Mixed Emotions.

This week has literally been all over the place for me and my wife but as usual, we are getting through it. First off, our donor has been helping us. We found a new donor to help us have a child. He lives in Cambridge and has a girlfriend but sadly she has a fatal geart condition so could never carry a child. He doesnt want to be involved physically but just wants updates. We are happy with that and at the end if the day, we have stated that for us to choose whether our child knows their father before they are even born is completly unfair. We are choosing their life, yet they should choose their path. So far we have had three donations and fingers crossed a few more as the week goes by. The next bit of craziness is that we had to find another foster family for Dixie because after we have her for two weeks over christmas, her currently family could no longer have her. We found two lovely people around the corner from us, but sadly on Monday, they to got made homeless by the council so it all fell through This week though, I have said some weird stuff to my wife. Firstly being that I told her I wasnt renewing our post redirection for her mums address as I have a really funny feeling we are going to get offered our permenant home. Then when the foster situation fell through I then said to my wife (this being a different day) im not going to put out a new add for a foster family for her as I have a funny feeling we are bringing her back to live with us in January. Today, at 11:15 am I got a phone call. Its the council. We have been allocated a house. We are viewing it tomorrow at 10:30 am and if it is suitable, we will get the keys by monday hopefully. Now come on, these weirdfeeling I had, something cant be right there surly. How did I know!? In other positive news, I had a big medical supplys delivery today... and our first home visit assessment to see if we can cope doing my infusions at home. Guess what, we aced that too. And again she went on about how amazed at how fast we have picked up on this and that we have been the fastest out of the 70 patients on her clinic list. She also caught eye of all my knitting and was amazed and impressed with that too. So, all in all so far this week has been fantastic. Can you all keep your fingers crossed for the new home and positive tests for next week. In the mean time, I am fighting yet more issues with my lungs. Sky high temp, low sats and peak flow and a wheezy chest. Perfect. Life goes on though. TTFN XXXX

Beating Statistics

Well first i would like to talk about my title in that myself and my Mrs has beating statistics at Derriford Hospital Immunology clinic. Aparently a person is meant to take 6 weeks to be trained how to do self injection of Sub Cut IgG treatmemt, myself and the lady on the other hand have learnt it in 3 weeks and as of next week we wills be at home doing it ourselves. I am soooo overly happy with this is as it means theres no worries about missing doses over christmas because of needing to be in Bristol to make sure that Dixie is having to be put up for adoption.
Im still amazed at how quickly we have picked it up, i mean i know its not hard drawing up a blood product, attaching it to a pump, stabbing my belly and pressing go but to some people it obviously takes a little longer.

In other news, last night and i guess still aparet of me today is feeling a little down in the baby department. I really want to expand on our family. Weve been trying now for nearly a year to have a baby and we seem to be getting know where. Im also feeling crap in that i want to be able to be a real mum. Not just one on the birth certificate of my wifes child. I want a child that was created by me. One that i habe carried myself. One that has grown within me. Its just not going to happen,not in the direct near future anyway because of my health and drugs.

Why cant life be fair. Equal. Easy!?

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

My Life In A Nutshell

MONDAY 2ND JULY 2012.

Dont worry, im not expecting you to know why this date is of any significant value to anyone as it doesnt have one. This date though is the last time i blogged about my medication. The treatment that keeps me going. In 2012 i was with consultants that really wanted to start from scratch. Reduce nearly all my meds and find out the best ones from me. That didnt happen. Instead, they started adding more in.

Today things are worse than before.

During a 24 hour period i take on average 64 tablets a day, 16 nebulisers minimum. A salbutamol inhaler. A nasal spray. A tablet inhaler twice a day. A TENS machine, morphine patch. Supplements and im also now on sub cut IgG infusions of 60mls a week.

I wish my life was counting other things instead of drugs, oxygen reading, pulse reading and peak flow reading.

I guess being in the UK i am extremely lucky, my medications get funded by the NHS and the government. I really feel for those in other countries that have to pay for their treatments and its in the thousands. If their insurance wont cover it, how does the government expect them to get the vital medication they need!?

I know one things for sure, if i didnt have this list of medications, i would be dead. If any asthmatic didnt have one single inhaler, they would be dead.

Asthma needs to be more recognised. I have been doing this blog now for near on 2 years and in those 2 years. Ive literallt have my blog viewed thousands of time. I just pray that just 10 of those thousands of people have gained a little more knowledge into the life of an asthmatic. That they can see its not just a few puffs of a blue inhaler. Its time consuming, mind and bodily draining, its demanding and most of all its life threatening.

Asthma needs a cure, can you help find it!?

