Bolesławiec

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….)

 

Overwhelmed

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

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

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!

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.

Immunology update

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I forgot to blog about our most recent hospital stay. I did facebook and tweet about it, but not blog. I do that a lot recently, while I really want to document our journey I also find it hard to write, partly because Im so mentally drained, and partly because writing about it makes it so god darned real.

Im a happy kind of guy (ok, lady), I joke and smile and laugh, thats how I get through life, and that stuff that I feel deep inside, it comes out when I write. So when I don’t write…. its because Im not really ready to let it out.

Well, we went to the hospital, zebra blanket, food, toy box etc all in tow. We got admitted for our 36 hour stay and had all the immunology panels re done.

I still have to wait for the subclasses to come back, but the main classes are in, Her E is up almost to 1500 now (should be below 90), still not high enough for a hyper igE syndrome diagnosis but if it keeps going like this it will be eventually. IgE is allergic reaction, and while her numbers are off the chart there are no allergic symptoms. Her M is up (GREAT!) and so is her A and G, the G is particularly great news as it was very low before and its mid range now. If thats all greek to you then lets just say that all those numbers are representing different parts of the immune system. So while before she was borderline deficient in most, now her numbers are looking better, however, as the igE is so high we are still immunology patients. We were hoping to be signed out of immunology, but nope. First we need to see what the subclasses say (letter should come in a few days), then we must repeat all the tests again in 6-12 months. With the igE the way it is we may very well be immunology patients for life. So, immunology, rheumy and lung. Its ok. Im feeling very positive.

Having said all that, being in hospital was a great experience for me this time, we were in a room dedicated to patients doing infusions for CVID and similar. One young girl came in, around 14-15, she did the whole thing on her own! They arrived at 9, the nurses were there supporting but she infused by herself, she stuck herself, infused, and removed once done. She and her mum left by 12. Not sure if her next monthly infusion will be in her home or not, but I was as proud of her as if she was my own child. How amazing. And we CAN live with these things. Its not so bad! Me and her mum, we needed no language. She saw our Zebra blanket and A’s mask and we were instantly in this club together and her smile told me just how much she was there, really there with me.

All in all, immunology, yup, we are still there, but its ok 🙂 In June we go back to Rheumy, then in July back to Lung. Then – DRUMROLL – In September, kiddo tries to go back to school! Keyword here, tries ….

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Phone calls to everywhere

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 😀

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