Day 22-

So when we end up in uncomfortable situations, sometimes we end up saying things we wouldn’t normally say, or maybe even things we don’t really mean. Sometimes we stop listening and as a defense mechanism just try to shut the conversation down. Most times the other person is just looking for someone to listen to them and maybe they are asking you to listen because you are important to them, what they are saying is important to them, OR you just happened to be there when they decide to share it. We have all been there; we have all been the person looking to share and also the person receiving information. Sometimes the information is hard to follow, sometimes it is hard to hear, and sometimes it is hard to give. What really matters though is that we listen. So where am I going with this? In the T1D community we all share with each other the worst things that have been said to us about our disease. Most of the time, these things are said just when we are stating that we have the disease. Sometimes the conversation can start because someone sees our insulin pump or pump site, or they see us checking our BG, or shoving some sort of food in our mouth quickly, or as most of you know I have a medical ID tattoo and sometimes people notice that too. So I have asked some friends if they would share some of the things said to them. Here is goes…“If you just ate healthier it would go away. If you eat healthy and exercise you are cured right? You can only have that if you are a kid right? Are you contagious? If you believed enough you wouldn’t have it. You still have it because deep down you don’t not want it to go away enough. I think you are meant to have it for some reason in life. God wouldn’t give you what you can’t handle. If you believed in Jesus enough you wouldn’t have this disease. Stop being selfish and just eat what everyone else made for you. I made this for you gluten free so you can eat it. I made this for you low calorie so you can eat it. I make this for you low fat so you can eat it. I made this for you so you need to eat it. Do you need to check your blood sugar in front of me? Can’t you inject your insulin in the bathroom, it makes people uncomfortable. It is all just in your head. Can’t you just suck it up? You aren’t going to just die are you? Oh, you should stop eating doughnuts.”

Ok, so I am going to stop there because I could go on, but I feel like you all now get the point. First I want you to now think about someone that has an ailment that is visual, such as a leg amputation, (which can be one of the complications of T1D), and reread those comments leaving out the diabetes specific ones of course. Again a dynamic shift right? With T1D being an “invisible” disease, meaning unless you see a pump on our arm, you can’t physically tell we have the disease, for some reason people feel much more comfortable saying extremely rude things. Keep in mind NON OF THIS IS OK TO SAY TO ANYONE! This goes for any disease or bodily difference, if you don’t know what to say, don’t say anything at all. If you are curious, most of us don’t mind if you just ask us but start the conversation with an actual question and not an assumption. For instance, what is it like having T1D? Or I am not quite sure what T1D is do you mind telling me? Also a very sweet friend told me last night, that although she didn’t understand because she didn’t have the disease she could give me empathy because that is what she is good at. That meant so much to me. That is what we all want as humans is understanding, for some one to listen. This day and age makes it very easy for us to preach and not listen. That is how we got where we are. That is where anger breeds, is in misunderstanding. Sure I can be angry about what people say to me, but most of it comes from fear and a lack of understanding. Instead, I choose to educate. It takes bravery to ask questions and really, REALLY pay attention to what is going on around us. To learn about the people we are around everyday. Most of the time I find that once you get through the initial awkwardness and misunderstanding people are just curious and want to learn. We all have minds that want to learn and grow. I never expect everyone to know all about T1D, because our brains simply aren’t made to know everything and unless they have personal experience with the disease it is a lot of information to retain in you brain. I do expect though that people treat me, as they would want to be treated and so that is why I do the same.

