Fear

Unfortunatly things still havnt improved the way nyself and my CPN would have liked. I have had HTT (Home Treatment Team) visiting me at home every other day to also try and get me extra support through this difficult period of my life again. I just cant seem to get my head around everything that is going on, i cant seen to accept the deterioration nor the fact i am never going to be the same again. My bigget fear is being readmitted to a secure mental health unit but equally i knot that there becomes a stage where i have no say in whether i stay at home or get admitted. Everyday that HTT came to visit they kept hinting towards an admission and as of late so has my CPN. They have both bow decided to do a joint visit this Thursday as they have been discussing me and now what to tell me their plans. I cant help the way i feel. I cant help being depressed. I cant help feeling dissconnecred from my body. This isnt the way i wanted my life to be, its how my life choose to be and unfortunatly its not something that i myself is going to change on my own. The last two weeks have literally mimiced to how i was in January and February time and that ultimately led me to the admission in the first place so i guess you can understand why im worried. I could lie, say everything is better. I have no suicidal ideation at all anymore but then i would be left with no support. No one would trust me with what i said in the future and then equally i could be making things worse for myself. Mental health is more confusing than my physical health. We shall see by Friday hey!! TTFN XXXX

Severe PTSD

Following my disagnosis last January I have been really struggling to actually get the therapy I need. Firstly nobody wanted to take actual responsibility for it so nobody actually wanted to start the treatment. I am guessing because of funding.

Well last Monday I finally got my first session of treatment. Its called Eye Movemrnt Therapy.

Basically my consultant gets me to follow and object for a certain number of repetetive movements over a period of time.

Sadly I cant go into much more detail other than to tell you it went ok. It has something to do with the way the treatment works.

My consultant told me that I would be sleepy and that i must go home to sleep. Unfortunatly my other half wanted to see her mum on the way home so that didnt happen. As a result I became an emotional wreck. Not realising its because of the treatment I literally couldnt do anything without crying, thinking i was a failure or wanting to kill myself again. I just didnt know what to do and to be honest im now not looking forward to this weeks treatment on Monday.

I know i have to be honest with my Consultant though and I have to tell him exactly how i felt else it could be completly pointless me continuing this.

I just hope it starts to work. I know each time my asthma flares I will need treatment for my PTSD but i guess this is just another one of those diagnosis im going to have to deal with long term.

TTFN

XXXX

Bones!! I Guess We Need Them

A few months back if you remember I told you a breif bit about my hip being crap and causing a lot of pain. I mad an MRI scan with Dye to try and figure out what was wrong following a steroid injection in theatre that didnt work. The scan showed that I had A labral tear that needed fixing. My current consultant was in Musgrove because of living in Somerset when I was refered there. They told me that they only do open surgery there. As i was now a resident of Cornwall they said they would transfer my care to a Consultant in St Austell because he can do the surgery via key whole. Perfect. Figured all i would need was a little hole being stitch up and on I go.

I had a consultation with him to which he asked me what it was I knew about me him to which i told him what I just told you. But he told me to wait there because it wasmmore complex than that. Wait what I never got told this. Why is this new to me!? He told me a breif outline about my hips not being thw right way. He thought at the time it was my sockets that was backwards so he done an xray on the day which showed my femurs sitting inside my pelvis which in itself isnt right. As these results werebt good he requested an urgent CT scan as noone seems to have wanted one of them yet.

Inwas supposed to get these result 5 weeks ago but he rang to cancel because he didnt have all the results back.

I finally got the appointment to go today at 0940.

I took my other half with me as its only fair that she knew what was going on and i figured that the consultant would be able to explain it easier than me.

So clinic. We sat down and to be honest i was shitting myself. I was mega scared but didnt show it because i didnt want to worry my other half.

He pulled up my CT scans (which might i add was bloody amazing) and showed us the results. Firstly he apologised because he said it was more severe than what he first thought and told me. So whereas we thought i just had the tear and high sittong femurs it turns out ive got:

A lip of overgrown bone at the back of the ball head of my femur which is causing the ball to catch on the socket which in turn is causing my hip to pop out of place multiple times a day.

I next got told that my ball itself is facing the wrong way by 15degrees which is why i cant put my legs into certain positions and why when i sit certain ways my right leg is shorter than my right because as its rotating its rotating the wrong way.

