Just wanted to say an enormous THANK YOU to everyone who has commented and acted on my post about my friend Marie and Pulmonary Haemosiderosis. You have given us some brilliant ideas and definitely some hope. I will be passing all this on to my fab friend, as well as researching a lot more myself.

Sorry I’ve not replied to your comments of the last few days and returned the love yet. I really do appreciate them and I will get there in the end. My little brother’s wedding is on Friday, hooray, so I have a guest coming to stay, a house to clean and two little bridesmaids to calm and cuddle. We then have an After-Wedding dinner at my mum’s on Saturday, a BBQ Saturday night at Miss E’s friend’s, and Miss E and two of her friends are having a joint birthday party on Sunday.

Fun, but fraught.

In the mean time I just wanted to give you all this;

The thing is, if we hadn’t stopped him he’d probably have forced it down, even though it was obvious his tastebuds were on the verge of revolt.

So what disgusting unusual sandwich fillings do you all like? Come on, make me have to use this…

About 2 and a half years ago my friend got ill. She was breathless and coughing up blood. Pregnant at the time, it was put down to rupturing of small blood vessels in the lungs due to the strain of pregnancy, but she didn’t get better.

Earlier this year Marie became so ill she was hospitalised. After having had numerous courses 0f strong antibiotics over the winter due to what they had finally diagnosed as pneumonia, her immune system was weak. They did test upon test and had suspicions that Marie may have Pulmonary Haemosiderosis, but it was difficult to be certain.

When Marie could not breath, was in pain and coughing up blood constantly it was confirmed. She was given blood transfusions, filled with steroids and on morphine and constant oxygen and we were scared. When I visited her she looked frighteningly ill, but she smiled, chatted, and joked as she always does. She was a 32 year old woman on a lung patient ward and all the other patients were generations older, but she made the best of it and made some friends. When her two little boys, C (now 4) and F(now one) visited with their Daddy it cheered the whole ward up, but I have to admit it was hard to see her there.

It turned out that this time Marie did have pneumonia on top of the Pulmonary Haemosiderosis, and they later informed her that if she had not come in at that time it is likely she would have bled to death. When she was leaving and asked if she could take oxygen home they said no, but only because if she needed oxygen again she needed to be in hospital. Her x-ray showed her lungs were full of blood and if she’d not responded as she did to treatment there was nothing else they could have offered.

It sounds mad doesn’t it? But Pulmonary Haemosiderosis is very rare, especially in adults and its causes are not known. Apparently one person is diagnosed every three years in the UK. When Marie contacted the British Lung Foundation to find out if there were any support groups, the lady she spoke to, who had worked there about 22 years, had never come across it. She vowed to find out more for Marie and has been lovely but it seems a huge task. When you do a google search on this illness it comes up with 8,800 hits. That is it. When you start reading through them, even the first, the best matches, yield little information.

One doctor describes it as;

‘…a devastating condition. Characteristic of this condition is the accumulation of protein-bound iron in the lungs, a consequence of repeated bleeding in the lungs, coupled with inflammation and fibrosis. Ultimately this condition is usually fatal.”

Scary isn’t it?

Marie has responded fairly well and they are slowly lowering her steroids, but her pain level has not decreased since March. She takes morphine and many other strong pain killers but she is still constantly in agony and at times can barely move about, torture for a young mum of two small children. Her consultant, who declared early on she was ’such an interesting case he keeps her file on his desk’, has been fantastic, but he cannot tell her much as there aren’t a million case studies on this disease. The one possible course of treatment is going well, but steroids themselves are damaging and as for the pain, all he can say is ‘wait and see’. The lungs have been damaged so much that it will take time for them to heal themselves but he is confident they will improve.

So why am I telling you all this?

Well one thing that would really help Marie would be to be in touch with other sufferers. We know there must be more people throughout the world who have this condition but we are at a loss as to how to find them. It would be good to know if others have received different treatment, or responded well to alternative therapies, dietary changes, exercise. It would be good to know she’s not alone.

So, if you know of anyone who has this illness please get in touch, and if you have a minute to do a quick appeal on your blog, “Do you know anyone who has Pulmonary Haemosiderosis?”, we would be so grateful.
I know it’s a long shot, but this is the worldwide web so maybe if I can get this out worldwide somebody somewhere will respond positively, know of a support group, know someone who knows someone who has it.

It’s worth a try right?