_____

On a different note, depression, this also is very life threatening and not enough people know about it. This week, Tuesday infact is my wifes 21st birthday and suffers from severe depression. With our housing situation this has meant that things have been getting worse again. I didnt know what to do, how to help her so,i gave her an early birthday present that she can focus on, and give a purpose of living for. I got her a guinea pig. We still dont have a name for her but she is 9 weeks old and such a character. Today is her first day with us and in ta time, she has climbed the curtain 3 times and climbed up the inside of my trouser leg twice. Shes blinking fast thats for sure

Well, i better be off, i have those drugs to go take so i can make it through the night as i am currently suffering yet another chest infection.

TTFN
XXXX

Here is a visual look into my medications and below is our latest family member, the nameless guinespig class="separator" style="clear: both; text-align: center;">

My Last Hope

Since being told in January that there was nothing left for me, nothing left trestment wise to help my asthma i was preparing for each year that went by for ny life to get worse. My lungs to get worse. Thankfully ive been given a lifeline. I change my local consultant when i move to Cornwall and they have done tests that show i have PID which is primary immune deficiency. As i have this, they have said this is the reason to which i am getting around 15 infections there abouts a year which is not only causing my asthma to flare but also my lung function to permenantly be done and ive now built up huge amounts of irreversable scar tissue in and around my lungs. It suck. The worst thing about it all is this could have been solved years ago. I first had this picked uo 4 years ago but was told there was no treatment when in fact therevwas and there still is. Im just so glad I moved to Cornwall as it now means ive been given hope. So my new treatment IgG transfusion. Its pretty technical stuff and again as I said before, without wonderful blood donors, my life wouldnt be able to have this. Each 20ml of my treatment is a few thousands worth of donors bloods and each week I will be recieving 60ml and that is for the next year alone. If the treatment shows improvement I will be staying on this untill they find an alternative. This could be life. For my first ever treatment, me and my wife watched the nurses set everything up and put the needle in my belly. Next week though its our turn. We will be taking a hands on aproach so that the quicker we learn how to set up the pumps and do everything in a safe manor, the quicker I wont have to keep coming to derriford hospital. Each infusion takes an hour to go through. I can only have a maximum of 20mls through each pump at a time into that specific area of my tummy to prevent damage. Yes it take a long time to go through but once its running, youre free to do what you like, well withing reason. On this occasion, I did have a reaction to the blood product but this was to be expected as it was a foreign body being placed into the skin surface of my belly. Today it is still pretty red, sore and bruised but itll settle. Im just praying this is the miracle treatment that could give me some form of life back. Im not banking on my life to be exactly the same as 5 years ago as thats impossible, I have far to much damage, but even if im semi there I will be impressed. Here is a picture of my treatment

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

A Positive End To The Week

Im starting off with Tuesday because its quick and breif and doesnt really match the title. As you know, we have now been without our princess Dixie for five weeks and its making us beyond sad. For one we really wanted her at our wedding next Thursday that it would be a miracle to have had her back. So instead, I had found on of the top tattoo studies in England and pleaded with them with our story and the managed to have a cancellation on Tuesday and we got it. I can now say that both me and the other half are the proud owners of a new tattoo and it freaking killed. We have it in the same spot, on our left hand side on our ribs parallel to our hearts. Its a unique tattoo that noone else will ever have because its Dixies name and her exact paw print. I bruised mega bad and it is still heali g but here is a picture 3 hours after we had it do.

Wednesday we were super lazy and couldnt be bothered yo do anything majorly important so chilled and watched tv,oh and my friend set me a challenge to knit her son some mittens, and I gave to admit, these too are amazing.

On Thursday I drove us both up to my mums to have a pre wedding hen meal type thingy. We also picked up my sister along the way and of course my ickle nephew who has and is growing up far to fast. Of course I had lots and lots of cuddles and cant wait to see him again next week for the wedding. I really loved being with the three main ladies of my life. Our relationships are getting far better and we literally get on amazingly. I couldnt wish for a better family. To top of the day, to be even more amazing, my sister asked if I would be my bephews hod mummy, to which of course I said yes. Wasnt refusing that task. Today was the day for the council lady to come around because our temporary flat has started to grow mould. We all know irs down to a build up of condensation but sadly this shit of a flat has night storage heaters so it will alwas have these issues. I have purchased today an electric heater to see if itll help keep our electric down but also hrlp us out. We also learnt today that the council has yet again failed us. Our homeless officer rang the department and learnt that despite having higher rate dla, I hadnt been flagged up as an even more urgent priority for having a fit, safe and stable home. Thankfully this has now been done and should help us move quicker. Bloody hope its soon. Five days till the wedding aahh 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

Little Thing Mean A Lot

I just want to rant first to get it out the way. Cornwall Council literally should be under the definition for complete and utter PRICKS in the dictonary.

