So, I have Type 1 Diabetes. I’m learning that I need to become an education tool for Type 1 and to be very vocal about what I’m going through. Here is some information about the new Taryn:
Type 1 Diabetes is very different from Type 2, so forget everything you think you know about diabetes. Type 1 is rare– 8.3% of the US population have diabetes, and of that 8.3% only 5% have Type 1. Type 1 is an autoimmune disorder and is actually more in relation to other autoimmune disorders like Rheumatoid arthritis, Crohn’s disease, and Celiac’s disease than it is to Type 2 diabetes.
An autoimmune disorder is when your immune system makes a mistake and attacks a part of your body. With Type 1 diabetes, the immune system attacks the Beta Cells inside your pancreas, the Beta Cells are what produce insulin. Insulin carries the sugars from the foods you eat into your cells to give them energy to use. So without insulin, sugars stack up in the blood stream and cause all kinds of damage, and your cells are without energy. When the cells can’t get energy they start burning off the fat in the body (which is why I’ve lost so much weight over the last year) and the by-product of the cells burning fall is called ketones. High levels of ketones in the blood can lead to a serious condition called diabetic ketoacidosis (DKA). If blood sugars aren’t constantly monitored, within hours a person with Type 1 diabetes can develop ketones in the bloodstream and become DKA, go into diabetic shock and die. When I was admitted to the hospital on New Year’s Eve, I was in DKA. My doctor at the hospital said if I hadn’t come in, I would have been dead within two days. A normal range for blood sugars is 80-100. My average blood sugar for the past 3 months is 407.
Type 2 diabetes is when the cells become resistant to insulin. The cells won’t accept the insulin and so sugars can’t get into the cells and remain in the blood. The pancreas is still producing plenty of insulin– and so a Type 2 cannot become DKA and doesn’t run those risks. Because they have excess insulin in the blood stream that isn’t being used, they do run higher risks for other related problems like heart disease. Type 2’s can decrease insulin resistance through good diet and exercise. The better you eat and the more you exercise, the more efficiently your cells use insulin. Because Type 2s still produce insulin and because they can manage insulin resistance through diet and exercise, Type 2’s usually don’t have to monitor blood sugars or take insulin as constantly as a Type 1. Often, they don’t need to inject insulin (since insulin production isn’t the problem) and can manage blood sugar other ways. A Type 1 cannot change their diabetes through good diet and exercise, nor is the disease brought on through poor diet management. No matter what I eat, my body will still not produce insulin. There is no cure, there is no making it better or decreasing the affects. It’s a matter of managing my blood sugar and insulin levels for the rest of my life through injections and blood tests. With Type 2, Insulin resistance can happen because of genetics or poor health/diet management, or it can just happen. Type 1 is not genetic. It’s random bad luck. Think autoimmune disorder, not the genetic-and-diet-based diabetes we all think of (which is Type 2).
It’s interesting for me to think that just 100 years ago, anyone with Type 1 diabetes just died. There was nothing to be done. In essence, the body starved itself to death. I am so lucky to be alive. I am one of a very select few in the history of the world with Type 1 diabetes who has a chance of surviving it. I’m lucky to still be here as a mother for my boys, and I’m soaking them up more everyday because of it.
There are a myriad of side effects to diabetes. High blood sugars damage nerves, cause poor circulation, and dehydration, which is part of the reason that diabetics often have to have limbs amputated or lose their eyesight or feeling in their feet and hands. With diabetes, parts of the body have to work harder than usual– such as the kidneys– and so diabetics often get kidney disease.
With high blood sugars comes poor circulation which means the smallest cut or wound will take forever to heal. Surgeries are risky for the same reason. Also, because the immune system is compromised a diabetic who gets sick with a simple cold or fever is usually three times as sick as a non-diabetic and takes twice as long to recover. Even being sick presents a whole new issue because illness causes the blood sugars to rise, so blood sugars must be monitored even more closely during illness. Blood sugars also rise when diabetics travel, or are stressed. Diabetics are also at risk because their bodies cannot fight infections very well. Also, up until about 10 years ago, they would tell diabetics that they could not have babies. Doctors allow it now, but it takes a crazy amount of monitoring, risk management, and effort on the part of the mom and the doctors. Seems like every day I am learning something new about Type 1 diabetes. I am re-learning how to live, how to eat, how to go through a day, but I am so thankful that I have that opportunity.
