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

Sometimes I just want to scream- an update on our diseases.

I am trying to process all this new information, come to terms with it, understand it…. but its hard to come to terms with things that are maybes, things that aren’t for sure.

With the Celiac process I also felt sorrow, and guilt (because mummy didn’t know) and then I read and read and read and learned whatever I could, made a support group because there wasn’t one, met others and I processed. I not only processed but I excelled in my knowledge, helped others (and still do) and it was all ok. Celiac was ok, our disease was not a lonely thing. We were “severe” symptom wise and issues wise, not those happy go merry celiacs that go out and function somewhat normally. We had issues, many of them. Now ofcourse I know most of those issues were probably not celiac at all but all the other crap that we now know about.

Trying to process a disease that I have to google every time I need to write it because I cant learn to spell it (hypereosinophilic syndrome) , trying to process a disease that she probably has but they dont want to say for sure yet because there is no damage, (lupus and rheumatoid arthritis), trying to process and understand a disease that is super rare and the only specialist that deals with it in the country we live has closed down his email and no doctors know how to get us the help we need (Ehler Danlos Syndrome). What else…? Haha, I mean, we for real have to think twice to make sure we include everything when we are told to give a medical history. The allergies and the celiac take a backseat will you, you are so minor I mostly forget! I even find that offensive myself as a celiac advocate, but it is how it is right now.

Then there is her immune system, a system that we know its faulty, but they cant figure out what part. She gets sick and her system doesn’t respond, she doesn’t fight. Her levels are ok on paper, but in reality…. not so much. They are testing and re testing, the road has already been so long, and yet there is an awfully long way to go before we actually get to someone saying a. yes, this is whats wrong with her immune system, or b. There is nothing wrong with her immune system and whats happening is a symptom of her other disease(s) that are not yet fully diagnosed. 

Meanwhile we are at home a lot. We rest. We eat. We try to live a normal life. What is normal anyway? This is normal to us, pretty much has been for years, naming the crap really doesn’t make much difference in how we live, although I must say I do feel better.

When baby girl says she has a bad day now and she’s tired, I let her stay in bed all day. A year ago I would have felt guilt, guilt that she isn’t playing outside, guilt that we never DO anything, guilt that she didn’t get enough fresh air etc etc etc. All that guilt by the way, it wasn’t my guilt, it was the guilt that society puts on you when you have a child that doesn’t look sick. If they don’t look sick they cant be, and so they must conform to a life where you do stuff every day, go out every day, dont use a puschair when you are 6 etc etc etc. Now the only guilt I have is that I pushed her when obviously on those bad days she needed to rest.

Oh, and I have guilt about her hair! Gosh, this hair that we grew and grew, and she would cry when we brushed and I thought she was just being a kid. She asked to cut it, and I didn’t say no, but I talked her in to keeping on with growing it long, every time. Now after reading and reading I realise that most EDS patients have “hair pain”, many cant stand to have their hair brushed as there is so much pain involved. Who the hell am I to try to talk her in to having it long?? I listen now. I have learned to listen with ears that aren’t tainted by our societies pre set expectations of what life should be like. I listen like a true listening expert and whats more, I hear her.

I will keep processing, I will keep on hanging in there. Check in on us on facebook (which is far easier to update then here).

Love and spoons

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Swine flu is in my town

I think swineflu is my stalker. Little madam was born prematurely during the 2009 swine flu outbreak. We kept her isolated from people and crowded places for months. I frantically learned everything I could about the darn virus, as you do when you have OCD and you are a helicopter mum. (<- I am. The gluten and allergies just gave me an excuse. Truth. Sorry, lol)

Now here we are, with a kid with a wonky immune system who has a lung disease, someone who is not allowed to be vaccinated because we don’t think she fights viruses the way she should. We are those people that aren’t allowed to get it. People say its “just a flu”, but fact remains, swineflu kills more people then “normal” flu does. It killed people in my town. Yesterday. Its here.

