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willows

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Everything posted by willows

  1. 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
  2. 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
  3. Hello to you all after such a long time off the forums..........yes, its Willows and I am still alive and biting the heels of the world. I've been very unwell lately with a number of problems , one being internal bleeding which had to be sorted quickly and so I was seen by a very nice doctor at the hospital who discovered way up inside of me ( it felt like at least two foot or more!) that I had two haemorrhoids which had been bleeding rather a lot , or so they thought at the time . So innocent me agreed to a procedure called 'Banding' in which small rubber bands are applied to the base of the veins in order to cut off the blood supply letting the tissue die and the vein to nicely fall off. What this doctor didn't say was that 'normally' you have a local applied to the area, something she did not do ...........and so hubby was called into the room after I went a lighter shade of pale, grey lipped, sweating and almost hit the floor after she had finished. I then had to walk out of the consultants room and get into our car, something that I will remember for a long time . Anyhow , the outcome of this was that I am still bleeding from somewhere higher up and following some poking and prodding about a largish lump has been found at almost the base of my stomach ( about the size of a very large egg) this is not a hernia and so further investigations are being arranged as I write. I was supposed to have had my whole intestines checked out a few weeks ago but as the doctor , yep....... that same one as before , had forgotten my Pots and so just arranged a normal empty your system and away we go with our cameras on a broom handle type thing !!!!!...........she also forgot that getting dehydrated brings on a 'Wing-Dinger' of a Pots attack and I had to cancel the procedure a day before Christmas. Next thing is I have now been diagnosed with 'Hypertrophic Cardiomyopathy' .....blimey what a long name, basically it means I could die of heart failure as I have damage to the walls or some part of my heart ....add it to the list is all I can say !!! Having had heart failure in the past I know the signs and symptoms so this doesn't worry me , if I worried about all the things I had wrong I'd spend my days sitting in a chair looking depressed all the time, mind you I am getting more and more worried about my new lump, who by the way I'm calling Sir Lancelot as he (it had to be a him as most males are annoying at times) seems to be growing and causing some interference with my ability to eat (see a male all over)and as for the excruciating pains ...........well at least with this amount of pain I know I'm still alive !!! So, as it stands I'm now waiting for my new date and will hopefully find out what Sir Lancelot is and what he's up to in the next week or so . By for now, keep your chins up and remember to smile at the world........it keeps people wondering what your up to !!!!! Love to all Willows ( Ami ) xxxxxxxxxx
  4. Hello all, yes I know its been a very long time since I have been on the site but so many things have happened to all the family. Mark: now has really awful arthritis in his one hand and is waiting for the results of x-rays , he just doesn't know quite what to do for if he looses the use of this hand he will not be able to drive properly and do all the normal things we take for granted. He has also been having pain in his feet again and his walking is very bad at times. Mike:is now having to use a stick , he's been falling down quite a lot, once as he went to get out of the car , which was something of a shock for him as one minute he was standing talking to me then he was gone !!!! Mikes also had his very first 'full blown attack' OMG did he look like death warmed up and it shocked him for now he knows why it is when I get an attack I spend the next day (after it finishes) in bed .He had sickness, violent head pain , total joint aches and the inability to keep upright ..... ......ooooooooooops he's on the floor again. And me: well I've been about the same except I have found another tumour , but this one is very different. Its just to the left above my belly-button and is grown somewhat. I have been getting such pain that at times I think I'm going to pass out , if I'm out when the pain suddenly starts ( for no reason what-so-ever) I have got into the habit of grabbing hold of the nearest solid item and head down breathing through it , a bit like being in labour again !!!! About 7 weeks ago I found this lump , it was at the same time I had internal bleeding and boy did I bleed , so I had to first go and see a specialist and have a check up. She thought she had found the place inside that had been bleeding and offered to do some 'Banding' like an innocent fool I agreed and after some fiddling about I was suddenly in horrendous pain in the bum !!!!! Yes, the lady consultant had found three piles inside of me ( how nice for her) so with the help of some awful looking instruments she fitted tiny strong rubber bands to the base of each of the three offending little unwelcome guests .............if anyone ever offers this to you think twice then twice again. The pain was so bad that my throat went into spasm, sweat poured off my face and I went as white as a sheet , Mark had to be called from the waiting room and help me get out of the hospital . I had to take pethidine when I got home and for four days I was either bleeding, in pain or just felt like death again. After 14 days my little unwanted guests came away , but I have still been bleeding which is normally when the pain hits. So , the one thing they do know is it is not a Hernia, which leaves either a twist in the large bowel just as it joins the base of the stomach or a tumour ( malignant or none malignant) I have been having more and more problems eating , which does leave me to believe that the stomach is involved for I am finding I cannot eat more than what a two year old would eat , if that . My once lovely flat stomach is now very swollen and I've had to invest in a few tunics what are loose , rather like maternity wear :lol: So fingers crossed as on the 22nd December (could they get it any nearer to Christmas if they tried I ask you !!!!) having emptied my stomach, intestines and everything above and beyond (sounds like a film score) the consultants will take a big step and seek out from above and below , this large free loader who is intent on causing me such pain , swelling and discomfort and one hopes that on finding such said 'lump' they will decided what they intend doing with it and when (please, please not on the 22nd ) So..........from my family , Mark, Mike ,Harley and myself may you have a happy Christmas and a great new year and I hope to be sitting comfortably minus my unwanted guest some time in the near future . Happy Christmas love from ......Ami xxxxxxxxxxxxx
  5. I don't know about you but I cannot go out in the summer as the heat fro the sun makes me feel very unwell indeed. I have around 20-30 pairs of sunglasses and so many sun hats I could open a shop !!!!!! BUT...........this still makes little if any difference. I have a wedding to go to in mid May of this year and have been searching the net for ideas .............and found an Asian site ( in the USA) who make the most awesome paper sun parasols , fans and all sorts of things. Today I have ordered a pure white parasol to use with posh outfits and a cream hand painted one to use for everyday , along with this 10 paper white fans to keep in the car , by the front door and in hand bags ! None of the items are expensive , the parasols cost from about $5 upwards ( ?3.90) and they have some utterly beautiful ones in store. If any one wants to know the site just add the country above with ideas behind it and I can tell you you will spend ages just going through the items they sell and its safe as you can use Pay-Pal . I'm hoping that for once this summer I can go out shopping , visit the sea side and do all the things 'normal people do' under my very pretty parasols and may be set a new summer style of elegance ................. well one can only try cant you . Ami xxxxxxxxxxxxxxxxx
