Hi, hello!! (Ostrich no more)

Posted on 18/10/2017 by lindaFB

I really wasn’t sure what to put as a headline/subject? How do you say hello again to social media, life, your blog after spending months as a recluse?

Let me give you all a little tip (or a few actually).

If you have a hysterectomy, don’t think you can be batman or someone of equal power and strength and move country 4 weeks later. Also, if you’ve been on medication for your mental health for years, don’t quit that medication 7 days before said hysterectomy.

Dont move country, by yourself, with two kids and a dog who you cant even lift because you’ve just had surgery… dont move to a house thats cold and empty and have your furniture on a boat following a month later. Dont throw yourself in to everything without any regard for yourself and your own well being, because chances are you wont do so good…… chances are you will need months to get back on track.

And so, here I am.

I did all of the above, I learnt that I am more fragile then I admitted to myself, I realised that I’m an idiot (!! HAHA) and that just because you always land with your feet down eventually doesn’t mean you should put yourself through hell again to get there. I learnt that there is enough stress and crap in my life without me adding extra, and that there actually is a limit to how much stress somebody can handle…..

So. Thats that ok? Im not there anymore, Im forwards from there. Zebra kid has been sick properly and didn’t go to hospital, it happened and I didn’t have a nervous breakdown so I guess we are good. I realise that what P the counsellor in Poland told me about stressing about the stress that hasn’t even arrived yet is a very real thing for me. I was so scared about how I would feel when she got sick for that first time that it actually consumed me. She got sick. I stressed. We found a dr. We managed….. it was all ok in the end!

I am happy. I am happy with where I am, the kids are happy, we are settled and life is good. I realise also, that I have a lot of guilt about not enjoying it “as much as I should” and not feeling “grateful enough”. Very real emotions that Im putting on myself, nobody else, just me! I set my own bar so bloody high sometimes, all I really can do is fail.

I am not superwoman, or batman, or supermum or even close. The bar doesn’t have to be set at roast dinner with 3 vegetables for dinner, Ive moved it down to cereal for dinner and finally somehow, Im winning a bit (and we haven’t actually had cereal for dinner even twice!).

Im getting my crap together, maybe more because I lowered the bar than because I am better?

I made myself a to do list on Monday morning to make sure I actually accomplished stuff this week. It had 7 things on it, 2 of those things rather major, the sort of stuff I stress about. Well, its Wednesday and the list is complete. And there was NO need to stress. I actually took one thing off the list, because Im being kind to myself and lowering the bar, another thing sorted itself out, and the other I just got on with and did. And not only that, but we had good healthy dinners every day! See, with a lower bar its so much easier to win.

I will fill you all in on everything else one day, but Im in no rush. These things can take time, and its ok. If I dont look after me, nobody else will get looked after.

An identity crisis and another….move?!

Posted on 30/12/2016 by lindaFB

Oh gosh, I didn’t blog for ages! I think Im having a small identity crisis. While the blog is gluten free, and I want it to be informative and full of recipes for Celiacs etc, I am not feeling very in tune with all that at all at the moment, all I want to write about is zebra stuff and positive things and what we are thinking and doing. And thats not very glutenfreey, so then I don’t write at all. Strange huh? My blog my rules?

I can sense a name change coming up…

Things are good, and then they aren’t. Our life is, as always so filled with worry. But also, lets not forget, we are a family trying very hard to be a normal family. We are a normal family. Only, for us, normal takes a bit more work.

Zebra kid finally got sick, first a pukey bug and then less then 2 weeks later the cold came, the cold that I knew would go to her chest, the one that had me running to Dr D telling him to help before she even had the pneumonia. So we did the steroids, strongest dose she’s ever had, day 3 she was better and I thought we were out of the woods, only for day 4 to send us back to Dr D for an ultrasound on her lungs, blood tests at 11pm and our usual crazy crap. Day 5 I packed and by 1pm we were in hospital. I had the most amazing support from our specialists on the phone the whole time, they put us in the immunology ward where we know everybody and we – obviously – got our own room. They all remember the January 2 years ago all to well. All of this, it was ok. It sucked obviously, but Im like this well oiled machine now and we just do it. Zebra girl missed her Christmas concert, which of course means I missed my sons Christmas concert.

Then, then they let us come home. And the Christmas tree that I put up on the day 3 (after it had been lying on the floor for almost a week) was up, and no gifts had been bought and it all sucked so so bad and I just didnt care! I smiled, I laughed, I got on with things without stressing.

