And now you know... the REST of the story

Awhile back I posted a snippet about our awful experience with the TSA when we flew out of DFW airport.  I've been wanting to finish the story, but every time I tried to start, I'd get so freaking mad all over again.  

I figured it's about time to commit it to paper, lest my pregnant brain decides to get even more forgetful.  The story may run a little long, but here it is...

It all started as soon as we approached the security checkpoint.  Like any good (read: paranoid) person, I had printed out pages from the TSA website pertaining to anything related to kids, diabetes and travellers with disabilities.  I was fairly confident I knew what I could request from the TSA, and what I could expect.

I explained to the first woman that my daughter had type 1, and that I was okay with most of her supplies going through the scanner, but I'd prefer it if her pump didn't, and I wanted a visual inspection done of her pump supplies and PDM.  Which should have been okay, according to what is printed on their website:

"If you are concerned or uncomfortable about going through the walk-through metal detector with your insulin pump, notify the Security Officer that you are wearing an insulin pump and would like a full-body pat-down and a visual inspection of your pump instead."

My request was greeted with a look that suggested I had asked if I could run through the scanner naked and she replied she would have to ask a supervisor.  Meanwhile I put everything (except her extra pods and PDM) on the belt, while Fred and Mattias walked through the scanner, leaving Elise and I on the unsecured side.

We waited for about 5 minutes, then were rudely told to stand back ("no, over there... move back.  More.  Even more. You need to be out of the way").  I asked what the hold-up was and was told that they had to locate someone who could tell them what to do.  Meanwhile, Elise was getting upset and started to cry.

Let me interject that I had been nothing but calm, but Elise is just a very sensitive kid and can pick up on nasty vibes.  She told me if she could have Pinky (her stuffed bear), she would be okay.  Unfortunately, Pinky had already been scanned and was sitting on the secure side.  And they wouldn't give a crying 4 year old her stuffed bear back.  Nice.

Another agent (a guy this time), came over and asked me what the problem was.  I repeated my request, telling him he could see the information I had printed out from his agency's very own website, but he declined; again asking me what the problem was.

I told him I wasn't comfortable with putting what amounted to my daughters life support through the scanner and I wanted a visual inspection. He pointed at the PDM and said that it was fine to go through the scanner.  He seemed to be under the misinformed impression that it was a meter.  I told him that the PDM controlled the pump and if something happened to it, the pump itself was useless. He had trouble grasping the concept and walked back to the secure area.

So far me and my pregnant butt had been sitting on the cold, hard floor with a weeping child for about 20 minutes.  Elise starts wailing that she doesn't feel good, which is a sign that she may be low.  I wave at Fred to get his attention and tell him I need her diabetes back, which had already been scanned.  The guy tells Fred that he can't give me the bag, because it's already been cleared.  That's right, he was trying to deny my daughter the right to test her blood sugar.

Fred argues with him and tells the guy that Elise might be low and she HAS to check her blood sugar.  To which the guy replies, " she has to check right now???"

Fred says yes, grabs the bag and hands it over the partition to me.  It turns out she was in the low 200s, most likely from the stress, so I correct her and we continue to wait.

About 25-30 minutes after we first approached the security checkpoint, Elise and I were allowed back to the secure area, but we had to continue to wait while they swabbed EVERYTHING that was in our bags.  At least Fred and I were together.  By that time a suit had arrived with a giant binder and proceeded to try and figure out what to do with us.

It turns out the problem is that they can't pat down a child.  Ergo, they couldn't do a proper inspection on my very threatening 4 year old child with type 1 diabetes.  We had to wait another 30 minutes, and by that time we had missed our flight. 

The whole experience was awful and scared Elise so much that when it came time to come home, she started crying when it was time to go through security again.  Except at SFO, we had no problems at all (even though I requested the visual inspection again - yeah, I'm a slow learner), and the woman I dealt with told me that what they did at DFW was wrong.  She also told me that at SFO, it's a privately contracted company that handles security, while DFW it's the TSA.  Interesting, dontcha think?

Since this is getting rather long, I'm going to sum up what has me so pissed off (other than the obvious) in bullet points:

• Don't have something written on your website, then ignore it.  And when someone tries to point it out to you, don't tell them (something to the effect of) "we don't have to follow those guidelines".
• Refusing to give a child her teddy bear makes you a jerk.  And watching her stony-faced while she weeps for 45 minutes makes you a colossal jerk.
• Don't try to tell me what a PDM is for. I think I know.
• I think part of the problem was that the Omnipod was unlike any pump they had ever seen.  It would be nice it they were aware of all pump types.
• Use the brain you were given to assess the situation.  One-size-fits-all rules don't work.  If a pump-wearing 4 year old with type 1 diabetes is considered a threat, then we are all in trouble.

Yes, I realize that I could have made everything easier by just letting her pump go through the scanner.  But I was not comfortable with that option, so I tried to follow the TSA's OWN GUIDELINES and look what happened.  Why was it okay at SFO and such a problem at DFW?

