Sometimes I just want to scream- an update on our diseases.

I am trying to process all this new information, come to terms with it, understand it…. but its hard to come to terms with things that are maybes, things that aren’t for sure.

With the Celiac process I also felt sorrow, and guilt (because mummy didn’t know) and then I read and read and read and learned whatever I could, made a support group because there wasn’t one, met others and I processed. I not only processed but I excelled in my knowledge, helped others (and still do) and it was all ok. Celiac was ok, our disease was not a lonely thing. We were “severe” symptom wise and issues wise, not those happy go merry celiacs that go out and function somewhat normally. We had issues, many of them. Now ofcourse I know most of those issues were probably not celiac at all but all the other crap that we now know about.

Trying to process a disease that I have to google every time I need to write it because I cant learn to spell it (hypereosinophilic syndrome) , trying to process a disease that she probably has but they dont want to say for sure yet because there is no damage, (lupus and rheumatoid arthritis), trying to process and understand a disease that is super rare and the only specialist that deals with it in the country we live has closed down his email and no doctors know how to get us the help we need (Ehler Danlos Syndrome). What else…? Haha, I mean, we for real have to think twice to make sure we include everything when we are told to give a medical history. The allergies and the celiac take a backseat will you, you are so minor I mostly forget! I even find that offensive myself as a celiac advocate, but it is how it is right now.

Then there is her immune system, a system that we know its faulty, but they cant figure out what part. She gets sick and her system doesn’t respond, she doesn’t fight. Her levels are ok on paper, but in reality…. not so much. They are testing and re testing, the road has already been so long, and yet there is an awfully long way to go before we actually get to someone saying a. yes, this is whats wrong with her immune system, or b. There is nothing wrong with her immune system and whats happening is a symptom of her other disease(s) that are not yet fully diagnosed. 

Meanwhile we are at home a lot. We rest. We eat. We try to live a normal life. What is normal anyway? This is normal to us, pretty much has been for years, naming the crap really doesn’t make much difference in how we live, although I must say I do feel better.

When baby girl says she has a bad day now and she’s tired, I let her stay in bed all day. A year ago I would have felt guilt, guilt that she isn’t playing outside, guilt that we never DO anything, guilt that she didn’t get enough fresh air etc etc etc. All that guilt by the way, it wasn’t my guilt, it was the guilt that society puts on you when you have a child that doesn’t look sick. If they don’t look sick they cant be, and so they must conform to a life where you do stuff every day, go out every day, dont use a puschair when you are 6 etc etc etc. Now the only guilt I have is that I pushed her when obviously on those bad days she needed to rest.

Oh, and I have guilt about her hair! Gosh, this hair that we grew and grew, and she would cry when we brushed and I thought she was just being a kid. She asked to cut it, and I didn’t say no, but I talked her in to keeping on with growing it long, every time. Now after reading and reading I realise that most EDS patients have “hair pain”, many cant stand to have their hair brushed as there is so much pain involved. Who the hell am I to try to talk her in to having it long?? I listen now. I have learned to listen with ears that aren’t tainted by our societies pre set expectations of what life should be like. I listen like a true listening expert and whats more, I hear her.

I will keep processing, I will keep on hanging in there. Check in on us on facebook (which is far easier to update then here).

Love and spoons

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Swine flu is in my town

I think swineflu is my stalker. Little madam was born prematurely during the 2009 swine flu outbreak. We kept her isolated from people and crowded places for months. I frantically learned everything I could about the darn virus, as you do when you have OCD and you are a helicopter mum. (<- I am. The gluten and allergies just gave me an excuse. Truth. Sorry, lol)

Now here we are, with a kid with a wonky immune system who has a lung disease, someone who is not allowed to be vaccinated because we don’t think she fights viruses the way she should. We are those people that aren’t allowed to get it. People say its “just a flu”, but fact remains, swineflu kills more people then “normal” flu does. It killed people in my town. Yesterday. Its here.

So. Great. Because I dont want to murder people who cough on my kid on normal days….. (being sarcastic). Now I also have to suspect them of having swine flu! Im wondering how long we can stay home. Im wondering if I should take my older child out of school, Im wondering if we can get tesco delivery for the next two months and if the tesco delivery guy is coughing on my stuff when Im not looking? Im wondering if Poland can handle a large outbreak and Im wondering if Im overreacting and Im oh so tired of always. bloody. worrying.

We are supposed to go in to hospital in 10 days. The very hospital that will look after the kids swine flu cases if there are any. They agreed to put us in isolation. Is that enough?

Breathe breathe breathe. Thats todays task. Breathing and ordering food.

