My life, my days

SEPTEMBER 2011

2011-10-03T08:03:00.000-07:00

SEPTEMBER 2011

Highlight this month was seeing my son get maried to Kim in Newcastle on the 3rd, it was a beautiful service which brought tears to my eyes, I know me getting all soppy. I used to wonder why people cried at weddings hought they were nuts bbut now I know why. Having to check ont hedogs back at our hotel we were a little late for the reception but all was okay ad nth eevenign party was great, got a dance with Brian my OH, we have been together 11 years and never shared a dance.. then I got a dance with Jamie and my brother Dave.
The following Monday 4th I had an appointment with my specialist, bit upset to find after 3 months he still hadn't started proceedings about tests for my possible lung transplant. All ok now though as have received a copy of the letter he has sent to Papworth Hospital in Cambridge. Now I just have to sit and wait to see what happens next.

Went to the Richmond dog show and Red qualified for Crufts having being placed 2nd, wasn't overall sure if he had already qualified previously but this time he definitely has. A bloke called Steve came 3rd which surprised me as he is a top breeder and show man and often gets placed 1st. So Red did really well today.Mind in the next class Red came 4th of 4 with the same judge, ah well still a great day.

Been having some Parelli lessosn with Liz Jones doing what I can which wasn't a lot but it was enough for me to practice and finally got my level 3 On Line audition recorded and posted (30th) onto You Tube. now just gotta wait to see how I done. Few days later I give Kim a riding lesson with Kyle but since then I have been realy ill, done too much again and finding it hard to sleep at night with coughing and also having a lot of pain in my neck and shoulders and lower back due to a whiplash accident 2 years ago. Talking of which I was offered a low amount and have decided to take it to court as I have suffered for a long time and still suffering.

On the 20th me and Brian went to see an alcapela group called the Magnets and they were great, well worth going to see.

Was meant to go to two other dog shows but jsut wasn't well enough to go, lost out on a lot of money as it cost to enter and it was staying overnight, still if I can't go then I can't go.

I have good and bad days thinking of possible outcomes of the lung transplant, so worrying and no one really to talk to.

Well that is all for this month

Ta ta for now.

August 2011

2011-09-01T14:37:00.000-07:00

Many changes since I last posted, though each day I wake up needing my nebuliser and painkillers due to pains and headaches most days stretch out quite comfortable, comfortable in the sense of being bearable. I can get around with the use of aids and my oxygen and of course my array of medication.
Recently I had a Macmillan niurse come and see me and discuss my symptoms and help me with exercises and give me support, let me talk which I find difficult. I wasa offered a new bed, it is like those in hospital but better, not only does it raise your upper body and / legs it also raises to about 4ft off the ground and.... tilts upright putting you in a standing position. It has a memory foam mattress and being a single bed I can get fab quilts having jsut bought teh Peppa Pig one.. yes you read right, Peppa Pig.. I aim to get Kitty and some horse ones.. no boring quilts for me now..

Besides the bed I also got a stairlift, got it ourselves as the council would not help, seemingly they decide on what you bring in to the home disregarding what you have to pay out. So even though we are skint we do not qualify for one. Really stupid when you think the charities got me a brand new bed that cost me nothing and... got me a second hand electric chair that looks brand new and gives me a new lease of life.

Each day I wake up wondering how I am gonna be, what am I gonna be able to cope with, little things like taking Jake and Red to the park is such a joy. I walk around th ehouse getting my keys for the mobility scooter, my hat, my ipod and headphones, water and of ocourse the dog treats. All the while Jake and Red are all excited knowing it is play time. I point to the stairs and immediately both boys leap up 3 ssteps so that I can put their Swarovski Collars on then its a scurry to see who gets tot ehscooter forst. Red, I pick him up and put him in the basket as its a tad to much for him to walk to the park and back. However Jake likes to tottle alongside, such an independant little chap who makes me smile with love every time I look at him. Heck don't get me wrong I love Red too, he is such a lad, looks all innocent and is my little rascal but hey he loves his ma and always wants a cuddle.

