Thursday, May 1, 2014

The faces of T1D

         
         Diabetes is not a disease that follows an exact formula. Every T1D has different experiences, feelings, and emotions. I decided to come up with a questionnaire for my fellow T1Ds to see how they feel about the disease. I wanted to get an inside look at how others cope and maybe learn something from each of them. I was blessed to have gotten responses from people on very different points on their journey with D, some recent diagnosis's and others that have lived with it for well over half their lives. I still consider myself a newbie after 3 years, after all my D is still just a toddler as my friends remind me when I get upset. Someday this will be my "normal" but for now I just live in the present and try not to worry about the future. I have to admit that when I first read through the responses I did get a bit teary eyed, not because I was sad or felt sorry for us but because of the harsh reality that each and every day is a struggle in some way. Here is a sneak peek into the life of a T1D....



Female age 17, T1D 1.5 years 
Age when diagnosed? 15
Do you prefer shots or the pump? I would prefer shots over pumps only because  the pump doesn’t do the inconvenient part of checking my blood sugar for me. The idea that I may not be able to wear a tight dress and that people may be able to occasionally see it on my hip makes it even less appealing to me.
Pump type? N/A   
What a high feels like in your own words… My highs don’t necessarily come with a feeling but they come with inconveniences that allow you to know that you have diabetes. The peeing every hour, the constant need to eat, and the extreme thirst seems to be the worst of the highs. The highs tend to be the most embarrassing because the constant need to eat with no satisfaction. Though my highs tend to stay around 300-400 I once had a blood sugar that caused the glucometer to read "HI", not even giving me a number.
What a low feels like in your own words… My lows start with a feeling of heat and aching in the neck. The lows create a feeling of heat around my brain stem almost as though they are going to disconnect. The shaky hands are a dead give away. I find my self frustrated with little things that people do and only wanting to be alone in bed. They cause me to not be able to walk if it is bad enough. If i have a low in the middle of the night is it very good about waking me up. In the beginning of my diagnoses I had a low probably every 3 nights and every one woke me up. They wake me up with sweats and a rapid heart beat.
Favorite injection site for shots/infusion sets? My favorite injection site is my stomach. My stomach is easily accessed and has enough fat to the point that it rarely hurts to inject.
Preferred ways to treat lows? I treat my lows with a bag of skittles. It’s easy to shove large amounts of candy in my mouth. In the beginning I would wake up at 2 a.m. and spend the rest of the night in the kitchen with a counter full of wrappers.
What is more annoying high BG or low BG? I would probably say that High Blood Sugar is more annoying than low only because i become an inconvenience with always having to use the restroom and always needing something to drink. I would say that low is bad but only because it wakes me from my sleep.
Worst part of D? The worst part is the motivation that you need to take care of it. Always being told that you are going to ruin your life if you don’t take care of it but just wanting to be like everyone else, and not even have to worry about that kind of stuff. And possibly the expenses that come with the disease.

Female age 20, T1D 3 years
Age when diagnosed? 17
Do you prefer shots or the pump? Pump, I just feel normal with it on, I do not even feel it as it has become part of me both physically and mentally. I had to go back to shots for 48 hours when my pump malfunctioned and it was bad news. 
Pump type? Medtronic MiniMed Paradigm with Dexcom CGM
What a high feels like in your own words… Brain dead, slow, crabby, nauseous, have to pee
What a low feels like in your own words… Tired, shaky, lightheaded, easily annoyed, hungry  
Favorite injection site for shots/infusion sets? Stomach
Preferred ways to treat lows? Apple juice, glucose tablets, almonds
What is more annoying high BG or low BG? High BG usually because it can linger for several hours and really knocks you down. Certain lows that keep getting lower instead of higher are also awful.
Worst part of D? Not being in control. The unpredictability really gets to me because one moment things can be fine and the next I could be averting some sort of disaster. Being a perfectionist does not help and I often blame myself for things that are really out of my control.

Female age 17, T1D 4 years 
Age when diagnosed? 13
Do you prefer shots or the pump? OK with both, but pump is more convenient
Pump type? Omnipod 
What a high feels like in your own words… Brain and body disconnect. It is hard to concentrate and sometimes I feel sleepy. 
What a low feels like in your own words… dizzy, super hungry, really shaky, out of energy 
Favorite injection site for shots/infusion sets? Lower back and stomach    
Preferred ways to treat lows? Glucose tablets and juice
What is more annoying high BG or low BG? Low BG is more annoying because sometimes I just feel so super hungry and shaky for half an hour.  
Worst part of D? Days when I have to keep taking glucose tabs to avoid going low on the ice since I skate 5 hours a day. It can get annoying!


Female age 17, T1D 9 years 
Age when diagnosed? 7
Do you prefer shots or the pump? Pump 
Pump type? Medtronic
What a high feels like in your own words… Thirsty, anxious  
What a low feels like in your own words… Tired, shaky
Favorite injection site for shots/infusion sets? Legs     
Preferred ways to treat lows? Juice  
What is more annoying high BG or low BG? High BG   
Worst part of D? Constantly monitoring how you feel and always checking your blood sugar. 

