Conquering life living with Type 1 Diabetes

Tuesday, April 24, 2012

The things to not say to a Diabetic

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There is nothing I hate more than being told that a supplement or a certain diet plan will cure me of Type 1 Diabetes, or that maybe I ate too much sugar as a kid, or I am too skinny to be Diabetic or if I exercised more I wouldn't be Diabetic. These things are all stereotypical statements from people with no knowledge of the differences in Type 1 and Type 2 Diabetes. Would you tell a Cancer patient to go off radiation or chemo and take a supplement to cure them? This sort of statement is unacceptable for them, the same sort of treatment should be given to people with Type 1 Diabetes. A pill, supplement, vitamin, juice concoction, or whatever is NOT going to cure me, help me, reverse my disease or stabilize my blood sugar levels. INSULIN is the ONLY thing that has the ability to keep me alive. I go off INSULIN and I DIE, there are no questions about it. Type 1 Diabetes doesn't care what color you are, what weight you are, what height you are because it is an auto-immune disease. My body went haywire and killed off the cells in my pancreas that make insulin, DEAD, they are DEAD and will not self revive themselves. Granted some day they may find a way to regenerate the cells and keep my body from killing them off, but as of right NOW that treatment just isn't available. I am not accusing any of you of making such ignorant statements, but I do hear them and I am so tired of hearing it, tired of explaining the real truth about Type 1 Diabetes. If you feel you know what Diabetes truly is, go online research and find out that you really only know the tip of the iceberg about the differences. Also there is no such things as brittle or "bad" Diabetes. Some people are much more sensitive to insulin, or some more resistant and that doesn't make us bad, that just makes us all different. Not ONE single Diabetic is the same as the next. We as humans were not meant to do the work of our Pancreas, it is nearly impossible with the current treatment of insulin. Insulin is very unpredictable at times, one day it can work just great other days it doesn't work as well. It can sometimes be absorbed really fast or really slow and that has a major effect on blood sugar numbers, it can also have a major effect or detrimental effect on our life. If it is absorbed faster than we expect or miscalculated the carbs we ate we have a low blood sugar and if not caught in time we will DIE, if is absorbed slower or miscalculated the carbs our blood sugar goes high and if not caught in time we can go into a coma and DIE. Daily stress and illness also has a major effect on blood sugar, so don't the fluctuating hormone levels a woman goes through every month. It is all different for each one of us which in turn makes it a much harder disease for doctors to treat because they can't use a one treatment plan fixes all plan with us. I know not many of you will read this but I know at least the people who really care will or the people who really do want to know the differences. If I educate just one person on this Disease my goal has been met. So please don't tell someone they are a "bad" Diabetic or they have the "bad" kind of Diabetes, nothing hurts us more. We know Diabetes is a BAD disease to have, we know because we live with it every second of every day and it is NEVER going to go away and we KNOW that this disease has the potential of ending our lives. We know, trust me on that one.
Originally written on April 24th 2012 

Thursday, February 23, 2012

Blood glucometers inaccuracy and my Dexcom CGM....

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I hate the fact that blood glucose monitors are allowed to be so inaccurate. I just got a whacky reading of 171, thought hmm thats odd, rechecked...140. How the heck am I suppose to gain any stable control when a correction for 171 would have made me go low when I was really 140. I always feel weird around 140-150 and can never tell if I am high, low or ok. I have felt low at 150 several times, corrected and shot straight to the upper 200's so I always check now. Also I cannot sleep (hot, sweaty and uncomfortable) if my blood sugar is over 150, anyone else like that? I guess it is a good thing because my body it trying to tell me, hey you...check your dang blood sugar.  My average on my meter for 30 days is back down to 138 and I am so excited, hoping to get that number to 120. I am still horrified to get down to an A1C of 6.0% but I will sure try. With my Dexcom I can interrupt a low in progress, I LOVE that.  I absolutely LOVE my DEXCOM CGM, without it I would feel like a blind person trying to walk through a forest now that I have had it for two months.  I also love my Dexcom because I have had the same sensor on for 15 days and it is still accurate, go figure.  I have only used four sensors since the last week of December and I have 8 left.  Thanks to Smith & Nephew Opsite Flexfix I have the capability to wear one that many days and this tape is the sh*t!!  It flexes with movement, it doesnt pull on your skin, and holy smokes when I go to pull it off after 15 days I am amazed at how hard it is stuck to me!!  It also doesn't retain moisture and it dries fast after showers.  It's just the most amazing tape I have ever used!  Thank you to that woman who wrote that blog about her son's terrible allergy to the Dexcom adhesive, that is the only reason I got the Flexfix!  I was having terrible allergy issues with SkinTac wipes and was about to go out of my mind itching.  I no longer use that junk for anything, thank God.   

Wednesday, February 22, 2012

What I have learned from Facebook Diabetic Support Groups....

