A rare 'thing'

Thank you for comments.

Well B had her punch bioposy, internal stitches plus  more steristrips on outside. Then a pressure bandage with a dressing on top. 

They used a type of tape to keep the pressure bandage in place which is not suitable for anyone with thin skin issues.  I had to remove the tape which caused bruising and cuts.  I thought in the old days the community nurse would have come and changed dressing but these days one relies on mothers.  It made me wonder what people do who live alone.

She bled and bled as us EDSer's are prone to do.  The pressure bandage hurt.

She was brave.

Try telling a 19 year old, she is not allowed a bath for two weeks.

A photographer took photo's of the 'rash' but she only let him take them of the large area on her back.  I totally understood.  Nothing in his demeanor made her feel comfortable.  

I think there is more but my brain is not working.

We waited patiently for results.  She has had to keep returning at set intervals for extra blood tests and repeats of previous.

She thank god, does not have cancer, leukemia and they think not lupus, although the latter can be problematical to diagnose as it hides.  Dermatologists can diagnose many things via the skin.  But it seems not my daughter.

She remains a medical mystery.  They are to have a team meeting to discuss her.  The bioposy showed massive inflammation and necrosis.  Which we are told is rare.  The necrosis was a surprise to them as it is deep.  They say.

They thought she had 'something' with the most incredibly long name.  All things dermatological have incredibly long Latin names.  But it was not that they don't think.  Apparently tests can sometimes be negative when positive.

So we wait. 

She is very tired. Very.

Her EDS pain is severe.

Relatives are pleased now it seems with the outcome.

For them I think that chapter is closed.

For us I feel its just beginning.

The dermatologist is kind.  I felt she would rather have had a diagnosis because this wasn't your normal type of rash.  It had them worried.

We see them again in a month.

B is vulnerable at the moment.  We are endeavouring to surround her with love and support.

The crisis time has passed for the moment.

So once again we seem to have a 'rare' thing.

Except this rare thing has no name.

Me - perhaps I will write about in another post....

worry

Well I am not commenting anywhere today - too busy having a good old worry frankly.

Daughter with shingles turns out not to have that.

Urgent referral to Dermatologist Consultant who at appointment called in Senior Consultant.

Now tomorrow morning she is to have urgent skin biopsy.  Not the scrape kind, the horrible kind that requires stitches.  With EDS, stitches and local anasthetics may be problematical.  I am worried on lots of levels - will they believe her if the anasthetic doesn't work - I don't want them to accuse her of hysteria.  (This is a hangover from something that happened to me - note to self - do not pass on own neurosis to one's children, only apparently connective tissue disorders).  They say they know all about EDS, I must therefore have faith that they do.

They are also to take lots of photo's for their journals.

I am not a doctor. Could it be elastosis perforans serpignosa.  I am in a way hoping it is this because its not as hectic as it sounds.

All the other things they are getting concernced about are very hectic indeed.  So I am writing in my blog and I hope not coming across as neurotic in an endeavour to try and stop worrying.  She is having more and more blood drawn by the hour which is leaving her extremely bruised and the phlebotomist seemed to have no knowledge of EDS or she would have used a thin pediatric needle to avoid the pain and bruising.

If it isnt EPS and its something she doesn't want me to mention I will honour that and just post to say it wasn't EPS.  But in the meantime if you could send some healing whatsits over the wibbly wobbly web (don't worry commenting that you are just if you could spare a thought for her that would be nice) as she is most unwell and I am trying hard not to let on that I am worried.

The type of worried that is of the sort when one's child (despite her over 18 status) is ill and medical people are shaking heads and getting all serious.

I am sure Ivy's mum at @mythreeringcircus will have been through this type of 'worry' -

thesaurus entry mentions some of these words - in relation to 'worry'

anguish apprehension, care, concern, disquiet, distress, doubt, fear, torment, uncertainty, uneasiness, vexation and woe.

Take your pick - on some level or other I have most of these mixed up amongst my worry.

   

The walls are closing in......

Having spent the last hour emptying my reader of blogs I must read.  I wonder if I should in fact try to blog myself before I meander around the blogging world.

It takes me a while to decide to add another blog to my reader. Will it upset the balance, the harmony I ask myself.  Generally I have to start at the beginning and absorb a blog thats new to me in its entirety before hitting the follow button.   

Often I open my blog and have absolutely not a thought in my head as to what I am about to write.  So reading other blogs  & subseqeunt colloquy in comments, helps jump start my idle brain.  Perhaps in time blogging will be suggested along with sudoko, crosswords & other brain food exercises as an effective passtime to ward off the dreaded short term memory problems associated with old age. I think there are more sophisticated methods available which involve electronic hand held devices which I am afraid are a complete mystery to me. 

