Blood tests, ambulance rides and extra oxygen.

Well, I guess I knew it already as I was writing my last blog post…. we got to the clinic and they wanted to call an ambulance to send us to hospital straight away (in my opinion a slight over reaction on their part). I refused the ambulance (why scare the children more then needed?) and drove home to grab bags and iPads and food. Dropped son at neighbours and went to hospital where we were admitted.

This latest hospital stay was actually the smoothest one yet, maybe because I am getting so used to them? Or because I know exactly what we need? I actually have a bag thats always partly packed in a wardrobe, likewise we have a small bag partly packed for son. After this latest stay the bags will be improved further, but they sure do help a lot, especially if someone else has to go to my house to get stuff.

The hospital stay in itself was eventful…. Every test they could think of and then some has been done. It seems Celiac kids haemoglobin is high, her body responding to oxygen levels that are too low and trying to adjust them….. clever on her body’s part, but not good for her. The pneumonia was also a bit of a mystery, a strange kind, very severe, not the kind of pneumonia ‘normal’ people get. Well, my daughter is anything BUT normal, haha (that haha is mildly hysterical by the way). Its almost as if she enjoys playing games with science, because her test results are always a bit strange and baffling.

We were sent to a different hospital to be tested for Cystic Fibrosis. Its a sweat test. Above 60 is positive and below is negative, but a negative should really be below 30 or it needs to be investigated further. Celiac kids result was 49.

I am calm. Hubby is stressed. And I remain calm. Sortof. Celiac kid is super exited because the trip to the other hospital was by ambulance, and the super cute ambulance guy gave her both lights and sirens the whole way after she asked to hear them! Haven’t seen a smile like that in ages!

Normal people don’t GET this many pneumonias. Is it still her RSV as a baby giving us crap or is it the celiac and the crappy immune system being silly? At this point I think we need more answers, because if my counting isnt completely off we are now at something like 11 pneumonias, a handful of bhronciolitis and countless upper respiratory illnesses.

I actually think we struck gold at this latest hospital visit, because they are as concerned as I am, and I didn’t have to be assertive (read bitchy) in the slightest to get some action.

We were admitted on monday evening and they finally let us go Saturday evening after some straight talking to from hubby. They just cant feed a celiac kid in a hospital here, and if you really want someone to get better they need proper food! Thankfully her oxygen levels weren’t super low so she was only on 1-2 litres until Friday then she managed ok without.

We have been back to the hospital daily since. She is having her last antibiotics today. Next week we go to a mountain town that has a specialist hospital to be admitted for a few days, there they will check her lungs properly and hopefully before they let us go we will know more definitive answers as to why she keeps getting this sick.

We did the Cystic Fibrosis genetic test too, Im guessing they will repeat the sweat test next week also. The genetic test only checks for the more common genetic mutations but around 90% of Cystic Fibrosis should show up in this. To be honest I don’t really trust the sweat test anyway because I’m so used to my daughter having results that aren’t ‘normal’.

I wasn’t really going to write about this at all, but then I figured that its probably good to write about it, because no matter what the results are eventually, our story can probably help others. Much of the information about cystic fibrosis is pretty scary, but to be honest, if she does have it, then we already lived with it for 5 years anyway, so putting a name to it (whatever it may be) can only be a good thing so that we can help her. We are obviously hoping its something else, but lets see.

Trying to explain now why we are going to hospital without being particularly sick has been harder. Then the question ‘will they poke me?’, which breaks my heart, because obviously they will but I so don’t want to tell her this and make her cry! By poke, she means needles. She is still bruised black and blue on her arms from the IV going in last week, her veins kept bursting and it was only attempt 5 that was ok!

Anyway, thats whats going on with us. Hopefully you are all having a better month then us.

I have decided to stay as positive as I can, feed the kids the best and most nourishing food I can think of and just breathe deeply as much as I can. Me losing the plot is hardly going to help.

– Linda

Oxygen watching…. again.

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……

😦

DONT RING THE BLOODY DOORBELL!

 

When your kid is sick all the time…..

Pneumonia. Again. No, it wasn’t the last one that didn’t go away, its a NEW one. A FRIGGIN NEW ONE LESS THEN A MONTH AFTER THE LAST ONE!

I carry on, I do, I clean, cook, comfort, give meds, check oxygen levels and massage her back and cook some more and clean some more, and try not to worry and carry on…….

Horrible evenings with low oxygen levels, I pack bags and cry a little in my bedroom or the bathroom, the older kid cries and asks what will happen to HIM if celiac kid goes to hospital again and I carry on and comfort and cook and clean a little.