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So after being on a few Diabetic support groups on Facebook I have learned many new things. Most importantly I have learned that the majority of Endocrinologists and General Practitioners are still practicing OLD SCHOOL Diabetes treatment plans. Most are still not even discussing putting people on insulin pumps or continuous glucose monitoring. These are the latest and greatest treatments available. Granted it is NOT for everyone and I understand that but the people who call themselves ENDOCRINOLOGISTS (Diabetes doctors) that are unwilling to put people on pumps that want to be, should have their LICENSE REVOKED! This is one of the many reasons why so many Diabetics are in SUCH BAD SHAPE!! They are being denied the most up to date treatments and these things are what will help prevent Diabetic COMPLICATIONS later on in life. There are still medical professionals and other Diabetics that think because you are on a pump you are a "really bad Diabetic" that is so far from the truth it isn't even funny!! In fact an insulin pump is the best treatment we have AVAILABLE to us and it still SUCKS at it's best. Insulin is so unpredictable and it has been around for YEARS and yet it hasn't been perfected yet!! I understand the same could be said for many medications but to eat the same things each and every single day and take the same exact amount of insulin every single day and to get a different result every single day, THIS IS WHY WE HAVE COMPLICATIONS and why it is so frustrating!! Any little swing in your blood glucose level causes damage...it's unavoidable with TYPE ONE DIABETES. Being a female, our hormones are also fighting us throughout different times of each month causing our blood glucose levels to swing in an unpredictable manner. I am just so fed up with the freaking medical field I just want to smack each and every Endo that doesn't want to do pumps or doesn't think they are a good thing....they think this only and only because they DONT WANT TO LEARN how to use them!! Many people take what they say and write it in stone when in fact there are better things out there and better ways to treat Diabetes but they just put on their blinders and go about treating it like it's 1950. I learned the hard way, my first Endo was a moron and didn't EVER talk to be about carb to insulin ratios, correction factors, active insulin or sensitivity changes, and I figured I was getting the best treatment I could!! I WAS SO WRONG!! SO SO SO VERY WRONG!! Then I met Calli, my Certified Diabetes Educator, and she saved my life!! She set me straight and got me on a pump and figured out all my settings and within a few months had my numbers in much better shape! If it wasn't for her I wouldn't know all these things, I wouldn't be on a continuous glucose monitor and I would be going down a rocky path to my health's destruction. So to anyone who knows any DIABETICS please tell them you CAN GET AS MANY TEST STRIPS as you NEED, you CAN GET ON A PUMP and you CAN GET ON A GLUCOSE SENSOR if you WANT it!! DO NOT let any doctor tell you otherwise!!! I just want to scream it from the roof tops because I am SO FED UP with the crappy American health system and their ignorance towards my disease that I fight every single second. Please don't get me wrong there are much worse diseases out there, I am not trying to sweep them under rug, but this is the one I am fighting and I want to help others fighting it as well.

This doesn't even come close to the scrutiny that Diabetic women get when they are pregnant.  I have heard horror stories from other Diabetic pregnant women, most of which are caused my medical staff.  From people being forced to remove their pumps to over or under dosing insulin.  This is insanity!  What year is it....2012 or 1950?   I mean really what is taking so long for everyone to catch up?  

I am only sharing this because I want to help others that don't even know this is possible, this is for the people that think that their insurance only giving them 4 strips a day is ok, when in fact you can get more, you just have to FIGHT!   Don't accept no for an answer EVER when related to your health...keep fighting.  I had to fight 6 months for my pump, 5 months for my glucose sensor and getting a letter written to get 300 test strips a month.  
Originally written on 2-22-12

Sunday, January 1, 2012

How Dexcom CGM has changed my life.

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The Dexcom sensor has been a life changing device for me.  I have been Diabetic for 12 years and on an insulin pump for almost 3 years.  I recently tried the Medtronic CGM and absolutely hated it.  The insertion was terribly painful and painful for the entire duration I wore it.  I attempted to wear it on my leg and it caused so much damage to my muscle that it hurt for an entire month.  I was about to give up on CGM, that and my insurance was creating too many hoops.  Then on a Facebook goup a bunch of the members were praising Dexcom CGM.  So I inquired with them and then called Dexcom.  They put me in touch with Tim and he was exactly the person I needed to talk to.   He explained the system to me and made it sound great.  I also told him about my Endocrinologist issue and the fact that my current one didn't "do Dexcom sensors".  Tim told me about this newer Endo in Dekalb, IL and how much he really liked him and his staff.  I figured what could be worse, I'll give him a shot.  He was more than willing to listen to me and all my current issues. Their staff is just amazing, more than willing to do whatever they can to help, and I am a NEW patient.  So long story short, I was approved for the Dexcom thanks to all of their help and hard work.  Tim put me on a trial Dexcom system to wear, and the insertion pain was very brief and almost like a finger stick.  Afterward it did not hurt at all.  This was just amazing to me after trying the painful Medtronic system.  After the second trial sensor (first one failed at day 3) and seeing how accurate it had become I slept the best I have slept in 12 years.  I cannot even put in to words how much better I felt in the morning.  The sensor put my mind at ease and I just slept like I wasn't Diabetic.  Every single night I typically wake up and check my blood glucose and for the past few days if I wake up at all at night I check the Dexcom reading and if it is in the range I feel comfortable I just go right back to sleep.  Also recently the Dexcom woke me because my blood glucose had dropped and I was in the 50's but was totally unaware of it.  I most likely would have woken up near 20-30 and that is just plain terrifying for me.  With the Dexcom CGM technology being so much better than Medtronic's, I feel their system would have totally failed for me as I do not have stable blood glucose readings very often.  Calibrating their technology to me would have been a total nightmare.  Thank you Dexcom for inventing this technology and making it so user friendly AND as painless as possible!  This is the technology that has the potential to save thousands of Diabetic's lives who live alone or are driving in their car and their blood glucose crashes without their knowledge.  There are a million different scenarios where this can and will save lives.  No one should have to die from a low blood glucose or just Diabetes in general.  This is the technology that puts my mind at ease about my brother living alone, I have had nightmares about him living alone.  He is on Medtronic's CGM.  At least I can go to sleep and not worry every single night about getting a phone call that he has passed away in his sleep.  This is a real fear for me, a sibling, I cannot imagine the fear that parents have for their children.  Again, thank you so much, from a 12 year Diabetic who is willing and wanting to use any technology available to help me wrangle this disease.  My only wish is for all insurance companies to cover these wonderful devices for all Diabetics and without fighting them for months to get it.  A special thanks to Tim Palmer for all his help and for driving 2 hours, one way, to get that trial system for me to wear, TWICE!  
Originally written on 1-1-12