Stay safe in flippin virus world!

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My top 10 tips for parents for when your kid is sick.

  1. Dont do laundry. Forget laundry. Buy new clothes, online if you have to. Only do laundry when you absolutely feel up to it or its absolutely necessary. Better yet, have someone else do it. Remember, Its not going anywhere!
  2. Have many beds. When a bed is puked on, peed on or worse (!!) in the middle of the night, don’t bother, clean the child and move beds. Deal with any disasters in the morning (although wet stuff should obviously at least be tipped off the bed).
  3. Own many sheets (see above). If you ever had to change 3 beds in the morning and expect to change them again in the day, you will know you need more then one extra set for each bed, ESPECIALLY if you are a follower of point one. Although this may be one of those “absolutely necessary” moments.
  4. Ipads, TV, phones, heck, any screen you can find. There. are. no. screen. rules. when. ones. child. is. sick. Oh yeah, thats for the mum…… you can apply this to the child also. 😉
  5. Pizza is a nutritionally adequate dinner when you need it to be. If you are gluten free and god knows what else free, you will learn to batch cook and get stuff from the freezer. Rice spaghetti with batch cooked bolognese anyone?
  6. Getting dressed is for losers. Pyjamas rules. If you MUST, then fine, wear day clothes that are presentable enough for the DHL guy (who is delivering your new clothes), but there must be no buttons or zips anywhere.
  7. Ice lollies. Get those ikea ice lolly makery things and freeze juice. Kids will LOVE these even when sick (and they will think you are a superb parent for supplying them).
  8. Keep plenty of medications on hand. Having moved back to Europe I have learned two things, pharmacies in most places don’t deliver, and they are usually closed at times when you most need medication. So unless you want to drive (in pyjamas) to the one open pharmacy at midnight thats 1 hour away, keep everything you need at home. Plus extras.
  9. Hospital runs never happen calmly. If there is even the slightest chance you may end up in one, pack in advance. Otherwise you will end up in there with uber ugly slippers (the other mums WILL laugh at you) and whatever strange stuff your husband / friend / neighbour can come up with to bring you 1-2 days later, usually stuff from the “I am donating this to the red cross box because it no longer fits me” pile. I speak from experience here. Just pack ok?
  10. Chocolate. Yes. It really IS the answer sometimes. I don’t even like chocolate so much. But sometimes. it fixes almost everything. Go ahead. Calories don’t count when your kid is sick 🙂

-Linda

 

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Glutenfree / Eggfree cupcakes

I use my own blog when I bake because I rarely save or write down recipes. Then the other day, I wanted to bake cupcakes, and I couldn’t find the recipe on the blog! HOW did I not share this with you all?

Its my base cake recipe that I tweak and change as needed and use for everything!

These cupcakes are egg free and you do not need an egg replacer 🙂 I use schär universal mix which is their corn free flour, so the end result is gluten free, egg free and corn free 🙂 You can easily do then dairy free or lactose free also 🙂

You need:

3dl gf flour
2dl sugar
2teaspoons vanilla sugar
2teaspoons baking powder
2dl water
50g butter or substitute

Mix all dry ingreds in a bowl. Melt butter, dont let it cool. Add water to butter and add the liquid to dry stuff. Whisk on high til smooth.

Put in 12 cupcake liners or in 1 large cake tin.

Bake at 225 degrees celsius for 10 minutes for cupcakes and 175 degrees celsius for 40 minutes for large cake.

I skipped the vanilla and added 2 tablespoons of coco powder. Try with cinnamon for Christmas!!

Enjoy!

We are feeling positive…

Its been a while. The last two months have been INSANE. The 2 hospital stays in 3 weeks took its toll, on me mainly I guess. There was the tightness in the shoulders, the daily headaches, the waking up at 2 am and 3 am and 5 am to google medical terms (!!), the comfort eating, the not being able to face the laundry pile or managing to do anything other then feed us and keep us somewhat clean. We have worn pyjamas, ALOT!

Stress is a killer. But in a weird way, its all ok, Ive “hit the wall’ before. Ive crashed mentally on some level after most our major hospital stays. Sometimes I just need 4 days of calm and its all ok again, other times its taken 2-3 weeks. One of the biggest ones was 3-4 years ago when after 3 months I still couldn’t “get it together” and had to seek medical help. I write this, not for attention or for you to feel sorry for me, but because I know there are other mums like me out there, and its ok! Feeling the stress, not sleeping, not being able to hang the laundry or clean the house, its all normal. We do what we have to do, we get our rest and sooner or later we will recover, and sometimes you need the help of some clever doctors to get you back on your feet too. And thats all ok! 

