Me and Social media

So, people have been telling me for years to get instagram. And I have been telling them for years… no. Twitter, Facebook and blog is enough, remember I do my twitter and GF UAE twitter, my facebook and GF UAE facebook and both the blogs too!

Well. I was wrong, and Im admitting it. I got Instagram and I LOVE it! LOVE LOVE LOVE it! Its like twitter only its just images and nobody gets pissed off that you are posting to many images because, DOH, its Instagram!

So yeah I was wrong. (See hubby? I do admit it sometimes!)

So if you like food, puppies and other cute things, do come join me, see you there!

My Instagram!

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5 years gluten free!

We have been gluten free for 5 years this week. 5 whole years! I remember it like it was yesterday. We were called in to the clinic, it was a Saturday morning, they had some results they said. Aili had been in and out of hospital, I was drained, mentally and physically. My life revolved around my screaming baby and lots of vomit.

We went in, the clinic was busy, lots of screaming kids, everyone was rushed. All the staff knew me by then, by voice, by name, by daughters name. We were ushered in to see the dr between two others who had appointments, it was rushed, no examination, papers handed over. I had been hoping it was lactose, but it wasn’t, it was gluten and my whole world was spinning.

We walked out, papers in hand. Gluten cant be in to many things right..? My son was hungry, my baby girl was hungry, we were in a mall and the mall was spinning. I let out a small sob. My drained self couldn’t cope. That small sob was it. My husband rolled his eyes and told me not to cry again, our life was a mess.

I never cried about gluten again. I cried many times since obviously, but not about gluten in particular.

We went to mc Donald’s. Son had a burger, Aili had some fries. No gluten in fries right…? We went home. We went home and nothing was the same again…..

It was good different though, not bad different, because the vomiting….? It stopped that day. Our girls life was saved that day. It continued to be saved every day since.

I look back at that day now, and I feel sorry for the exhausted mum that I was, and I wish I could have given that mum a hug and told her it will all be ok, that its only hard at first, and that life will get better now. I wish I could hold that mum and tell her to cry it all out, get it over and done with – the crying. I wish I could go back and smile at that mum and encourage her, because back then, going gluten free seemed like such a huge huge task, keeping my baby girl safe seemed so impossible.

I was so tired from months of illness and hospital and clinic visits that any task – no matter how small- would have seemed impossible that day.

We did it, of course. I did back then what I still to this day do with all the new stuff. I learned everything I needed to learn, I got on with it, I looked forwards and upwards and onwards and I remained as positive as I possibly could, and I have, almost every day since. Even in my darkest deepest moments of despair, I am still a very glass half full kind of girl.

Gluten now, 5 years later seems like such a minor thing compared to all the things we are facing today. Sure, its hard still, but its second nature, I have done it for so long it no longer bothers me. 

If you are that mum that I was that day, today, tomorrow, yesterday… please know this. It gets easier. Really. It really really does.

Happy 5 years to us!

5-years

Dont forget to join me and my family on Facebook! 🙂

 

Holland & Barrett

Oh my gosh! WHY Did I not know about this before? A few days ago I stumbled upon Holland & Barrett while searching for gluten free, eggfree cornfree flours. Randomly clicked around and a few minutes later realised they do International delivery! And guess what, it works out cheaper (delivery wise) then amazon to Poland!

Shopping Corn free, gluten free , wheat free and egg free means there is very very little available to us, but after clicking our allergens on the left and reading ingredients I found flour (!!), bread mixes (!!) biscuits and mayo. Anyone else who is corn free on top of gluten free will know my joy. Soups, so mummy can make lunch occasionally without cooking! Gravy, because making it from scratch every time gets so old, sweets, because kinder egg chocolate – however nice it is – gets boring after a while, ice lollies, because, ICE LOLLIES! Fancy teas for mum, because hey, Im worth it!

Then the joy when half the order came just 3 days later!

My joy though is nothing compared to the joy of little madam who got to eat mayo!

And in 2 days there will be more joy when the rest arrives!!

(This is like the kind of jumping up and down screaming joy that only teenage girls feel. Its A W E S O M E!)

Thank you Holland & Barrett, you made my day!

 

http://www.hollandandbarrett.com

A weight of my shoulders

The other day when I blogged about our diseases, I did it because I felt the need to update you all, but little did I realise how much relied I would feel after. I carried some of this info around for months and didnt share it with anyone. Getting it out there, saying the words, saying the names, oh wow. I feel like a different person.

A problem shared is a problem solved, well not solved perhaps, but in terms of mental well being, almost there!

