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