People tell me Im so brave and strong and all that other bullshit and I just want to scream because Im not strong at all, I didnt choose this, it chose us and I don’t have an option ‘a’ and ‘b’ where b is ‘lie on floor and do nothing’, so I carry on, that doesn’t make me strong, it makes me a mum. It makes me Celiac kids mum. And at times, I feel like this is it, this is our life, because it seems like we never get a break from it no matter what we do.

Im so tired, tired of doctors and tired of second opinions and people, PEOPLE! The ones who knows someone who knows someone who’s cousin had a kid like bla bla bla and have we tried bla bla bla….. I know these people are just trying to help but Im so freaking TIRED of all of it. Its not like we have sat on our bums and not done whatever we can to try to change this… we moved country for crying out loud!

I carry on, I try to live, I plan things and know they will probably be cancelled one way or another anyway, I clean , I cook, I carry on and in my head Im screaming at the top of my lungs because it is just so fucking UNFAIR all this shit, and how the hell can a 5 year old girl have had what, 9 ( or more ? )  pneumonias and I don’t know how many upper respiratory infections and bronchiolitis??? People DIE from pneumonias!! I am not strong, I break inside every time she is sick, how many times can you have pneumonia and actually be ok at the end of it? How many times can your oxygen levels drop THAT low with your heart having to beat extra hard and fast to make up for it and still be ok?

I am so tired. Not tired like I can sleep a bit and fix it, not even pregnant drewling on your chin kindof tired, but utterly exhausted, and if there was an option b to lie on the floor and just lie there forever and ever I would probably choose that……

But instead… I choose option a…. I carry on, I clean and cook, and cry a little in the bathroom.

Tomorrow allergist appointment and ‘normal’ dr. appointment, and off we go and carry on and bla bla bla….

Linda

I am home ALONE!!!

7caxrn5MiHOME ALONE!!!! I mean really ALONE!!! I know mums will understand after the long summer break, but imagine then that the last time I was home alone was April!

I am not going to clean, or empty the dishwasher, or fold laundry. Im going to sit / lie / veg around and do absolutely nothing! I am home alone baby, yeah!!

So here I am (alone – just incase you didn’t catch that part!). Not stressed in the slightest, because Celiac kiddo is at school with her brother, and today I wont go in for snack time or lunch, because they’ve got it all under as much control as they possibly can.

I keep promising myself I will put my school letter up, but by now schools have already started so I guess Im yet again to late. I will be starting a new section on the blog called stuff, check there in the future for the school letter and other goodies. The fact that I am sitting here, not stressed, is all to do with the school letter and preparations. About Celiac kid being prepared and every adult in school knowing what she can / cant do.

Sure, its a bit of work, but the payback is tenfold. HOME ALONE BABY! (yeah!!)

-Linda

One of those mums…..

So I was sat on twitter yesterday looking for interesting new people to follow, I looked at the ‘who to follow’ suggestions, and it was ALL allergy advocates, Celiac tweeps and egg allergy people. It suddenly dawned on me that I have become one of those mums. I don’t want to be one of those mums. I don’t want to have a kid who has egg allergy or Celiac disease, I don’t want to have to ask questions everywhere we go and carry a bag with food and baby wipes, I don’t want to wipe down the table every time we go to a cafe, I don’t want to be difficult at parties when I ask someone to please not touch my daughter with cake all over them….

But you know what….. I do all this. I do it because I have a child with Celiac disease, I have a child with a newly diagnosed egg allergy. I didn’t ask for any of this, and neither did she, but I do all this to keep her safe, because its my job to keep her safe. Im not doing it to be difficult, to annoy, to be one of those mums…..

I would give almost anything to not be one of those mums….. we are not in this for attention….. we scream and shout and tell and advocate for our children, as Im sure any mum would, to help keep our kids safe. If you love someone all the way to infinity and back, then you would do pretty much anything for that person wouldn’t you…? So here I am……

One of those mums.

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Eggs and dogs and underwear.

Its been a while. Ive been feeling very uninspired and lazy. Frankly, its been to hot to THINK. We have had days with 33 degrees, which is not so bad actually compared to Dubai, but in Dubai there is AC everywhere! Here, the closest I get to AC is standing in front of the open fridge looking for snacks. Me and the kids have all taken to wearing just underwear in the house.

