Category Archives: Health

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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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 🙂

Everything happens for a reason…. right?

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Not going to update you all on speculations. There are many. When I asked our doctor if they would find it this time the reply was ‘we are not letting you go til we have’. Feels good, reassuring. I cant wait now to find out, I cant wait so that we can help her.

This last pneumonia scared the living daylight out of me…. at one point we had 12, yes twelve doctors in our room, from ICU, pulminology and immunology, all trying to figure out what to do with this tiny weenie little girl who kept going lower and lower with her oxygen levels.

She didn’t speak for 4 days, then on the 5th day small words came. Day 6, finally sentences. Im in bits now. I wasn’t then. I was the calm and collected super mum, always am. After… thats another story. Day 8 we went home. We have enough medications on the dining room table to run a small clinic.

So now what? We wait, we wait for test results on the IGG subclasses (other fancy terms no parent ever should need to learn!), then once we have those we go to Rabka, another hospital in the mountains, but with more advanced diagnostic methods, they may need to see the inside of her lungs (how the hell this happens I have no idea, Im scared to ask).

Then after that, unless we have a 100% diagnosis at that point we are off to Krakow to the immunology hospital there, who have diagnostic tools that they don’t have here.

Whatever is going on with pumpkin pie, its not her celiac. This crap, its something else. No stone will be left unturned, but the belief is that its her immune system, something I have been saying for a couple of years now.

I do believe everything happens for a reason, and if this is what we have been sent to deal with then so be it. We need to try to make the best of it and do the best we can to make life as “normal” as we can, for celiac kid, but also big brother who always ends up coming second.
And no matter what we are going through, there are always people who have it far far worse. Complaining wont help.
We are still lucky. We could be the far far worse people….

-Linda

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So here we are. Hospital stay number….?

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Blogging in hospital. We spend so much time here so why not? I should have had a blog called ‘hospital reviews around the world’. Been in enough of them…….

So yeah, we are in again. Did another one of those crazy drives across town like a race car driver. May even have run a red light or two.

Bypassed the entire waiting room and got seen straight away. Super low oxygen levels will do that. Got admitted, obviously. Been here a few days now. Had a hairy couple of days where the threat of ICU and a breathing machine was very very real.

We have a new personal record in low oxygen levels, and celiac kid is not going back to school for the foreseeable future.

The immunology department are running tests now while we are here. We still don’t know what caused this pneumonia, a rare bacteria? The first lot of antibiotics wouldn’t work so a much stronger, third generation antibiotic was started.

Feels like being on a particularly scary roller coaster, but without the fun or thrilling parts.

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Anyway thats us.

Linda

Does fun = Junk?

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obesity-snapshotSo, I have gotten rather heavily involved in the PTA this school year. Yesterday we all had a meeting to plan the events for the rest of the year. Not the first meeting, there have been a few, and in the events department the thing that keeps popping up is FOOD.

As one of those mums, any event involving food is just another opportunity for my child to feel singled out, lonely and different. As a mum, this ties my stomach in to knots. Big ones.

Food – in my opinion – has no place in school unless its eaten at lunch or snack time, and then it should be the child’s own food thats consumed, and no junk.

Having a Fun food Friday or a similar event is ok, but only if the food can be enjoyed by all and is healthy!  Try telling that to the PTA! haha. Apparently, food is only fun if its junk. Apparently, it has to be mc Donald’s or Pizza or there is no point. Now, Im sorry, Im not trying to be a party pooper here, but hasn’t society ‘got it’ yet? That obesity is an epidemic? That we are raising a generation of kids that eat as much sugar in a day that kids a century ago may not have eaten in a year or even in their lives? That heart disease in the young is on the rise, as is diagnosis’s such as ADD and ADHD and concentration issues etc are also sky high? That giving the kids a meal of Mc Donals’d is not FUN at all, but in fact teaching them that rewards = food, fun = junk and sending the wrong message entirely? Couldn’t Fun food friday be fun in the park friday, or fun fruit salad making day? Or just fun food friday involving something other then high starch high sugar high toxin foods that I as a parent don’t want to feed my kid like ever – gluten or not!?

My celiac kid, she know she is different. She knows she has to eat only her food. She knows junk is bad. We go to extreme lengths to make sure her food is highly nourishing, packed with vitamins, and mainly sugar free, organic etc. We think 11 pneumonias is enough and we do what we can to strengthen her system, her body. So what message does it send when school wants to serve junk and on top of that they choose to call it fun!

Don’t even get me started on birthday cake celebrations. WHY? I am sending my kids to a private school to be educated, I never asked for them to be served cake. Again, its just another time my child gets to feel different, not just my child, many children. I am paying for my children to be educated….. not to sit and be made to feel different. Hate what I say all you like, this was my opinion before our Celiac diagnosis also. We actually chose our last school (before diagnosis) partly because of their food policy! Their policy allowed no junk, fizzy drinks, cakes, donuts, chocolates etc in lunch boxes, no nuts, no food sharing, and no birthday cakes. No birthday parties during school hours (woohoo). For childrens birthdays, parents were allowed to bring in a small sealed bag with a treat or toy for each child, it was given at the end of the day and any food items were not allowed to be eaten in school. The school soon had half of Dubai’s allergy kids in it, because the policy is fantastic, and guess what, no one ever complained! Those were the rules and thats that!