  6. Hello all ......the one handed woman is back again Today I have to go back for yet another dressing on my right hand. My left hand is almost healed now and its just very brown and the skin is tight , so hope to shed the skin rather like a snake does very soon. But my right hand is not doing well , I am supposed to go on Wednesday for a dressing but the smell that's coming from the hand is awful its not the outside dressing as hubby has been changing this every day and the special 'gel' dressing is changed every other day by the nurse in sterile conditions. But hubby thinks the skin that is left on the back of the hand is sort of rotting as the smell is OMG so bad . What's left of the skin , the last time I saw it on Friday with the nurse had started to come away , but not all nice brown and crispy , its slimy and underneath is raw weeping flesh :( Hubby thinks I will have to go back to the hospital to have this all removed before I get a massive infection from it , but if they do this my hand will be just an open wound of around 4 inches across the back of the hand by5 inches up to the first joint of my middle finger ( 10mm X 13mm) which is quite a large area to have no skin on at all. I'll let you know as soon as I can what the doctors/hospital intend to do to me . Never mind Sunday was a wonderful day for Mike, Harley and myself . Ami xxxxxxxxxxxxxxx
  7. Flop............Mark will be buying up chip basket nets like mad this week , thank you so much for such a brilliant idea. I had a bad night last night first of all Mike redressed my hands , it takes ages as each finger has to be dresses individually , any way having done a good job I carried on doing very small things around the house. At about 7:30 pm the niddle fingers dressing was slowly slipping down my finger , so without thinking I just pushed it back on........................ OMG ouch was not the word that left my lips............so grabbing all the dressing stiff I went downstairs to mark to get him to undress the hand and see what I'd done ................Oh....dear ! I'd pushed the dressing back in place .............along with the skin that was attached to my finger , this was now flapping in the wind ! I'd managed to push the section of skin from knuckle down to where the joint of the finger meets the hand , quiet a long strip and all I have left is a red raw finger which resembles a slice of uncooked beef!!!!! Never mind I'm off to see what the hospital say this afternoon with some luck I wont get my knuckles wrapped for doing it ..........in fact I haven't any knuckles that haven't been burned in one way or another so they cant wrap me over the knuckles if they wanted to !!!!!! Ami and her shadow Harley . ( wrapping ones knuckles means to hit them with say a wooden ruler or a small stick , teachers often did this to students who did not pay attention in class or who did something stupid)
  8. Thank you all for your kind thoughts and prayers. Today I've been very tired again and had some nasty spikes of pain in my right hand, which is also very stiff . Mark gave me a bath which made us both laugh somewhat !!! other tan this all I've done is watch Tv with my hands above my head , didn't want to eat or drink much or do anything as I felt rather horrible , this time I took my own advice and kept upstairs. Thanks again all Ami xxxxxxxxx
  9. I'm writing this with one finger .................... On Thursday at exactly 5 minutes to 1 pm , clever woman here was trying to make a roast dinner for us all . I had managed most things even though I had had to go back to bed that morning with extreme pain and tiredness and it just didn't register with me that having dropped a number of items since then and walked into things that I was a bit unsteady ..................how I wish it had. The last thing I had to do was take the cabbage off the boil and strain it ...............yep, this is where it all went wrong. As I took the lid of the pan and placed a tea towel on each of the side handles to lift it up with ( I'd turned the gas off but the water was still bubbling), I felt a slight click in my right wrist , but by then I had lifted the pan some 4 inches of the stove...................my right hand/wrist gave way and as the pan tipped downwards boiling hot water poured over the back of my right hand from : the line of my wrist joint.....over the whole of the back of my hand......from the little finger to the underside of my thumb .....including thumb, 1st, 2nd and ring fingers to the middle joints. As the boiling water hit this hand in an attempt to stop the rest falling off the stove onto the floor onto my bare feet I grabbed the handle with my now scalded hand and over tipped the rest off the water onto my left hand including : little finger, 3rd finger front and back and the edge of the hand ..........all this took place in about 10 seconds My husband has never heard me scream before and came rushing into the kitchen only to walk onto the boiling water on the floor and lots of very hot cabbage . Seeing me tears streaming down my face trying to turn on the cold taps somehow sent him into some sort of 'Ami survival mode' !!!!!!!! He took both of my hands ( the right hands skin was now coming off the back of my hand )and turned the cold taps on full , then filled the sink with cold water and salt plunged them into this ...............shouting at mike to find car keys, coats , shoes they dressed me at the sink still with my hands in the water , Mark then placed two clean tea towels in the water , wrung them out and wrapping them around my hands half dragged me to the car . We live about 15 miles from the hospital and all I can say is I just hope there wasn't any speed traps about because we logged into A & E at 14 minutes past 1 'O'clock !!!!!!!!!!!! I was seen straight away and given 30 mg of morphine + other drugs as the pain was unbearable . The out come of it is : My right hand is an utter mess and bandaged from finger tips to past my wrist ( all except little finger ) and my left hand is bandaged : little and next finger and across the palm .I was seen by an A & E doctor, then a burns doctor, then a plastic surgeon as the skin across my knuckles is now tight and swollen and they are afaid it may tear if I try to bend my hand ( OMG sick or what :( )..............I'm not going to bend it mate !!!!!! I had the dressings changed today by our local nurse , OMG my right hand looks like its been par -boiled as what's left of the skin is now white /grey and as you would expect very painful , my left hand is blistered and sore but about 10 % of the right hands injuries. When I got home a message was on the answer phone from the plastic surgeon telling me to come in on Monday afternoon to see them again, so the nurse must have called them. I cannot drive, shower myself , use a knife and fork and do all the things you take for granted , so now I know how Mark feels . I have to walk about with my hands up on my shoulders ( not hanging by my sides ) because having them above the heart means I dont get to much pain and if I sit down I have to hold them upright . They think the left hand will be OK by middle of next week but ............my right hand may take two. three or four weeks depending if I have to go in for surgery on it , I'll keep you up to date. So what is the lesson learnt from all this : ???? IF YOU HAVE A BAD MORNING AND FEEL SHAKY , WEAK , STIFF OR JUST PLAIN UNSTEADY DO NOT LIFT BOILING WATER ................... :wub: Ami and her white furry digits ...............