I crammed that big 7 year old heffalump zebra of mine in to her pushchair and we went to the mall, people stared and I smiled.

Because you know what, they are judging me, but its ok, I don’t need to care, it doesnt need to hurt me, because I know what they dont, and if they knew too they wouldnt be judging! Them judging me does. not. hurt. me.

I am letting go, of this and other things. And so often its so hard (to let go) and I want to smack them in the head, but it doesn’t matter! I don’t need to be hurt by it, I need to just think in my head how they would react if they knew, because if they did they would smile too, that we are out and we are ok, and we are choosing to live and go shopping!

All this is stuff I realised since my last post.

We sent Zebra kid to school and the deal was – if school doesn’t work we move country. We move to sun and beach and pools and warmth. Because those things make me happy, those things make my kids happy. And with all this negativity crap going on, its hard sometimes to be happy, so we need to surround ourselves with love and light and positivity.

Then. School was ok. School was ok and she was fine….?! And we were like… hang on, hold up, WTF? She’s not going to get sick? Its OCTOBER…… hell, its NOVEMBER, she’s ok? WHAT THE…..????? And then we started looking for a house nearer school and then I realised my entire being doesn’t want to bloody be here. New house or not.

I love our school, our friends, our street, our neighbours. But those things are just a fraction of life here. The dark, the rain, it depresses me. The days we stay home gathering spoons I always end up wondering why exactly we are here. Our life could be better elsewhere. Closer to hubby, closer to the SUN. Closer to happiness?

I asked myself If I was running away. I asked the school counselor if she thought I was. She said no. That I knew what I was doing and I have good reasons (see, Im sane! HA!). (

Decisions were made. Before Zebras hospital stay. We are going. Life is not about counting down the days and weeks until the next planned hospital stay, and if thats how you have to live then at least I think we deserve some beach and palm trees nearby.

So whatever. No more excuses. We need to live and breathe and enjoy life. We need to walk around the shops and not get angry at judgy people. We need to walk in to shops where you are greeted with a smile. We need to smile at the sun.

All that other stuff, it needs to get in the back seat where it belongs, because the real important stuff is about making this life the best that we can. About being happy. About being a normal family and making it easier for ourselves to be that normal family.

So bring it on 2017. This expat zebra celiac family is on the move again! And I cant wait!

Riding bikes- done! Lung – done!

Posted on 11/08/2016 by lindaFB

So we are back, a week ago actually. And guess what? Hubby did ALL the laundry while we were away so now I can do none and get away with it for probably another 2 weeks! Woohoo!

Both kids learned to ride a bike. First big brother (9), who said “its time, take my support wheels off” and later the same day went on a 3km bike ride, then the day after, zebra kid who simply couldnt stand that her big brother knew how and demanded her support wheels came off too and later that evening did it, all on her own!

This obviously is very late for a 7 and 9 year old, but for kids who were in Dubai until very recently its pretty darned good. We never rode bikes around our sandy roads in Al Waarqa….. We did however let the kids ride bikes in the majlis (formal living room), haha.

Then lungs, the stay was shorter then I expected, but they want us back in 2 months. Her eosinophil count was higher then they expected and the new meds had to be started at a higher dose then previously planned, so we have two months for the meds to do their thing, then back again for a bronchoscopy (her third). The steroid dosage she is on now will unfortunately affect her bones, so we just have to hope her bone pain doesn’t get worse again. Bone pain wise she’s been great for about 4 weeks now with hardly any complaints. I will start the daily bone broth again and continue with the vitamin D and Magnesium oil too. Fingers crossed.

Bolesławiec

Posted on 12/05/2016 by lindaFB

I have to tell you all about our little trip to Bolesławiec! Although dont ask me to spell that again, or say it, its really hard to say it.

Basically, every Polish person knows this town, and so do most tourists. Its where the famous polish pottery is made and sold.

Now, Im a white and pastels kind of girl, not really in to these patterns and stuff, so when hubby asked if I will be buying anything I said “no, probably not, but its the kind of place you have to have been to”. (Im laughing now as I write this- just wait)

So, off we went in the car, we were in a group so drove there together, the drive was around 1 hour and 15 minutes from Wroclaw, and that was not the kind off full blast driving I may have done if I was alone.

