Marble Slab

As I may have mentioned many times before, we go to RedBrick Pizza every week or two for their delicious gluten free pizza.

A few doors down from them is a Marble Slab Creamery.  A couple months ago I gave in and we stopped there for some dessert.  I explained C’s celiac disease.  I asked to see their ice cream ingredients, I asked them to use a clean scooper and I asked them not to mix C’s ice cream on the slab, just to put the toppings on top.  Like toppings.  They gave him an extra big bowl so he’d have room to mix his own gummy bears or sprinkles or whatever it was he had.

Since then, we’ve gone a few times.  Maybe 5 or 6?  It not always the same person working, I think we’ve come across two or three people.  The last time we went in something magical happened.   As I was about to order I noticed her walk over and grab a clean scoop, I didn’t think much of it.  Just thought it was time to grab a new one.  I ordered “one scoop bubble gum ice cream with gummy bears…”

She cut me off.  “Not on the slab, right?”

She remembered us!  Can you believe that?  It was so rad realizing that the more we go out, the safer C gets.  The more people we inform of his needs, the more people will help him.

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Team Party Time Again

 

Last night I received a mass-email from E’s soccer coach. He was telling us that he got coupons for free pizza from that same nightmare pizza place I spoke about before. Most teams locally have their party there because they give free pizza/drinks.

I was torn about whether or not I tell the coach our big schpeal about why we won’t step foot there or if I should just not tell E about the party and call in sick at the last-minute. I decided to do a little schpeal.

I emailed him and said that I thought the idea of a team party was great, and that I didn’t like to be the party-pooper but that we’d had personal issues with the owner of this particular joint and would not be going into her restaurant again. I also told him that we normally don’t go to pizza places due to my other son’s celiac disease and need to be on a gluten-free diet. I told him that RedBrick has a great gluten-free option and that was really the only place we went for pizza (our first team-meetup happened to be at RedBrick without me even suggesting it).

Today, I received another mass-email from the coach to the team asking if Tuesday at 6:30 would work for everyone and stating that we were planning on moving the party back to RedBrick since that’s where our team began anyways.

I sent him a thank you and told him we’d definitely be there. It’s crazy how just a little accommodating gesture can make you feel so good. That and the fact that I took 7 other families out of that crazy bitch’s restaurant!! Score 2 for me!

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I don’t FEEL like educating!

We don’t deal with too many people saying ignorant things or being rude or not understanding C’s autoimmune woes.  I just realized that maybe it’s because we’re not all that social.  We have such a small circle of people we’re around and it seems that a bunch of them have diabetes themselves or in their family anyways.  We dont’ really ‘get out’ much.

Remember that awful look I gave the basketball coach for suggesting he ‘go to the bathroom’ to test?  Ugh, gross.  Well, at that God-awful basketball party we recently attended there were some other things getting on my nerves.  It really was THE shittiest party we’ve been to to date.

When we arrived we were among the first 3 or 4 families to get there.  The waitress came out and I overheard her talking to the coach and team mom about when they should bring out pizza and all that good stuff.  She rattle off different kinds of soda and asked what she should bring out.  Coach replies, “Bring out a pitcher of Pepsi, Sprite and Root Beer.  We’ve got a diabetic though, so we’ll need a glass of water for him.”  C didn’t hear this so I decided not to say anything at that point.  I was already in sort of “protection-mode” knowing that we were in a pizza place and C already felt like an outsider.  A few minutes of steam brewing in my head later I said, Hey, you want a diet coke or something, or water, or whatever?  He goes, water’s good.  Phew, no scene necessary.

I KNOW that these are the times when I’m supposed to EDUCATE people.  But sometimes I feel like they’re going to nod in agreement with everything I say, smile sweetly, and not hear a thing.  I had this feeling this night and didn’t feel like dealing.  Sometimes I’m on the edge of bitchiness and don’t feel like getting pushed to the dark side.

After the pizza, Coach stood up and gave a quick little speech about each kid and handed them a cookie.  Not just any cookie, these were lemon-flavored, basketball-decorated, gluten-filled delicious-looking cookies.  Player names and numbers on them and everything.  I told C to smile and accept the cookie and just bring it over to the table (we’d brought a GF cupcake from home anyways).  So C gets called up and his introduction is made.  Coach hands him the cookie and says, “You can give this to your brother.”  UGh.  I knew the routine.  It was annoying anyways.  I don’t know what else I could’ve expected that would’ve worked better.  Maybe it was the only option, it just felt shitty to watch him get handed something and be told he can’t have it.  I hate celiac disease.

