Wowzers

So yet again life has been turned right upside down and all over the place.

On tuesday i was due to have my hip surgery. I had everything sorted mentally etc because i had been having therapy. We r then sat there, all paperwork filled in and every member of the team has spoke to me, then low and behold after 3 hours of bwing bumped we then get told er sorry ur surgery has had to be cancelled as theres no ITU bed for if its needed post op. Was so pissed off as u can imagine. It has now been rebooked for the 24th of February and fingers crossed itll go ahead this time.

In other news, after signing up to do dog fostering last wednesday we were super pleased to learn we had passed. We got told initially that we wouldnt be able to foster untill Dixie had beeb spayed which we figured was fair enough BUT four hours after our home check and we had a phone call, they want us to foster a dog. Yay.

We picked him up on Sunday, his name is Diesel (no we didnt pick it) and he is a minnaturet Staffy. He is absolutly adorable but hes extremely tough to look after. Each day he wakes though he is getting better. He still has some aggression when he has to do something he doesnt like, for example getting out the car and he also has extremely bad food aggression. Sadly thatll take a while to go because hes just not use to having regular meals. He has really bad seperation anxiety also so the minute myself or my wife leave the room he howls the place down. Sadly that may never go.

On sunday we also had to rescue a rabbit. He was in such a bad shape u am totally suprised that he is still alive. We have managed to sort his hutch so its now in a liveable condition,weve also cut his nails and also brush half his fur. I say half because it is in such a bad state that we really dont want to traumatise him so we are giving him breaks inbetween time.

For now though life really isnt that much different.

Im starting to feel really poorly again though. Really drowsey and pain in my lungs. I blinking hope its just a passing cold =(

Well i best be off. Sounds like some pooches need fussing!!

TTFN

XXXX

Stress Stress Stress

Round two of my eye movemwnt therapy for my PTSD was on Monday. Prior to arriving i was actually shitting myself, i really didnt want to go purly because last week after my last session was hell. I felt shit, wanted to commit suicide and just felt rubbish, so you can see why i didnt want this week to happen.

Well the session itself was a pretty bad one and i could actually only do half an hour as a result and the therapist knew it was bad with how things went.

After the session we went shopping and i went home and slept just as i was told to as i dint want any bad effect because of not doing what i was told. Unfortunatly though, it wasnt untill about 9pm that things started going really bad again. Thankfully i had an amazing friend at the end of the phone i could text as i didnt want to worry my wife. I felt so weird though. I didnt feel like my body was my own. I was shaky. Jittery and beyond scared. I ended up having to taken more morphine than usual to try and calm my system down. It knocked me to sleep as you can imagine and thankfully by the time i woke the next day things had been a little more easier to cope with.

I think once my surgery is over next week things may get a little easier for me.

On Tuesday my wife went to the doctors for a bloody test. Im not going to tempt fate but the result should be in today. Weve rung aleady but sadly they arnt back as of yet so we are going to have to ring tomorrow.

On wednesday I felt like we needed to do something for ourselves and to help others. Im going through a huge phase of wanting to help others so i signed myself and my wife up to foster poorly and abandoned dogs. Today we had a suprise phone call from a homechecker as we had passed the first stage and she wanted to come out and visit us today. Well that check has just been completed and we have passed. Yay!! Heres to helping more lost pooches.

Well ill probably not be blogging untill after my surgery now so hope you all have a gokd weekend.