So. Great. Because I dont want to murder people who cough on my kid on normal days….. (being sarcastic). Now I also have to suspect them of having swine flu! Im wondering how long we can stay home. Im wondering if I should take my older child out of school, Im wondering if we can get tesco delivery for the next two months and if the tesco delivery guy is coughing on my stuff when Im not looking? Im wondering if Poland can handle a large outbreak and Im wondering if Im overreacting and Im oh so tired of always. bloody. worrying.

We are supposed to go in to hospital in 10 days. The very hospital that will look after the kids swine flu cases if there are any. They agreed to put us in isolation. Is that enough?

Breathe breathe breathe. Thats todays task. Breathing and ordering food.

Stay safe in flippin virus world!

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Orphanages in Poland

wiosna

Yesterday I did something that was absolutely heartbreaking but encouraging at the same time.

I visited an orphanage about an hours drive outside of Wroclaw. As a mother, my heart was breaking in to a million little pieces. How can someone just abandon their baby? And even worse, an older child! A child who on some level understands, asks questions and wants to know why? It took me the whole day to try to get back to “normal”. The women who work in the orphanage must all have super powers, many are mothers themselves, and their hearts must be breaking on a daily basis.  They all deserve a medal. On a positive note, I was really surprised at how clean it was, the abundance of toys and happy colours, I had expected the place to be like something out of those pictures you saw from Russia in the 80’s or the pictures coming out of Romania after its fall. Far far from it. The children are well looked after, 51 children, 50 staff. They are in nice clean surroundings that look like a modern nursery or pre school. There are many many kitchens and children are split in to smaller groups for meals and activities with an “auntie”.

I also felt encouraged, because I really think we can help them. By we, I mean my children’s school, the expat community and people around us.

I felt compelled to offer this home my help many months ago, some of the children were at a school event concert and I couldn’t take my eyes of them. Gorgeous beautiful lovely kids, and someone gave them up! I cant adopt them all, but I sure as hell can try to contribute to making their lives easier in any way I can.

I am not rich, I cant do this on my own, but I have a voice and Im able to ask others for help!

There are hundreds of orphanages in Poland, with an estimate of 80 000 children being in care today. Some orphanages are large, like the one I visited, others are smaller family homes. The children in these orphanages are not necessarily orphans per se, some have been given up, some have been taken from their homes by police or social services, others are in state care while parents are in prison. Some parents just cant cope and their children go to stay in an orphanage for a short while before going back home.

Many of the children suffer emotionally, not just from abuse of course, but the older children from knowing that they were given up.

In this particular orphanage children stay on average 6 months to a year. Some however stay only weeks, and one of the longest staying residents stayed 3 years. The orphanage has children from birth up to 12 years old. Once children turn 12, they must go to a youth home. Siblings are kept together as much as possible. Sometimes they get 4 kids from the same family! In other cases they will get a new baby every few years from the same family….. heart breaking, and social services just cant keep up.

Adoption is under strict regulation in Poland. Law states that children put up for adoption must go to Polish families first. If a child is unsuccessful in being adopted in the first year, then the adoption goes global with people from other countries being eligible to adopt. Catholic families have priority, and then Christians (many of the kids adopted internationally are older and already familiar with religion and Polish tradition, so I guess this makes sense for them to do it like this). Children with health problems or developmental delays often end up being adopted to foreign families, as most Polish families simply aren’t interested or cant support a child with special needs.

There are also age restrictions. If you are below 40 you can adopt a baby, but each year after 40 is the age that the child can be, so if you are 42, a child must be minimum 2, if you are 44, minimum 4 etc. You can be 47 and apply to adopt a 5 year old, and they will look at your case, but generally the rules are not broken.

In the orphanage right now, there is a 10 year old boy with his 7 year old sister. They have been there for two years and have been up for adoption this entire time. They must be wondering what is wrong with them that their real mum and dad left them and now no new mummy and daddy want them either. There is also a very small baby with a cleft palate, (given up because of this??) and a newborn baby girl. HEART. BREAKING. 51 children. Fiftyone.

