It Looked Good in the Beginning

I started a new job back in May and have been thinking the insurance is on par with my former insurance. I have just changed my mind as of Friday. Here’s the scoop on the new issue.

I have not been able to use my Dexcom G5 system since the transmitter died back in June. I got past my prescription deductible in the first month. The only benefit of sky high insulin prices. After that first $500 dollars things fell to $71 to $74 dollars twice a month for the one insulin and $35 for the other once a month insulin. That is not how often I take just how often I have to refill them. Test strip are only $15 every 2 weeks.

The Dexcom is a different beast altogether. Although you need a prescription to get it, it does not fall under the prescription plan. They call it a durable medical device. That moves it off the drug list and onto your medical insurance. Like a doctor visit or ER visit or like the rotator cuff surgery I will need next year after I’m qualified for FMLA (if we still have by then, Lord knows with the current administration’s hurry to get rid of all thing hurtful to corporations). So that means I have to meet the $750 deductible for the health side now.

The transmitters cost roughly $1000 each and they last for 3 months. The company I go through for them checked and came back with these amounts. The transmitter will run me $760. The $750 deductible and then $10 which is 20% of what is left over. The sensors for this are $528 a month so that will not even reach my deductible. If I wanted to get a 3 month supply to match the transmitter life I will end paying $928. That is with the $750 deductible cost added in. Last time I got a 3 month supply with former insurance it was $135 for both transmitter and 3 months of sensors.

What does this mean? It means until next year sometime I will not be able to afford getting these supplies. It looked great on paper to start with but the fine print will get you every time.

My old insurance  was all pressed into one deductible. This one has 2 deductibles which total $1,1250. I’d like to get the universal insurance plan please. It comes out of the check as a tax so it does not get included on income tax. The biggest benefit is with a one payer system it is all or nothing for companies. Insulin has been at the top of the list for diabetics for many years as far as a large financial concern. There will be a price control on drug prices instead of letting them charge whatever they want. It is why diabetics are dying, the insulin they need to survive is just too expensive because of lack of controls.

Now there are those who have been touting the Walmart $25 insulin (NPH generic version of very old insulin) as the fix for those of us who can’t afford it. It is so old you don’t even need a prescription to get it. Sadly I talked with a guy on Facebook who gets this and it works great for him. He’s a type 2 diabetic who does not need short or rapid acting insulin. Type1 diabetics can not live without the shorter term insulins to bolus at meals and then the long acting insulin for background control. The one and only $25 insulin will not help us. We still need to get a prescription from our doctors (an office visit to pay for) and a much more expensive analog insulin which requires a prescription in all 50 states.

I make pretty good money at my job but house, gas to drive 75 miles a day to and from work, maintenance on said truck (yes truck that is 4 wheel drive for winter, it snows here), food and most of all the medical costs are still making it hard to do anything else.

Its just another frustrating day in the life a diabetic. My life is actually pretty good compared to others who are not as fortunate. It is just hat as soon as I think I am getting ahead I seem to fall farther behind. The meter is not a life threatening have to have device. I lived for many decades without and can do it again. It just makes life a little more sure and stable. I have had issues with lows and not being able to feel them until hey were too low. I liked being able to see at a glance if my sugar is right or not.

Brings up another issue from a while ago. I got into a discussion with a guy who felt that A1C should no longer be used as an average sugar level indicator. I’ll give it to him it is not a direct measure nor absolutely correct system. He was pushing for using CGM (Dexcom) data. It is much better at indicating blood sugar was his argument. My response it that it is neither a direct or accurate measure of sugar levels either. It does not measure blood sugar levels but intertissual fluid sugar levels which are “related” to blood sugar levels. He said the muscles are powered form the sugar levels in the intertissual fluid anyway. I gave up at that point as nothing I could find pointed in that direction. lol He kept telling me to Google it. I was. Neither way is a prefect measure of actual blood sugars and both have pluses and minuses. He had a chart that was supposed to show how CGM was so much better than A1C but would not reveal where he got it from.

CGM is nice but not needed. Only some have access to it and it is not much if any better than the older A1C tests done in every endo office I’ve been in. You do what you have to get the best control you can get.


When Giving Advice

I’ve been reading post on twitter for a while now. A lot currently are on political issues. I kind of take these on a side note. They are people opinions of the facts they are presented and most of all believe and trust. The election and subsequent statements in speeches and on twitter are a good point. Some believe the president’s points and other do not. I’m not here to chat about those problems though. My issue is the diabetic on diabetic degradation and giving advice and the seeming hurt feeling when someone doesn’t accept it. This may seem a little blunt but get over it. I’ve both given and taken advice from more people than I can possibly remember. There are two things one needs to keep in mind when either giving are receiving this advice.