Miss M: “Will you hold this for me Mummy?”

I glance at Miss M. She is holding something tiny and invisible in her hand.

Me: “Erm, Ok M, what is it?”

Miss M: “Shhhhhhhh. You’ll wake him up.”

She gently places the little piece of imaginary something into my open palm then closes my fingers over it.

Me: (whispering.) Oh, Ok, who is it? Is it a little doggy?”

She looks at me in disgust.

Miss M: “No Mummy. It’s baby Jesus.”

Me: “Oh, snort.”

She studies me critically for a moment, then comes to a decision.

Miss M: “He’s asleep. I’ll put him on here.”

And she gingerly takes him from my hand and places him on top of the fireplace.

Me: “Are you sure he’ll be ok there M? He might fall off.”

Miss M looks at me, then the mantlepiece then she shrugs then leaves the room.

So I sit for a while reading my book, or attempting to read my book, but every few seconds my eyes are drawn to the wooden fire surround and a little voice in my head is saying, ‘You should really move him, he might fall.’ Finally I give in to my urges, walk over and carefully pick him up. I imagine him small and nestled in my hand like a sleeping gerbil, only less hairy, wrapped in swaddling clothes and with a tiny halo and an accusatory expression.

It’s just an accident waiting to happen right?

At the same time Miss M walks back into the room.

Miss M: “Oh Mummy, you woke him up. Tsk. Come on baby Jesus, let’s get out of here sweetheart.”

And with that she snatches the tiny nothing from my hand and flounces from the room, her face all taut eyebrows and pursed lips. Blimey that kid can do drama.

Me: “Sorry M. Erm, sorry Jesus.”

There is a moment of silence, then her head peeps back around the door.

Miss M: “It’s BABY Jesus.”

Bugger. Now I’m definitely going to hell.

I think my brain has been infested by slug. Or it could be the 3 hours spent at Playland with Miss M’s friends after Nursery or the hour and a half at MacDonalds with Miss E’s friends after school because they broke up for the summer today…but it’s probably the slug.

Maybe I have caught some strange and terrible disease from it where my feet will turn inside out and I will only be able to write on a Tuesday after conversing with goldfish about sporrans.

Or

maybe it was the Port Mr B brought home last night that we drank fairly quickly and that I had thought I had managed to escape unharmed from…

It’s a long time since I have been giggly drunk but I was giggly drunk last night. I was at the PC and suddenly the page before me blurred and I knew I could no longer read as my mind was slurred. I know it’s normally speech that gets slurred, but I swear my whole brain was slurred, it was very weird.

It was fun though as it was the kind of drunk where you call each other by your full names in mock posh accents and say things like:

Me: “Do you love me?”

Mr B: “Yes oh drunken one.”

Me: “How much.”

Mr B: “Twenty-five.”

Me: “That’s good. And would you love me if I was a rabbit?”

Mr B: “Yes, though maybe not in quite the same way.”

Me: “And if I was a vampire rabbit?”

Mr B: “No dear. I could not love a vampire rabbit. It would be wrong.”

Me: “I’m not a vampire rabbit.”

Mr B: “Good.”

Me: “I’m a vampire goat.”

Mr B: “I knew it.”

Sighhhhh.

Silly is good.

It’s funny how you can be down one day and then up the next.

Not funny like a monkey doing a little dance then running off with some rich blokes sandwiches is funny…

And not funny like Vic Reeves or Tommy Cooper or Stephen Fry or Eddie Izzard is/are funny…

And not funny like a small badger playing a mandolin and charging 50p a turn for passing millipedes to peep up his trouser leg is funny.

But, well, funny.

Ok, it’s not funny, but you know what I mean.

And you would think, after the horror that touched my life this afternoon at around 2.30pm as I was doing the dishes, that I would be in no state to contemplate the joys of life and all its colourful little nuances, but sometimes it takes such an event for a person to count their blessings right?

Cough.

So, I’m washing the dishes. There’s only a couple as Miss E is spending the day with Granny and Miss M and I have had a scone each for lunch cooked by the fair hands of cousins ME and baby J. So that’s just 7 items. Two plates, a butter knife, a sharp knife for the cheese, a teaspoon, a mug and a Minnie Mouse beaker. I half fill the wash bowl, being an Environmentally Friendly Blogger (even though I forgot all about the Blog Carnival of Rubbish happening at my fabulous friend 21st Century Mummy/Almost-Mrs-Average’s blog this week, even though she reminded me, bad Jo.) and wash a way about five crumbs, a bit of stray cheese and a few dregs of tea and Orange & Barley.

