2 kids go to school

When a little zebra was 3 she started school in Dubai. Since then, I think I can count on my fingers how many weeks she did full weeks of. There was always something. Random fevers. Endless pneumonias (as my facebook “on this day” thing constantly reminds me), ear infections, horrendous fatigue and so on. Almost 2 years ago Dr’s finally put their feet down and my zebra stayed home.

I can not even begin to tell you all how difficult it is to have one child at school and one at home, especially when the one at home has to wear a mask in public and not be exposed to anyone or anything.

The 1st of September my baby girl went back to school!

My baby girl did. not. have. pneumonia. in. September! This has never happened before. My baby girl went back to school and apart from one day last week she has been there every day!!!!

And I became a good person again! I haven’t shouted at my kids once! I have been in the supermarket alone! I have had glorious naps without someone whinging at me for sleeping! I have watched TV, in the middle of the day! I have been alone!!!! I know this is supposed to be about her but oh my gosh it is so much about me too! And its about my awesome son, who has a mum who can be nice again, like every day and not just occasionally.

I didn’t realise the strain Ive been putting myself through until finally I had that first day on my own. Wow.

I get to write a blog post without people screaming and fighting about who should get to go to the bathroom first. I mean, I love my kids, more then anything in the world. But 1 and a half year of never once being alone makes you a bit edgy (read absolutely flippin psychotic).

Now every morning I drop 2 happy kids to school, and a happy mum picks up two happy kids.

These new lung meds….. thank you!

One day at a time, October, be good to us!



Mummy goes to the dr….

I went to the doctor about 2 weeks ago.

I went to the doctor about two weeks ago and I was absolutely fine.

I went to the doctor about two weeks ago and I was absolutely fine before I went and now everything seems to be wrong with me.

So yeah… I went to the doctor. Bad move Linda. Bad move. There is a reason I haven’t been in years…. It appears this mum here is a bit broken. I am also out of the closet. For the first time ever in my life I told a health professional I have celiac (I also told her Im in denial and haven’t accepted it, but I did tell her I have it).

A few days after my doctors visit and having done about 5 pages worth of blood tests I went for a scan, and guess what?


I do however have two rather large cysts in my uterus that need removing. Nice huh?

So you can all shout at me now, about how I need to see a dr more often and how I cant look after 2 kids if Im not well myself and I need to look after myself and bladibladibla. I know. I know! After this I will go more often, I promise.

I have an appointment with my surgeon on Monday and then hopefully shortly after they will remove my invaders. Am I worried? No, because Ive had this same surgery before and always knew it would happen again.

Now all I need is a cleaning lady, a driver, a nurse, a chef, etc. A wife basically? Any takers?😛

Oh well. Its official. I am a celiac. And also a tad broken.

Oh well. As you were…..



When Celiac gives you presents…..

I talked before about how we are not one of those Celiacs that just get to go gluten free and be done with it. Noooo, in our daughters case (and possibly mine but never mind that lol) Celiac has come with some extra special gifts.

Aili has had bone pain on and off for many years. After her Celiac diagnosis we thought “oooh, thats why she didn’t want to walk / put her feet down, she must have had bone pain”, then the years went by, and the bone pain, it never really went away. From time to time its been really bad, with tears when she has to use a staircase, at times so bad she doesn’t want to walk and we use a pushchair still even though she is 7. We often put it down to her Celiac, I heard myself say many times to people that “she probably has weak bones from not being diagnosed quick enough”. I even explained to people about how when you have no villi your body cant take up any nutrients and your body will suffer.

Villi are the small tiny “hair” like things in your small intestine responsible for “soaking up” all the nutrients in your food. In a Celiac who is eating gluten, these tiny “hairs”get destroyed resulting in a smooth small intestine that in incapable of taking up any nutrients, resulting in varying degrees of malnourishment. 

Most celiac’s of course go gluten free, the villi heals, and over time they feel better. In Aili’s case feeling better hasn’t really happened. Yes, she is growing, no, she has no gluten exposure, but she still has many symptoms from many different things, some still unexplained.