Day 21-

One of my favorite Regina Spector songs starts like this, “ Some days aren’t yours at all, they come and go as if they are some one else’s days”. If you have never heard of her you need to, she is an amazing talented singer/pianist/percussionist/ songwriter. Today I am going to talk about bad days. Not just your regular bad days, T1D bad days. I am going to keep things real, so just a heads up. So a bad T1D day may go something like this, getting ready to do some sort of activity like running, walking, swimming, biking, or even going to a museum or zoo where you are going to walk around a lot and your BG goes low before you get there, then 30 minutes later it goes low, then 30 minutes later it goes low again. Then you finally get it stable and go out to do your thing and then when you get there and get started it goes so low you think you are going to pass out. There goes your whole day. That’s it. It doesn’t matter how much you want to do something if you are going to pass out doing it then it is a no-go. I have gotten ready for a bike ride and started out only to get 1 mile away and then have to ride home, or sometimes not start at all. Or get to a Dr. appointment or work and have by BG so low I am even afraid to get out of the car. This is extremely frustrating because you can see the building; it isn’t that far at all, yet you have to wait for your BG to come up so you don’t pass out on your way in. Also, then you are 10 minutes late for your appointment or work. A bad day is getting out in the middle of the woods alone, have repeated lows, running out of food to treat it with, turning off your pump because you are hoping to hell if you pass out you will eventually wake up because you stopped your pump and are so full of sugar you feel like a gummy bear. You know shit is bad when your dog won’t leave your side. All the exercise things apply to high BG too because, again, if you aren’t getting insulin for some reason, when your BG is high you are at risk of DKA and exercise can push you into DKA quicker in that instance. A bad day is having a crazy morning and forgetting to change your pump site and reservoir, to get out the door and then run out of insulin and then to have to immediately return back home, OR forget to put your pump back on after taking a shower, which does happen occasionally, and then realize an hour later and then return home from where ever you are and feel really, really stupid. A reminder, we are all human. A really bad day is putting a new infusion set in and hitting a vein, because our bodies are full of them, having to pull out the new site because insulin cannot be injected into blood (it will act to fast) and also the new site hurts like a SOB to have it bleed, and bleed, and how the hell can so much blood come out of a tiny hole, and then lay down with a blood soaked towel until it stops (which it does) and then get to put yet another infusion set in. We T1D actually have a name for these vein sites; we call them “gushers”. A bad day is to have an infusion set needles bend as it goes in, it kind of glances off of your skin but still goes in off to the side. Those leave a hell of a bruise. Human skin is amazingly tough, you would be surprised how tough. A bad day is an infusion set leaking due to scar tissue and not knowing exactly how much insulin you missed, was it 2 units, or was it 10? Then having to wait hours to see if you added to correct correction dose. A bad day is having your infusion site or tubing pull out and not know, or have half hanging so again you haven’t been getting insulin and have no idea for how long. Again you have to wait hours to see if you gave yourself enough insulin to correct for the leakage. A bad day is having low BG all night which leads to highs, you conservatively correct the highs, because you’ve been here before, only to go low again and this keeps happening all night into the next day. We call those rollercoaster days. Then you feel like you got hit by a bus and you still have to function all day. A bad day is accidentally sticking your 18g reservoir needle, which is used to get insulin from the bottle to the reservoir through your finger because you slipped. A bad day is having high BG all day and feeling like you have the flu only to have it come crashing down later multiple times. A bad day is having the flu because as you are figuring out now, vomiting and T1D don’t really go well together. If you give yourself insulin for a meal and then throw it all up, well you better get some juice in you so you don’t pass out from a low BG. A bad day is passing out from a low BG, ending up in an ambulance, and at the hospital. The thing about the Glucagon shot is yes it keeps you from dying, but when your BG starts coming back up it is very common for the T1D to start vomiting and also have seizures. I could go on, but I think you all get the point. Regardless of bad T1D days the world keeps turning and we have to keep moving. Most of the time, we suck it up, are glad we are alive, and just keep moving. There are sometimes though that when I am having a really, really hard time I choose to stay home because I am a little unsympathetic to common complaints and would not be proud of what would come out of my mouth. I know this must be all hard to hear and ready, but this is how our lives go, this is how it is. Most days though, we are fine, because please remember this is our “normal” as fucked up as it may be.

Day 20

The things we store. You might store some keepsakes, maybe some fishing trophies, maybe some ceramic figurines, and probably definitely some food. You might store books, or maybe your grandmother’s hand embroidered napkins, or your father’s woodworking tools. We T1Ds store supplies, some of them sharp and needle like, some of them not, some liquids, and all of them necessary. So what on earth does T1D have to do with storage? A lot actually! You see quite a few of us receive our prescriptions from medical supply companies and they come in a 90 day supply. Which all means BOXES, boxes of test strips, boxes of infusion sets, boxes of reservoirs, boxes of iv pre pads boxes of batteries, boxes of alcohol pads, and boxes of CGM sensors. Where do we put all of those boxes? There is a joke in the T1D community about their “diabetes cupboard”. Yes folks this takes up at least a whole cupboard, or a cabinet stand, or set of drawers. In addition to all the supplies, we also have to store our insulin in the fridge. Again some of us get 3 month supply, and if we loose power, you guessed we are SOL. Again a reminder, if insulin is refrigerated it is fine for over a year or the expiration date, but once it is room temperature it is only good for 30 days AND cannot be refrigerated again because if it is it will kill the insulin and therefore not work at all. So a lot of us store generators… just for our fridges. With that insulin we all need syringes for back up, just incase our pumps weren’t working and we need to do a manual injection. For those T1Ds that don’t use pumps, they usually use insulin pens, which need refrigeration and pen tips, which are little syringe tips that screw on to the tip of the pens. These usually come in a box of 100. We also store extra lancets for our glucose meter, and also an extra glucose meter or 5. If we have had more than one pump, we only get new ones every 4 years; we store those as back up pumps. Also, even though they are completely functional you can’t give them away… which is the most fucked up thing in the universe. Seriously, I have tried. So I have 3 old insulin pumps that work just fine just sitting in my house with a total of value of $20,000 but since I can’t give them to someone else to use, they are only valued as a back up pump. No I can’t sell them, because they are life saving medical equipment. Back to storage, we store extra charging cables and plugs for our pumps, CGM receivers, and last but not least we store all of our used needles and syringes, aka sharps. Why do we store our sharps? Well we don’t store them forever; we just can’t throw them away everyday because it is a HUGE liability and biohazard. If a garbage man was pricked by used needles, it would be a huge mess, plus a horrible day for the garbage man! So we have to store our sharps in a sharps container until it is full and we can dispose of it property. So yes I have a container of used needles in my house all of the time. Just so you get a concept of how many we go through. A T1D that used syringes or pens would go through around 7+ a day. Also we are supposed to change our lancets every time we check our BG.. or once a day… most of us are bad at that. We can’t throw the old lancets away because they are tiny needles. I change my infusion set every other day and that includes 2 needles, and a cannula that was in my body. Also the CGM is changed once a week or 10 days and that is a huge ass needle. Needles to say we store a lot of sharps. One more thing we get to store is paper work from our appointments and bills for our taxes or for reimbursement from the underinsured program if we are eligible. Yes! This.. is.. so.. much..stuff! So, if you get a nicely wrapped present packaged in an infusion set supply box this Christmas, you will understand why.

