Monthly Archives: March 2015

Pinterest to the rescue!

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Feeling so much more positive about the homeschool / outschool situation. Had a positive meeting with school on Friday and then decided to browse Pinterest for homeschool stuff! Needless to say I already decorated the entire new school room in my head several times over by now!

Stress levels are slowly going down as well, plenty of rest and good food and just coming to terms with it all, so much to take in, and it takes a while to sink in.

Whatever will be will be, and I have accepted it. Really I have. We just have to take it one day at a time and see how we go along, and when I falter I will go and look at pinterest again. (!!) Check out my new and lovely homeschool board. So exiting. We move house in May and we have a large room ready to be the new school / chill / hang out room.

My shopping list and to do list is growing. 😀

Thank you all who commented and sent me private messages over my last few posts, your support means so much to me, to all of us.

-Linda

Yesterday my heart broke a little……

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We were sitting in school Celiac kid and me, waiting to pick up big brother. All of a sudden I realised she wont be back there, not just for ages, but ever. The school is building a new building, and if/when she does go back, it wont be there.

Its very different sitting in school knowing you can send her back any time you like because you took her out, just for a bit, to sitting in school knowing she cant go back for a year or 2 because the dr. said so. Even though its what my mummy heart has wanted and thought about for some time, the fact that we now have it on paper just seems so final.

The lumps in my throat got all big and horrible and for a horrible moment I thought I might cry. I didn’t. Thankfully, lucky none of my closer mum friends were there, because if one of them had asked how I was doing the floodgates would have opened.

Im ok, its for the best, and I know that. But there is still this huge sadness inside that soon A’s class wont be her class anymore, it will just be the class that she should have been in if she attended school. As new kids come and go, “her class” wont even know who she is anymore.

Onwards and upwards now with positivity. I am mourning but I should be celebrating, because we may be looking at a year or two with no pneumonias, and maybe even no hospital stays? Thats got to be a good thing, right? A year or two with mummy all to her self, a year or two of doing whatever she wants (within limits obviously). A year or two of me not stressing every time the phone rings (incase its school calling to tell me to come get her quick). A year or two with one on one teaching and learning!!

Bring it on, Im ready (or am I?…)

-Linda

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Stress + Food = weight gain!

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I am the heaviest I have ever been, I actually weigh more now then I did when I was pregnant! Im not super fat, Im actually not really overweight even, but having always been super skinny I feel like a huge big blob!

60kg, I mean hello? I never thought I would weigh a number like that (I am 162cm).

LCHF was great for me, I started in June last year and quickly lost 2-3 kg, then stalled a bit but kept at it because I felt great. Then cheated lots at Christmas and in January I fell off the wagon completely, not my fault really, I was in hospital with celiac kid and lived on bread. Just didn’t really manage to go carb free again after that. To much stress and with the stress this hunger that can only be “cured” by eating popcorn, quinoa, millet and potatoes. Not the worst carbs in the world perhaps but carbs all the same.

Then the weight gain, aaaagh. Been reading about stress and cortisol and what it does to your body, puts you in fight or flight mode, long term stress has a direct link to belly fat, which is where all my fat sits! So I guess I am forgiven? Things have been so crappy lately I figured if a piece of chocolate makes me feel better then I totally deserve a piece of chocolate… right?

I will go back on LCHF, when Im good and ready, I will also start doing my steps properly again with my fitbit. When you are at home with an unwell kid or in hospital then its hard to go above 3k steps!

For those of you who want some LCHF inspiration, check out my LCHF album on facebook! 

-Linda

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When the going gets tough….

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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

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An unwilling homeschooler

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Yup. Not only am I one of those mums *insert eyeroll*, I am now also about to be one of THOSE mums *insert even bigger eyeroll*.

We are back from the lung hospital. We have the results from the immunologists. And guess what, there is nothing wrong with with our kid! (Apart from recurring pneumonias with low oxygen levels).