2 days ago I looked on our account to see what position we were at for the 3 proporties we were wanting for this week. We noticed that 1 had disappearded abd yet it was still stating we had made our maximum bids for this week. So the usual pattern happened, i emailed them telling them how pissed I was that something is wrong yet again. They replied stating that actually there is no issue and that we had still bid on the 3 proporties and they were still there. So last night I re checked the system and oh still not there so I took a picture and re emailed them stating if its still there then why has it still vanished, i wanted answers and ASAP as this weeks bidding was shutting at midnight last night. Funnily enough i had no reply, untill today. They said that actually, the owner of the proporty had decided that they didnt want to let out the flat anyone and had been removed, yet on the system they hadnt re allowed us to bid on another 3rd property meaning that now this week we have missed out on the chance to get out of this flat. Lets just say the council have had the full blown of me today. Ive questioned how they think they can get away with treating us like this. Asked them why they said we wouldnt be here long and yet 4 weeks on we are still here. Thats now nearly 4 weeks on that uve not been able to have a shower. 4 weeks that ive been isolated in this flat because i cant get my wheelchair in and out with me in it as there is steps and that 4 more weeks that our family has been torn apart. Ive questioned them how they would like to be honless for 4 weeks now not knowing where you are going to end up and worst of all would they allow theirselves to live in a flat that is unsuitable for them and has not started growing mould. Perfect. lets just say im still waiting for a reply!!

In other news, ive been buying more presents. Not for my other half this time but for Dixie. We know that we will be missing her first birthday and it fucking sucks. Each time i think about it i cry, u wouldnt miss ur childs first birthday!! So anyway ive been buying her presents. 2 that we are sending her in the post. 1 of them being an edible dog friendly birthday card and also a birthday cake thats dog friendly. Weve then got all her ither treats and toys stacking up ready for when she gets home as no doubt we will b missing her first christmas too so they shall be joing the pile on the side.

Tonight i have lit 13 candles on the window ledge because scarily and pretty soon myself and my other half are getting married...13 days to be exact ahhhhhh

Also, finally, we are hopefully meeting with our new donor on Monday to see if hes happy with who we are and if so, to sign contracts. All being well then, next Thursday we are restarting the journey of becoming a family. Yay.

Well, im off now, bloody tired!

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

Good Girl Gone Bad, Pissed, Annoyed, Fragile

Wow where has the last few dyas gone again. As you may have seen, the title is full of sarcasm and realism.

Lets start with my lungs and health all rolled into one. First off my lungs, ive had a really bad infections this week. On Friday i got put on more antibiotics and steroids put up to 40mg. Over the weekend i got worse and by monday i couldnt talk. I pushed my luck and went to the gp as really didnt want to go to hospital. My oxygen levels were 92% and i was really struggling. The doctor wanted me to go to hospital but we came to the compromise that we would increase my steroids even more and hope for the best. He said if by Thursday i was no better i had to go see them again. Thankfully, this morning all was better and my oxygen levels were back up to 95% and i was no longer nebbing every 2 hours.

The next bit of health was with regards to my bones. I had my second dexa scan after i had one 3 years ago and got told i had osteopeania. Thankfully as a whole the results say that ive not gone into the osteoparosis stage BUT my femur has shown some deterioration and my spine has shown it is crumbling pretty bad. Great.

Ive also had another pain team consultation and because ive not been able to decreased my codiene and when i have ive needed more morphine theyve doubled the dose of my morphine patch. At first i felt ok but now as the evening is going on im feeling very spaced out and a little weird.

A change from my health, to a friends health. Remember i mentioned a few weeks back about a very good friend who was super poorly, well things started getting better and even got to the stage she managed a few hours off oxygen and walked a little. Sadly though the next day she was extremely poorly again and has since been on the ventilator again for the past 2 days. I really feel bad, wish i could do something to help her. Hope she starts getting better super soon.

My poor other half bless her has had a bad few days. Shes been so worried about ne that its messed up her mental health a little and has sort of gone tunnel vision. Shes dropping lots of things, not really understanding basic tasks and unfortunatly yesterday somehow managed to leave the freezer door open slightly and 3/4 of the food defrosted and either had to be chucked or cooked. Ive tried telling her that its ok. No1 got hurt. No harm has been done and not to worry but she still feels really bad bless her. What annoys me the most is that her parents havnt given her basic life skills for living solo. She doesnt know the basic things about life and with me being poorly at the moment i really dont have the energy to actually guide her. Im trying but its making me very exhausted.
To cheer her up though we went charity shop shopping today to get her some new clothes and for her to have a change of enviornment.

On the wedding front, bloody hell its coming around far too quickly. On Tuesday we went and got another gift for a very special boy who will b walking us down the aisle and carrying our rings. We made him a build a bear and purchased a wedding tux to dress it in hehe.

Well my new morphine patch is really knocking me out so im off

TTFN

XXXX

Beyond The Imaginable

Just to warn you this post will be as scatty as they come.