  10. Snap ..............eyes are the bain of my life at this time I have two pairs of glasses now : one for reading when my eyes are playing up a bit...........and another for when I cannot even see the Tv let alone read! I get a lot of blurred vision when my pots is running very fast and that's normally when I have to lay in bed flat for 2-3 days , so I usually watch Tv or if I'm really bad sleep, sleep and even more sleep . But with my eye's gong in and out and blurring all over the place watching TV is getting a real problem now. I suggest you go and get your eye's tested and if possible go and see an eye consultant at the hospital as there are other tests that can be done . I now use liquid tears for when my eyes feel painful and 'huge' in the sockets. I also have other drops to use as I have the start of Glucoma and some steroid drops for when my eyes make me look like I've been out for the night with Count Dracular !!!!! Don't over tire your eyes and always have a good light to read with , sunlight is bad for my eyes and so at this time I think I own around 25 + pairs of sunglasses , these are in the car , handbags, other peoples houses and even my son carries a pair for me in case the sun did come out, I am now finding bright sunlight a bit of a pain in itself , so looking 'cool' 90% of the time is no big deal ...........even when the shop lights are so bright its like being in the middle of the Sahara desert !!!! Look after your eyes ......Ami and her shadow 'Harley'
  11. Well we are still here biting the ankles of all around us On Monday we are having a brand new stair lift fitted ..............you can hear the singing and dancing from us all if you listen hard :lol: Mark is a bit better now , still not sleeping properly but his big toe ( nail removed one ) is just about healed BUT.............................we did have a small problem with a swede ............not not the living kind from over the water who are blond , but the hard round veggie sort that come from the ground ! Our fridge had a bottle of milk on its side in it and as per usual it leaked, straight into the veggie boxes, so hubby dragged the two veggie boxes out onto the kitchen sink and started to empty them , as he did so he was talking to each item ( strange husband is he not !) so carrots all lined up , courgettes , then a large head of celery ( which he hates ) was placed beside two large swedes which had been placed carefully just by the edge of the unit. Hubby not content in chatting to the celery but went on to say how he detested the stuff and picking it up started to wave it at me , who was standing bare footed right beside him. We are a family who walk about the house bare footed ( its better for your feet ) so standing there with nothing on was nothing unusual ( that's feet , not clothing or that would be rather strange !!!!!) so hubby having waved the celery in my direction went to put it back on the unit when he tapped a large swede ..........which then rolled off the unit and dropped right on his nail-less toe as I turned to see why he was shouting ............the swede bounced off hubby's toe and straight onto my big toe l ..... talk about noise. Hubby was now dancing about the kitchen saying words I am not allowed to repeat on site or that a lady should say, followed by myself doing the same ( except I didn't swear ) .................Mike our son was sitting in the lounge watching all this ( he didn't see the swede fall or hit us both ) and was now shaking his head in amazement as he watched what he thought was two fully grown adults doing some sort of dance in the kitchen 'out of the blue' holding a foot with tears running down their faces! It wasnt until he saw Marks toe bleeding again and us two whacking a swede on the head with a wooden sppon and a rolling pin telling it that its going to be boiled alive tonight and then smashed into little bits for playing tricks on us two defenceless people that the penny dropped . Well its never a dull minuet in our house is it , next Sunday 14th is Mikes 19th birthday , Harley Davidsons very 1st birthday and Mothers day in the UK ...................blimey that is a lot of work for hubby . By for now Ami and her little black shadow 'Harley'
  12. Hello everyone again, Over the past few months I've been trying to get myself together , not an easy thing for most of us but with Mike up and down and Mark more down than up , esspecailly when it comes to stairs it has been a very hard few months , which is why I've been very quiet here. I've now sorted out a new bathroom for us, having a wet room instead of a bath with shower over it should make a lot of difference. I've also sorted out a stair lift for our very steep and twisting stairs, poor old Mark has come a cropper on a number of occasions and each time he hurts himself a little bit more, so the stair lift is a real must for us here. Mark is a little better , his two broken toes from the last stair fall have mended and his toenail which was taken off the same foot is now almost healed. He's been a bit down in the dumps over the past few weeks so he went and camped out with a mate of his ( in the freezing cold ) and came home feeling a lot happier, some might find this a strange thing to do but Mark was a mountanear and ice climber before he started to fall and then have to wear a foot and ankle brace so the cold is in his blood and sleeping out under the stars is his idea of heaven. Mike has to go back to the hospital on the 3rd of March for his test resualts , some of you may know that I discovered that Mikes heart was raceing all night at around 200 bpm and he was so tired 24/7 that he had to come out of college in November 2009 and as yet has not returned . On Monday he starts his driving lessons as he now feels its about time he goes from 2 to 4 wheels , still single he will be 19 in three weeks time , OMG how time flies now. Harley Davidson , my four legged furry bottomed critter will also be 1 year old in March ( same day as Mike ) he's still as crazy as ever and each night comes and lays full outstretched on me with his head under my chin and his two little paws either side of my neck , he is such a long slender cat that his back feet almost touch my ankles then he does this and his tail still drags on the floor when he walks. I'm still able to call him in , when he does go out for an hour , by meowing at him and it doesnt matter how far he is he comes running like a bullet from a gun !!! A real 'mummies boy' I can do anything to him and he still tries to wash me when I go to sleep .......his latest thing is to bring me gifts of dead mice, the front door mat, some clean underwear ( out of my ironing basket) and one slipper all are carefully pulled up the stairs in the dark at night to place on my chest for inspection , so its a good thing I'm not terrified of mice its it !!!!! And finally me, well my fingers are getting worse and I now have four that are growing hard bony joints that hurt each and every day 24/7 , this is making my writing a pain , but as ever I keep at it. Some of you may recall that in 2006 I found after searching for some 35 years my closest and best friend Karen, who lives in Suffolk , we met for the first time on her 50th birthday Well we have been in contact ever since then and written, emailed and talked on the phone for many many hours in the past 4 years. In May last year Karen's dad died and in November of the same year her mum , both of these people had been so good to me in my youth and Karen had been their main carer going in every single day to help them as well as looking after he own family and working at the very school we both went to in our youth. Well Karen has been having a very bad time of it since her mum died , what with this and her sister behaving in a very distressing manner about the parents old home, contents ect its all become a bit to much for her and she is now suffering from very bad depression , anyone who has had a perent die will know how hard it is, so think about loosing both in 6 monthsand then having a sister go scits-so on you as well . Karen arrives here on Monday afternoon for as long as it takes to brake the circle thats making her only see the worst of life ................and as I'm the only one who can get any sence out of her and ven talk to her at this time she may be here for some time , the boys are behind me in this and even her husband and her three daughters think its the best thing for her . So................I've warned the locals that next week there will be two 15 year old school girls mascarading as 50 year old grannies in the village so beware . With luck I will be able to lift her out of the dark and into the light within a few days , I did this once before when another of our friends died at school from cancer aged 13 years old ( I trained as a Sam ) so taking to people in this way is not a new or hard thing for me to do and if some of you have read my story you will see that I have had just about everything flung at me in my life and still walked away sane and intact . Well bye , bye for now Happy Valentines day to all ..................Ami and her trusty little black shadow 'Harley'
  13. Hello ..................well the doctors seem to think I've had POTS since I was 13 years old , that's almost 41years as from tomorrow at 10:32 am !!!!! and my 18 year and 11 month old son has had it slowly but surly creeping up on him since he was a sweet blonde haired boy of just 4 years old ., Mikes still of college as they have now discovered his heart is racing at 200 bpm each night when he goes to sleep, which is why he's so tired every single day . Me my heart beats at 35 bpm , all night which is why I'm so tired every day ..... so me thinks if we had half of each of our hearts we'd be quite normal , mmmmmmmmmm mind you hubby here is of the thinking I'll never be normal So in all I've had over 59 years and 11 months of full on ....chuck it at me .....I'm ready for what you can throw ................ mind blowing , brain numbing experiences in POTS ....................why me ??? why us?? a question my son and I ask ourselves at least twice a week and get no answer . Ami & Mike ..................still biting the ankles of the world ....snap....snap.