TTFN

XXXX

The End Is Near

The title for my post today is very relevant to a number of things, firstly, the end to this year. This year has not only been fantastic because we got Dixie, but because we got married, my wife turned 21, we have met our potential sperm donor, we have moved into our own home, we have a new nephew, ive started a new treatment and so far, this is the first year ive only landed in ITU once. The second thing that is nearing to an end is, from what it seems, the weekly trips to plymouth hospital being taught my subcut Ig infusions. Myself and my wife have pucked up and remembered the whole routine in just one session so now we are literally just reasuring ourselves and also keeping an eye on the headaches I am getting following these treatments each week. My link nurse seems to think though that shell be doing a home visit by christmas and then we will only need to go to clinic for follow ups. The third thing coming to an end this year is Dixie being in foster. Weight, dont get excited just yet as no we havnt been given a permenant home. Just sadly the lady who was fostering whilst her husband works away so that she g ad company can no longer foster because her husband is no longer working away and he wNts to decorate the house. We aremanaging to stay at my dads from christmas day untill the 6th of January but then we are stuck, we have nowhere for Dixie to go. I refuse to get rid of her. This year has literally been full of emotions being both positive and negetive. A lot of how the year has turned out has been utter crap, but it seems that no matter what is thrown at us, we have managed to pick ourselves up, carry on and see the lighter sideof things. To top of this year, I got gi en my mobity scooter. Ive been on it fir about 10 minutes at a time so far untill this week. This week has shown new beginnings, opportunities and prospect because myself and my wife were able to go for a stroll down the camel trail for 3 hours and although I was tired it was purly through fresh air and chest infection instead of the usual muscle weakness and breThlessness. I really cant bieve how so much can go on in just one persons life. May e I should write a book...though dont hold me to that as the chances of me following it through are as high a chance of me doing a skydive jump. TTFN XXXX

Suprises

Nearly three years ago now I turned 21. Most people remember this birthday as a special one with great memories and events. For me it was crap just like the last ten birthdays I have had.for me this one was rubbish for a new reason,I was in hospital up until the day before,I had a photo shoot booked for my actual birthday but I was extremly exhausted and looked like shit, and worst of all my then step dad had told his kids that him and my mum had recently got engaged. The cried, screamed and made a point if ruining my day. With how ny birthdays have gone, I made a promise to myself, and that was that anyone new who enters into my life would get treated amazingly on their birthdays and this year, it was my wifes 21st bithday, november 25th to be exact. From my previous blog you can see that on the 23rd I got her a guinea pig, yes nearly a week on we do finally have a name, it being Heidi. My other half loves her and it has helped give her a great daily focus and a new meaning to get out if bed in the morning, other than to just help me. On Tuesday I had a huge suprise for her also. During the day her parents took us for mcdonalds (which has upset me as they forgot it was her 21st and it seemed like they really didnt give a damn). At 5pm we started getting ready, all the usual questions kept being asked like where we going, what we doing, what do I need to wear. Of course I only let onto the clothes she needed lol. We then left at about 6ish to head to our destination. Jamie olivers fifteen resturaunt. She absolutly loved it. She had never been anywhere like this or ever had so much money spent on her. In my eyes though she deserves it. She does so much for me daily, she deserves to have something for her. So we dined in expensiveness and had moctales because we are so classy ha. At the end of the meal, because I prebooked and told them it was a big occassion, my lovely lady had 12 perposly baked cupcakes made for here and displayed on a wooden voard with chocolate sauce wrote on the board saying happy birthday. They also put canels in the cupcakes too. They treated us both so well, its hard to believe there are still amazing people and atmospheres out there. On wednesday, going a bit cheaper this time, I then took her to the cinema to watch the new hunger games film. Well, for me to as im addicted to it. We bith loved it and cant wait for the second part to be released. To top off the week, our new future sperm donor also rang to chat in person and he seems like such a nice cating person. I just really hope this means that soon, we could have child. Not only this but, my dad has agreed for me and the other half to let us stay with him for two weeks over christmas so that we could have Dixie. Like I say, this week has just been full of suprises. TTFN XXXX

New Beginnings

Before I go onto the main subject of the post i thought i would share with you all that last monday i finally got that lump that was growing pretty quickly in my mouth removed. I had to have surgery to have this done and i was awake throughout it all. It was not nice at all but its gone so im please. Sadly though because the surgeon had to remove soooo much tissue because of the size of the lump, there then wasnt enough tissue left to stitch the two sides together so i now have a huge lump in the floor of my mouth. Its weird as i can stick my tongue in it lol.

On other notes though, and back to the title, as of 1330 pm on Thursday 13th November,my self and my girlfriend offically became married. It was absoulty amazing and everythibg went as planned. I was so please and happy.