Female age 21, T1D 12 years
Age when diagnosed? 8
Do you prefer shots or the pump? Pump
Pump type? Medtronic MiniMed Paradigm
What a high feels like in your own words… sick, tired, crabby, no focus, stressed/anxious, AWFUL
What a low feels like in your own words… Drunk, sweaty, shaky, dizzy, weak, hard to breathe 
Favorite injection site for shots/infusion sets? Hip 
Preferred ways to treat lows? Juice 
What is more annoying high BG or low BG? Depends- highs take longer to recover so you feel absolutely awful for a longer period of time. Lows are inconvenient if I’m trying to do something physical because I can’t work through them. You actually have to stop what you’re doing to treat a low but not to treat a high. So they both suck.
Worst part of D? Trying to explain D to people who just don’t quite “get it”.  It’s a livable disease and I try to live it as normal as possible so most people don’t see the affect it has on my life and how much of a struggle it is because we try to show that we are strong.

Male age 26, T1D 16 years
Age when diagnosed? 10
Do you prefer shots or the pump? Pump
Pump type? Medtronic MiniMed Paradigm
What a high feels like in your own words… dehydrated, sick to the stomach, overtired
What a low feels like in your own words… Shaky, incoherent, tired, really irritable
Favorite injection site for shots/infusion sets? Stomach
Preferred way to treat lows? Whatever sugar I can find and some kind of complex carb  to go with it
What is more annoying high BG or low BG? Not sure
Worst part of D? going to the doctor

Female age 49, T1D 38 years  
Age when diagnosed? 11
Do you prefer shots or the pump? Pump
Pump type? Medtronic MiniMed Paradigm with Medtronic CGM
What a high feels like in your own words… sick to the stomach
What a low feels like in your own words… confused  
Preferred ways to treat lows? Glucose tablets, careful not to over correct lows.  
What is more annoying high BG or low BG? Lows are more annoying especially when I’m figure skating because it becomes dangerous.
Worst part of D? I’ve learned to deal with Diabetes after 38 years but the worst is people who just don’t understand and don’t want to. I have a mother-in-law who insists on giving me sugary drinks and food even after 25 years.

Female age 59, T1D 56 years 
Age when diagnosed? 3
Do you prefer shots or the pump? I used one shot per day of long lasting insulin for 22 years.  Used 4 shots a day or more as needed, with regular insulin for 4 years and then a pump.for the past 30 years.
Pump type? Medtronic MiniMed 530G and Enlite CGM
What a high feels like in your own words… I have always been extremely brittle, with sugars moving quickly in both directions. Lows in the 20's highs in the 300 to 400 or so range. I have had diabetes for 56 years and the high and low feelings have changed much over the years.  I always "feel different" but sometimes a high feels
like a low and a low feels like a high.  Soooo I often have to take a blood test to be sure of what is really happening. Highs can be feelings of anger or frustration or a sick feeling in my stomach, when I drink water it stays in my stomach but the thirst is not quenched.
What a low feels like in your own words… I sometimes get black dots before my eyes, or I feel a bit off, or I am dizzy, or can't make up my mind.
Favorite injection site for shots/infusion sets? When I took shots I preferred the outside of my arms and legs.  Now that I am on the pump I use the lower abdomen for most of the time and the lower rib cage sometimes.
Preferred ways to treat lows? I usually treat lows with glucose tablets when I am not home.  At home I use fruit juice or a small candy bar.  I do have to be careful as I can easily over correct lows.  It takes along time for my body to acknowledged
the correction!  It used to takes minutes to feel better, now it takes 20 minutes or more to feel better or normal...  it is very frustrating.
What is more annoying high BG or low BG? The lows are much more trouble as it takes 20 or more minutes to read again or get back to gardening or whatever I was doing when it started.
Worst part of D? The most frustrating thing is that between the doctors and myself, I am still brittle. I have had diabetes all of the life I can remember so I just deal with it. All is well... 


      My first observation after reading through all the responses is that I am not alone when I say being low makes you SHAKE like a freaking leaf. It's interesting how many came up with similar or identical adjectives to describe different symptoms. Being sick to the stomach was the most common high symptom along with a brain and body disconnect, which I totally can relate to. The funny thing is the low and high symptoms are practically interchangeable which always freaks me out and is the reason why I am unsure sometimes if I am high or low.
     The sobering part of this analysis was the discussion of the worst part of D. It breaks my heart that one of the greatest annoyances is how outsiders view us. They don't always understand that we did nothing to cause this, we can eat anything we desire within normal limits, and we are as NORMAL as a human can get. There is enough crappy aspects of D, and it would be awesome if everyone could just "get it", but that is not possible in our current society. That is why I am so involved in advocating and educating about T1D. One interviewee said it best when she stated, "I try to live it as normal as possible so most people don’t see the affect it has on my life and how much of a struggle it is because we try to show that we are strong". That is definitely how I feel about the disease, but I also think it is ok not be strong all the time, it is good to talk about it and find new solutions. I am so thankful for the Diabetes Online Community (DOC) which as provided me with much guidance and many laughs over the last few years. It is never too late to get involved.
    This project allowed me to interact with many diabuddies, those that I already knew and I also had the opportunity to talk to new ones. It always gives me a renewed outlook and reminds me that I am never alone. We are in this together on a daily battle against the D-monstor, armed with our insulin pumps ready for battle. The world better watch out!!
   Over the next few weeks, I would love to have more questionnaire's filled out so if you are interested please contact me. 

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