With Type 1 diabetes you have to CONTINUALLY monitor your blood sugars and CONTINUALLY give yourself insulin. As in constantly. As in all throughout the day. As in I poke myself at least 12 times a day. There isn’t an hour of my waking life that I don’t have to think about managing my diabetes. I am a walking pin cushion, and yes it hurts each time, and yes I am covered in small bruises and tiny red dots. If my blood sugar is ever over 250, then I also have to check for ketones in my blood with urine test strips, and my blood sugars are rarely under 250 in these early weeks where the doctors are trying to find the right levels of insulin for me. On the other hand, each Type 2 diabetic has their own individual situation that dictates how often they have to monitor or even if they need to use insulin injections, but overall they don’t need to monitor it as closely and usually only need to take insulin if they’ve been diabetic for many years. They still produce insulin, it’s just that they’re cells aren’t accepting the insulin, so after years of overproducing insulin the pancreas wears out. It isn’t until that point that they have to begin to take insulin injections. And again, they can decrease their diabetic symptoms with good diet and exercise, and may even be able to prevent the possibility of needing to take insulin injections later on.
Not with Type 1– if I want to eat an apple I have to: pull out my slew of supplies, prick myself with my lancet, put an (expensive) testing strip in my blood sugar monitor, wait for the monitor to activate, dip the testing strip in my blood, wait for the result, write the result down in my tracking booklet, perform a math calculation to determine the amount of insulin I need to correct my blood sugar, then perform another math calculation to determine the amount of carbs in the apple I want to eat, add the numbers and write them in my tracking booklet, pull out my insulin pen, put a new needle on, turn the dial to 2 units, squirt the 2 units into a sink or garbage can to prep the insulin pen, turn the dial the correct number from my calculation, stick myself with the pen in my belly and inject, count for 7 seconds then slowly pull out, safely remove the needle and discard according to state regulations (depending on which state I’m in if I’m traveling), and return items to my carrier. And then I can eat the apple. I eat a lot less snacks. Just not worth it. If I don’t do this each time I eat, then there is no place for the sugars from the apple to go.
This whole scenario is even more complicated when eating out, or eating with kids, or eating at work. I’ve had three hypoglycemic episodes in the past week (when my blood sugar gets dangerously low). They are horrible and scary to say the least. There is also the added difficulty of getting my extensive and expensive prescriptions filled. I’ve spent hours at various pharmacies, sometimes crying and making a big scene just to try and get my prescriptions filled. And then there is work. They’ve been unsympathetic and horrible– disciplining me for the time I spent in the hospital. I’ve been thoroughly harassed and discriminated against for the times I physically could not come in to work, or even stand, and discriminated against for having a life-threatening disease. I’ve been there at work when I shouldn’t have been, without any appreciation. But, for now I’m glad for a paycheck.
Something funny about this is that one of the first things I was concerned about in the hospital when learning about all of this is my ability to go camping and hiking when I want to. Insulin has to be kept at specific temperatures and is only good for so long. I’ve also been thinking about how to make sure I have what I need if there is a zombie apocalypse. ; )
It’s been frustrating dealing with everyone’s preconceived notions about diabetes, which really don’t apply to my situation and Type 1 diabetes so I guess I just wanted to give everyone some perspective on what I’m going through. I’ve found that it’s hard to have perspective until you go through something yourself. I’d appreciate for people to understand that this difficult and my whole world is different and changed. It’s been even harder to not be given the space and time (from work) to figure this out and deal with it. I’m not looking to push some sob story and make everyone feel sorry for me, just some understanding would be nice. Very few people seem to understand diabetes. I think there is a stigma with diabetes that “you caused it through poor diet” and so many are unsympathetic. Or they just don’t know that every aspect of my life and how I have to live is different now, and everything is harder now. I certainly didn’t understand diabetes before now, or really any life-threatening illness and I’m a little ashamed at having been less sympathetic to others in similar situations. Kinda like when I had my first child and everything changed, and I had no perspective before.
I am so thankful for mom, dad, and Shayne for their help and understanding. I am so thankful for Quintyn and Corbyn for being angels in my life to help me along. Sometimes I think they help me way more than I help them as a parent. I used to think that I was assigned to be their mom because I could help them in a unique way, but now I know that they were sent to me to help me in a unique way.
Anyway, love you all.