5 years gluten free!

Posted on 31/03/2016 by lindaFB

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!

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

Holland & Barrett

Posted on 27/02/2016 by lindaFB

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

Posted on 26/02/2016 by lindaFB

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…

Posted on 11/12/2015 by lindaFB

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!

Thank you Celiac….

Posted on 22/10/2015 by lindaFB

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…..

Posted on 30/08/2015 by lindaFB

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.

😦

Luckiest girl in the world.

Posted on 07/05/2015 by lindaFB

Sitting in school right now, and I feel so incredibly lucky and fortunate. Its good to have that feeling back. We just moved in to our new house and its totally awesome. Celiac kid just started her one on one tutoring in school this week. This means she will outschool / homeschool but school will handle her maths and english and art leaving me to stress ALOT less!

They have been so so awesome and from day one (over a year ago) they have agreed to everything I asked for, changes have been made to classrooms to keep them gluten free and teachers have been there with me keeping me informed every step of the way.

I think at times I go on so much about the food policies people may think I (we) dont have a supportive school. I DO have a supportive school, they are 110% there for us as a family, the school councilor and the teachers give my son extra support when he needs it and my input in to what is safe is always asked for. FABAROONY! Always. Everyone from the admin staff to the principal have been amazing.

Celiac kids teacher is everything we could have possibly asked for and then some! I cant ever thank her enough for how incredibly included she has made A feel, even at those times that she has been different.

But we must remember all the kids who are not so lucky, the food policies that I believe should be in ALL schools in all countries are more for them then us. Not all mums have the time or energy to spend on school matters that I do. With food policies in place many issues in many places would not be issues at all.

Today I focus on the good and the good only, and in 15 minutes me and celiac kid go home to unpack some more boxes while she chit chats about her 1 hour lesson. Its like we have our life back! I am so so grateful.

And thanks Mr. K too 😉

Linda

When the going gets tough….

Posted on 22/03/2015 by lindaFB

Life is a bit like Facebook in a way. When you write happy cheerful cute kitten style things you get lots of likes (support), but when shit hits the fan and you post depressing things there is little to no reaction.

Not complaining, just an observation really. Over the last couple of months of depressing crappy crap in our life, my Facebook page has lost tons of followers. (Ok, not tons, but a few). Much the same in real life. Some people cant handle tough times. And Im not a complainer at all, not even a little. In face to face meetings with people I am always smiling, laughing, brushing it off, trying to make it sound better then it is, because who wants to hang out with a complainer really? On the blog’s facebook page I tend to not post if I cant keep it somewhat happy, but my blog, surely here I must be able to say it like it is? I will, I will continue too. Yes, I will also continue to go quiet when its all to bloody depressing to just keep repeating the same stuff, but when I DO post, Im sorry, Im not going to cover up the truth or play make believe.

I keep thinking that maybe my posts might help someone somewhere?

In the hospital the other day there was a mum, with 2 teenage boys with CF. I just wanted to hug her, because no matter what I am going through, no matter what my family is going through, my life is probably a walk in the park compared to that mum’s.

Anyway, here is a kitten. Feel free to unfollow my blog or Facebook at any time, I get it, really I do. I have a friend who only posts on facebook to complain, every bloody day. It gets annoying you know…. I am sorry that sometimes I am that person too.

-Linda

Blood tests, ambulance rides and extra oxygen.

Posted on 23/10/2014 by lindaFB

Well, I guess I knew it already as I was writing my last blog post…. we got to the clinic and they wanted to call an ambulance to send us to hospital straight away (in my opinion a slight over reaction on their part). I refused the ambulance (why scare the children more then needed?) and drove home to grab bags and iPads and food. Dropped son at neighbours and went to hospital where we were admitted.

This latest hospital stay was actually the smoothest one yet, maybe because I am getting so used to them? Or because I know exactly what we need? I actually have a bag thats always partly packed in a wardrobe, likewise we have a small bag partly packed for son. After this latest stay the bags will be improved further, but they sure do help a lot, especially if someone else has to go to my house to get stuff.