We thought for a long time that her bone pain continuing was growing pain or her silly low vitamin D causing issues, then once the EDS diagnosis came we put it down to that.

I thought a few times about a bone density scan, and it was mentioned to me as well but it was never done, until this summer. When they told me we were doing it I was super happy, because its good to know stuff, not suspect or think.

So yes, bone density done, and yes, it is low. Very low. Far far far to low for a 7 year old. And bingo, a new diagnosis. Osteopenia. Osteopenia is not as bad as Osteoporosis, but its bad enough. Osteoporosis is also known as “brittle bone disease” and Osteopenia is the stage just before that. The bones are weak but not brittle.

We are lucky though, even though our GP had told me to take her off the vitamin D as her levels now are acceptable (they had just crept above 40), I continued them at a high dose. I know Aili better then most and I know what happens to her vitamin D levels when she is not in the sun daily or doesn’t take supplements.

Not saying anyone should go against dr’s advice here, but sometimes you have so many dr’s telling you different things you just have to make some decisions on your own.

I told our rheumatologist I had continued the D  and she actually smiled and gave me a high five, she said things could have been much worse without and to keep giving the D at exactly the dose I am. Now Aili is on other meds as well to help her, but unfortunately the steroids she must take for her lungs counteract with those meds, so all we can do is hope for the best. We were letting her rest a lot because of the Ehler Danlos and the fatigue that comes with it, but now with the Osteopenia we need to push her instead, more walking, not less. Her bones need it to get stronger.

Our lung dr. who has been reading up about Ehler Danlos and osteopenia says that Ailis case is so rare we may not ever fully know what symptoms are linked to which disease, we can learn about some of the diseases separately, but we may never know exactly to the full extent of what is going on with her. We suspect she may have MCAD as well, but nobody in Poland at this point can diagnose that. Her lung disease has never been seen before in a child, or a female. There is nowhere to read about a case like ours – because we are the first.

How much of what we have going on is Celiac related? I dont know. The Osteopenia for sure is, the malnourishment seen in (undiagnosed) Celiac is a direct cause of her osteopenia. Many with Ehler Danlos seem to be Celiac as well, but I can not find any research directly linking the two. The lung disease is un related to Celiac , but may be linked to the Ehler danlos. See….? This is why my hair is rapidly turning grey😉

At this point I am less interested in having a full diagnosis and more interested in trying to make Aili’s life as normal and as enjoyable as possible. We have had to many hospital stays this year already and whats the point really in going if nothing is changing by us going? Maybe at this point we need to concentrate on the big stuff (lungs) and just try to enjoy ourselves more? To heck with limitations and musts. We do what we can and what is possible.


Follow mine and Aili’s journey on my facebook page


image credit: Donna Roberts



My top 6 #Back2School items for an allergy kid!

So, Im one of those mums remember? (Eye roll as you see fit). As one of those mums back to school is a little bit harder, and a little bit more stressful. Whether you are new to the allergy / celiac game or an old timer, my list of must haves may help make your life a teeny bit easier. Aili was diagnosed as a baby, not yet 2 years old, now she is over 7, and making sure I have these allergy must haves around is totally routine.