 Don't get me wrong, I am not a  plagiarist, I find absorbing the plethora of language, ideas & links to information I would not otherwise be privy to, empowering.  Seeing that others who have blogged much longer than I, are bold & willingly discuss a myriad of emotions, some raw and ragged, some so brutally honest, seems to give me permission to let my fingers do the talking, tapping my thoughts quietly on the keyboard and realising I can do it to.

I'd like to shake some bloggers hands, to thank them.  (This would have to be done very gently indeed as my hands are particularly prone to dislocation so it is not a weakness of character that means my handshake is somewhat limp). My virtual handshake I think is better.  Imagine this, you reach out and find a reassuring clasp, not clammy at all, the perfect temperature, conveying better than any words could my exact intent.  To thank, with respect, not the handshake of a collagen deficient, genetically challenged zebra at all.

This morning I had an EDS fallout - I have spoken of this previously and experiencing pain that is intolerable within moments of waking, negates the sleep. It means that the sleep which is supposed to refresh & renew is not restorative.  Some with EDS are prescribed low dose amitriptyline, an old fashioned anti-depressant which prescribed in low doses for those with chronic pain may make sleep restorative.  Well not me, without meaning to sound embittered, I am one of those people who cannot tolerate this medication.  Its efficacy is nought when the side effect of raging palpitations and more mean its a little dangerous for me.  (I have also tried as an alternative dothiepin which has pretty much the same effect)    I am intolerant for a myriad of reasons to many medications, if there is a side effect to be had on the list of rare or occassionally 1 in 2000 people may get x,y,z as a by product of a drug.  I am that 1 in 20000. I deliberately don't read the blurb of side effects included in the box in case its an auto suggestive response!  My gp prescribes with trepidation any new med on a very very low dose and we ensure I am not left alone!  Anyway I digress.....

Due to multiple dislocations in sleep and the subsequent agony on waking,  is probably why I am awake now, afraid to sleep, perhaps because it is better to stay awake than wake in utter mind blowing agony.

Enough of all that though, its time I think I talked about the weather....

The snow in the picture is 20cm deep.

Its making me a tad annoyed now -

Because... it is affecting people I care about. 

(See my blog list)  BG from blog - benefitscroungingscum   -  Alice from i'm confused

the pig man - our friend - because free range pigs need x gallons of water a day and he is having to do all this by hand.  He is exhausted.  His wife is worried for his health.

To our neighbour who has just come out of hospital and had to be brought home by army services which was a very uncomfortable experience for him.

My husband, whose 4x4 has become a local multi purpose vehicle - a free social service. This means he is also very tired.  Being a good samaritan is tiring. He is literally running around like a madman, people need people right now to get 'stuff' they cannot get. From dawn til' dusk he is towing, shoveling snow and carrying heavy buckets of stream water to animals, owners cannot get to. He reckons its a good job his muscles are strong (particularly core stablising ones) as they are doing the job of holding him together.

There is more but my guess is you get my drift.

Oh and me to be honest.  Much as I love my husband, apart from him and the children (if you are a regular reader you will know they are not by definition children anymore but they do still live in my house)  are the only people I have had a conversation with.  So if my blogging is getting a little peculiar, please bear with me.  The walls are closing in.

As a child growing up in the country, snow was a time for long walks, frozen toes in

proper green wellies, none of this crap

   

In my day, socks were socks, pj's just that, duvet covers etc....  I was a mean mother and would not have anything to do with any of this.  If my children refused to wear anything but Disneyfied logo'd clothes, just as an example nightwear then I would have given them a lecture regardless of their youth and innocence on the downfall of society because of the commercialisation of clothes.  That the only people that benefited were bla bla bla bla.... and they were the victim.  I probably emotionally scarred them for life depriving them of branded clothes because of a principle.

Anyway back on subject... wellies - I am cross because I need wellies to get from the front door to the car and having size one and half feet am finding it nigh on impossible to find a pair that haven't got a logo on which means I must be a fan of a cartoons by default.  Being 45 now I would just look stupid in these.  I do quite like the cheerful ones with flowers on though but must simply look on in envy at the trendy forty something wearing these.  BUT my stupid feet are too small for grown up trendy wellies.  (edited to add I think I have found some child wellies that are ok online!)

Bearing in mind I cannot venture out alone in these conditions without the strong arm of other half bearing my weight as I cannot walk on ice, my unstable ankles, my knees, my hips ....... cannot find any centre of gravity for balance and I am a liability.  I am sure my husband didn't sign up for this.  A cripple for a wife.  So in my minds eye, the reason I cannot venture out is a conscious fashion decision, I will not be seen dead in stupid wellies.  So there.  (I did have wellies, green ones, but they were in the shed and now they are not, I think a neighbours child borrowed them some time ago, moved and now no doubt they have been passed on.