First, you must remember that everyone is not created equal. Therefore, what works for one does not necessarily work for all. It may work but not as well. Take the advice and decide if you want to try it or not. Does it seem to fit your lifestyle? Does the science seem sound? OK science is the same for everyone but do the facts seem to agree with what you know? Can a diet cure a genetic issue? What I know of, it does not. Are you willing to try it and experiment with it to see if it is a fit for you? I have heard so much on cutting back carbs to prevent needing more insulin instead of rationing your supplies or to stabilize your sugar levels. If you cut back on carbs can you sustain your lifestyle? I work hard and on an average day will consume about 3400 calories. That is more than twice the amount most people I talk either do or will admit to eating. I used to eat about 4100 when I was younger and more active. I looked at a few sites for average calorie intake and was very surprised. One stated men could eat about 2200 a day and maintain their weight. Almost all the ones after adding the words diabetic to calories intake said from 1200 to 1800 calories a day. 50% of those calories should be from carbs. The math came out to 195 grams a day. I eat about 280 grams a day and have not lost or gained much in about 20 years. SO I consider myself maintaining my weight at 3400 calories a day and 280 grams of carbs each day. Low carb? What I can see tells me it just is not a sustainable issue for me. Will I loose weight? Oh without a doubt. Problem is what happens when your body gets a point where you have little to no fat left? Most people call it starvation. Your body will start to consume its own muscle to power itself. My point is that I could loose weight by going on one of these diet but I will need to come back off of it when I reach my goal. It is not a lifetime permanent diet for me. A metabolic endocrinologist told me during a consultation that a ketogenic diet was not a good fit for me since I was so active. It was more for office people than factory floor workers.

And most of all, if you are the one giving any advice, don’t get upset if the person says they aren’t going to try it or posts a different opinion on the subject. God gave us all free will to decide our own fate and it just seems wrong for man to try and take that power from us. Even if you firmly believe the person is wrong and will do damage to themselves, all you can do is try and give reasons to support your point of view. PLEASE do not stoop to name calling or other bullying tactics. It shows a grand display of insecurity about your own point of view. When I get it, I really take a good look at what was posted because I am immediately suspicious. I get a big kick out of someone who says “you should read this article it says (blank) and proves my point”. I read the mentioned article and low and behold it does say what they say it does. It also goes on to mention other issues that need to be looked at for it to work as well. One of the biggest offenders of this are articles on cures for diabetes. One if I have to change your lifestyle to prevent needing insulin I can’t call it a cure since the cause is still there. I am simply treating the symptom with a diet change or exercise change. If I stop, I go right back to where I was. As for the article itself, quite a few times somewhere in the article it actually says not tested on type 1 or not recommended for type 1 diabetes. IF your type 2 then by all means I do hope it works for you but I am not type 2 so it is not likely to give me the same results. I tolerate people who do not agree with me on a variety of subjects nor do I try to force them to adopt my views. Someone telling me I’m wrong and should be doing things their ways to live better is not going to earn them any points in my book. Will I listen? Of course. From my point in life I have this to say. A wise man is quiet and listens to everything said, a fool keeps talking to make his point heard. Listen to what the other person is saying, don’t just ignore them all together. On the other side of that is that you do not have to follow their advice. Take or leave it is commonly said in these situations. It fits perfectly.

And the Costs Go Up

Its been a while since I posted a blog. I don’t write until something hits me as needing to be said. Found one. The rising cost of medical care. Congress and the president have talked about taking it to task to fix these issues for us. Still waiting. Why has the cost gone up so far so fast? I’ve been reading lots of posts on both Twitter and Facebook talking about rising cost and some not being able to afford the medication they need to live.  Why? I can’t afford to spend the $2,000  to $3,000 for a couple months supply of insulin and I’m just starting to make good money.

It’s not like these drug companies are not making a profit. Novo Nordisc made several billion dollars in 2015. I think that was the year I looked at a while ago. Sadly they made about a few million less from us than the rest of the world all together. I think profit has a lot to do with the price increases. A chart I read in a Wall Street Journal article says med prices went up 69% since 2000. The drug pricing process is so confusing and oblique, finding a source for the increase is very hard. Many states have started enacting laws that while not controlling the prices but open the doors to see why the increases are happening.

A few months ago there was a news blip about companies freezing prices instead of increasing them like normal. An article I read claimed the freeze was only for low market use drugs (more popular drugs still got the increases) and there was no indication it would last. In other words it sounded like to placate the people and get us off their case, they postponed the increase until we calmed down again.

Insulin is my drug of choice so I use it often to show the increases and the effects of them on my life. I started on NPH back in 1977 when I first became a diabetic. According to research I’ve done it was about $35 a bottle (10ml). Currently I’m taking Novolin N which is the same basic biosimilar formulation but different company. There has ben little to no improvement in over 40 years to this insulin. Even the regular Novolog I take now has not been extravagantly advanced in many years. Newer insulins are faster but the older ones don’t really change much. Its why I’m on them, they should be cheaper. So one would think. Reality is they are not much different. Last time I asked about it at pharmacy here was a difference of about $20 between older insulin and newer one I had been on.

I asked to switch years ago due to money issues to a cheaper fast acting insulin. My cost dropped from about $115 a bottle down to $60- $70 per bottle. Biosimilar (means the same formula really) products now-a-day are about $294 a bottle. How did it go up without a significant change? Still kicks in in about 30 to 90 minutes and last around 4 hours. Newer insulins kick in about 15 minutes and only last 3 hours. That is not a huge change but I’d give that a thumbs up for a price bump at least.

The long term insulins? Those are even worse in my book. Lantus is a long acting (24 hour) insulin that has been around for years. An article I read claimed that its patents was set to run out a year or two ago. I’ve never really checked into that. I got put on Toujeo a few years ago shortly after it came out. “It will be so much better for you.” I was told by my doctor. Well it was not. I read the information the company put out on it since it was supposed to be so new, only out for a few months when I was put on it. Come to find out Toujeo is actually a new formulation of Lantus. It will last in your body 36 hours according to the literature on it. 36 hours? Why? I still have to take it every 24 hours so I’m not gaining anything by switching other than a more costly insulin. The best part was I also read that since it was similar to Lantus the patent on Lantus was extended. No generic insulin then. It sure sounds like a profit boosting measure to me.