Day 19-

Let’s take a turn and talk about new and emerging therapies for T1D. The ones I am going to talk about today do not involve medical devices. Let’s start with smart insulin. They are working on a new insulin that is glucose responsive. Meaning that the smart insulin remains inactive until it senses glucose in the blood and that activates it to start breaking down the glucose until it is at normal levels again. This also means when your blood sugar is low the smart insulin is not active, thus it would allow the liver to release sugars into the blood stream to bring your BG up without the added insulin to bring it back down again which is what happens when you have T1D. This is amazing and began clinical trials in 2015 and is still in the trial mode. There are now other companies trying to come up with similar glucose responsive insulin in different ways. Another thing that has been going on for a while in Argentina and Switzerland is islet cell transplants by way of stem cells. Islet cell transplants have been going on for a while, the problem is that if you have T1D your autoimmune response kicks in and eventually can kill all the islets cells again AND you have to be on immunosuppressant drugs the rest of your life and those have some pretty nasty side effects. So the islet/stem cell transplant begins with your own stem cells and tricks them into mimicking beta cells, which produce insulin, but because they are not actually beta cells they are not killed off as quickly by the autoimmune response. They have found that also since they use the patient’s own stem cells the body responds better to the therapy. This procedure can take up to 4 months before the patient no longer needs synthetic insulin. Yes this is amazing right? Well, it is very expensive and only lasts for so long and that length depends on the individual patient’s immune system 5-20 years. Also, you have to be able to find a Dr. and medical team that is local to you for follow up care… most people can’t just fly across the world for a follow up appointment. So this isn’t practible or affordable for most people with T1D. Lastly I am going to talk about Dr. Faustman’s Lab and the BCG vaccine. This is the trial I was screened for in Boston. So Dr. Faustman has been doing autoimmune and T1D research for a long time. She found a protein that could be injected in mice and it would target the autoimmune infected T-cells in the body and kill them. Thus reversing the autoimmune response. She then realized that the BCG vaccine, the vaccine for tuberculosis that has been around for 100 years, was similar to the protein she was using. It is based on a similar protein. Thus began the trials. The beginning trials began in 2008… this is how long this all takes sometimes folks. Last year the lab was approved to begin human trials and they began this spring. You should know that the BCG vaccine is no longer given in the United States due to our low TB rates. It is still given to infants around the world and is a very safe vaccine. The trial is 5 years long and involves 5-6 injections of the vaccine over that 5 years with follow up appointments. This is all happening at Massachusetts General Hospital. The part of the trial I was screened for involved PET scans. I unfortunately did not have enough c-peptides left in my body to participate in this phase of the study, but I will be participating in another phase starting next year that is for T1D with little to no c-peptides left in their body. So let me say this again, this therapy would reverse the autoimmune response… let that sink in… YES, while they aren’t calling it a cure, it is a reversal. Yes, THIS IS HUGE. Why haven’t you heard about it? Dr. Faustman’s lab doesn’t directly receive any NIH funding and have raised all of the almost $25 million on their own or through small fundraisers. Also this is not a new drug… it has been around for 100 years, it is just a new context to use it. It should also be known that the BCG vaccine is already used to treat some types of bladder cancer and they are already looking into it being used to stop the autoimmune response in MS. I am going to let this all sink in for you. No one has cured any autoimmune disease to date. Now, just so you know, because I don’t have any c-peptides doesn’t mean this is going to work for sure, or that I will be able to go insulin injection free, but I figure even if I start producing some on my own, that is a hell of lot better than none. I am very excited about this but was a little hesitant to share it. You see most of us T1Ds are a little hesitant and cynical when it comes to new treatments and a “cure”. We have heard it all before and have been on the “cusp of finding a cure” for at least 10 years. 10 YEARS people!!! All the while we still need to do what we need to do to take care of ourselves, make sure we don’t have any complications, and try to live a long healthy life with T1D. Also all of this takes soooooooooo long. If I weren’t to be part of the study and say this all does work, it wouldn’t be approved, if it even does get approved by the FDA, for at least 5 years. So I am just crossing my fingers and I will believe it is all happening when I actually go to Boston for that first vaccination.