Generally the children WANT to be adopted, a child who is “not ready” to be adopted would never be adopted against his or her will. The match is made in Warsaw in the central adoption place, then the child and new parent meet a few times before everything goes through. Single women can adopt in Poland, but not men.

The orphanage gets a government grant every month, this money must pay wages (fees for speech therapists and special therapies, psychologists etc) as well as bills, water , electricity and so on. They also must buy anything they need with this money. Food, clothes, school equipment and so on. I asked if it was enough, if they ever worried about being able to meet the children’s needs, and the answer was yes. All the time.

Anyway, less of the heart breaking stuff and more of how we can help these kids!

Many church groups and organisations get in touch with orphanages and help them. They receive many many toys and books, sometimes people just show up and drop stuff, other times its sent in the mail. Clothes are needed at times, but at the moment they have what they need. Christmas was recent and apparently people are very generous at that time of year. I also dropped off a ton of clothes and shoes at my visit, thanks to those who helped me collect those.

There are many things that are always needed and rarely get given. I will give you a list in a minute.

I am getting the PTA in my school involved, and Im hoping we will be able to deliver them a monthly food delivery. Non perishables obviously. This should take some pressure off. If you are in Wroclaw and want to help, get in touch using the message function on my facebook page.

Things they need on an ongoing basis are:

  • Underwear (new)
  • Socks (new)
  • Bedding / blankets / towels
  • Nappies
  • Baby wipes
  • Baby toiletries, such as cream for sore bottoms, talcum powder etc
  • Pacifiers (dummies)
  • Washing powder
  • Cleaning products
  • shampoos and soaps for children
  • tooth brushes and toothpaste

then they are slightly short of and would need the following:

  • Dictionaries english / Polish
  • Books for learning in Polish, text books, not blank ones
  • paper for drawing A4
  • Colouring books

They do not currently need any paints, crayons etc, as they are overflowing, they also have more toys then they can store.

For foods they would like:

  • Pastas
  • Rice
  • Beans / lentils / pulses
  • Tinned foods
  • Baby food in jars
  • Baby formula
  • Long life milk
  • Other things that don’t expire to fast can also be added.

If you can help, let me know, I will be going at least once a month, possibly more.

If you want to help the orphanage directly you can, they have a website.

there is also a Facebook page

Do let me know if you can help! Thank You!!

-Linda

(And yes, I asked if they had any Celiac kids, if the answer had been yes I wouldnt have left without them!)

Edit to add: If you are interested in adoption in Poland there will be many steps to go through, adoption is free but there will be some fees involved in the paperwork process. A family is checked thoroughly before being matched with a child. Orphanages have no say in which family adopts a child as they do not deal with the actual adoption process.

1. Wojewódzki Ośrodek Adopcyjny w Warszawie ul. Nowy Zjazd 1 02-018 Warszawa tel. 22 621 10 70 22 622 03 71 22 622 03 72 e-mail: woa.warszawa@mcps.com.pl

2. Krajowy Ośrodek Adopcyjny TPD Krakowskie Przedmieście 6 00 – 325 Warszawa tel. (0-22) 425 46 77, 425 46 88 faks: (0-22) 827 78 13 e-mail: adopcja@tpdzg.org.pl

3. Katolicki Ośrodek Adopcyjny ul. Grochowska 194/196 04-357 Warszawa tel.: (22) 618 92 45 e-mail: katolickiosrodek@interia.pl

Catching cold in Poland (totally = death)

96-flower_slippersYes, its true. Ask any Babcia! If you forget to wear slippers in winter or socks in summer on the floors, then you will surely catch pneumonia pretty much instantly. If your child does not wear his or her jumper you are a very very bad parent. Its true. Really.

It doesn’t matter how many times you tell a babcia (a grandma / older lady) that pneumonia or a sniffle is caused by viruses or bacteria, they know better you see, and the answer to all evils is to wear slippers at all times.

