Does TSA Really Care?

I only travel on an airplane maybe once a year. I'm not a huge fan of flying. My ears hurt and pop, things usually sound like they are under water after getting off the plane and I have a hard time hearing. I feel like I end up whispering or yelling because I can't tell how loud I really am.
For some reason security always makes me nervous and I don't know why, but it really does.
I'm not afraid of dying from a plane crash or anything, its just all the stress of the above. Then add my lovely companion "D" to the equation and it's all sorts of fun. Wondering if I'm going to go low sometime during the whole TSA check point process and act goofy or run high and end up feeling like crud while traveling.

We just got back on Friday from family vacay to Ft. Lauderdale, it was wonderful!

 

This was my first time flying with my insulin pump. Insulin pumps cannot go through the xray machine, body scanners or scanned with the luggage. Going thru any of these machines will scramble, completely drestroy the pump. You wouldn't think that this would be an issue with TSA but I've read that it can be.  I had read on multiple blogs among the DOC about the TSA Cares program, all of which was good feed back so I decided to give it a shot in hopes that it would alleviate some stress. Unfortunately for me, it seemed pretty worthless. Here is my experience....
We were to leave on Friday the 18th, I called the number for TSA cares 72 hours a head of time as I should have. Government was still shut down, my hopes were not high due to this. I talked to an incredibly nice lady who went over how things "should" go and who informed me that due to the shut down there may not be a passenger assistant to meet me once I got to the airport but she would note it in their system that I was requesting someone. If no one was available I should have no problem just asking for a patdown once I reached the TSA check point is what she told me. Thursday the 17th in the afternoon I received a call from a very nice gentleman at TSA Cares. Now that the government was no longer shut down they would have someone meet me when I arrived at the airport. Call when ten minutes away and he would let me know what to expect, who and where I was meeting someone is what he told me. Sounds good so far right? That's what I thought. Next morning I called like he said. He told me to ask for Amanda Woods when I got to the TSA check point. Okay, great, thank you sir. Get to that point, she wasn't working that day, but if I just let them know right before they ask me to step through the metal detector they will do a pat down no problem. Hmmmm.... Go thru the rest of the line, get to the front and inform the lady that I am unable to disconnect from my pump or go through the scanner or xray machine. She didn't understand, told me first to go down to the body scanner, I said politely but firmly no, I need a pat down please. My pump cannot go through any machine. She then told me to send it thru with my carry on luggage, again asked for a pat down. She still wasn't getting it and told me to just go through the xray machine. Again, I requested a pat down and this time she said she didn't understand. At this point an older TSA agent had walked up and finally intervened. She said she would do the pat down if my husband watched my stuff. She was very nice, explained what she was doing during the molestation, I mean pat down process. I know why they have to get so physical I understand but doesn't mean I'm comfortable with it. Finally, that was done and we were on our way.

This shows how stress totally affects blood sugar levels. Before going thru TSA and after.

Following Tuesday before our flight home on that Friday I received a call from Jim at TSA Cares out of Ft Lauderdale. He was nice enough, but he did mention that their new scanners were safe for all medical equipment to go thru and for everyone's convenience I should just go thru them. I explained to him a second time because he obviously didn't hear me the first time I told him why I was opting for a pat down. I said I understood it may not be the most convenient but I was not willing to take a chance with my $8,000.00 piece of medical equipment. Unlike the flight down he was at the checkpoint waiting for me when we arrived at the airport. He was nice enough I guess, yet after he had arranged for a female agent to pat me down he went into a whole schpeel again about how inconvenient it is to take time out to do a pat down and arranging for a passenger assistant. This takes people away from the stations that they are already working at and they are not always able to pull people right away when they are short staffed. He also said that I needed to do more research before I fly next time and I'll find that all their equipment is perfectly fine for my pump to go through. I'm not sure how many times I had already told him why I would only accept a pat down but by then I just wanted to find hubby and get to our gate. This guy was an awful representative of TSA Cares because he really didn't care. Will I try the program out again? I don't know. It will probably be another year or so before I fly again so it depends on if the program is still around by then and what I read about it in the DOC. My personal experience says that TSA does not care and that just asking for a pat down when I arrived instead of going thru phone calls gets the same results. At the same time I've worked customer service and delt with people long enough to know that the person representing may not necessarily reflect the policies, beliefs and attitude that the organization, company, or intuition would like to have reflected. With this being the case I'm sure that TSA Cares is meant to care, but sadly I didn't receive that experience.

Despite Diabetes

We just got back Friday from a family vacation, more on that later. But over the course of the week I thought about a lot of what I've still done despite diabetes.

As I was standing on the beach tonight with the not quite full moon shinning down on the ocean and feeling and listening to the waves and feeling the wet sand beneath my feet this is what came to mind.

