Still ... Blurgh

Soooooo Things are still crap here. The council have stated they wont help us any sooner untill we are actually homeless because there are a total of 28000 people that need homing and aparently we arnt a priority. Something isnt right here. Not only are we not being helped whilst we have being mentally abused but my health needs dont help us for anything. Not only this but because of my vunerability, according to the charty shelter, were meant to be priority but we arnt we just dont get it. On top of this, i woke up this morning dripping wet but freezing and and giess what my temperature was 38.1 and my peak flow is 280 post neb. Gp says ive got another infection so higher dose steroids and more antibiotics And lastly todah for shit news...the lump that started in my mouth under my tongue over the weekend is now about the size of a golf ball and the dental hospital who i was under last december for the lump on my lip for some reason wont give me an appointment Im so worried as ive had 2 tumors in my body now and it looks like this is a 3rd. Im worried that this lump could be the big c...know idea where i go from here if they wont get me an appointment in the dental hospital. On a good note though, i have the CT scan for my hips last night and will get the results on the 22nd I leave u with the yummy picture of my lump.yum.

TTFN XXXX

Devestated

Some people may say, atleast you know whats causing your trouble and others may say, its not that bad, ive had it but for me, its really got me down.

The reason it has got me down is because its the 3 bit of crappy news ive had this year so far and were literally only half way through.

I had Taunton hospital ring me yestersay saying theyve had my MRI results back fot my right hip. It turns out i havnt been making up my pain just to get morphine as some doctors have said, but infact i have a lebral tear in my right hip meaning i need to have surgery as soon as they can get the whole team together for me.

Im having the surgery down in Truro though as it can be done key hole down here rather than open surgery that Taunton can only do. So i have to wait for my care to be transfered over first.

The reason this bit of news has devestated me, isnt just the fact that doctors wasnt believing me but its also the fact that i flat line and stop breathing everytime i have a general.

Yes im aware that i dont have to have a general, but ive not been given these option as of yet. I guess each hospital has their own policies.

Only time will tell.

TTFN

XXXX

Anything Else Want To Come My Way?!

Sorry for not posting yesterday but I was so overwhelmed with information I just couldnt bring myself to sharing it.

I was at Musgrove park hospital in Taunton for a MRI on my hip.

I had to be there for 0920 in the morning as first up i had to have a massive needle poked into my hip joint again to have dye pumped straight into it. This was done under xray guidance. Initially all was going ok, then suddenly I felt very sick, went mega dizzy and from what i can gather, the colour drained from me and i went spaced out. Next thing i know both the nurse at my head and the consultant injecting me was asking if i was ok.

The whole team on this first stage was fantastic.

Following this i then went round to the MRI scanner. I got told that i would only be about 10 minutes...2 and a half hours later im finally back with my other half who had been going frantic and worrying mega because i had been so long.

off we toddled to the cafe though where i had a coffee to wake me up again for the journey back home. Fingers crossed itll only be a few weeks and ill have the result and find out what treatment i need.

Once home i had to ring my GP to update them on the new drugs ive started and i also wanted to check both my sputum and blood tests that i had done on Monday.

I was so pissed. The receptionst told me that yes the result were in but i had to physically come in to see the doc to discuss the result...and the next nearest appointment was 3 weeks away. I obviously refused this and said ill sort something, but in the meantime could the doctor ring me so i can tell them about my new medications...cheeky me then mentioned the blood results to the doctor when they rang me back and bloody hell im friggin glad i did. It was with regards to my phosphate again...and it remain critically low. Ulyour levels are meant to be 2.4 and above...mine was 0.6 so its no wonder im struggling so much so ive now been started on phosphate supplements and need regualr blood tests

As youve probable guessed following all this had 100% exhausted me so i went off to sleep...only to be woken up at midnight having a massive allergic reaction...gradually throughout the day i had been getting itchier and itchier and then by midnight i also had a full body rash. I could put my finger on what was causing it annd initially i thought it might have been the uniphylin...with taking this mornings dose and having no reaction it then clicked, it started straight after i had the dye put in my hip...and had been getting worse throughout the evening making me feel shit, so i guess thats another drug i can no longer have. Perfect.

I woke up this morning in agony though. I know the consultant warned me that with certain people, depending on what hip injury they have they can have bad pains through out the whole leg for the next few days..mand boy was he right. I could barly walk to day and i cant bend my knee without crying out in pain. I just hope it doesnt hang around.

Today i have officially made 35 baby hats so my first NICU box is complete. Im going to do another fair few amounts of hats though before i send them off as i want to get a great picture to send into asthma uk to show them the progress...please look through my previous blogs to find my just giving page...we really need more donation!!

