Category Archives: Health

Those spoons

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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.

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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

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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.

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  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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Having a healthy child….

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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)

My child has an invisible illness…..

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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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Then September came…..

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September. The month when school starts, the mad rush to get clothes ready books labelled, running around, signing up for activities and….. for us….. pneumonia.

You know that Facebook looking back in time thingy..? In September mine has been filled with memories of Septembers gone, pneumonias. Lots of them with accompanying hospital stays. Hospital stays in Dubai and here in Poland.

So school started, big brother started school. Big brother got a cold. Little sister got a cold, and before we knew it, the pneumonia was a fact. Low oxygen levels, not super low, but low enough….. We did it at home with a supportive dr. and a mummy who knows her stuff. God Im tired.

Hubby is here. We have requested oxygen at home. Its September, a pneumonia already…. we are in for a long winter. Like every winter. Enough is enough. Let us treat her at home.

A year or so ago a dr. mentioned briefly to me that we may be prime candidates for oxygen at home, my thoughts then, NO, WE ARE NOT THAT FAMILY. My thoughts now….? WE ARE THAT FAMILY, GIVE US THE FUCKING OXYGEN!!

I kept her at home this time, through oxygen levels that should have been treated. But how can we put her in hospital every bloody time when they cant keep her safe there? When she cant eat there and when she is exposed to a gazillion germs? When she is so so frightened and agitated. When it puts all our lives on hold and makes everything so so much worse.

Its ok, we will be that family that has oxygen in the home, I really don’t care or mind, we are that family. Just give us the oxygen, please!

This is when I start telling you all how tired I am, but thats like a theme that runs through the entire blog, so let me leave it out this time.

I will say though – before anyone jumps on me – that kiddo was safe. Should be treated yes, but safe. I was in touch with a dr. the entire time and I have monitors at home. Just need the actual oxygen. No jumping please.

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Oh sheesh, just read through and I mentioned tired, twice. See how tired I am? lol 😛

Welcome to the family celiac genes, we are not pleased to have you!!

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I have been quiet lately. I have my reasons. Those of you following the Facebook page will know why….

I have been UBER busy coming to terms with the reality of celiac genetics. The reality is, that me and my son, both have the genes. Yes, genes! We both have BOTH the celiac genes. Congratulations to us.

Its funny how after 4 years of joking with my celiac buddies that I am probably a “closet celiac’, and 2 of my favourite doctors agreeing its safe to assume I am celiac too, now that I have this paper, I am in TOTAL denial. And I mean total. I haven’t eaten gluten for over 4 years, but now that I have this result, all I want to do is run out and eat gluten…!

After over 4 years of being pretty sure that I have the gene (and not doing the test because I wasn’t emotionally ready – read chicken) I am now in total shock and denial. I keep re checking the paper to see if its really true, if I really have the bloody gene, I read it and re read it, and I keep laughing (rather hysterically mind) because this is us, and of course I have the gene!

(Did you watch Friends? The episode where Chandler and Monica are in bed and they are talking about who the father of the baby they are about to adopt may be, and Chandler says, this is us, ofcourse its the ax murderer. Well thats a bit like me and my family, and a constant joke between me and hubby.)

I keep saying to myself that fine, its just a gene, and obviously I don’t have celiac. Obviously right??? Never mind the bone pain, the migraines, the fact that until I cut gluten I was the skinniest girl in the world and that Ive had stomach issues pretty much my entire life…… All of a sudden in my head all this… – not gluten related at all! (Im in denial, didn’t I tell you?)

Never mind the fact that we just spent 11 days in Greece and that I ate gluten free but not contamination free and a week after getting back my tummy is still in absolute bits and I can hardly move its hurting so bad. Stress you know…. (told you I was in denial).

For my son, we stuffed him with as much gluten as we possibly could during holiday and did another celiac profile. His profile that was done at the same time as the genetic test was negative…. Im not sure why… the previous was inconclusive. I know he has a rash that is gluten connected and he himself says he feels confused and forgetful at times (when eating gluten) – could it be he is describing brain fog?

Clever 8 year old that he is though we have talked to him about the options, and he wants a positive test before cutting gluten, just so he can know for sure and be careful. I hope the next profile is positive so we can just be done with it, if not I will speak to our celiac professor and see if they can do a biopsy on him. If he had no symptoms I would just keep doing the profiles I guess, but there are symptoms, mild, but still symptoms. Some may argue we should just cut it and be done with it, but without a diagnosis I fear he will not be strict and continue to eat gluten at parties and play dates. This is not an option if he has celiac, so I do feel in his case its important to pursue a complete diagnosis. He agrees, and not because I talked him in to it. we listed his options and he picked “knowing for sure” and having a biopsy if needed. I am so so proud of him. SUPER proud.

For those of you who have no idea what Im talking about, heres the deal. There are two genes connected to celiac, one of them is pretty common and the other rare. You can have one or both genes and never ever develop celiac disease. However, if you do have one (or both) of the genes, its important to remember celiac can develop at any time – statistically its more likely that it wont though.

Usually a genetic test is used to rule out celiac, it is not used to diagnose, as it only tells you if you have the genes necessary to develop celiac, not if you actually have the disease. A positive celiac blood test (which looks for antibodies to gluten) and a positive biopsy of the small intestine is still the go to method for a celiac diagnosis. 

