Monday 30 December 2013

Stuck!!

This evening both myself and the other halfs mum were in the kitchen having a right old natter when my other half stood in the kitchen doorway in floods of tears.

I was shocked.

I literally didnt know what to do or why she was upset.

When we managed to get the tears under control, she has explain how my asthma attack last week and me ending up in ITU on non invasive ventilation has just hit her.

Shes scared.

She doesnt know how to help me.

She wants me asthma to go away.

I of course gave her a huge cuddle and reminded her that I am still here, it was sadly just another attack.

I wish I could help sort her emotions with regards to this, but the truth is: how can I? I cant even sort my emotions out with regards to my asthma. I guess im semi lucky as I get to speak to somone when Im next in Birmingham, but what services is there for my other half.

Shes never seen ANYONE have an asthma attack, let alone one as sever as mine where you cant actually manage to breathe on your own.

I hate my asthma, it seems as though its now no long destroying my life but also my loved ones, and as I meet new people, its slowly eating away at them causing them to stress and worry.

Wish there was a solution!!

TTFN

XXXX

Saturday 28 December 2013

Really!?

Today I was hoping to attempt a shower as I havnt had one since before going into hospital, yes I know, nasty hey BUT when it takes so much effort I just cant do it because I feel itll send me straight back to hoapital.

Anywho, even if I was to be feeling remotly ok to have a shower it wouldnt work. I woke up this morning feeling okish and then went to brush my teeth...only to have done something to my rib cage and muscles around the back.

I cant lift my arms now twist or turn. I keep getting twinges that literally stop me in my track.

Not only is this a pain in the arse for my movement but it is also a huge pain in the arse for breathing as I cant actually take a deep breath to be able keep my lung function up and shift my infected gunk.

I am hoping to be a little better tomorrow, I want to be able to sort mine and my other halfs room out so we can prepare to start redecorating and making it lush.

I guess we will just have to see what tomorrow brings!!

TTFN

XXXX

Wednesday 25 December 2013

Just About Enough!!

Why is it when you try and have a great week planned, things always go tits up.

On friday I went to the GP because I k ew I had a chest infection coming. All he said was up your steroids and come back if you get worse...yeah thats great if it wasnt christmas week!!

By sundah all went horribly wrong, 1830 came and I couldbt breathe, was back to back nebbing for an hour, sats were dropping and peak flow plummeting. The other half of course got an ambulance.

The three paramedics must have been the shittest in the whole of Cornwall. Why dont I get the nice sensible ones frkm emergency bikers hey!? Anyway, the paramedics left me at home for a following hour wondering what the heck to do rather than listening to me.

Final decision was made to send me to MAU in the Royal Cornwall Hospital (not Plymouth where I told them I wanted to go because my Consultant being there.)

Thankfully with being bluw lighted straight to the ward the doctora were there ready and waiting and pounced on me withing seconds.

In all the time hanging around though, I was now super struggling and my numbers were far from good and the next thing I know ITU are reviewing me and I was being moved up to the unit.

When I was there, I was taken off the oxygen mask and give  a tight fitting mask with a special drug blowing through it going direct into my lungs which was meant to help open then up. Sadly they gave me half an hour on this and my Co2 was still climbing with retention. I then got put onto NIV as I couldnt manage breathing soley on my own...10 minutes later I had the life support being rigged up next to me as they wanted me on it. I wasnt going to let them, I wanted to fight on my own, I didnt like being on the full ventilator last time so it scared me this time around.

Thankfully by lunch time the next day I was starting to hold me own again and breathing had got easier so I came off the NIV.

Remembering it was Christmas in two days I wanted to come home. Some how I had to get the doctors to take down my drips and allow it. Lets just say it wasnt a good situation to be in...but I done an agreement with the ITU consultant that I would go in a wheelchair to the front foors and be picked up straight from there and then when I got home I wouldnt leave my bed. Ok granted I dont have the drips, oxygen and ventilator anymore if I was at home, but I can get an ambulance and they can always assist my breathing if I needed it.

Agreement made, and I was going home despite what was best for me but I really didnt want to spend a second christmas in a row in hospital.

Yesterday, as agreed I stayed in bed all day other than to go to the toilet and boy even that was a struggle.

I have managed to get down stairs for Christmas with the lady and her family today but sadly I didbt enjoy it as much as I liked, I fell asleep in between each bit of activity and I wasnt really with it at all.

We have more family coming around tomorrow and they have all said they want to see me but I really dont think I can nake it downstaits. I dont want to let anyone down though!!

Sadly in all this my lovely girlie has stuck right by me. Didbt leave my bed side from the minute I went to hospital to the minute I left and has been a pure angel looking after me at home. I have told her though if the things she saw with me on the breathing machine etc has scared her she must say, it is normall and she can get councelling help if she needs it. I feel mega bad though for if this has caused her mental scarring, I know what its like and I hate it let alone people whitnessing it!!

Well heres hoping that I can make it downstairs tomorrow and enjoy the rest of Christmas, I have been well and truly spoiled and Ill fill you in on what I got in another blog.

For now, Merdy Christnas all and I hope youve had a great day!!

TTFN

XXXX

Saturday 21 December 2013

I Forgot To Mention!!

So ive been thinking again tonight and this time its about my hip.

As you all know I went back to see the third consultant two weeks ago to find out about my hip. Whilst in clinic he said he would do injections under xray guidance to try and treat my condition.

I got my clinic letter yesterday and in it, it explains that these injection wont actually be treating it at all, its being done to try and manage my pain.