Firstly, randomness; ever seen a cow nebuliser machine, i have and thanks to my addiction to ebay i am now the proud owner of a new cow shaped nebuliser machine that i have named Daisy. She lives next to my seat in the living room so i now no longer need to have to walk backwards and forwards to the bedroom just to have a neb

Secondly, joy and excitment; as you are all aware, we had a sperm donor who was helping us loads to try and have a child, sadly though the funds for travelling back and forth from Cornwall to Dorset was coming near to the end, and the donor had decided the only day he could do to help us was a Monday, which is near on impossible to have every month when you aim to go on your highest fertility peak, so we began the hunt for a new donor, who we have found. Or shall i say they found us. They libe in Plymouth so far closer and he seems very nice. Been chatting to him on facebook and he has a nice manner about him and hes agreed to help us as he feels we will be fantastic parents.

Thirdly, anger; the council tried to pull a fast one on us again, but believe me they are messing with the wrong person. Yesterday i had rang them to add a new local connection to our file. When i logged in last night we found out that our account had been closed and we needed to reapply. I done this to be on the safe side and today i contacted them to ask them what they were playing at. Their answer then was that because we had moved address we had a change in situation and that our banding would drop. Well, i asnt going to let it as i told them this address is an emeergency home given by them because we are homeless, 3 emails later full of massive comments of how inappropriate this flat is and how they are screwing us around and the higher ranking team contacted me back. Suprise suprise, they wont now change our banding. We will remain at a band B. Good!!

Finally, familied; on wednesday i mentioned to my other half that maybe she needed to arrange a meet up in a nuteral place for her and her sister to talk as its getting rediculous and sometime in the future they will need each other and they would want eachother in their lives. It seems to have gone well from what i can gather, just my other half is upset that not only will her sister still not come to the wedding, but she said we will look silly because were not wearing wedding dressing. She also said that my other half should get a job and that she shouldnt be looking after me and to top it off she said its stupid us having a child when we cant afford it. Thankfully my other half had said that actually infact us moving out on our own has made us better off with money. It soo shut her up.

Well i best be back to my knitting, got a fair fetw amount of nicu hats that still need making

TTFN

Xxxx

Skywire

So being subborn and not letting my health control my life, I saw a voucher on Groupon to go on a Skywire. This particular one is at the Eden Project and is 660m long and goes 60mph. perfection. it was amazing. I felt free and unrestricted. though I had to have help because of my rubbish muscles because I couldnt get into the Harness very well. I hope the video works as it was great and if you ever get the chance you should do it

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

Moving Forward

Yesterday ive finally got to a pain team appointment. Ive been having chronic on going pain, not just for my hip but because of the myopathy from the steroids. Unfortunatly at present no intervension is possible unless its with pain releif. Ive been maxing out on paracetamol, tramadol, codiene and oramorph with little to no effect so now ive been started on a tens machine which is hooked to my hip 24/7 and i turn it on for 1.5 hours every 4 times a day. Ive also been started on bupanorphine patch ontop of everything else. So far theres been no change other than the bupanorphine knocking me out and the tens machine causing pins and needles down my leg. My life seems like such an adventure lol.

Ubfortunatly, my friend who I mentioned a little while back, has remained in hospital and had started rehab and moved to a ward, sadly though today she has had to be taken back to intensive back and has been reventilated, really hope she continues to fight through this nasty infection that is still pumping through her body.

Weve had regular updates with regards to Dixie being at her foster mums. Initially we thought we have had to put her in the kennels as she wouldnt stop crying us which was resulting in noone sleeping. The foster mum had spoke to her husband and they decided that because she wasnt like a normal foster dog they looked after, they would let her upstairs in their sons room with him and suprise suprise, shes aparently the perfect house guest which is amazing to hear. So much so that the foster mum even felt she could let her off the lead over the feild today. Its lush to hear that shes doing so well. Just hope she remembers us when she comes home.

Thats all for now

TTFN

XXXX

Mixed

Now that ive got internet back for a little while and can catch up on lifes happenigs over the last 5 days i figured i would update u all.

On Saturday, our friends came over to help mover our rabbits and their homes over to the new flat. First stop tho was lidl as we needed a much. After all this i was so tired i could barely do anything so my job was to look after their son. Figured it was good enough and not to intense as i was beyond tired.

On sunday we had a very early start. This was the day we sadly had to say goodbye to Dixie as she was off ot her foster mum. To whom is absolutly lovely and has kept us updated daily. Sadly dixie has cired on the evenings and her foster mum aparently went and slept on the sofa with her. Feel so bad for her having to do that.

Amongst this on Sunday, we went via my sister to have snuggles with the nephew and to give him hes halloween outfit and also went via mums for a roast mmmm good stuff.

We had to go to the old house on sunday evening when we finally got back to cornwall to fill the last few bits of or kit and take them over to the flat. I think we got to sleep at 1am and had to be up by 730 as we had to go via the house on the way to my hospital appointment.