Afterwards, the team mom comes over and offers us more cookies.  We declined and she apologized for  not remembering that C had diabetes when she’d ordered the cookies.  I sweetly let her know that people with diabetes can definitely eat cookies, however C also had celiac disease which meant he couldn’t eat things with wheat, rye or barley.  That means anything with flour like pizza or cookies.   And there it was that sweet smile and nod that looked just like she hadn’t heard a thing I said.  Her reply, “Well I’m just glad YOU’RE thinking, because I certainly wasn’t.”

Ummm, ya.  Of course I’m thinking about it.  Why wouldnt’ I be?  And I would never have expected her to think about something that she didn’t know.  Thanks for that meaningless reply though.  Blah.

On the flip side, sometimes people around us getting bits of education all on their own.  To me, it feels like it’s because they care enough to open their minds and notice it more.  Last night I went out with a good friend of mine.  He excitedly tells me that he heard on the radio about some “amazing miracle treatment for diabetes.  Artificial pancreas or something??”  When people around me report to me things they’ve heard on their own, not from me it’s like the best gift they can give me.  I like when I don’t HAVE TO  educate, I just open them up to something new to pay attention to.

Not Welcome Here

So C’s basketball team had their end-of-season party tonight.  At a local pizza place.  Regular pizza.

We considered not going, but I decided to take him anyways.  I called ahead and asked if they offered gluten-free pizza and was told no.  I told them my son’s team was coming in and he had celiac disease, would it be ok to bring outside pizza that was gluten-free for him.  The answer was and enthusiastic “Absolutely.”

We stopped at our local RedBrick (we LOOOOOVVVVEE RedBrick’s GF pizza!!), grabbed a pizza and headed to the party.  We sat down and I told the waitress that we had outside pizza, explained why and that I’d called earlier to make sure it was ok.  She was great, “Of course.”

One and a half HOURS later, she comes back and says, “Sorry, but she’s really upset that you brought in pizza from somewhere else.  She said it’s too late this time but you can’t bring it in again.  So next time-” I cut her off there and said we wouldn’t be coming back again.  I was pissed.  How embarrassing to call us out in front of everyone we came with and make a kid feel even more different when it’s already over.  There’s not a lot we can do 90 minutes after the fact.  My mom asked if I wanted to explain to ‘her’ (who I assumed was the owner complaining) and I didn’t.  I’d already spoken to two other people there and didn’t want to deal.  With that another mom mentions that her son has celiac disease and she’d brought in a gluten-free crust from home and they put the toppings on and cooked it for her.  I was like, Dude, why didn’t they give me that option when I called?!?!  She told me she goes there all the time (most sports in our town have their parties there.  If you show up in uniform you get free pizza).  So clearly, if she’s there as much as she says she is, they should know the routine, right?!

As we leave and are paying the woman/owner comes up and says (YELLING), “What were you thinking bringing another restaurant’s pizza into my restaurant?”  I again explained celiac disease and that my son couldn’t eat their food.  I told her that I’d called ahead and that I checked with our waitress when we arrived. 

She told me that the other mother does it right having them make the food.  I told her it would’ve been nice for her employees to have suggested that option being that she’s a regular customer and I was calling asking what my son’s options were.  Her reply was that she’d be sure to put a sign on the front door so it doesn’t happen next time.  None of this sounded nice.  She was so beyond pissed and totally yelling at me in front of like 50 other customers.  I told her not to bother with the sign for me because we wouldn’t be back.  She goes, “Real nice, after I just fed your kid for free!”  MY response? “HA!!  YOU didn’t feed my kid, I had to bring his pizza from somewhere else!  By the way, thanks for making us feel so welcome in your fine establishment!”

Now my kids are wondering what the hell is going on.  I was so pissed.  We bought a pizza, a salad, drinks, the works for the rest of our family.  It wasn’t like we were mooching off this bitch!  (We also threw out our leftovers we were going to bring home at that point)  So I’m trying to explain to my kids that some people are assholes plain and simple.  Some people shouldn’t face their customers if they have no customer service skills.  If they’d told me up front about the option of bringing my own crust and having them safely make my son a pizza, we would’ve been customers for life.  I would’ve been thrilled knowing that three blocks from my house was a restaurant trying to be accommodating.