  14. Well, I was right poor old hubby had concision for about 4 days and lost quite a bit of weight from not eating , but I'm pleased to say he's feeling a bit better now ........................except for the toe About 7 days after the fall he had to go to see the foot doctor to have his big toe nail removed on the other foot as both sides of the nail for no apparent reason had decided to curl inwards and grow into his skin , the pain has been really bad as he has tried to walk on it and of course its become infected , swollen and very red indeed , so now he has two broken toes on one foot and a big bandaged toe on the other foot . BUT............the best is yet to come................you will never ever believe this !!!!!! My one handed , knee and foot braced hubby , who has degeneration of the cervical spin at brain stem C1 C2 C4 C5 , chronic fibromyalgia and fatigue syndrome, has now been diagnosed with a form of strange depression ( no he's not depressed its just something from his very early years playing on him ) he cannot walk without his stick on his hand less arm and falls without his braces on ( as the above has proved ) he had sleep apnoea plus other small heart problems .......GUESS WHAT ????????????????????????? Some person in our area is watching us ................creepy or what How do we know this ?? because my wonderful husband has been called into the DHSS offices and been accused of doing PAID WORK ( in other words he has worked for cash and not told anyone pocketing all the money and not paying tax or insurance, basically defrauding the country of money ) and guess where he has been accused of working at ...................HOGWARTS CASTLE Some sick person has called the DHSS and told them that my husband has been working for HOGWARTS and being paid for it ..............OMG how sick is that . Of course we both started to laugh when the interviewer told as the companies name and she must of thought we had lost the plot or gone mad ! So I spent about 3/4 of an hour telling this person all about HOGWARTS , who designed it , who made it , who paid for it , how much money we had raised in the past year when it was out and the vast amount of times this year it had been up for the children to see.............once . I spent ages telling her who put it up and took it down , how much of a problem it is now causing us , and how that after 8 years of planning , making , finding , begging or bowwowing stuff to finish it ..............its now for sale , lock , stock and Dobbie the house elf ................ What a sad life this person must lead if all there life consist of is watching others and then making anonymous phone calls to the government because they somehow think a disabled family, who has spent time and money putting together something to raise money for sick children in the UK is paying the volunteer's who help me out . OK ..............OK ...............I won up I did pay my husband !!!!!!!!!!!!!!!!!!!!! He had 1/2 lb of strawberry foam sweets and 1/2 lb of foam ice cream cones, would the government like to charge hubby vat or tax on them ???? My hands are now very bad and the joints are growing bones lumps on them which is making running the castle very hard work , this and the fact that every time I've had the castle in use I've suffered an angina attack makes running the castle something our family had to look at hard, we decided that however much we love running it for the kids the pain and suffering that we all have to go thought in order to this is just to much and so its looking for a new home and new family to care for it . It would make some little girl/boy who are Harry Potter mad the most envied child of all time because they have a wonderful play castle for the garden . But all things aside , its really horrible to think that we are being watched in our own village by some nasty minded individual . A very angry Ami .....................
  15. I just think that not only is my house 'jinxed' but we all are as well. OMG , what a week we have all had ..............will this bad luck ever end ??? Sorry I haven't been on for sometime but 'mother here' our main online computer crashed big time and we lost the hard drive and everything on it , Yes we did back up everything on another external drive , but believe me everything it was not and we had to pay out over ?250 ( $500 ) to get the computer sorted and up and running again , but in between this OMG its been awful here. On the Sunday I stared some new drugs for my Raynaud's , on Monday I felt a bit weird then on Tuesday .................. what happened to Tuesday , well I missed the whole day as the drug lowered my blood pressure so much I was out cold, didn't eat , drink, move and according to hubby didn't seem to be breathing either, lots of people came in and out of the bedroom according to Mark to check on me , the doc said I was OK to be left as it was the drug and not my POTS doing a nasty on me again ,so hubby, son and the docs have all decided that I'm not taking those anymore! On Wednesday the doctor gave me yet another drug to sort out my cholesterol this time as I had to come off the last one as I stared to loose the plot and get a sort of pre-senile dementor, my level was now at almost 8 again so i needed to get this sorted or risk a stoke or heart attack , so I took the drug at 9 pm that night and by 10 pm I wanted to be sick , sick , sick and even more sick ................OMG here we go again . I slept on and off all night only to wake up at 5:30 am with a horrible headache and to hear hubby fall top to bottom of the stairs............. shaking the whole house .......BIG TIME........and the language that came from him was enough to turn anyone's hair white and the local vicar ( who lives two doors from us ) must have heard it I'm sure Both Mike and I managed to get put of bed to see him stagger into the lounge followed by the kitten who was crying at the top of his voice wondering what was going on . Mark had broken his middle toe, hurt his elbow, his knee and somehow damaged his back , he was white as a sheet , but as per normal would not let me get him any help. I went back to bed to lay down as by now the room was spinning and I needed a bucket under my head ! Later that day Mark, who had just curled up on the settee in the lounge was still not getting up , eating pr drinking , which made two of us as I was still wanting to be sick . By 6 pm that night , Mark and still not moved so I called our doctor and between me sicking up and having to stop because of the now chronic headache I managed to tell her that ........ 1: Mark had done a spectacular fall from top to bottom of the stairs and was not moving , I suspected he had concussion as well as other Minor injuries including a broken toe, he was white as a sheet and his eyes did not react very well to light . 2: Also the last drug they gave me has caused me to be sick all day, my blood pressure was in my boots and I had a splitting headache to match Marks!!!!! I don't think my doc knew what to say or do at this point ! She wanted to come round to sort us both out but having poked mark he refused ( this was more like his normal self again ) so after some advice I got hubby to drink and although white as a sheet he did start to stagger about a bit . Its now Sunday night /Monday morning and Mark is still limping about the place , my last lot of drugs have left my system ( thank you so much ) and things are looking a bit better again . Mike is going to see the sleep clinic next week , he has also been put onto some antidepressants for once again become very tearful, but as someone said in the last post I wrote about Mike , you really do know who your mates are when something like this happens and boy of boy Mike has some great mates............its been none stop here and I've just got rid of the last two lads who stayed the whole of the weekend , last week whilst mark and I took turns being unwell we had a couple of his mates come every day to see Mike, I'm so pleased with this as they made sure he ate properly. With Christmas coming up fast now and things to make like the mince pies ( still unmade ) the food shopping to do and a few more gifts to buy ,I've bought, wrapped and got ready to post off 90% of the Christmas stuff so I'm doing well even thought the house seems adamant its going to inflict harm on us all !!!! So with just a couple more presents to buy of the boys , well things are looking a bit better and as from today I haven't had a bucket near my chin for a whole 24 hours !!!!!!! I will try to come back on again soon and let you know how things are going with the boys , although I have now called Mark ' Hop-along -cassidy ' , poor old man what next for him ???????? Look after yourselves and just think, I bet your happy you don't live in our house with Christmas coming fast . Ami, Mike, Mark and the little black hooligan who keeps us all laughing .........Harley Davidson ......now aged 9 months ans still very much a mummys boy 'purrrrrrrrr-------purrrrrrrrrr.xxxxxxxxx
