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

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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

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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

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

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A Few Weeks In!!

A little hectic has to be said for this first few days of 2014 BUT I have enjoyed it - kind of.

Day one started off not so good as my lovely lady had suddenly picked up a tummy bug and from 3 am for a good 12-14 hours she was vomming none stop, felt so sorry for her as she was stuck in bed all day being poorly. Thankfully by the nexy day though she was a lot better.

To start off the new year, we decided that we wanted a fresh start so we have redecorated our room. Annoyingly it has taken a week and me ending up being poorly myself and in bed for a day,but it now looks stunning. We have a paint called malibu beach on three of the walls and on the fourth we have patterend wall paper that is of a charcal colour and has a variety of different birdcages on with yellow birds within them. Ok, it sounds a little strange but it looks stunning. We also now have our lush new canvas painting on the wall that our lovely sister in in law and her girlfriend has made for us for christmas and we also have a butterfly lapshade with very similar bedding that my other halfs parents got us for christmas. So our room is now set up nicely for when im having my rough days and cant leave my bed and it also just generally looks stunning to walk in and see.

I had an appointment today with the maxifacial team again, was meant to be getting my biopsy results but sadly because of the time of year that I had then done, they have been delayed a little. I have to say, not what I was expecting to hear when I walked in there so sadly have to wait around another week or two before I know what the lump was that I had growing in my mouth.

Generally all else in my little life has been great so far this year...touch wood. I have an appointment with ny new lung team in Plymouth on Wednesday so that could be a challenge, to which im sure youll hear about!!

I also completed the start of my photography portfolio today, the 9 photos that I have in there really do look stunning and for once I am proud of the work I have done.

Oh and its official, my sister is pregnant, and I am going to be the best aunty EVER of course lol.

TTFN

XXXX

My Thoughts For The Day!!

Ive been sat here all day as my lungs have been really rubbish abd my new GP seems to be the worlds biggest waste of space and basically told me if I get worse go to the hospital, dont think he realises I would like to be home this christmas...

So with being sat here, my mind has been giving me every worrying thought possible again (yes of course this has been increase by my yet another increase of steroids). My thoughts at the moment are going back to the lump I had in my mouth and my recent biopsy. I get my results on the 6th January so yes I dont havt long to wait, but its still long enough to have everything do through your head.

I keep thinking the worse. Do I have cancer!? What treatment will I need!? Was it just a random growth that wont need any treatment at all!? These are just the three main things im thinking of.

I just wish the 6th January could come around quicker. Would do me the world of good!!

TTFN

XXXX

Wondering, thinking, worrying!!

This week has been the most stressful in a long long time.

It started last week with the doctors and my gp surgery. They decided they didnt want to prescribe my medication to which they decided not to tell me so when i finally got hold of a gp (three days later) my drugs had ran out and i was getting arsy. All would be ok if it wasnt a special ish drug that needs to be ordered into the pharmacy.

After sorting all of the above, i then go off to the doctors to pick up the late prescription and low and behold, another driver decides they want to drive into me. Thankfully i wasnt hurt but i was even more pissed at this point. I get all of her insurance details, name and number and i ring my insurance to start claiming through her. My insurance company ring me back on monday to tell me that, oh the driver isnt insured. Frigging perfect, this could only happen to me hey!!

Also on monday, i had to go back to the dental hospital to have my lump in my mouth rechecked and a date decided for when they want to do a biopsy. There i am sat in the chair and the consultant is making those weird hmm noises when something isnt right. He then goes off to the computer, after a few seconds he cones back to me and asks if i was free three oclock that day. I say that i am and i go back. It seems like they want to get this biopsy done quicker than originally stated. The biopsy itself didbt really hurt at all, he put a numbing gel all over my lip and gum first before jabbing me with a needle to use a local aneasthetic. Half an hour later, three lumps later and four stitches later and my lump has been removed and sent off for testing. The consultabt was a little concered because he expected the 'lump' to be a sac of fluid that would leak out as he sliced it, sadly though it was a solid lump. Once he got the biggest bit out the way, he then found another two lumps starting to grow deaper in my lip and a little lower down. He thinks he got everything but of course he cant promise. I also ended up with four stitches instead of the original two because of how much it had grown since he saw me two weeks ago. All in all the i am glad that the lump has gone. With how my luck has it though, two of those stitches fell out 4 hours later but thankfully there was no bleeding and the two ends have stayed together so ive not bothered going back. I have to go back on the 6th january to get the biopsy results. I really am praying its ok as ive been through this process befor when i had a tumor in my knee when i was 17. Thankfully that was bengin!!

On good notes though, last friday one of my friends had asked if i would take some photos of her 4 month old baby, to which of course i said yes. I took 138 photos and ended up liking 34. (I swear im far to fussy). Amazinly though they have turned out friggin great. So much so i have amazed myself. I sent three sneak previews to my friend on sunday just to show her some results and she cried with joy with how great they are. Im going back over to hers on the 17th to give her the rest just before christmas. Im excited to actually see her face with the results. She has also asked me to take photos next march when its her baby boys naming ceremony. Im really scared about this as i dont no how my lungs or muscles are going to be and ive never done 'professional' photos in this situation so im mega scared.

Well for now, this has been my life. Im off to another hospital apointment tomorrow for my hip and then off to mums for some tea and to exchange christmas presents. Following this im then driving to bristol to see my dad and two friends. We are going to be there untill sunday so its going to be one busy week. Joy!!

TTFN

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