Im back on my feet. A few days only perhaps, but Im there. I watched 2 whole episodes of a tv show and understood what I  was watching (!!)  I did 2 loads of laundry in a day and hung them. The house is decorated for Christmas, there is dinner for today and tomorrow already made, the freezer is stocked with bone broths and bolognese for “bad days”.

Im not super mum, but I’m doing my best. Im doing ok. We are supported. We are ok.

In January I need to pick up all the strings left hanging, arrange appointments and follow ups. Im in no rush. Nothing will change because we wait another month. Its Christmas time, and we will concentrate on eating and breathing and being alive. (Not that I really need much more of the eating, LOL!)

While I haven’t posted much on the blog lately, I do update the Facebook page pretty much daily 🙂 Come join us!

 

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Having a healthy child….

When you are pregnant and people ask which sex you would like you happily answer that it doesn’t matter “as long as its healthy” you say. Because then and there, thats what you are supposed to say. It doesn’t matter if you wish for a girl or boy, the wish for health comes first.

Then fast forward a few years…… and the child, the child that was born with 5 fingers on each hand, 5 toes on each foot and an adorable heart shaped birth mark on her bum…. this absolutely perfect human being that you made. She is not healthy. Not even a little. And you know what…? It doesn’t matter even one tiny little bit. You don’t love her any less, you don’t secretly wish to return her for a refund and you wouldn’t change anything about her for the world.

You learn to live with the cards you have been dealt, you make the best of the situation you are in, learn everything you can about the diseases and issues you face, and life goes on. It goes on, and you live and you fight, and sometimes its hard, so very very hard, but its ok, because its your life, and everything you do is for your child, and it really doesn’t matter one little bit because to you she is perfect in every little way. 

Don’t feel sorry for us, don’t say oh poor you, don’t say it. Don’t say you are lucky that there is nothing wrong with your child. This health thing, its a tricky thing because it can come and go, instantly. Think instead, think for a moment, if you see me struggle, how can you maybe help…? There is so much you can do, really there is!

Spend time with us. Understand when we cancel for the 15th time. Forgive me for forgetting really simple things. Come for coffee. Ask if you can bring something – I will always say no, but its nice when you ask. Call or text, even when if I forgot to reply the last time. Send me a link to a funny or cute story, better yet, make me laugh.

Just be there, be our friend, be our equal, not someone who pities us. My child, my princess, she is perfect in every way, just like your child. Things sometimes aren’t as simple for us, just accept this. Accept us, this way, the way we are.

Things are a bit tricky for us lately. Don’t walk away, we need you now, more then ever.

(putting most our health updates on Facebook lately – go visit)

Thank you Celiac…. 

Lying in a hospital room with 4 kids and 4 mums crammed in to their childrens beds. Ive been told today that my daughter has a lung disease thats so rare our doctor – who is a lung specialist – has only seen it once before. The name is so long and complicated I dont think I will ever learn it. So tomorrow we have a CT scan to see how much damage this crap caused, and another bronchoscopy (because having had two at the age of six is totally cool) where they will also do a small biopsy.

On top of that she has a lump in her left armpit, blood test results that point towards lupus and major signs of autoimmune activity in the blood.

So the lupus isnt for sure I asked? And no, it isn’t, because lung departments dont diagnose it, but everything points to it. Great. Awesome.

We leave the day after tomorrow, have a week at home, then check in to heamatology and reumatology ward in another hospital in another town (because whoever visits the mosts hospitals before they die wins….right? Not many to go in Poland!)

So yeah. We are cool. All good.

Thank you Celiac. Really. ALOT.

My child has an invisible illness…..

Its hard to explain to people. The questions, “why is she not in school”, well, she is sick a lot, “oh, so were mine at that age”…. yes, but not like this, she is different. I don’t want to explain, just leave us alone. We didn’t take her out of school for fun or for attention.

We cant come to your house, I don’t feel safe there, I don’t know how clean it is, or what allergens are lurking. We are not allowed to go to busy places…. I don’t want to explain.

Im sorry we cancelled on you again, we are not lazy, we do want to take part but its really hard for me, for us to stick to things we planned. We need to take each day as it comes.

Im sorry I park in the spot reserved for mother and baby or pregnant ladies with my 6 year old. There are days when she cant walk very far without getting out of breath, she is too big for her push chair and I don’t have the strength to carry her so far.

Im sorry I am sometimes unreliable or wont set things in stone, Im sorry Im sometimes so tired I can hardly spell my own name or listen to you when you talk to me.

I sit and watch over my child at night, measure oxygen levels and temperatures and give medications.