  16. Thank you all so much for your kind words, knowing that other mums have been in the same situation as I have been in has helped a lot . Yesterday both Mike and I went to see our local doctor and he is sending Mike to see the sleep specialists , like Mac's mum I to thought he may have sleep apnea on top of all the rest and our doctor agrees, in fact he was quiet impressed that I had linked the facial markings to lack of oxygen and the fact that Mike was so hard to wake in the mornings. We are still waitting for an appointment for London , but given the problems I had there nether Mark, Mike or I are surprised of the lack of contact so far. On not such a good note, I spoke to the doctor at the same time as Mike because my hands are now throwing out 'nodules ' from each finger joint which are bright red , hard and very painful , as well as this my hips have been so bad recently that I've been in constant pain 24/7 in my left side ( inner ) lower back . Even more worrying is that I'm forgetting things again .............silly things like my own daughters name and date of birth, who people are in pictures or why something is in a place , so I'm now being tested for memory loss heck , if I get old and senile before my time , Mark can always use the bibs and cot we have put away for Mikes children ( in the future) and I have a new pram under the bed so I could always use this instead of a wheelchair if I get to decrepit! They had put this down to the Statins I was on them to lower my jolly old cholesterol, but as I've been off them now for about 4 -5 months it looks as if it may be something else, well I've always said I only have half a brain ........the good half ! I'll let you know whats happening with Mike over the next few weeks via this site, Oh if you go into the pots photo site under family/members are photos of Mark, Mike and myself so you can see who your writing to now ...............unfortunately By the way , if when reading the first post you thought I had lost the plot as parts of the sentences didnt make sense , errrrrrrrrr, this is also part of my problem as I think I'm writing something down when actually I'm not , I've had to read , re-read and then re-write this post a few times to make sure its OK and that includes all the words that are written back to front !!!!!!!!!!!!!!!! Thanks again for your supportive words. Ami xxxxxxxxxxxx
  17. Yesterday was a sad day for us all here. for Mike my 18 + year old son having completed years one and two of his course and having started the third year ( 2 final years of a 4 year subject) has had to resign from college and the course because he is so unwell he cannot carry on . He is very down at the minute having to admit that he has reached the end and just cannot carry on , when we all sat in the college talking to the staff about this Mike struggled to talk about how hard everything is at this time , his pain , lack of concentration , memory loss, the tiredness and how he felt that he just didnt have the strength anymore to actually drive himself to college , let alone then study for 4-5 hours , at times he almost broke down in tears in front of everyone and it was so hard not to grab him and hug him in front of all the staff , but doing this I feel would have made things even worse . After we left the college Mark and I took him for his favourite lunch ( Pizza land ) and I had along talk ( and hug ) with him as he still hadn't actually made the decision to leave the course , so i took this out of his hands and made the call myself . Mike now has three months , November , December and January to get some help with the condition , rest and get some help with the depression what we can see slowly growing in him . Mikes lost so much confidence that he's staring and freeze all of the 6 dozen mince pies for christmas, help me decorate the christmas cake , wrap gifts and generally do 'happy things 'about the house so that he forget for a while college, study and what he is going to do with his life , both Mark and I know what he can do and do well so with some careful planning of these things we know we can bring back his confidence , after all actually being able to make something that everyone thinks is really good and taste delish boosts even mine and I've been cooking for over 49 years ! Neither Mark or I are surprised by this happening as we have had more and more problems with waking Mike up every morning, even though he is going to bed and sleeping 'out cold' from between 8 pm -9 pm each night come 8 am in the morning he is so 'out of it ' we cannot wake him up and it can take up to 20 minutes of careful shaking , rubbing his back and talking to him to bring him round , even then he's still tired . For the past 6-8 weeks on waking he has been covered all over his face with Petechiae ( bleeding under the skin , I suffer from this as well but get it on my feet and I know its due to not getting enough oxygen whilst sleeping , which leads me to believe that also like myself Mikes heart beat is falling below 35 beats a minute each night or so . He is very upset about leaving college , but as his disablement advisor said , if he can get sorted out in the next few months then he can return in Jan or Feb 2010 , but I dont see him going back to Public services or finishing his course. Its like one by one his hopes and dreams are being shattered by POTS, he gave up going into the police because his fitness was rubbish , he decided on forensic because at least he was working along side the police and would be involved in something he loves, but now this has also been shattered and we are all at a loss as to what to do next. I still feel so guilty about Mike. why oh why did my wonderful son get this rotten condition , he is so good, so kind , caring , helpful ............he's never done anything wrong in all his 18 + 1/2 years, worked hard at what he's done , worked hard with charity work , which most 18 year olds wouldnt have touched at all , he's never moaned about all the horrible procedures he had to have done to him in hospital since he was just 3 years old and has never asked either Mark nor I for anything other than our love and support , he is for us the most wonderful son and we are so proud of him for all he's achieved . Yet ..........................POTS has attacked him and at 18 +1/2 years old a lot further on in the condition than I ever was at his age which scares both mark and I so much. A really worried Willows .
  18. Thank you so much for posting my pictures, I've just had a look and they are all there ............my wedding photo with hubby dearest, Mike and I on one of my birthdays, a shot of inside Hogwarts castle with myself dressed in full teachers custom and Mark and myself at his daughters wedding , not a good clear picture as mike took this with shaky hands . Willows.
  19. Thank you all for your replies. First of all I said a unfond farewell to Gilbert ............hes gone along with another of his mates called 'Burt' but lo and behold a little ( well not so little ) mate of theirs has decided to start growing again now and I'm the not -so-proud owner of a nice squishy lump in the joint of my left wrist , so I've called it 'Humpy ' hopefully Humpy will be going 'walk-about' to investigate the inside of a surgical bin soon ! Now do you want to hear something awful................read on : Yesterday we all went to the country fair at Powdering castle in Devon, it was a nice day not to warm or to cold so my son and I for once could walk around without feeling faint , stressed or freezing cold . We made our way to the back of the big show having visited the ferrets, owls, birds of prey, the wonderful fluffy ducks ,huge chickens and lots of other small animals who had been entered into events to win show cups. The food stalls all had us dribbling at the mouth with 10 year old cheeses , apple juices , jams, fudges and tons of home made breads and cakes and then found our way to the private stalls that were at the back of the show , one of these was 'GTS TOYS' it did not say which town it was from but I got the impression it was from around Devon somewhere. Having wandered into the tent to have a look about for an item or two for my 'granny box' I left my son and his carer outside the stall smelling large highly coloured bouncy balls, a few minutes later I was made aware that the toy shop owner was talking to my son and so came out to see what was going on and the following unbelievable event happened. Mike , who you know has a horrendous heart condition was standing talking to a shop owner about these kids rubber balls hanging on the front of his stall, the shop owner was saying that each ball had a smell of fruit about it . He then left us for about 10 seconds and came back with what appeared to be ..........'A STANLEY KNIFE' or people who do not know this knife by this name its a crafters knife with disposable blades in . The stall holder said to my son ' Here take this and pop one of the balls so you can smell what I mean about the fruit smells ' my son looked surprised as I did but like any normal person having a knife dropped into his hand he didnt think any thing was odd . BUT .......................IT