We stayed in a 4 star hotel for 4 nices and blinking heck we wasnt use to it. It was so strange saying can you add the meal to our tab etc instead of paying straight away. Weve decided though that we must go back. The treatment there was amazing and we went swimming aswell as it was all included in the price.

Our next big suprise is my wifes 21st birthday. All her presents are wrapped and ready, Now we just need the big day to arrive.

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

The Joys Of An Asthmatics Life

Ventolin, salbutamol, puffer, inhaler, reliever. Recognise these words!? Im sure you have!! These are just what asthmatics use because they get out of breath right!? Overweight and dont exercise so use their "puffer" and carry on as if life never stopped. WAIT!!!!!!!!!!!!!!!!!!!!! Blinking heck well I have a shock for you. If you think that this is asthma defined you need to spend a day in my shoes, actually scrap that, ill give you the morning or the afternoon, you pick as you wouldnt cope a day. Asthma is not a few puffs of the blue and carry on where you left off. My life has been destroyed by asthma. My asthma is very different and suprisingly not many people have it which is why its not as well known. I have severe brittle asthma. I could be sat watching telly and then within a split second my lungs could decide that actually they didnt like that cold air that ive now started breathing in because of the winter months. Within that split second my oxygen levels will plummet, my co2 levels will rise to dangerous levels, I will become exhausted, tired, confused, SCARED. My life is hanging in the balance once again. I need drugs wuick. Quicker than quick infact. I need an ambulance, shit wheres the phone, shit I cant talk. Phew my girlfriend has walked into the room, 999 "ambulance"...amazing paramedics come within minutes because ive an emergency flag on my address alerting them of my asthma. They put a needle in my veins, they push drugs into my blood stream, they put and oxygen mask on my face with more nebulisers. The get me into the back of the ambulance, hook me up to all the monitors, the pre call the emergency room, blue lights go on, sirens blaring, 90mph down the dual carriageway, arrive in resus, consultant;nurses;junior doctors;itu team all waiting form my arrive, fuck where they taking my girlfriend please dont leave me on my own, doctors listen to my chest, its silent and no air is shifting, the stab a needle into the artery in my wrist to draw special blood, they test the blood and get instant result, results arnt good, more iv drugs being pumped into my system, muscles working harder than they should, doctors start getting really concerened, I move from resus to intensive care, they stab my artery again with a more perminant lline, they attatch a tighter fitting mask to my face, I remain like this for hours, finally drugs start kicking in, it becomes easier to breathe, my life is coming back to me. Ive survived another. Attack!! I guess me going through a breif outline of my life is like trying explain to a man the real pain women go through with Labour and sadly they will never know for real. For you, there is a very similar way to know how I feel, tape up ur nose so u cant breathe through it, put a normal average size drinking straw between your lips, now tape up the rest of your mouth so no air can get in other than through that straw. Struggling yet!? No, ok, now go and run for 20 minutes flat. You wish. You wouldnt make it 2 minutes!! Thats how I feel daily and when an attack shows its ugly face this struggling and fighting for breath feel intensifies. Ontop of this, I take many medications. These have side effects. I need to devide, do I want these side effects ir do I want to breathe!? Im not an idiot, I choose to breathe. Unfortunatly though this brings me to todays appoinyment with the doctor. One of the side effects from my medications is a muscle wasting disease. Ive now been told that theyve looked into my case. Theyve assessed everything. Theyve looked at alternative drugs. THERES NOTHING THEY CAN DO. My muscle disease I am told today will get worse. The only way it can remotely get better is by coming off the medications, but like I say, I dont and I cant breathe without these drugs. Currently its getting to the stage im struggling even more to hold my head up. Ive been given exercises to try and strengthen my neck muscles but im told not to do them too iften as I can rip them and then they are permanently damaged beyond repair. Inevitably I will end up like a newborn, I will not be able to hold my head up. So, back to my earlier question, do you want to spend a day in my shoes!? TTFN XXXX

Suprises!!

I know its super early for a blog but I figured I would use the clocks going back to my advantage. The lovely lady is still asleep and this blog is about her and I cant risk her seeing it!!