TTFN

XXXX

Yet Another Appointment

Musgrove Park was my hospital today and this was for my hip. Last year I was diagnosed with AVN and an impingement in my right hip so they decided to stick a massive needle into my hip joint and put steroids into it. This was more to try and control my pain rather than treat it. Sadly though since this my pain has just got worse and worse and im taking lots more morphine. Todays was my review appointment following my procedure and and the doctor asked how I was getting on and what its been like for me. I explained that for roughly four hours post the procedure my hip was perfect. Absolutly no pain...the next comment from the doctor was "and dont tell me, when the local wore off you were in agony". To which I obviously smiled and said, yeah, how did you know. She explained that there are a few things going on in my hip and potential some more theyve not yet seen. So they are sending me off for yet another MRI scan but with dye this time. Only of the things she said it could be is a liberal (not sure if this is the right spelling or not) tear. The reason I may have this is because I have deterioration of my femerol bone, there is now a point bit at the top which has potentially sliced through my liberal bit (which is the lining between my ball and socket joint, AKA cartilage bit. She did exain to me though that there could also be other things going on. All of which will show in the scan. To treat the tear, I got told that this is equally as major a surgery as what a hip replacement would be. She also informed me that if it turns out there are other things going on, the only way to fix them would be a total hip replacement. U.fortunatly though this would mean yet another general, and as she said, as ive stopped breathing on the last two, im going to have to be treated wisely and a lot more carefully...guess theres no harm in that though hey c; Now we are back home and in bed. Had a lot to tjink about again and my head is going mental. Wach appointment seems to be screwing my head up that little bit more. I dont think I can actual take much more. Y cant my life be simple. I want to be like most average everyday people!! TTFN XXXX

Really!?

Could you ever imagine what a day in my life could be like!? Well here is yet another day of being turned upside down. Latly now because of getting up so early, my body clock now seems to think 0730 is the perfect time for me to be awake. Fun. I guess with being up so early the day may aswell have been started, so after my.morning medications we toddled off to the feild. Annoyingly though we had to bring my mother in laws dog with us. We only managed to walk around the feild twice though as I was bloody shattered. After all of that walking we then had to do a mad dash to the post ofgice as the post man is starting to get rediculous again with not posting our parcels. It seems as though I am now instantly the person that has to run everyone around. With having to take my father in law to hospital we had to leave his car at the doctors surgery, and because my mother in law was having a stress that it may have got damaged, she rang the rac and through mobility she got it driven home. Thats fine, I dont mind helping with that to some extent because you cant help being poorly, but what hacks me off is, my mother in law can infact actually drive and is insured to drive their car, she just doesnt want to. I stead I am being made to run around. All in all to dat, I have driven from home, to Bodmin, to Wadebridge, to home, to Truro, to St Austell and then back home again. I had to miss my lunch time medication because of being in the middle of driving which cause my lungs to get pissed off and it also meant I couldnt have any pain relief because of the drowsiness it cause which it turn has left me crippled in pain. Thankfully because of my amazing girlfriend, as soonas we got home she dosed me high with drugs and cooked me a lovely tea. After about 2 hours I was now in less pain than before. Enough that I could walk a little and decided to quickly dash around the feild again with Dixie as its really unfair for her to miss out hust coz my body is screwed up. Im praying that I dont have to run everyone around tomorrow as I really cant cope with it. On other notes, my father in law had a CT scan with dye to find out what was causing his breathlessness and it turns put he has clots in both lungs. He sadly though is adiment that its his diabetes that has caused this, no matter how many times we tell him different. He says that just hecause he is 19stone and immobile (to some degree) that that wouldnt have caused the clots. I guess this is a little sadening as it means he wont change his lifestyle. Some might say that this could be a warning to him. I guess if hes not willing to accept that his lifestyle isnt the factor for his stint in hospital then hes not going to get that reality check for his life. Sad really. TTFN XXXX

Reflection...

Today I have been up to Bridgwater with my other half to see my old respiratory consultant to make sure that my transition to my new local has gone smoothly and that things are semi remaining ok. I updated her with regards to my last admission and that it was again in ITU needing NIV. I also updated her with regards to my allergies, my myopathy, my manitol test and all else that I may have been told in the last 6 months. As usual, she was very pleasant, caring and helpful. She said that now having done the mannitol challenge test, it obviously helps with the confirmation of asthma, with the fact I dropped so low on my FEV1 so quickly by so much confirms that I am very sensitive and also brittle. We all knew this anyhow but o viously with it now being on baby, its hard evidence against those twats that just dont want to believe. My lung function today was pretty reasonable for my (managing to get 1.81 liters of air out my old sacs with the first few seconds) I say for me because in fact, my highest out put of litres of air in the first few seconds is only, 2.05 and my lowest being 1.12. I should aparently be around 4 - 5 litres but I guess we cant have everything hey. She did say that it could be this high because I am on increased steroids but obviously we would never be able to know this. I also got to meet up with my sister breifly, have a sneaky peak of the bump and I also got to see the 'baba' scan...and get a copy for myself...