Day 18-

So as kind of a continuation of yesterday, I am going to talk about flight travel today and Transport Security Administration, because, TSA deserves it’s own day. So if you were to have T1D and were going to fly one might think that all the needles and insulin would cause some issues right? Actually, no, TSA and all the security measures actually are pretty easy and straight forward with insulin, syringes, glucose meters, test strips, extra CGM sensors, we can even bring our own unopened juice boxes or gels through security and it is all good. I just have to tell them I have T1D, make sure my insulin has the prescription label, and what bag it is all in. Remember, we have to carry it on with us due to the potential of lost bags, also cargo hold temperature, and we just plain need it with us all of the time. Where the issue comes in, and it is a HUGE issue is the medical devices. Somewhere in their training, and I am so sure it is the longest training in the universe, they were completely misguided about insulin pumps, CGMS when it comes to whole body scanners. So it is very very VERY important to know that both insulin pumps and the transmitters on the CGM CANNOT be exposed to strong magnetic fields, i.e. x-ray and whole body scanners (a form of x-ray). It will actually kill both pumps and the CGM transmitter.. like not work at all immediately. All of the pump companies and CGM companies have issued formal letters saying exactly this. So when I fly I have to opt out of the whole body scanner. Sounds simple right? Nope! Since I am a female I have to wait for a female agent to come pat me down and search me, if I have checked luggage that usually gets searched too, and they have to have me touch my pump and swab me to make sure my pump is not a bomb. Ok, so I understand this is all for security and appreciate them and how hard their jobs are. It is when they ask me why I am opting out that they like to argue, and argue, and argue with me that my pump can go through the machine. Oh, and I mean argue. I have finally gotten to the point where I try not to tell them I have an insulin pump, I just tell them I have a medical devices implanted in me that cannot go through the scanner. Just a FYI pacemakers can’t either, so this isn’t such a foreign concept. I have even tried showing them letter from my pump and CGM companies but that completely doesn’t matter at all. It is all so frustrating and idiotic sometimes I wonder if it is all not for real and just a joke. Please know I don’t mind being searched or being tested for bombs, which is what has to happen when I opt out, but I would love for once to just be able to do that and move on. I will give you some examples of the fun. I was in Huston visiting a friend and doing and a metal demo for her class and was travelling home. I told them I had to opt out, which then we argued about being able to go through the scanner (a lot of times I just tell them if my pump fails they are liable for the $7000 for a new one and that usually works), and I had to wait for a female agent. They proceeded to put me in this 5’ long x 3’ wide x 7’ tall Plexiglas “holding” box in the middle of all the security lines. It was actually pretty funny because the box has holes in a circle in the side to talk through but they looked like breathing holes. The box did not have a top so it was open to the room. So people were swarmed all around this box in TSA security lines and I was standing there barefoot, with pig tails, and a tie-dye t-shirt. One passenger passed me and made a joke about me being a bad person and the TSA agent told him he wasn’t allowed to talk to me. I had to wait about 10 minutes that time, which is actually not that long, and the female agent was very nice, and I went on my way. A lot of times they see my medical alert tattoo while searching me and say “oh”, like seeing my tattoo makes it more legit?!? Recently I flew for a quick trip, less than 24-hour trip to Boston to be screened for a human clinical trial for a new T1D therapy. Don’t worry I will talk about that on a later day. I was leaving from GR, and if you have flown recently you know they have been redoing all their security so it was a mess. I told them I opted out and had plenty of time before my flight. I waited 10 minutes for a female agent, 15 minutes for a female agent, 20 minutes for a female agent, all the while I am just standing off to the side while other passengers are going through the scanner that has a female agent manning it and she is talking to me intermittently. I finally told one of the agents I was going to miss my flight, he proceeded to not do anything and tell me they were doing the best they could. Then another agent came close to me and I told him the same thing and that I had been waiting 25 minutes. He was quiet and then announced that people with medical devices could follow him through the metal detector. Then the female agent said, “Why didn’t you say anything?” as she was searching me and she commented how calm I was. I told her I was screaming on the inside, and really folks if I had screamed and made a scene I would have been detained. As I got to the gate they closed the doors behind me. Yes there are other flights, but this trip was very tight and if I missed it I may have missed the opportunity to be in the trial. Not to mention I am a human being. I understand this is not the agents’ fault and that their training is just wrong. I am not sure how to make it better, except I now get there 3 times as early. I do know that I am not alone in this and have other T1D friends that had similar issues and went through the scanner, trusting the TSA’s knowledge and have their devices fail. It is just all screwed up. So if you want to have a fun adventure, come fly with me… I promise a full demonstration of TSA’s security measures.