Now, my thoughts are, do I bother going through the agonising pain of havibg a huge needle being stabbed into my hip ball and socket joint to have more pain when the drug gets squirted into it, or do I just continue with my paracetamol, codein, tramadol and oramorph!?

Im stuck, he admits in the letter I am going to be very difficult to trwat vecause of my lungs.

I dont know what to do!!

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

Wednesday 18 December 2013

Life's Little Adventures!!

Last Wednesday I was at another hospital appointment but this one was for my hip. The consultant was actually really nice compared to the last, spoke to me properly and at eye level, he also spoke to me and not at me and he was very nice with how he asked things to get a good old history. He then helped me onto the bed to do his funky little movements with my legs (I have just realised how bad that sounds) and then he helped me up and back to the chair. All in all he has said because of my lungs and how I react with GA he has said he wants to try injections right inside of my hip socket under xray guidance. Im also not allowed sedation for that because of my lungs. If this doesnt work and sort things out (as aparently I have a tear in my cartilage) then they may have to consider surgery. Because of my steroids myopathy he has said its caused an extra weakness around my hips and each time I fall it weakens it that bit more so all in all its all going down hill.

We then went and seen my mum and her boyfriend and had pur christmas with her. Suprisingly it wasnt to bad, she spoke to my other half like a human and included her in conversations etc. She also suggested we play a game of scrabble which turned out to be a laugh and was also really good so I was pretty impressed.

Following my mums we then had to travel up to Bristol to do christmas at my dads. We finally got there at about 9pm and pretty much went straight to bed. On the Thursday we went up to the cemetry to put flowers on both my nan and grandads headstones, I really wish that more of the family would go there and not just me, I havr managed to go there atleast 4 times this year if not more and thats with living over 200 miles away from them we also went to visit my other halfs sister for a few hours which was a nice little catch up.

Friday was nice and relaxed, we went to a place called snuff miles and took some photos for another competition that I am entering. There is a lush little tea shack at the end of it and we both had a scrummy hot choc with our mahusive prawn and mayo baguette to which was amazing.

Saturday was the most hectic day I could imagine. We went running around trying to find a cheesy christmas jumper to which was an epic fail. After that we then had to run around to my friends to give her her christmas presents and have a munch on mince pies and cream. Yummy!! Half an hour later my dad was ringing me saying we had to hurry up as they were at a pub about to have a meal and they had saved us seats. I was not impressed at all!!

Sunday wasnt a bad day, we continued our hunt for a christmas jumper and then went to meet up with another friend of mine. We took her off to a nice little resturaunt called the masons arms and we had an amazing carvery and ice cream. Scrummy. We then had to dash back to my dads to head back to cornwall via my sisters to exchange presents with her so boy hasnt it been a bloody busy week.

On exciting news though, my sister rang me to tell me shes pregnant and we think shes due in June. She has her first midwife appointment on the 3rd January so we will no a bit more by then. Really pleased for her, I just hope I get to see the baby often so they actually know who I am.

Since being back in Cornwall, I have had the occupational team come out and see me and have said I need more equipment at home to help me and that I also need a wheel chair. Today I had a lady ring me to see if I would qualify for a wheelchair and aparently following the information I gave them aparently yes I will be getting one from the NHS. I just have to have someone come out and measure me up and get the chair specific to me. I also had another lady ring me this morning who wants to come out tomorrow to do a stair assessment with me.

I have to say, although all this help and equipment is there to help me, actually coming to terms with the fact im getting a lot worse is a little hard to register in my head.

I also still have part of my lip that is still numb following my biopsy which im not really liking. I hope it comes back soon!!

My other halfs brother had a baby soon today also so theres more good news to celebrate for this time of the year. Yay!!

Well sorry thats such a huge post but itll keep you busy.

TTFN

XXXX

Tuesday 10 December 2013

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

XXXX

Tuesday 3 December 2013

What To Do!?

Life sure does like to throw you challenges doesnt it!? Well, I seem to think so anyway!!

Last year my best friend asked if I wanted to go to florida with her, great yeah I thought, why not!? And then I thought hmm I need insurance and what a joke that was. As it was far to much I figured I may aswell just start saving money every month for something else as florida really wasnt going to be affordable.

February this yeah my amazing girlfriend had pruposed to me, so the saving naturally went towards that. We have worked out that roughly it will cost £3000 roughly. Bummer, thats going to be a few years down the road then.

So the next scenario was lets start saving for a baby. Being in a same sex relationship, unfairly its going to cost a few thousand pound just to be able to create a famile. Totally unfair right. Yes I thought so also.

Then I thought, can we both be on our childs birth certificate!? So the research began and the outcome is: if we went through a fertility clinic then we dont have to be married and we can both be on the certificate. But if we went for a cheaper option of finding a donor and doing it in the comfort of our own home then no we cant both be on the birth certificate unless we are legally together. So yet another blow.

Now we are deciding, do we go through a clinic and put the wedding off and start our family OR do we get married and then do the cheaper option of starting a family!?

Im really stuck. Sometimes I think that we are both too young to be having children with me being nearly 23 and the other half having just turned 20, but then you look in society and see that half the younger population have started having children.

Our other sticky situation is that we cant afford to live in our own home so we are currently living with the rent in laws. Yes they have a spare room which a few months ago they happily said they would let us have for a baby, BUT pops uses that room on the odd occasion to sleep in when he cant get comfy in his marital room. So I feel bad that ill be taking his only other place away from him.

All these thought are actually stressing me out a little. I also feel alightly pressured as tine is ticking and I kind of want my last nan to be with us when I get married and also start a family.

Time will tell I guess!!

TTFN

XXXX