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

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

Muscles

Finally we managed to go out today with our amazing friends to a place called siblyback lake.

It was amazing, the sun was shinning and it wasnt to hot so it wasnt hell to breathe.

Sadly though because life sucks when i got home i couldnt breathe. All i done was walk up the stairs instead of using the stair lift and my sats plummited to 85%. So straight on the nebs i go.

I have then slept all afternoon since.

Once i woke up, my muscles have completly gone. I literally cant sit up. I cant lift my arms at all and im generally feeling like a jellyfish.

I absolutly hate having this disease.

Its utter shit!!

TTFN

XXXX

Busy, Excited, Tired...All In One

These last few days have been very hecric but amazing at the same time.

We did manage to go away which i am so pleased about.

First off we paid a visit to my sister as my other half baked her the most amazing birthday cake ever so we went and had tea with her, gave her all her presents and webt and seen the finished nursery. So excited as theres literally on 2 or 3 weeks left and the baby should be here.

Following my sister we went off to Dorset, Sunday night was just a chill night with a few dvds, relaxing ready for our big day.

Our donor text us saying he was early but it was ok as we were ready and excited. He is so funny as he fitted us in between a trip to the tip and shopping at morrisons before picking up his son from school. Im so glad that he found us as we couldnt have found a better man to "father" our child.

Post doing the deed, we decided to take a random trip to Glastonbury to go charity shop shopping where we baught 8 baby items for £4. I absolutly love charity shops. We then went and had a proper realy banana milkshake with ice cream. Yum...well my girlfriend had a banoffee one but it was still uber lush.
To top off our amazing day, we then went and had a meal at the pub next to our hotel. I really do love spending these little days out with my lady.

On Tuesday I decided to take my other half to Clarks Village as shes never been there before either. We had a lush bit of retail therapy and i really treated her. She deserves it after all hehe.

Over the last few days ive been waking up with really bad migraines again. Thankfully though because i have been doing the over night oxygen readings its been showing that its clearly low oxygen levels that is causing it as they dropped down to 82% most nights.

In other good news, 4 weeks later ive finally cleared my chest infection so i am super pleased. I hate the fact it takes so long to shift but i guess thats just my crappy body.

Well, we find out if we have had any luck with our donor around the 25th July so if you could all keep your fingers and toes crossed for us I would be super pleased as i really cant wait to have a child with the most beautiful girl in the world.

TTFN

XXXX

Yuk

Ok so yet again things are crap.

All weekend ive felt like shit. To put it plainly.

Saturday my oxygen levels wanted to start dipping and by last night i was down to 89%. My pulse was up at 160 and i was trying to be sick...no that sounds wrong. Basically following my tummy surgery it is impossible for me to be sick so my body was going through the motion of being sick but no liquid from my tummy could actually escape.

Ive literally been a vegetable in bed all weekend because of feeling so poorly and im also suffering from yet another migraine.

Tonight i was checking my oxygen levels and they are now sitting at 86%.

I thought my sats monitor was playing up initially so i put it on my other halfs finger but it came up at 98% so its clearly just me.

Im refusing to be admitted. I cant. Next week we have something really important we have to do and im not missing out on this opportunity.

Really wish my lungs would get a grip and give me a break

TTFN

XXXX

Uncertainty

Its been a few chilled days here in our house hold as weve had a a bit of a rough time health wise for me and weve had a lot of paperwork to fill in.

With regards to health, since Alton towers ive had an infection *suprise suprise*. Sky high temperatures, chest flaring, sats and peak flow down. So i went to the doctors last week to catch it early, steroids went straight up and i got put on strong course of doxy for antibiotice. I done a sputum sample to catch which bug it was and although i got told i just know its a type of pneumonia again. Today i woke up gasping to breathe and sats were back to 93%. I dropped my steroids on Monday as it had been 7 days and i didnt want them high again but with an emergency visit to the gp again today they put them back up for a further 7 days and given me amoxicillin and another course of doxy so fingers crossed i start feeling better again soon. Ill do another sputum sample as sokn as my airways are open enough to cough a reasonable amount up.

With regards to paperwork, since my partner had the carers service team out for her last week, weve filled in a form to apply for another grant to be able to have holidays or hobbies whilst im in the state i am. So fingers crossed we can get this.