My appointment was with regards to the lump in my mouth. Aparently it is very similar to the one i had on my lip last christmas but much bigger. For healthy people they would be out under a general and have the whole gland taken out but because i stop breathing with generals hes going to try a different version. He is putting local in my mouth and taking off the top layer of my lump in the hope itll cause it to stop growing and even shrink. This is happening on the 22nd of this month. sadly though if this doesnt work ive no choice but to be put under.

With regards to the council we have finally been put up to a band be as they have decied weare and urgent priority to needing a home. Perfect

For now though we are settled in the flat and a lot happier than we were in the house.

im offski now though ready for pride of britain.

TTFN

XXXX

All Getting Too Much

This weekend is that last weekend we have in this home and to be honest I bloody glad.

I really feel sorry for my girlfriend, shes never lived in a home without her parents and theyve not given a flying fuck. Theyve not cared at all these last few weeks for how she feels. Bearing in mind she suffers severly with anxiety and depression.

As of today, her parents have left the house. Though they will be back as theyve left lots of shit behind. So we are here on our own untill Sunday.

Weve only had one friend who has helped us A LOT and we cant thank them enough. Whats really pissed me off is that initialy my girlfriends parents said that they will fire a van and move our stuff and their stuff. Then suddenly today they rocked up with a van and we werent allowed to put any stuff on it so im blinking glad that over the last week we have slowly been taking stuff over to our new flat.

Tonight they came back quickly to get something and then left whilst shouting bye from the bottom of the stairs. It wasnt a nice goodbye with any effection for my girlfriend at all and from past experiences at my end, when you leave tje family home its extremly upsetting and yet her parents actually i re phrase that, NONE of her family have even bothered to ask her how she is. I think its disgusting and its completly uncalled for.

Till this day aswell they are still treating us like we are five stating that we cant fill some holes in the wall from where we took our stuff down...bearing in mine 10 mo ths ago we decorate this room and had to fill in holes then...and if they think we are still children, you would think they would ask their own daughter how shes coping but no!

On a lighter note, yesterday we had our homeless officer contact us to give us an update. My doctors, ive no idea which one out of them all have finally decided to send in a medical report and the housing team have stated that we are a urgenty priority to be placed into a long term home and we have been bumped up to a B band so fingers crossed not long and we shall have our own home officially.

On a safer not though, weve only 2 more nights and one long day left with Dixie. I was sorting her stuff out earlier ready to go to the foster home abd my hesrt was breaking. I hate the fact that my girlfriends parents are being so nasty as to not have her meaning we have to put her in a home 3 hours away from us. Im gutted. I mean come on, you wouldnt purposly give up your child because of a housing situatio  so why are we being forced to give up our puppy. I hate it. Just got to pray that we get our permenant home pretty bloody soon.

Because my girlfriend is clearly breaking down, ive done a little suprise for her. Ive made a card on moonpig to welcome her to her new home with me and ive also ordered some personalised cup coasters with 4 pictures on. One big one of us 2 and the  3 little ones of Dixie so hopefully thatll cheer her up.

For now though im off as im wasting precious time with Dixie

TTFN

XXXX

Overwhelmed

Just woke up after falling asleep and its all abit weird in my head. So much has happened and its now getting to me.

Firstly,my friend i told u about is getting better. Shes now out of the critical stage and back with us talking and growing strong. Thank goodness. So pleased as was ubber worried.

The next thing being that Dixie has finally had someone say and be willing to foster her whilst we are in our temp place. Sadly it is 3 hours away but weve just got to be lucky that shes found a home which equally means we dont have to give her up long term as that would be heart breaking.

Next up is this bloody flat. I hate it. Its horrible. Its not ideal for me at all. To top it off the landlord is an ass. Weve begged him for Dixie to come with us and even said we would pay for cleaners to come in when we leave but no. He refused to sort out the water in the kitchen as for the last week weve had none. So i had to get on the floor to look and sort which is never good as i cant get off the bloody floor so my other half had to help me. Next up we went there to day to drop more stuff off and the bloody bay window roof is being ripped out and we hadnt been told. Im pretty sure we had to have 48 hours notice and yet we had none. We also still havnt received our electric key to be able to put money on the electric. We got told last wednesday 24 hours and we will have it. But no,again nothing. Which means weve £3 on the meter, a freezer full of food and i cant neb. Grand. It all just seems a night mare.

All of this and im also shitting it about money. I know we will be fine but im a huge ocd worry bean about money to the extent i have a book, write what goes in and out and what weve left for the month and then each day i write how much has been spent and then calculate how much remains. At the moment it seems like we are £200 better off living independantly but weve not hade the correct amount of bills yet so all that could change.

