Those spoons

I read the spoon theory back in October, it was such an eye opener and it made so much sense. It described our girl exactly and it made me feel like the rest days were REST days instead of lazy days. My husband read it also, and he was like BINGO! We now have a language in which to speak in in terms of illness! When he calls and asks about our day I dont have to go in to long explanations, I can just say, “she ran out of spoons and she’s resting”. It makes perfect sense to him, and to other spoonies around us.

Our family is a true spoonie family and we have been for years, we just didnt know it yet! Knowing now that we need to pace and save spoons has made our lives alot easier. Ofcourse Aili has no idea what Im talking about when I ask her if she ran out of spoons, she also has no idea why we have a big picture of spoons on the wall. If you are confused by my references to spoons you need to read the spoon theory too 🙂

The Spoon Theory by Christine Miserandino

(Just realised my kids must think Im a lunatic, spoons and zebras, mummy clearly lost it!)

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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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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)

Bone Broth vs Stock

I see a gazillion people out there asking about the difference between broth and stock, and another gazillion who think its the same thing. It is, and yet its absolutely not.

See, they both do the same thing in terms of taste and flavour, but thats where the similarities end.

A stock and a broth start out the same way, but where as you would finish off a stock just a few short hours later, the broth keeps going for a day or even two to get all the valuable nutrients out of the bone and in to the broth. Stock is great to flavour soups and sauces, broth can be used in the same way, but oh my goodness (pun intended) the nutrient value is just oh so much better.

Can you buy broth? Not really unless you find a stall that sells it, most broth you find in a supermarket etc is actually stock. I used to make all my own stock anyway, so taking that extra step to make broth was not a big deal at all. The only adjustment I made was investing in a slow cooker, Im just not comfortable leaving stuff on the stove while I sleep or when I leave the house. A slow cooker is a safer option (in my head at least).

There are probably as many versions of stock / broth recipes out there as there are personalities, but here is my version!

In to a large pot or slow cooker, put:

  • 1 good quality chicken, organic if you can get it, if not, at the very least get free range.
  • 2 small onions, no need to chop, just slice in half
  • 3 carrots, if organic, don’t bother peeling, just wash and pop the whole thing in (if not organic, peel and trim the top and bottom off).
  • 3 stalks of celery, if organic, pop in as is, if not , trim top and bottom off.
  • 1 parsnip. Im not a huge fan of parsnip, so I add only one, you can add two, but be aware if you add 3 the broth will taste of parsnip.
  • 3-4 garlic cloves (optional). No need to even peel, just plop them in the pot.
  • a good amount of good quality salt, I use himalayan pink salt, use whatever you usually use, if you are a “normal table salt” user, take some time to investigate the health benefits of a good quality salt. You will thank me for it. I promise.
  • Black pepper, yum. It needs it, add a good amount.
  • Add enough water to cover your chicken.

NOTE: You are supposed to add 2 tablespoons of apple cider vinegar to help the bones release their nutrients, I don’t always bother doing this with chicken, but for other bone broths you should absolutely do this and let the bones sit in the cold water with the vinegar and bits in for about 30 minutes before turning on the heat.

Set your slow cooker on high, or if in a large pot on stove, bring to a boil. If your chicken is good quality there shouldn’t be much scummy stuff to remove, but look out for it and spoon off as needed (Scummy stuff looks like dirty dishwater, browny bubbly stuff, its the impurities leaving the chicken). Once this is done you can lower the heat if its a pot on the stove, leave a slow cooker on high.

Slow cooker version:

After about 4 hours, remove the chicken from the pot and take the meat off. Add all the bones and bits back to the pot. At this point I also like to taste test and add more salt and pepper if needed. Lower slow cooker temp to low. Add more water as needed. Then give your broth another 12-24 hours. Keep an eye on it and add more water as needed. Once done, strain the bits out and discard (I use a rice strainer for this). If you want to remove the fat you can let it cool in fridge and then remove the fatty top layer. I leave mine in and freeze in small portions.

Stove top version:

After about 1-2 hours, remove your chicken from the pot and take the meat off. Add all the bones and bits back to the pot. At this point I also like to taste test and add more salt and pepper if needed. Make sure your broth is at a very gentle simmer, on my cooker lvl 2-3 is perfect. Add more water as needed. Give your broth another 12-24 hours. Keep an eye on it and add more water as needed. If you need to go out for say 2-3 hours, you can turn the heat off and turn it back on once you return. If you sleep with the cooker going, make sure you add water before bed, and please be careful.

