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

XXXX

Moving Forward

Yesterday ive finally got to a pain team appointment. Ive been having chronic on going pain, not just for my hip but because of the myopathy from the steroids. Unfortunatly at present no intervension is possible unless its with pain releif. Ive been maxing out on paracetamol, tramadol, codiene and oramorph with little to no effect so now ive been started on a tens machine which is hooked to my hip 24/7 and i turn it on for 1.5 hours every 4 times a day. Ive also been started on bupanorphine patch ontop of everything else. So far theres been no change other than the bupanorphine knocking me out and the tens machine causing pins and needles down my leg. My life seems like such an adventure lol.

Ubfortunatly, my friend who I mentioned a little while back, has remained in hospital and had started rehab and moved to a ward, sadly though today she has had to be taken back to intensive back and has been reventilated, really hope she continues to fight through this nasty infection that is still pumping through her body.

Weve had regular updates with regards to Dixie being at her foster mums. Initially we thought we have had to put her in the kennels as she wouldnt stop crying us which was resulting in noone sleeping. The foster mum had spoke to her husband and they decided that because she wasnt like a normal foster dog they looked after, they would let her upstairs in their sons room with him and suprise suprise, shes aparently the perfect house guest which is amazing to hear. So much so that the foster mum even felt she could let her off the lead over the feild today. Its lush to hear that shes doing so well. Just hope she remembers us when she comes home.

Thats all for now

TTFN

XXXX

New Adventure But Yet More Stress

What a friggin hell bound few days.

Spoke to our housing officer yesterday who has asked us to get a letter from our mother in law stating we will be homeless by October 6th. 8 hours after i had asked for this letter, it still didnt get wrote so as  you can tell i was pissed. My father in laws answer was well they arnt going there till wednesday so theres no rush. They finally done it at 10pm last night and asked if it was good enough so my partner said yes. Nothing more or less came from her mouth yet her mouth still insisted on saying "oh well dont sound to enthusiastic by it then". I mean come on, are you for real, this is an official bit of black and white paper saying that in less than 4 weeks me and my girlfriend have no home.

On top of all this, our housing officer has stated that they should have given us more notice, what theyve done by leaving it this late is complete unfair...but to be honest, both u and i knew that.

We may have to temporarily get rid of Dixie also which we are gutted about and thats basically because 95% of temporary accomidation doesnt allow animals.

On a semi good note, i had another hospital appointment today with regards to my lungs and immune system. Not sure if you remember, but 3 months ago i had bloods taken, then 6 weeks post that i had an injection and then another set of bloods to see if the injection work. As i had another 3 infections i knew in my heart it didnt work. Aparently my first set of bloods showed my immunoglobbins to be at 38 (these are the bits that fight off colds and infections). Once i had the injection my level should have atleast trippled to 114...mine went up by 4. Yes FOUR. My level was a grand total of 42. perfect. So for some unknown reason my immune system doesnt want to function and even the flu and pneumonia injections i get every year, my body seems to be resistant to which explains why ive still had flu and still had a stupid amount of infections within the last year alone. So now i guess your wondering whats happens about this. Well, u know these amazing people who give blood (my girlfriend and a very good pen friend L(u know who u r)) the blood they donte get divided into three parts, the red stuff to aneamic people, the clear stuff (plasma) to people with low platlet count and the straw coloured stuff to people like me. This is their immunoglobbins so essentially its their immune system. Myself and my other half have chosen to do the treatment at home for atleast once a week for the next year. We will be taught how to administer it through a needle in my tummy and two syringe drivers. I will be gettong 2 very large boxes of fluid donations (yuk) delivered to me to make me better.

But heres the sucky bit, because of our housing situation, we have to do the first 3 months at hospital. Purly because if we got put in a hostel, for one we cant have the drugs delivered there and two if andrug addict sees ive got needles we are open to being attacked. So yet another shit pain in therear we have to deal with.

Well for now. Life goes on and i have to be extremly greatful that not only go i have my wife to be being enthusiastic to help me administer my immunoglobbins but also i have to be extremely greatful for the amazing people that give blood. Without them my weird immune system would kill me!!

TTFN
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Annoyance

Ever had so much pain ur restless!? I have. Today has been one of those days. Ive maxed out on all my pain releif and im still in complete agony with my hips. Thank goodness ive got my CT scan on the 1st, my hip consultant on the 22nd and then pain team in October. Hopfully then all this pain will start to be sorted out. Though im not looking forward to the surgery if and when they say it.

In other news, my lungs have also been crap today. I knew something was wrong when i had a rubbish nights sleep, mucus plugs and a husky voice.

So i check my oxygen levels and peak flow. Oxygen has been about 91% all day and peak flow is 50% down. Im not rushing to the GP though as im seei g my respiratory consultant on Wednesday so if he feels i need to step up the treatment then ill do so.