That’s not a lot right? I mean, the water was barely grimy, yet as I emptied the bowl and waited for it to drain nothing happened. It stood still, a slightly grubby, mostly liquid, warm pool of bubbly water surrounding my green washbowl like a tiny moat.

Hmmm, there must be something blocking the plug I think, so I reach in and my hand meets something squishy. It’s not exactly pleasant to touch, but I continue to tug at this piece of slimy detritus as in the end, what’s it going to be? A piece of soggy broccoli stalk? A gooey tube of pasta? A mouldering grape?

Oh if only.

As I finally get to grips with the slippery obstruction and raise my foam adorned hand to eye level, I realise that my feelings of apprehension were not unwarranted. For what should have been a piece of yucky yet tolerable soggy food product, is in fact…

..this

Noooooooooooooooooooooooooooo, they are back.

This is why they have their own category. Go, click, you will understand, shiver.

NB. I do not wear these lovely Marigolds for washing up, I dare to bare, but for picking up dead things, the gloves ALWAYS go on. (You’re a bit scared now aren’t you.)

SO, why the good mood?

Well I may have my ups and downs but let’s face it, never, never ever, never ever ever will I be pulled moist and oozing from the dank plughole of a 33 year old mother of two, and flung unceremoniously into a bin accompanied by the sound of shrieks and retching and a 3 year old shouting, “What is it Mummy, what is it?

That will not happen to me.

Ever.

So I am lucky.

I am also lucky because of this lovely write up which put the biggest smile on my face as it was such a fabulous surprise. Thanks so much Ian and thanks for the comment. There are so many fantastic blogs out there so it’s really nice you like mine.

Thanks for all the lovely comments yesterday everybody. I am full of warm squidginess and feeling loads better. Just a quickie post tonight as I plan to sleep the sleep of the very sleepy person who has had some sleep sandwiches and is now off to bed. So I will leave you with a little run down of Miss E and Miss M’s latest activities, namely Sports Day and a little encore for Miss E.

Miss M’s first Sports Day starts off with the ‘walking along the bench while attempting to keep your halo straight’ game. Of course Miss M manages admirably, snort.

Next came the welly toss. Unfortunately Miss M is not much of a welly tosser, so she uses the power of her mind to egg the welly on just a few more inches.

It does not work.

Then it’s the obstacle race where Miss M is like ‘a rat up a drain pipe’ as one parent pointed out. Sighhh. I am so proud.

And finally a fast finish on a scooter twice her size.

As the sporting activities draw to a close, Miss M ponders whether there is much point to this sports day malarkey where everyone gets a certificate and it’s the taking part that counts rather than the winning…

If she’s anything like her mummy was the answer will be yes.

Oh, and Miss E’s Oliver Performance was fabulous and I’m sooo proud of her. This was the final encore on their last show.

E is second from the left staring at something on the ceiling that seems to have caught her eye but still singing her heart out. The show was unbelievable considering no member of the cast was older than 11. It’s been a really good experience for E and has done so much for her confidence, and the talent there was amazing.

So I have two tired monkeys today. It’s a blumming good job the support staff were on strike as we all needed a lie in. Miss M actually stayed in bed till 7.30am. I am amazed and drugged by the extra sleep.

Night night.

As some of you will know I stopped working as a Special Educational Needs Teaching Assistant in 2006 due to depression. I won’t say that I had a break down, it didn’t quite get that far, but I stopped being able to function as I had been doing. My mask didn’t just slip, it fell to the floor and shattered into a million tiny pieces.

In so many ways this was a good thing, even though at the time it was pretty bad, but something had to give and in the end it was me. I lost myself and I needed to be fully ‘gone’ before I could get me back I suppose.

Now 2 years on, several stones heavier (boo) and several pounds poorer being a one job family, I am also a million times happier, a million times more hopeful and a million times richer in so many ways and my blog has been a huge part of this.

While I still struggle with depression I find myself able to escape its desperate weight more quickly, but I am very much aware that I suffer more easily with stress, which is what has been happening these last few months. On good days I am fabulous, happy, smiley, energetic and ready to take on the world, or at least a bouncy almost eight year old and feisty and fun three year old. But on my bad days I feel drugged, lethargic, exhausted and can literally sleep all day, while at night my brain will not switch off or plagues me with weird dreams and panic.