Another area that seems to be boosting prices is the lack of competition. Lack of competition? This is America were we can innovate out of anything. The corporations are really good at it. When people here started realizing that the same meds here are only a fraction the cost in other countries they began ordering them through the mail. A law was put on the books to stop that once it impacted the drug makers profits. Instead of opening up competition they capped the market to prevent having to compete and lower the prices here in the USA. The same insulin people get for $150 a bottle here are only about $9 in the UK and $2 in India. WTH? Same drugs made by the same company are so much cheaper there. Why? Those countries have a universal system that has the government as the health insurance provider. If you want to sell your drug there you have to negotiate a reasonable price for it or you don’t sell it at all. They would rather have a smaller profit than no profit. And yes they still show a profit in those countries even with such low prices. Huh.

The USA has an average price tag of over $8,000 per person in medical costs. The next one down the list was about $5,000. lol Even better that country had a longer life expectancy than we do. Less money and better care than we have. We should be paying more attention and less money.

Are We Being Forced to Use New and Improved?

I responded to a tweet earlier that me think about my answer and a need to talk farther about it. A woman asked what was going to happen when diabetics started using the older  less improved insulins? It’s a solid question and I can give an answer at this point because of this exact thing happening to me.

As followers might know, I was asked to try a 670G pump and it did not work out as was hoped. When it was over, I wanted to go back to injecting insulin and my endocrinologist at the time stopped pushing to stay on it and accepted my decision to get off the pump. That’s were our worlds separated.

She talked about me going on to using a newer insulin, Tresiba, as my basal insulin. Now to those who do not know about it, Tresiba is a long acting insulin that by the makers information can last in the body for about 42 hours, about 1 3/4 days. My question is why does it need to last that long if you take it every day? Wouldn’t you slowly build it up, or stack it being the term for this, over time?

My biggest issue was not to be asked, but being placed on it again after its lack of benefit the LAST time I was on it. She had said try a new insulin but we had tried this one before I been placed on the pump to see if it could improve my A1C numbers. I had been given a sample to use to see if it made a change.

I had been on Toujeo for a while and since starting at 24 unit a day was down to 4 units a day as which was still making my levels drop while at work still. Yes I was taking 20 units less in the end as it was dropping my blood sugars too low while at work overnight. My morning levels however where very high. Some of that has to do with me eating to stop the lows and over compensating. The doctor did not understand why I was still dropping with such a small amount in my system. This was not supposed to happen.

When she brought up going to this “new” insulin she wanted to start at 22 units a day. If she had actually looked at my charts, it was in there that I had been down to 4 units of Toujeo and I’m hoping there was some note of using the Tresiba as well. Regardless, I pointed out we had already tried this and did not want to try another 24 hour insulin as it “locked” you into one dose all day. NPH seemed to be a better fit as it was only 12 hours and would let us switch from  lower dose at night to a higher dose in the morning when I needed more help. This made sense to me but apparently not to her.

All kinds of excuses were given, forgetting and going into ketoacidosis being the most pushed fear of hers. I could not help but feel a little uneasy as it seemed she was fighting too hard to stop me from using a much older and most likely less pharma pushed insulin. NPH has been out there for decades as Toujeo and Tresiba are very new, about one year at this point. Back hen I think Toujeo had only been out for a few months and Tresiba was not even through the FDA trials yet.

I found it very hard to ignore the voice in my mind telling me there was something not right with this. After arguing for over a week about it, I grabbed a 4 year old bottle of NPH I had in the fridge from a past prescription and started using it. She was so mad I had done that but immediately got on board and we started making changes to doses and working out how this was going to work.

My point is, why was it so hard for her to get on this new train that would let me follow the pump rates closer? The only thing my mind came up with was kickbacks from big pharma. Give out our insulin and we’ll give you something. Maybe there was nothing to fuel her determination to keep on the pump when it obviously was not working for me and then fight to go back to same insulin that I had such poor performance from that led her to press me for trying the pump, again. But that idea is hard to ignore with all the posts about on Twitter and in the news.

The rising cost of the newer insulins and people going back to older insulins because of this only lead me think this will end in one of two fashions. Either they will raise prices for these older insulins or they will stop producing them altogether to force people to buy the more expensive ones.

The first reason is actually already happening. The cost of the NPH was only about $200 when I started back then. I was forced to switch to Novolin N which is a biosimilar made by Novo Nordisk by my insurance company. It was only a $40 copay at first but became a $65 copay by the time I switched insurance by switching employers. Let’s do the math on that 20% copay. A $40 copay means a price of $200. A $65 copay means a price of about $320. A $120 jump in price in a little over a year. I heard of people on twitter and Facebook switching to keep cost down and look what is already happening to the pricing. There has been no improvement in this insulin in over 30 years. I used NPH in the late 1970s when I first became a diabetic.

Are there kickbacks for doctors to keep people on the newer meds and technology to control diabetes? I don’t know. I’m not a doctor. We will die without these meds and the technology will help us keep tighter controls to avoid later costly complications. I can only tell you what my opinion is, which comes from what I see, hear, and experience. The prices of even much older insulins is going higher fast. Research can’t be used as an excuse since it is so old the research cost has to have been recovered by now. Again, I don’t know but I have think it must have after that length of time. How could it not? It would be a poor business plan to run that cost out too far and risk loosing it due to newer meds that will replace it.