Im not going to bore you all with every minor detail, lets just say we went to A LOT of pottery shops. In the first one I bought a couple of things, in the second some more, and so on….. Yes. I bought something in every shop. And let me tell you, pastels and white NO MORE. Polish pottery all the way! We had Chris with us, my friend from the blog Kielbasa stories, we met online via another blogger almost 3 years ago, now we are like bff’s that never see each other, we talk (online) almost daily. She is a bit off a polish pottery addict and I never really got it. Now, Im totally there, she just laughed and said “I knew it!” Basically, its all her fault. She was an awesome guide though, took us to all the right places. Lets get to the pictures, because this is totally a picture post!

Obviously (I mean, obviously) I came home and realised I pretty much have to go straight back because I need more! Heres the stuff I didn’t buy and absolutely need (need. As in, I MUST HAVE IT – you will all help me explain to my husband right?) I mean the sink, I need that sink in my life!

I was sending images to relatives throughout the day, and this pottery may very well be the reason some finally come to visit, LOL!

My haul below, not bad eh? (why didn’t I buy more!!??)

I used half of it already, and Im happy to report it somehow matches my white and pastels!

After we had shopped and browsed some second hand stores we went for lunch. A place called the Blue Beetroot owned by a british-polish couple, real fish and chips, steak pie and other goodies, never mind that stuff though, they managed to feed us gluten free people pretty well, and nobody got sick. They have menus in English and all the staff spoke excellent english as well.

Great day, highly recommend it if you ever go to this area. I cant wait to go again. Thanks Chris! (<- In a good way and a bad way I think….)

Tesco Poland – Thank you!

Posted on 04/05/2016 by lindaFB

Remember some time back when I wrote about Tesco Poland and how absolutely awful it was in terms of free from? I sent that blog post to every Tesco head office address I could find, tweeted it repeatedly and emailed SO many people. Then… a few months back things started happening in Tesco. A free from shelf appeared, then two shelves, then three…. the bio section grew as well. I kept saying to hubby, I HOPE they bring their free from range over, its SUPERB… then I started seeing the Free From lactose free stuff (this from a shop that didn’t even have basic lactose free milk before). The Free from cottage cheese arrived a few weeks later, and I was like “YES!!! They are SERIOUS”. We now have a gluten free section that would put most other shops to shame, bigger then Auchan and carrefour for sure… and today…. oh wow… today, there was a free from sign on the freezer, and there was ICE CREAM! And there was jumping up and down a little and squeals of happiness and YESSS!!!!!!

Now all we need is the pies, the ready meals, the lasagnes, the cottage pies the everything!

And one of the leading sandwich meat factories went gluten free a couple of months back, and another looks like its following suit! POLAND, you are shaping up nicely for people like us! Im so happy. Really. Its only food… and yet its the normality of walking in to a shop and being able to buy something that others take for granted.

Tesco Polska, dziekuje bardzo!

Inne wiadomości na temat życie bez glutenu w Polsce, nie zapomnij śledzić nas na Facebooku.

Phone calls to everywhere

Posted on 28/04/2016 by lindaFB

Let me tell you guys something about living in Poland. It is HARD. Most of the time its not so hard, and then sometimes, its UBER hard. Like when your kid has been diagnosed with a rare disease that affects 1 in 20000 and your dr’s have no idea where to send you, like when you have to randomly google and try to find where to go and call and be hung up on by people who are scared to say they don’t speak english (Im sure they don’t mean to be rude), like when your husband is in Dubai and cant help because all the calls are long distance and many places don’t answer when they see a foreign number calling.

Like when you are texting instructions to your Polish friend and she spends literally days on the phone making phonecalls for you. DAYS. So far 4 physios do not want to see us. They are scared they will hurt her and they have never dealt with EDS. The dr we already saw is researching other more suitable drs, but his receptionist hangs up on you because I can only say hello and his name in Polish… the rest is english!

I have been looking (not so actively admittedly) for a genetic specialist since October, and the private one says the testing is not available at all in Poland, the private lab says they can do the genetic testing but its 6500zl. We have a referral to do it in public health which would be cheaper, but seems there are no genetic specialists? Or there are and they are hiding. Our dr. said forget it, you will wait years, go private. So do I go directly to the lab and get results that I wont understand? Go to the private dr that wont do the test? Or take my now probably expired skierowanie to all the NFZ places and hope they will help? There is an EDS specialist in Warsaw, one of our dr’s (dr S, THANK YOU for your absolutely amazing dedication to us) has been emailing him, but he is not replying.