PCD, CF, back normal, no growths or foreign objects in the lung. No asthma although she may be heading that way. A couple of new allergies diagnosed. All immune levels are ok, some a bit low, but within the accepted range, some signs of autoimmune activity that needs to be followed up but thats it.

The doctors agree that its not normal to get so many severe pneumonias, and they agree the low oxygen levels that go along with it are also not normal, all our specialists were so sure they would find something, either in the lung or with her immune system, and I know I shouldn’t be disappointed, because obviously its great news that she’s ok and its not one of the big things, but I cant help but think that this isn’t over at all….

Oh, and there is a plan. Her pulmonologist and immunologist agree that she needs “time off”. A year off school I asked, and the reply was; “probably more like 2”.

I should be happy about this as well as my gut instinct has been telling me for a good year or two now to take her out of school so she can rest, but again, I feel cheated somehow, I wanted a better answer, an answer where we could actually DO something.

I know, it makes sense to have her rest and not be near other kids for a couple of years, if one pneumonia takes 6-12 months to get over she really does have her work cut out for her. But a diagnosis of ‘lots of bad luck and vicious circle and immune system that needs to mature etc’ just doesn’t sound very much like a real diagnosis to me.

One of her antibodies to pneumonia was a little low, but not so much, her overall igg is a bit on the low side but acceptable, the igg1 a bit on the low side but acceptable. FUCK acceptable. Acceptable doesn’t get us anywhere. What if we wait two years and then after that there is no change?

Now back on to the steroids also, yeah, the ones that make her not grow and suffer from bone pain. The ones that make her cry walking down the stairs, the ones that when she came off them she rapidly grew 3 cm!

Im so so tired.

On the bright side we have had doctors confirm she shouldn’t be in school and the paper work to support it. On the not so bright side I need to come up with a home schooling plan in a country where you are only allowed to home school in extreme cases and if so then it must be in Polish.

Anyway. Bla bla. Still sort of processing all this, and Im feeling positive, ish, but also not so much.

Deep breaths and all that.

-Linda

Krakow for the day

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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

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Keep your germs to yourself!!

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Its not easy to blog when your stress levels are through the roof. I don’t really feel so stressed but the fact that I cant focus on anything and feel like I have ants in my pants tells the real story. 6 days until Krakow hospital and tests there, then the lung hospital in Rabka. Its like – yet again – our lives are on hold while we wait for this. Celiac kid wears a mask out now and we take a thousand and one steps to ensure she remains un exposed to crap.

Have you ever noticed that people in supermarkets tend to cough straight out in to the air without covering as if they were home alone? In malls its the same thing! Or even worse, they cough over their shoulder and the cough germs lands on the poor unsuspecting person behind them!

The other day in the pharmacy the lady at the till was so obviously ill (coughing, sneezing, and generally spreading germs) that I actually walked out. I mean YUK! And, COMON!!!

I have now become like this grumpy old woman, because while I cant run up to these people and punch them in the head I can show my annoyance with loud comments of YUK and “eeew, Celiac kid did you see that disgusting lady coughing without covering?”

Shameful? Not for me, I assure you, but hopefully for the germ spreaders. You notice a lot when you live like this that you may not otherwise see. Like the lady in TK Maxx two days ago picking up the tea packets and smelling them, but I mean really smelling them, her nose was touching each packet and stayed on the pack while she obviously enjoyed the smell, pack after pack until her nose germs was on like every single one! I was trying to stare as evilly as I could as if my staring would shame her to stop. I mean, is it really normal to do stuff like that? Or am I uber sensitive to peoples germs all of a sudden? Im sorry, but I wouldn’t want to buy that tea ever in a million years after seeing her do that. What is wrong with people?

Even with a mask on and me providing hand wipes and alco gel constantly, it just seems that most people are so disgusting when they are out shopping that going out is just super dangerous. We can avoid parties and crowds fine, but we have to buy food!

Next time you go out to shop, cough in your bloody elbow please and don’t TOUCH stuff with your nose!

eeeew.

-Linda

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The masks are from Etsy and can be found here 🙂