Hi, hello!! (Ostrich no more)

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I really wasn’t sure what to put as a headline/subject? How do you say hello again to social media, life, your blog after spending months as a recluse?

Let me give you all a little tip (or a few actually).

If you have a hysterectomy, don’t think you can be batman or someone of equal power and strength and move country 4 weeks later. Also, if you’ve been on medication for your mental health for years, don’t quit that medication 7 days before said hysterectomy.

Dont move country, by yourself, with two kids and a dog who you cant even lift because you’ve just had surgery… dont move to a house thats cold and empty and have your furniture on a boat following a month later. Dont throw yourself in to everything without any regard for yourself and your own well being, because chances are you wont do so good…… chances are you will need months to get back on track.

And so, here I am.

I did all of the above, I learnt that I am more fragile then I admitted to myself, I realised that I’m an idiot (!! HAHA) and that just because you always land with your feet down eventually doesn’t mean you should put yourself through hell again to get there. I learnt that there is enough stress and crap in my life without me adding extra, and that there actually is a limit to how much stress somebody can handle…..

So. Thats that ok? Im not there anymore, Im forwards from there. Zebra kid has been sick properly and didn’t go to hospital, it happened and I didn’t have a nervous breakdown so I guess we are good. I realise that what P the counsellor in Poland told me about stressing about the stress that hasn’t even arrived yet is a very real thing for me. I was so scared about how I would feel when she got sick for that first time that it actually consumed me. She got sick. I stressed. We found a dr. We managed….. it was all ok in the end! 

I am happy. I am happy with where I am, the kids are happy, we are settled and life is good. I realise also, that I have a lot of guilt about not enjoying it “as much as I should” and not feeling “grateful enough”. Very real emotions that Im putting on myself, nobody else, just me! I set my own bar so bloody high sometimes, all I really can do is fail.

I am not superwoman, or batman, or supermum or even close. The bar doesn’t have to be set at roast dinner with 3 vegetables for dinner, Ive moved it down to cereal for dinner and finally somehow, Im winning a bit (and we haven’t actually had cereal for dinner even twice!).

Im getting my crap together, maybe more because I lowered the bar than because I am better?

I made myself a to do list on Monday morning to make sure I actually accomplished stuff this week. It had 7 things on it, 2 of those things rather major, the sort of stuff I stress about. Well, its Wednesday and the list is complete. And there was NO need to stress. I actually took one thing off the list, because Im being kind to myself and lowering the bar, another thing sorted itself out, and the other I just got on with and did. And not only that, but we had good healthy dinners every day! See, with a lower bar its so much easier to win.

I will fill you all in on everything else one day, but Im in no rush. These things can take time, and its ok. If I dont look after me, nobody else will get looked after.

 

xx

Ostrich.

My head is stuck firmly in the sand. Deep deep in the sand. Everything is so freaking GREAT and I dont WANT to go to the dr, I dont want to start the next step.

We need a pulmonologist to help guide us to lower the dosage of steroids and check her nitric oxide levels.

We need a gastro to help guide us and investigate why she stopped growing again – is it only due to steroids or does she need extra feeding / growth hormones wtf??!!

We need an allergist because holy shit her allergic reactions are getting worse and shes due new testing.

We need a physio who can work with her on her back and help her build muscle safely.

We need an orthopedic doctor to take a look at her spine to see if she needs braces or if physio is enough.

We need a rheumatologist to check her over as she was due a repeat “look over” a few months back.

I AM FUCKING TIRED AND I CANT THINK ABOUT IT ALL RIGHT NOW!

Everything is so great, so WHY??!!!!!!

Head back in sand. Look at the pretty flowers…..

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Welcome to all the newbies (prologue)

So many new “likees” and hits from all over the world. I realise while looking at my blog its an absolute mess. Its trying to be an informative celiac blog, a place for gluten free recipes, something that spreads celiac awareness, and then *laugh snort* life fecking happened! And this little celiac awareness blog website thing went and got totally and utterly side tracked by a ton of other things thats arent very celiac related at all, so now its much more (a mess basically), and I cant really change it because its our life and this is how it happened (guess you just had to be there to understand lol).

So if you can put up with a bit of a mess there is actually some good celiac info hidden in here, info on lunches and letters for school and basics for your kitchen. If you are lost you can use the search box which is in some corner… somewhere… hehe. There is also plenty of Zebra stuff (Zebras will get this!) and spoonie stuff. Anyway, welcome, and thanks for reading 🙂

Linda

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Your evil can not touch me, Im choosing to not be hurt.

People can be so insensitive to others and rude cant they? I don’t know how people can be so absolutely void of compassion? I had a run in the other day with a woman in our school, (well actually, I was standing perfectly still minding my own business, she was the one running) she couldn’t understand WHY we have to include people with special dietary needs in school events. She was actually screaming at me, “WHY do we have to do this”, “WHY do we have to provide food for these people”.

These people of course being us. These people being my 2 kids within earshot. These people being a ten your old boy who couldn’t sleep that night because he couldn’t understand why anybody would say something like that. Mummy he said, if we wanted to eat nuts, and G wanted to come, then we just wouldn’t eat nuts because its ok to wait and eat them when she’s not there, her being safe is more important! (heck, we don’t even keep nuts in our home because we have friends who have nut issues)

All I could do was hug him, because how do you explain that some people think they are more important than someone elses well being? How do you explain that even though the hotel thats hosting the event is well aware and capable of providing safe food for all, sometimes the people organising, think its to much hard work to even request it from them…?

At the time of all this shouting, I was just shocked and stunned that somebody would say crap like that to my face, let alone in front of my children (and other peoples children). Now I am hurt and angry. Will I address it? Hell no.

And let me explain why….

There are people who dont understand through just not knowing, who have never had to deal with someone with an allergy or autoimmune disease, there are people who ask questions and try to help, who want to get it right. These people can learn, many want to learn, and most are open to! Others arent interested but do understand that you cant exclude people based on diet (or religion) so they just do what is asked of them. Then there are people like this one. A lost cause for sure. Whatever anger she is directing at me and my children and others like us is obviously not about us, but about her. Whatever hostility she has against us is obviously a hostility – not from fear of the unknown – but deeply rooted from something else. At least I have to believe this, because how the hell can she hate someone just because they cant eat the same food as everybody else?

Its not easy being different and idiots are everywhere, but I had somehow hoped to not have my 7 and 10 year old exposed to people this hostile, so soon (and for sure not in their own school). My son has not mentioned it again now, but I know its on his mind and I know more questions will follow. How hurt must he be on the inside? I don’t even know how – as a parent – I am supposed to fix this. All I can do is love them as much as I can and hope that all that love wins over everything else.

Seems vegetarians and anyone with special dietary request for religious reasons were also in this woman’s firing line. So very UN PC.

Being Un pc is ok. But live and let live and dont come shouting your crappy evil opinions at me in school where kids can hear you! One of those kids a teenager about to be tested for celiac and food allergies. How the hell must this teen now feel?

Life is hard enough without evil people being evil to your face! 

All I can do is try to remain the positive being that I try so very hard to be. Block out negativity and surround myself with light and love.

Will I forgive? No, because she is not worthy of my reaction – at all. So I am going to choose to not be hurt, to not be angry. My life, its too important to have people like her in it. Her hostility, her venom, her toxicity, it will not touch me. Speak to the hand, I will not listen. Your evil can not touch me. And so we move on, and we teach those who want to be taught, and we protect those we can protect and we just do our very best, today and tomorrow and every day.

Moving on……..

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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!

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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 AM NOT FAT!

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…..

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Summer

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.