WAS A TRICK KNIFE AND WHEN IT HIT MIKES HAND IT INSTNTLTY GAVE HIM AN ELECTRIC SHOCK . Mike immediately dropped the knife to the ground and I saw him wince holding his hand he look really shocked , this horrible GTS TOY shop owner actually laughed as I told him he was so lucky I didnt beat him around the head with my walking stick !!!!!!!!!!!!!!! This man put Mike life at risk of a heart attack , in fact anyone who has a bad heart condition at risk of one because something as simple as an electric shock like this can bring on heart failure, attack or a number of other problems , how do I know ? because many years ago I had such an attack from the static shock when calling a lift in a department store . I was so angry with this man , who still thought it was funny when I informed him that Mike had a heart condition which was unstable at this time , he just kept saying so what , so what , and then said 'well look , I'm getting shocks from picking it up ' and laughing at all three of us . OMG , has this MORON at GTS TOYS has no understanding of people , he may not have problems from a shock but my son did and he could have killed my 18 year old son because 'HE WANTED A LAUGH' I found the person in charge of the show and informed them that I was furious about this and the lady agreed that this was not an appropriate thing for a shop owner on her site to do to anyone , let alone a disabled person . I will be emailing the fair in a few minutes to see what was done but as far as my family are concerned this man got of lightly and I am about to email our local police to inform them that Mike has been assaulted by a toy shop owner !!! As I have always said on this site , its like there is a big sign hanging over our family saying ' Get your laughs here , do what you like to them and never mind the consequences' I'm keeping an eye on Mike at the minute because any shock to the heart can still have an effect up to 48 hours after the event . Am I angry .................. ? well if you look outside you may just still be able to see the steam coming from me ..........AAAAAAAAAAAAAAAAAAAAAAAhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh
  20. Well I can honestly say Mike has had a dreadful summer . Mike has not only been verbally abused and humiliated my some of the lads he used to go to school with , but he has now developed more symptoms of POTS and is having a bad time of it at the minute. His humiliation started when the lad he used to know well and who has been here at the house as a mate got a car , he then proceeded to drive past Mike when he was out with a load of other mates in this car with the window down and call horrible names out of the car window for everyone who was around in hearing distance of him like : Spastic, cripple, weirdo etc and pray why ???? Because when my wonderful son gets so much pain in his legs that he was difficulty walking and limps or staggers this low-life thinks its funny to abuse him becuase he's unwell. He also calls him names because Mike looks pale or even slightly yellow in colour , another sign that Mikes unwell ..............what is this world coming to But my wonderful husband , being who he is did not let this person get away with it for as soon as we became aware OMG all h*** let loose!!! This lad by the way isn't a kid , no he's a lad of 18 years old and in my book an adult who should have known better given the fact that he went to school with Mike and KNOWS that Mike is ill and has such a rare medical condition ...shame on you . So Mark went to see his parents and told them of the abuse there precious son was doing to Mike and I think we can say that the air that night in that household was all the colours of the rainbow and the mother of this shameful lad was so apologetic that when we next saw her in the village she was so embarrassed by what he son had done didnt know what to say to either my son or I and went scarlet , well it is our job as parents to stop this sort of thing and if I discovered my son being abusive or unkind to someone in mikes state I'd go absolutley ballistic with him , which I hope she did , Next : Mike has now moved on again , which is very worrying as it took me years and years to get as far as he is now. He's now developed the sweats and is finding it hard to cope with this downpour of heat, water and then chilling off and guess what ? Yep this summer not only was I made a prisoner in my bedroom but next door was Mike stuck in his curtains drawn , telly on laying on the bed exhausted, sweating , tired , and just down right fed -up. His ability to cope with the fatigue is terrible and today when we went to see his consultant he feel asleep in the car on the way there . So, Mike is now being sent to Queens Square in London to see the Proff with mum here going with him . Mike has in all his 18+ years never been to London as being who he is I deemed it to dangerous for him and the risk of him being 'taken' was to high ( many of you know who Mike and I are so this will make sense to you ) So in all this summer has been dreadful for us all .......family update: Mark......Oh, crazy one : still pottering about and falling in his Leg & foot brace, spinal problems still 'ticking away ' but now they think my wonderful husband may be 'bi-polar' OMG what next for the poor man ! Mike.......out of control high heart beat and low blood pressure, chronic fatigue, excessive sweating , digestion problems, headaches, blurred vision, nausea, chronic leg pains, lack of sleep and to much sleep .He passed his 2nd year at college and is now a 3rd year ( we are both so proud of him under such terrible circumstances) and the college has after 3 whole years now accepted that Mike is disabled and sorted his parking space, been made aware by the internal messaging services that Mike cannot do 10 mile walks, go out on the moors with the marines or do anything that will make him collapse in a heap on the floor going into heart failure...... thats 3 years its taken them . Mike is also now having a monthly allowance from us as we feel at 18 years old he needs to feel he is NOT sponging from us for every penny but that he is in control of his own money , this his brought the biggest smile to my sons face since I once again upgraded his bike ( yes, 3rd bike in 12 months ) to a limited edition speed-fighter in bright red and white , which I might add he was so pleased with he almost passed out again from ..........................cant win can we !!!!!! And me......... well , I've become a granny again which makes a total of 8 grandchildren , one of best friends has just become engaged and we are getting ourselves sorted for a May 2010 wedding , my brother has after 25 years met and is now ' head over hells in love ' with a nice lady ( he's in his mid 40's and is still single ) and once again they have been trying to improve my daily living by cutting drugs down or increasing them here and there and what happens ............I am stuck with my head down the loo and then flat on my back for 3-4 days before I go back to the drugs I was on ...........oh , happy days . But the worst thing this summer was the fact that I started to show signs of ...............DEMENTURE ........... not knowing where I was , what time it was, what day it was etc and guess what ? It was my simvastatins doing this to me so now I'm off them for a while which means my cholesterol will go flying up to the moon and back as I make cholesterol all by myself and can go up to the mid 20's+ .........what a clever girl I am !!!!! We are having our bathroom made into a wet room because we all keep 'hitting the deck' trying to sort out the shower over the bath, and we are now having stair lifts fitted to the house as mark keeps , still doing a 'lets have a very close look at the stair carpet on the way down ' which I'm pleased to say he still thinks is very funny ! So all , I do hope your summer hasn't been as bad as ours. The only good thing that has happened to us is our dear little Harley Davidson , who is now a whole 6 months old .............but wait , even he has been ill Getting a frantic phone call from Mark on morning as Mike and I where on the way home to 'get here quick' Harley was foaming at the mouth, snot pouring from his nose, banging his little fluffy head against the walls and falling down the stairs trying to reach Dad........screaming his poor little head off. My poor little furry bottomed critter had only gone and bitten a wasp which had stung the roof of his mouth and of course he didnt understand why the thing had hurt him ! So it was a mercy dash at 'very high speeds ' along single country lanes at about 70 mph to the vets for an injection and to be watched for a few hours for as you know wasp stings in and around the mouth in such a small kitten as my little one can and will block the airways and cause suffocation . Blimey , what next ........suggestions on a post card , but not to me please ! I do hope that your summer wasn't like ours and hope you are all doing well . A somewhat still crazy as a box of frogs .........Ami , Mark, Mike and a big purrrrrrrr from Harley .