I also went to vauxhal this morning because i really need to trade in my car as my current car, although bloody amazing its simply just to small for me now.
Unfortunatly though they only had one of the style cars i want and it was about 5000 over my budget and the car i saw on the net last week went on friday. Typical.
The man was nice though and took all my details and is going to ring me as soon as one comes in stock and ill be getting first dibs on it. Im just praying that the dealer doesnt want another deposit as unless i take out a 2nd credit card i cant afford a few hundred on a deposit now.

Well, other than all this annoying stuff today, generally it has been a good day.

My mum got me the game scrabble at the weekened as we have been searching everywhere for a cheap first addition game to no luck. Me and my lady will be playing tomorrow if i can cope out of bed and ill be kicking her ass.

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

XXXX

Busy Bee

Alarms should not have been inveted. I hate them. I had to wake up early this morning because I had to go to the GP to have blood taken. I initially thought this day was going to be hell because the steroid nasal spray I ordered last week hadnt been authorised by the doctor. Its meant to take 24 hours, im currently on day 7 so now and urgent message had to be re sent to the doctor. I then went to log in to say I had arrived for my bloods - and the computer crashed, so I cued up and had to register like the good old days...the lady at reception was being so slow that by the time it was my tern, it was then showing I was ten minutes late. Not impressed. I should have my blood tests by Friday though and we will be able to see whether im going to need more medication for my phosphate. When we got home, as I was down stairs, me and the other half decided to finish the run we had built so that our three boys could finally run around again. We are so impressed with our handy work, what do you think:

After this I had to drop my other half into benardos so she could do her good deed of the week and I went home to bed as I was exhausted already...so much so I fell asleep untill she came home again which was roughlu 4.5 hours. Whoops. Its ok though, I made up good time by knitting 3 more baby hats this morning. It is coming along quickly now. Ive completed 19 altogether now and I have another potentially 2 people donating more wool to me to complete my challenge. Tonight I made my smallest hat so far, here is a picture of it next to my ventolin inhaler for a comparison:

Please continue to support me by donating just a small amount and also sharing my just giving page: https://www.justgiving.com/Charlie-Hockaday-Williams Tonight me and the lady have also put a menu together for our wedding meal and sent it back to the hotel we want to go to for pricing so hopfully by the end of next week we gave get our invites sent out. Im day as you can see has been rather scatty, but it has exhausted me so much that I am just finishing my physio and im off to try and sleep. TTFN XXXX

Typical Day

For me the weekend doesnt really change from any other day of the week. Other than the shops being busy and you see more people walking about the village, its all just another day for me.

I decided last night that it was time for my hair to have a change again. I jeeded a fresh look. Make myself feel good.

So, me being me the minute i woke, i done my usual routine and then we headed off to asda to buy dye.

Although me hair is blonde, i decided i wanted it blonder so we go a bright bleacg blonde. I also wanted to add some colour too so we got a bright pink too. My partner got black. Talk about complete opposites lol.

Once all my hair was dyed blonde, my partner cut it for me, re done my shaven patch and upon my request i got her to put two zig zag lines across my shaven patch. When the pink was ready to b applied, we done my usual fringe bit and also the zig zags. With having pre lightened my hair it now looks friggin amazing. Nice an bright and colourful. Although my partner used the same pink, because she dyed her hair black initially, hers turned out a plum colour which for her looks stunning.

Just doing this though completly exhausted me so i had to go back to bed...three hours later im awake not realising how exhausted i must of been. I do get annoyed by this. For the average person, they would dye and cut their hair after a 6 hour day at work or something very similar and not be anywhere near as tired as me. I do wish some days that my life wasnt like this.

When i eventually woke up properly, i was extremly itchy, so i put on my glasses and i could see why. I was having yet another full blown reaction. I was as red as a beetroot and my lips were double to size. Eventually after 6 antihistames, things started to return to their usual self, and no epi pen was needed but i think if these antihistamines hadnt of kicked in, i would have been stabbing myself in the leg again!!

Ive also managed to knit another 2 hats today so i now have 5 in total ready to send to my first NICU unit. Only another 25 to go and thre gift box will be off to the post!!

Untill next time...

TTFN

XXXX

Really!?

For me today has been reasonably ok. Ive literally only been able to get out of bed twice though literally today. On the second occasion i collapsed also which was a gutting blow.

Myself and my partner had a great zebra baby grow arrive today for our future child. Its blinking lush. Yes you may say but your not pregnant, but for us, because we cant work, our theory is if we start buying things gradually over the months, our baby will have everything they need and deserve and can have the best start in life.

I also had my birthday present arrive. My DIY 35mm slr camera.

After just under 2 hours, I had completed the challenge of my big build and it absolutly shattered me...I ended up falling asleep for an hour and a half afterwards just to recover but im pleased with the end result. Now just to get 35mm film.