So moving on all I really want to do is climb to the top of Telegraph Hill with my sledge and scream with glee on the downward run, exhiliration topping up my serotonim levels.   Perhaps one day I will have the funds to have one of these   -  I WANT the Extreme X8 !!!

 

In other posts I have written about my denial (along with family members) regarding wheelchair use.  Given my spouse's man love of Top Gear,

I reckon he would probably rate the ExtremeX8.

So after a long and rambling post.  I leave today with fond memories of childhood winter walks fresh in my mind.   More words spring to mind.....   freedom, mobility, carefree, nature, fresh deer tracks in the snow, sucking icicles imagining lollies made with fresh crushed strawberries.  Jack Frost really did exist.   Laughter.....

Pulling myself together I look forward to


                                                                        snowdrops

                                                                            daffodils

                                                                         spring rain....

                                     







 

Chilly......

We don't get snow here very often!  It was very dull when this photo was taken, the air thick with snow that was about to fall abundantly from a heavily laden sky.  Son took dog for walk and took the photo - just moments away from home.

  I wanted to go but spouse mentioned the fact that knees that dislocate walking across the front room should probably not venture out today.  I was gutted.  It doesn't seem that long ago although I think my mind probably deceives me when I loved nothing better than dog walking hereabouts in the Sussex downs.  I can't go out in my car as my tiny automatic is not suited to these conditions.  Husbands 4x4 can (necessary for his work as a professional gardener we do not gas guzzle because of wealth). As consolation prize for non walking he took me out for a drive and also to stock up on gas canisters as we are prone to blackouts and without my ovaltine I am one very grumpy female.  The heated seat on full, I sat aghast at those who feel its ok to venture in conditions in cars that are simply not equiped for snow.  Don't get me wrong if any of these were essential usage, they must take their chances but to the boy who from the look of him passed his test last week came gleefully toward us on sheet ice whilst on his mobile phone, I do have words suitable for him most of them expletives. 

I enjoyed my foray out but was glad to return to warm fire and crumpets.  EDS joints do not like the cold at all and I am simply not thinking about the heating bill which will shortly land on our doormat.  I do pay a monthly sum by direct debit but in order that my entire housekeeping is not taken up with this bill the dd is not sufficient to cover the entire bill.  Last year the extra went into £100.00's  (quite a few of them) but husband with a short memory cannot abide for me to be cold and despite my protestations and middle aged mutterings about last years bill, he remains adamant that I am not cold.  The fire does take off the edge and we make good use of fallen trees collected over time.  However for the moment despite adding as many layers as possible the heating is on more than the planet and the bank balance can accomodate.

So despite the fact that the snow is beautiful as long as you are a child, making snowmen, stealing carrots for noses, sledging and gleefully throwing snowballs.  The UK is not really suited to this type of weather.  In part because it happens rarely, the last time it was as snowy as this in 1981 there were the normal complaints -  why does the country come to a standstill, well really it is due to money.  There is little point in keeping an army of snowploughs and all associated gubbins fully functioning and in storage for the odd occasion that it should snow like this.

I know its not good for the economy but I don't mind when the shops can't open - we have the type of store cupboard that can accomodate snowy times.  I do feel sorry for the elderly who struggle with the heating bills and those who need carers round the clock.  There have been some truly heart warming stories of carers who have struggled miles in desparate conditions to the disabled with MS and other disabling conditions.  These carers really do earn the minimum wage and I find it interesting that it is always these people who make the most effort to make sure others don't suffer.  I don't feel sorry for the bankers who have been forced to 'work' from home no doubt only venturing out in their unnecessary Range Rovers to pop to Waitrose to stock up on wine, lest they may run out.

Anyway, to anyone who is feeling chilly or islolated in this cold snap, I hope the blogging community is helping in a virtual kind of way to keep you warm in both body & soul.

Trite but True.....

 Happy New Year 

Trite but true.... to those who have taken the time to read this blog and/or comment I would just like to say you being here has meant more to me that I can express right now appropriately as back to one eye shut blogging!

Before I go I'd just like to say THANK YOU.

AND

Please accept the most sincere of wishes

that

2010

is the best one yet.

Bramble

Well my house looks as those Santa popped down the chimney and ransacked the place.  Enough said - I am sure you get the picture.