Im also confused as to whats happening about my immunology infusions as ive not been contacted and its been nearly a month now.

The wedding is coming up and i know longer have any idea of what is left to buy as its all in stupid boxes

My other halfs 21st is also coming up and im worrying that we wont have the money for me to make it special for her.

To tope it off, today it seems like my pharmacy wanted to kill me again. Remember the error a few weeks back about my steroids. Well i made a complaint and that got sorted BUT today, as usuall walking out the door i checked my drugs so i didnt drive all the way home and see a mistake. I opened the bag and saw the words Sando-k and though what the heck i dont take that. I take phosphate. Took it back in and said er uve given me the complete wrong drug. Her answer was "i though it was strange when i was second checking it" i replied saying well its a gokd job i know my drugs else this time next week i could have been dead. Its not like it was a simple error or omeprazole or anything it was a potential fatality error. Its shocking.

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

Small Update

Today I was meant to be going for a hospital appointment for my hip. Sadly though it didnt happen. The consultant rang me to say that not all the CT scan results had got back to him so he didnt want to drag me all the way out there to only give me half the information. So i was pleased they rung just annoyed were nine the wise for whats going on.

The lump in my mouth has become rediculously large. Its now bigger than a golf ball and i can barely eat anything tyat cant be sucked or anything that not liquid. Have to wait another 2 weeks before i even get reviewed let alone operated on.

With regards to the housing situation, well thats stull just as bollocks. Weve heard no more, still not been increased with the banding. My partners parents are continuing to be nasty towards us which is causing my lungs to be shit. Woke up this morning and my sats were 93 and i had so much pain in my lungs...

Lastly, my friend. Things arnt to good at all. She did end up needing ECMO because she was so poorly and they then took her down gor open heart surgery the next day. Things are not good though. Theres lots of complications going on and although she got off the ventilator yesterday, shes had to go back onto it todag and shes starting to deteriorate again. Hate that so many of my friends r suffering because of crap health.

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

Quick Update

Ok in short, im still very much depressed, if not worse, im still packing and we still have no where to live in 2.5 weeks.

To top things off, out middly rabbit has now come down with a respiratory infection so hes now onnantibiotics twice a day. Something we really didnt need right now.

There has been progress though, tomorrow at 2pm we are having an interview with the homeless team. We blinking hope that they can actually do something for us. So far they seem great though. Today after the appointment was made they faxed my GP asking for a full report about my health which sounds positive though annoyingly theyve not received the update from immunology about my new treatment which we really could of done with. Though ive left the secretary a message and i just pray they can help us out also.

TTFN

XXXX

Fumming

So, today my partners sister and her girlfriend have travelled down from Bristol to help their parents redecorate their new home and move bits and pieces over there.

I am honestly glad that in the last hour they have only just got home here and weve been up in our room. Though no suprise there.

This isnt the bit im fuming about though as they can do what they like, the bit thats really pissed me off is the fact of, im there stood in the bathroom filling the jug up with water ready for my hot chocolate -baring in mind the light it on and water is pouring into a metal jug which in itself is noisey- and my partners sister comes up the stairs and slames the door into me, knocks me off balance and hurts me and all she says is "oh" and walks away.

Im not impressed at all. The way she is treating me just because me and my girlfriend have set a date for the wedding and they arnt invited to the ceremony is absolutly rediculous.

She knows about my ill health, my unstableness and my muscles disease and yet after doing all that to me she cant even apologise and then leaves me to struggle to regain myself.

You wouldnt have though that she was in the medical professional because shes got no care to her at all and to be honest, i dont even understand anyones comprehension for doing things that hurt people for no reason. Yes granted she may not have seen me, but she could have still said sorry and she certainly could of helped me out following it all.

Rant over

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

New Adventure But Yet More Stress

What a friggin hell bound few days.

Spoke to our housing officer yesterday who has asked us to get a letter from our mother in law stating we will be homeless by October 6th. 8 hours after i had asked for this letter, it still didnt get wrote so as  you can tell i was pissed. My father in laws answer was well they arnt going there till wednesday so theres no rush. They finally done it at 10pm last night and asked if it was good enough so my partner said yes. Nothing more or less came from her mouth yet her mouth still insisted on saying "oh well dont sound to enthusiastic by it then". I mean come on, are you for real, this is an official bit of black and white paper saying that in less than 4 weeks me and my girlfriend have no home.

On top of all this, our housing officer has stated that they should have given us more notice, what theyve done by leaving it this late is complete unfair...but to be honest, both u and i knew that.

We may have to temporarily get rid of Dixie also which we are gutted about and thats basically because 95% of temporary accomidation doesnt allow animals.