My horses, I see them as often as I can but not as often as I would like, last week (its 1st September now) I actually felt well enough to have a little ride on Spike with Kim riding Kyle. That little eride turned out a little loinger that first intended but boy did it feel good. It rained and we got soaked but my heart beat with sunshine all the time. I knew it would mean bad days later but at the time I didn't care, however the days following I was so ill I could barely move, I felt so ill, weak, dizzy, tired, could barely move without my legs near on giving way, constantly coughing and being sick, really bad pains and so unfocused. I basically slept during the day as I kept myself awake mos tth enights coughing. Funny thing was after the ride I arranged to do it again this Thursday (which is today) but I just knew I could not manage it, I even have to forget about a dog show I was entered in with Red at Birningham tomorrow. Though I feel a lot better in comparrison to the last week I know going will make me ill over the weekend and I can't risk that.
Why ever not ... well its my son's wedding on Saturday and nothing is keeping me away, I am so excited to be going.

Brian hasa poffered to buy me a dress so on Friday when he gets home from work he is taking me shopping. I hope I find something nice. I can't wear anything I already have, not a skirt or dress as my stomach has swelled.
That's another worry, I dunno if its because I can't exercise or not but my stomach has swollen quite a bit and even if I loose weight my stomach does not shift, I hear and read stories about water retention, cysts, cancer etc and worry, not like I have enough to worry about anyway.

My worries, jeez I do have bad days, I can be out with the dogs enjoying myself watching them run around playing and suddenly it hits me, how long do I have to watch my dogs out playing in the park, seeing my horses grazing lazily in the sun, speaking to friends and family, then the tears come as I think the wot ifs of the operation itself.. How many years have I took life for granted, took people for granted even my pets. Yes I love them all but only now do I realise just how much I need them.

August has been a hard month, I am to see my specialist on the 5th September, no idea what is going to be discused as though it has been 3 months since I last saw him I have not had one letter regards any tests. I shouldn't think about things like this or write them as I just get upset. I am typing through a mist of tears now so its time to stop.
But before I go, if you have just had an argument, said some unkind words, think back, were they really needed, was the issue such an issue. Do you have a relative or a friend you keep meaning to phone, don't wait, go and make that call now.

Till I see you again

Love always

Dawn x

Trailer Stolen - amazing outcome

2011-07-13T07:45:00.000-07:00

On Monday 11th at 10.30pm I received a phone call from the yard owner of the stables to say my Horse Trailer had been stolen. I immediately told Brian adn we set off to the yard to discover the quad bike had also been taken. I phoned the YO to say we were on our way and she told us that her daughter's partner had been down and saw his flat bed trailer with our quad dumped at the side of the road about 1/2 mile from the yard.
On arriving we saw the quad and a passing car driver stopped and helped us get the quad back to the yard, luckiky it had not been damaged though the trailer was in bits. The reason they left the quad is because it was secured to the trailer with anti bolt cutter devices. How they even gotit as far as they did baffles us as they had no key and it had not been hot wired.

So we arrived at the yard and yep it was definitely our trailer that was taken. We had it boxed in with another trailer and a car and it had a high security wheel lock fitted but they still managed to get it.

Now the amazing story starts,

First of all the farmer next door seen two suspicious men late at night lying on the grass, he got in his car and went to check his premises and cattle, that was when he saw our trailer being towed away, he followed them while phoning the police... (What if he hadn't of looked out of his window and seen those men, what if he'd not bothered to phone our YO and what if the YO waited till later to phone us),
Then while my partner was on the phone to the police another officer sitting next to her overheard the conversation, he was watching another incident in Northampton when sudenly he saw our trailer beign driven on his monitor (what if we'd phoned the police earlier or later and as the trailer was seen for only a few seconds what if the officer had not have looked up when he did)
The officer immediately called the partols in the area and the thief was caught, the car used was stolen adn the side of it and the jockey door on our trailer was all scraped as the lad tried to drive through a gap that was too narrow. The wheel arch on our trailer was also bent from when they broke the wheel clamp off.
Seemingly a gang was seen at the yard but only one person was caught so I am assumming the rest fled and left the one lad to take the rap, ha who needs mates like that. So many things happened to night that I now truely believe it was fate,
So now the trailer is being held for finger prints thought the police say they have loads of evidence stacked against the lad but the finger printing is a bonus should they need it.
I have just ordered a new wheel clamp the Bulldog Centaur and the heavy duty Bull dog hitch lock at a cost of £268, I am hoping the insurance will cover it as they are looking into it but heck the lad should have to pay for all damages, he is probably a re-offender and being locked up is likely a holiday for him. The courts could pay the victim and then the offender have to pay back to the courts. If they did this and made them pay they may think twice about offending again.
I wish I could meet the lad and give him a good whollaping ... where it hurts,, the rotten smelly jingle balls.
So pleased to have my trailer back but more pleased they caught the low life.