Over the last few weeks I’ve been really suffering with the weird sleep thing. Seriously, at times, like last night, I go to bed when Miss M does and sleep right through and am still tired the next day. I’m also losing a lot of hair which after numerous tests seems to be down to stress rather than physical reasons.

So why am I telling you this apart from to be a big old whingy pants?

Well I suppose because I’m visiting you all a lot less at the moment and I feel bad. It’s playing on my mind. I love to read, I love to keep up, I’m a gossip and a people watcher and I love being part of this fabulous community we have, but right now I am frankly, well, knackered.

So please bear with me and don’t give up on me. You’re all in my reader and I will catch up and I’m so grateful that you still come and see me. I made a promise to myself that I would blog everyday and I’m sticking with that come hell or high water, but occasionally I’m having an evening off to catch up on the sleep I am missing at the moment and to get myself well. I’m learning to listen to my body a little more and I know I’ll get there in the end.

Ok, serious bit over. Now for a little bit of silliness.

Miss M: “Mummy, have you got a gubby bum.”

Me: “Erm, I don’t know babe, do you mean a chubby bum??”

Miss M: “No. My want a gubby bum like E. I’m a big girl and big girls can have gubby bums.”

I look round helplessly at Miss E and Mr B.

I get nothing.

Me: “Erm, I don’t know what you mean M. You’ve got a perfect little bottom for a Miss M.”

Miss M looks at me in disgust.

Miss M: “Not a bottom Mummy. My don’t want a bottom to eat, my want a gubby bum to blow bubbles like E.”

Me: “Ahhhhhh, bubble gum.”

And no I didn’t let her have any. She’s far too young it would be unfair on the house, the car and anyone within an inch or her.

Fun Monday today comes from the wild and wonderous IamwhoIam at Dungarees Ablaze (Hope those adjectives are ok. :D)

She says;

“..lets hear about your favorite “Birthday”, it needn’t be your actual birthday just a birthday celebration. You can use one you planned, one you attended, one you crashed, just a fun time for this FUN MONDAY’S assignment, and of course you can use one of your very own Birthdays.”

Oooooh, I love this topic, you see I adore birthdays. I’m one of those kind of cheesy people who still gets excited about their birthday even though I am 33 and should probably know better. Picking a favourite birthday is a toughie though.

In the past two years we have celebrated both my parents 60th birthdays which were brilliant as we had family weekends at Center Parcs and having enjoyed it so much that we’ve turned it into a family tradition, in that we’re going again next year and plan to do it every year.

My favourite birthday celebration though??

Could it be my 17th which was the first year I had a boyfriend on my birthday so I got presents from a cute boy and felt all special and grown up?

Or maybe my dad’s 40th when his mates arranged for some of the local football team to come along for a drink and a chat??

Or was it my sister’s 8th birthday, when she decided to be wonderwoman and cut her head open during a dramatic spin just before the party began?? (Why was this good? Well, you see, little 6 year old me got to greet all her guests and play with the big kids while she got to sit in Casualty for a few hours waiting for her head to be steri-stripped. Bad Jo.)

Or maybe my recent blogaversary which was kind of special. ;D

Sighhh, so many happy memories.

But you know, I think my best birthday was my 30th.

Some of you are thinking that’s weird right? But my 30th was early February 2005, and I gave birth to a tiny Miss M in late January 2005, so while many of my friends spent the weeks up to and including their 30th mourning the supposed demise of their youth, I spent mine cocooned by family and friends in that first mad rush of new-babyhood. I cared not about my wibbly bits, I mean, come on, I’d just had a kid. I did not need to drown my sorrows as I was so happy with my new little girl. I could have had a drink as Miss M’s attempts at breast feeding were epic fail due to an ‘immature valve’, but I did not need alcohol to raise my spirits as I was already high on her sweet baby smell, her tiny toes, how my 4 year old Miss E gently stroked her sister’s cheek and how Mr B stared in awe at his new baby.

30 passed by gently, a background milestone, barely acknowledged. Whether or not 40 will be as easy I’m not so sure but I have another 7 years to get used to the idea of that one, and who knows, I might not have any wobbly bits by then… Snort.

Now, you’ll find more birthday tales to delight and disturb here. Have a fabulous Monday, and if it’s your birthday then have a good ‘un.