Day 17-

So by now you are probably realizing there is wayyyy more to this disease than you ever imagined and that were some myths or “ideas” that you had about T1D that aren’t even close to the truth. So today I am going to talk about discrimination. I know it is an ugly word, but just because we don’t like to hear it doesn’t mean it isn’t out there or we shouldn’t talk about it. So what is there to discriminate when it comes to T1D, well a lot. I am going to talk about some of the situations I have experienced being a T1D. The first one is one that maybe you would never think of, I know I was surprised. But you see that is when it happens, when you least expect it. I had a new dentist I was seeing in a Dental office; he was new to the office, not me. He had seen me a few times in the past and was a little jumpy but I thought it was just his nature, a little nervous; he was young and fresh out of school. It wasn’t until I had a very small cavity that needed to be filled that I got the whole story. He said he wanted to wait until the afternoon to do the dental work because by then my blood sugars would be under control, I told him that they as much in control in the morning as they are in the afternoon. He said he was worried about infection from my high blood sugar and that he didn’t feel comfortable filling it in the morning. OK, so first of all, my BGs were under control and not high at all any time I had an appointment so he had no grounds for worry. Secondly infection from minor dental work is not common in general or even if you have T1D, third, he kept asking me my BG readings (this was pre CGM) and I finally told him it was none of his business. I had had dental work before and since then with different dentists, and no one ever asked my BG, they all did and do know I have T1D because it is in my file, but it is up to me and only my business how my BGs are controlled. This certain dentist then proceeded to treat me like I was contagious, like I was going to bite him and give him T1D, which you all know by now that is completely not the case, well maybe I should have bit him, but he still wouldn’t have T1D. I left feeling like shit. Now I want you all to know that he wasn’t with that practice very long and is no longer in the area, maybe he realized dentistry was not for him… I can only hope. Also, it is really important to know that things like this used to happen ALL OF THE TIME, in the time before they knew what caused T1D, in a time before science had some sort of understanding and when science did know the general population was decades behind in the knowledge, simply because not that many people have it. And even now, people don’t know that much, T1D gets way overshadowed by T2D because way more people have T2D and that fact that TV and movies misrepresent it all of the time doesn’t help anything. Another place T1Ds often run into discrimination is schools. Grade school, middle school, high school, and even college. Insulin pumps have made this all better, pre pumps students often were not allowed to carry insulin OR testing supplies around with them. Yes they couldn’t keep their own life saving prescriptions with them. I know what you are thinking.. safety, but remember we deal with this disease 24/7, it is never ending, who better to decide what we need to do when we have a low or high that US? Also, when your BG is low sometimes you can’t communicate or let alone walk down a hall, or stairs, or up stairs, or do much. Or the school wouldn’t let them give themselves a shot but also didn’t feel comfortable giving the shot. This was a common occurrence because of budget cuts a lot of schools no longer had a nurse on staff or someone with some sort of medical training. Like I have said pumps and CGMs have made this all better since they are on us and with us 24/7. Still some schools give T1D students a hard time. This is when I should mention that people with T1D are protected under the American Disabilities Act. This happened in 2008 with the Americans with Disabilities Act Amendment Act. It included T1D on the list of people that could not be discriminated against because of their disease. Meaning no one can limit/restrict access their medications, we have to be able to manage our disease while we are on the job, we can’t be fired for have T1D, we can’t be not hired or actually even have to tell an employer or potential employer we have T1D. Also, they have started letting college students have special testing sessions that are more private or allow more time for testing. Even in college if students and professors give you a hard time about checking your BG or administering shots. When I was in college I would often let my professors know that I had T1D and if I passed out to please call 911 so that I wouldn’t die, or if they felt comfortable I had a Glucagon kit in my bag with me at all times. I would let my art professors know mostly because they were small classes and 3 ½ hours long 2 times a week, so I spent a lot of time with them. I had one professor who I knew pretty well declare he would never administer the glucagon kit unless he had a nurse’s letter and he was outraged. I finally calmed him down and told him to just call 911. I understand he probably just felt uncomfortable with the whole situation, but he could have just said just as easily, and uncomfortable or not, I still need him to do the right thing. For the rest of the semester I just made sure my BGs were in tight control during that class. Also this was pre disabilities act. I always think it is a bit funny that T1D is now considered a disability when most of us that have it are trying soooo hard to just live a normal life and don’t consider ourselves disabled at all, but the ADAAA is very important and necessary. I have know of more than one case of a kid with T1D graduating high school and going off to college and getting a job. Well some people don’t quite understand T1D and their bosses not allowing them to check their BG, or correct their BG, or give themselves insulin, or eat food when they need to. These are all things we HAVE to do to survive. We don’t just prick our fingers all the time because we think it is fun, or sit for 30 minutes to wait for the room to stop spinning and our hands to stop shaking. These are just things we simply have to do, well we don’t have to do them but the consequences aren’t really an option. Lastly I have been treated very poorly because of my backpack, in retail stores, in museums, all over. Mostly it usually is them telling me I can’t have a backpack, I respond by telling them it is my purse, (seriously some purses are larger than my backpack), then they respond by telling me that it doesn’t matter, and then I tell them that I have T1D and I have to carry it because it has my meter and food in it, and then they give me a confused look and tell me I still have to leave it, and then I explain more about T1D and if that doesn’t work I either leave if it is a store and don’t go there anymore OR tell them I am covered under the disabilities act and I can carry it where ever I want. One time this happened at MOMA in NYC, after I explained everything, they were very nice and just asked me to carry it on the front of me so that I didn’t knock anything over, which of I did of course. You would be surprised how many arguments I have gotten in over a backpack. It is exhausting and a waste of time and often takes longer to go through all that than if I were just to go in and buy something. One time I was somewhere where they were extra rude and I just told them to follow me around and watch me if they felt like they needed too. Secretly I wanted to pretend like I was Godzilla and knock over all their shit in the store like a monster, but I didn’t of course. Lately restaurants have started trying to tell T1Ds they have to go to the bathroom to give themselves an insulin shot. First of all this is illegal, secondly, what a fantastic way to piss off and lose customers, and third most of us are so discreet know one ever knows. Just because we have a disease doesn’t mean we should be treated as less of a human being. T1Ds are always trying to just be human beings. We are all just trying to live our life as normal as our normal can be and that is all we want.

