Ostrich.

My head is stuck firmly in the sand. Deep deep in the sand. Everything is so freaking GREAT and I dont WANT to go to the dr, I dont want to start the next step.

We need a pulmonologist to help guide us to lower the dosage of steroids and check her nitric oxide levels.

We need a gastro to help guide us and investigate why she stopped growing again – is it only due to steroids or does she need extra feeding / growth hormones wtf??!!

We need an allergist because holy shit her allergic reactions are getting worse and shes due new testing.

We need a physio who can work with her on her back and help her build muscle safely.

We need an orthopedic doctor to take a look at her spine to see if she needs braces or if physio is enough.

We need a rheumatologist to check her over as she was due a repeat “look over” a few months back.

I AM FUCKING TIRED AND I CANT THINK ABOUT IT ALL RIGHT NOW!

Everything is so great, so WHY??!!!!!!

Head back in sand. Look at the pretty flowers…..

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Welcome to all the newbies (prologue)

So many new “likees” and hits from all over the world. I realise while looking at my blog its an absolute mess. Its trying to be an informative celiac blog, a place for gluten free recipes, something that spreads celiac awareness, and then *laugh snort* life fecking happened! And this little celiac awareness blog website thing went and got totally and utterly side tracked by a ton of other things thats arent very celiac related at all, so now its much more (a mess basically), and I cant really change it because its our life and this is how it happened (guess you just had to be there to understand lol).

So if you can put up with a bit of a mess there is actually some good celiac info hidden in here, info on lunches and letters for school and basics for your kitchen. If you are lost you can use the search box which is in some corner… somewhere… hehe. There is also plenty of Zebra stuff (Zebras will get this!) and spoonie stuff. Anyway, welcome, and thanks for reading 🙂

Linda

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Ambulance tears

I haven’t written since January! Wow. Things have been crazy to say the least… but before I tell you all about all of those things, I want to tell you all something else.

Being one of those mums…… not easy stuff.

I sometimes cry when I see an ambulance with the lights on. I wonder who is in it. I wonder if their heart rate is ok. I wonder if their oxygen is ok and if they are conscious. I wonder if maybe they haven’t even been picked up yet and they are still at home, the ambulance caller frantic with worry wondering how much longer. I wonder if someone is holding their hand and telling them it will be ok. I wonder if the mum or dad or spouse had anyone look at them and say “it will be ok, don’t worry”. I wonder if anyone gave the mum a hug? I wonder if she is ok? And then I realise that Im crying, and I realise that that fear that I felt all those times, that fear that sort of feels like an iron claw around your heart… that fear….. it never really goes away again. Its right there, just below the surface and then there you are, crying at a traffic light because you saw an ambulance……

Its ok to be that mum. Its ok. Its also ok to not be superwoman all the time. There are so many campaigns out there highlighting what depression looks like, teaching us how we can support people in their darkest hour etc. Well, being one of those mums….. its not so dissimilar.

Stress, high stress for extended periods wrecks havoc with your body. For me, I gained weight, lost hair, got grey hairs, I pick at my skin, I eat obsessively or don’t eat at all, I stress over small stuff like whether I left the cooker on, to the point where I can hardly breathe and I might cry. I have days where I cant even function. I have so much that needs to be done and I cant get it together, I cant even manage to put a load of laundry on!

Then, when shit hits the fan Im calm. Im cool as a cucumber, getting everything done and organised, taking care of everybody, joking with the Dr’s, comforting, holding…..

…………….but who takes care of me…..? 

Then after, months after, there I am….. at the traffic lights, crying my eyes out at an ambulance!

Being one of those mums. It is not easy. And when you ask me if Im ok? I’ll put my big brave knickers on and smile my biggest smile and say “Im fine, why wouldn’t I be” because thats just all part of the parcel, and if I told you how I really am… some days…. I might just never stop crying.

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