In Recent Weeks!!

Just over two weeks ago I decided I wanted to feel poorly again lung wise and went to the GP to get advice of what to do to try and prevent an increase of steroids and a trip to hospital. After two minuted of sitting my bum in the chair in the Doctors office, I had sats monitor on and she was listening to my chest, within another 2 minutes, I had a nebuliser mask attached to my face and and ambulance had been called. A trip to resus and a five day admission and I was sent home again!! Sadly though I happened to run into an ass of a Doctor whilst there who didnt want to follow my plan from Birmingham and wanted to take matters into his own hands and left me with just hourly nebs. By 3am when the next doctor was coming around to see me, another blood gas was done which showed I was retaining my Co2, fun hey, so the IVs were started!! I also had a run in with the nurse as I wouldnt "wee wee in the potty" lets just say I wasnt happy about being spoken to like a 1 year old and the nurse soon sound out!!

Friday night I was sent home and on Saturday I thought Id be an ass and take the docs for a walk, so by Sunday night I had taken a turn for the worse again and was on my way back to the hospital.

The initial A&E doc was great, followed my plan according to how I presented and got IVs started and had admitted me. 3 hours later the MED REG came along and said I have been discharged two days ago so I dont need to be there again, stopped all my IVs and sent me home. Lets just say my mum was fuming, and took me to the next hospital  by which point I needed even more steroids and IVs. I also had a review by the ITU docs. They also admitted me as I was to poorly to be at home (surprisingly as the last doc said there was nothing wrong with me). During the 8 days thatI was there, I needed 5 days of IV aminophylline and a 4 day trip to ITU, I was least impressed and to be honest totally scared about going to my local hospital for if they send me home again, as if I didnt go to the next nearest hospital, what the heck would have happened to me!?

As you can probably tell, I put in a complaint with PALS about the MED REG at the previous hospital, and so far they have spoken to the initial Doctor who has agreed that I was very poorly and needed to be admitted, and following this the A&E consultant is also be questioned. Once all this has taken place, the MED REG will be pulled in!! No wonder asthmatics are scared to go to hospital when you get treated like this!!

In other notes, back a few years ago, I tried to end everything as im getting annoyed with having no life, no money and slowly loosing all my friends!! Over the last few days, these thoughts have been creeping back upon me and my head keeps telling me to end it again. Im finding it hard to work out whether this is genuinely    me again and just really hacked off with life, and whether it is being back on hi dose pred!! Ive told mum I want to end it but she keeps telling me to be strong and we will get through this, but the problem is, no one else knows what it is like to live my life, no one knows what its like to have to be me for just 24 hours. Yes there are people like me and people see me daily but no one knows what its like to actually be me!!

Im sorry if this maybe a shock to some people out there as I have only very told a couple of people about my past, but I cant keep it in any more, its eating me up and clouding my brain so im hoping that letting it out may be off some help!!

Well, thats me for now!!

TTFN

XXXX

Result!!

Finally I find a GP who has a brain!!

I went back again to the GP this am as is still have a stupid amount of pain from the pred withdrawals.

After two seconds of me sitting there, he has already pulled up my most recent letter from heartlands (to which the last two GPs didnt), disagreed with Tuesdays GP and said there isnt a chance in hell of it being the lack of tramadol in my system.

Because the last GP disputed it, he asked about my symptoms again, and poked and prodded my joints and said, doesnt look like anything else that he can see.

He did say though that he is reluctant to go onto drugs like morphine because my lung function is currently only 51%, but he has said that I can have paracetamol, tramadol and codeine, and if i alternate, I can have a pain releif every two hours. To me that seems like a god plan, and fingers crossed so far it hasnt been as bad now this morning.

Next up was a trip to the the physio department. To which they have said I have really bad muscle weakness and ligament damage. Great! so he has sent me away with some exercises, and will see me again in a few weeks!!

So for now...a happier me!!

TTFN

XXXX

Pain In The...Body!!

Since being discharge from Birmingham  because I didn't go home on anything stronger than paracetamol, I am suffering massively from the pain with the steroid withdrawals. I went to my GP to try and get something stronger yesterday but instead they gave me (according to them) the only alternative possible, which in my opinion is a weaker drug.

As thought, it did even less for battling my pain, so I rang and made yet another appointment for today.