In other cases, the genetic profile may be done to gather information when you cant do the celiac profile, like my case. I am not eating gluten, so the celiac blood test would show a negative. You need to be eating gluten for a celiac blood test to be accurate. 6-8 weeks of daily gluten, minimum! Going back on gluten is usually called a gluten challenge or a gluten force. 

In some countries they say to test first degree relatives for celiac every 1-2 years, others say if there are symptoms only. Of course, if you have a negative genetic result, further testing would be unnecessary. I wish more countries would make genetic testing easier to get. Here in Poland its relatively cheap and we just walk in to a private lab and request it. 

Ho hum, so thats us all up to date. This closet celiac is still in the closet and now also in denial. I cant do a gluten challenge as it would make me to ill.

I also dragged hubby to the lab and had him do the genetic profile, he already has his DH diagnosis and a positive blood result under his belt, but he too is in denial, for a long time now, haha, what can you do.

I guess the name for the blog, Gluten Free & ME, is just so much more fitting now.

-Linda

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Germs, school rooms and dreaming of a farm!

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Not feeling very “bloggy” lately. I can honestly saw we are all exhausted.

End of May, I finally went to the hospital and handed all our papers in. So many hospitals working together on our case. I just wasnt ready to hand it in sooner. It looks like they will still want us to go to Warsaw to check something there. We have the unexplained signs of autoimmune activity and bla bla bla. Bla bla bla may seem a bit blasé, but I just cant manage more then that right now. Im tired of “it” constantly being what our life revolves around. Waiting now to see how often we need to re test her igg’s also.

On a very positive note, she has not had pneumonia since she was taken out of school. TOUCH WOOD (as she sits downstairs with a big wheeze and a cold). She even had the same 48 hour cold / virus that here brother had a few weeks back, and hers ALSO lasted 48 hours. I almost cried with relief. I had no idea her immune system knew how to do that!!

The doctors are hopeful that this break is all that we need, but lets see, only time will tell.

On the school front, we have our plan, and our back up plan. She will have tutoring in school 3 times per week without germy other kids around. Hopefully she will still be ok with this once flu season starts, if not we will have to take her out fully. Im ok with all of this, I have gone over the plan in my head a million times!

New house is looking fab, and thanks to my Pinterest research, our school room eats other peoples school rooms for breakfast! We LOVE the school room, its probably our favourite room! A couple of more things to do, then its all ready.

We had Celiac kiddos birthday party just a few days after moving in, and it was fab! I thought the preparations would send me in to a stress fit, but it really wasn’t so bad! Guess Im becoming a pro at catering to people the gluten free way. Even the corn free and egg free is getting a tad easier, although I do miss being able to buy bread!

Our biggest enemy lately is not gluten anyway, its those pesky germs that everyone carries around, the stuff that lives in peoples noses, the stuff that little kids sneeze out and cough out and touch and then attack celiac kiddo with. Ok, fine, nobody is attacking, but sometimes it really feels like it. Its SO hard keeping her safe without going overboard.

I go to the supermarket early in the mornings now when its not so busy, that way she wont need a mask, more times then one Ive changed checkout after seeing a snotty cashier sneeze / cough in her hand and then carry on moving peoples groceries to bags. I don’t even want to start thinking about the stuff we don’t see!

Im telling you, the only safe way to live is in a house in the country, where you grow and raise your own food! It used to be a sort of joke I told, but I am more and more serious about it as time goes by! haha (any excuse to wear wellies full time really).

So, thats us! 3 more days of school, then maybe, hopefully, we can all re gain some energy! Which might mean more blog posts. Lucky you 😉

-Linda

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The image is of a big scary germ. Obviously. Just incase you didn’t get it 😛

Including the different child

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Time and time again here in Poland I see the food allergy kids being forgotten. They sit on the sideline watching their friends eat cake or whatever it is thats been brought to school / nursery. It makes me so incredibly sad.

In Sweden there are rules against this, schools (and nurseries) have to follow government guidelines, this means there are strict food policies and also inclusion policies. No child is to be treated different. Basically, it means, that if there is cake in class, suitable cake must be provided for ALL of the children. If this somehow fails there is a report system in place with a chain of command that you make your complaint to and there will be an investigation.

In Dubai we were lucky to have an amazingly supportive school and a food policy that suited us. There were no laws backing us up, but caring adults and a large dose of common sense, meaning a small child should be included in a school environment, not excluded. No matter what the child says, it is not ok to have a kid sit and watch friends eat. School – in my opinion – should be for learning, and once you start teaching kids that its ok to exclude another child based on their allergies, religious beliefs, autoimmune diseases, then you are going down a very very wrong path.

We teach our children to respect others, to not point at the morbidly obese, not to laugh at others misfortune, to be caring and nurturing individuals, but how then, does it make sense to have a child in a class room or lunch room going without? It goes against everything we are teaching them, and if you ask the young children themselves, it upsets them too. Most would rather have a toy or a treat that everyone can eat. It isn’t that hard really. And if it feels to difficult, then simply ban foods that exclude from a school environment. It is the right thing to do.

I haven’t had enough fight in me in the past few months to deal with this. But the fight needs to go on. The sad thing is…. it shouldn’t have to be a fight at all 😦

Please do share this post, not for me, but for all the children it affects.

-Linda