The hospital stay in itself was eventful…. Every test they could think of and then some has been done. It seems Celiac kids haemoglobin is high, her body responding to oxygen levels that are too low and trying to adjust them….. clever on her body’s part, but not good for her. The pneumonia was also a bit of a mystery, a strange kind, very severe, not the kind of pneumonia ‘normal’ people get. Well, my daughter is anything BUT normal, haha (that haha is mildly hysterical by the way). Its almost as if she enjoys playing games with science, because her test results are always a bit strange and baffling.

We were sent to a different hospital to be tested for Cystic Fibrosis. Its a sweat test. Above 60 is positive and below is negative, but a negative should really be below 30 or it needs to be investigated further. Celiac kids result was 49.

I am calm. Hubby is stressed. And I remain calm. Sortof. Celiac kid is super exited because the trip to the other hospital was by ambulance, and the super cute ambulance guy gave her both lights and sirens the whole way after she asked to hear them! Haven’t seen a smile like that in ages!

Normal people don’t GET this many pneumonias. Is it still her RSV as a baby giving us crap or is it the celiac and the crappy immune system being silly? At this point I think we need more answers, because if my counting isnt completely off we are now at something like 11 pneumonias, a handful of bhronciolitis and countless upper respiratory illnesses.

I actually think we struck gold at this latest hospital visit, because they are as concerned as I am, and I didn’t have to be assertive (read bitchy) in the slightest to get some action.

We were admitted on monday evening and they finally let us go Saturday evening after some straight talking to from hubby. They just cant feed a celiac kid in a hospital here, and if you really want someone to get better they need proper food! Thankfully her oxygen levels weren’t super low so she was only on 1-2 litres until Friday then she managed ok without.

We have been back to the hospital daily since. She is having her last antibiotics today. Next week we go to a mountain town that has a specialist hospital to be admitted for a few days, there they will check her lungs properly and hopefully before they let us go we will know more definitive answers as to why she keeps getting this sick.

We did the Cystic Fibrosis genetic test too, Im guessing they will repeat the sweat test next week also. The genetic test only checks for the more common genetic mutations but around 90% of Cystic Fibrosis should show up in this. To be honest I don’t really trust the sweat test anyway because I’m so used to my daughter having results that aren’t ‘normal’.

I wasn’t really going to write about this at all, but then I figured that its probably good to write about it, because no matter what the results are eventually, our story can probably help others. Much of the information about cystic fibrosis is pretty scary, but to be honest, if she does have it, then we already lived with it for 5 years anyway, so putting a name to it (whatever it may be) can only be a good thing so that we can help her. We are obviously hoping its something else, but lets see.

Trying to explain now why we are going to hospital without being particularly sick has been harder. Then the question ‘will they poke me?’, which breaks my heart, because obviously they will but I so don’t want to tell her this and make her cry! By poke, she means needles. She is still bruised black and blue on her arms from the IV going in last week, her veins kept bursting and it was only attempt 5 that was ok!

Anyway, thats whats going on with us. Hopefully you are all having a better month then us.

I have decided to stay as positive as I can, feed the kids the best and most nourishing food I can think of and just breathe deeply as much as I can. Me losing the plot is hardly going to help.

: Sweat Test

: The gluten free rice cakes arriving… on top of the gluten bread!

: Teddies make it all better

: The answers may be in here!

: Gnomes are everywhere in Wroclaw

: Happy face when we get to ride the ambulance

– Linda

I am home ALONE!!!

Posted on 08/09/2014 by lindaFB

HOME ALONE!!!! I mean really ALONE!!! I know mums will understand after the long summer break, but imagine then that the last time I was home alone was April!

I am not going to clean, or empty the dishwasher, or fold laundry. Im going to sit / lie / veg around and do absolutely nothing! I am home alone baby, yeah!!

So here I am (alone – just incase you didn’t catch that part!). Not stressed in the slightest, because Celiac kiddo is at school with her brother, and today I wont go in for snack time or lunch, because they’ve got it all under as much control as they possibly can.

I keep promising myself I will put my school letter up, but by now schools have already started so I guess Im yet again to late. I will be starting a new section on the blog called stuff, check there in the future for the school letter and other goodies. The fact that I am sitting here, not stressed, is all to do with the school letter and preparations. About Celiac kid being prepared and every adult in school knowing what she can / cant do.

Sure, its a bit of work, but the payback is tenfold. HOME ALONE BABY! (yeah!!)