Weve also had the paper work through from the council for a welfare assessment. It was 4 pages long and i also sent in an addition a4 piece of paper of extra evidence as they didnt provide enough space...talking of rubbish space, they asked for a list of my nedication but only gave one line...an i had to provide another piece of a4 paper filled from top to bottom with my drugs...think they will have learnt their lesson there!!

Well, tomorrow we are going to try and venture out to Liskeard to meet onet of our very good friends and their son. I wanted to get some more fluffy wool for a personal project im knitting and we decided to meet up with them too. Ive warned them i have an infection especially as her sokn is only 11 months so to be nice i will be wearing a mask so that heres no risk of me passing on my pneumonia!!

Aside from all that paperwork, i have yet another form to fill out for a grant through the charity called the muscular dystrophy campaign. I had a re referal done with regards to my self propelling wheelchair but sadly i dont tick all the boxes to get any form of electricalness for my current chair so theyve put me through to the charity. I just need an assessment and letter wrote on headed paper saying i would be a suitable candidate to be given a grant to and i can fill in the rest of the form. Really praying i can do this by the end of july as their next meeting is augst 8th.

Well, fingers crossed i can get out tomorrow and i get my assessment.

TTFN

Another Appointment And Another Bit Of News

Firstly I forgot to say yesterday that I had the doctor ring me to update me about what they have found about my constant low Phosphate and that being: they need to do one more blood test to rule something out but ultimatly Im going to need supplements because my low phosphate is causing ny diaphram to not contract properly which in tern is reducing the amount of oxygen ive got pumping through my body...grand something else I have to battle with.

I also had another appointment in Derriford hospital in Plymouth today. It was with the immunology and allergy clinic. Initially I though this is going to be such a waste of time, they cant tell me anymore than what I know and as a result they cant actually do any more BUT that taught me.

The doctor was lovely, she talked through everything and explained why she had been asked ny lung doctor to review me. Aparently on the bloods they have taken it has shown that I have very little to if no immune system at all...lower than what it should be for a person on steroids so they have figured it is the huge reason for why I am contantly getting infections and constantly feeling poorly.

To see if they can find a treatment, I got given an injection on the spot and I have to have more bloods taken in 6 weeks time. It takes 1 month for the bloods to process ajd then ill get the results. If the bloods r still low following todays injection, I will either have to start more tablets or have an infusion or injections regularly all depending on my results.

She also stated me on a steroid nasal spray and changed me back to my old antihistamines but doubled the dose compared to what I was on.

Sadly though she did tell me that I shouldnt now or if at all every carry children. Not only could it kill me because my body wouldnt cope but half my meds would either harm my baby or cause further complications. Im gutted, there goes our plans for me to carry our first child. I mean its ok coz my partner can carry, but lets face it, its never going to be the same and ill technically never have a child of my own with my DNA etc. Theres always a bomb shell!!

TTFN

XXXX

Just Another Day

Up nice and early today because I had OT coming to measure me up for the stair lift im having fitted. Thankfully thatll stop me falling on the stairs like I done yet again tonight. After all the measuring I then dropped my lovely girlfriend off at Bernados for her 3 hours of volunteering. Whilst she was there, I filled my time with walking Dixie, sorting our flowers out and chucking the dead ones, eating some diinner, nebbing and sleeping. When I woke I felt like absolute shit and rather puffed. As a result I had a quick (ish) dash to the mirror, noticed my lips were blue, so went and got my sats monitor...90%. Bollocks. Quick nebbing session before I had to get my lovely lady again. Thankfully im feeling a little better this afternoon and evening so ill see how I go before I ram any more steroids down my neck. Weve also found another feild to which we are allowed to walk Dixie and blinking heck she blinking loved being back in a feild again chasing a ball. For a squidgy puppy she aint half blinking adorable. Other random things about my life today...my GP receptionist rang me because my GP wants to see me so the had to arrange and appointnent. Its planned for the 28th. When I asked if she knew what it was with regards to, she thinks he said it was because I need to start a new medication. Im baffled as to what for so it should be interesting. And final news for the day to put a smile on your face...today ive lost another 2lb and a quarter in weight so since 6th January this year I have now lots 1stone and a quater and a grand total since the start of my weight loss last August of 3stone and a quarter. I just have another 2 stone to go and im at my healthy weight. Really hope I can do it. Hope your all well. TTFN XXXX

Frustration!!