As all this was supposed to be found when i was a child and fixed it has now caused severe artheritis in my hip because of all the damage.

The consultant has stated he has never seen this extent of damage and mis growth in someone of my age. Great.

I will need surgery i cant be like this.

He said he will focus on my right him first as it is causing the most pain and once the right side has healed he will move onto my left hip.

So, the surgery, the first stage we are trying under spinal block a key hole procedure to which he will scrap away the lip of overgrown bone and hopefully get a better picture of the artheritis and try and sort it out abit. If this doesnt really do much it then leads us to stage 2 of the surgery. This is even more major surgery than before and i will need a general to sedate me. During this procedure he will break my femur in half and will take the top half of the femur out, rotate it by hand to the position it should b and then re put it back into the socket and reattach everything. The 3rd stage in many many ears to come is total hip replacement which the artheritis will cause.
Like i say once the right side is done i will then need all of this on my left.

What pisses me off the most is the fact that not only was this ignored throughout my whole childhood but for the last 2 years ive been told constantly that the pain is psychological and that theres actually not anything wrong. As a result of their neglegence i am now suffering the consequences and getting chronic pain and needing major surgery twice over.

I dont understand how our lives can be so miss treated through the hands of people we are supposed to trust.

Its shocking and shouldnt be allowed.

TTFN

XXXX

Bloody Council

Today was the day that i was getting arsy with the council if they hadnt started responding to me with answers about whats happening with us with regards to being rehomes.

By about 11am i had a phone, when they said it was the council i was think; great about bloody time...boy wasnt i mistaken. It was the council saying that they wont accept the paperwork that got sent to them last week by the homeless team. As always i questioned why and blinking heck it made me boil and they certainly knew about it. The reason the wont accept it is because we "just have asthma and just have depression" so it doesnt make us a priority and they more than likely wont get us a home by the 6th of October. By this point i was near on screaming down the phone asking if there was medical professionals on the panel, and guess what, there isnt. Finding out this then made me scream at her about how would they know what my BRITTLE asthma was like and what my SEVERE PTSD and my other halfs SEVERE DEPRESSION AND ANXIETY was like. I asked her if she was one of the panels members to which she said yes, so my next question was, have u ever heard of proximal myopathy and know what it does...and guess what, her answer was no. So i told her we should not all be tarred with the same brush, for one BRITTLE asthma is nowhere near anything like WORK RELATED asthma.

So all in all, myself and my girlfriend wont be getting a home by the 6th October and despite the fact im on higher rate DLA for both componants and the support section of ESA,  it means nothing because our illnessesare basic.

We then thought find, screw you council will go private...but wait...we cant. Because we dont work, wet need a guarantor and we dont have one.

All in alm we are fucked!!!!!!!!!!!

TTFN

XXXX

Worried

Today i learnt that a very good friend of mine is extremly poorly and as we speak shes being transfered to a different hospital to get a different level of care.

Its very touch and go.

Weve been told shes at a critical stage and without this much needed operation theres a very high chance she wont survive.

Im scared. Shes been an amazing friend. Yes weve never met but we email a fair few times a week and i feel like ive known her for years.

Im currently being updated by another friend of hers and i really feel for her as she just doesnt know what to do and im angry with myself for not living closer to be able to help.

My otherhalf keeps saying to me, let me know if u want a hug or if you get to sad but i just cant bring myself to show her me being weak. Weve got to much to do and fight for.

All i know is, my friend MUST pull through, i need her!!

TTFN

XXXX

Deflation

I couldnt blog yesterday after my clinic appointment because I was still trying to get my head around things.

Basically, in short, the tests my respiratory and immunology consultant have ran these past 8 months have shown that I was born with an abnormal immune system. As a result, because it has been undiagnosed for so long ive now got to the point i have no immune system which explains why im getting so many infections and also taking so long for things to heel. Ive got an appointment now on the 9th September with the immunologist because they want me to have atleast a years worth of IvIg infusions which is in theory a home grown immune system put through an IV drip and pumped into my body. Ill be asking whether this can be done at home and that myself and my partner can be taught to do it as these i fusions could possible be 2 weekly and i really dont want to be driving to plymouth each time which is just under an hour away from my home.