American Disabilities Act Amendment Act and Diabetes

Day 16-

To sleep, perchance to dream… ah that sleepy beautiful bliss. For T1Ds sleep is often our elusive majestic white stag… we know if it out there somewhere but rarely see it. If sleep is our white stag, deep REM sleep is our Pegasus. Why? Because of BGs being low, BGs being really low, BGs being high, BGs being low and then high and then low, BGs being low and then low and then low and then really high, pump sites being torn off in the middle of the night, cats eating through pump tubing (yes that has happened, my rabbit bit through it too once), getting your arm caught in pump tubing, sleeping on a hard square pump, ALARMS; i.e. pump alarms such as low battery, or low reservoirs, CGM alarms for low BG, CGM alarms for high BG, CGM alarms for high BG that is not really high, CGM alarms a low BG that is actually not low, CGM alarms for really really low BGs that is not low at all, and everything else in normal life. I will explain: So again when your BG goes low your body starts shutting down and to protect itself it will focus on your internal organs and the brain, so sleep isn’t necessary, you usually aren’t sleeping well at all somewhere between sleep and awake and you can wake up freezing, sweaty, shaking, or having a hard time breathing, or I have to go the bathroom really really bad, OR all of the above. I actually will have a hell of a time even falling asleep if my BG is dropping fast. It is so much stress on your body you can’t relax at all. Did I mention the symptoms are ever changing for a low BG? For a while I would wake up and my legs would be cold from the inside, like my body slowed down blood flow to my extremities to take care of my organs (which is what is actually can do) and when my BG would start to go back up after treating it I could feel the warmth start to fill my legs. Yes it was very, very creepy. Luckily that symptom only lasted for a couple of months. Sometime I will wake up from shaking so hard. Sometimes I wake up because I am freezing and sweating buckets. Luckily my body wakes me up, this is not the case for all T1Ds. Remember symptoms are different for everyone. High BGs can wake me up too. Sometimes because I can’t breathe, sometimes because my heart is beating so hard I can feel it and hear in my head, or sometimes because I am so thirsty, or sometimes because I have a headache, OR sometimes from all of the above. Also, like I said earlier lows and highs can occur multiple times a night, over and over like a rollercoaster. When I have nights like these I feel like I have a hangover, got hit by a bus, and was rolled back over all at the same time. My CGM can be fantastic at alerting me, I have it on vibrate now because I sleep through the beeping now and I have to wear it on my so the vibrating wakes me up. The only drawback is with the 20% variance the lows and highs can be inaccurate. So say my CGM goes off because it says my BG is low (70), but when I check my BG with my meter it is actually 100, (not low). I will calibrate my CGM to tell my BG is 100, and then my CGM will alert my BG is low again, (this time is reads 77). If my BG is with target range 80-110 this can happen ALL NIGHT. Also a fun little fact: if my CGM reads that my BG is below 55 (very low), it will beep and vibrate incessantly. This is a very necessary life saving feature, but again comes with the 20% variance. So my BG can actually read 70 by meter, which is low, but not as low as 55 when my CGM reads 55. I treat my lows differently. If my BG is below 60 I have to eat twice as many carbs as if it is 60-80. I have found for me that if it is below 60 it will just keep going down unless I have at least 40 carbs. Again every T1D is different. All this applies to the CGM and high BG readings too. That 20% can make a huge difference. Say it reads my BG as 298, but my meter reads 238. Yes 238 is a bit high, but the insulin dosing to correct it is very different. Also depending on what I am doing, like if I am going to be moving for a while, I would not treat 238 when I would definitely treat 298 with insulin. So some nights I have alarms going off because my BG is low or high and some nights it is going off because it thinks it is low or high. The latter happens more often with low BG readings. So why wear the CGM? Because the pros way outweigh all this and it has saved my live more times I can count. So my pump will alarm every 5 minutes when my reservoir, (the part that holds the insulin), is low until I hit a button to turn it off. It is a very sing-songy alarm but annoying non-the less. Also sometimes, not very often, I forget to change it before I go to bed and it runs out of insulin and then alarms every minute, and rightfully so, so then I get to get up and change my pump site and reservoir. Or say my pump site gets torn off while I am sleeping, and yes that wakes me up because it hurts, and then I have to get up and change the site. That is something I REALLY don’t like to do is wake up in the middle of the night and stab myself with the long-ass infusion set needle and sometime it really hurts. I don’t mind it during the day, but there is something about waking up in the night and inflicting pain on yourself. When my pump needs a new battery I have to rewind the cartridge part where the reservoir goes and act like I am changing my site without actually changing my site. I get to do this in the middle of the night sometimes too. Insulin pumps aren’t very big but they are not comfortable to sleep on at all, they are very hard and have rounded corners, but they are still corners. Also anytime you have something connected to you it is easy to get tangled up in it. Fun times right? There is a running joke with T1Ds that goes with the movie Elf -I got a full forty minutes of sleep last night. Because this is how we feel most of the time. Now, off to bed all this talk of sleep and lack of sleep is making me tired.

