Thursday, 15 October 2015
Not Much To Say
Tuesday, 17 February 2015
Hospital, Asthma And Mental Illness
Saturday 31st January 2015...at 7am i woke with a very rude awakening, yet another asthma attack. Its never nice waking up struggling to breathe, having a peak flow of 90 and sats of 81% so we got an ambulance straight away.
By the time i got to resus i was shattered. All the usual drugs were given and ICU had been contacted. They came to visit me in resus and all i remember is waking with the ICU consultant holding ny head and holding a bag and valve mask to my face as he was bagging me.
So, as you can probably guess i went to resus and was on NIV for 24 hours.
Once my gases had stabilised i begged to leave ICU because of the trauma it causes me so thankfully they got me to the ward pretty quickly. U fortunatly,the first night on the ward there was a crash call put out for me.and the resus trolly placed next to my bed. The ICU cons then rushed me for an urgent CT scan to make sure i had no clots as my gases were shocking. Thankfully i didnt but i did however have double pneumonia and some shadows on my lungs. The pneumonia had been treated and ive gotta go back when more stable to have biopses on my lungs to figure out what the shadows are.
Three days later i was getting better and my consultant wanted to see how my heart was doing as he though he could hear issues. So off i pop for the scan and guess what, i have fluid building up on my heart. Perfect. So now i need a second heart scan this sunday to see how fast it is building up.
Thursday morning I started to feel a little better and even managed to put on a film. 10 minutes in and now i have no recollection of what went on. I only know what ive been told because i went unresponsive. They think that this is a result of my asthma attack and my body being extremely exhausted. Nothing could wake me. They put stupid amounts of pressure on my chest, collar bones and eye sockets abd it didnt wake me. Aparently they also put in an oral airway and i even tolerated that. I am now sacred shitless that thisll happen with every attack i have.
My consultant has now also started me on hypertonic saline nebs to try and shift the rediculous amounts of mucus i have building up. At the moment all is going good though it is making me mouth stupidly sore.
Following all this, it has really fucked up my head and i really dont want to live anymore. So i finally managed to build up the courage to tell the staff at hospital how i felt about my suicidal intentions abd as a result ive been admitted to a secure mental health unit.
All this happened on my birthday and it sucks. What a great birthday.
I got put on level three line of sight because of the risks and my intentions to die.
The second night of my being here i really did just have enough so tide stuff around my neck. Sadly though about 5 minutes later i got caught. Needless to say im mega pissed off.
Ive also managed to get hold of things and cut up my arm aswell. All of this because of stupid PTSD abd flashbacks from ITU admissions. I really want this to end. If not the flash backs then my life...
TTFN
XXXX
Wednesday, 10 December 2014
Beating Statistics
Well first i would like to talk about my title in that myself and my Mrs has beating statistics at Derriford Hospital Immunology clinic. Aparently a person is meant to take 6 weeks to be trained how to do self injection of Sub Cut IgG treatmemt, myself and the lady on the other hand have learnt it in 3 weeks and as of next week we wills be at home doing it ourselves. I am soooo overly happy with this is as it means theres no worries about missing doses over christmas because of needing to be in Bristol to make sure that Dixie is having to be put up for adoption.
Im still amazed at how quickly we have picked it up, i mean i know its not hard drawing up a blood product, attaching it to a pump, stabbing my belly and pressing go but to some people it obviously takes a little longer.
In other news, last night and i guess still aparet of me today is feeling a little down in the baby department. I really want to expand on our family. Weve been trying now for nearly a year to have a baby and we seem to be getting know where. Im also feeling crap in that i want to be able to be a real mum. Not just one on the birth certificate of my wifes child. I want a child that was created by me. One that i habe carried myself. One that has grown within me. Its just not going to happen,not in the direct near future anyway because of my health and drugs.
Why cant life be fair. Equal. Easy!?
TTFN
XXXX
Thursday, 23 October 2014
Good Girl Gone Bad, Pissed, Annoyed, Fragile
Wow where has the last few dyas gone again. As you may have seen, the title is full of sarcasm and realism.