  1. Gluten Free labels! I stick these on all our lunch box containers, these serve as a great reminder for any teacher or other adult approaching my child and hopefully reminds them to not touch my carefully prepared allergy safe meal. These are from Ladybug Labels and they ship internationally. The labels are dishwasher safe and stay on for a long time. Through the years I tried many different brands and these win hands down. The quality is superb and they are easy to peel off and stick. (http://www.ladybuglabels.com)
  2. Name labels. The last thing I need is for my kids to lose anything (they do, anyway obviously, especially my son, lol), but even worse would be their stuff getting mixed up with someone elses. All their lunch gear including cutlery has a name label. Again I tried many different ones from different companies and these are now my go to every year. Delivery is fast and cheap even for international delivery. I always get the plain label, it sticks well, peels off easily and is dishwasher safe. I still have some labels from when my son was 4 that are stuck on! He’s almost 10 now, thats value for money right there! These are from Easy2name and come in lots of different colours. (https://www.easy2name.com)
  3. Good lunch boxes! My kids bring lunch to school every day and I need something that lasts, is good value for money, and works! It needs to be able to keep my kids food hot or cold, and I need to be able to clean it easily as it goes in to a contaminated environment on a daily basis. We now use only Pottery Barn lunch boxes. The kids get to pick a new one every second September, so we have a few, the first ones we ever got are still alive and kicking (!). We use lunch boxes for every day outings as well, so even though the Pottery barn boxes aren’t exactly cheap, the fact that they are practically indestructible makes them value for money. I pop them in the washing machine regularly to clean them and so far, no problems! Pottery Barn also delivers internationally! (http://www.potterybarnkids.com)
  4. Good Thermoses! My son goes through anti cold food phases, especially in winter. Ive tried so many thermoses its unreal, many of the kids ones are actually good, but to small for my growing boy! I also found many are hard to open once the hot food is in and I prefer my kids to be able to open their own containers. Surprisingly, the best food thermoses I have found are the IKEA ones (or maybe not so surprising, it is SWEDISH after all, haha). They are a great size, easy to open, no flimsy silly seals that come off after 5 uses, and best of all, I can wash them in the dishwasher (they do say not to, but I do and so far no problems). As far as affordability goes they are amazing. The food stays nice and hot too which is obviously great as so many thermoses don’t keep their heat well. (http://www.ikea.com)


  5. Baby Wipes and hand wipes. Seriously, you cant get enough of these babies! I keep them in every school bag, in every handbag and each kid has some in school. The baby wipes are sometimes on special and you can get a box with it, cover the box in funky stickers and make it non babyish for school. Alco gel is of no use as it does not kill gluten or other allergens, allergens need to be washed / wiped off! You can get wipes in pretty much any shop. Not all wipes are gluten safe! Johnsons contain no gluten.
  6. A good freezer block. Again, I tried so many. Having had my kids in school in Dubai I may have gotten overly paranoid about the whole cooling issue, but unless you are sending a hot lunch you really do need to worry. These allergy / celiac kids are often more sensitive then others, and the last thing we want is to give our kids food poisoning. I have every size and shape imaginable, these ones are firm favourites as they are slimmer then others, come in pretty colours and stay frozen until lunch time even though they are slimmer. I got these particular ones in Jula. (Yup, another Swedish shop!) (http://www.jula.com)

Anyone want to add anything? Is there something you cant live without for sending your allergic or celiac kid to school? Id love to know🙂

If you like this list, join me on Facebook!


Riding bikes- done! Lung – done!

So we are back, a week ago actually. And guess what? Hubby did ALL the laundry while we were away so now I can do none and get away with it for probably another 2 weeks! Woohoo!

Both kids learned to ride a bike. First big brother (9), who said “its time, take my support wheels off” and later the same day went on a 3km bike ride, then the day after, zebra kid who simply couldnt stand that her big brother knew how and demanded her support wheels came off too and later that evening did it, all on her own!

This obviously is very late for a 7 and 9 year old, but for kids who were in Dubai until very recently its pretty darned good. We never rode bikes around our sandy roads in Al Waarqa….. We did however let the kids ride bikes in the majlis (formal living room), haha.

Then lungs, the stay was shorter then I expected, but they want us back in 2 months. Her eosinophil count was higher then they expected and the new meds had to be started at a higher dose then previously planned, so we have two months for the meds to do their thing, then back again for a bronchoscopy (her third). The steroid dosage she is on now will unfortunately affect her bones, so we just have to hope her bone pain doesn’t get worse again. Bone pain wise she’s been great for about 4 weeks now with hardly any complaints. I will start the daily bone broth again and continue with the vitamin D and Magnesium oil too. Fingers crossed.