A Shocking Tribulation

2011-07-12T05:49:00.000-07:00

On Monday 13th June I went to see my specialist Dr Jeffery regarding my lung condition, Dr Jeffery is usually relaxed and smiling but today he was serious and to the point. He said to me that he had been looking at my notes quite intensely and that since December my condition has deteriated as a fast rate and it has got to the point where he can no longer treat the cause only the symptoms.
As he was talking I noticed an image on his monitor and asked what it was. The image was of my lungs, imagine a plate approx 5" in diameter and place a 10 pence piece on it, this 10 pence piece was all that was left that was healthy, the rest of the lung was damaged, to say I was shocked is an understatelment but it made me realise the extent of how bad my lungs where and why I was having more difficulties.

Dr Jeffery then went on to tell me that my lungs will continue to deteriorate to the point where I will die from the condition, I was then told Icould have anything from a few years to 5 or more but he could not give me a a definite time scale.

Dr Jeffery then told me that the only other option was a lung transplant, this could be a single lung or a two. Having a single transplant may not work as the other bad lung could attack the healthy lung and destroy it. I will need a series of tests and once they are completed then the team will decide if I am a suitable for the transplant. They may say I am not ill enough or too ill and to be refered again in 6 months. Otherwise if they give the go ahead then they need to decide on a single or double transplant.

If that is not bad enough then this next news shocked me even more, due to the complexity of my condition teh operation give me a 1 in 8 chance of surviving the operation. So basically I die if I don't have the operation and could die if I do. I was told to go and give myself at least a week to think things over. My decision ws to go head as I could always back out later whereas if I don't go on the list and decide to later then I have wasted time.

So now I am waiitng to hear when my first tests are to be and currently get around with a wheelchair though for very short distances I can use a cane but I do need oxygen 24/7 which is a pain.

It takes very little for me to get breathless and I have little muscle strength so if I bend down I really struggle to get up, Life has changed so much fo rme in such a short time but I have to get on with it. I have my dogs which give me reason to get up and occasionally I get to see my horses.
I don't ride or do anything with the horses now but hopefully the transplant goes ahead with no complications and I get some quality of life back.

Unexpected Happenings

2011-03-19T04:18:00.000-07:00

Okay I had increased my steroids to 40mg a day yet I was still struggling to breathe and getting exhausted doing the least thing. After 3 weeks of this I got to see my consultant who suggested being admitted into hospital, well of course I said no but I did go for an x-ray. This was on the Thursday and by Sunday I was .. yep you guessed it.. in hospital. I got pains in my chest, shoulder and arm which got so bad I was in agony. By the time the paramedics arrived I was in a critical state and at hospital further x-rays showed a... oh no not that.. pneumothorax. So after a few attempts, lots of pain and bringing up mouthfulls of blood a chest drain was finally inserted.
Now I am expecting 2 days and I will be home, nope two weeks later the drain was taken out but my lung collapsed again so another drain had to be inserted. this took another few attempts then it was found the drain was not in correctly so it was removed again and another inserted. So with 8 atttempts of putting in 3 drains my lungs were pretty sore and then I got a really bad infection on the drain area and on my chest. the drain got infected as staff did not change the dressing and it just got really bad. Things were terrible in hospital, left for 2hrs in excruciating pain, antibitotics missed as well as important injections. no results of Scans, Echo's etc would be given and no one would keep me informed of what was going on. Had two days of physio which was temporarily stopped due to chest pains then nothing and no one bothered to reinstate the therapy once I was well enough again. And boy forget about hospital meals being bland and tasteless, every meal for 4 weeks was wrong, cold or only parts of the meal given, complained and for 4 days all was fine then it started again. In 3 months I got the right meal about 10 times. pretty bad considering you get 2 meals a day (not counting breakfast).
Then a nurse did somehting that could have killed me, I was lucky that I only sufffered about 3 hrs of bad chest pains, nause and dizziness. The nurse is under investigation as I put in a formal complaint and it was revealed to me how negligent and abusive she has been with other patients. I say Iwas lucky as I never died.