(Funny that, apparently Polish people do a fair bit of walking around in just their underwear, lol,  Polish Housewifes facebook post , my friend Brooke has a whole blog post coming on the subject )

We had a ton of new medications given to us for Celiac kid, we are getting closer to answers. Seems her lungs, the bronchii (bhroncolii?) bits, are constantly inflamed, when it flares up and gets even a tiny bit worse, pneumonia or upper respiratory infection follows. We also now know that her bone pain is highly likely to be linked to her over use of steroids. Dr has her on a new medication and we are hoping to slowly faze out her other two steroids.

Her allergy test results are also back, and they say dogs and eggs. Both a total shock. Dogs, because although we have dogs, our dogs dont have the dander normal dogs have, they are a non shedding breed and most people with pet allergies tolerate them very well. Doctor also seems to think its wrong as nothing showed on dust, yet she reacts strongly to any amount of dust. More testing needed in that department. But EGG! It all makes sense once I start reading…. egg allergy can cause wheezing, respiratory issues etc etc etc. So on the one hand Im numb and a tad devastated that she can no longer eat eggs, but on the other hand, I feel a little like we just won the lottery, because maybe, just maybe this is the answer we needed, and maybe, just maybe, her lungs will finally be able to improve!

We have also consulted a naturopath, who also happens to be one of the ladies I met with just when I started GlutenFree UAE, her daughter is gluten intolerant. She gave us some great advice and I hope to share all this with Celiac kids Dr – who seems very open minded – and hopefully we can all work together to help make this awesome shining star of a girl feel a bit better.

Celiac Kid’s comment when we told her about the eggs was ‘but mum, thats so lucky, I don’t even like eggs!’ , its true, if she knows something has egg in it she wont eat it, the only hard blow here is ice cream and pancakes. Awesome kid that she is she is already getting stuff out of the drawer asking me if she can still eat them, ‘has it got egg inside mumma?’.

We still haven’t been on our holiday, but should be off soon, then school starts with all the work that comes along for us gluten free mums, new classroom, teacher etc. I never shared my school letter last year, I will be sure to do so this year. I edit it yearly to suit our needs so have a ton of versions already 🙂

Off to make glutenfree – eggfree cheese rolls now 🙂

Have a fab day!

Linda

sad-egg

Please note, its the egg thats sad, not us! 😉

Shopping #glutenfree, then and now.

Yes I hash tagged the title. Is that bad? I guess Im lazy, now when I share it on twitter it will have the hashtag ready made! 😉

organic_food_shopping

I talked about shopping before, shopping for food can become a huge part of a gluten free persons life. We are a family of 4 humans, 3 dogs and 1 bird, all who eat gluten free! Its my job to shop for us all.

The first shop after diagnosis is a far cry from how I shop now. Its a far cry from how I shopped a year ago, or even 2 years ago. We all eat wheat and gluten free. Yeah, wheat free and gluten free are not always the same thing although I really wish they were. many so called  gluten free items out there are a no go for us.

So how do I shop? How long does it take? How many shops do I need to go to?

At first Id go to 3-5 supermarkets a week, the shopping would take anything from 30 mins to 2-3 hours. I rarely take longer then 30 mins now, I don’t read labels much, partly because they are in polish and I cant, and partly because I have cut out most of the processed junk we are so used to eating. Cutting out the processed junk means I no longer need to go in most aisles!

I go in the fruit and veg section, the meat section and dairy section, I take a quick peek in the gluten free section, and occasionally buy something. My processed foods are few and far between, passata, non gmo european corn, tinned chickpeas, artisan gluten free sausages, organic muesli bars (gluten free obviously), rice cakes and a few other bits and bobs. I do this every 1-2 weeks. Then I do small top up runs in my local fruit and veg market and a meat top up dash when needed that takes a few minutes. I only buy fish frozen, as fresh is not that easy to get here.

Thats it, khalas, done!

Do I still obsessively go in shops to look what they have? Sure, do I try new gluten free things whenever I see them, NO! Why? Because I don’t really feel we are missing anything in our lives or pantry. I try new products only if its a product we need. I am such a saint. (Of course I haven’t mentioned the jelly beans and occasional marshmallows and chocolate that sometimes slips in, that would make me sound far less healthy and saintly, but hey, this saint is human, and sweets don’t count, as long as you only eat them on Saturdays…right? 😀 )

If someone had come along 3 years ago and tried to teach me to shop how I shop now, I am not sure how I would have taken it, things were still so new, maybe I needed to go through that fase of trying everything to really figure out we didn’t need it, maybe I would have embraced the knowledge and saved a lot of time, not to mention money!