On a semi good note, i had another hospital appointment today with regards to my lungs and immune system. Not sure if you remember, but 3 months ago i had bloods taken, then 6 weeks post that i had an injection and then another set of bloods to see if the injection work. As i had another 3 infections i knew in my heart it didnt work. Aparently my first set of bloods showed my immunoglobbins to be at 38 (these are the bits that fight off colds and infections). Once i had the injection my level should have atleast trippled to 114...mine went up by 4. Yes FOUR. My level was a grand total of 42. perfect. So for some unknown reason my immune system doesnt want to function and even the flu and pneumonia injections i get every year, my body seems to be resistant to which explains why ive still had flu and still had a stupid amount of infections within the last year alone. So now i guess your wondering whats happens about this. Well, u know these amazing people who give blood (my girlfriend and a very good pen friend L(u know who u r)) the blood they donte get divided into three parts, the red stuff to aneamic people, the clear stuff (plasma) to people with low platlet count and the straw coloured stuff to people like me. This is their immunoglobbins so essentially its their immune system. Myself and my other half have chosen to do the treatment at home for atleast once a week for the next year. We will be taught how to administer it through a needle in my tummy and two syringe drivers. I will be gettong 2 very large boxes of fluid donations (yuk) delivered to me to make me better.

But heres the sucky bit, because of our housing situation, we have to do the first 3 months at hospital. Purly because if we got put in a hostel, for one we cant have the drugs delivered there and two if andrug addict sees ive got needles we are open to being attacked. So yet another shit pain in therear we have to deal with.

Well for now. Life goes on and i have to be extremly greatful that not only go i have my wife to be being enthusiastic to help me administer my immunoglobbins but also i have to be extremely greatful for the amazing people that give blood. Without them my weird immune system would kill me!!

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

Its Official

We had the council man come around at 10am as planned today to check over out current home...during this meeting my partners parents had to decide on whether they wanted to take the bungalow they had been offered. Up untill the moment the council man her parents were still not convinced they wanted to move...and then once he left, they came up and told us they are moving into the bungalow. This now means that myself and my partner have to be out of our current home with in 4 weeks.

We r then officially homless.

Were going to start packing because either way we have to go.

Ive so many emotions right now. Im also scared for my health.

TTFN

XXXX

Whens It Going To End?!

My title is perfect for this present moment in time.

Today, I finally managed to get an emergency appointment at my dentist for the lump in my mouth. I was not impressed though. My appointment was at 1210. I got there at 12 as I hate being late for things. Next thing I know its 1245 and I can hear them nattering about their upcoming weekend so I went to the desk and said not being funny but its pushing on and ive another appointment at 1pm. So the dentist goes back to her room fiddles about and then comes and gets me. I sit in the chair and she said right today we are doing a filling...i stared at her and said i think your not. Im coming as an emergency to get my lump looked out. Finally we get down to business and it turns out i was right. Its something called a Ranula. Unfortunatly though I have to be refered to a surgeon to have surgery to not only remove the lump but also the offending syliva duct and glad as for some unknown reason its become damaged. She also said i need biopses because of how angry it looks...stupid thing is though she said ill here back from the surgeon within 8 weeks. Im not happy especially if it turns out to be Cancer. Im not looking forward to it because what could be a day case procedure cant happen for me. I stop breathing with aneasthetics and need ITU input. Great.

In other news. My in laws went and viewed thier potential new house and when they come back they were happy about how it looked. We now have a man coming on friday to sort this house out and if they like their new place they sign the contract on Friday too. They then get the keys and can move in on Monday. We all also have to be out of this house within 4 weeks. Great.

Im also having a crap day as this time last year i had my second respiratory arrest and im getting really bad flash backs.

Thats all for now

TTFN

XXXX

Still ... Blurgh

Soooooo Things are still crap here. The council have stated they wont help us any sooner untill we are actually homeless because there are a total of 28000 people that need homing and aparently we arnt a priority. Something isnt right here. Not only are we not being helped whilst we have being mentally abused but my health needs dont help us for anything. Not only this but because of my vunerability, according to the charty shelter, were meant to be priority but we arnt we just dont get it. On top of this, i woke up this morning dripping wet but freezing and and giess what my temperature was 38.1 and my peak flow is 280 post neb. Gp says ive got another infection so higher dose steroids and more antibiotics And lastly todah for shit news...the lump that started in my mouth under my tongue over the weekend is now about the size of a golf ball and the dental hospital who i was under last december for the lump on my lip for some reason wont give me an appointment Im so worried as ive had 2 tumors in my body now and it looks like this is a 3rd. Im worried that this lump could be the big c...know idea where i go from here if they wont get me an appointment in the dental hospital. On a good note though, i have the CT scan for my hips last night and will get the results on the 22nd I leave u with the yummy picture of my lump.yum.

TTFN XXXX

Fear

Ever heard of a song called "here is the fear" by Kareb Jones!?

I have!! She sang at my Confirmation when i was 17 and this song has stuck with me. It help me when i was in a house fire a few years ago and it has also helped me when i was in a relationship that turned violent.