Thank God for Daria. She called the NFZ Head office and got two numbers from them to call, tomorrow we will try again. I say we, because while she makes the calls I sit and fret and drink to much coffee (again) and try to keep more hairs from going grey (unsuccessfully I may add).

As a backup I also posted in the expat group and got a link from there for a genetics place, it says they mainly look for other things but surely they can do EDS too? Lets see. Fingers crossed InshAllah!

Must go drink more coffee. Number 7 I think? Its only 4pm 😀

A big thank you to my school – a step in the right direction!

Posted on 04/09/2015 by lindaFB

A big step for mankind…. well, thats how it feels. So far in Poland I haven’t come across a school with a food policy (the number one question one of those parents ask when looking at schools). Last year I nagged, other parents nagged, many others also nagged, against. As they do you know.

But this September big things happened. There is a food policy. A food policy, an allergy action plan, staff that have all been trained in first aid and trained on allergies and contamination. Eating in class rooms will stop over time, and the school will be nut free. No more birthday cakes at school (YES!!!!!!) There are now standard procedures for kids with “issues” and I no longer have to make my own information leaflets or train staff.

This, this is good for schools. Its amazing. It can only help to make the school better. I am a firm believer in food policies. I am a gigantic supporter of food policies. I was, even before celiac kid was diagnosed. Why? Because I am a human, because I know that even if my kid doesn’t have a food issue, someone else’s kid might. An anaphylactic shock is not something I want any child to experience, or watch.

As one of those mums I might get some dirty looks over the food policy, but I will hold my head up high, and take some credit, not blame. Because a food policy is the right way to go. It teaches our kids about others who may be different, it makes them aware, a world that is aware and considerate. That is a world I want to live in.

Thank you school!

Gluten Free in Poland

Posted on 26/08/2015 by lindaFB

Im on so many gluten free forums and Im constantly replying to the same questions about gluten free in Poland, so time to make a post me thinks!

Being gluten free in Poland is getting easier and easier. While some smaller towns mainly sell gluten free in specialist “health food” stores, larger chains usually have some items available. Some shops will have just a few items, scattered around the shop, others will have huge sections or even entire aisles dedicated to gluten free.

The main Polish brands are all clearly labelled with images for egg free, gluten free, wheat free, lactose free and so on. Its really very easy, even if you don’t speak Polish to find what you need.

The main chains that stock gluten free are:

Auchan, most stores have a large gluten free section.
REAL
Carefour, some of the larger stores have an entire aisle dedicated to gluten free.
Piotr i Pawel
Alma
Intermarché
I will mention Tesco here, because they recently introduced gf bread to their stores, this is all they will have though, so if you want other things and have other supermarkets available, give it a miss. Edit April 2016. Tesco has recently done a magic turnaround and is now one of the best for GF near me. Go Tesco!

For eating out, the words bezgluten and bezglutenowy will be your best friend. Both mean glutenfree. Pronounced how they are read. A visit to celiakia.pl (Polands celiac society) is well worth your while. The english section is tiny, but if you stay on the Polish section you will find lists of restaurants checked and approved by the celiac society. Menubezglutenu is another site which lists places with a glutenfre menu, you can search using a map, in polish and english. Many upmarket restaurants have their own gluten free menus. Steer clear of basic road side establishments, as they mainly serve gluten loaded traditional Polish cuisine and will probably not even know what gluten is.

Poland also has some 100% gluten free establishments.

Dom Pod Ptasznica – a gluten free guest house in the mountains. The owners are both celiac and all the food they make is gluten free and wheat free.
Friendly Food Poznan – A totally glutenfree cafe / restaurant with amazing food. Review here.

Some of the common (gluten free) Polish brands are:

Balviten
Natura (meats)
Bezgluten

Some other things to look out for:

Grycan ice cream, all but 2-3 flavours are gluten free and labelled accordingly
Goplana chocolate, Poland’s oldest chocolate brand, all labelled bezglutenowy on the back and super yummy (I have yet to find a flavour with gluten)
Costa coffee (also sometimes called coffee heaven) have individually packed cakes that are gluten free
Trendy Vegan / vegetarian cafes seem to be all over Poland, they will usually also have a ton of gluten free stuff on their menu. Check them out!
Rossman – while a sort of chemist, often stock gluten free items.