My respiratory consultant has also explained that this problem with my immune system is whats causing me to be both anemic and also have a critically low phosphate. He also explained that it is the cause for my oxygen levels to constantly drop at night. Although this is great news to hear, there is also a frustraiting element. He wont treat any of this for the long term as they wouldnt know if the infusions are having an impact. So i have to have atletast another year of intense migraines every morning whicb im a little miffed about.

After such a stressful and brain wrenching appointment followed by more blood needing to be taken, idecided i needed crap food to eat ha. Myself and my partner know of this amazing american food place in plymouth called goodbodys so we went there. We shared a death by chocolate milkshake which was monster size and is roughly 3 pints worth of drink in one. My partner then had an american breakfast and i had twister fries with cheese and also an american pancake with ice cream and nutella. Yum. Definatly hit the spot.

Today has been yet another shit day.

We woke up and i really didnt want to get out of bed as i was hurting and my muscles were weak from driving yesterday so my girlfriend went and made breakfast for us and we had it in bed. Although staying in bed didnt last long as it turns out that when my girlfriend went down stairs her parents staryed on her again and startted slagging me off big time so i needed to get out the house. We ate, got dressed, got dixie ready and just left. I just want to cry. Ive never been made to feel so shit before, and this time it was all over a bike to which my girlfriends dad then chucked at her that she shouldnt be riding a bike anyway as itll do her lady garden no good (shes got really bad problems with allergies there) i of course have no idea why riding a bike would cause a reaction. I decided it was yet another dig at her trying her bloody hardest to try and loose weight and its disgusting.

To top today off, just as we were leaving, i was stood by my car trying to get the wasps off my door as im allergic to them and a woman comes speeding around the corner and nearly knocks me over. As a result i shook my head a sheer shock as its a 30mph zone. This woman suddenly slams on her breaks, gets out the car and staryts screaming in my face waving her fists round my face. I ofcourse wasnt bothered. If she hit me fine, ill get her arrested. Weirdly, and neitther me or my girflriend dont know why but when she was leaving she shouted at me "go and get urself a road"...funnily enough we are still confuzzled by this comment.
Thankfully there was a witness to which at the time we didnt know about but it was our neighbour up the road that saw everything so if she did hit me, atleast i would have been backed up. He was so worried that the woman was going to run me over.

Oh, one last thing, similar to last December when i had a benign tumor grow on my lip, ive now grown something very similar on the underneath of my tongue. The lump is roughly 1.5cm in width and 3cm long and it is thicker than the size of my tongue which u can imagine is a royal pain in the rear. I cant talk or eat properly now. Im desperatly trying to get hold of the maxifacial surgeon that sorted my last lump as i trust him and no how supportive and helpful he is. Will update u more on this situation as soon as i know more

TTFN

XXXX

Good vs Bad

Firstly yesterday. Bloody hell I was a right state. My partner was at the gym and i decided it would be a great idea to take our puppy for a walk. All was going well untill we got to a walkway that ran alongside a railway track. At the point of us getting to the track a steam train went by. Our puppy decided it was a great idea to try and chase it. So running as fast as she could her lead stretched as far as possible causing me to be pulled and i fell over which somehow caused her lead to unhook from her harness and she was gone. Because of my asthma and muscles disease i couldnt get to her. A well, undisabled person would of been able to chase their puppy and get them back but for me i couldnt. Plus i was super hurting from falling. At the end of the lane there was a cross roads that led to a road so i had every thought going through my head. I even had it that she had got onto the train track.

I rang the police and the wouldnt help, they told me to ring the non emergency police to which i done...once i got through they refused to help me and told me the emergency services shouldnt have told me to ring them. He told me to ring the council to get the dog warden. Once i got through to them (25minutes later) all they done was take my details just incase someone found her.

Thankfully a fellow dog walker saw me in a complete state and went hunting for her. She also gave me tasks to do whilst i stayed put just incase our puppy came back. I put a shout out on fb, i also rang to local radion and they also done a shout out for us and we rang around the local vets.

2 hours later i had a missed call and a man slowly drove past me asking for a street. That street being where i lived and as soon as i started talking, my voice must of been recognised as next thing i know my puppy jumped up in the back of his carmand went mental for me. (I didnt see her straight away as i was on the floor). The extremely kind man found her about a mile away looking like she was running away from something. I hate to think what was going through her head. As all i know is i was stressed, devestated and in a right straight. Its like a part of my heart had been taken out. Once home and since yesterday, our puppy has been super clingy and wont be in a room on her own so is following us everywhere.

