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

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Pharmacy

Im so angry i could literally cry.

I ordered my medications from pharmacy a week ago. They told me on wednesday they werent ready so had to dive into my emergency steroids.

I get my drugs today and they tell me yes everything is there we dont owe you anything this time. Perfect i thought because of going away on Sunday.

There i am doing my medications tonight to try and help my other half out and low and behold no steroids in my bag from todays order.

Fuck

Ive no steroids at all.

So i ring my local pharmacy and i get cut off. So i ring minors and switch board wouldnt put me through to them they just transfered me to out of hours gp. Who refused to help me.

So im screwed and literally crapping it.

Ive been on steroids long term for 4 and a half years now and my adrenal glands no longer work so if i dont take a does of steroids tomorrow its not just my lungs thatll be pissed off, my whole freaking body will shut down.

Im going into another pharmacy tomorrow to plead with them to help me. If not ive got to go to hospital and my weekend at the craft fair, visiting my sister for her birthday and going away to dorset with my girlfriend wont be happening and that also means £100 down the drain for cancelling the hotel at last minute.

I cant believe my pharmacy for doing this. Ive had a cock up with them on every order so far and i order drugs weekly because the gp wont increase the amount of tablets etc i can be given at a time. Ive also been with this pharmacy now for 10 months. You think they would have got their act together.

Well, ive now got a splitting head ache so im off to bed

TTFN

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Uncertainty

Its been a few chilled days here in our house hold as weve had a a bit of a rough time health wise for me and weve had a lot of paperwork to fill in.

With regards to health, since Alton towers ive had an infection *suprise suprise*. Sky high temperatures, chest flaring, sats and peak flow down. So i went to the doctors last week to catch it early, steroids went straight up and i got put on strong course of doxy for antibiotice. I done a sputum sample to catch which bug it was and although i got told i just know its a type of pneumonia again. Today i woke up gasping to breathe and sats were back to 93%. I dropped my steroids on Monday as it had been 7 days and i didnt want them high again but with an emergency visit to the gp again today they put them back up for a further 7 days and given me amoxicillin and another course of doxy so fingers crossed i start feeling better again soon. Ill do another sputum sample as sokn as my airways are open enough to cough a reasonable amount up.

With regards to paperwork, since my partner had the carers service team out for her last week, weve filled in a form to apply for another grant to be able to have holidays or hobbies whilst im in the state i am. So fingers crossed we can get this.

Weve also had the paper work through from the council for a welfare assessment. It was 4 pages long and i also sent in an addition a4 piece of paper of extra evidence as they didnt provide enough space...talking of rubbish space, they asked for a list of my nedication but only gave one line...an i had to provide another piece of a4 paper filled from top to bottom with my drugs...think they will have learnt their lesson there!!

Well, tomorrow we are going to try and venture out to Liskeard to meet onet of our very good friends and their son. I wanted to get some more fluffy wool for a personal project im knitting and we decided to meet up with them too. Ive warned them i have an infection especially as her sokn is only 11 months so to be nice i will be wearing a mask so that heres no risk of me passing on my pneumonia!!

Aside from all that paperwork, i have yet another form to fill out for a grant through the charity called the muscular dystrophy campaign. I had a re referal done with regards to my self propelling wheelchair but sadly i dont tick all the boxes to get any form of electricalness for my current chair so theyve put me through to the charity. I just need an assessment and letter wrote on headed paper saying i would be a suitable candidate to be given a grant to and i can fill in the rest of the form. Really praying i can do this by the end of july as their next meeting is augst 8th.

Well, fingers crossed i can get out tomorrow and i get my assessment.