A co-worker once gave me a great piece of advice, the doctor works for you not you for them. If they give a treatment that does not work for you or you know you can’t afford it tell them and work with them to get to a more affordable treatment. I do pay them and quite well I must add. I will listen but they must listen as well. Another doctor once told me that would have to stay off my foot after an injury for about 2 weeks. I simply told him that I did not have any vacation to cover that and would loose my job and insurance if I had to be off that long. He did not look happy but agreed to let me go back to work as long as after work I wore a boot on the foot. I did and work went great. I had already been working on that foot at work for 3 weeks so its not going to make anything worse. lol

The Same Yet Different

I just read a post from a woman who lives in the UK. She is also a diabetic as are many of the people I follow on twitter. Facebook is great for friends and such but twitter lets me find people who are like minded as far as my disease. Well I don’t go looking for them, Twitter finds them for me. I have some here in the States (one is on TWO of the new Dexcom G6 commercials) but quite a few are in the UK as well. I have learned as much from them as fellow diabetics here in the USDA.

The post I read was from a woman who yesterday ran a half marathon (10k) and finished it. Way to go!! Now some not familiar with diabetes may think so what. It’s only a half marathon and she didn’t finish first. Oh my good people, to me it is great that she even tried let alone did finish no matter what place it was.

Why? A diabetic knows the answer to that already, someone not so in touch with the problems of this disease may not. Let’s start with the basics. Diabetes is a disease where your body does not produce insulin to control your sugar levels in the blood. So a diabetic must double as their own pancreas since the one they were born with no longer works like it should. Normal people don’t get this as their body regulates it’s own insulin level. A diabetic has to do this the entire 24 hours of each day. It is a true 24 hour 7 day a week jobs and there are no vacation from this job. Now here is the first in lessons some don’t know. There are actually 2 types of diabetes and although they are both called diabetes they are very different creatures. Type 1 is insulin dependent and type 2 can still make it although not enough or sometimes the wrong chemical makeup, it doesn’t work right. There about 22 million diabetics here in the USA alone and out of those only a 10% section are type 1. That means I am one of about 2.2 million people here in the USA who depend on insulin to live. We do not make it on our own and so must take it several times each day. It is not a pill and though there has been some headway to make it easier, the only way to get it is to inject it through the skin.

“I’ve read that you can also inhale insulin.” There is only one and I do not know what complications it can cause or how effective it is. Most people, I do not know of any on this inhalable insulin, use injection. You can use pumps instead of needles but as some of my former coworkers can attest to, it is not a perfect solution. It also still goes through the skin. I was told years ago (decades really, I’m polishing my cane later) being a hormone insulin would not survive the human digestive tract hence it must be injected. As far as inhaling, I’d be more scared of an infection from that kind of delivery than an injection. In the 40+ plus years the only infection from insulin I’ve had is with a pump cannulas but it was on its 6th day instead of the 3 days recommended by the maker. I had to, sweated the first one off early so to make up I had to reuse the next one or I would have run out.

OK back to task, Type 2 diabetics are people whose body still makes insulin but it either makes not enough or the chemical makeup is not right and it does work as needed. Insulin does not actually control blood sugar but it unlocks the walls of cells so the sugar can get in and let the cell use it for energy. Think of it as a key for the lock on your cell wall door. If there is no key you don’t get in, if you don’t get in there is no power to run the cell and it will die. Type 2 can be controlled by pills or diet or both without needing insulin. Sadly, it can regress to the point where insulin may be needed anyway. My mom and both aunts where like after years with type 2.

Emma uses a pump and just to make things easier I will just say that if you have a hard time programming your universal remote a pump is not any easier and your remote won’t kill you if you screw it up. I don’t know her that well but I can guess from her post she does not run marathons on a daily basis. Here is another issue with diabetes, changing your routine is scary. I am far from a perfect diabetic but I try to eat at the same times and even the same foods on a rotating basis so I know how I react to each food and how many carbs are in each meal. Carbs are how diabetics count and calculate how much insulin they need for the food they eat. Each food has a certain amount of carbs that enter your body at different speeds and as a diabetic you need to be able to know how many are in each food and add them together and then calculate how many units of insulin you need. A pump can do this on its own but you still need to tell it how many carbs you are eating.

Since she was running a marathon her activity level was going to be so much higher than normal for her so she had to try and compensate for this. With a pump you can lower the background insulin you get on a temporary basis so she made the changes.

This where I noticed the biggest difference. She dropped her rate 2 units. Wow! My basal rate (background insulin) was at times only 0.250 units per hour! That equals 1 unit every 4 hours. There was no way I could have dropped it 2 units. Even as low as it was set, it still crashed my sugar level without extra work (running a marathon being as low as it can get on that list) and although it would shut off automatically,  I still needed to eat to bring it back up as it was low for hours after going low.

The other issue I noticed was when she described making corrections for a highs the morning of the race. Every diabetic has a rate to add extra units to prevent a high once it is started. Mine is 1 unit for every 50 points over 200. It used to be 2 unit back then when I was on the pump. She was correcting a 1/2 unit for less than 200. Amazing!

Reading about how she ran her diabetes compared to my treatment brought to mind what I frequently tell other diabetics. Everyone is different and has a different treatment routine. I have been telling people that for years now but I never had actually applied it to myself until reading that post. I had always thought I must have done or been doing something wrong to create this difference. I am me. I am not Molly, I am not Emma, I am not Amy, I am not any of the other diabetics I know.