Day 15-

The things we carry. You might carry some chap stick, or maybe your wallet. You might carry you car keys, or some Kleenex. You probably most definitely carry your cell phone, and a credit card or 2. Me, I carry A LOT of shit. As a T1D I carry; my glucose meter, test strips, a tester, and extra lancet for said tester, a Glucagon kit, (yes all of the time), extra AA lithium batteries for my pump, and extra infusion set, another extra infusion set for my pump just incase my other one pulls out or the first one doesn’t insert correctly, extra iv prep pads, extra alcohol pads, a card in my wallet stating that “I am not intoxicated, I have Type 1 Diabetes” (this is actually very important incase I have a bad low and seem like I am drunk), a card in my wallet that states that I have T1D and am wearing an insulin pump and DO NOT TOUCH MY PUMP (this is also very important just in case I pass out or am in an accident and someone doesn’t remove my pump with all my programmed rates and insulin levels because if you are in an accident no one tries to take your pancreas out AND my pump can’t go through any sort of x-ray because that will kill it), my receiver for my CGM, my cell phone for incase I have a low BG and need to call for help, food to treat my low BGs like some sort of gels, more food to eat before I exercise, and more food for just incase because if I don’t have enough with me and I have a low BG I will pass out. So, now you all know why I carry a backpack. I carry all these things in addition to my wallet, keys, Chap Stick, and everything else. Now you all know why I ALWAYS have my backpack with me. If my BG is going low quickly and I have to walk somewhere to get something to treat it, depending on how low my BG is and how far I have to go I might not make it. I have tried carrying a purse of sorts, well it was a big one, but it hurts my shoulder, so a backpack works just fine for me. Yes, that means when I go for a bike ride I have to wear a backpack, or on a walk, or doing anything. Backpack, backpack, backpack! If you ever need any reviews on backpacks I may have a few. Now you know why I am so short… When I fly or go on trips I have to carry all things above plus; insulin, and extra bottle just incase I drop a bottle or grab the wrong bottle that only has a little left (this has happened), 2-3 times the amount of infusion sets I will need for my trip because I can’t just go to the store to buy more, 2 times the number of reservoirs for my insulin for my pump, iv prep pads for the trip, and extra sensor and insertion device, alcohol pads, extra test strips for the trip, and extra battery and reservoir cap for my pump because my pump needs these to function and I can’t just go out to the store and buy them. My husband and I always joke that I can forget my clothes but not my insulin. When I fly I have to carry all of those items with me on the plane so that it can’t get “lost” in transit, also insulin is temperature sensitive because it is alive. Insulin can be refrigerated and kept for a long period of time, but once it is room temperature it is only good for 30 days and once it warms up you can’ t stick it back in the fridge. The cold will kill it. Not good, not good at all and we all know the belly of a plane is not heated. Flying with me is super fun with all my needles, fun, and TSA, but that is a topic for another day. So I am a carrier of sorts. Don’t worry, it is not so bad and one thing is for sure; if you are with me you will never go hungry.