TTFN

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

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Just Another Day

Up nice and early today because I had OT coming to measure me up for the stair lift im having fitted. Thankfully thatll stop me falling on the stairs like I done yet again tonight. After all the measuring I then dropped my lovely girlfriend off at Bernados for her 3 hours of volunteering. Whilst she was there, I filled my time with walking Dixie, sorting our flowers out and chucking the dead ones, eating some diinner, nebbing and sleeping. When I woke I felt like absolute shit and rather puffed. As a result I had a quick (ish) dash to the mirror, noticed my lips were blue, so went and got my sats monitor...90%. Bollocks. Quick nebbing session before I had to get my lovely lady again. Thankfully im feeling a little better this afternoon and evening so ill see how I go before I ram any more steroids down my neck. Weve also found another feild to which we are allowed to walk Dixie and blinking heck she blinking loved being back in a feild again chasing a ball. For a squidgy puppy she aint half blinking adorable. Other random things about my life today...my GP receptionist rang me because my GP wants to see me so the had to arrange and appointnent. Its planned for the 28th. When I asked if she knew what it was with regards to, she thinks he said it was because I need to start a new medication. Im baffled as to what for so it should be interesting. And final news for the day to put a smile on your face...today ive lost another 2lb and a quarter in weight so since 6th January this year I have now lots 1stone and a quater and a grand total since the start of my weight loss last August of 3stone and a quarter. I just have another 2 stone to go and im at my healthy weight. Really hope I can do it. Hope your all well. TTFN XXXX

Overdone It Again!!

I knew today was going to not only but busy but also hectic and stressful. Thanks to our darling pup, we were awake at 7am so just decided the day may aswell begin. After sorting out the rest of our pets and eating breakfast we headed off to the swimming pool. I told myself I was doing 100 lengths as punishment for eating rubbish food yesterday, and, I done it but it killed me. As a result tonight both my lungs and muscles have officially given up. When we left the swimming pool we had to drive round to the tip and unload a car full of crap that I just can no longer keep since moving in with my other half. It was sad to see many things go, but heres to the future right!? We finally manged to get home at lunch to which my other half set off for doing the final touches to the cake ready for the naming ceremony tomorrow. I on the other hand, read up on some photography and downloaded a new software onto my computer that my sisters in laws purchased me. Eventually this evening I did start helping with the cake though as time was pushing on and I didnt want my other half stressing. I wanted to leave the majority to her though, as shes amazing at these sorts of thinfs and its only fairvas im doing my part on the actual day by creating the memories through photography. As I mentioned, we started the cake at lunch time which was roughly around one ish, and we finished all of half and our ago which was roughly 2230. Ill try and get a picture of the cake to upload for you all to esee over the next few days. Suspiciously, (dont want to build my hopes up) but today and yesterday I have been feeling so hugry and wanting to eat everything insight. Im just craving food soooo much. Im not sure if this is a sign of a positive note, or just because ive had my steroids up again. Lets just say im hoping its not the second thought. Complete change of subject now, but, I never understand why I put my body through so much. Every day thus week weve been busy with something, and now after tiday ive completly screwef my body up again. Im hoping I havnt screwed it up to beyond movement tomorrow meaning ill end up letting my friends down. This and fir next week when me and my other half are having our official first un hotel holiday break with just us...oh and Dixie!! Ive always loved camping and other than camping in the back garden for a tester experience last year, my other half has never done it. I was determind that this year it was finally going to be ticked off my bucket list again as since my illnesses become so bad, ive not been able to go, but this year ive decided to say sod it, I could be dead by the end off the year, I need to start living for today...so thats what im doing. Right, I better go, got a blinking lit to do tomorrow and ive got physio and nebs to do now!! TTFN XXXX

Such A Nit Wit

As you can tell from the title, I still havnt learnt from my mistakes. Last night I had to put my steroids up because I was struggling so much, and today my lung function still isnt good, but that still didnt get me to sit on my arse and chill. I had to take my other half to volunteering at lunch time, but because we wetevearly, we decided to walk around the local park with the puppy. That initially killed me espevially as I decided to walk tjis time instead of using my wheelchair. Once I got back home, I had to sort all the pets foods out and get the rabbits in the run. I then had to have some dinner, do my meds and then try and sort my pc out, all before I had to then go pick the other half from work. Stupidly though, I promise my other half that we could go to a place called Cardinham woods and go for a walk with the pup and also have a 'naughty hot chocolate' because it is so hilly though I refused to have someone push me in my chair so ended up walking again. Safly though we only got about 5 minutes in and my legs were giving way and I couldnt breathe, so we had to turn around and go sit gown. I was gutted. Steroid myopathy and brittle asthma are so dibitating and is slowly killing my independance and freedom. My flash back are also flaring back up again. More than the usual daily stuff. I think its because my body is struggling again and its scaring me for what might happen. Im hoping they will settle down again soon!! My pain has also gone ridiculous. This is my fault though. Because of trying for a baby, I have stopped taking my morphine as I dont want it risking causing any harm to the foetus at all. Im considering asking my GP to refer me to rhe pain team to get things back under control. In happy news though, this week I lost another pound in weight. That means I have one pound and three quaters to loose and ive lost another stone in weight which totaled up, thats three stone since last August, im so chuffed with regards to that!! Well, sorry for the depressing post, I just had to talk to someone and you guys seem perfect. TTFN XXXX