Thinking I may actually get a doctor that generally cared, I book the appointment at lunch time and off I went. To be questioned about who told me it was prednisolone withdrawals (erm the consultant in Birmingham), as it sounds more like problems with to much pain relief...and he sent me packing with NOTHING!!

Now I have just about had enough of being treated like crap as if I had something else wrong with me that causes major pain, I'm sure Id get drugs straight away. With being so hacked off I rang Birmingham to see if they can help. They couldn't give me drugs (which I knew anyway as they are 3 hours away from me) but they gave me the best plan for taking the pain relief I have got, and asked whether the GP are going to look into my joint pain if they are disagreeing with what the consultant and specialists have said, to which I chuckled and said no, he just sent me packing, so they told me to believe them (don't worry Brum, I will!!) they also told me to keep going back as they will soon get fed up with me being there daily and start prescribing me something just to shut me up!!

I know physically Brum haven't help take the pain away, but in a weird psychological way, it is helping knowing that they have given me a plan and reassure me they do care and no Ill get it bad with such the steep drop in steroids I done, and also reassured me that hopefully the symptoms should have gone by the time the 6 weeks has gone by and I'm back up with them.

With moaning AGAIN, on a different subject, I have reapplied for Uni, I know there isnt a chance ill get in because of my health but I thought what the heck!!

well TTFN

XXXX

The End Of My Recent Journey

On Thursday I was all ready and waiting to have my metacholine challenge test done. When I eventually got down to the respiratory centre, everything was set up and I started by doing a basic spirometery. After one blown the resp tech then said he was stopping the test straight away as my lung functiin was only 51% compares to july which is a steady drop. A little gutted as wont be getting any other suggestions or answrs but also slightly happy as I know that the test isnt very nice.

During the late afternoon I got a little excited as I heard the HCAs talking about moving me into a side room...result, no more old people and their weird noises at night. UNTILL...they said there was no point as I was potentially going hom the next day as test couldnt be complete. Gutted.com!!

Friday came and they went over the tests I had done and reminded me of the new doses for my medication and best of all they said I could go home.

Mum arrived about 1530 and straight away I just wanted to leave so we started by just putting my kit in the car. Once that was dobe mum treated me to a yummy costa coffee and cake. Yum!¡

An hour later my body thought it would be great to have another allergic reaction, so I went to the dic who fast bleeped medical illistrations as they want tk start a portfolio to the weird and wonderful reactions I keep having. Once they arrived and done their bit I then had the lush drugs to counteract the reaction.

By 1900 my meds finally arrive, are checked and we are leavin *happysmiles*...and mum treates me to a scrummy maccers!! Much better than the to many to count fish finger meals I had consumed lol.

P!nk is pounding out the speakers and we hit the road. Once the album was complete, zonk, Im asleep...and next thing I know, we are home!!

My step dad bless him said I looked much better as I had sone colour in my face etc and then we tell him  about my latest reaction. For some reason my stepdad always seems to think the minuted ive left hossie im instantly better...weirdo!!

I have to admit having my own bed again was lush. But I hated not being able to sleep sat up right, the duvet was to hot and the strangest of things, I hated it when I woke in the night and I couldnt instantly see as there was no light. Strange how things change in a matter of weeks!!

With being on a much lower dose of steroids than I have been in 22 months I am suffering massivly with the pred withdrawls and I hate it. When its at its peak in the middle of the night im crying in pain and just want to wither give in and take more steroids or just go to hossie and get stronger drugs. I never no what to do!!

My rant for the day, and now to catch up on two weeks of tv

TTFN

XXXX

A Few Answers...

Firstly ive had a few rough days and nights whilst coming off the steroids which hasnt been very nice at all. We have currently come to a hault at 10mg of pred as my body couldnt cope!!

On other notes, my asthma team decided to get immunology involved because I keep having these random reactions and they have now told me I have idiopathic anaphylaxis. Great hey, so basically severe reactions that have no known trigger, so I could walk outside and something in the air cause me to have a reaction. Damn body!!

I also had my nasal endoscopy with provication yesterday to which showed I dont havt VCD which is fantastic news as it is my asthma!! Sadly though it showed that my reflux has caused damage to my upper airway which is why I have become so sensitive to sprays and strong smelling stuff etc.

At this moment in time though im not sure of a plan for resolving this.

I have one more test tomorrow so will be back with results then hopfully!!

TTFN

XXXX