In other news though my lady has had terrible period pains. Ok i suffer from other sorts of pains but ive been lucky in the sense ive never had period pains. She was in tears and i had no idea what to do to help her other than drug her up on pain releif. She ended up curled up next to me with a hot water bottle and thankfully a few hours later everything had settled down again. God knows what shes going to be like during labour if this was painful for her though ha. Ive gotta try and get my arse out of bed tomorrow though as Dixie has the vets so untill tomorrow... TTFN XXXX

Finding Money And Finding My Smile

Forgetting I had a birthday a few weeks ago means I forgot I was given money. Ok granted I still cant put petrol in the car but I can buy something if I need...though have to "walk" there to get what I need. My inlaws were really kind this morning and took myself and my partner swimming today. We go every Friday and we really didnt want to stop just because we couldnt use my bank card.with trying to loose weight, we figured it was a mudt, if we give up now. We will give up altogether!! Along with this, they said that they had to go to the local town to pay their bills and said that they will pick up my drugs. I really couldnt thank them enough for their kindness today. We were both really pleased with our progress with swimming though. Again we were the only two people in the pool, and just had a nice casual swim. I hip is in agony now though which really isnt good, especially as we just decided to take the puppy around the feild- twice. Ive decided though that I need to keep moving. If I stay sat all the time because of the pain, itll just get worse ehich is going to get me nowhere. In exciting news today, I had post from the bank. Yay!! Wow I wish you could hear my sarcasm right now because, the bank sent out a bank card with my old name still on it. Would love to know why they did that considering I went there personally to change it. So again I had to ring the bank and adk them what they were playing at. According to this gentleman on the phone, he doesnt understand why my card has been blocked in the first place, it doesnt make sense. Not to me nor them it seems. Muppets. If it wasnt such a pain in the rear I would change my bank, but I really cant be bothered with all the hassel. Were supposed to be meeting up with really great friends tomorrow in Exeter because its one of their birthdays today. They have been a real big support to both myself and my partner and I couldnt thank them enough. The one lady use to be a learner support assisstant in my old secondary school, we had no contact again untill roughly 3-4 years later when we saw each other at gay pride in Bristol. Two which I then established she was also now dating a lady. They were also at the time going through the same process as myself and my partner with having a baby and they now have a very beautiful baby girl who is full of life and always smiling. I really cant wait to start the process with my partner. Ok itll present some challenges no doubt with both life and health, but when doesnt a baby present challenges. Im sure youll all be pleased to hear that we have continued with our healthy eating also and tonight our tea is going to be meatball pasta bake. Weve also made another healthy soup for the next week. All these exciting new food really are keeping us motivated. Ok do I think ill stop rambling now!! TTFN XXXX

Wondering, thinking, worrying!!

This week has been the most stressful in a long long time.

It started last week with the doctors and my gp surgery. They decided they didnt want to prescribe my medication to which they decided not to tell me so when i finally got hold of a gp (three days later) my drugs had ran out and i was getting arsy. All would be ok if it wasnt a special ish drug that needs to be ordered into the pharmacy.

After sorting all of the above, i then go off to the doctors to pick up the late prescription and low and behold, another driver decides they want to drive into me. Thankfully i wasnt hurt but i was even more pissed at this point. I get all of her insurance details, name and number and i ring my insurance to start claiming through her. My insurance company ring me back on monday to tell me that, oh the driver isnt insured. Frigging perfect, this could only happen to me hey!!

Also on monday, i had to go back to the dental hospital to have my lump in my mouth rechecked and a date decided for when they want to do a biopsy. There i am sat in the chair and the consultant is making those weird hmm noises when something isnt right. He then goes off to the computer, after a few seconds he cones back to me and asks if i was free three oclock that day. I say that i am and i go back. It seems like they want to get this biopsy done quicker than originally stated. The biopsy itself didbt really hurt at all, he put a numbing gel all over my lip and gum first before jabbing me with a needle to use a local aneasthetic. Half an hour later, three lumps later and four stitches later and my lump has been removed and sent off for testing. The consultabt was a little concered because he expected the 'lump' to be a sac of fluid that would leak out as he sliced it, sadly though it was a solid lump. Once he got the biggest bit out the way, he then found another two lumps starting to grow deaper in my lip and a little lower down. He thinks he got everything but of course he cant promise. I also ended up with four stitches instead of the original two because of how much it had grown since he saw me two weeks ago. All in all the i am glad that the lump has gone. With how my luck has it though, two of those stitches fell out 4 hours later but thankfully there was no bleeding and the two ends have stayed together so ive not bothered going back. I have to go back on the 6th january to get the biopsy results. I really am praying its ok as ive been through this process befor when i had a tumor in my knee when i was 17. Thankfully that was bengin!!