Thanks to the pure kidness of some local people, we have our little pup back but i still keep thinking of the worse...

In good news though, i had a letter through the post today, and i was dreading it as there was a stamp on the front from the muscular dystrophy campaign.

I opened it up think the worst and that they wouldnt consider my application for a grant to get a mobility scooter because of the lack of evidence BUT they stated that theyve reviewed me as an emergency case and have granted me the top amount of £1000 to get the scooter that i had qouted for me as it was made specificly for me. All i need now is to get a further grant of £249 and the scooter have been paid in full so if anyone knows of a great charity that would be able to help me then please let me know...who knows, having this scooter could of prevented me from falling yesterday meaning our puppy wouldnt have gone missing

TTFN

XXXX

Frown Isnt Upside Down!!

Ok so im still strunning to see light at the end of the tunnel.

Everytime i think something fantastic is happening, I get knocked back down!!

I had the doc ring me up on Thursday because it seems we are having the same battle as last time for keeping my aminophylline levels up so i am now on 600mg a day to see if that does the trick.

Today my other halfs sister arrived back in the UK after a week abroad on holiday...next thing we know weve got a text stating they have our invitation and she then starts getting nasty that weve not invited them to the ceremony. 10 minutes later i get a facebook message from her girlfriend saying shes not coming to the meal weve invited to because she cant see the justification in taking time off work to come down for a meal they have to pay for, so i reminded her that there doesnt need to be a justification, we just wanted our family to celebrate our day with us...i guess for some thats a hard concept to grasp!? I wonder if i could tell them that i dont see the justification in doing their wedding photography for their wedding next june!? I wont because im not nasty. I want to be there for their big day even though it means travelling 300miles and 4 hours to get there, then paying out for a hotel and then travelling back...never mind the fact that i am disabled and struggle to drive 20 minutes!!

Anyway, rant over for now.

In other news, im a little concerned about my muscles. To those that dont know, ive been diagnosed with proximal myopathy which basically is a muscle wasting illness from being on long term steroids for my asthma. Its now getting to the point that im struggling to hold my head up, my neck musclsa are really starting to struggle and im having to wrap my V pillow over my shoulders and under my head to support myself. This is the last thing i want. This is another kick in the teeth for being disabled. I know my consultants had warned me but they said years to come like 10 years...not 10 months down the line.

Im currently at mums now though. We needed to get out the house. The stress is getting to much and its making me even more depressed. It also helps mum and my sister out as she was meant to be dog sitting for our mum whilst shes at a friends wedding but with her being 31 weeks pregnant, having a hyper dog running round your feet isnt wise, so weve braught Dixie with us and were looking after the 2 dogs.

Well, im off to sleep now as yesterday anoth migraine set in and its hanging around again.

TTFN

XXXX

Devestated

Some people may say, atleast you know whats causing your trouble and others may say, its not that bad, ive had it but for me, its really got me down.

The reason it has got me down is because its the 3 bit of crappy news ive had this year so far and were literally only half way through.

I had Taunton hospital ring me yestersay saying theyve had my MRI results back fot my right hip. It turns out i havnt been making up my pain just to get morphine as some doctors have said, but infact i have a lebral tear in my right hip meaning i need to have surgery as soon as they can get the whole team together for me.

Im having the surgery down in Truro though as it can be done key hole down here rather than open surgery that Taunton can only do. So i have to wait for my care to be transfered over first.

The reason this bit of news has devestated me, isnt just the fact that doctors wasnt believing me but its also the fact that i flat line and stop breathing everytime i have a general.

Yes im aware that i dont have to have a general, but ive not been given these option as of yet. I guess each hospital has their own policies.

Only time will tell.

TTFN

XXXX

Scream And Shout And Let It All Out.

