Immunology update

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I forgot to blog about our most recent hospital stay. I did facebook and tweet about it, but not blog. I do that a lot recently, while I really want to document our journey I also find it hard to write, partly because Im so mentally drained, and partly because writing about it makes it so god darned real.

Im a happy kind of guy (ok, lady), I joke and smile and laugh, thats how I get through life, and that stuff that I feel deep inside, it comes out when I write. So when I don’t write…. its because Im not really ready to let it out.

Well, we went to the hospital, zebra blanket, food, toy box etc all in tow. We got admitted for our 36 hour stay and had all the immunology panels re done.

I still have to wait for the subclasses to come back, but the main classes are in, Her E is up almost to 1500 now (should be below 90), still not high enough for a hyper igE syndrome diagnosis but if it keeps going like this it will be eventually. IgE is allergic reaction, and while her numbers are off the chart there are no allergic symptoms. Her M is up (GREAT!) and so is her A and G, the G is particularly great news as it was very low before and its mid range now. If thats all greek to you then lets just say that all those numbers are representing different parts of the immune system. So while before she was borderline deficient in most, now her numbers are looking better, however, as the igE is so high we are still immunology patients. We were hoping to be signed out of immunology, but nope. First we need to see what the subclasses say (letter should come in a few days), then we must repeat all the tests again in 6-12 months. With the igE the way it is we may very well be immunology patients for life. So, immunology, rheumy and lung. Its ok. Im feeling very positive.

Having said all that, being in hospital was a great experience for me this time, we were in a room dedicated to patients doing infusions for CVID and similar. One young girl came in, around 14-15, she did the whole thing on her own! They arrived at 9, the nurses were there supporting but she infused by herself, she stuck herself, infused, and removed once done. She and her mum left by 12. Not sure if her next monthly infusion will be in her home or not, but I was as proud of her as if she was my own child. How amazing. And we CAN live with these things. Its not so bad! Me and her mum, we needed no language. She saw our Zebra blanket and A’s mask and we were instantly in this club together and her smile told me just how much she was there, really there with me.

All in all, immunology, yup, we are still there, but its ok 🙂 In June we go back to Rheumy, then in July back to Lung. Then – DRUMROLL – In September, kiddo tries to go back to school! Keyword here, tries ….

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Preparing for Hospital stays

Ive done this so many times, yet almost every time its about to happen again I fill with so much sadness. Going to hospital sucks, no matter if its planned or emergency. But there are some things that help make our lives a teeny tiny bit easier.

I hope you never need any of these tips, but just incase you do, here are my essentials for any hospital stay.

If you are a family that sometimes needs to go to hospital as an emergency case, know it, accept it, embrace it and be prepared.

I have graduated from “bag always packed” to a storage crate with “hospital things” where I can quickly grab what I need depending on the situation (emergency / planned) and go. This also makes it easier for family and friends to find things that I may need brought to me as the things live in the box. In Dubai hospitals provide so much, in Poland hardly anything, but our needs as a family have been almost the same in both places either way.

-In Dubai we have often been lucky enough to have our own fridge in the hospital room, every gluten free families dream! In those that don’t supply a fridge however there is usually a patient fridge you can use. Sometimes there is even a kettle and some coffee making facilities. What ALL hospitals with a shared fridge have in common is that they want the patients name on any items they store there, usually anything without a name will get tossed away. So there you are trying to label your milk / cheese / juice at 3 am with a non working biro. Not me. Anymore. We have a hospital box now. Its just a small plastic container that is large enough to hold our butter, cheese, a small milk box and a few other bits. Its labelled with our girls name and lots of funky gluten free stickers. Not only is it clear it is ours, the box also protects our stuff from contamination. You can always spot a fellow chronic illness family by their boxes. Nobody uses a box for just a few stays…..

-A special hospital activity box. I saw another mum with this and was immediately super sure we would add this to our repertoire. I bought Ikeas smallest storage box and got the clips to keep it secure. Its small, but still large enough to fit things to keep us entertained for a few days. Currently our box holds colouring pens and crayons, a small blank book for drawing, a small colouring book. A stack of cards, Uno, some dice. A small Sylvanian family family, a beading set and some toy brochures. Our last hospital stay we had great fun decorating the box with stickers that I had brought along. I have spare stuff in our school room to swap stuff around with. The sylvanian family was bought especially for the hospital box so doesn’t get played with at other times, makes them special. Before the Sylvanian family it was a littlest petshop thingy with accessories. Its not so hard to find small things to put in the box, and whatever space it takes will be absolutely worth it.