I have learned so much about gluten and pesticides and CRAP in our foods in the last few years, that even if Celiac was cured tomorrow, no WAY would we go back to eating how we used to. I have always loved cooking, always liked and preferred to make things from scratch rather then a packet, my ingredients though have changed so much.

I would love to hear how your shopping habits have changed and if there is any advice you wish someone had given you at the beginning? Or do we need to learn it by living it?

-Linda

(I share a ton of rantings and food tips on facebook, join us!)

 

Celiac Awareness doesn’t end with May.

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So, Celiac Awareness Month is over. But for some, for us, the need for awareness never ends. For us, Celiac disease is very real, we live it, daily. For us, the need for safe gluten free foods is a huge big deal. For us, the need to educate about safe gluten free foods doesn’t end when May does. With so many people ‘jumping on the bandwagon’, with so many people believing gluten free is a fad, with so many establishments preparing gluten free foods that aren’t really gluten free, the need for awareness is on going, every day, 365 days a year.

I want to say a big thanks to a couple of the ladies in my bloggers group who wrote about Celiac during May, Lois, from a Polish Housewife – post here – and Brooke from and two makes crazy – post here – Thank you both so much.

I also want to thank all those who spent the month liking and retweeting tons of my stuff on twitter, Im there as Linda_FB , find me 🙂

So I will keep spreading awareness in any way I can, and next May I will ask for all all your help again.

THANK YOU!

Linda

We have the muppets.

Sometimes I think to myself, if I wrote about ALL the stuff that happens in our life, people would think I made it up. So I wasnt going to write about the last few days, but I will anyway. Because Im laughing now, and its funny in a comedy movie sort of way. Short version.

Thursday afternoon going home from school A (Celiac kid) says her cheek hurts ALOT. I think maybe she has a small sore in her mouth, maybe she got contaminated. With clean hands I check the inside of her cheek. Nothing there.

Fast forward to two hours later, I’m lying on the sofa playing some game on my iPad, kids are watching TV. I turn around to look at A who is whinging about her cheek and I literally FLY up and in to action. Her cheek, on the side, slightly below the ear, has swelled up to golf ball size! All Im thinking is airway! What if the swelling is inside too! Call our doctor who says she cant see us straight away but to take her to the emergency room. We already had shoes on! GO! Mad drive through the city. Get to emergency room. 2 doctors and 4 nurses then spend ten minutes arguing about how to do our paperwork, kids are Polish, but have no pesel numbers (long story). Im thrusting my credit card at them saying it doesnt matter we arent asking for free care, we will PAY, just please LOOK at her. Finally another doctor looks at A while the others argue with her that its against the RULES (people in Poland are very concerned about rules and the right way to do things – at times, its infuriating – because while they all argued, A had swelled up further). She reassures me there is no threat to the airway, but because we are paying we must go to another part of the hospital. Off we go, its far enough that we need to drive around.

We get to the gate I think we are meant to go in, and the man speaks no English, I refuse, REFUSE to give up, so I shout at him in English, Im tired of being ignored (in general, not by this man), its a hospital, my kid needs to be seen and I cant understand you and LET ME IN GODDAMMIT! Barrier opens. Jenki bardzo! (later I realise we actually parked in the doctors only parking, poor guy, but at least shouting in english sometimes works. I need to send the poor guy flowers or something, I thought he was just being difficult because I was speaking english – oops!)

In this part (of the hospital) we are helped instantly. The hospital is huge, clean and very empty. A doctor and a med student see us. After a while the Dr calls for all the english speaking med students to join. Story of our lives, A is an interesting case, but hey, the more the merrier 🙂

The doctor is very concerned that it looks like mumps, and although A has been vaccinated we are at that point again where we wonder, does A’s immune system know she has been vaccinated? I call my husband, tell him it may be mumps, he’s like a gigantic question mark, SWINKA I say. Because Im getting really good at Polish disease names and hospital lingo.

Because its suspected mumps we need to go to another hospital. Some infectious disease place. The couple behind us warns me in english the place looks awful and not to be frightened, its not as bad as it looks. I think in my head it must be like the Poznan place and smile and say thank you.

GPS and me and kids drive to the other hospital. Well. GPS takes me to allotments in the middle of nowhere, I reverse, go around. Search. Eventually hubby has to help by phone, him and his Polish friends all get involved. We need to go to opposite the graveyard! but opposite the graveyard there is something that looks like an old deserted asylum, the kind of place horror movies are made in, you go in…. but NEVER come out….. I drive around, many times. I find a door, hubby says, ‘Go in and ask’. I sit, in my car, thinking NO WAY. Im laughing pretty much the whole time, I actually started laughing already in the first hospital, because these things, they only happen to us.