Lets start with my lungs and health all rolled into one. First off my lungs, ive had a really bad infections this week. On Friday i got put on more antibiotics and steroids put up to 40mg. Over the weekend i got worse and by monday i couldnt talk. I pushed my luck and went to the gp as really didnt want to go to hospital. My oxygen levels were 92% and i was really struggling. The doctor wanted me to go to hospital but we came to the compromise that we would increase my steroids even more and hope for the best. He said if by Thursday i was no better i had to go see them again. Thankfully, this morning all was better and my oxygen levels were back up to 95% and i was no longer nebbing every 2 hours.
The next bit of health was with regards to my bones. I had my second dexa scan after i had one 3 years ago and got told i had osteopeania. Thankfully as a whole the results say that ive not gone into the osteoparosis stage BUT my femur has shown some deterioration and my spine has shown it is crumbling pretty bad. Great.
Ive also had another pain team consultation and because ive not been able to decreased my codiene and when i have ive needed more morphine theyve doubled the dose of my morphine patch. At first i felt ok but now as the evening is going on im feeling very spaced out and a little weird.
A change from my health, to a friends health. Remember i mentioned a few weeks back about a very good friend who was super poorly, well things started getting better and even got to the stage she managed a few hours off oxygen and walked a little. Sadly though the next day she was extremely poorly again and has since been on the ventilator again for the past 2 days. I really feel bad, wish i could do something to help her. Hope she starts getting better super soon.
My poor other half bless her has had a bad few days. Shes been so worried about ne that its messed up her mental health a little and has sort of gone tunnel vision. Shes dropping lots of things, not really understanding basic tasks and unfortunatly yesterday somehow managed to leave the freezer door open slightly and 3/4 of the food defrosted and either had to be chucked or cooked. Ive tried telling her that its ok. No1 got hurt. No harm has been done and not to worry but she still feels really bad bless her. What annoys me the most is that her parents havnt given her basic life skills for living solo. She doesnt know the basic things about life and with me being poorly at the moment i really dont have the energy to actually guide her. Im trying but its making me very exhausted.
To cheer her up though we went charity shop shopping today to get her some new clothes and for her to have a change of enviornment.
On the wedding front, bloody hell its coming around far too quickly. On Tuesday we went and got another gift for a very special boy who will b walking us down the aisle and carrying our rings. We made him a build a bear and purchased a wedding tux to dress it in hehe.
Well my new morphine patch is really knocking me out so im off
TTFN
XXXX
Friday, 3 October 2014
All Getting Too Much
This weekend is that last weekend we have in this home and to be honest I bloody glad.
I really feel sorry for my girlfriend, shes never lived in a home without her parents and theyve not given a flying fuck. Theyve not cared at all these last few weeks for how she feels. Bearing in mind she suffers severly with anxiety and depression.
As of today, her parents have left the house. Though they will be back as theyve left lots of shit behind. So we are here on our own untill Sunday.
Weve only had one friend who has helped us A LOT and we cant thank them enough. Whats really pissed me off is that initialy my girlfriends parents said that they will fire a van and move our stuff and their stuff. Then suddenly today they rocked up with a van and we werent allowed to put any stuff on it so im blinking glad that over the last week we have slowly been taking stuff over to our new flat.
Tonight they came back quickly to get something and then left whilst shouting bye from the bottom of the stairs. It wasnt a nice goodbye with any effection for my girlfriend at all and from past experiences at my end, when you leave tje family home its extremly upsetting and yet her parents actually i re phrase that, NONE of her family have even bothered to ask her how she is. I think its disgusting and its completly uncalled for.
Till this day aswell they are still treating us like we are five stating that we cant fill some holes in the wall from where we took our stuff down...bearing in mine 10 mo ths ago we decorate this room and had to fill in holes then...and if they think we are still children, you would think they would ask their own daughter how shes coping but no!
On a lighter note, yesterday we had our homeless officer contact us to give us an update. My doctors, ive no idea which one out of them all have finally decided to send in a medical report and the housing team have stated that we are a urgenty priority to be placed into a long term home and we have been bumped up to a B band so fingers crossed not long and we shall have our own home officially.