My discharge, what a joke, I must have spent about 3 weeks longer in hospital purely because no one spoke to each other. Brian finally got everyone together (Consultant, OT, ICT, Physiotherapists, Doctor
, nurse, me, and him) in a meeting and a week later I Escaped....
Now at home and on so many tablets its a joke, have the care team come every morning to help me, they did come on an afternoon but for me it was so inconvenient that I stopped it. I also have a nurse come to flush my hickman line and check my dressings and the physio come every so often to give me exercises to do.

I haven't seen the horses since the 12th December and I miss them loads but the dogs keep me company which is great. had to cancel a beach ride but do have some one day dog shows I can go to so hopefully I am off the oxygen by then. Oh did I not mention the oxygen.. I am on 24/7 oxygen which is a pain and if I go out to Tesco's or anything I have to use a wheelchair and a portable oxygen tank and Brian pushes me around. I also can't manage stairs that well so for the past 3 weeks I have been sleeping downstairs on the small bed.
So to date, still got the Hickman Line to my heart inside me, stuck in the house unless Brian takes me out, trying to get off the oxygen, trying to remember to do my exercises and eager to get back to some sort of normality.

Things can only get better... :-)

Bringing things up to date

2010-10-23T10:18:00.000-07:00

Started taking Red to ringcraft so I can learn how to show him for when I start taking him to the big shows. As for me I am still taking painkillers but not morphine but the painkillers only help so much. It really gets me down and everyday I don't get any rest, even nights I am tossing and turning and always wake up needing pain relief.
So many hospital appointments behind me and many more to come and one appointment was unexpected as my l ung specialist sent me for some pain relief.. ouch that was agony.. and I got no pain relief, what I did get was more pain for the following 4 days. Not having no needle stuck into my ribs again. Had an appointment with the physio but she said she could not give me any exercises until my pain was sorted out... another set back.

Ran a course organised for 3 days with a Parelli Instructor and though I was meant to participate with Spike I couldn't and spectated instead but did go for the meal that was arranged. Great venue, great food and exceptional company.
Still not rode or played with the horses even though I have bought Spike a new saddle, when I get to sit in it is another matter.
Managed to go to a few local shows with the dogs as I need some stimuli, being in the house all day is mind boggling and getting out even for a short time helps, even if it does mean I suffer later.

Who went to the Horse Gala? me and Dawn Amour did and we had a fab time, even if we did venture into the mens toilets by mistake... ooh how embarrassing.. but was good to laugh about it later.

Finally got to talk to my dad, he is in a housing shelter while a new Bathroom and Kitchen is fitted but the shelter staff are hopeless, NEVER return calls and when I phoned they were either already on the phone or I was just put through to the answer machine. So yesterday 22nd Sept I finally got to talk to dad. So pleasaed to hear his voice.

So to date I am still in a lot of pain, trying to manage each day and night, enjoying my animals company and taking each day as it comes.

Aches and Pains

2010-08-14T06:00:00.000-07:00

Spent last night with a lot of pain in my side under my armpit, every time I coughed the pain was unbearable and I coughed quite a bit last night due to my lungs.
Woke up this morning and now the pain was there continuously, and it hurt really hurt. It felt like broken ribs and every movement is agony. I also find it hard to breathe and all the coughing has given me a horrendous bad head. I had the morphine patch on for my back but it wasn't helping and so took some high strength Co-Codomol. Didn't work either so thought,, hang a mo, the Tens machine.. that is for pain so I attached that and an hour later the pain has reduced quite a bit. The bad headaches are gone and the pain in my side only remninds me its there when I cough.
Not going to the horses today, the YO is gonna see to them for me. Did some practice of standing and walking with the lead with Red and some confidence exercises. Now gotta rest up as I feel exhausted.

ECG Monitors

2010-08-11T02:56:00.000-07:00

I had an ECG monitor fitted which I had to wear for 24hrs but seemingly it didn't record everything so had to have aother fitted and guess what.. today for about 10 seconds one of thew wires came off. I am sooo hoping it doesn't mean I have to do it again as its uncomfortable and I can't have a bath or shower with it on... Also had the strenght of my morphine patches increased and they are helping now which is good.

Morphine and Tens

2010-08-08T03:06:00.000-07:00

Went to see my specialist Dr Jeffery and he has put me on Morphine patches and a Tens machine, both to try and help with the pain in my back. I now also have to have another ECG over 24 hours as seemingly the last one didn't record info for the entire time. Still I get to cuddle my two dogs all day which is a bonus.

