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

Frustraition

Today has been the highs of bollocks.

Starting with...going swimming. Figured it would be great to start the day with exercise, that was untill i got to the pool and had a huge allergic reaction as they had put far to much chlorine in the pool.

After that, we get home to find the post man had been abd instantly from the envelope i knew it was the decision for our welfare appeal. They wont grant us a 2nd bedroom despite all our reasonings behind needing it for me and they wont increase our banding as they dont feel that tje mental abuse that we are getting is bad enough to need to move out quicker. They also dont feel i need to be closer to a hospital and they also dont feel that we are isolated within the countryside that doesnt even have a village shop.

Following all this, tonight we have a message from my other half saying that they wont be coming to the wedding despite her being made to go to theirs. their excuse is having a meal at 1730 is to late for them to be out for their son who would be 11 months. Its a joke, all this shit within our house is because we didnt originally invite people to the wedding yet the bit they have been invited to they dont want to fucking come to.

Im feel like shit and just want to cry.

Should have done wat my girlfriend had originally said, just take our two best friends to the ceremony and fuck everyone else as at the moment no one seems to give a damn about how we feel!!

TTFN

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Dont Jinx It

Im not sure whether itll be premature to share even more good news or not but im finally happy that things might be starting to look up a little.

This morning myself and my other half went to the doctors to discuss her tablets. The reason for this is that we want her to be as healthy as possible for getting pregnant and of course we dont want her to be on any tablets that may cause harm to the baby.

The doctor was amazing, he discussed everything. Even things concerning me and i dont even go to that practice. He adjusted my partners medication and said he wanted to see us both in a month to see how we were getting on.

Following the great doctors review, we then text our donor explaining the recent circumstances and asked whether he would still be willing to donate even though it wasnt going to be me carrying anymore. He said yes. He was also very kind to us about the situation and how it has come about which i also thought was good natured of him.

Once all this was done, i had to take my other half to her volunteering job. Yesterday she baked some cakes as it was a birthday at the shop and she made an extra one for us to eat at home. They were friggin amazing. She made the same for my birthday in february and she bettered herself. My lady really does have fantastic talent.

In other news, I had a gentleman from Asthma UK ring me to discuss fundraising ideas with him. Hes amazed at the challenge i have set myself despite my deterioration in health and has sent me all the paperwork to fil in to get started. Once all that has been sent back ill be setting up a justgiving page and im going to try my hardest to raise as much money as humanly possible. We really need to find a better treatment if not a cure for Asthma.

Ive also managed to knit another hat tonight so i have a grand total of 7 now. I fear it still may take me a along time as it really hurts my muscles and joints but i think once the task is complete im going to be so chuffed!!

Hopfully you guys would sponsor me!?

On a sad note today ive had two allergic reactions today and my skin has felt like it has literally been on fire all day. Ive been in agony. I really hope i figure out wjat an earth is causing all these reactions!!

TTFN

XXXX

Typical Day

For me the weekend doesnt really change from any other day of the week. Other than the shops being busy and you see more people walking about the village, its all just another day for me.

I decided last night that it was time for my hair to have a change again. I jeeded a fresh look. Make myself feel good.

So, me being me the minute i woke, i done my usual routine and then we headed off to asda to buy dye.

Although me hair is blonde, i decided i wanted it blonder so we go a bright bleacg blonde. I also wanted to add some colour too so we got a bright pink too. My partner got black. Talk about complete opposites lol.

Once all my hair was dyed blonde, my partner cut it for me, re done my shaven patch and upon my request i got her to put two zig zag lines across my shaven patch. When the pink was ready to b applied, we done my usual fringe bit and also the zig zags. With having pre lightened my hair it now looks friggin amazing. Nice an bright and colourful. Although my partner used the same pink, because she dyed her hair black initially, hers turned out a plum colour which for her looks stunning.

Just doing this though completly exhausted me so i had to go back to bed...three hours later im awake not realising how exhausted i must of been. I do get annoyed by this. For the average person, they would dye and cut their hair after a 6 hour day at work or something very similar and not be anywhere near as tired as me. I do wish some days that my life wasnt like this.

When i eventually woke up properly, i was extremly itchy, so i put on my glasses and i could see why. I was having yet another full blown reaction. I was as red as a beetroot and my lips were double to size. Eventually after 6 antihistames, things started to return to their usual self, and no epi pen was needed but i think if these antihistamines hadnt of kicked in, i would have been stabbing myself in the leg again!!

Ive also managed to knit another 2 hats today so i now have 5 in total ready to send to my first NICU unit. Only another 25 to go and thre gift box will be off to the post!!

Untill next time...

TTFN

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