Lush little day. Well, thats how it started any how. Myself and the lady to Dixie for a walk like usual. I then had to drop my other half at the camel trail as she was meeting up with her healthy lady. To which they done more walking and then as soon as I picked her back up an hour later we went off swimming. Unfortunatly we didnt stay as long as we would have liked because a mass load of holiday makers came in and took over the place. When we got home, it was roughly time to feed Dixie. (And heres where the title comes from.) Two seconds after we put Dixies food down on the floor, my other halfs mum walks in from upstairs, demands for us to pick up Dixies food because her dog was coming in. We asked her to wait a few minutes to give Dixie time to actually eat, but no she storms in, picks it up and puts it on the table leaving Dixie with nothing. I wouldnt mind but we warm Dixies meat up as she prefers it like that and each time its being taken away from her, it then goes warm and then she eats nothing. The next thing to which not only pissed me off but upset me is that I had the two youngest rabbits in the run as we didnt manage to get them in there yesterday.Dixie was casually outside laying in the sun, not having a care in the world about the rabbits. My other half mum comes down stairs again and I told her, ease dont let Lottie out right now as Dixie is out there and the rabbits are still in the run. So what does she go and do. Let Lottie out and she strolls back in. Immediatly I can hear that they were up to no good, and she must of to as she goes back out side and is shouting at her dog to get off the run. Next thing I know, shes ran indoors screaming at me saying the rabbits have got out the run. (Same scenario as yesterday). We manage to get the dogs back inside and then she stands over me whilst watching me struggle with two rabbits and the run and says to me "how are they managing to get out all of a. Sudden?!". Admittedly my response was sharp and it went something like "because your dog keeps jumping on the run, pulling it around (to which there are now small holes in the canvas) and they have ripped up the pegs leaving a massive hole for them to hop in and out. Next time, one dog out her at a time and we will have to watch them". After sorting them out, I went back in and got a little upset, because if it was Spice who I call my grampher rabbit, he would have been dead. Hes 7 years old so is bloody old for a rabbit and we are actually suprised hes still going. But the stress of a dog jumping on him would literally give him a heart attack. As a rest, im not blinking scared to let him in the run which is unfair. Tonight because I was so stressed and upset, I asked my other half if we could take Dixie fir her second walk early and then go upstairs to bed and watch a film. To which she said yes and thats where I am now...though the film has finished and I am nowing doing my bed time nebulisers and physio. The film we watch by the way was "inhabited". Ive had it for years but my lovely lady has never seen it...she kept jumping and cuddling into me as she was so scared ha. Its only a 12 I think as well. Bless her. Well, its been another long day for me, and im ready for the planned PJ weekend so ill chat to you all tomorrow. TTFN XXXX

Yet Another Appointment

Musgrove Park was my hospital today and this was for my hip. Last year I was diagnosed with AVN and an impingement in my right hip so they decided to stick a massive needle into my hip joint and put steroids into it. This was more to try and control my pain rather than treat it. Sadly though since this my pain has just got worse and worse and im taking lots more morphine. Todays was my review appointment following my procedure and and the doctor asked how I was getting on and what its been like for me. I explained that for roughly four hours post the procedure my hip was perfect. Absolutly no pain...the next comment from the doctor was "and dont tell me, when the local wore off you were in agony". To which I obviously smiled and said, yeah, how did you know. She explained that there are a few things going on in my hip and potential some more theyve not yet seen. So they are sending me off for yet another MRI scan but with dye this time. Only of the things she said it could be is a liberal (not sure if this is the right spelling or not) tear. The reason I may have this is because I have deterioration of my femerol bone, there is now a point bit at the top which has potentially sliced through my liberal bit (which is the lining between my ball and socket joint, AKA cartilage bit. She did exain to me though that there could also be other things going on. All of which will show in the scan. To treat the tear, I got told that this is equally as major a surgery as what a hip replacement would be. She also informed me that if it turns out there are other things going on, the only way to fix them would be a total hip replacement. U.fortunatly though this would mean yet another general, and as she said, as ive stopped breathing on the last two, im going to have to be treated wisely and a lot more carefully...guess theres no harm in that though hey c; Now we are back home and in bed. Had a lot to tjink about again and my head is going mental. Wach appointment seems to be screwing my head up that little bit more. I dont think I can actual take much more. Y cant my life be simple. I want to be like most average everyday people!! TTFN XXXX

Really!?