A few weeks ago my other half had said whilst watching Janie Olivers fifteen minute meals that she would love to go to his resturaunt as shes heard its amazing and top quality food. (I agreed as ive been to one). She said "if only we could afford it for my 21st Birthday". Told her that unfortunatly that more than likely wouldnt be possible simply because it cost so much and we can nooooo way afford it.

Hehe

Well, a few days ago I have just made it happen.

I got in contact with the reservations team through email (as when your other half is with you 24/7 because they look after you, it makes ringing very difficul) and they have been amazing.

They told me of everything that was available and what I could do.

Sooo, on the 25th of Novemember (which is her actual birthday) we have a table book at the Cornwall resturaunt for 7pm. as I told her it was for her 21st birthday, they said that on their plates during pudding etc and other little occasions, they will write birthday messages to her from the chefs. (Amazing!!!!!). Ive also had it arranged that they will be baking 12 cupcakes that will be displayed on a lush cake stand and brought over to our table at the end of the meal hehe.

They are amazing there. They have gone all out and really made her Birthday seem that little bit amazing.

Now all I have to do is try and keep it a secret for another 30 days else itll all be ruined.

TTFN

XXXX

Experiences

With us still not having Dixie to keep us company, weve been trying to keep ourselves busy.

At the weekend i saw a voucher to have a skywire experience in the eden project.

So naturally i got us both a ticket lol.

The skywire is 660m long and you go at 60mph. Epic

It was fantastic, ive always wanted to do a skydive but couldnt because of my lungs so this is the next best thing.

My other half of course screamed the whole way down and may the instructor chuckle. I on the other hand got stuck trying to shuffle into the superman suite because of my muscle weakness. Oh the joys.

Well when we were there i paid for us to have a head cam...now we just need to find the laptop power cable within the flat to put it onto the pc lol.

TTFN

XXXX

Happiness

Just flying by to say

WEVE GOT A HOME!!!!!!!!!!

Ok its only a temporary emergency accomadation but it means that we wont be homeless by the 6th October as weve been given the keys today

Happy

Downside, we cant bring our puppy with us to this temporary place so were trying to get her fostered untill we can have her back.

