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I'm Still Here And Biting Back.........


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Hello everyone on this awful sunny day ,

I just thought I'd log in and keep a few of my friends up to date on what has been going on with the family.

1: Mark my disabled husband, you know the one with a knee & foot brace, no right hand , 2 stick to walk with , degeneration of the cervical spine at brain stem : C1 C2 C4 C5 , arthritis in his hips, knees and hand , well he now has 2 frozen shoulders and chronic M.E. and can hardly walk a few yards let alone do anything else, he wants to sleep all the time and the smallest thing hurts him , this has been going on for 6 months now ......and I pray it will end soon.

2: Mike my now 21 year old son who has 'POTS' ,has been fair , he has a bright yellow mini for the past 2 years which he loves and is now my full time driver . His sweats in the weather have been terrible and he is still bleeding under the skin on his face most nights ( not getting enough oxygen) we have both given up with his consultant who cannot seem to talk to a 21 year old as all he deals with day in day out is 80 year old geriatrics , so Mike is being cared for my our local GP., no girlfriends on the horizon yet !!!!

3: And me ...............mmmmmmm!!!

Well I had one of three operations a few weeks ago (repair to both my bowel & bladder) and my consultant was superb , he had drips going 24 hours before hand and 24 hours after the operation and I never suffered a POTS attack . Now operation number two is coming very fast .I am loosing use of my right hand /arm and the pain has been like someone shooting a nail gun into my elbow !!!!

Today I saw a neuro surgeon and he was very worried , I am to have an urgent MRI scan in a few days time as it appears I have a trapped nerve in the base of my skull , her's worried I may haver already done to much damage , but is hoping to get me in ASAP to open my skull up and sort it ........mmmmmm how nice , let a bit of air in may be and possibly he may see brain in there ....well one can only hope there is something in there.

I'm also having my third operation in a couple of months on my bladder ( yes, another one ) as I am still having problems.

Apart from this .........on the 5th of August Mark and I celebrate our 10th wedding anniversary ( well the 7th really but we wanted it to be at a weekend) Mike and I have been doing up the garden with loads of new furniture, BBQ 10 sets of lights and all sorts of wonderful things .We are having about 20 of our local friends over to celebrate with us so it should be a good evening. When Mark asked me to marry him ( in Mexico) he promised he would buy me really special ring one day and this is the time !!!!!!

I haven't seen it yet but I know its a carat of AAA tanzanite with 1/2 carat of diamonds around it .....................YES.!!!!YES.!!!!! YES,.!!!!! its the ring I have always wanted (lovely, lovely man )

I've added blue beagle beads and sequins to a very pretty blue chiffon dress which has 'Orchids ' on it, and I have used orchids as my theme for the night , so I have table wear, cloths, napkins, silk flower arrangements to go on the tables and everything I can think of in this theme , I have planned everything down to the smallest item ( well one can only hope) so as long as my surgeon doesn't suddenly call me in before the 5th we should both have a really great evening ( if we can stay awake that is !!!!!!!)

I have been reading all the forums when I can , but have been just to unwell to want to write anything.

So, as long as all goes well with my skull and bladder ( talk about foot and mouth !!!) I should be back writing soon .

Regards to you all and your family..

Ami xxxxxxxxxxxxxxxx

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Hi Ami, GREAT to hear from you though very very sorry about everything the three of you are going through. Wishing you all the best and hope your surgeries will go well. Please say hi to Mark from John and me too, we really hope he will start to feel better soon. And Mike cruising around in his Mini, how cool is that!!! Sending good thoughts your way!

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I'm jinked there is some sort of sign pointing down from the sky over my head and it reads ' chuck what you can at her , she is good for a laugh '

Yes today the 2nd of August just 3 days before our special reception I have4 had yet another fall and boy oh boy did I go down a bang this time .I was walking from our kitchen into the conservatory , we have those white upvc doors to this room and they have a small step to go over .I know I stepped over this sharp white door frame as I lifted my right leg......................but NO my brain said I did but my body didn't do what my brain said 'again'

I fell forward onto my right shin , cracking it about 5 inches above the ankle line , as the door frame was sharp I cut the front of my leg open , not content in doing this I then dropped the whole of my body weight onto the shin and sort of twisted as I dropped , this meant I scrapped my leg from the ankle to the knee against the sharp door frame causing one **** of a bruise some 12 inches tall by around 6-8 inches around my leg!

Not content in doing this I then hit my bum on the side of the door frame and I now have the most wonderful black/red/green and purple bruise on the right bum cheek some 6inches by 4 inches and OMG does the very base of my spine hurt and I'm constantly shouting out as I try to move around.

My leg is so painful my doctor ( we live out in the sticks) is still not sure if I have cracked my shin bone , but all I can say is that I'm getting pain at the front of my shin and at the back of my knee cap so if this doesn't start to go by tomorrow night I have to go to x-ray .

I just cannot believe it ..................Mike went as white as a sheet when I fell and had to sit/lay on the settee , Mark was upstairs and had to come down but couldn't pick me up as his shoulders /arms hurt to much !!!!!!!up , so I crawled across the dinning room floor leaving little dribbles of blood everywhere , which I might add the cats thought was very strange and kept running back and forth putting wool mice in my path !!!

Hay........ Ho.............. another bandage another day never mind now 30 people coming on Sunday and one legged, one handed , can't sit down properly little old me should be a nice shade of purple, blue, green and just a touch of turquoise to match my dress .

Have a nice day ....Ami xxxxxx

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