Could you ever imagine what a day in my life could be like!? Well here is yet another day of being turned upside down. Latly now because of getting up so early, my body clock now seems to think 0730 is the perfect time for me to be awake. Fun. I guess with being up so early the day may aswell have been started, so after my.morning medications we toddled off to the feild. Annoyingly though we had to bring my mother in laws dog with us. We only managed to walk around the feild twice though as I was bloody shattered. After all of that walking we then had to do a mad dash to the post ofgice as the post man is starting to get rediculous again with not posting our parcels. It seems as though I am now instantly the person that has to run everyone around. With having to take my father in law to hospital we had to leave his car at the doctors surgery, and because my mother in law was having a stress that it may have got damaged, she rang the rac and through mobility she got it driven home. Thats fine, I dont mind helping with that to some extent because you cant help being poorly, but what hacks me off is, my mother in law can infact actually drive and is insured to drive their car, she just doesnt want to. I stead I am being made to run around. All in all to dat, I have driven from home, to Bodmin, to Wadebridge, to home, to Truro, to St Austell and then back home again. I had to miss my lunch time medication because of being in the middle of driving which cause my lungs to get pissed off and it also meant I couldnt have any pain relief because of the drowsiness it cause which it turn has left me crippled in pain. Thankfully because of my amazing girlfriend, as soonas we got home she dosed me high with drugs and cooked me a lovely tea. After about 2 hours I was now in less pain than before. Enough that I could walk a little and decided to quickly dash around the feild again with Dixie as its really unfair for her to miss out hust coz my body is screwed up. Im praying that I dont have to run everyone around tomorrow as I really cant cope with it. On other notes, my father in law had a CT scan with dye to find out what was causing his breathlessness and it turns put he has clots in both lungs. He sadly though is adiment that its his diabetes that has caused this, no matter how many times we tell him different. He says that just hecause he is 19stone and immobile (to some degree) that that wouldnt have caused the clots. I guess this is a little sadening as it means he wont change his lifestyle. Some might say that this could be a warning to him. I guess if hes not willing to accept that his lifestyle isnt the factor for his stint in hospital then hes not going to get that reality check for his life. Sad really. TTFN XXXX

Todays Journey

A nice early start again for me today...thanks to Dixie, but no harm done, just meant we could walk around the feild twice. Firstly though, its weigh day and im pleased to say im back on track with a 1lb and 3/4 weight loss. Ok, its not a lot, but its still a loss and im pleased as punch with it. I had to drop my lovely lady off at volunteering for 12. When I got home, a had a quick bit off dinner with Dixe and then headed up to our bedroom. My other half noticed yesterday that Dolly our goldfish has come down with white spot so I had the challenge of isolating her from the big tank where her and Dot live. I then had to scrub the big tank and do a water change to make sure we caught it in time before it spreaded to far. Heres a picture of the finished piece ha

Following the fish tank sorting I decided to get two of my glass cabinates on the wall that holds my china ornament shoes in. I wanted to surprise my lovely lady for when she got home...and off course I did. I then started finishing off the uploading off photos to CD ready to give our friend tomorrow following the naming ceremony. I also went online to Asda to get 11 photos printed off to add to my portfolio. Hopefully ill be receiving them by the end off the week. After all this was done, I decided to sneakily go into next doors hedge and snip 12 of their daffodils and I put them in a jar of water for a little treat for my girlfriend. Thankfully with living in the countryside, there are so many daffodils I dont think theyll ever notice. This evening I done some physio on the trampet to try and get my legs working that bit more, and then we set off for the feild again with the pup. I have to say, she really is catching on super well with her call back. Really pleased with her. I havnt spoke to my nand since before I had the flu, which as you know was a long time ago now so I felt mega bad. I am a little worried about her though, as she came down with a virus the same week I had the flu, and shes just getting poorlier and poorlier. She has an immune deficiency illness called shrogrones (ive spelt that how I say it just to warn you) so each time theres a cold going around, like me itll hit her hard. Although it was fantastic talking to ger, it never stops me worrying, and to make it even harder for me, she lives in Manchester so I cant pop round and make her a cup of tea. Well, fingers crossed all starts picking up soon, but for now, I must get back to the tv, Revenge is on!! TTFN XXXX

New Achievements!!