I knew I shouldn't have done it .. but I did

2010-07-21T02:28:00.000-07:00

Yesterday I went to Tesco's to buy a wrap for lunch and also bought a bag a sweets and a cream cake, I got back to the house and ate the lot. Groan.. it's teenagers that do that. So the inevitable bought of nausea followed and I felt so sick.
Went to bed, took 2 painkillers for my back that didn't work so took another two and it was still the early hours before I fell alseep. Whether that was coz I was relieved of the pain or just so tired I dunno. Shared the night with Jake who as always was a great comfort.

Argumentive over nothing

2010-07-18T11:16:00.000-07:00

No one else to talk to so I am gonna rant on here instead.

Okay Brian used to leave the loo unflushed after a poo 3-4 times a week which I find disgusting and trampy. After many an argument over this, as he'd say he wasn't bothered about flushing properly... ugh!! he finally stopped, well reduced it qyuite a bit.. However today he did it again and all I said was "Oh Brian" I did not want to stand in a toilet room with a bowl ful of his poo and believe me its full... So I went upstairs, my choice.. So I come down to him shouting at me as to why I couldn't flush it... why should I, all that will do is enocurage to leave more and more of these episodes. I said "Does it really interfere in your life" so he said yes it did,, my god,, flushing his shite away is gonna distrupt his life....

Then he starts nit picking getting more and more argumentive and bad tempered... and in temper kicked Jake's little toy duck... oh how macho.... I think it is an excuse to cause a bad argument so he feels less guilty about going away all next week. He says he's going to watch his sons play croquet all week in Nottingham but then when he had his sleezy affair with prostitutes for two years it was photography. So has it gone to being called photography to croquet now...

Oh and guess what, when we finished the electric fencing yesterday I put some short bits of wire into a tub, that now means I dictate where everything at the stables has got to go. I've told him to F***.*ff not nice language I know but he is soooo childish and pathetic. He just said okay and went off in a mood so I guess that is another excuse why he can go and visit slags.

Feeling so ill today

2010-07-18T06:43:00.000-07:00

Woke up this morning in so much pain I've decided I need to buy something that will give my back more support at night. It don't help either that I feel like I am gonna throw up every time I move and any slight movement I do make has the room spinning.
Brian has suggested I ask the doctor for more morphine as the strong painkillers I am on today didn't help all that much and I took 4 within an hour.
It also don't help that I seen to the horses yesterday and the little I did was still too much. I have a blog about my days with my horses at My Horsemanship Journey
Its 2.45pm and allI have managed to eat all day is a small slice of toast.. I have some indian curry from yesterday but not sure if I can stomach that now... and I love a good Chicken and Mushroom Biriany...

Spinal Operation

2010-07-16T12:39:00.001-07:00

Monday 14th June was a day I never expected, the last I recall it was around 11am ish and I was doing some cleaning in the bedroom, next thing I know I wake up approx 2 hrs later in agony. I am alone in the house and the pain in my back is so intense I can only shuffle backwards. I somehow managed to get downstairs and call 999, I don't recall opening the door as I came downstairs but I must have as the paramdics came in and helped me.
Here's me thinking it was another collapsed lung due to the immense pain in my back but xrays that day rulked that out.
Tuesday after a CT scan it was discovered I'd crushed 2 vertebrae meaning I needed an operation on my spine. All this time I'm worried about my dog Jake and the horses but Brian is there to see to Jake and he contacted the yard owner to see to the the horses.
A week later on Monday 21st I had my operation, I was petrified as I'd been given the usual talk about possible risks and it scared the hell out of me. But I'm still here and the operation went well.

Now its Friday 16th July, every morning I wake in pain after a restless and painful night.. I get a little relief with painkillers and some days are worse than others. I am needing a walking stick to help get around as walking is painful. Hospital appointments are plentiful and so far I've had 2 with about another 6 to go to try and find out why I collapsed in the first place.

So how am I feeling? Lonely, lost, depressed, sad, yes I feel all those enotions, I miss my dad, my son Jamie and some members of my family, being 240 miles away from them all is no help.

So how do I get through each day.. Jake that's how... having had an operation himself he is my saviour.. He comes and curls up next to me, sometimes he plays rough sometimes he just wants to cuddle in...