Once your broth is done, strain the bits out and discard (I use a rice strainer for this). If you want to remove the fat you can let it cool in fridge and then remove the fatty top layer. I leave mine in and freeze in small portions.

For stock:

Boil for 2-3 hours only after removing the meat. This is insanely good still, its just not broth.

How to use it:

Regardless of if its stock or broth you made, you can use it the same way. I add it to anything I can think of! I use it to boil my quinoa and millet, I use it to make sauces and obviously soups. I also drink it in a cup in the evenings, and its actually delicious! Add a spoon of tumeric for even more health benefits.

Variations:

Use beef, pork or lamb bones (pre roast for yummy flavour). Boil these for 24-48 hours. After discarding the bits you can save the bones and use them for a second batch!

Add herbs, ginger, and other flavourings.

Always use good quality bones, you don’t want the hormone fed on antibiotics standing in the dark animal bones, you want the happy kind, from animals who roam free and eat grass the way nature intended.

Happy brothing!

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I added tomatoes in the one above to see how it would affect the flavour, pretty nice 🙂

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On a pancake mission – day 1

Gluten free was easy. Gluten free pancakes taste amazing and I have yet to meet someone who doesn’t love them (they are better then gluten ones, trust me!). But then you go almost completely lactose free and egg free and you sort of sit and wonder, if pancakes are lactose free, egg free and gluten free, are they still pancakes?

Well, after almost a year of being pancake less I decided to go on a pancake mission.

Pancake 1

This is a combination of several recipes I found online, the base recipe(s) had more milk and fancy flavours, they also had gluten. So, this is what I did.

  • 1 ripe banana
  • 1,1/2 dl gf flour (I used a cake one rather then a bread one, but whichever should be fine)
  • 3dl milk (lactose free or whatever tickles your fancy)
  • 1tsp baking powder
  • a pinch of salt
  • a squirt of evoo (or melted butter is fine if that works for you), a bit in the batter and some more for frying

Mash the banana in a bowl and add other ingredients, whisk well so its not to lumpy. Fry as you would a “normal’ pancake.

Verdict: Well, there is one thing in the world I will not eat or try ever, and its banana. I apparently didn’t like it even as a baby. My mum forced me to eat one in childhood at some point and I promptly puked. I cant even stand the smell. So, I almost died having to mash the thing. Honest. But almost dying is worth it for my kids, so mash I did, with my head turned away and running to the hallway for breathing breaks. I cant tell you what it tastes like. But Celiac kid ate almost all of them! She was screaming and jumping up and down from being so happy about pancakes, she says they are the best everrrrrr! I guess thats a pretty good verdict 🙂 From a cooking point of view Id say they burn pretty easily, I had to keep the temp lower then “normal” pancakes. They were also a bit runny, so a bit bigger then what we usually make, but maybe more flour would have fixed this. Anyhow, daughter gives these a 5/5. I wont rate them as I didnt try, and big brother is in school so missed out on these.

Pancake number 2 tomorrow!

-Linda

EDIT TO ADD: I managed to save 1 little pancake which big brother ate cold after school, he gave it a 6/5 and drew me a “best pancake maker in the world” certificate. I think we are on to a winner!

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Yesterday my heart broke a little……

We were sitting in school Celiac kid and me, waiting to pick up big brother. All of a sudden I realised she wont be back there, not just for ages, but ever. The school is building a new building, and if/when she does go back, it wont be there.

Its very different sitting in school knowing you can send her back any time you like because you took her out, just for a bit, to sitting in school knowing she cant go back for a year or 2 because the dr. said so. Even though its what my mummy heart has wanted and thought about for some time, the fact that we now have it on paper just seems so final.

The lumps in my throat got all big and horrible and for a horrible moment I thought I might cry. I didn’t. Thankfully, lucky none of my closer mum friends were there, because if one of them had asked how I was doing the floodgates would have opened.

Im ok, its for the best, and I know that. But there is still this huge sadness inside that soon A’s class wont be her class anymore, it will just be the class that she should have been in if she attended school. As new kids come and go, “her class” wont even know who she is anymore.

Onwards and upwards now with positivity. I am mourning but I should be celebrating, because we may be looking at a year or two with no pneumonias, and maybe even no hospital stays? Thats got to be a good thing, right? A year or two with mummy all to her self, a year or two of doing whatever she wants (within limits obviously). A year or two of me not stressing every time the phone rings (incase its school calling to tell me to come get her quick). A year or two with one on one teaching and learning!!

Bring it on, Im ready (or am I?…)

-Linda

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An unwilling homeschooler

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

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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Does fun = Junk?

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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