Day 14-

As Jaime Fox would say “Blame it on the a-a-a-a-alcohol.” That’s right; that ever so fun drink that makes you all warm and fuzzy. So you ask, what does alcohol have to do with T1D, well, it gets a little crazy. You see straight alcohol, clean and clear will actually make your BG drop, like a stone.. or can make it drop slowly for a while, or drop over and over again for hours, or can make it drop hours after you have finished your drink if you have T1D. Why? Great question! So when anyone drinks alcohol their liver identifies it as a toxin and then the liver stops doing its regular jobs to break down the alcohol until it has been removed. One thing the liver stops doing while it is concentrating on the alcohol is releasing glucose into the blood stream. So if you have T1D and your BG is dropping, you liver won’t release that normal little dose of glucose so then you can go into hypoglycemia. This gets super dangerous because sometimes a T1D can be assumed to be “sleeping it off” and really they passed out from low BG and if nothing is done to revive them, like getting them to drink juice if they can drink, a Glucagon shot, or calling 911, they can die. This can happen and does happen. Oh and there’s more. So say I decided to have a nice sugary drink, which I don’t because ewww! But let’s say I do. The carbs in the drink will cause my BG to shoot wayyyyy up, because I can only eat 6, yes 6, carbs without insulin. Most sugary drinks, say a large 32oz margarita, has 122 carbs. A 122 CARBS!! That is almost as much as I eat in a day, like a whole day. So after my BG shoots up, then it comes crashing down, maybe 5 hours after the drink, maybe while I am sleeping and still drunk, maybe the next day… the point is you never know exactly when it will happen. If I were to drink a clear liquor like gin, and yes I actually like gin, there are very little carbs in gin, so it would just make my BG drop, unless I were to add tonic. But tonic is chuck full of sugar so I don’t. Yes, I drink gin on ice, straight. Wine is a whole playing field of pain-in-the –ass. If I want to have wine, I have to drink a very very veeerrry dry wine because after all wine is make of grapes which are very high in carbs. So for instance I can do Pinot Grigio, Champagne, Cabernet Sauvignon, or Shiraz. Also the higher alcohol content, higher than beer is what I mean, can make my BG drop quite nicely. That leads us into beer. As we all know beer is chuck full of carbs. Except for the low carb beers of course, but I really think they taste like piss water. Sorry if you don’t agree, but you can have mine so we will both be happy! Sure beer has alcohol but not very much and even though it can make my BG drop a little, the carbs overcompensate for it. Unless you are drinking a Russian Imperial of course, which I did by accident, it was yummy, but wow! I like beer, real beer, dark beer, so I usually only drink one or a half of one. So sad right? But as I think you have figured out by now, when you have T1D drinking is just a pain in the ass and exhausting. So I really just don’t much anymore. Also most of the time I am so tired, if I do have a drink I just want to go to sleep. I have talked to quite a few other T1D friends and they feel the same way. I am not saying I never drink, just not very often, but when I do I make sure it is a good quality drink. If you can only have a little, you’ve got to go with the good stuff; top shelf, craft beer, and good wine.

Day 11-

To laugh, to joke, to giggle… They say laughter is the best medicine and I truly believe this is true. So today I am going to talk about humor. As you have been reading these you are realizing how dire, serious, and exhausting T1D can be, and we haven’t even gotten to the worst parts yet and I haven’t even been including all of it, you all have been getting the shortened versions. Yes, really. One of the ways we cope is making jokes about our situations.. for instance I have a coffee mug that says, “I run on coffee and insulin” I also have a shirt that says “I shoot up to avoid getting high”, I think these are hilarious, and it is totally true. I know it might make some that are unfamiliar with T1D uncomfortable, but if we are laughing you are totally allowed to laugh. See this is our reality 24/7 so to survive mentally we with T1D have to be able to make light of this horrible suck-ass disease, because this disease makes life so real all the time. So our humor might be a little dark, but so is this disease. This concept applies to anyone with a serious disease, if they are joking about it, listen and laugh with them. We need it sometimes and we need the support, because it can be very, very lonely. Now, I want you to understand that jokes ABOUT diabetes that may be on, let’s say, SNL are NOT FUNNY. Not only are they usually TOTALLY INACCURATE, they hurt. Remember there are people of all ages with T1D, babies, kids, pre teens, teens, young adults, adults, seniors, and we are all tired of the jokes. Well maybe not the babies, but if they understood they would be. Recently Jimmy Kimmel joked about donuts received from Kelli Ripa giving him diabetes. I am pretty good-natured about stuff, but dude, really. It is a stupid joke and he is supposed to be smarter than that, I mean he should be able to think of something funnier. So I challenged him to be a T1D for a day. Wear a pump, (they can be filled with saline), count carbs, check your BG, and I don’t think he would make it. Yes, I really did challenge him. The point is, as a culture generally we don’t make fun of those with a disability. You don’t hear someone making fun of a quadriplegic, because that is seriously wrong and horrible. Just because T1Ds look like we are health and OK doesn’t mean you can make fun of us. Yes, I totally understand most of the time they mean to poke fun at T2D and that commercial where the guy is saying “Diiiiabeetus” is horrible and slightly funny in a wrong way, but it doesn’t make it ok for celebrities to make fun of either T1D or T2D, Both diseases are hard folks and news flash, both can kill you. So, a refresher, a T1D joking about their daily struggle, it is ok to laugh. A celebrity making inaccurate jokes about the disease, NOT OK.