I am not doing anything wrong I am merely doing things the way that works for me. MY correction rate works for me. My basal rates, well now doses, works for me. My diet works for me. It will not work for anyone else nor should it. I can try a technique I hear from someone but I will also need to test it to see if it will really work for me.

I can stop thinking “Why does this not work for me like others?” We, the other 2.2 million type 1 diabetics, have the same disease and share common problems and issues. Our solutions though are not and should be the same. They are unique to that person. Everyone is different and should follow their won path to control.

Paying More With Insurance?

Just made an observation at the pharmacy the other day. It was the first time it had to buy insulin without insurance after switching jobs. Back in January when I had the insurance discount it was $295 for one bottle. Thursday the same bottle minus the insurance “discount” was $272 for the same bottle. So the difference is $23 a bottle LESS without insurance before the copay kicked in. I’m actually a little relieved as I’ve been hearing from other diabetics online that they pay as much as $380 a bottle for Humolog, an Eli Lilly insulin. I was FORCED by the insurance to switch to Novlog which is a very similar substitute made by Novo Nordisk, a Danish company. It just struck me as odd that the “discounts” talked about by insurance companies actually cost me an EXTRA $46 back in Jan (2 bottles). Granted I’d much rather pay the 20% copay which ends up at $65 a bottle. New insurance copay is higher, It’s either going to be 25% or 40% depending on how they catagorize the insulin, formulary or non-formulary.
Why do I bring this up? I read last week or earlier this week Trump was trying to get Canada to raise the price it pays for meds to lower USA prices. Huh? I’ve looked at Novo Nordisk and a while ago at Eli Lilly financial staements (publicly traded companies so those are online). Novo made $17.4 Bilion last year. In their statement diabetic meds make up about 81% of their sales world wide and the USA makes up 52% of the sales worldwide.
What made me look twice at it was that they list 2 sales regions, North American and International. Its obvious that the USA, Mexico and Canada are the North American region unless they have a different map than mine. Total sales in those 3 countries was about $9.1 billion and the REST of the world was only $8.4 billion. 3 countries had more money in sales than the other 188 countries they serve (190 in all according to them). Trump wants the one of other countries in our region to raise the profits for a company that makes over a billion more from us already? It does not makes sense to me other than more of my money going to keeping me alive, hence calling us a captive audience in this story. The companies will not reveal how much it costs to make any of the meds but they are required to list sales and cost of goods. Sales last year was again $17.4 billion and cost of goods was only $2.8 billion. So making the goods cost them less than $3 billion but they charged more than $17 billion for them. That means that there was about $15 BILLION more made than spent on these meds.
An insulin that is sold for $150 here in the states is sold for only $9 in the UK and only $2 in India (going off memory here so not sure if I have the right price with right country). They are still making a profit off it.
The argument that it will cut into research money is also not completely true. It will reduce the amount but if it is focused into the right areas it would help. Why create an insulin that is touted to stay in your system for 36 hours but you are still made to take it every 24 or once a day just like the other insulins? What is the advantage? That same insulin is also a newer version of an older insulin that would have lost its patent protection, gone generic, if not for them changing the chemical makeup enough to keep both the new and old under a new 20 year patent. They only spent $2.2 billion, 12.5 % of their sales, on research. Those are their listed numbers.
We need to have the government step in and do something to stop the price gouging going on in our health care system. People wanted it when gas was so high but this does not affect everyone like gas prices do, just us with chronic life threatening conditions.Trying to make other countries pay more for the same meds is not the way. I’m not a business genius but if everyone started paying more the only outcome I can see is deeper pockets to throw money at congress to get more corporate control in there.
I know a lot of people hate to see more about universal healthcare but it works for other countries. Make it a universal tax like Medicare, which we will not have anymore. Why would we? If there was a universal system in place, everyone with an income would be putting into it and getting out of it. You would think corporations would be on board for this system as they wouldn’t have to split the cost anymore. The amount of money saved could go into pay raises for the CEO or board members. The last tax break didn’t increase my income much if any. The only reason I can say my wages went up is I switched employers. Last year my weekly take home was about $415 a week and in January without overtime it was about $423. In 8 months I’ll have an extra tank of gas at current prices. Welfare, disability, social security, unemployment, and any other income would have the tax on it. My current situation would not be happening. I lost my insurance when switching jobs. A universal system you wouldn’t lose it going from one job to another. You wouldn’t lose getting laid off. I have not heard of any annual restart dates where you end up going back to deductibles or having high out of pocket expenses. Being a working class guy, I would want this system just for the fact of having a security blanket that is with you anywhere at anytime. No out of network worries or coming up with a copay to see the doctor. I just had another MRI done to be sure the “nodule” in my lung had not grown or moved. Haven’t seen the bill from the hospital yet but it will be around $170 plus the $18 bill I just got since the radiologist who looks at the film is not in the network. $18 dollars for a few minutes work.  I’ll have another one coming in another 6 months. My new job is going to be shut down in about 2 weeks for a planned upgrade/refit. I will once again be without insurance. It makes me wonder at times if the universe really hates me or just doesn’t care whether I live or not. Most of the time I go for the former but there are times that it seems like the latter.

Showing Signs

Every year I add another birthday to the list. This last March I had my 24th 25th birthday. Yes. I am still 25 but I’ve had it 24 times (I’m not doing the math I don’t think my calculator goes that high 24+25). I also quit using the term celebrate, for two reasons.