She should’ve reprimanded her employees for giving me the wrong information instead of yelling at me in front of an entire restaurant full of people.  Fuck her, she’s lucky I didn’t cram our leftover pizza in her face like the Three Stooges with a creme pie.  Although I was tempted, hence it hitting the trash can before I got the chance…  UGHHHH!

Did I mention…

I LOVE REDBRICK PIZZA!!!!!

D-Sib Day

Well, Alexis and Sherry have proclaimed today to be Siblings of Diabetes Day.  I figured I’d write about E, but have been so busy it hasn’t gotten done.  I’ve hardly even been on a computer.  Good thing is, it hasn’t been because of diabetes.  I’ve been working, playing with the kids, eating Thanksgiving dinner, going out, you know… living?

Anyways, it’s today and it’s 10:30am right now.  My little E is still snoozing.  In  MY bed.  I cleaned up his mess that he’s scattered all over my living room this morning while he was nice and cozy.  I guess I’ll call that his special treatment today?  Poor kid.  Honestly, we don’t celebrate much around here though.  There’s too much always going on to add in any extra.  We celebrate Christmas, but everything else is pretty minimal.

My sweetie really is, just like most siblings thrown into this life, an amazing supporter of his brother.  He makes it near impossible for C to feel alone.  E loves to test.  Under 100?  You’d better believe he’s going to call it low and demand some candy…  E always checks to be sure foods are gluten-free.  There are a few things in our house that aren’t.  If E has those, he’s always sure to eat on a placemat on the far end of the bar to make sure crumbs are kept under control.  He likes to know how many carbs he’s eating.  Sometimes I realize he also suffers from ‘diabetes-brain’ when he notices things that remind him of a test strip, or a blue circle, or a glucose tab, or mentions what number he thinks a lancet would have to be on if his little cousin had to test

On the trampoline, when suddenly C lays down and can’t get off, E’s extra loud voice is heard screaming for me as he runs inside to get a juice box.  E has a pack on his bike that he keeps a roll of glucose tabs in just in case.

After our pump trainer left last January, E was the first to get excited enough to stick an infusion set on (not inject though) and wear that pump for the next hour or so.  E tells everyone he meets about diabetes and celiac disease.  Like everyone else’s ‘other’ children, he knows all the science, real words and possibly every fact that I know about them both and always surprises people with his knowledge.  It warms and breaks my heart at the same time.  Sometimes, when C wants to go somewhere without me, I feel fine about it as long as E is there.  I know that in an emergency E would know exactly what to do or how to explain the situation to someone who could help.

Because we’re a part of a local group that tries to get together monthly and most of the kids are much younger than C, E actually has a number of good friends living with diabetes as well.  Some have it themselves, some have a sibling with it and some have a parent with it.  It’s all very normal to him.

No, we’re not going to do much celebrating, but E is always told how proud I am of him being so supportive.  C is often reminded how lucky he is to have E on his side and even though it’s not that often that he shows it, I know he’s thankful for him.

Thankful for Our Team

When C was diagnosed with diabetes, the hospital told us we would follow-up with an endocrinologist at UCLA (an hour+ away) and we would go there quarterly.  Later they came in and told us we’d be seeing another doctor instead.  She was in our city but was not an endocrinologist.  She was a regular pediatrician, but specialized in diabetes and ran a pediatric diabetes clinic once a week.

I wasn’t sold.  I’d only known what diabetes was for about 3 days and now they want me to go to a regular doctor instead of the endocrinologist I’ve been reading he should go to?  They assured me it would be fine.  The first time I met her, I knew she was the right choice.  She laughed with me at my panicking and helped me to relax (this was 5 days after leaving the hospital).

