Saturday 8 February 2014

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

2 comments:

  1. what about subcut/Xiolair/Methotraxate why cant you try them?

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  2. Brum dont want to risk changing me over to anything because of the dangersit will expose me to!!

    ReplyDelete