-Toiletries bag. Yeah, so many times I would just franticly throw a few things in a bag, ultimately need more and buy it in the overpriced hospital shop or get hubby to bring stuff, usually the wrong stuff and he always without fail brought it in some supermarket plastic bag. We have toiletry bags we use for holidays and nights away obviously, but I bit the bullet and invested in a hospital one, large enough for me and kiddo to share, and always packed and sitting in the Hospital crate. Actually it was some freebie bag so I didn’t even pay for it. It has hand cream (you always, without fail need hand cream when you are in hospital, trust me on this one), toothbrushes, toothpaste, travel pack sized shampoos, soap, deodorant, a hairbrush and some hair ties as well as hair clips, and some sanitary towels. With the toiletries bag always packed I know I am covered. Almost everything is labelled btw. Because when your kid is sick and your brain melted 3 days ago, you tend to leave stuff lying around.

-Slippers or flipflops. Really. If you are in Poland some babcia or nurse will kill you if you have no slippers, and anyway, you don’t want to be walking around gucky hospital floors without. In Poland they will tell you off if you use your outdoor shoes indoors too. Just don’t argue with me (or them), bring slippers. (A small hint here, on day 3 or so of being in hospital your spirits will be a bit squished and you will feel crappy and horrible and you will miss your own bed, this is when your red IKEA Christmas slippers that you bought for 9zl in a sale will start to bother you because the other mums are all far more stylish and have way nicer slippers. Get nice slippers just for hospital stays, ones that scream that you are a fashionista and that will boost your flaying morale when its dipping. Not ones that make you feel like a total loser – trust me. I know.) Don’t forget slippers for the patient too!

-A small pillow and blanket, Make it a nice pillow, one that is usually in your kids bed, something that smells of home, and yet something that is comfy enough for you (mum or dad) to sleep on if need be. The blanket is to hide the hideousness that is hospital bed covers, and also again, for you incase you need it. Not all hospitals provide a bed for parents, and if they do, getting bedding is not always an option (or they give you the scratchiest blanket the world has ever seen). Having our own stuff has always been super comforting for both of us, again well worth whatever space it takes.

-If in Poland – Towels. We have been in I think 6 different Polish hospitals, only one provided towels and they were not very nice (there was more thread then actual toweling material). So in our hospital crate now lives a gorgeous pink ballerina towel for little madam, and a bath towel for me plus a small hand towel.

-Clothes, For you and your child. In Poland hospitals don’t provide gowns even for the sickest patients, so bring everything you may need. Keep in mind your child will probably receive an IV line soon after arriving so you don’t want long tight fitting sleeves, go for short sleeve things that are easy to take on and off. For you, lots of comfy t shirts and hoodies and soft pants. As long as your slippers look good you are ok, and you can use the hoodie to hide your hair. 😛

-Plastic bags. Seriously. They will give you stuff, your child will collect stuff, stickers and bears and small toys, you will need it for clothes that are dirty or have had accidents in. Just bring a few, if you can, hand dirty clothes to your spouse to take home when they visit.

-Charger pouch. Really, just do it. I have a small pouch with charging cables ready to go, you don’t want to be without your phone or iPad even for a second. I have a multi charger, so 3 cables can go in one adapter. Best thing I ever bought.

-A trolley case. A duffel bag may be all very well and good, but you may need to walk far with it if parking is bad, and in an emergency you may be carrying your child as well as the bag. Whatever bag you choose, make sure it fits everything on your list, and that it has wheels! We have a red bag that we only use for hospitals.

-Food. Snacks. Drinks. If in Dubai – ignore, just call room service 😉 In Poland however, you wont even get a bottle of water or a juice, you will need to bring all your own drinks and also snacks. For allergy peeps, bring your own food also. (Don’t forget coffee and tea and a cup and cutlery!)

With all that said we prepare for our next stay in hospital next week. Im heartbroken, but I know at least having all that we need will make it all a little bit easier.

 

5 years gluten free!