Sad

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

Stolen From A friend For Invisable Illness Week

Admittedly this has been stolen but of course with my answers. It truly shows that to be poorly, disabled or struggling it doesnt have to be usually seen... 1. The illness I live with is: Asthma - to define it a little more, Brittle asthma. This is very similar to asthma but its more severe. I have regular attacks, rediculous amount of medications and frequent trips to hoapital. 2. I was diagnosed with it in the year: 1991. I was 3 months old 3. But I had symptoms since: a few days old that then gradually got worse and worse 4. The biggest adjustment I’ve had to make is: realising that I cant do the things I use to and I shouldnt be embarrassed if I need to take my meds in public. 5. Most people assume: "That it's just Asthma" - I cant breathe and I have a few puffs of the blue and im sorted. They dont see the devestation of watching your friends die or needing people to actually look after u because your lung function is below half of what it should be. 6. The hardest part about mornings are: waking up and it taking 2 hours to get ready. Know not just getting washed and dressed. But also eating, taking tablets and doing and hours worth of.nebulisers before I can move. 7. My favorite medical TV show is: Casualty and Holby city 8. A gadget I couldn’t live without is: I want to be greedy.as I have three...my camera, photography is my passion...my mobile, it literally never leaves my side.and my kindle, not being able to.read, play games and.browse thee net whilst doing my meds is a nightmare. 9. The hardest part about nights are: not actually sleeping. Being led there with ur girlfriend to ur right and ur puppy to ur left taking it in turns to snore and u literally just cant sleep. 10. Each day I take : far to much to write here but.4 different types.of nebulisers, a draw full of tablets and a bit more 11. Regarding alternative treatments I: personally I would never stop my current treatments to try thwm. There is no guaranty that they would work and im.not about to risk my life over it. 12. If I had to choose between an invisible illness or visible I would choose: visible, no questioning that. Id get more respect for a dibilitating illness. 13. Regarding working and career: I use to.work.in.bristol childrens hospital and my dream was to become a.paramedic...asthma.stole.that from.me. 14. People would be surprised to know: that not every pwrson with the same illness ends up in the same situation of poorly co trolled health. Not everyone takes the exact.same.meds.and not everyone.has to be exactly how the medical textbooks say its meant to be. 15. The hardest thing to accept about my illness is: im not the.person I use to be. I cant do what I use to. I cant eat what I use to. Adaptions have to.be made 16. Something I never thought I could do with my illness that I did was: find someone to love who loves me for who I am and who doesnt allow my health needs to get in the way between us. 17. The commercials/adverts about my illness: sadly there arnt any. Adverts cost to.much mo.ey for awarness.to be raised. Its all down to AUK and sufferers. 18. Something I really miss doing since I was diagnosed is: being active. I was the sportiest person I know and I cant even walk up a.flight of.stairs anymore. 19. It was really hard to have to give up; Dairy , if I.eat any form.I get super poorly...though sometimes I just cant resiat it. 20. A new hobby I have taken up since my diagnosis is: knitting 21. If I could have one day of feeling normal again I would:go on holiday abroad. Be able to pass a.fit to fly test and go on the holiday to florida that I had to miss this year with my.best friend 22. My illness has taught me: To stay positive. Never let a day pass with out telling the ones u love that u love them. Treat every day as if it was ur last and enjoy yourself. 23. Want to know a secret? My other half has no link to my blog at all, she never reads anything on.here as this is a.space for.me to.rant about life without it having to upset her. 24. But I love it when people: share things with voth myself and my.other half. We are a.team and stick together. 25. My favorite motto, scripture, quote that gets me through tough times is: live life, love laughter. Keep smilling. Never regret. 26. When someone is diagnosed I’d like to tell them:this isnt a.life sentence, u control ir asthma, not ur asthma control u. 27. Something that has surprised me about living with an illness is: the lack of empathy from people who know nothing.about ur daily living with this disease. 28. The nicest thing someone did for me when I wasn’t feeling well was: send my girlfriend up to me.as a.suprise visit when I was on.a.breathing machine 200 miles.away from her. 29. I’m involved with Invisible Illness Awarness week because: people need to be made aware. An understanding needs to.be given and taught. 30. The fact that you read this list makes me feel: like im.teaching people. Giving an insight into my life. Proving there is life after a diagnosis and that there are many people out there.suffering with a disease that cannot be seen TTFN XXXX

Emotions Running High

Two different ends of the spectrum it turned out to be yesterday.

With all the recent news with us now having to move by the 6th October we were getting to the point we needed as much help as possible. Last friday we got assigned a housing officer who had then rang me on Monday to talk things through. We were supposed to receive a huge yellow form to fill out to be able to get us the support for a home. This hadnt arrived so my and my other half woke up super early yesterday and got to the council house by 9am. Doing this ensured there would be no other people waiting in front of us. We also met our housing officer who is amazing. Compared to many other people within the council she really does care and want to help. She helped us fill in all the paperwork, had been looking online to see f there was a private bungalow or flat we can have for now and they would pay the deposite (sadly there are none) and then she said she was off to speak to the homeless team and also increase our banding on the council list. Although this doesnt make me happy as we still have no home, its reasuring to know that we are being helped the best way possible.

Following all this, we then had to drive up to Taunton to pick up my sister, brother in law and baby nephew and then we had to drive over to my mum in Bridgwater.
Our nan was there which was great as weve not seen her in a little while as she lives in Manchester and of course this was the first time to which my nan met both my girlfriend and our baby nephew (her great grandson). The day was amazing. Was such a fantastic experience to be in a room with 4 generations. Was smiling the whole way home.

Of course though im worried about my mum. She has become very poorly with worry about both mine and my girlfriends health and home situation and of course no matter what i say, untill we have a place to go to, she will keep stressing about the sotuation.
On top of this, my mum had to go to the doctors today as she was a little concerened. It turbs out she has a 2cm lump having grown in her breast so shes now been refered for urgery examination, treatment, scanes and biopsies.