On the picture front hopefully soon I will be able to add some.  My lovely lovely son bought me a digital camera.  Very generous as he is only 17 and he worked hard to provide me with such a thoughtful gift.  It is supposed to be easy to use, nothing fancy but I am struggling with flash shots.  So more practice needed.  Hands not being what they were I have attached the strap thingy.  I loaded some up on the pc and was devastated that everyone was in the dark.  So auto does not seem the way forward.  To Kim @frogpondsrock and Veronica @somedaywewillsleep and the rest who provide fantastic photography, I can practically feel you cringing at my struggles with a simple digital camera.  Nothing fancy you understand.  I will persevere though and show you my endevours when I feel brave enough.

So on the present front I am a happy bunny.  A Cath kidson knitting bag - complete with a book full of things my skills are not up to. I can dream though and arrange my needles in the bag and look all organised.  There is more stuff which makes me smile just to think of them. I am the type of person who can get inordinately pleased over small things.  I wonder if I smell though as seem to have more than my fair share of smellies for the bathroom.


As for life - spent bank holiday Monday at the hospital - daughter 'B' has shingles.

I know there is a not much medical evidence that Ehlers Danlos affects the immune system but I am convinced it does.  She was the only child at nursery to catch Scarlet Fever from a child who had travelled abroad and had it mildy.  Hers was not mild.  Aged nine years she had the most terrible bout of glandular fever.  which took absolutely ages to diagnose.

She is nineteen, whilst her friends are planning their New Year partying, she is a poorly poorly thing indeed.  My heart goes out to her.  At the minute I am blaming her gp (see post about disabled driving badge) for her run down state.  Had he not added to her burden perhaps the virus would not have reared its ugly head.  Can you tell I have not forgiven him yet.  

  I love her as I am sure you can tell.  The wanting everything to be just fine and dandy for one's offspring never ever abates. 

Husband fell off steps pruning a customers apple tree in the ice and has broken ribs.  I know I know, stubborn husbands who work in the ice and who should know better but still do. He was just trying to earn money. He's hurting big time -

So our house this Christmas has been a very happy one but it would be good if next year could be a healthy one.

Can you tell why I haven't blogged much its all a little moany.

I am very very happy though that we have a new dvd it works - yipee.   I watched the film of Jacquline du Prey last night - a very good film if you are in the mood to use an entire box of tissues..  The cats sat on my lap and the dog at my feet.  I watched this incredibly good film documenting the life story of this immensly talented musician who suffered with MS.  I don't make a habit of watching sad stuff but this did me good.  Despite all the 'stuff' going on at the moment it was a humbling experience and it helped me to stay positive in a way.  Because it reminded me that our 'stuff' is nothing compared to the suffering of others.

I order films over the internet when the rest of the house sleeps and always love it when the postman delivers a film I had forgotton I had ordered.  Next on the list is the epic Australia, which I am looking forward to. Another one too whose title evades me right now  Whilst the cinema is great its not particularly EDS friendly.  Films at home mean I can lounge around in my pj's, pause when I want.  laugh or cry a little too loudly and lose myself for a while.  Tonight spouse and I watched a very funny but odd film  Pineapple Express.  He laughed a lot whilst clutching ribs, I cringed a fair bit but did agree that in a mad sort of way it was funny.  Next I fancy a good thriller.  He would watch Sleepless in Seatle over and over, a man that likes a good chick flick.  He is a pretty macho type of bloke so when I first met him it touched my heart that he is not afraid to cry at a good old weepie.  He may drive me completely barmy most days but boy at the end of the day after twenty years he still has the ability to make my heart flip and thats not because of raging palpitations!

Determined not to have for an entire year a calendar on the wall chosen in haste then wished I had thought more carefully.  Is it only me that can get bored bored bored of a calendar.  So I ordered this one having trawled through literally hundreds on amazon.  Just my luck that out of the many available this one is out of stock!  no doubt it will arrive in August.  I am not very good at actually putting appointments on the calendar at the best of times but no matter.  This is the one I want.

Aurora-Borealis-Northern-Calendar

So despite everything life is good.  Looking out for the smaller things helps me to see that.  So even if I can't quite make it to see the Northern Lights - I can live in hope that I will eventually have my own private viewing on the wall.

As ever nothing profound or of particular note to say.  It also seems my vocabulary in blogging land is small when in reality I am a veritable thesaurus!  hah.....

Thinking particularly tonight of people in my reader who are alone or learning to live without a loved one.    In 2009 I found the blogging world and as it is nearly over I know that is another small thing thats made it better.

edited to add - when I said the cat's sat on my lap above - little did I know that was to be the last time both cats sat on my lap.  Bramble the son (aged 17years) of Bonnie (19 years) died of a heart attack the following day.  Bonnie is spending a lot of time 'calling' for him just as she used to when he was a kitten.  So I dedicate this post to Bramble much loved family pet for 17 years.