Early for waking wasnt the word for this morning but I figured because we went to bed so late if I were to nod back off I would have never woken up in time for the big day. Yes, that day that ive been stressing about has come, its the naming ceremony for our friends little boy. We got there around 1pm, my other half set up her cake and I started sorting my camera to allow for the right amount of lighting and to take pictures of the items that were scattered around like napkins, flowers and the naming certificate. People started to file in at roughly 1330-1400 and all was going to play and I managed to get around 150 photos ish. (Ill let you know for sure tomorrow). Excited that I had enough confidence to be able to do these photos, things couldnt stay perfect. I decided to have an asthma attack. Friggin perfect. Sats dropped to 90% and heart rate shit up to 134. I wasnt even going to do my peak flow. I was starting treatment no matter what. Thankfully, a few back to back nebs and all was dandy and the day continued. We flew home for a 45 minute breather before the meal this evening because I was just to exhausted. We had to be back for the meal in another part of Cornwall for roughly 1900. Everyone was atill super nice, and I feel I have now managed to broadened my friendship circle for my new county im living in. The food was really late for coming out, and about 2030, I was starting to feel sluggish again, and as I went to take a bite of my nail (being the annoying nail biting person I am) I notice my nail beds were purple, I instantly jump up to go and check my oxygen levels. On my way over to get my bad, someone walks by me having had a ciggerette, and bang, if I wasnt going off on another asthma attack I was now. So pissed off that ive had two attacks in one day, all I want to do is enjoy my life and hobbies but each time ive just built up to be happy, bang shit gets thrown back in my face!! Lets just say I will be hybernating in my bedroom tomoorow on my computer just editing photos. Nothing more and nothing less as I am adiment I will be going camping on Tuesday!! Although my lungs have given me hell today, I have to admit I am proud of myself. I really was mega worried and scared that I would end up flumping the whole day but I think and feel it went reasonably well!! Thats all from me for another day!! TTFN XXXX P... I forgot to say, the registrar that done the naming ceremony has told myself and my other that she would do out whole wedding and paper signing for £115. Doing it this way with her also means that we could legally get married ANYWHERE. Whether it be a beach or our back garden so we are certainly keeping things in mind for a potential marriage plan!!

Relaxing...I wish

One of these days I will learn to take it easy, I just have to!! I decided that I needed to finish off what I started yesterday with all my kit from storage and blinking heck it has killed me!! But in good news, ive finished it all so I am mega pleased, I just have to do a tip run tomoorow to get rid of all the paper, boxes and crap that we just dont have room to keep anymore. I have to admit it has been tough though. I didnt realise how hard it would be. One because of its a chapter of my life im never going to experience again, I had the most amazing flat ever and it was all mine, a place I could retreat to after id finished work on the ward and chill with my pets. Secondly, I didnt realise how much stuff I still had from my past relationship and it was hard looking back on it all, it braught back some nasty memories. But, its all done now and have my future to look forward to!! In other news, my other halfs sister and her girlfriend have got and purchased me a new photo editing suite in their words "to practice for their wedding photos". Im so chuffed, its a bloody good piece of software, though that still doesnt help sort the fact im still craping myself about doing their pictures for them. On the shit side of things, my lungs are going downhill. Ive nebbed a lot more and upped my steriods in the hope its going to sort me. My peak flow has dropped ans my sats are 92%. Im really hoping what ive done will help sort it as I really dont want to let my friends down for this saturday!! (Oh, and for camping next week) We will have to wait and see!! TTFN XXXX

All Done

Well yesterday at 1230 lunchtime I had the call to go down to theatre to have my fundoplication.

We got told that the op would take 45 mins and that I may need to go to HDU afterwards.

3 hours later and everyone worrying sick, I finally came out of theatre, the oporation went smoothly and they found a heria so fixed that whilst they were in there.

Sadly my lungs couldnt cope 100% and my oxygen levels dropped so they kept me on the ventilator for a little bit longer to help my lungs. Once they picked up I went to recovery and I slowly improved.

I was allowed to get back to the ward at around 1830 so altogether I was out for 6 hours. A lot longer than I was told.

I have 5 holes and a swollen tummy but thats the least of my worries.

Currently im still on oxygen as my oxygen levels keep dipping off it but thatll soon get better.

Im not allowed any food at all for ayleast 2 days so it is pure liquid for me which to be honest isnt bothering me much as even swolling my tablets is hard.

Im hoping to either go hone later tonight or tomorrow depends on how the respiratory team are with me

All is well for now and ill keep you posted.

TTFN

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