Nothing ever runs smoothly in life

TTFN

XXXX

What If?!

Ever wondered what if...

I do every day!!

What if my lungs were healthy?!

What if my muscles didnt choose to want a progressive disease?!

What if my immune system was normal?!

What if my parents never got a divorse?!

What if my house never caught fire when i was 16?!

What if i managed to get to my uni placement and became a paramedic?!

What if i hadnt met my future wife?!

What if, what if what if?!

The list is endless!!

My latest what if, what if we dont get a home by October 4th!?

Im so blinking scared about everything and this isnt just because we will potentially be homeless but its because a lot of my life so far has ended up going in the wrong direction, it hasnt gone as ive planned!!

So, like before, have you ever though what if!?

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

Really!?

Ever get so pissed off you dont know how to express it or even deal with it...well thats me today.

For the past year, everything ive done jusg isnt good enough for certain people. My girlfriends parents im mainly talking about.

We decorate our bedroom in january but i got told her dad had to do it as hes better.

We braught my old rabbitt hutch to this house, before we new it as we popped out her dad had built it saying he could do it better...even though i built it first time around.

I start to build our rabbit run, he finishes it saying he was better.

I plant so flowers in the garden in pots, ever day we go down and hes taken over with them again.

Today, i sort out my girlfriend bike so she can start new challenges again. All is safe, she rode it and was comfy and all was working well. Her dad comes up to the bedroom and tells us he will be sorting it tomorrow and cleaning it as hes built bikes since the age of 13...and that doesnt make u any better than me. I too have built bikes, and cars to that fact.

Its pissing me off. Everything i do here is never good enough for them. I mean i dont actualy care how immature they are being about everything. The thing i care about is that its making me feel like shit, constantly being put downand being made to think im never good enough. Its an insult and i hate it.

Im off to be depressed now...that is if i can do that right also!?

TTFN

XXXX

Annoyance

Ever had so much pain ur restless!? I have. Today has been one of those days. Ive maxed out on all my pain releif and im still in complete agony with my hips. Thank goodness ive got my CT scan on the 1st, my hip consultant on the 22nd and then pain team in October. Hopfully then all this pain will start to be sorted out. Though im not looking forward to the surgery if and when they say it.

In other news, my lungs have also been crap today. I knew something was wrong when i had a rubbish nights sleep, mucus plugs and a husky voice.

So i check my oxygen levels and peak flow. Oxygen has been about 91% all day and peak flow is 50% down. Im not rushing to the GP though as im seei g my respiratory consultant on Wednesday so if he feels i need to step up the treatment then ill do so.

I also went to vauxhal this morning because i really need to trade in my car as my current car, although bloody amazing its simply just to small for me now.
Unfortunatly though they only had one of the style cars i want and it was about 5000 over my budget and the car i saw on the net last week went on friday. Typical.
The man was nice though and took all my details and is going to ring me as soon as one comes in stock and ill be getting first dibs on it. Im just praying that the dealer doesnt want another deposit as unless i take out a 2nd credit card i cant afford a few hundred on a deposit now.

Well, other than all this annoying stuff today, generally it has been a good day.

My mum got me the game scrabble at the weekened as we have been searching everywhere for a cheap first addition game to no luck. Me and my lady will be playing tomorrow if i can cope out of bed and ill be kicking her ass.

TTFN

XXXX

The Love Of My Life

What an amazing few days ive had...but shhhh dont tell everyone else my enjoyment may be stolen!!

Last christmas, my amazing fiance got me 2 shrek tickets for Bristol Hippodrome. Thankfully also we had recently been given a disability grant. As a result we booked 2 nights away.

On the Wednesday initially we dropped Dixie off at the kennels which we hated might i add and really didnt want to leave her. We then went via my sisters to have cuddles with the nephew and then we finally set off to Bristol.