I have been able to do research and take it in, I am not in denial. I am free and I am a better parent for it. The fight is back in me! YEAH!

We are feeling positive…

Its been a while. The last two months have been INSANE. The 2 hospital stays in 3 weeks took its toll, on me mainly I guess. There was the tightness in the shoulders, the daily headaches, the waking up at 2 am and 3 am and 5 am to google medical terms (!!), the comfort eating, the not being able to face the laundry pile or managing to do anything other then feed us and keep us somewhat clean. We have worn pyjamas, ALOT!

Stress is a killer. But in a weird way, its all ok, Ive “hit the wall’ before. Ive crashed mentally on some level after most our major hospital stays. Sometimes I just need 4 days of calm and its all ok again, other times its taken 2-3 weeks. One of the biggest ones was 3-4 years ago when after 3 months I still couldn’t “get it together” and had to seek medical help. I write this, not for attention or for you to feel sorry for me, but because I know there are other mums like me out there, and its ok! Feeling the stress, not sleeping, not being able to hang the laundry or clean the house, its all normal. We do what we have to do, we get our rest and sooner or later we will recover, and sometimes you need the help of some clever doctors to get you back on your feet too. And thats all ok! 

Im back on my feet. A few days only perhaps, but Im there. I watched 2 whole episodes of a tv show and understood what I  was watching (!!)  I did 2 loads of laundry in a day and hung them. The house is decorated for Christmas, there is dinner for today and tomorrow already made, the freezer is stocked with bone broths and bolognese for “bad days”.

Im not super mum, but I’m doing my best. Im doing ok. We are supported. We are ok.

In January I need to pick up all the strings left hanging, arrange appointments and follow ups. Im in no rush. Nothing will change because we wait another month. Its Christmas time, and we will concentrate on eating and breathing and being alive. (Not that I really need much more of the eating, LOL!)

While I haven’t posted much on the blog lately, I do update the Facebook page pretty much daily 🙂 Come join us!

 

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Thank you Celiac…. 

Lying in a hospital room with 4 kids and 4 mums crammed in to their childrens beds. Ive been told today that my daughter has a lung disease thats so rare our doctor – who is a lung specialist – has only seen it once before. The name is so long and complicated I dont think I will ever learn it. So tomorrow we have a CT scan to see how much damage this crap caused, and another bronchoscopy (because having had two at the age of six is totally cool) where they will also do a small biopsy.

On top of that she has a lump in her left armpit, blood test results that point towards lupus and major signs of autoimmune activity in the blood.

So the lupus isnt for sure I asked? And no, it isn’t, because lung departments dont diagnose it, but everything points to it. Great. Awesome.

We leave the day after tomorrow, have a week at home, then check in to heamatology and reumatology ward in another hospital in another town (because whoever visits the mosts hospitals before they die wins….right? Not many to go in Poland!)

So yeah. We are cool. All good.

Thank you Celiac. Really. ALOT.

Back to school and corn can do one…..

So upset today. Really really moody and horrid.

Back to school is getting me down, big time. Why? Because only one is going back, and he has to be proper gf for the first time ever, and I need to bake again, and baking corn (and egg free and gluten free) free is a bloomin nightmare, and I dont like baking and Im picking faults right now, with everything.

Why cant I just go to the shop and buy the bread we need? Why cant they just bloody make it??? Im feeling miserable and sorry for myself and I want to scream and stomp my feet and throw things.

I hardly ever have days like this, everything thats been thrown our way these last few years I have taken in my stride and just gotten on with…. but today, I am hard done by, I am miserable and I want our school to have uniforms and I want shops to stock stuff we need and I want to be in Dubai not here and I want someone, anyone to come do my laundry because Im so friggin tired I think I could sleep for a month. Maybe two months.

And Im home sick, and I dont know where home is, or what Im missing and Im so upset and sad.

I want both my kids to go to school tomorrow and I want to be alone sometimes, even just an hour or two. And September is coming, and every September for forever she gets pneumonia, then again in October and November and bla bla bla and I cant do it anymore. Can I please just sleep instead…?

Im not depressed, honest. Tomorrow, or later or whenever I will be just fine. But sometimes I just bottle it all up, for so long and then I need to just let it out, a bit atleast. Then I feel so bad, because there are people out there with real issues, people who have terminal illnesses and others who are fleeing wars and orphans and all sorts, and I feel like such a selfish brat for complaining, I have no right to complain. Its not so bad being me really…. is it?

Deep breaths and all that. Tomorrow will be a better day.

If anyone knows of GF, CF, EF breadmixes, please let me know.

😦