Despite diabetes, I am standing barefoot on a beach feeling the waves.
Despite diabetes I am standing here with the love of my life and enjoying this moment.
Despite diabetes I just had two glasses of wine at our favorite bar/restaurant in this vacation spot.
Despite diabetes I shared a chocolate ganache pretzel dessert that was a little peice of heaven with my hubby.
Despite diabetes I am on vacation with my family and loving every minute.
Despite diabetes I drove 4 hours with my family to Key West and saw the southern most point in the United States.
Despite diabetes I sat in bed with my niece and nephew watching cartoons this morning.
Despite diabetes I got to see my sister's wedding ceremony Friday night.
Despite diabetes I still wear fun shoes.
Despite diabetes I am able to work a full time job.
Despite diabetes I am able to drive and do "normal" things.
Despite diabetes I am able to have a social life.
Despite diabetes I will be a mother someday whether children from my own body or adopted it will happen.
Despite diabetes I am living my life in a way that had I been living 100 years ago I wouldn't have lived probably much past my diagnosis.

JDRF Walk

I know that this is a little late, but better late than never right? For the first time, I did the JDRF walk a couple of Sundays ago. We had beautiful weather! Brad, my mom, my in-laws, my sister and my best friend all came to walk and support me. Our team raised a total of $830.00 which I was so psyched about! I really didn’t know how much to expect so I was very happy with this. We attempted to do the 3 mile walk but somehow they didn’t make the trail very clear so we barely did over a mile. We got there in plenty of time for me to find the vendor’s tent, but unfortunately I didn’t know that this was where Medtronic and Lily would be. They left early I guess if they even showed up because when we got back from walking I went straight to the vendor tent when I found out about it and both companies were gone, only the little signs marking their tables were still there. That was a bit disappointing, I was looking forward to and hoping to see pumps and CGMs to play around with, but nothing was there. I think my city may not be so big into Type 1 awareness and research and things because it’s really hard to find out about anything, so I was a bit disappointed that there wasn’t more there like I have read other cities have, but at the same time not totally surprised. Overall it was a great day and I’m thankful for my family that came out everyone who donated, thank you all!!!

15 Positive Things

I decided to create a list of positive things that have come from having type 1. So here is a list of 15 things that I have come up with.

1. I tend to be more conscious of what and when I eat and not over eat.

2. I'm not being rude when I insist that I have to eat before everyone else.

3. If I'm in an atmosphere where others around me are drinking and I don't feel like partaking I can blame it on my blood sugar that I can't.

4. I have to take my purse with me everywhere, it has all my "D" supplies.

5. I always have a snack or food on me so if you are hungry, I can probably help you out.

6. I've developed healthier eating habits.

7. I sound REALLY smart when I talk about Diabetes to someone who knows nothing about it.

8. I've learned to like a wider variety of foods including veggies.

9. When I'm preggers I'll get to see my baby in my belly more, (ultrasounds) and hear the heart beat of the baby more often than someone without type 1.

10. If I was to dress up for Halloween as a doctor I bet my pump would be a great prop! It would look like a pager!!!

11. I get to tell funny stories about things that happen like my hubby waking up covered in test strips. (I'll never get over that one)

12. I've learned a lot about my body and myself.

13. I cherish life and those I love more.

14. I'm a much stronger person than I ever thought that I could be.

15. When I eat something like apple pie and vanilla bean ice-cream I savor and enjoy it more since it's not something that I eat as often if I didn't have "D".

Side note- I don't know the last time I ate apple pie and ice-cream and I did the other day.  Brad had been asking and asking for me to make an apple pie, it's one of his favorites, was and I guess still is mine too. I've never made one, but I did and it turned out great! I was so proud of myself so I had to have a piece after I slaved away over it. Having it in the afternoon with plenty of hours before bed time and being able to keep an eye on my BG I was able to enjoy without any overnight highs. Every sweet delicious bit was worth not having had any in years.

Low Dreams

I read other's blogging about having crazy weird dreams when their blood sugar drops while they are asleep. As far as I know, at least not that I've noticed, I haven't had that. I have had twice now, with just the other night being the second time, where I have dreamed that I dropped in my sleep and it was bad.

First time, that I remember anyway, was the night/morning before my wedding. I remember I had already of course had a hard time falling asleep because the next day was the BIG day but then on top of it I had a cold so I know it was a restless sleep because I wasn't feeling 100%. I remember it was a terrible dream. I wouldn't wake up, my roommate couldn't get me up and instead of getting married that day I ended up in the hospital and that's where I woke up. I think that I really woke up right after I woke up in the dream. I was low, and I'm pretty sure it was a bad one, I mean a BAD one. I probably over ate when I went to the kitchen, that I don't remember. I just remember sitting in the chair getting my hair done for the wedding and telling the girl who was doing my hair about the dream.