After we checked in we went for a stroll around cribbs causeway in the hunt for baby clothes bargains as my nephew has been given lots of 3-6 months and older clothers but has about 3 0-3month clothes. Thankfully BHS had a huge sale on and we got 5 outfits for £16 which i was super pleased with. I then treated my lady to spud-u-like. Yes ok people may be like, what, you took her for a jacket potato...but its amazing. You can choose ur own filling and shes never heard of this food place before. Thankfully we both super enjoyed ourselves, so much so we tucked into a millies cookie for pudding...which the othernhalf has also never heard of or eaten before.

Thursday came and it was show time, but not before i treated my girlfriend to another food adventure shes never heard of. I took her to flavourz. Which for those who dont know its and all you can eat buffet bar which has chinese, indian, italian, english and much more all for a great price of £4.95 at lunch tim.

Shrek of course was out of this world. We both was so happy when we left. My other half has also never been to see a show in a theatre before so she was beside her self with joy. Which might i add was great to see after all the crap weve had at home lately. (We ended up buying a gingy puppet to take home for Dixie which she has already eaten off a gum drop oops ha)

Friday came and it was time to come home.

First off we went via the cemetry to visit my nan and grandad. Sadly i am the only family member that ever goes to visit them and also buy them new flowers and decorate their head stones and i was mightly pissed to see that some bastard had stolen the one whole pot of flowers that was on my grandads head stone. Filthy scumbags they are for stealing others stuff. I hate it so much and it makes me really angry.

Well, rant over and off we popped for lunch with mum and my step dad. Whilst eating away, my mum suddenly come out with "how do you feel about coming away with us easter week next year as a wedding present from us. All youll do is share the place with us and you can go off and gander for the whole time". Needless to say we were both shocked and of course said yes.

We finally got home at 8pm or just after. Half way back to Cornwall and the motorway ends up like an asda carpark so wet stopped at Exeter services and sat it out for a little while. Much comfier on the costa sofas that in a car seat.

Today was amazing also. We left to go and pick up Dixie again. The reaction.we got when shet saw us around the corner was the best ever. If youve never seen a excitable puppy, picture a springer spaniel on speed and triple it as that was what Dixie was like. And we loved it.

When we got home i settled down and made the finaly present for my sister. When we first met my nephew, i took my beastie camera with met and took a lot of photos for her. In fact 54 in total. Because im nice, i have gone out and got a black papered paperchase book and made a little portfolio of all the photos i took for her. I was going to send it in the post to suprise her just like ive sent 3 photos to my mum and nan but now that its complete it is rather large so ill be giving it to her in person on the 10th.

Other than all this excitment. The usual crap has gone on. My chest is flaring up again. My ladies parents are still be arseholes and went in our room again whilst we were away. A lock will now be put on our door when we next get paid in 2 weeks. Ggrr

Well i think thats all for now

TTFN

XXXX

Wowzers

What a few days it has been.

As youve guess it, the stress we had a few weeks ago through my other halfs parents has started back up again.

As of yesterday the was now moaning that we took OUR coffee upstairs. Yup you got it, it wasnt even their yet theyve gotten arsey over it, so kicked off.

Today we pop out to get Dixies flea abd worm treatment, we litterally step one foot through the door and we are bombarded with the fact that they have found a bungalow on cornwall housing, they went and viewed it today and have applied for it, so we could be moving in 2 weeks time.
Yay great, they get a lovely home to live in,we on the other hand become homless.

What the fuck are we going to do.

Why are they doing this to us, all along theyve said we will move first and them after to ensure no one is without a home. Then they go and do this to us.

So i distract myself from all of this and start preparing our dinner. I can only do the non dangerous prep as i cant risk doing any more. Ive hurt myself far to many times...but wait, even doing our dinner was wrong. They wanted to use the appliances we were using...yet theyve been sat on their arse doing nothing and the minute we start cooking we are now in their way. But, this isnt all, we are then being dictated to for how this meal should be cooked. Bareing in mind,theyve never cooked it and me hve the recipe book in front of us to which we are following.

I literally cant wait to get the hell out of here.

On a good note though, me.and my.other half are off to bristol for the next 3 days as we are seeing shrek in theatre. We are also flying by my sisters to have squigy cuddles with our nephew. Cute!!

TTFN

XXXX