Relaxing...I wish

One of these days I will learn to take it easy, I just have to!! I decided that I needed to finish off what I started yesterday with all my kit from storage and blinking heck it has killed me!! But in good news, ive finished it all so I am mega pleased, I just have to do a tip run tomoorow to get rid of all the paper, boxes and crap that we just dont have room to keep anymore. I have to admit it has been tough though. I didnt realise how hard it would be. One because of its a chapter of my life im never going to experience again, I had the most amazing flat ever and it was all mine, a place I could retreat to after id finished work on the ward and chill with my pets. Secondly, I didnt realise how much stuff I still had from my past relationship and it was hard looking back on it all, it braught back some nasty memories. But, its all done now and have my future to look forward to!! In other news, my other halfs sister and her girlfriend have got and purchased me a new photo editing suite in their words "to practice for their wedding photos". Im so chuffed, its a bloody good piece of software, though that still doesnt help sort the fact im still craping myself about doing their pictures for them. On the shit side of things, my lungs are going downhill. Ive nebbed a lot more and upped my steriods in the hope its going to sort me. My peak flow has dropped ans my sats are 92%. Im really hoping what ive done will help sort it as I really dont want to let my friends down for this saturday!! (Oh, and for camping next week) We will have to wait and see!! TTFN XXXX

Dentist Disapointment

I final managed to get to a NHS dentist after 4 months of being on the waiting list. Horray...or not so it seems. When they rang me to tell of the surgery that will have me, I rexplained that I am disabled and not very good on stairs, they said this was ok and sent me the details to make an appointment. The only perfect thing about this surgery is that it is very local. The rest goes down hill. To get into my surgery you have to go up two flights of stairs (er what happened to disabled friendly). My actual dentist funnily enough has ubber bad breath which is really off putting when your led there breathing through your nose sucking in his aroma and the last bad thing is. The dentist doesnt seem to have heard about asthma, strange one I thought. As suspected though, it was about time for my steroids and nebisers to start effecting my teeth, and in two weeks I now need to have treatment. Im really not looking forward to it as the last NHS dentist I saw in Bristol butchered my mouth and has put me iff ever since. On good notes though, my oral hygiene is good!! Ill let you know how it goes in two weeks!! TTFN XXXX

Eyes!!

Steroids are a bugger right!? Yes!! But without them my lungs would be erm...shitter than what they are now.

As a downside though you can get loads of nasty side effects, and my body sesms to like to get them all.

Recently,my eyes have been getting a lot lot worse, I already know that I have cateracts, but now im starting to panic that I have glaucoma.

The reason I think this is because Im getting a lot of headaches, even on waking up and my eyes havnt been used, Ive also got these weird little brown spots starting to appear in the iris part of my eyes. On top of this they are also getting a lot blurrier.

Ok I may be think of the extreme or it may just be my cateracts getting worse,but the thought of having glaucoma really scares the shit out of me.

Looks like im off to the opticians on my next pay day!!

TTFN

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My Thoughts For The Day!!

Ive been sat here all day as my lungs have been really rubbish abd my new GP seems to be the worlds biggest waste of space and basically told me if I get worse go to the hospital, dont think he realises I would like to be home this christmas...

So with being sat here, my mind has been giving me every worrying thought possible again (yes of course this has been increase by my yet another increase of steroids). My thoughts at the moment are going back to the lump I had in my mouth and my recent biopsy. I get my results on the 6th January so yes I dont havt long to wait, but its still long enough to have everything do through your head.

I keep thinking the worse. Do I have cancer!? What treatment will I need!? Was it just a random growth that wont need any treatment at all!? These are just the three main things im thinking of.

I just wish the 6th January could come around quicker. Would do me the world of good!!

TTFN

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