I think these babcias would have a heart attack and die on the spot if they knew that we in Sweden allow babies to sleep outdoors all year round. We also sleep with windows open and often leave windows open in such a way as to create a draft. Yup, even in winter. Air you see is good for you. In Sweden at least. In Poland a draft can result in imminent death almost as fast as not wearing slippers. (Read about the killer draft here on my friends blog)

Its not only babcias, also well meaning aunties, random strangers, and believe it or not, doctors! One would think that slippers is the answer to the entire worlds problems. Perhaps if we all wore slippers we could close down 50% of hospitals…. at least!

I have had well meaning stranger babcias stop me in the street to tell me to put more clothes on my kids. NO JOKE. The more polite ones just tut and shake their heads while giving me one of those babcia looks.

Now, lets not even start on the cold milk in the cereal in the morning…… (instant killer)

Linda

Dzien Dobry! Saying hello in Poland, and you MUST! 

say-clipart-11971028791107470649FunDraw_dot_com_Cartoon_Kid.svg.hiIn Poland you say hello. To everyone! I mean really, you do! I used to think my husband was super embarrassing when he walked in to shops in Dubai and said a bright and chirpy ‘Hello’ to the sales assistant or any worker who happened to be nearby. Now, after a little over a year in Poland I get it, and I also do the same!

Everywhere you go, bank, post office, small shop, you walk in, you say Dzien dobry. When you have paid, you say Do Widzenia. Yes, even in the bank!

The post office one is crazy, you actually walk in and say hello to the other people in the queue, not to the person working there. If you are not the talkative type you may get away with a nod. Its weird how courteous people in poland are, yet if you smile at someone they will think you are totally bonkers.

Im a smiley kinda girl, I guess its what I do, I smile at everyone (ok, maybe not everyone, but lots of people), and this seems to almost frighten polish people. I guess its a bit like the ‘no eye contact rule’ in London on the tube! But say hello you must!

So here I am, like a total lunatic. I happily say hello to the other customers when I walk in to the post office or a bank, I say hello to the security guard at the door of any building, and bye when I leave. I say hello to the joggers outside of school every morning, and the old lady who walks her dog. I say hello to the ladies at the till and the other patients in a doctors waiting room. I say hello to pretty much everyone. Not in Tesco though, its to big, to many people to say hello too! Only the security guard and the till person gets a hello in there. I also say hello to anyone before addressing them. So if I need help in a shop I would say, ‘Dzien Dobry, do you speak english’, rather then ‘Excuse me, do you speak english’? Unless its someone very young, then chances are they know english well and wont be offended at the lack of a hello!

And with that I bid you Do Widzenia! Im off to IKEA where I will say hello and goodbye to a ton of strangers 🙂

-Linda

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You win some you loose some….. (allergies!)

So we are back from the hospital in the mountains. It was amazing, gorgeous, and calm and everything you could possibly ever ask for in a hospital, the scenery in Karpacz is amazing. Oh, and they could FEED her! First hospital stay where she ate the food!!

Results? Well, not all test results are in yet, but it looks like CF is more or less ruled out. Celiac kiddos lungs are healthy with no damage! If anything she has strong lungs that have been able to cope with so many pneumonias. The doctor almost got himself a big slobbery kiss when he told me this. Then I remembered Im married (although the news was so amazing Im sure hubby would have forgiven me, heck, even done the kissing himself!).

We left with a couple of handfuls of more allergies diagnosed, but egg was not giving a reaction this time!! We had an egg challenge which went well so we are now able to introduce limited egg to the diet!

So what remains now? The liver, kidneys, lungs, heart, spleen etc have all been looked at! So, now the immune system. Her blood is fine, but part of the immune system has something to do with the cells, so thats next on the list. We are also being reffered to the paediatric gastros here in Wroclaw to speak about her growth (which is not really happening) and follow up in regards to her Celiac.

Now fingers crossed the genetic test and last sweat test comes back clear, but the doctor wouldn’t even consider that it may not as her lungs are GOOD! Woop woop!

I leave you with some images from Karpacz, all iPhone pictures, so just imagine if I’d had my proper camera!

-Linda