  21. Hello all ...............what a few weeks we have all had here. First of all I've been very unwell and had around 10 full blown knock me off my feet , head in a bucket , unable to talk, walk , eat or do anything but lay flat on my back in the past 30 days ..............errrrrrrrrr , not good news, BUT my ever on the ball local doctor has tracked down the cause of this and I'm now off the drug which helped me loose weight . This drug made my heart beat speed up to what I'd class as 'normal' ( around 70 beats average then rising when it needed to ) the out come of coming off it 'cold turkey' was I had a really horrible 'crash' for three days in which I just slept ......slept and slept even more . My friends mum has still not been cremated as the crematorium had an open day to show people around so they could see all the good work they do !!!!!! Considering she died about a week ago now it is not until the 15th that the family has the service and she is then laid to rest , this I think is awful especially for Dear Karen who like me loved her mum to bits and the stress Karen is now suffering is just intolerable. Marks been away in the lake District with a friend of his camping , I had said to him as soon as he got his knee/leg brace he should go as he had not been away like this for over 6-7 years now , and then as soon as he went I became very ill................typical. Mike is still OK at the minute , he's had his drugs increased and is still getting that awful leg pain we get .His brand new 'Sum-up scooter is now in the repair garage as we've had so much trouble without and its just 4 months old , I threatened to take Peugeot to court if it wasn't sorted out ASAP because if I've spend at least ?1,000 on his leathers , helmets, boots,, gloves and then got him the top of the range insurance ............why would I then want him to ride a bike that potentially would let him down big time and have him under the wheels of a car ??? So its all being sorted now at no cost to us , which I feel is the least they can do under the circumstances after what I paid for it . On the 13th of June from 11 am until 4 pm in Ivybridge Devon ( thats this Saturday ) Hogwarts Castle once more opens its doors to the public , I've now added to the event a Death Eaters costume complete with an awesome mask and Harry Potters Quidditch costume complete with his fire bolt broom ..............and have now spent 3 hours solid .........yes.......3 hours ironing all the costumes ( around a dozen of them in total used by us adults ) and about 40 meters of the fabric used to line the walls of two of the castles rooms ( chiffon's, nets and metallic fabrics) Our conservatory now looks like part of Diagon alley with boxes of stuff everywhere ready to go and Marks camping stuff ready to be out away now he's back home from the Lake district . A very kind company that I've used in the past sent me two large packs of feathers in pale gold and bright orange so that I could add to Fawkes coat' he was looking a bit sad as he'd been handled rather a lot last year , so having had a long talk with him about 'care of his feathers ' I've now made him look like he's been re-born again which for a Phoenix is rather funny !!!! Sophie and Harley are doing well and you wouldnt believe how much the little hooligan has grown ..........and how fast he's getting . Poor old Sophie is being attacked left, right and centre by him as he tries out his defend and attack modes on his mum which we liken to the terrible 2's time in most kids. All in all its been not a good, a tottally unexceptable and then to end I hope a good month for us all . IF ...........I can get some photos sorted out with Mark I'll stick then on a link for you to follow for Hogwarts when the event has finished . I did send some pictures of us all to our own Dinet photo section about a month ago , but alas they have not been added to the site yet . Look after yourselves all and hope to speak to you all soon ......Ami
  22. Some of you may remember my school friend Karen who I found after 40 + years of searching and I went to visit her on her 50Th birthday a few yaers ago. A few days ago after illness Karen lost her beloved mum , a mum who had shown me nothing but care and kindness all the years I had known her even though I was not a memeber of her family , a mum who knew of my pain and heartache and who took me under her protective wing without Karen or her brothers and sisters knowning and who I will be eternally grateful to. So Karen this is for you ..................... When words fail to ease the pain you are going though. When silence makes the empty space seem vast, When loneliness is the only voice that?s guiding you, And all the memories feel like knives and broken glass. Though your families love takes way the jagged edges Making the coldness feel a little less like ice Nothing really touches that very heart of you, For all around you is a sad and empty life. There will be times you wish that you could go with her To leave this world and be completely free When all you see is fear and utter darkness, Then turn to me, just turn to me. I will be the light that leads you to the sunshine, The strength you need to start another day, The hope that brings back loving memories The hand you hold to face all in your way. My friend??. time and space has no boundaries for us We are one that stands together to the last, For each life we lead is entwined to one anothers, To our future, for the present and from our past. Copyright : A-N-A May 2009. Ami xxxxxxxxxxxxxxxxxxxxxx
  23. Hello Griffin and welcome to the site. I spent from the age of 14 until I was 48 trying to get a correct diagnosis and in the end it was by sheer chance that i did and boy of boy was the consultant happy when the TTT came up 100% as POTS. I have spent months in various hospitals being treated for things that have nothing to do with POTS, been given the wrong drugs, been called crazy ............ well my hubby and son may agree with this diagnosis as I'm always happy and singing and up to something which for someone who gets a h**l of a lot of pain is not normal apparently When my son was just 4 years old I saw the signs of POTS in him , but it has taken me 14 years to actually get his diagnosed !!!!!!!!!!!!!!!!! When we found a POTS consultant down in Devon last October , son and I went to see him , he asked Mike why he had come ..............isn't this a stupid question sometimes I want to shout at these doctors who ask this .................to sit and talk rubbish to you ! Anyhow Mike in all his innocence just blurted out ' I have POTS ' and you can imagine what this big consultant said ..................'Its up to me to tell you what you have , if you have anything at all son ' Three weeks later he retraced his statement as Mike's TTT was so bad his heart stopped on the table and the cardiologist who was there with some of her team was tottally and utterly shocked as she had never seen anyone do this before with just tipping them up and down ! I dont see any consultants now as ';m sick and tired of them , I feel that everyone I go and see I seem to spend my time teaching them about POTS as I have more knowledge of the illness than any of them , any drugs or problems I have I sort out with my two local GP's who I made it there job to find out as much as they can about POTS and if I ask for a different drug or increase they know that I have looked this up, researched it and then I place all of the facts in front of them , we discuss the drug and the problems that I may or may not have and then normally I get what I need . So far in all the last 9 years I've had not one problem drug wise ( unlike when I was under the hospital ) and my local GP will drop everything including a full surgery to come out to em if I have a bad attack , which for me living in an isolated village is total commitment to your patients. This GP also looks after Mike, and his condition is getting more under control but he's been very ,low this past two-three months , which is why we are getting an animal ( two in fact ) for him as he's spent rather a lot of time in bed this last week or so with such exhaustion he just cannot stay awake and at 18 years old now going to bed at 7 pm when all your mates are out on the town boozing the night away chancing girls , neither Mike or I can drink and as for chancing .............well thats only sheep in his dreams poor lad . If you want to talk about anything drop me a message and if you live anywhere near the West Country OMG that would be just brilliant as we are very few and far between with the POTS condition down here. Regards to you and your family Ami xxxxxxxxx