What an early start it was this morning, one I wasnt wanting one bit, sadly though it had to be done because my other half had a hospital appointment which I was taking her to. Nothing major, just the tightening if her braces, the adding of two more blocks and the adding of a thicker wire all in preperation for her surgery towards the end of the year. I also had a doctors appointment this afternoon because im still worried about my low phostphate level. Im pretty sure something should be being done about it. Thankfully I pre book this appointment a week ago to guarantee it bein with the doctore I get on with. Whilst with him, he dictated a letter to my new local cons asking for his support re my phosphate just to see if there was a link between that dropping and my asthma. He also told me he has wrote on my behalf to the ambulance service so that the next time I have an attack, they dont sit and play. He also gave me a letter from my new cons explaining I had a pisitive test to the mannitol challenge I done a few weeks back, also that he wants me to start a different pill in the hope it may help my asthma...to which my gp at first was confused as in his words "he thought I was in a gay relationship" lol, I had to explain a little bless. All in all im pleased though I also lost another 3lb in weight this week, which gi es a grand total of 8 and 3/4 lb this year altogether. I know its coming off slowly, but im pleased with that, ive not gain any weight at all this year and the slower it comes of the higher chance of it stating off. Right!? Me and my other half also took our little puppy Dixie for a walk down the camel trail today. It was her first time down there where she was allowed to walk and we had her on the stretchy lead so that she could wander where she liked. She absolutly loved it. When she got tired though, she made us chuckle because she just sat there and looked back the way we came. Such a little character she is. Im off for my hip procedure tomorrow so you may not hear from me. Wish me luck!! TTFN XXXX

Money, Money, Money

Everything lately involves money. Earlier this month, we found out that we have infact been paid £200 less each month from the job centre than what we thought as they failed to inform us. We had been wondering why each month we seemed to be dipping into my DLA payout from last February. And now we know why. The pain in the ass thing about this is that not only has christmas just passed, but it was also my birthday, plus valentines day, plus a years anniversary from me and my partner having been engaged. We also had to change over my car insurance which cost extra for the initial payment, plus we had double pet insurance for it being the initial payment, then Dixie became poorly and we had to rush her to the vets, and we also had to go to Birmingham twice for my appointments. Ontop of all this, because I am struggling each month, im cancelling my storage unit and selling everything thats in it. Last year to drop my unit it cost £25, now they want to take £120. I told them the reason im cancelling my storage is because I dont have the mo thly £53 let alone the amount they want today. They werent impressed so have given me till the 7th March to pay it off. It is literally all about money. Everyone wants it when we dont have it. Thankfully I have been a little OCD with saving because me and my partner desperately want a baby, so now we have needed to start dipping into this. Were not best pleased, but what else can we do!? The government dont want to help us, and the bills need to be paid. More stress to add to what we have. TTFN XXXX

Could Any More Shit Possibly Happen!?

A day out of hospital and there I was casually relaxing on the sofa trying to recover. Untill my mum comes home.

She didnt ask me how I was or what I had been up to just "did you still have money to give me as Im short"

Lets go back a few steps and Ill fill you in. My mum moved her new boyfirend in a little over two weeks ago, so I told mum I was giving her less money as I should be payong thirds as thats fair. Her response to me for that was you can fuck off. Charming hey. Little did she know I was being deadly serious.

So reverting back to yesterday, I responded to mum about me being serious about not giving her as much money and that of her new boyfriend is giving her money also there was no need.

This kicked off a massive argument of her calling me a selfish cow, an ungreatful bitch and a few more nastiness. She also told me I should be paying her more for her having to run me up and down the country to my hospital appointments. I reminded her that mentally im not coping with yet another diagnosis (to which she said oh ok to) and also about my friend Dawn passing away-her answer to this was we all have friends that die. This argument went on for about 45 minutes to which I was crying my eyes out and devestated my mum gave more of a shit about me not paying her an extra £150 over my physical and mental well being. At the end of this argument mum told me to get the fuck out of the house.

Little did she know I would actually go also!!

5 minutes later her boyfriend come back and they went for a walk with the dog.

In that time I had pack all my medications and a few bits of clothes, grabbed my rabbits in their hutches (bearing in mind I shouldnt be lifting after my surgery) and I filled the car with as much as possible. I rang my girlfriend in a right state with what just happened and because her family are so bloody amazing they have allowed me to move in with them.

This is going to be a struggle hospital wise as itll take 5 hours to get to my birmingham appointments and im going to have to try and find a decent hospital now in cornwall.

I cant believe that not only have I got to deal with a rapidly deteriorating shit health but I now have to try and move all my stuff out. So much from recovering from surgery with major complications. Im just glad that I now have a lovely relaxed new home with great support and care so I can atleast try and recover a little bit.