If you are an expat, several pre schools now offer bezgluten food and have been trained and approved by the celiac association. YAY! 🙂

Be careful with:

Polish hams, sausages and bacon – almost all contain gluten
The famous polish kielbasa! ONLY buy the ones labelled gluten free.
Cross contamination, while many places may be able to give you something gluten free, the knowledge regarding cross contamination can be a bit hit and miss
Bakeries offering gluten free, these items may very well be baked on site which would make them low gluten, not gluten free, always ask and dont buy anything that isn’t individually wrapped if you are shopping in a bakery that also handles gluten items.
Airports! If you are going to be stuck in one for a while, bring food. Not even Warsaw airport has anything on offer.
Hospitals. No, really. Polish hospitals are terrible at feeding celiacs. If you end up in one (God forbid) you need to bring your own food. There are some exceptions to this, the lung clinics in the mountains see CF patients from all over the world and they are usually ok to feed those with allergies and celiac also.

Enjoy Poland and have fun 🙂

For more tips on Poland and gluten free life in general, join me on facebook!

Wiosna visit.

Posted on 27/04/2015 by lindaFB

My last visit to Wiosna they had 53 children.

53.

And thats one orphanage in this area, there are many more. 21 babies, 7 below 4 months old. Now, those of you who have kids know that buying nappies (diapers for the American readers) is expensive, and no matter how much you stock up, they run out super fast. Imagine then buying nappies for 21 babies. I mean, you could fill 2 cars and it will still run out in a heartbeat!

Then the formula. The amount needed is unimaginable to me. While my school is collecting monthly now for them, it is just not enough. I have gotten another school involved also, and they do bi monthly collections, and there is a Polish lady collecting in her daughters class in yet another school. But what we bring them, its still not enough. Its like feeding a hungry dragon, now matter how much you give, the dragon is still hungry. Or like Elsbieta (who works there) says, its like a big black hole you can never fill. But try we must.

I wanted to set up crowd funding for them, but I was hoping to raise large amounts and didn’t want to do it in my name, I wanted the funds to go directly to them, but sites such as Just Giving do not let you sign up as a charity from Poland. Elsbieta is looking in to alternatives, but at the moment, it seems more or less impossible. Every site I checked so far does not let Polish charities register. So I decided to go for something smaller, just while we wait, to fill that big black hole a bit, but sites such as ‘go fund me’ are also not an option, as again, I can not raise money from Poland, only give! I am left with 3 other sites that I am looking in to at the moment. I desperately want to give my friends the option to help, even if its just a little.

I will update you all on this later on, now I will just leave you with some photos. And yes, I have removed the children’s faces. While they are all absolutely gorgeous, it is not right to reveal their identities. (But don’t I look good with a baby!!?? I might need to adopt a few!) -Linda

http://dzieci-wiosna.pl/index2.php

Krakow for the day

Posted on 13/03/2015 by lindaFB

So yesterday we went to Krakow. Met a wonderful professor who spoke exellent english, she took her time to explain things thoroughly and answer my many questions in regards to previous results. We are now looking at antibodies to different pneumonias and other illnesses, she suggested that although the IGG subclasses and overall IGG was ok (a tad low but ok) that maybe perhaps the issues is that the immune system , although it has what it needs, doesn’t function normally when there is an infection, she will follow up with us once we have been to Rabka. She even gave me her personal mobile number. Such a relief.

We came home, and I was so tired I ate and went to bed with the kids at 8pm! Probably a good thing as I wont be getting a bed in Rabka! Ha.

I need to say that I have been so surprised by the lack of negative attention we get from A wearing a mask, I expected stares etc, but we have had none of it! Some looks, yes sure, but accompanied by smiles, nothing else. Infact, yesterday in the Krakow hospital a man came running after me to ask where I got the mask! She was wearing her pink minnie mouse mask at the time. I am so glad we got them, it was the right choice for sure. And the immunologist agrees she should absolutely wear one in crowded places until we have a firm diagnosis.

I wish I had been able to help the man with finding them, he spoke no english and me explaining etsy in Polish may not have been very successful! Good luck to him, poor family feeling that they need one. Makes me want to give him a hug.

-Linda

	Leagh Wilkinson on Swedish Coconut Balls!
	lindaFB on Your evil can not touch me, Im…
	Marina on Your evil can not touch me, Im…
	lindaFB on Bone Broth vs Stock
	lindaFB on Bone Broth vs Stock

GlutenFree & Me…. (and everything in between!)

Expat family, living with Celiac. Our little girl also has Ehler Danlos Syndrome, Osteopenia and hypereosinophilic syndrome. Ongoing investigation for Lupus & RA. Involuntary homeschooler and spoon collectors.

Category Archives: Expat Life