On good notes though, last friday one of my friends had asked if i would take some photos of her 4 month old baby, to which of course i said yes. I took 138 photos and ended up liking 34. (I swear im far to fussy). Amazinly though they have turned out friggin great. So much so i have amazed myself. I sent three sneak previews to my friend on sunday just to show her some results and she cried with joy with how great they are. Im going back over to hers on the 17th to give her the rest just before christmas. Im excited to actually see her face with the results. She has also asked me to take photos next march when its her baby boys naming ceremony. Im really scared about this as i dont no how my lungs or muscles are going to be and ive never done 'professional' photos in this situation so im mega scared.

Well for now, this has been my life. Im off to another hospital apointment tomorrow for my hip and then off to mums for some tea and to exchange christmas presents. Following this im then driving to bristol to see my dad and two friends. We are going to be there untill sunday so its going to be one busy week. Joy!!

TTFN

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When It Comes To An End

Since my last admission from Bristol hospital I have had my lovely lady staying with me and helping me out. We have been through so much it has been a little hectic. We have stayed for a little while at my mums whilst I recovered initially, then we had to dash back to Cornwall as the other half had an appointment. As you know I had to come back to my mums as she fell poorly, but of course I braught the other half back with me again. all of these times we were chilling and movie watching waiting for my body to pick back up again. which seems to be taking a while. During the last 1 or 2 weeks we have been to a charity fun day where I did my first stint of being a photographer. I have to say it was a little scary but I loved it and cant wait to get stuck in doing more challenges like it. A day later we then drove to bristol where we stayed at my dads for a little while. On the Monday we went to Bristol Zoo as the other half has never been there and I havent been there in so many years that it all changed. Her face was amazing throughout it all, she had seen so many new animals that she hasnt seen before that it make me feel great knowing that she has done something new. Tuesday came round and we had to drive to Birmingham as I had an appointment. This appointment sucked a little though as I got told that my body has become allergic to itself which is why I am having so many allergic reaction. End result being, I have to take another drug, and the other half got taught how to use and Epi pen just incase I couldnt manage to do it myslef. Wednesday arrived and we went and met up with some of my firends and their new little baby. My beautiful lady loved meeting them and has said they are definatly coming to the wedding *Result* c: A day of Gromit hunting on the Thursday. Something both myself and the other half has never done before, we were both knackered by the end of the day but managed to fine 30 out of the 80 Gromits, have a picnic at Cabot tower and generally have a lush time exploring Bristol together. Ever been to Brighton...well we drove their with two of our other friends and we landed in the worst hotel imaginable, we had to park 10 mins away in a shopping centre car park which we didnt have any money back on. We were on the fourth floor and the beds where like sleeping on newspaper. ok this was crap, but I was with my lady and that was AMAZING!! Brighton pride took place on the Saturday which was the reason why we went to Brighton in the first place. We had a great day, the weater was nice to us and we got to see Lucy Spraggon performing live...absolutly epic she was!! Sadly though I had an allergic reation so had to go to the medical tent to get checked over. Only two antihistamines were needed though thankfully. Sunday...the dread day of them all. I ended up driving 14 hours from Brighton to Cornwall, to Bristol and then back to Bridgwater. It massively killed me to the point I was vomitting non stop from a massive migrane. Ended up having to go to my local hospital to get IM anti sickness just so I could keep all my asthma treatment medicine down. So all in all a massively hectic week. I am now back home on my own...untill tomorrow when my lovely lady is catching the train back to me as we are going to pay a visting to Bristol International Balloon Fiesta as she has never been before. lets hope the weather stays nice for us...else we will be going in the rain!! Well makes a change having a nice blog for once hey!! TTFN XXXX

About Time It Got Better Dont You Think!?

For me it is more gutting news. Ok so I slightly already new it in the back of my mind or maybe thought it could be that but now it is official. The doctors have diagnosed me and are treating me...I have Steroid Myopathy and I hate the fact it is now reality. For those of you who dont know, Steroid Myopathy is a muscle wasting disease caused by steroids. I have to try everything in my power to keep what little muscle strength I have else i will be wheel chair bound. I am considering a wheel chair now but still debating it as my legs technically still work and im sure if I were to use a wheel chair perminatly what muscle I currently have will be gone for good, and thats the last thing I want. I also have to start a new drug which is similar to steroids but it has no side effects like the steroids. Sadly though this doesnt mean that I never need to take steroids again, every asthma flare up I have, I have to have a big dose again yo get me through. Perfect.

Also as mentiobed before I have been having problems with my hip, well today I had an injection in it in the hope itll sort it out. I have to give it 2 weeks to see if it has made a difference. If not I am being refered to orthopeadics.

Is life ever going to get better, or am I going to have to suffer more and more with these shitty side effects.

I guess on a positive note, I can officially marry my amazing girlfriend who has been my rock these last few weeks. Love you so much!!

TTFN

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