Well thats it for the dramatic life of me!!

TTFN

XXXX

All Done

Well yesterday at 1230 lunchtime I had the call to go down to theatre to have my fundoplication.

We got told that the op would take 45 mins and that I may need to go to HDU afterwards.

3 hours later and everyone worrying sick, I finally came out of theatre, the oporation went smoothly and they found a heria so fixed that whilst they were in there.

Sadly my lungs couldnt cope 100% and my oxygen levels dropped so they kept me on the ventilator for a little bit longer to help my lungs. Once they picked up I went to recovery and I slowly improved.

I was allowed to get back to the ward at around 1830 so altogether I was out for 6 hours. A lot longer than I was told.

I have 5 holes and a swollen tummy but thats the least of my worries.

Currently im still on oxygen as my oxygen levels keep dipping off it but thatll soon get better.

Im not allowed any food at all for ayleast 2 days so it is pure liquid for me which to be honest isnt bothering me much as even swolling my tablets is hard.

Im hoping to either go hone later tonight or tomorrow depends on how the respiratory team are with me

All is well for now and ill keep you posted.

TTFN

XXXX

Struggling

With another admission luming to hospital I cant help but keep getting flash backs from my last admission and previous admissions.

Ok this time there is a difference as its not an emergency and its not an asthma attack. Im going in for surgery.

Im struggling to sleep again because it seems that everytime I close my eyes im reliving the terrible times ive had and its scaring the poop out of me.

I dont know what to do, the relationship with my mum has changed because she has a new man in her life so I dont feel I can talk to her and my other half is back in her home town so I dont want to worry her when there is over 100 miles between us.

Shall I mention things to one of my link nurses when in Birmingham to see whether they can help at all or do anything or am I just being daft.

Whats also not helping is being on this silly diet and only getting about 1000 calories a day. I have no energy and just feel drained. Surely this also inst good for surgery.

Well theres my worries for now!!

Ill keep you posted for how I get on

TTFN

XXXX

The Call

Yesterday I had the call from Birmingham telling us there was a bed free on the respiratory ward.

Five hours later and we arrive. The traffic was hell, from post holiday drivers to accidents to road works to pure phantom traffic.

Mums new boyfriend came with us, and although I was pissed off at first for mum not asking me and also telling me that my girlfriend couldnt come coz the hospital wouldnt allow it, he was great, made me chuckle and really relaxed the whole situation. I have to admit its great that he is being so involved and supportive and helpful, the complete opposite to what mum old partner was like.

The doc came and said that basically all they are doing is increasing my steroids and giving me oxygen if I need it.

Have to admit im a little narcked off that ive been admitted 4 days pre op just to up my steroids.

They still insistes on cannulating me and it took 6 attempt. I was meant to be having a picc line but the doc said that wouldnt happen over the weekend.

Altogether I think its pretty shabby how the whole situation has gone, but I am bow here so I have to sit and wait.

I am on day 13 of my liquid diet and weirdly Ive lost no weight at all this week, really bizarre considering im only having 1000 calories if that a day.

Well I should stop ranting now but ill keep you all updated.

TTFN

XXXX

Ps the pictures are of my lovely photo frame that I have of my and my girlfriend and hanging off it is the special healing stones she purchased me as a gift. Also of my new spongebob pjs and my injuries already.

The Start!!

As of yesterday I have two weeks and one day untill my surgery. I have to admit I am officially now starting to shit myself.

Yes ok mum is going to be there, (only just with persuation might I add) but the last time I had an operatio where they knocked me out I stopped breathing. That was before my asthma was as bad as what is is now. So yes, I can officially say im SCARED!!

Worst of all, ive told the girlfriend that she can be with me before the surgery (so now) and the time post the surgery. She really wants to go up the day im having the operation but ive refused to let her. Purely for the fact that the hospital isnt in the safest of areas and im worried about her being on her own at certain times of the day. I kind of wish she was here for the day of the surgery!!

The other bad thing about this surgery is, I cant eat food for two weeks before the operstion and for a fair few amount of weeks after. My surgeon has told me I need to have three liquid slimfasts a day and a bit of yoghurt inbetween them. I am sick of them already and yesterday was my first day.

I dont know how im going to survive.

IM SO HUNGRY RIGHT NOW

TTFN

XXXXX