Busy And Excited All In One

Today has been one of those up and down emotional days

It started off with anger. My partner woke up super early knowing she had an order for a cake. 2 hours after she had been awake and the cake was cooked, the lady who ordered the cake sent a message saying she no longer had the money to pay for it and wondered if she could pay on friday but still have the cake tomorrow. Straight away i said no, it doesnt work like that. Weve taken the decision to not give her the cake. She said she would let us know of she could get the money from someone at 7pm tonight. I have no idea hpw she expected my girlfriend to turn over a peppa pig model cake at 7pm tonight. Crazy springs to mind.

After all that curfuffle, my respiratory consultants secretary got back to me after i left a message yesterday and has made an appointment for me in August to give him my over night sats recornings. I really praying something can be done about them as i woke up again with a huge headache and it puts me in a foul mood.

I then tried to have a snooze this afternoon as i was physically and mentally exhausted and my partners parents decided they would be as loud as possible. Bearing in mind we live in the countryside where theres no traffic or noise, they decided that instead of talking to each other in the garden, they would shout at each other. Pissed me right off as i got no sleep. So not only am i not sleeping on the night time but im being stopped during the day. I wouldnt mind but they knew i was asleep as my partners mum decided she would come in our room and start talking to my partner whilst i was led there with my eyes closed. Actually thinking about it...pissed off doesnt describe in detail enough how i was feeling.

Then ofcourse we had excitment...the pram and car seat we ordered on the weekend arrived. Its so amazing and very well padded for the child. best of all. It didnt have pictures on the side of the boxes so there was no chance any one could see what they were so our worries about the hell we were going to get werent needed yay.

I then on the other hand dropped the bomb shell to my partner for how much money since saturday i spent on baby stuff...and ot came to £159 whoops. Not buying anymore for now then hehe.

TTFN

XXXX

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

Wish Things Would Change!!

A year and a half ago, or there abouts, I had decided enough was enough with my asthma and treatment that I got refered to a specialist in Birmingham who for everyone else had done wonders for. I built my hopes up and kept thinking of how perfect my life is going to be once he sorts my lungs out. Yes granted he diagnosed me with brittle asthma, proved I didnt have VCD and also found I had severe reflux to the point if needing surgeryc to which he then arranged. This is all fantastic. For last Wednesdays appointment, we had been having email discussions for potentially future treatment, so I couldnt wait... I had four appointments booked for that whole day, the first being with the psycologist. She was absolutly lovely, diagnosed me with having PTSD and said that I need to be seen weekly for having specific treatment, so geres bomb shell number one: because I live in Cornwall she didnt think it was appropriate that I drove to Birmingham weekly to have this treatment so shes writing to my local team to see if they will help, and I have to pray like mad that I get on as well with the next team. Following this I was meant to have a reversability test, this never happened as the technician was flapping about the time and that she was running late. Er yeah, not my fauly lovey!! After this I was then to see my consultant, admittedly I was excited at the prospect of having new treatment and the possibility my life could change...I couldnt have been more wrong, and here's where my second bomb shell of the week hit. I have been told that my lungs are to damaged and that I am too poorly and uncontrolled for them to do any more for me. Because of what I just mentioned, I am not allowed onto any clinical trial because it would put my life at risk and potentially kill me so I have to stay on all my current medication and pray that in the very near future, a wonder drug gets invented and becomes perfect for me. Untill then, my consultant has said that I will now slowly deteriorate both lungs and muscles wise. Im devestated!! My last appointment was physio, and y this point I just wanted to leave, I couldnt be bothered now, I want my bed, I wanted to cry, and most of all I wanted to be left alone. Following all this, we also had planned that two days later myself and my partner were going to a clinic. In Cardiff to start a family...and heres where the final bombshell hit us. They would not help us gain this dream because im on long term steroids and they would also worry about the pressure on my lungs carrying a child, and they wont let my partner carry a child because her BMI is slightly to high. It sucks, if we werent a same sex couple we could naturally have our own child, no matter what tablets I was in nor what any of our weight was like. I find it unfair that anyone can deny you of a child for these reasons. We have come back home now and we are back with our very scatty Dixie, but my head is still very much depressed and my flash backs have rocketted. I hope things sort out soon. Its just bollocks that for the 10th year in a row, my birthday has yet again been ruined!! TTFN XXXX