We have been gluten free for 5 years this week. 5 whole years! I remember it like it was yesterday. We were called in to the clinic, it was a Saturday morning, they had some results they said. Aili had been in and out of hospital, I was drained, mentally and physically. My life revolved around my screaming baby and lots of vomit.

We went in, the clinic was busy, lots of screaming kids, everyone was rushed. All the staff knew me by then, by voice, by name, by daughters name. We were ushered in to see the dr between two others who had appointments, it was rushed, no examination, papers handed over. I had been hoping it was lactose, but it wasn’t, it was gluten and my whole world was spinning.

We walked out, papers in hand. Gluten cant be in to many things right..? My son was hungry, my baby girl was hungry, we were in a mall and the mall was spinning. I let out a small sob. My drained self couldn’t cope. That small sob was it. My husband rolled his eyes and told me not to cry again, our life was a mess.

I never cried about gluten again. I cried many times since obviously, but not about gluten in particular.

We went to mc Donald’s. Son had a burger, Aili had some fries. No gluten in fries right…? We went home. We went home and nothing was the same again…..

It was good different though, not bad different, because the vomiting….? It stopped that day. Our girls life was saved that day. It continued to be saved every day since.

I look back at that day now, and I feel sorry for the exhausted mum that I was, and I wish I could have given that mum a hug and told her it will all be ok, that its only hard at first, and that life will get better now. I wish I could hold that mum and tell her to cry it all out, get it over and done with – the crying. I wish I could go back and smile at that mum and encourage her, because back then, going gluten free seemed like such a huge huge task, keeping my baby girl safe seemed so impossible.

I was so tired from months of illness and hospital and clinic visits that any task – no matter how small- would have seemed impossible that day.

We did it, of course. I did back then what I still to this day do with all the new stuff. I learned everything I needed to learn, I got on with it, I looked forwards and upwards and onwards and I remained as positive as I possibly could, and I have, almost every day since. Even in my darkest deepest moments of despair, I am still a very glass half full kind of girl.

Gluten now, 5 years later seems like such a minor thing compared to all the things we are facing today. Sure, its hard still, but its second nature, I have done it for so long it no longer bothers me. 

If you are that mum that I was that day, today, tomorrow, yesterday… please know this. It gets easier. Really. It really really does.

Happy 5 years to us!

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Dont forget to join me and my family on Facebook! 🙂

 

Not going to “normal school”

Im so tired of all the “knowitalls” and having to defend our daughter not going to school. Its like they think we are keeping her home willy nilly for FUN just because we feel like it.

“She wont thank you for it”, “She needs to be with her friends or she will be socially awkward”, “its not good for them to be home”. The worst ones are the swedes (no offence meant, remember, I am a Swede), because homeschooling is not legal in Sweden they all seem to think of it as something worse then witchcraft and I am obviously damaging my child by not letting her go to school. What the doctors say doesn’t matter. Clearly.

Strange how as an adult its ok to not work and to be long term ill or signed off as disabled, but a child must go to school or you are ruining them for life. I have two words for them all. FUCK OFF. You know nothing. You don’t know us, you don’t know the struggles we face or have faced, you don’t know that your child’s sniffle could mean a lengthy hospital stay for us. You don’t know the amount of thinking, anguish and tears that have gone in to this decision, a decision which was finally taken away from us when the doctors put their foot down and said NO MORE!

We, as a family are having to come to terms with our daughter, our child, possibly never being able to attend what you call “normal” schooling. Nothing you say is news to us. We have taken it all in to consideration. We know how damaging it may be, we know. We have also done our research and we also know that most homeschooled kids are well adjusted awesome human beings. A high school teacher friend of mine said she has never met a previously homeschooled kid who was socially awkward or not up to speed academically.

We are not hippies who don’t believe in education. We are not weirdos who think the system is faulty. We are not deeply religious people who pray all day (maybe we should – perhaps it would help!). We don’t feel the need to carry a sign signed by our doctors (our team of doctors I may add) saying “She is to ILL for school”. We don’t owe you or the world anything. The minute you say you homeschool every Tom, Dick and Harry (and their cousins uncles neighbour) has to have an opinion? I mean seriously? GO AWAY!

Our 6 year old is a well adjusted, friendly, polite, non awkward life and soul of any party. We do not need your advice. Thank you.

Phew. Needed that vent.

And I said the F word. Bite me.

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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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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)

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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