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

XXXX

Anything Else Want To Come My Way?!

Sorry for not posting yesterday but I was so overwhelmed with information I just couldnt bring myself to sharing it.

I was at Musgrove park hospital in Taunton for a MRI on my hip.

I had to be there for 0920 in the morning as first up i had to have a massive needle poked into my hip joint again to have dye pumped straight into it. This was done under xray guidance. Initially all was going ok, then suddenly I felt very sick, went mega dizzy and from what i can gather, the colour drained from me and i went spaced out. Next thing i know both the nurse at my head and the consultant injecting me was asking if i was ok.

The whole team on this first stage was fantastic.

Following this i then went round to the MRI scanner. I got told that i would only be about 10 minutes...2 and a half hours later im finally back with my other half who had been going frantic and worrying mega because i had been so long.

off we toddled to the cafe though where i had a coffee to wake me up again for the journey back home. Fingers crossed itll only be a few weeks and ill have the result and find out what treatment i need.

Once home i had to ring my GP to update them on the new drugs ive started and i also wanted to check both my sputum and blood tests that i had done on Monday.

I was so pissed. The receptionst told me that yes the result were in but i had to physically come in to see the doc to discuss the result...and the next nearest appointment was 3 weeks away. I obviously refused this and said ill sort something, but in the meantime could the doctor ring me so i can tell them about my new medications...cheeky me then mentioned the blood results to the doctor when they rang me back and bloody hell im friggin glad i did. It was with regards to my phosphate again...and it remain critically low. Ulyour levels are meant to be 2.4 and above...mine was 0.6 so its no wonder im struggling so much so ive now been started on phosphate supplements and need regualr blood tests

As youve probable guessed following all this had 100% exhausted me so i went off to sleep...only to be woken up at midnight having a massive allergic reaction...gradually throughout the day i had been getting itchier and itchier and then by midnight i also had a full body rash. I could put my finger on what was causing it annd initially i thought it might have been the uniphylin...with taking this mornings dose and having no reaction it then clicked, it started straight after i had the dye put in my hip...and had been getting worse throughout the evening making me feel shit, so i guess thats another drug i can no longer have. Perfect.

I woke up this morning in agony though. I know the consultant warned me that with certain people, depending on what hip injury they have they can have bad pains through out the whole leg for the next few days..mand boy was he right. I could barly walk to day and i cant bend my knee without crying out in pain. I just hope it doesnt hang around.

Today i have officially made 35 baby hats so my first NICU box is complete. Im going to do another fair few amounts of hats though before i send them off as i want to get a great picture to send into asthma uk to show them the progress...please look through my previous blogs to find my just giving page...we really need more donation!!

TTFN

XXXX

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

XXXX

Excitement!!!!!

Ill get the boring daily stuff out the way first, before I get through to the good stuff. Last night I had a nasty allergic reaction again, my face blew up, was swollen, red and rashy and this tracked down my neck, chest and arms. I had to take 4 antihistamines to get it under control. Thankfully it wirked else it would have been an epipen job!! Up nice and early again to be able to get Dixie around the feild and then get my other half to her new healthy wellbeing class. For us to do medication, physio, breakfast, and pet feeding we had to wake up at 6 and even then we left the house 5 minutes late. Hate that our mornings take so long. After I picked my lovely lady back up, we had arranged for our friend to come around with her little man. This was mainly so that I could give her, her CDs from the naming ceremony of her son a week saturday ago. We all had a slice of cake that she brought around and had a good old natter. I was a little gutted though because I couldnt have a cuddle with her little man because my muscles were so weak I couldnt stand or lift my arms so it would have been far to dangerous and unsafe. I was happy to pull faces and make silly noises to him though. Once our friend had left, we waited in anticipation to hear what she thought of my work. I was praying that she would like them. In the mean time though, we kept ourselves busy snuggled on the sofa watching frozen, which might I add is a blinking good film. At about 1930 tonight, I recieved a tad on my face book which was - "Just got the photo's back from my very talented friend Charlie from Charlie_Warlie Photography, twice now she's taken photo's for me, they are truly beautiful, capture the whole feeling of Tre's naming ceremony. I have laughed, smiled and even had a few weeps at the amazing images. Thank you so much Charlie, if you every need any recommendations I will sing it from roof tops!" I was both overwhelmed and overjoyed with this response. I always doubt that my work is as good as what people say it is, but I guess that people really do like it. Well that was my exciting news!! Untill tomorrow... TTFN XXXX

Past & Present

0530 we were up today, and in a way, blinking good job as I was having a full blown allergic reaction. When will my body give me a rest!? Once all the morning duties were done we had to set off for Bridgwater. I have finally emptied my storage unit after having all my possessions locked away for over two years. Admittedly it was really hard, especially as I had my other half with me and she was finally seeing photos of me and my ex. As soon as I found anything from her, I tor it up, smashed it and put it in the bin. I want nothing more to do with her. She has (or shall I say had) ruined a fair chunk of my life and I wasnt going to allow her to continue that. And honestly, it felt good doing it. It felt as though a chapter has finally been closed and I can officially move on with the most amazing lady in my life. After finally getting home at 1400 we quickly rammed some food down our necks, fussed with the pup and put the rabbits in the run and cracked on with sorting through more of my kit. I finally had to call it quits at 1700 though. My lungs have had enough and I could no longer breath. Thankfully my other half realised how much I was struggling and how much I was coughing with a very high pitched wheeze that she rushed to get my nebs and I sat with them for a little while. Sadly though I am still very twitchy. Im praying that itll shift as next Saturday im meant to be doing the photography for our friends sons naming ceremony and I really dont want to let any if them down. Well for now, Im shattered, bruised and irritated so im going to nod off TTFN XXXX