On a safer not though, weve only 2 more nights and one long day left with Dixie. I was sorting her stuff out earlier ready to go to the foster home abd my hesrt was breaking. I hate the fact that my girlfriends parents are being so nasty as to not have her meaning we have to put her in a home 3 hours away from us. Im gutted. I mean come on, you wouldnt purposly give up your child because of a housing situatio so why are we being forced to give up our puppy. I hate it. Just got to pray that we get our permenant home pretty bloody soon.
Because my girlfriend is clearly breaking down, ive done a little suprise for her. Ive made a card on moonpig to welcome her to her new home with me and ive also ordered some personalised cup coasters with 4 pictures on. One big one of us 2 and the 3 little ones of Dixie so hopefully thatll cheer her up.
For now though im off as im wasting precious time with Dixie
TTFN
XXXX
Tuesday, 16 September 2014
Quick Update
Ok in short, im still very much depressed, if not worse, im still packing and we still have no where to live in 2.5 weeks.
To top things off, out middly rabbit has now come down with a respiratory infection so hes now onnantibiotics twice a day. Something we really didnt need right now.
There has been progress though, tomorrow at 2pm we are having an interview with the homeless team. We blinking hope that they can actually do something for us. So far they seem great though. Today after the appointment was made they faxed my GP asking for a full report about my health which sounds positive though annoyingly theyve not received the update from immunology about my new treatment which we really could of done with. Though ive left the secretary a message and i just pray they can help us out also.
TTFN
XXXX
Wednesday, 3 September 2014
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
Tuesday, 26 August 2014
Really!?
Ever get so pissed off you dont know how to express it or even deal with it...well thats me today.
For the past year, everything ive done jusg isnt good enough for certain people. My girlfriends parents im mainly talking about.
We decorate our bedroom in january but i got told her dad had to do it as hes better.
We braught my old rabbitt hutch to this house, before we new it as we popped out her dad had built it saying he could do it better...even though i built it first time around.
I start to build our rabbit run, he finishes it saying he was better.
I plant so flowers in the garden in pots, ever day we go down and hes taken over with them again.
Today, i sort out my girlfriend bike so she can start new challenges again. All is safe, she rode it and was comfy and all was working well. Her dad comes up to the bedroom and tells us he will be sorting it tomorrow and cleaning it as hes built bikes since the age of 13...and that doesnt make u any better than me. I too have built bikes, and cars to that fact.
Its pissing me off. Everything i do here is never good enough for them. I mean i dont actualy care how immature they are being about everything. The thing i care about is that its making me feel like shit, constantly being put downand being made to think im never good enough. Its an insult and i hate it.
Im off to be depressed now...that is if i can do that right also!?
TTFN
XXXX
Tuesday, 19 August 2014
Wowzers
What a few days it has been.
As youve guess it, the stress we had a few weeks ago through my other halfs parents has started back up again.
As of yesterday the was now moaning that we took OUR coffee upstairs. Yup you got it, it wasnt even their yet theyve gotten arsey over it, so kicked off.
Today we pop out to get Dixies flea abd worm treatment, we litterally step one foot through the door and we are bombarded with the fact that they have found a bungalow on cornwall housing, they went and viewed it today and have applied for it, so we could be moving in 2 weeks time.
Yay great, they get a lovely home to live in,we on the other hand become homless.
What the fuck are we going to do.
Why are they doing this to us, all along theyve said we will move first and them after to ensure no one is without a home. Then they go and do this to us.
So i distract myself from all of this and start preparing our dinner. I can only do the non dangerous prep as i cant risk doing any more. Ive hurt myself far to many times...but wait, even doing our dinner was wrong. They wanted to use the appliances we were using...yet theyve been sat on their arse doing nothing and the minute we start cooking we are now in their way. But, this isnt all, we are then being dictated to for how this meal should be cooked. Bareing in mind,theyve never cooked it and me hve the recipe book in front of us to which we are following.
I literally cant wait to get the hell out of here.