  24. OMG Thankful what an awful thing to happen to your mum, the trouble is when you take a cat that is from one of the animal rescue centres they try to ship them in and out so fast that they never really know if a cat has a problem or not . When Riley was found abandoned tied to the gates of the rescue centre , left there overnight so no one would know who owned him ( disgraceful behaviour ) he was seen by the vet and had his head x-ray , they said that he was also covered in small cuts and scratches ( but we could see no scars or any sign of these ) and that his coat was in poor condition , yet when we took him just 18 days after being abandoned he looked in excellent condition except for his eye. The people who run and work in these centres I admit really do a good job , BUT they are only there from around 8 am until 5 pm each day and dont see what the animals do at night or how they react to things like that . Sophie and Harley have been with this cat animal rescue home for over 2 months , the lady who runs this small rescue home has only two expectant mums in her home at any one time and they live in her home , one mum in the downstairs study and one in the playroom. Louise attends the cats and kittens 24 /7 , she feeds them , cleans them and helps the mums give birth as well as take such good care of each and every kitten . She pays for all the vaccinations and all the operations for both male and females to make sure no other kittens can be produced, even when we take Harley at just 10 weeks , when he is six months old his vet bill has already been paid for us to take him for his 'De-doodling ' as we like to call it Louise spent a good hour and a half talking to all of us about the kittens and what we do , our home , any other pets we have had and only if she is 100% satisfied that you will give one ....two or however many you wanted of the kittens a good home , be loving and kind to them , only then will she let them go ..............BUT she brings them to your home and even at this point if she believes she has made the wrong decision she will not leave them with you . Most animal rescue centres do a home visit and just look around the house and garden ( 10 minutes in all) ask you to fill out a form and then discuss how much money you are going to give them you where lucky getting a voucher for another cat ............we got nothing except a scowl from the man who came to get Riley . When I spoke to Louise this morning she was over the moon that we had decided to take Sophie the mum as well as her baby Harley , she was very tearful in fact and then said it was really strange .............. Last night her friends who owns three Labradors dogs had called her and asked if they could have her , Louise knows these people very well and knows that the dogs love cats and wouldnt harm a hair on Sophie's head , but even though Louise was trying her hardest to re-home her she told her friends that she would call them today and let them know one way or the other . Anyhow at around 8 am the following morning she called her friends back and told them that she just didnt think Sophie would settle down as she had only ever lived with cats and didnt want her to try and run away because she couldnt settle ...........she told her friend that even though she may not get another offer of rehoming her for sometime she really believed that there was someone out there who was exactly right in every way for Sophie..............20 minutes later I called to tell her that we had all ( mark,Mike and I ) fallen in love with Sophie on the first night we'd seen her and would love her to come and live with us .....................Louise burst into tears and then said 'well I'd better find a home for her little kitten then ' ....................( she was talking about Harley) at this of course I shouted down the phone ....dont you dare , we want them both not just one ! All I can say is that all five of Sophie's little kittens now have loving homes along with herself and this is the very first time Louise has ever been able to home them all in just 10 days from first advertising to all gone ! boy is she a happy lady . I'm going to try and do a link from somewhere or try to upload the only photo we have so far of all five of the kittens ........OMG they are just sooooooooooooooooooo cute and if we could we'd have had the lot ! We will know later this weekend when the cats are coming as they have seen the vet today and Harley had his first vaccination , but Sophie has just only ( 4 days ago ) had her operation so she may have to wait a while until she's 100% fit and strong, OMG we are so excited , silly , crazy, stupid ...............but its like christmas here as we wait for the two new arrivals . The crazy lot from Plymouth .......Ami, Mark, Mike and soon to be Sophie and Harley .xxxxxxxxx I have linked this to the centre that Louise runs and the page that Sophie and her babies are on , Sophie is called Jenny in the photo and Harley is the kitten in the middle of the row..........cute or what ! http://www.littlebramblesguineapigrescue.c..._position=44:44
  25. And now an update on Riley...................... Riley isn't with us anymore and the animal rescue centre we purchased him off has been reported to the RSPCA Read on : When Riley arrived he was as good as gold, so clean with his litter tray , very friendly and in all a happy little chappy . We had talked at lenght to the rescue centre about his eye injury and they talk us that his eye looked bad but that it wasn't causing any pain and that may be in later years he might need it taken out , but that would be in many years to come , they said he had no other problems and we excepted this as fact . Mark, Mike and I had him out of his kennel about three times in all and he took to Mark like he'd known him all his life , everything was fine and he came home . The first week we expected him to be quiet and possibly follow us about until he got his bearings and felt safe , he came out into the garden on his body brace and lead and loved it . By day 10 he had started to talk ..........and I do mean talk very loudly and on and off day time . By day 12 he had stared to show signs of something wasn't right , we had noticed that when he came to sit on your lap that he would be fine for about 5-10 minutes then suddenly his head would 'twitch' and he'd leap of your lap and fly yo the front windows crying , over and over again he started to do this . I checked his eye and the surrounding areas and this was not causeing him any problems . ON the Sunday evening at 7 Pm her started to cry constantly , this increased to a wail and went on for hours and hours ........12 in fact I came down when Mark went to bed at 12 midnight and he was still walking up and won the lounge then charging at the front windows banging his head on then and at one point he was screaming ! I put soft music on and laid down on the settee trying to calm him ...............nope didnt work ...........I tried food, drink, cuddles, then braced him up and at 4 am I walked him up and down our road and into the church yard..........still crying constantly . By 5 am I was feeling unwell and decided to put Riley , his bed, toys, water and litter tray in Mikes lounge and leave him to it until the morning when I could call the vets. Mark got up at 7 am and when he saw wheat Riley had done he couldnt believe it .......he'd pulled down the curtain track and 2 heavy curtains in mikes room and somehow he must have fallen behind Mikes 18th Birthday flat screen TV as this was on the floor and had been broken along with the tray his water/food was on and he'd clawed at the settee and marked the walls............and escaped. We didnt have to search a lot as we could hear Riley screaming over the top of a pneumatic drill being used at the end of our road , 2 hours later we had trapped him and brought him back. I called the vets who agreed with em that Riley could possibly have Brain damaged from the head injury he had been brought in with as it would have taken some blow to make a cats eye go like it had and although the vet had X-ray his head they had not cat scanned it . I called the animal rescue home and all they said was they would come and collect him even after I had explain all about his screaming and head banging .........they turned up and got me to sign Riley over to them and then disappeared . I called the vet the next day to see what had been down only to find he hadn't seen the cat I called the rescue home and believe it or not ................HE HAD BEEN PUT BACK FOR RE-HOMING ' Mark, Mike AND I ARE SO ANGRY WITH THEM , I'VE NOW CALLED THEM THREE TIMES AND TRIED TO SPEAK TO THE MANAGER OF THE HOME BUT SHE'S ALWAYS NOT AVAILABLE AND THEY REALLY ARE NOT INTERESTED IN WHAT WE HAVE TO SAY ................ So I called the local RSPCA and reported the rescue centre for as far as we can see they are willing to let this cat go without giving it a proper check, over again by a vet and they have now put it back for re-homing even thought we have reported that it has a major health problem which needs sorting . All we can see happening is that another family comes along gets told its just a small eye injury , they take him home as we did .....fall in love with him as we all did , then discover he'd got major problems. It seems to me that the more people they get to take Riley on and then have to bring him back the more money they will make on him , we paid ?60 for him for under 2 weeks ............and its cost us over ?400 in damages so far !!!!!! Its not the household damaged I'm concerned about at all but Riley's health , is he in pain ?, can be see properly or is his vision so distorted he's scared ? , has he got a blood clot or is he bleeding from the pain ? The trouble is we aren't in a position to be able to afford to take him for a cat scan at the major Bristol vet hospital as this will cost us in the region of up to ?1,000 for the scan and board for him , something we didnt expect to have to pay after just 11 days of getting a cat !!! and the insurance I had on him doe not cover existing conditions . So at this time we are without a furry critter .................but in th next week we are going to be proud owners of not just a beautiful jet black 18 month old mum who looks like a siamese cat ( but black ) but we are also taking her last male kitten who we are going to call 'Harley' after the bike Harley Davidson . If you are thinking blimey thats quick ............we do have a reason for this , we need these animals for Mike as he is very down at the minute and we feel having a cat or cats about and having to look after them , feed and play with them etc will help to bring a smile back and give him something else to think about and enjoy , his POTS has been quite bad recently again and he's been so tired and having to stay in bed ...........so a 2 month old kitten flying about his bed and a wonderful sleek mum curling up with him we , as well as his doctors think will make a whole lot of difference to him . More to follow when the cats arrive next week. AMI ........Mark and Mike.
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