First, there is no celebration, party or even special dinner. I try to get that day off work but it is not must have. Most people don’t know it’s there until someone posts about it. By the way, the day listed on my Facebook page is not true. It is in March but it is not the 1st. I don’t want people knowing what day it is. It really irritates me when employers feel it necessary to display my personal information on public boards. I asked to have it removed once and was told they couldn’t do it since they would have to change something in the computer (I think it was a program that automatically grabbed the information). I could have gone to court to have it removed, it is MY information anyway, but decided against it since it would only have added to the unwanted publicity.

Second, why would I celebrate getting older? When you are young, you enjoy getting older. You get old enough to drive, to vote, and to drink. When you get up there far enough it’s like whoa, slow down Nelly. I am loath to admit it but I am no longer as fast, strong, or active as I once was. Goin off 4 hours of sleep does not work well for me anymore.

Now there are advantages of reaching this point in life. My knowledge has grown with everything else. I know when to just sit back and not get excited about things, they will even out later. I know enough to pick my battles as I can’t win them all. I have so many job skills it is almost scary, I’ve been a railroad laborer, I’ve been a machinist, I’ve worked in a plastic conduit factory, I’ve worked in several different health care positions (both physical disability and mental health issues), and many factory positions just to name some of them. I get board easy so I like to move around when something gets to be routine. The other issue is that I can remember a lot about each job to quickly get back into it.

The down sides I have already talked about. I am no longer as strong as I once was. My mind tells me I can get back there if I work hard enough. My body give me an argument every time. I have been, still am, and always will be a believer in the human body’s ability to adapt and over come obstacles in life. It’s how body builders gain such size and strength. If you push the body to its breaking point, it grow back tougher and stronger than it was before. I believe it happens for both physical and mental aspects of life. After my shoulder surgery, they told me I may never be able to do a flat bench press again. Ha, ha, ha. Never tell me there is something I can’t do. A year and a half later, I was pushing 300 pounds for a max. I also got back to work in only 2 1/2 months. The doctor said it would be 3 months or maybe 6 months since I was a diabetic. I’d be lucky to get 190 up now I think. I have forgotten what the inside of the gym looks like anymore.

Speed is another down siding piece of my life. I was fairly fast in high school, for my size. I’ve always been big, broad shoulders and solid build. I never had to be fast as with that size as I didn’t bug me to get hit. I didn’t go looking for fights. My dad would have kicked my ass if I had. He had a short temper and I pushed it too far more than just once. I have inherited more than just my lack of model looks from him. I feel I have a better control of it though. I don’t beat on other people. I take it out on objects instead. This is going off on a tangent but this is why I fear a low so bad. I DO NOT want to be like my dad. When my sugar is low I get very combative and aggressive, kind of like dad. Like to think I have grown up better than that. Back to task, I am no longer as fast as I was back then either. Age has slowed not just the muscles but the response time as well. When I worked at a health care facility I was on a home with people who were very high functioning. They could eat on their own, go to the bathroom on their own, even do their own laundry with prompting. When they went off it was epic. Thrown chairs, phones, punched TV screens, and of course inanimate object were not the only thing they went after. It helped being fast and strong to deal with that kind of thing, ducking a punch or grabbing an arm before it hit someone else. It’s as much being able to talk to them and calm them as doing a take down. They will tell you that being calm yourself will help calm them down, it is not a lie. Knowing I could deal with almost anything that came my way helped keep me calm. I couldn’t do that anymore I believe.

As much as I’d like to believe it isn’t true, a person goes down hill later in life. You can’t stop it but you my be able to slow it down with practice and exercises but it will happen. Just a few years ago I was able to get by on just 3 hours of sleep, but now if it is less than 5 I get worn down. Having been a diabetic for nearly 41 years has only added to all the normal old age issues, joints going bad, eyes getting bad, and metabolism slowing down. That last one is one that may actually be a bonus. I have for many years now believed that my metabolism is higher or at least more reactive than most people. If I sit down my blood sugar spikes and when I start doing things again it drops. If it slows through aging will it magically level out? One can only hope.

One of the things I’ve heard people comment on with getting old is that you come into this world naked and helpless and that is how you go back out. Not the most politically correct terms but it is mostly true. After a certain age you starting loosing the skills and abilities you need to survive in this world. I am so looking forward to this, not. I’ve learned to be a fighter. I’ve learned to work hard to survive, all diabetics have to. I will tweak my life as I need to continue to live but there will come a point when it just will not work anymore. That does not mean I’m going to roll over and quit. Ever.

Confidence or Arrogance?

This one came to me on the drive home this morning. It is almost an hour drive so I had some spare time. When does confidence become arrogance? I know quite a few people in both clubs. I love people with confidence but can’t stand those with arrogance. The question is what is or how do you define the line between them. This post is MY definition and opinion on it.

Confidence. A simple word that bring it out in others. I like a person who knows they can do something but doesn’t rub it in your face or use it to make you feel less than human. It makes me more willing to give my idea also. The catch here is making you feel less than human. How? I can take it if someone comes along and is better at something than I am. It makes me work harder than hell to reach that level. If they take it farther I start to have issues. Does it seem like they are gloating over you by doing it? Are they trying to break your spirit by constantly bringing it up or holding it over you? It comes down to your opinion of what they are saying or doing as much as a definition in a book.

