or maybe you have a fantastic health-care team, but have experienced blame and judgment from someone else in your life – friend, loved one, complete stranger. Think about a particularly bad instance, how that person talked to you, the words they used and the conversation you had. Now, the game part. Let’s turn this around. If you could turn that person into a puppet, what would you have them say that would leave you feeling empowered and good about yourself? Let’s help teach people how to support us, rather than blame us!

Right now I have a wonderful endo. I like her so much that I wish she could be my primary doctor. She listens to me. We have disagreements, but we always talk things over. She doesn't tell me what to do, we discuss things. So I never dread going to see her.

As a matter-of-fact, I just saw her last week. And I had decided to try R in my pump. See I really loved when I was on N and R. I know most people hated those insulins and didn't do very well on them. I never had any problems with them. My A1C's ran from 5.4-7.0 the entire time I was on them.

When I got my endo, after my cancer surgery, she switched me to lantus and humalog because she hated the old insulin and she wanted me on the pump. After almost 3 years of being on lantus and humalog, I still don't like them, so I decided to try R in the pump.

I had it in the pump for two site changes. I discovered that it would have taken me a lot longer than I would have liked to figure out the basal, bolus and the insulin to carbohydrate ratio. So I decided to stick with humalog.

She wasn't upset with me. She said she was surprised it took me this long to try it!

About the only people I've ever had problems with were a couple from an old church. He was a newly diagnosed type 2 and she his wife. She monitored everything he ate. Whenever we'd have a church dinner she'd come to me and see what was on my plate and tell me I couldn't eat that because of my having diabetes like her husband.

Most of the time, I'd ignored her. But one time, after a real bad day, I told her that I'd been a diabetic a lot longer than her husband. And, I was a juvenile onset or type 1 where her husband was a type 2. Those diseases were different. And, while he was on some type of diabetic pill, I was on insulin. I had no complications. Since I had been living with this disease for a lot longer, I knew what I was doing and she should mind her own business.

Tuesday, May 16, 2017

Tuesday-The Cost of a Chronic Illness

Insulin and other diabetes medications and supplies can be costly. Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage. So today, let’s discuss how cost impacts our diabetes care. Do you have advice to share? For those outside the US, is cost a concern? Are there other factors such as accessibility or education that cause barriers to your diabetes care?

I remember when I got married back in 1981. I had been covered by my parents health insurance since my diagnosis in 1965. Then add to that my grandfather, then uncle owned a Drug Store, so I got all my insulin, alcohol, cotton balls, syringes and needles, keto diastix, remember back then WE had no meters to test our blood sugar at home. Or I wasn't allowed one if my parents knew about them. Any way, I got all my supplies at cost, which meant, I got all my supplies for what my grandfather or uncle paid the supplier.

Then I get married. I had to go (note after talking with my husband, he reminded me) SIX months without any insurance coverage. None at all. I hadn't seen my endo since I was 12 or 13, so finding one in my new state and city, wasn't something I planned on doing. I knew I'd have to get a doctor, but I figured I'd wait until I needed one. Back then, a prescription wasn't required for insulin. I had brought several bottles with me, but not enough to last the three months.

That was a little difficult. Being a newly wed, in a new city, a city larger than the one I grew up in. Living in an apartment. Living with someone whose only knowledge about juvenile onset/type 1 diabetes was coming from me. His grandmother had had type 2 diabetes, but I had to keep telling him they weren't the same disease.

I never had any problems in school because of my being a diabetic. When I was in elementary school, the cooks stuck to the diet the dietitian had given my parents. They also gave me the diabetic canned fruits, cakes (made from boxes) and boxed cookies (DISGUSTING).

All the kids thought I was getting special treatment and wanted to eat my special cakes, cookies or fruits. Of course I'd let them. After a while, most of them stopped asking to trade. Every so often one of them would forget and everyone would try to convince them how bad it was. I never said anything because I didn't like that stuff any more than my classmates did.

Everyone in my hometown knew about the girl who was a diabetic. So all my teachers knew about me. I carried life savers in my purse. The nurse in the middle school and high school, told me she had oj. I told her that wouldn't be enough to get me out of an insulin reaction, that is what I called and still do refer to a low blood sugar. She asked me what would work best. I told her some honey, then something to make a sandwich. So she got a jug of honey and had a small loaf of bread, butter and cheese in the nurses refrigerator. I was showed how to get into both of the offices in case she wasn't there. There was only one time in my 8 years of going to the middle and high schools that I had to get the honey and have a sandwich.

For me the biggest problem I have in getting my pump supplies is where my endos office wants me to order my infusion sets. The place is associated with the University of Michigan and in my, not so humble opinion, it SUCKS. They can't seem to get my order right. Next year I don't plan to use them. Thankfully I've never used them to get the Dexcom things.

Last but not least, most of you will not like this. But health insurance is not a right, but a privilege. You are not owed it. You have to pay for it. Even people with jobs do. I do not believe in the government giving away anything, but it's never free. Someone has to pay for it, it's never free.

Monday, May 15, 2017

Diabetic Blog Week- Diabetes and The Unexpected

Diabetes and The Unexpected
Diabetes can sometimes seem to play by a rulebook that makes no sense, tossing out unexpected challenges at random. What are your best tips for being prepared when the unexpected happens? Or, take this topic another way and tell us about some good things diabetes has brought into your, or your loved one’s, life that you never could have expected?

In reality you can't expect diabetes to play by any sort of rule book. You can do everything YOU know is right and still things can and will go wrong. You can count your carbohydrates and have the correct amount of insulin and... BOOM you're either going sky high or dropping like a lead balloon. AND you don't know why. You can scream at your pump, your pen or your syringe. Scream at yourself. Scream at the moon for all that it'll do.

There will just be days where no matter what you do, nothing is right. You just have to accept the fact that there will be days like that. You learn, going on 52 years for me, that sometimes diabetes just doesn't play fair.

All I can say is, don't beat yourself when it happens. Just calm yourself down. Know that it happens to all of us. Even those of us who have been at it for probably longer than you've been alive

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