Ok, so the meaning of this post 'reflection' is basically because with today being another lung appointment, another lung function and another lung discussion, it just shows me how precious my life is and how much I need to live it. Being re told again today that I do have uncontrolled severe brittle asthma really does hit home. It shows that can never be longer than an hour away from hospital as that could mean that day being my last. My consultant also mentioned how much happier I seem now with not living with mum and with being with my partner, and that everything she is doing for me really is helping me meaning im having less strain on my lungs. Although this again has really really scared me, I really do need to live each day as if its my last. This has also triggered my ptsd massively tonight because im scared ill never get to meet my sisters baby, let alone mine and my other halfs baby. On positive notes with regards to 'reflection' having seen my niece or nephew in the scan (im saying nephew) it just reminds me just how much I want to be a mummy, and yes I am disabled, spend lots of time in hospital and live nearly every day in my wheel chair, it doesnt mean our baby isnt going to be loved and less, and not only is our child going to have respect for same sex coues, but they will also have respect for a disabled person. I have a feeling this child will be a perfect citizen in society and I cant wait. Ok, so heres a bit if a battle of the thought tonight. Hope its not to jumbled, but sadly this is how my head is seeing it. Im off to bed now as im what the dictionary calls= exhausted c: TTFN XXXX

Maybe Some Progress!?

Thankfully, or shall I weirdly, our little puppy Dixie allowed us to sleep in untill 0900. Which was just what I needed after having the crapiest night sleep ever. Bouncing between coughing, flash backs and pain, my night was at the terrible end of the spectrum. I also woke up producing mass amounts of gunk, so it went straight in a sputumn pot and my inlaws were very kind to drop it in for me as they were heading past my doctors surgery. Fingers crossed that this may be the reasoning behind my lungs not being happy again. This moring was very chilled out, I put all three rabbits in the run for the day again, and made some home made Gnocchi, for mine and my other halfs tea, and it was blinking lush. Were using a lot of recipes from a book weve just purchased called 'A Girl Called Jack'. In this book the lady has made and adapted many different recipes to which are budget meals when living on £10 a week for food and they are also super healthy. I would definatly recommend it to anyone wanting cheap and healthy meals. Once my cooking session was over, I had to go to the doctors myself for 1440. I knew it was going to be a wasted appointment on my GPs side because it was following my conversation with an ass of a doctor last week, who wouldnt re prescribe my tablets because I was on so many. So in I walk to the GP (this one in oarticular us very good and I now wont see anyone else at the surgery). When I explained the situation on the phone and that im still getting the cramps, he said he would be more than happy to re prescribe me the drug again, and at a higher dose to see if it helps more. We also discussed the situation with my phosphate and that my local still gasnt responded to him as to whether or not there is a link to my asthma etc, do weve agreed that I will chase them up this week, and if they have a problem, I have to get them to ring this specific doctor and he will sort them out. We also discussed the fact my new antihistamines arnt working as effectively as I would like them because of the increase of reactions im having. We established that I am on triple the 'legal' dose, and if possible, leave it another few weeks to let my body ptoperly adjust and get use to the new drug, if not, then ill be changing over to one of the two alternatives to which I was given. In the mean time, my epi pens are not leaving my side. Just remembering, the twat of the doctor from the phone last week stated in my notes that I said GPs are a waste of time. I retold the nice doctor today that what I actually said was, I didnt want to be wasting GPs time coming all the way to the surgery when it can be dealt with over the phone. Shame it cant be removed from the system. Bonus though, todays visit was positive for me as I can restart my drugs, but a pain for the dictors as someone who is generally poorly and needs them, then couldnt have that much needed appointment. Im back off to Bridgwater tomorrow to see my old respiratory consultant and to also see my sister who is hopfully giving me a baby scan photo of her iggle piggle. So excited to see the real scan as the first was sent via picture message as we live ove 100 miles from each other. For now though, its film time with the HERsband and pup. TTFN XXXX

Life Recent Events

Thankfully life is doing fantastically at my other halfs in Cornwall and her family are fantastic, they are so supportive and just want to help me with everything. Im not used to all this care and help.

Ive had an appointment at my old local hospital and shes pleased with how things are going, and she said she will contact Plymouth hospital to see if they will take on my care as she knows the consultant there and aparently he manages difficult asthma also. Though this doesnt mean that Im going to stop going to Birmingham as they have been amazing.

Talking of Birmingham, I have also been to see them. Physio saw me first and done a few tests on me and confirmed that I dont have dyafunctional breathing nor do I have hyperventilation syndrome so I am absolutly over the moon with that. She also taught me a few more gunk moving chest physio moves which is super helpful. She also said that if this doesnt work by the time she rings me in a few weeks, she will see about getting me a device to help increase my lung function and shift a bit more gunk!!

Dr M is please that I have managed to stay on 10mg of pred, though when I asked if I could reduce it more or come off it altogether he said no, so thats a bit of a downer. He also says that im not allowed to reduce any of my other maintenance meds either. I guess the only good way of looking at this positivly is that I dont need any more meds currently. He wants to see me again in 3 months time to keep a close eye on me.

So life has been full of hospital appointments and driving up and down the country.

Im still waiting for an "urgent" mri scan at the request of my hip consultant to see how advanced my avascular necrosis is...who knows how long thatll be!!

Im travelling back to Cornwall tomorrow as I have an appointment at my new GP surgery to fill them in about me.

I am so shatterdd though, I tried driving today after going to Birmingham today and my legs just didnt want to work, theu were shaking all over the place, I really do hate the way things have ended up!!

Well thats my bit of excitement for the last week!!

TTFN

XXXX

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