It remains with me till this day and i keep playing it in my head right now.

the reasoning behind this is because me and my partner are still in the dark for whether we could be homless for good in a few weeks.

As you know, last friday my partners parents got offered a bungalow to live in instead of this house. Theu have voewed the outside and have measured up all their furniture and are currently waiting for a phone call so they could view the inside.

We of course havnt been told this as such, we just happen to be in the next room and they are talking about everything.

I keep fearing that we wont have anywhere to live. That mine and my partners health is going to deteriorate drastically through all the moves and money worries. I also fear that all this will put me in hospital.

All i want to do now is end my life. If i want around, my partner wouldnt have all thos hell from her family about us. She wouldnt have to move and have the threat of having no house and she would be stable mentally...today i truly cant be botherd. All ive done medication wise is my morning tablets. i dont want to take anything else. If i no longer exist within this house then there is no strain on anyone. No hassle for who i am and no stress for who my partners with.

Fear is the biggest mental worry a human can ever have.

Today its hit me hard

TTFN

XXXX

Rock Bottom Has Hit

Following the rubbish moments from the last few days, today just tops it off.

Downstairs eating breakfast and the phone rings. We think nothing of it because it wasnt for us. My partners dad comes in saying its the council, they had been offered a house. Of course we didnt believe him because theyve been bullshitting for weeks now stating they have been offered places...untill my partners mum comes in still on the phone and it turns out this time they were actually telling the truth.

We had to go out to collect medications and to collect our thoughts about what the heck we were going to do.

On our return home, threre was post. Post from the council for me and my partner. We opened it in anticipation as it was the result from out tribunial with medical letters to make us a higher priority...BUT theyve refused us again. I mean how much worse can mental games, drug errors and self harming be and thats just a very small amount of whats going on.

To be honest we are screwed. My partners parents wont talk to us since theyve been home so we have no idea if they are actually taking this house or not.

The ironik thing is, 3 weeks ago, they refused to ring the council telling them we cant live her anymore as they couldnt cope. They didnt want to take our home away...yet behind our backs theyve been bidding on properties and now potentially making us homeless in a different way.

Weve got another 28 days to send our result to tribunial again so we are hunting for more evidence for us needing to go. I have also wrote a 2 page letter to our local MP to see if he can help.
Ive also been hunting the net for anyone else who can help and ive actually stumbled across a housing association company that specifically helps the young, disabled, frail and mental health community members with housing issues so ive emailed them our situation and im praying they can help  too.
Time shall tell

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

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

Annoyance Yet Happified

Random title dont you think!? Well all is about to be explained...

Ive not blogged in a little while because ive been struggling to get my head around a few things and ive done my usual trick. Ive bottled it all up.

Continuing from my crappy chest,  it turns out from my stutum results i have a fungus infection. Im going to send another sample tomorrow to see what the exact treatment can be as i dont want any old tablet chucked my way.

On Thursday, my sister got taken to the maternity section of hospital because she hadnt felt her baby move in atleast a day. Whilst there they decided to do a sweep and had said if labor hadnt started by the Friday they would have to induce. Guess what, it hadnt started. At 1030am she got give the pessary to start off her contractions. By 2pm she was already 2cm dialated and by 5pm she was 7cm. The midwife called the delivery unit to get hee moved over, and by the time she got round there she was fully dialated but got told she had to wait to hold off pushing as they hadnt nothing ready for her. Sadly she had to be cut and needed stitches after the delivery, but thankfully she delivered a very healthy little boy named Zak and he weight 8lb 7oz the little chubster. As you can imagine ive spent a small fortune on the little dude. We already gave a small box to my sister in july which cost around £30 in clothes and my and my girlfriend have filled another box of which in total there are 46 presents but half of that are wrapped with multiple items. We also got Zaks brother and sister from a previous partnership a present and card as we didnt want them to feel left out and start getting jealous. Well, we are off to met the little man tomorrow and im uber excited.

In other news...more has kicked off woth regards to my other halfs parents.

My girlfriend had made another cake for a client over the weekend and we took some pictures for her page. This resulted in us turning on the pc which it hasnt been on since the 27th july which was when i last used it.

When my other half switch it on, the start up screen had been changed and the name of the user had been ultered...which has meant that my other halfs parents have been in our room and snooped through our stuff whilst we havnt been here. Im fuming as theyve no right to be in our room whith out asking and they certainly have no right to be on my pc. Theres nothing on there for them and its not even their daughters.

I know it might seem pathetic, but because we are at my sisters all tomorrow, i am going to be sticking a small piece of cellotape to the top right side of the door tomorrow and ill know then if theyve been in our room. Like ive said, tomorrow they have no need to be in here.

So, like my title says, its a tale of two stories.

TTFN

XXXX