I have yet to file a complaint with the TSA, but it's coming.  If nothing else, another family, CWD or PWD won't have to deal with the stupidity that we did.

A quick hello and why I'm going to kick the TSA in the groin

You may notice things are a bit quiet around here... Fred and I have taken the kids out west and we're hanging in SF for the next week and a bit. The posts might be a bit sparse because I'm blogging from the iPad, which is painful when it comes to formatting. First world problems, right?

You do need to come back, though. I have a doozy of a story about the TSA at DFW airport, and how they watched Elise cry for 45 minutes, refused to accommodate my requests, suggested that  we didn't need to check Elise's BG when she said she felt low and ultimately made us miss our flight.

Somehow, this pregnant D-mama's head didn't explode, but someone is going to get a talking to when I get home.

And this morning I woke up to a fun surprise... My blog was featured on Disney's Website along with Meri and Hallie! You can go here to check it out.  Thanks Kim for such a nice write-up!

Shame on you, Garliq

I've been holding off on writing this post for two reasons; I had to cool off so it wouldn't be so expletive-ridden that it would make Reyna blush, and I kept hoping that the guy this post is about would step up and do the right thing.

He hasn't, and I'm pretty sure I have the self-control to contain myself, so here goes...

You might remember this post. Click over if you want to. If not, here's the Reader's Digest version; we had a fund-raiser at a local restaurant called Garliq. The owner also pledged a good amount of money for Team Elise. He had supported us last year, so there was really no reason to think he would do this to us.

Anyway, the deadline for collecting money was fast approaching, and this guy does a disappearing act on us. Calls go unreturned. Visits to the restaurant are unsuccessful as he is never there. When Fred manages to reach him, the call gets mysteriously "dropped"

So we have yet to see a dime from the "fund-raiser" he held for us, nor any of the money he pledged. And it was a goodly sum, too. Fred and I had to take a hit and pay for part of the shirts out of our own pockets. 120+ shirts do not come cheap.

To top it all off, the restaurant has suddenly closed and we now have no way of tracking this guy down. Supposedly, he's opening up at another location, but I'll believe it when I see it.

Fred and I are so, so ticked (that doesn't even BEGIN to describe it). His restaurant's logo is on the back of our Team Elise shirts, and he did NOTHING to earn that.

Look, I get that the economy is bad. If this was going to be a hardship on him, HE SHOULD HAVE TOLD US. We were in touch with him right up to the day of the fund-raiser, and nothing was said. Instead, he makes promises he can't deliver on, and then hides from us and refuses to the right thing.

You should be ashamed of yourself, Nazir Moosa. This was for CHARITY. You made a PROMISE. It's time to man up, come out of hiding, and deal with this. You owe us (at least) that.

Edited to add: I decided to delete the name-calling from this post. I admit I let my emotions get the better of me, but it's still no reason to resort to childish tactics. It still doesn't change the fact this has made me so unbelievably upset and what this guy has done is wrong. Especially when we had people come eat at his restaurant thinking that part of the proceeds were going to support Team Elise. That is just plain fraud.

Panic

You'll have to excuse me... I'm having a bit of a moment right now.

As in, I'm freaking out. With a capital FREAKING and a capital OUT.

It dawned on me today that my due date is in exactly 3 months, although the actual day will be a lot sooner because of the fact I have to have a scheduled c-section.

And were are so not ready.

We are not ready in the usual ways; we still need a tonne of various baby accoutrements, there are rooms to rearrange, logistics to figure out... a name for the baby. But that's not what has me in the midst of a panic attack.

What really is scaring me is that we have no plan dealing with what to do with Elise when it's time for this little guys arrival.

The original plan was for my Mom to come and help out. That looks like it might not happen, and unfortunately there is no plan B.

Fred's Mom has offered, and I love her to death, but she has never stayed with us for more than a few days. She has never tested a BG, counted a carb, checked for ketones, or given a shot. It just won't work to have her come is a few days early and receive a crash course on diabetes. It's not fair to her, or to Elise.

Laura and Jessica have offered to help, and again... I love those girls, but they have their own burdens to bear. Plus, they both live about 30 to 45 minutes away from the hospital, and that's just too far away for my peace of mind.

Do I sound like I'm being high maintenance? I've struggled with that, but I think it all boils down to this; Elise has never been away from me for more than about 4 hours. And the first time we're going to be doing this is at a time when I'm going through something very stressful (surgery, birthing a baby etc.). I don't think I need an added stress at that point.

I think what kicked all this panic off was the rough night we had on Friday. It actually started when she woke up from her nap at 42. From there she was 70 at bedtime, and through the night we struggled to keep her above 60. We checked her almost every hour, and no matter how many extra carbs we gave her, she kept falling low. It was a nightmare, and who can handle that but the ones who have been dealing with it for almost two years now?

I hate this disease and how it rules our lives. How I can't even look forward in anticipation to the birth of my son, instead fearing and dreading the day because of how diabetes may interfere.

