Monthly Archives: May 2016

Bolesławiec

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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!

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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!

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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!!??)

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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.

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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….)

 

Overwhelmed

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There is so much new information, ALL the time. Celiac… I know this disease, this is my forte, you could ask me almost anything about celiac and I know the answer due to my almost obsessive research. Now, EDS….. and the lung disease no one has ever heard of (including doctors) and that nobody can spell, the diseases and other things she may have or may not. Its just so much to take in. I thought I was ok with it all, that I was coming to terms with it but then I found myself bursting in to tears at physio today and I had to sit with my back to her looking out the window – quietly crying – until I was able to stop.

Not so much that she has all this, I can deal with that, but the fact is she is in pain. Almost daily pain, pain that will be better some days and worse some days but that will probably never ever fully go away.

This is why I cried. Because she is in pain. My tiny teeny little girl who never did anything to deserve any of this, who is so brave and hardly ever complains, she is in pain, and my heart breaks in a million pieces for her and I just want to take all that pain and put it in my body so she can be ok.

I gave her pain meds today, I have only ever done that once before. I didn’t know what else to do. Physio today with hubby there to support language wise was great, we will be getting various equipment for her, to help her stabilise this wonky body of hers, to help her with her pain and hopefully make things a little easier. Again. This is why I cried. 

I cried because my baby girl needs equipment. Not because she has EDS, not because she is different, but because she has so much pain that she needs equipment to try to alleviate some of it.

I cried because my darling girl, after a busy weekend was in so much pain just sitting in the car. I cried because I had to ask my husband to carry her because I knew she would hurt to much walking. I cried because she is paying the price of an awesome weekend with pain.

I cried because I cant – no matter how hard I try – ever take that pain from her.

 

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Physio take 2

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Went to our new physio today and it was a success I guess as he agreed to work with us!

She sad it didn’t hurt, which is fab, but the physio said her joints are very loose, which Im sure is not good? He did a lot of gentle massaging and bending and checking, more next time he says. We ran out of time.

He made me prepare videos of things to do at home, 3 times a day. Every day. Not at all overwhelming. (Note the HINT of sarcasm there…)

This afternoon has been a real struggle, she seems absolutely beat. Exhausted, but as opposed to her usually pale exhausted she is a nice rosy pink exhausted, so at least we know he got her blood circulation going! More physio on Saturday then Tuesday and again Thursday. Privately at the moment unfortunately as the NFZ wait list is like 2-3 months, lucky us we get to pay 3 times per week.

So grateful to have a friend who does school runs with oldest 2 mornings a week so we can rest tomorrow morning.  Who said being a housewife was boring? I hardly have time for housewifery between appointments, playing iPad games (my wine you see), and school stuff. It takes all my energy some days just to stay sane. I often wake up at 5 am and google crap, lately I google in Polish too, just to have my bases covered. My polish sucks, but apparently good enough for googling.

Then next week, I will, finally after needing to go for a long time, go to the dr for me. Im gaining so much weight and although I had it all put down to stress and eating chocolate on tough days (which is most days) its getting a bit silly now. Need to check on the thyroid and all the other usual suspects. Cant have the mum falling apart!

Oh, and then, just because I have to say it to people, to you guys…  a lady in the EDS forum Im in posts saying her kid may have CF and shes super scared, another woman goes, “oh CF, yeah, my friends kid died from that”. Really? People….. sometimes, its important to use our brains. Poor lady. The last thing she needed to hear in the middle of a possible diagnosis. As much as we, the mums of all these kids, want and need truths, we go to these “support” forums for support, not to get to feel like someone just shot us through the heart with a poison arrow. Ive been on the CF rollercoaster, and its not an easy ride….

Anyway, time for baths and stories and snacks and meds.

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Its May again

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May is important in my house as its Celiac awareness month. This is the first May that we know for sure all 4 of us have it. May is also Ehler Danlos awareness month, and Lupus awareness. How awesome is that? (Or actually not so awesome as it happens). As you know my daughter has EDS and is under investigation for Lupus. May is also when her birthday is!

I will do my proper Celiac awareness post later in the month, but for now, please, if you do follow my blog, pop to my facebook page and share some of the celiac awareness posts Im sharing in May. There will be a new one daily, all tagged #celiacawareness #nochoice #pleaseshare . Maybe we can reach another family like mine, a family that suffered greatly and had never even heard of celiac disease. Maybe we can help prevent some suffering somewhere. So head over, like or share or comment. And Thank You!

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Tesco Poland – Thank you!

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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!

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