Dr. S ‘gets’ me.  She laughs at me when I’m nuts.  She doesn’t take offense at the humor I tend to use or my constant sarcasm.  She understands which things I take very lightly and the things I take very seriously.  She understands that C is 11.  She understands that if I find a stash of candy hiding in the back of our Tupperware cupboard that I should be thankful that sugar is all he feels he needs to hide from me.  In fact, her suggestion was to fill that stash spot with his favorite candy.  Just make sure to leave the carb count in there as well.  She speaks to C directly, understanding that HE is her patient and HE needs to be a part of all decisions.  Although she does not have diabetes, it is in her family.  Her sister has celiac disease.  I have not only her home phone number, but her cell.  She was fine with the fact that it’s taken me over a year to want to wait 3 months in between visits (this will be our first time… so far it’s been 8 weeks and I’m feeling ok).  She’s been fine with the 6-8 week schedule I’ve been comfortable with.  Although, some parents I’ve spoken to feel she’s too controlling, she respects me and will rethink things if I disagree.  She asks C to give her lessons on the Ping since he was her first patient to stray away from her comfortable MiniMed.  She asks us to speak to newly diagnosed parents or parents wanting to start pumping.    She calls C her ‘special patient with a special situation’ to the learning doctors who follow her because he has not only diabetes, but celiac disease and happens to be her only patient with both (by the way, he loves this attention).  She loves how well we’ve adjusted and how much we’ve accepted diabetes into our lives.  Sometimes I wonder if she has any idea how big a part she has to do with that.

Yesterday, we had to go to that original doctor at UCLA (an insurance formality… once a year).  There was nothing personal.  They didn’t share my sense of humor and looked at me like I was weird.  One doctor made a statement, I mentioned that our regular doctor had said the opposite and she said that’s why she recommends ‘not speaking with too many doctors.’  I didn’t like this.  Even though I love ours, I absolutely want to hear other opinions to help form MY OWN.  (At diabetes camp, I made sure I brought all my questions to the doctor there and asked WHY he disagreed with our regular doctor on certain things.  I can’t just put ALL of my faith in one person.)   This appointment felt like an assembly line.  Get in, see first doctor, wait, see nurse, wait, see second doctor, wait, see nurse, wait, see social worker, wait, see nutritionist, make next year’s appointment.  Phew.  Not at all like our normal one.  We see the nurse and doctor who KNOW us.  They ask about my other son BY NAME.  The nutritionist peeks her head in during the appointment to tell me she tried the gluten-free pizza I recommended last time and agreed it was DELISH!  The gastroenterologist walks down the hall and sees us.  On his way to his patient asks how everything’s been going diet-wise.  On our way out we might run into his general pediatrician who recognizes us and asks how both boys have been doing.

It’s clear that your team can make or break you.  Their attitude will shape yours.  There are amazing doctors out there.  My family is truly blessed that we have found not only an amazing endocrinologist (well, general doctor specializing in diabetes…), but gastroenterologist and even pediatrician.  I really don’t want to think of where we’d be without their support.

Restrictions

I hate celiac disease.  I try so hard to convince people that C can eat whatever he wants with diabetes.  Then I have to explain that he can’t actually have that but that it’s not because of diabetes.  I think people are lumping them together most of the time and think he’s got one issue.  I’m not one to get annoyed at “stupid questions” about either.  I love it.  Ask me! Ask me anything!  I WANT to tell you the reality.  And if I ask you something “stupid” about your issue that I’ve never dealt with I expect the same patience.  There’s no reason to get upset about someone asking how long he’ll have diabetes or if he can take something to counteract the gluten. 

Enter my sister and her family…  They refuse to get a clue.  Her son came over once  and tried to tease C with candy.  He was truly surprised to hear that C could eat it.  It infuriated me that he’s been taught NO compassion.  Here he thought C was never allowed to eat candy so he waved it in front of his face.  She has her children’s birthday party’s at our house most of the time because we have more room.  When I make their cakes, of course they’re going to be gluten-free.  They’re fine.  They’re good.  Maybe not the best cakes ever, maybe not the moistest, but they’re fine.  My sister’s comment, “It’s alright, but I can definitely taste the gluten stuff.”  Ummm, no you can’t idiot, it’s gluten-free.  sigh…

Today we went to her daughter’s 6th birthday party.  There was pizza and cake which he couldn’t have.  We brought our own gluten-free cupcake and made do.  At the end, she gave me two goodie bags for the boys, marked with their initials.  I peeked in C’s and was surprised my sister didn’t put any candy just stickers and stuff, she ALWAYS puts candy.  Then I checked E’s… sure enough, candy.  I was so pissed that for a year I’ve been trying to educate her and she hasn’t listened to anything.  I asked her if she had any extras and she said they were all at home.  She didn’t know what he could have, so she left it all out.  I get it.  I understand not knowing what to do, but really?  Give him a blank goodie bag when he’s got a brother with a bunch of candy?! 

I split them up so he’d be unaware.  It definitely would’ve bugged him, no lunch, no cake, no candy… sheesh!  Involve a kid!!