An update on my Mom

Just wanted to post a quick update on my Mom... her condition worsened to the point where she had to be admitted to the hospital. They're saying kidney infection (which is what we were saying the FIRST time we went to the ER, but the doc obviously did not listen).

She's still not feeling great, even after a night in the hospital. As of now, it's 12:30 pm and a doc STILL has not been by to see her. She hasn't received anymore antibiotics other than the ones she got yesterday around 5:00 pm, and all there doing is re-hydrating her and giving her pain meds. Nobody is telling her anything. It is so ridiculous, starting with our ER visit on Saturday, but that's for another post.

Elise and I are on our way back to the hospital now... time to start kicking someone in the groin.

I'm just lucky my head didn't explode

Today, Fred and I were very honoured to be one of the T1 families invited by the JDRF to a press conference to kick-off the Dallas Passport to Health Expo Event that is focused on diabetes. The mayor of Dallas was one of the speakers, along with a Dallas Cowboy, an ex-NFL'er, an adult with T2, and a very well-spoken 8 year old with T1.

What really dismayed me was that all the speakers, with the exception of the little girl, talked over and over about how diabetes is preventable, and beatable, and treatable if you just exercise and eat properly. At no point did they differentiate between the two types.

At one point I exchanged a grimace with another T1 Mom, and towards the end of the press conference, tears started falling freely from my eyes. I was just so frustrated by the ignorance being spouted off.

They just don't get it. There is a difference between T1 and T2 and people need to be aware of it. Before the press conference was over, the mayor asked if there were any questions and it took all my will-power to not pipe up and ask, "are you aware that type 1 diabetes and type 2 diabetes are not the same, and there is no cure for type 1 and no way to prevent it?"

If I had been there by myself, you bet I would have spoken up, but since I was there with the JDRF, I didn't feel it was the right thing to do. Fred felt the same way.

Sometimes it makes me so mad that type 1 has to take a backseat to type 2 diabetes.

D is for...

Done.

As in I'm done.

Done, done, done with diabetes. Done with trying to come up with foods that Elise will actually eat. Done with mealtime battles that usually end with both of us in tears. Done with trying to put together healthy, good-tasting meals and done with carb counting.

I'm so done with trying to figure out numbers that are all over the map. Done with tantrums that are due to high BG numbers and done with naps being interrupted by lows.

I am done with hauling all the crap that goes along with this disease. Done with meters, scales, calculators, apple juice, carefully counted out snacks that she won't eat, emergency supplies, insulin, needles... all of it. Done.

I'm done with every illness wreaking havoc in our lives. Done with worrying about her "underlying condition". Done with calling doctors and specialists and wondering just when should I take her to the ER.

I am done with all the money that this stinking disease bleeds out of us. It seriously makes me sick to my stomach when I think of how much all the supplies cost just to keep my daughter alive. Yes, it's a small price to pay, but it also infuriates me and makes me wonder why they do cost so much. Could it be because we don't have much of a choice?

And I am so, so, so very done with stupid insurance companies squeezing every nickel and dime out of us. Done with their crappy policies that say catheterizing my daughter to get a urine sample because she's too young to pee in a cup during her doctor visit is considered a "surgical procedure" and we have to pay for part of it. This never was an issue with our old insurance company, but Blue Crap Blue Shield of Texas is showing me why moving back to Canada is a good idea.

Seriously, I think my head is going to explode.

Of course, I say I am done... but it's a total lie. I can't be done. I will never be done. And that's what makes all this so terribly frustrating.

Mini Rant

All through last week we had been seeing higher and higher numbers with Elise and it they hit a peak this weekend. All we saw on Saturday and Sunday were numbers mostly in the 300-400 range. Nothing we did worked. We were even giving her 3 extra units of DH at meal times and even then her numbers would only come down to the mid to high 200s.

Figuring we were out of our element, we emailed our numbers to the Endo on Sunday night, asking for help. We never heard back Monday, which is odd. They usually get back to us pretty quickly. Then this morning there was an email in my inbox saying, "We offer review of blood glucose logs to our families on Wednesdays. Please re-send your updated records at that time."

Ugh... sounds like a form-letter response to me. Did they even read our logs? We are well aware that the day to email logs for review is Wednesday, but we stopped weekly emails about 3 months ago; only emailing when we have an issue.

Like we did this weekend. It has always been the case that if we needed help we were free to email our logs whenever. I just hate the overall "snottiness" of this response and it's one of the reasons I hate dealing with such a big practice. I like Elise's doc, but I feel like we're just a number to the CDEs and it makes me mad.

We're real, live, breathing people with a 22-month old that had been dealing with high BG numbers for quite a few days. We tried what we knew and it didn't work. So we reached out to the "experts" for help. And they tell us we need to wait until it's convenient for them.

I am so, so ticked right now. I've decided to wait until I calm down a bit to call them up and yell.

Don't they know you should never make a red-head mad?