Thursday, April 26, 2012

Some Days..

In my life, some days are harder than others. I think the same can be said for the majority of you.

Some days you might get glutened.

Some days you may be tired.

Some days you may be sore.

 Some days, you may just feel like shutting out the world.

Some days, you might feel anxious.

Some days, you might feel overwhelmed.

And some days, you might feel so many things that you have no idea where to start or how to type.

Today, that last one is me. I've been starting multiple blog posts then stopping mid-sentence and hitting save, closing my computer, and taking a nap. You see, like many celiacs, I have other correlated issues. One of them is anxiety. And that means that sometimes, I need to take a step back from the outside world and go inside myself.

I'm doing a 30 day yoga challenge at Prana Yoga Studio. Every morning my alarm goes off at 5:36am (I don't know why, but I hate setting my alarm on the 5 or 10.. it has to be something unique) and I get out of bed, get dressed in all my yoga attire, throw my hair in a ponytail, walk downstairs, pat the dog on the head, get in the car and drive. It takes me 10 minutes to get to the studio where I find out what studio I'm in that morning (there are 2). The first morning was fun; the second morning I was over it. But now, I have completed day 11 and I have yet to miss a day. Physically I'm feeling very strong (and I'm hoping to get some good shots of me in yoga poses outside when it stops being crabby out there) and mentally I find that yoga is forcing me to sllooooooowwww down. This whole slowing down thing is a foreign concept for me. I'm known to be a bit of an overachiever and take on WAY too much. I'm only now learning to say no (and really, I say that almost in jest as I have to really think hard before I say no). But it's fabulous. I haven't had a headache until today in 11 days (that's a record for me). My tummy has hurt once in the last 11 days (I really need to give up dairy). And I feel like I can conquer the world.

Life is full of things to worry about. But yoga is helping me to not worry as much, or to try to think more rationally about each thing before I freak out (I'm not going to lie, my therapist is helping me with that thought process too :) ).

My current freak out? Mr Man. I've already written about how Mr Man was diagnosed with celiac. Now I worry. I worry about how he's going to fair in school. I worry about the impact that this will have on his friendships and his life. I already worried about all these things with Miss A, but never with Mr Man. For some reason, his being celiac has hit me harder than him being allergic to nuts. He's having a tough time. He's very clingy to me which can get draining, but all I do is hold him close. I don't tell him it's going to be okay, because it will only be okay when he decides that it is. I don't tell him not to worry, because my son is extremely sensitive and needs to understand everything before he decides how to handle it. I don't tell him that it's not a big deal because let's be honest, anyone who's celiac KNOWS it's a big deal.

Instead I tell him that I love him, that I will always be there to listen to him and so will his dad (and his sister - she's been supporting him since he got diagnosed). I tell him that he will learn so much as a celiac and even though it sucks sometimes, he will feel so much better and will learn to listen to his body more.

And that's my point. We all need to listen to our bodies more. I've enrolled both my kids in yoga. I feel that it will get them more in tune with their bodies and as celiacs, I feel that this will be important to them not only now, but down the road.

Some days.. some days you just need to take a leap of faith, know that not everything is always going to be perfect, and dive right in.

Saturday, April 14, 2012

And another..

Well it's official. Chef Husband is now the only non celiac in our house (and he's been tested!).

Miss A was diagnosed at just over 2 years of age.

Mr Man - age 6. He had been tested at age 3 and it came back negative, but in the last few months, he's been complaining of stomach ailings, usually at night. He's been very gassy, especially again in the evenings (I think from build up?). He's a terrible sleeper and is always exhausted. I'm sure that he's feeling foggy.

So off we went to the pediatrician who very willingly handed me the req. We went to get the blood test (no tears, just an ouch, and then they gave him 5 stickers. Amazing clinic), and awaited the results. Given it was easter weekend, I called them on Wednesday to find out that it was likely positive but they had to wait for doctor authorization to release the results. I called back Thursday and spoke with a different nurse - the same one that I had dealt with for 2 years while going through our health issues with Miss A, and she said that the other nurse was newer and didn't realize that I knew all about this stuff already. So she gave me the results.

Normal levels of gluten antibody at 7-10. Mr Man's level? 1200. It's the highest level the clinic has seen.

We should hopefully hear next week about getting a scope and then going gluten free. My first instinct is to go gluten free immediately, but I know that he needs to stay on it to have anything show on the scope. Though really, with a level that high, I think it'll show up regardless, but hey.

I was pretty upset about it on Thursday. Mr Man was devestated. He gets it, and he knows that his being celiac restricts his diet more than being allergic to nuts does. We're working through it though and I know that it will be okay.

Chef Husband has decided that given he's the only one who can now eat gluten in our house, that we might as well go about 95% gluten free in house (he'll have a little cupboard for his treats). I should clarify that we do eat 100% gluten free, but we still had gluten in the house.