On a good note though, me.and my.other half are off to bristol for the next 3 days as we are seeing shrek in theatre. We are also flying by my sisters to have squigy cuddles with our nephew. Cute!!
TTFN
XXXX
Saturday, 14 June 2014
Frown Isnt Upside Down!!
Ok so im still strunning to see light at the end of the tunnel.
Everytime i think something fantastic is happening, I get knocked back down!!
I had the doc ring me up on Thursday because it seems we are having the same battle as last time for keeping my aminophylline levels up so i am now on 600mg a day to see if that does the trick.
Today my other halfs sister arrived back in the UK after a week abroad on holiday...next thing we know weve got a text stating they have our invitation and she then starts getting nasty that weve not invited them to the ceremony. 10 minutes later i get a facebook message from her girlfriend saying shes not coming to the meal weve invited to because she cant see the justification in taking time off work to come down for a meal they have to pay for, so i reminded her that there doesnt need to be a justification, we just wanted our family to celebrate our day with us...i guess for some thats a hard concept to grasp!? I wonder if i could tell them that i dont see the justification in doing their wedding photography for their wedding next june!? I wont because im not nasty. I want to be there for their big day even though it means travelling 300miles and 4 hours to get there, then paying out for a hotel and then travelling back...never mind the fact that i am disabled and struggle to drive 20 minutes!!
Anyway, rant over for now.
In other news, im a little concerned about my muscles. To those that dont know, ive been diagnosed with proximal myopathy which basically is a muscle wasting illness from being on long term steroids for my asthma. Its now getting to the point that im struggling to hold my head up, my neck musclsa are really starting to struggle and im having to wrap my V pillow over my shoulders and under my head to support myself. This is the last thing i want. This is another kick in the teeth for being disabled. I know my consultants had warned me but they said years to come like 10 years...not 10 months down the line.
Im currently at mums now though. We needed to get out the house. The stress is getting to much and its making me even more depressed. It also helps mum and my sister out as she was meant to be dog sitting for our mum whilst shes at a friends wedding but with her being 31 weeks pregnant, having a hyper dog running round your feet isnt wise, so weve braught Dixie with us and were looking after the 2 dogs.
Well, im off to sleep now as yesterday anoth migraine set in and its hanging around again.
TTFN
XXXX
Tuesday, 6 May 2014
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
Monday, 7 April 2014
The Future Is Bright...The Future Is Painful
Sunday, 23 February 2014
Feeling Low!!
Monday, 17 February 2014
Becoming Aware
Sunday, 8 September 2013
My Recent Adventures
8 days ago I got admitted to heartlands in preperation for my operation which was on Tuesday.
I went down at 1230 and got told I would be 45 minutes. 3 hours later the finally take me off the ventilator. The reasons for this was because my lungs had a massive disagreement dropped their sats and started to struggle. So as you can tell I worried a lot of people.
I finally got back to the ward at 6pm or there after and wasnt really with it at all.
The pain was so bad I really didnt know what to do with myself. It doesnt help that I couldnt have local in my tummy because Im allergic to it.
The next day was still pretty much the same, still loads of pain, unable to breath properly or cough so they upped all my pain releif in the hope it would sort things.
Thursday was going good. Pain was starting to get sorted and I started to be able to cough again but sadly I had developed a chest infection so had to stay yet another night and be started on antibiotics.
Around 5pm on Thursday, everything I was drinking I was bring back up. Which wasnt good as aparently this operation is supposed to stop me from being able to vommit. So they done an urgent xray to find out what was going on...I had a bowel obsturction - twist in my bowel so I was put nil by mouth and given fluids. To top things off my pain releif was reduced as they needed to wake my bowel up as it had gone to sleep.
So not only have I got operation pain but also have my agonising hip pain back.
The weekend has been pretty uneventful other than me being depressed and thinking about everything and also being in far to much pain.
I am hoping to leave tomorrow but currently I am still vomiting everything I try to eat/drink which isnt right.
My consultant in Birmingham has also requested and MRI scan of my hip to find out what is going on as they think its highly likely to be linked to my steroids. Perfect!!
Well thats my ramble for now.
TTFN
XXXX