Im sorry she doesn’t look sick. Im sure if she did it would be easier for you to understand. Some of the sickest people you will ever meet don’t look sick in the slightest.

So the next time you ask and I try to explain, please don’t say “oh but she looks so well!” or “oh, she looks fine to me!”. You are not her doctor, you haven’t seen her paper work. You don’t know about the bone pain that sometimes makes her cry walking down the stairs or the nausea that sometimes hits her and is so overwhelming she has to lie down straight away. Or the breathing issues or the tiredness that comes from fighting. I know. I know. She has an invisible illness.

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Crazy about Dahl

I have a thing about dahl lately. My kids have a thing about dahl lately too! Sons thing is eating 2-3 bowls of it in one sitting, and daughters thing is refusing to eat any at all. Ho hum, you cant win them all.

Did you know you can make kick ass awesome dahl without having a cupboard full of fancy spices?

Let me teach you my base dahl, then you can play around with it and create your own version.

You will need: (No measurements, sorry, I suck, I know!)

  • Lentils
  • 1 onion
  • 3 garlic cloves
  • tumeric
  • fresh ginger
  • 1-2 tomatoes
  • 1 lemon or lime
  • chilli – optional

for different variations you can add spinnach, chickpeas, paprika, different coloured lentils, carrots…. the sky is the limit 🙂

So, you need lentils. For a starter outer I suggest red lentils. Wash them well and pop them in a large saucepan with water. Id say 2 cups of lentils and 4 of water, add more water if needed. Add about half a teaspoon of tumeric. Bring to a boil and turn the heat down. Red lentils are pretty fast so you can start prepping your other stuff almost straight away.

Finely chop your onion, if you have a kid who thinks onion is poisonous like me, then you can puree the onion in a mini chopper. Its magic. I do this all the time and point blank lie. Works a treat.

Mince your garlic (one of them garlic press majiggys is perfect).

Slice or chop a small amount of chilli, I use red for more colour but use such a minute amount it really doesn’t give much spice at all.  Add the chilli to your garlic pile.

Grate or slice some fresh ginger. I always keep mine in the freezer, so its easy to scrape off the amount I need with a sharp knife. Add the ginger to your garlic and chilli pile.

Cube your tomato. Some say to take the peel off, I dont bother.

Once your lentils are close to done then continue with these final steps.

Add your oil of choice to a frying pan, I use extra virgin olive oil, over low to medium heat fry the onions taking care to not burn them or let them go brown. You want them soft. This will take about 4 minutes. Then add your garlic, chilli, ginger pile. Take extra care now to not let this burn, burnt garlic is not nice.

Once your lentils are done, add all your goodness from your frying pan in to the lentils and also add your tomato. Add salt and squeeze half a lemon or lime in to your dahl.

I like to add a few leaves of baby spinach, it gives such awesome colour.

Once you graduate from this dahl you can start using more grownup lentils and spices if you like 🙂 The one pictured has baby spinach and the lentils are brown and red mix. YUM!

I serve mine with a naughty blob of butter 🙂 You can make it less liquidy and eat it with rice too.

Swedish Coconut Balls!

Yes, I know, this recipe starts out with you doing a double take and going, “coconut balls?????”

All Swedish kids grew up with coconut balls, its not something parents generally make, instead the kids do it, its an activity and a sweet treat all in one. Although in Swedish, kokos bollar doesnt sound so, eeehm…. wrong? lol

Once upon a time some people called this something else that is very very racist, those people are now being told to say chocolate balls instead. Im not sure what all the hu haa is about to begin with, I have always said coconut balls as have most my friends and family. So coconut balls is what you will call them as well 🙂

This recipe will not work if you cant tolerate oats. Make sure you buy proper glutenfree oats and not any old oats, as normal oats can contain a fair amount of gluten.

You will need:

  • 100g butter, room temperature
  • 1.5 dl sugar
  • 3 tablespoons coco powder
  • 1 teaspoon vanilla sugar (scrap this if you dont have it)
  • 2 tablespoons strong coffee (or water if you dont want to risk making the kids hyper)
  • 5 dl GF oats
  • desiccated coconut, for rolling the balls

The rest is really very simple. Add all the ingredients in a bowl and get your kids to mix it.

Really really mix it, squish, sqash, knead, bash….. until its all mixed. Then roll the mix in to small balls which you then roll in coconut. Once done, refrigerate. Then eat. Or eat as you make it. With a spoon. Then you can skip the coconut too 😛

For a healthier version play around with it, add some coconut oil, chia seeds, less sugar etc. The possibilities are endless.

Enjoy!