I take photos, because Im thinking no one will believe me. They are all iPhone photos, not great quality, but I have to share them…..

 

So, hubby calls them, and they explain exactly in which part of this huge complex they are. By this time its getting dark, and the feeling that Im in a scary movie is hard to shake off.

I park, away from walls and shadows, haha! And walk towards the building. A nurse nods and smiles and points to some chairs under a tree. Wait there she says. Im not kidding. Under a tree.

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Part of me now thinks Im in some joke show, you know where they pull a prank on you and someone will jump out in a minute and explain its just a joke.  That doesn’t happen. Instead a dr. opens the door and lets us in. She doesn’t look like someone from a joke show OR a scary movie, she speaks english and she’s lovely. She examines A and says no tests needed. She believes its an infection of the salivary gland and not mumps. She goes to type some forms for us and I cant help it, I have to snap some more photos, because  feel like Im in a time warp of some kind and Im in the wrong decade… possibly even century!

I get my paperwork and get in the car. My phone beeps and I look, its from hubby. ‘So, is it muppets?’.

-Linda

A note, I have now been to 5 different hospitals in Poland and although two of them were extremely old buildings the staff have all been great. Most medical facilities in Poland look nothing like the one above so don’t let this post put you off. 

My Celiac Awareness Post

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May is for Celiac Awareness.

In the UK Celiac is spelled Coeliac, same in Australia and New Zealand. In the UK they have Celiac Awareness week, rather then the full month they do in the US. Its in May, so for me, May is for Celiac.

Celiac Awareness is not really needed on a blog like mine, because to me, Celiac Awareness is about reaching those who are NOT here on this blog. Those mums endlessly walking their screaming (undiagnosed children), those dads who scratch their elbows with a knife because their (undiagnosed) DH is itching so bad. The women who have been trying for years to become pregnant. Those who struggle daily with stomach issues and put it down to IBS or stress (yeah… could be undiagnosed celiac).

Of course, not all people with stress tummy or an itch or whathave you have undiagnosed Celiac disease. But the numbers speak for themselves, in Europe something like 1 in 100 (slightly less or more in some countries) have Celiac, in The US numbers used to be 1 in 133, thats now thought to be incorrect and latest figures show similar to European figures. And how many are diagnosed? Hardly any. Estimates say that somewhere around 97% of Celiacs in the US today could be undiagnosed. In Europe they talk about numbers around 80% (varies from country to country).

So that pretty much means most of us know at least 1 undiagnosed Celiac. Maybe they have classic and visible symptoms, or maybe they are walking around with nothing other then slight anaemia or feeling a bit depressed. Thats the thing with Celiac. You can have diarrhoea or be constipated, you can gain weight or loose weight, you can have aching bones or depression. There are 300 symptoms to date associated with Celiac disease, and a sufferer can suffer only one symptom, or 50!

The people who need to know all this are not Celiacs, the people that need to know all this are people who may never have heard of Celiac!

Then the other part of Celiac awareness, the one that explains to the world that Celiac is an autoimmune disease, not a fad. Not an allergy.  The one that explains what gluten actually is. A protein, found in wheat, rye and barley and all products thereof. The one that talks about cross contamination, and explains that one breadcrumb is enough to hurt someone with Celiac disease. The one that explains that although we may not suffer anaphylaxis, there is long term damage to our systems every time we are exposed to gluten, and a Celiac who keeps being exposed to gluten can suffer other life threatening diseases such as cancer.

Eating just a little bit of gluten, is not an option. Some may not react to ‘just a little’, but the long term damage on the inside still occurs.

I am asking you all a favour today. Help us spread this awareness. Help us – the Celiac community – to spread this awareness as far as we can. Please share this post, or one of the many other Celiac awareness articles out there. If you see it on twitter or Facebook, like it, tweet it, share it. Help take the awareness further.

I also have a challenge for the bloggers out there, the non gluten free bloggers. Please, if you can find the time, write a post about Celiac for Celiac Awareness Month. YOU can reach exactly the person who needs to read it. I already gave this challenge to my small expat bloggers Europe group, and two lovely ladies accepted the challenge. I will be sharing their posts next week, along with yours if you accept 🙂

MAY! Is for celiac Awareness. May is when my own little Celiac was born. How oddly appropriate 🙂

Linda

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