Confidence – being self assured of your own ability or talent for doing something. Playing football, working as a engineer, or just hanging with friends (it is doing something and not everyone can do it well). Doctors, nurses, and diabetic educators can easily fall into this catagory. They have vast knowledge of this disease and access to the lastest techniques and gadgets to treat it. My tell is their listening skills. I hate to sit in a room with one decribing a recent issue or a concern and feel like I am talking to the wall behind them. Yes my sugar was high here but if you look back just an hour earlier it was going low so I tooks some carbs to bring it up.

It gets really annoying when the next question is “Why didn’t you bolus for those carbs?” I just pause for a moment and stare back. Why say anymore? They obviously didn’t just hear me when I said it was going low just an hour earlier. Then my inner ass comes out to play. Me “Why would I bolus when I’m trying to raise my sugar?” Her “80 is not low yet. You don’t need to bolus.” Me “At 80 I get confused and can no longer function well.” Her “Its just because you are used to it being high. Normal doesn’t feel right anymore.”

That conversation actually happened. It may not be exactly word for word but the content is very similar. She was right about that last point though. Normal to me is not what others feel is normal. I told her that the first day we met in her office. “I’m not normal.” Plain and simple I am not, normal is not the way my life works. I can do double digit multiplication in my head most of the time but if my sugar drops below 80-85 I have trouble with even single digit multiplication. I start to second guess any decisions I need make. What I can normally do in less than a mintue now takes better than 15 minutes.

It has now become arrogance in that she feels she knows better than I what is going on and is trying to tell me how I SHOULD feel not asking how I do or did feel. She told me I wasn’t feeling a low. What about the confusion? What about the fatique? Arrogant is when someone has or reveals an exaggerated sense of their own abilities or importance. I know way too many people that fit in this catagory. Tricky part is they don’t always fit in there. Some days they are just confident and others they turn arrogant. What I got out of that conversation was “I’m a doctor just do what I say!”

As many people don’t know all the facts about the subject rather than actually know better but send you on a goose chase for the “magic” cure or treatment. 40+ years in and I have heard most of them but I can always listen to another. There may actually be some truth to it. Garlic does actually help with insulin effectiveness. Chomium is another mineral that increases insulin’s effectiveness. Think of it was a lubricant for the key (insulin) to fit into the lock (cell wall). There are others out there, some I’ve not heard of yet, which is why I always listen but don’t always follow the line of thought all the way through. I understand the science of it also. It is not magic, just science I didn’t understand that in the beginning.

I would be shocked if there is no one who sees me as arrogant at times and it is OK. I get it. As much as I see someone being arrogant with me when they really aren’t or least aren’t with everyone else. Here’s a nother big word for everyone. Perception. It’s how people see things. It is neither right nor wrong just how we see it. Optical illusions depend on percption errors to work. Our sight is working just fine, its our minds that get tricked or bent into believing they are looking at something that is not there.

My last opinion on this issue is that there are those that flat don’t care and seem to go out of their way to be arrogant. Its one of polar opposite issues. If a person comes off as overly dominant then they are most likely to have an insecurity issue. I see arrogance as a dominance issue. Someone is trying to be bigger and badder than you at something. I learned a long time ago, there is ALWAYS someone on the planet who is bigger, smarter, faster, or more of a badass than you think you are. Keep that in mind always.

Making decisions for me

I just got done posting something along these lines on Facebook. I read a post that struck a cord with me. It was about not making decision to make others happy but to make yourself happy instead. I feel that comment strongly represents my outlook on life currently.

Why? I came to the conclusion a while ago that there is no one out there looking after me but me. So many decision I’ve made in the past have to help others or my workplace out. Can you work this day? Can you help me move this furniture? Can you tow my car/truck? Can you help fix this or that?

Don’t get me wrong, I’ll help out the next guy (or girl) if I can but do not look at me with an evil eye if I say no. I’m not here on earth to make everyone else happy. Be it work, my health, my finances, or anyting else in my world it has to work for me whether others are happy about it or not.

In the past I have been for the most part silent when moved from place to place at work or asked to do extra tasks. In several jobs I have been cross trained in different duties because I pick things up quick. At a lawn mower manufacturer, I ended up cross trained on almost everything but welding. I worked in receiving, shipping, line material handler. parts picking, assmebly, weld parts picking, and was willing to do the other chores that got added over time. The breaking point was when they started to lay us off for months at time instead of only 2 weeks each year. I can not go without that insurance so I found another job and quit.

In my current job, I started as a material handler but was apparently not very good at as I was alwasy getting told all the mistakes I was making but never if I was doing anything right. OK it took me almost 3 years to earn a spot as a machinst but apparently I was not very good  it either. Always heard “you need to work faster” or “do we need to retrain you” so I must not have been very good at it. Funniest part was my coworkers thought I was doing a good job, it stopped there though. I found another position about a year later but even though it was going back the same job description I had before, material handler, I was demoted and had my pay cut but I was happier there so I took the position. Then just a few months ago I was forced into a position I had been cross trained in. When asked when I woud be able to go back to clearing tables I was told it was going to be permenant. Sadest part of it was I really liked clearing the tables. It was hard work, I think that is what I actually liked most about it but no one else seems to.

My solution was to ramp up my search for a new job. I had been looking since I reallized things were not going to get better in the machine shop years ago. I’m giving up 4 1/2 years of seniority and decent vacation but that senority does not seem to mean much since I was the one forced into a position I did not want. I had been told a few times that I was good and people seemed to request me to do these many different things because of that. Now I am stuck in a postion that I am happy to fill in on temp basis but it is not temporary change.