Then, the other night I had another one. At least I think it was a dream, I mean it was so short, but so real, it was almost like a thought but I'm pretty sure that I was asleep. In it I woke up in bed to paramedics standing over me and feeling horrible and disoriented and my husband standing in the corner of the bedroom with a look of sheer terror on his face. I'm not sure what scared me the most in the dream, how awful I felt, waking up to paramedics over me or the look on Brad's face. It seemed just a little too real. I didn't feel low at all when I first woke up, and I really didn't want to make the effort to get up and check, but after having that dream or whatever, I was spooked. So I checked, and I was low at 60. Not awful, but glad I checked. Once I got out of bed and went to the kitchen then I started to feel it and that started to freak me out. If it wasn't 2:45 in the morning and I didn't have to try and go back to sleep I probably wouldn't have had the juice box, I probably would have done something with a few less carbs and checked an hour or so later, but I wanted sleep and was scared that for some reason I was dropping even though I had no active insulin in me and I have no idea why I dropped in the first place. So I had the juice box, waited 15 minutes, checked again and I had gone up to 112 already and felt confidant enough to go back to sleep. I woke up at 7:00 with a BG of 150, not ideal, but I slept and woke up without paramedics or terrifying myself or hubs.

No Time For That

“Betes, you are a royal pain in the …. I got no time for that!” These were my thoughts when my CDE emailed me back this afternoon after I sent her my BG log this morning. When I go into the doctor’s office she downloads my pump and sees graphs and trends. I have the capability to do this as well, but I have never taken the time to do so and I have never been asked to so I haven’t. Now she is asking me to download my pump info to the Carelink online program and send her my log in information so that she can take a look at my trends. Eeeerrrr….. I know this is something that probably really needs to be done, I mean, she wouldn’t be asking if it didn’t, but that’s probably a night that will be spent trying to figure what the heck to do and I’m not sure when that is going to be. Not tonight and I don’t know if I will be able to get to it tomorrow night.  Right now, I just want a night to sit on my butt on the couch and do nothing. Not staring at a computer trying to figure that crap out.

Medtronic has just had their “Artificial Pancreas” approved by the FDA and I’m seeing a lot of people in the DOC with the same feelings as mine. That’s crap! It’s just another marketing ploy to try and get the uneducated T1 consumer to buy their product when all it really is, is a pump with an automatic shut off feature when worn with the CGM that will shut off when a low is coming on. Ok, that’s nice, but I’m not going to get too excited about that. I don’t even have a CGM.

 Now the Bionic Pancreas, that’s a whole other thing that I would give anything to have if I can’t have a cure.  I’m not sure how realistically affordable it would be but, I can dream. How does this tie in with having no time for “D”? Well, if I had a Bionic Pancreas it does EVERYTHING! All that I would be responsible for would be changing out the glucagon and insulin reservoirs. Not only would it save me from all the calculating and memory that “D” takes over in my head but the time would be priceless!!! It’s really weird to me sometimes when I hear how non-diabetics think of diabetes, even those in the medical field. I was telling someone the other day all about the Bionic Pancreas, and when I was done this person just looked at me and said, “Well, then it’s like you don’t even have diabetes anymore, so wouldn’t you be forgetting how to take care of yourself? What about if your insurance couldn’t pay for it anymore and you had to go back to a regular pump or injects? Isn’t that kind of irresponsible? Shouldn’t you continue everything you do now until there is a cure?”. WOW!!! I was speechless, I wanted to flip out, but I didn’t. I decided it wasn’t worth it and just let it go and moved on because it was the type of conversation with the type of person that really was not interested in my answer or what I would have to say. There would be no way that I could educate this person on the topic because it’s basically like they didn’t hear a word of what I had just said anyway. Really thou, I don’t get that train of thought. How could it be irresponsible to want a device to do the work that my dead pancreas should be doing? Especially when it would be able to do a much better job than I can ever do? When it would be better for my health, quality of life and increase my life expectancy? Irresponsible??? Is it irresponsible to want to be able to work out without worrying about going low or high? Is it irresponsible to want to be able to just go to sleep at night without the worry that I’m going to go too low and not wake up? Or not having anymore nights of getting up and checking because I don’t feel good and correcting however I need and then spending the next hours during the night worried because I may have over or under corrected so then I have to set the alarm on my phone so I wake up and check.  Is it irresponsible to want to eat, work out or whatever else may come up  without having to do math countless times a day as well as SWAGS and calculations? Nope, I don’t think so. It would be a God send! A time saver, a sanity saver, a HUGE stress relief. I know 5 years of this is nothing compared to a lot of people, but I don’t have high hopes of a cure, but the all the articles, Youtube videos and everything that I’ve seen so far on the Bionic Pancreas seems hopeful and promising. Bionic Pancreas, bring it on! I got time for that!

***Disclaimer, these are just my thoughts and opinions. I have no medical training or knowledge. Just a type 1 trying to live my life to the fullest on a daily basis.****