Oh gosh… did I really not write since MAY? Sorry. And… ehm… not sorry.

Summer holidays started. We went to Krakow Rheumatology hospital (again). Got a few things (temporarily?) dismissed and a new diagnosis. Then we went to Crete and spent a blissful 12 days doing pretty much nothing other then chill, sunbathe and swim. Now we are back and yeah….. we go to Rabka and the lung hospital in a few days.

I try not to think about these visits to much because Im not really ready for this to be our life, although obviously it already is….

I think I have been burning the candle not just from both ends, but every angle imaginable for so long, so long now that I cant really remember a time where that candle burning thing wasn’t consuming me, for so long now that its normal and I don’t really know what it feels like to not have it (the candle burning) anymore. I mean, its a flippin inferno going on with this candle!

Then… 2 seconds after typing that I feel immense guilt, because we are the lucky ones, we are the ones, that even though we have all this crap, we have each other, we have a roof over our heads, we have a kid who battles on with stuff that is liveable, we have life, and 4, 5, 6 hospital stays a year….. there are others who have it way worse. I don’t get to have a pity party or feel sorry for myself, for us. Because we are ok.

But yeah, I didnt write since May. Because I couldnt, and I cant right now either I think, but at the same time I have to. My head right now is buried in the sand. Im playing ipad games that take my concentration so I cant think, Im watching crap on tv, Im doing everything I can not to think, because Im not ready to be alone with my own thoughts.

I am pretending everything is ok, because it is. And yet it is not.

There is no Lupus (right now). There is no Rheumathoid Arthritis (right now). There is the high ANA still, there is the lump on her finger (probably benign) there is the millions of rashes and weird things going on (MCAD?), there is the EDS, the new thing which I suspected since her Celiac diagnosis – low bone density (Osteopenia).

Still, the above is all good, its good news, it could be worse right? So why cant I think about it? Why am I paralysed on my sofa some days almost unable to move? Why have we yet again had to go buy more underwear and t shirts because I cant pull it together enough to do laundry most weeks.

The puzzle pieces are coming together and we have more and more answers, I should be happy, I should get on with whatever needs doing and face facts, none of it is new, we lived with it for years already. But I just cant allow myself to think…. let alone write.

I want to go back on holiday and stay forever and bury my head in the sand and not have to worry that soon she wont fit in the push chair. I want to keep my head in the sand and not listen to the niggling voice thats in my head asking why she’s not gaining weight again, I want to keep my head in the sand and keep it there forever and ever and just sunbathe and lie around on the beach and play UNO and not have to set the alarm clock.

I dont want to have to deal with trying her back in school again in September and living with the let down that comes when she has to be taken out again. I am hopeful….. I was hopeful, until 2 weeks before the summer holidays started she had another pneumonia. I want to be hopeful… but I have to be realistic. The realist in me is hopeful and happy and an optimist, but the realist in me knows, and the realist in me also knows that its going to hurt oh so bad if it doesn’t work. I feel like I am a hundred years old.

So I smile, I laugh, I carry on, I make no plans whatsoever and carry on and try not to think about the hospital stay thats happening in a few days. Maybe after we will go buy more new underwear.

Leaving you all with some happy holiday snaps incase I depressed you to much.



Me and Social media

So, people have been telling me for years to get instagram. And I have been telling them for years… no. Twitter, Facebook and blog is enough, remember I do my twitter and GF UAE twitter, my facebook and GF UAE facebook and both the blogs too!

Well. I was wrong, and Im admitting it. I got Instagram and I LOVE it! LOVE LOVE LOVE it! Its like twitter only its just images and nobody gets pissed off that you are posting to many images because, DOH, its Instagram!

So yeah I was wrong. (See hubby? I do admit it sometimes!)

So if you like food, puppies and other cute things, do come join me, see you there!

My Instagram!

Screen Shot 2016-06-04 at 12.03.41.png