I can’t stop there. Work is not the only place I have made my own decisions which do not always agree with those around me. My healthcare is a big sticking point as well. For many years my now former endocrinologist and I had discussions or maybe even closer to arguements about what my treatment was or where my treatment was going to go. I was talked twice into trying a pump but both times it ended up not going well. She told me just like at work what I was doing wrong all the time but she did not realize I was not a “normal” diabetic. We finally got to that point when after the second pump didn’t work she had me tested and admitted she didn’t know what to do with me. I left her care shortly after as it didn’t seem she was really listneing to me. I had been telling her I was not normal since I first met her. I argued against the pump but after promises were made I agreed. After it failed to stop lows and ended up raising my A1C, we argued about where to go. She wanted to set me up on a med that she apparently forgot she had me try before going back to the pump again. I ended the argement by starting back on the same insulin I had been on before without her complete agreement.

OK, the point I am making is that I am the only one truely looking out for me. Employers will look at what is best for them, doctors on what is best for them, and friends for what is best for them. I don’t fault them too much for it but I can’t just sit there and let them decide my fait as they are not going to live it, I am. Getting my pay cut and placed into a position which I did not want pushes my decision to go elsewhere. The doctor pushing me to try a pump the second time then seeming to fight me getting off it, even though she said she woud support that decision, made me find another doctor.

My opinions are not meant to match anyone else’s as they are for me, not them, and they do not live my life. You can have your opinion as it should fit your life but not anyone else’s. We are all different and have different needs. If I can I will help you out but don’t expect me to surrender control of my life to make yours easier or to agree to your opinion. My decision are made by me for me, not you.

Damned If You Do Damned If You Don’t

I wrote a post a little while ago on Facebook and got a few comments back that showed me a need to explain diabetes and what causes it. I’m not dissing or throwing shade on anyone (modern young person terms) because I looked online and was horrified by what I found. The 2 type of diabetes are thrown together and made to seem like they one disease of which type one was the worse than the other. From my view point they are in reality 2 different but related diseases. Type 1 is caused by a bad gene called SIRT1 gene and it causes an autoimmune response in which the body’s immune system kills off the beta cells that create insulin. Type 2 is more of an environmentally caused disease. Being overweight, not eating good balanced diets, not exercising, and yes genetics also are all noted for causing this disease. The biggest difference between them is using insulin to control it. Type 2 diabetics can control it without insulin for quite a while. I have an aunt who has had for longer than I have but was able to control it with diet and pills only for decades before it progressed into needing insulin to control her sugar level.

I was never that lucky. I was 8 when I was diagnosed with type1 diabetes. I ate my veggies (not so much now lol) and was very, very active back then so diet and exercise get thrown out the window right off the bat. Nor was I fat back then. I spent too much time riding my bike all over town to eat all the time and sit in front of the TV. My body’s immune system killed off the beta cells that made my insulin. I had a test run last year (after the last pump failure) to see if I was actually type 1. I am. My body does not make any of its own insulin nor do I have any binding antibodies in my blood. Those are another possible causes of the issues I had been experiencing.

Now on to the “cures” for diabetes. The plain and simple fact is there is no cure for diabetes, type 1 or type 2. Yes type 2 and even type 1 can be controlled BETTER by taking certain herbs and medicines. The oldest one I heard of is garlic. It actually contains the vitamins that help insulin act more efficiently. The only issue to me is that if you need to take garlic additives or add more of it to your diet you weren’t eating enough in the first place.

Now as far as curing type 1 diabetes, there is no cure and I do not have much hope I will see one in my lifetime. The true cause of diabetes is the reason for my lack of hopeful thinking. Since it is caused by a bad gene even if you used stem cell research to make new beta cells what will stop your body from once again destroying them? The only true fix is to fix the bad gene. We are no where near that kind of medical technology, unless you watch too many movies.

I had a previous experience with this issue, the difference between treating a symptom or fixing the cause. My shoulder when it is was messed up was hard to get diagnosed let alone treated well. They kept trying to use physical therapy to fix it. Several CAT scans and MRIs later they could not find a decent answer to the pain I was having. It went on for nearly 3 1/2 years, I’d go to therapy and then the pain was back. Finally I did my own research and found that scope surgery had a 90+% chance of ending the pain. So I asked and was told if it was what I wanted they would do it. The only other option brought up was a steroid shot which for a diabetic is a true nightmare. It will send your sugar level into orbit for the better part of a week. When even the doctor is reluctant to do it you know there is a high risk factor.

Well, the surgeon told me after the surgery he found the problem as soon as he got the scope in there. I had apparently dislocated my shoulder and ripped 1/3 of the cartilage (cartilage does not show up on any CAT or MRI scans, only scopes can see it) off the front of the joint. It had been getting pulled into the joint and that had in turn torn up my bursa sack (lubricates the bone to bone joint). For 3 1/2 years they had been treating the symptom instead of the real problem. In that 3 1/2 years it had probably caused even more damage. One can never really be sure but you have to wonder about it. So if they had gone in and looked when it first started would my shoulder still have a bursa sack?

Back to diabetes, so the death of the beta cells is not the true disease simply a symptom of a bad gene and run away immune system. So to really fix (cure) diabetes you will need to fix this bad gene. The holy grail of medical science is to be able to fix bad genes. Downs, diabetes, heart issues, and many other diseases are greatly or solely influenced by genes, mainly bad ones. Its a two edged sword as well though. Where do you stop once you start? Do you give people animal hearing? Better sight? Fur to be able to handle colder temperatures? Where do you stop at this level of engineering? Damned if you do damned if you don’t.