I'm sure I'll have some stories and some new learning experiences from this new diagnosis! Nothing ever seems to be simple in our house, but then, I wouldn't know what I know if it was simple. A blessing in disguise!

Wednesday, April 4, 2012

Judgement

I don't do very well with judgement. I'm not talking about the kind of judgement that you do in your head because really, no one can say they've never judged another person. (Other than maybe Jesus, but even then sometimes I think that He too could judge internally because not even Jesus was perfect).

As a mom of 2 amazing children who have food issues, I get judged a lot.

I get judged as to why I chose to breastfeed my daughter until she was 3. Some people think it's ok that I did because she was sick and needed the nutrients. Some people still look at me sideways. Who knows, even if she hadn't been sick I might have gone through to age 3 - I can't know what I would have done because I only know what I did do - and what I did was right for my daughter and for me. But still, people judge.

I get judged as to why I pack snacks for my kids when they go on playdates. Some people think I'm over protective and that I don't trust them to provide my child with healthy snacks. Perhaps I am an over paranoid mother, but ultimately, I'm the one that has to deal with the reactions (both anaphylactic and other) and has to deal with my children's questions on a daily basis about food allergies. I'd rather provide them with safe snacks than wonder if they're going to be ok. There are many houses that I do trust my children to go to because those parents have proven to me that they understand. They call me to check ingredients. They buy foods labelled peanut free to have on hand when my son goes over. They keep gluten free cookies in the cupboard for those "just in case" moments where my daughter gets hungry. They keep the safety of my children at the forefront of their minds.

Today I got judged for my vaccination schedule. I took my son to his speech therapy appointment (Mr Man had a severe stutter when he was younger. It's almost all gone, but we've hit a snag recently and needed a refresher course on how to treat it). While I was there, I decided to make an appointment for Miss A for her MMR vaccine (Measles, Mumps, Rubella). I'm not going to get into the whole MMR vaccine debate, but I will say that we decided we were going to give the MMR vaccine to Miss A after the age of 3. It was a personal decision that we were comfortable with.

When Miss A had her first set of vaccinations (in Canada, children get 3 different needles at 2, 4 and 6 months of age, then chicken pox and MMR at 1) at 5 months (again delayed), she reacted horribly. She had a fever for a week, she was grumpy for 2 weeks and I knew that something went amiss. So, we decided we were going to go one step further. We gave her one shot at a time so we could isolate which one she reacted to, and did them a minimum of a month apart (usually closer to 2 months).

It turned out she reacted to the meningicocal vaccine and pretty extremely. She developed a high fever and her personality went from content to awful. We spoke to our pediatrician about it, it was recorded in the reaction lists, and it was advised that she not get any more meningicocal vaccines. When we talked to the health nurses about this, they grilled me as to my motives, and one went so far as to telling me I was endangering my child's health (I called the head nurse after that encounter and said some not so nice words to describe my horrible experience).

Fast forward to Miss A getting sick. Our doctor requested we put vaccinations on hold. She was at home with me at the time every day, and given her previous reactions, her doc didn't want anything else to interfere with getting to the bottom of her illness. We happily obliged and haven't gotten her any vaccinations since.

It's now time for her to get a bit caught up. While I was at the Health Unit I asked to make an appointment for Miss A for her MMR vaccine that she should have had at age 1. (She's now 4 1/2). I was asked some questions that made sense "The booster" "No, the initial one" "But she's due to have her booster of x, y, z" "I understand that but she never got her first vaccination" "Oh! Okay". Polite conversation right? Right.

Then another nurse interrupts and says "Do you want to do a print out so I can see what she needs?"

What did the receptionist respond "She's one of those moms that does vaccines in the order she feels like so I'll just leave it with the nurse on call that day."

SAY WHAT?

What is one of those moms?

What does doing vaccinations in the order she feels like mean?

I bit my tongue only because there was a line up of new moms, our speech therapist was waiting for us, and I honestly was so mad I was afraid of what I would say.

But here's what I want to say:
"Madam, you have no idea why I've done things the way I've done. My daughter does not fit into the typical standard child. I have had to fight every day of this girl's life to get people to take me seriously and she is finally healthy and thriving. How dare you insinuate that I'm doing things for shits and giggles."

I told the speech therapist who advised that I report it because it was horrible. But really, what good will it do? The lady at the front desk is still going to have the same judgements. She's still going to think that people who do things in different orders to the norms are doing it just 'cuz. She's been there for over 10 years. Will me saying something really make a difference?

My point is, be careful why you judge. You don't know what people have gone through, what is in their head, or what goes on in their family. Moms don't usually make decisions out of anger or to cause harm. They make decisions that they think are doing what's best for their family in order to keep their children safe. Just because we don't do things the same, doesn't mean I'm doing them wrong.