We couldn’t choose a school here in Wroclaw based on food policy because the schools we visited did not have a policy. I asked about food policies and birthday (cake) policies and was met with shrugs and question marks.

Its 2014! Aren’t we, parents, teachers and educators more aware then this? Shouldn’t every school have a healthy eating policy? Should we not stop giving kids unhealthy foods as treats? From the PTA meetings it seems that I am in the wrong and Im just alienating myself talking about it….. even more reason to have a policy set by a school, because this way you are taking away my choice of what to feed my child. Because obviously if the other kids eat junk I will replicate that junk best as I can, and she will still feel different and it is just so not ok.

Just one last thing, my children are not deprived. They eat nice food, they eat good food, sometimes its even fun. But its not junk, so shoot me!

-Linda

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Don’t forget to join in the fun on the Facebook page!

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

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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

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The meaning of life…..

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Pretty deep right…? I am not very religious, I don’t really pray or go to church, but I believe that good things happen to good people, I believe there is a reason for everything, I believe that what happens to us has some kind of meaning, reason. I have to believe this, because thats the only way I can really accept it. It is very clear to me why Celiac kiddo, MY kid was diagnosed with celiac…. because the UAE needed us. Look at the massive change and impact my campaigning has made to the lives of thousands in the UAE. Blatant obvious reason. It was meant to be, it had a higher purpose.

But now…? WHAT THE HELL is the meaning of this? Have I not done enough? Can I just please rest now? I cant make sense of any of this. Its not fair (<- said in the voice of a grumpy 3 year old child). Im tired now, I need a break….. we all need a break.

Not a holiday break kindof break, but a go to school every day and nothing crappy happens for ages kindof break. Its not really to much to ask is it? I keep paying stuff in to the karma bank and I do whatever I can for others, charities etc….and still now…. Im just so tired.

So much for opening wordpress to try to give you all an upbeat happy post….

Really, Im not an ungrateful cow, I know I have so much to be grateful for – even in all this. I am grateful every day that we are together, that I can spend every second on my day on focusing on my children, that we have awesome doggies, that we have a nice house to live in and can afford to buy the best foods the shops have to offer. That my kids go to a great private school with small class sizes, etc etc etc. But now, please, I just want normal. for a bit…..

-Linda

Oxygen watching…. again.

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Is there anything worse then sitting and listening to your child’s breathing..? There is this fear that is just unimaginable. Like now, her fever is high, the wheeze is not so bad, but I can hear that she is starting to breathe faster… its like I am just WAITING. What the hell am I supposed to do? There is nothing I can do…. just wait. People don’t get it, no one gets it. I don’t need anyone to get it really, but the well meaning ‘oh, yeah, when such and such was little he was sick a lot too’ just makes me feel even more isolated and angry, because this kid is nothing like that kid, this is not a kid who is sick a lot, this is a kid who goes in to respiratory distress, falls unconscious etc etc, and it can happen at rocket speed! So I am sorry, sitting here watching my kid breathing… but that such and such kid that was sick a lot…. he/she is nothing like this. Im tired of this, Im tired of people not getting it, I am tired of it being belittled, Im tired of waiting… Im just so bloody tired. I wish (as horrible as it is) that there was someone out there who actually really ‘got it’. I think it would maybe, just maybe make me feel a bit less alone. I just want someone who understands, truly understands to give me a hug.

I know I know… I should stay positive etc, and I am always the one smiling, trying to laugh it off, shrugging with a smile and saying, ‘well hey, life goes on’ etc etc. I often tell people that we are the lucky ones, because its not a brain tumour or leukaemia etc. And I really DO mean it…. most of the time.

Its not so easy being that positive all the time. Its not so easy shrugging things off when fear holds your heart in a vice like grip and you think your brain might haemorrhage just from too many thoughts being in there.

I was talking to my husband the other day about what WE are going through, we as parents, and especially me as I am the one dealing with it all, and the truth is that if I actually had a job (which I don’t), I would probably end up being signed off for years due to hitting the wall, stress, burn out and whatever else you might want to call it. I cant be signed off of anything though, because this, here, sitting and listening to her breathing is my job, and there is no one else to do it.

How do you handle living like this? I have no idea… Im trying super hard to think about things like how the grass needs cutting and what we should have for dinner, although at the back of my head there is the hysterical voice going;

“ok its ok shes still breathing slowly, oxygen is 94 its still acceptable no need to panic just yet, what the hell should I do with V if we need to go to hospital, I wonder who will watch the dogs, should I pack the bag, wonder if there is a fridge in the hospital and if P’s mum can come and stay for a bit, shit what about the school party on saturday, is she still breathing for fucks sake calm down woman she’s ok we are still home just calm DOWN it will be ok it will be ok it will be ok… but what if its not, thank god she’s sleeping now, omg what if someone rings the door bell and wakes her, oh no… someone bloody well better not ring the doorbell I will KILL them, is she still breathing????”

Dr’s appointment in 5 hours and Im afraid its to late, that we will have to go to hospital before that……

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DONT RING THE BLOODY DOORBELL!