Busy, Excited, Tired...All In One

These last few days have been very hecric but amazing at the same time.

We did manage to go away which i am so pleased about.

First off we paid a visit to my sister as my other half baked her the most amazing birthday cake ever so we went and had tea with her, gave her all her presents and webt and seen the finished nursery. So excited as theres literally on 2 or 3 weeks left and the baby should be here.

Following my sister we went off to Dorset, Sunday night was just a chill night with a few dvds, relaxing ready for our big day.

Our donor text us saying he was early but it was ok as we were ready and excited. He is so funny as he fitted us in between a trip to the tip and shopping at morrisons before picking up his son from school. Im so glad that he found us as we couldnt have found a better man to "father" our child.

Post doing the deed, we decided to take a random trip to Glastonbury to go charity shop shopping where we baught 8 baby items for £4. I absolutly love charity shops. We then went and had a proper realy banana milkshake with ice cream. Yum...well my girlfriend had a banoffee one but it was still uber lush.
To top off our amazing day, we then went and had a meal at the pub next to our hotel. I really do love spending these little days out with my lady.

On Tuesday I decided to take my other half to Clarks Village as shes never been there before either. We had a lush bit of retail therapy and i really treated her. She deserves it after all hehe.

Over the last few days ive been waking up with really bad migraines again. Thankfully though because i have been doing the over night oxygen readings its been showing that its clearly low oxygen levels that is causing it as they dropped down to 82% most nights.

In other good news, 4 weeks later ive finally cleared my chest infection so i am super pleased. I hate the fact it takes so long to shift but i guess thats just my crappy body.

Well, we find out if we have had any luck with our donor around the 25th July so if you could all keep your fingers and toes crossed for us I would be super pleased as i really cant wait to have a child with the most beautiful girl in the world.

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

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

Past & Present

0530 we were up today, and in a way, blinking good job as I was having a full blown allergic reaction. When will my body give me a rest!? Once all the morning duties were done we had to set off for Bridgwater. I have finally emptied my storage unit after having all my possessions locked away for over two years. Admittedly it was really hard, especially as I had my other half with me and she was finally seeing photos of me and my ex. As soon as I found anything from her, I tor it up, smashed it and put it in the bin. I want nothing more to do with her. She has (or shall I say had) ruined a fair chunk of my life and I wasnt going to allow her to continue that. And honestly, it felt good doing it. It felt as though a chapter has finally been closed and I can officially move on with the most amazing lady in my life. After finally getting home at 1400 we quickly rammed some food down our necks, fussed with the pup and put the rabbits in the run and cracked on with sorting through more of my kit. I finally had to call it quits at 1700 though. My lungs have had enough and I could no longer breath. Thankfully my other half realised how much I was struggling and how much I was coughing with a very high pitched wheeze that she rushed to get my nebs and I sat with them for a little while. Sadly though I am still very twitchy. Im praying that itll shift as next Saturday im meant to be doing the photography for our friends sons naming ceremony and I really dont want to let any if them down. Well for now, Im shattered, bruised and irritated so im going to nod off TTFN XXXX

Amazing Few Days!!

As you can tell, all has been a little hush hush with me for the last few days and heres why: On Tuesday, I drove myself and my other half to Dorset, we were booked into a travelodge for a few days. We know that there was a pub next door, but we didnt know there was a KFC to the otherside. But, we were good and restrained ourselves. Untill we drove to Glastonbury for a great little outing which was lush because my lovely lady had never been there, anyway, we had a krushem, which to be fair was blinking good of us to not eat also. In Glastonbury, we of course went charity shop shopping and have got some fantastic baby clothes for our potential future baby. Yes I know what you may be thinking, why buy it when your not expecting. But these are the best clothes ever and they are all made for that specific culture. They are bright, colourful and very much unique, aswell as super blinking cheap. Wednesday was also a big but fantastic day for us. We had planned to meet the man that could potentially made our dream come true for being parents. We met him at 1130am and had been chatting for a whole hour despite having been chatting to him for over a month. He was perfect. Polite, happy, intelligent man that has a heart of gold. He also signed a contract for us stating that he would have nothing to do wiith any child/ren that may be concieved from this. Excitedly, he also gave us a donation on Wednesday so in a few weeks we will see if all went as planned, though we keep reminding ourselves that it may not happen just so we dont build up our hopes up. On Thursday we sadly had to come home, and early because we had arranged to look after a good friends little boy whilst she went to an appointment. It has been fantastic to have a great few days away. We literally just chilled, were ourselves again, watched lots of amazing retro films and we had a really nice meal, just the two of us with no stresses. I cant wait for our camping trip in a few weeks time just to be able to be ourselves again, though when camping, we will have the little puppy then where as this time we didnt have her. Though, this will be exciting none the less. Today has a bit of a scatty day. Initially, we got up and went swimming. Because we had a few bad foods whilst we were away, we decided to do 80 lengths to burn off those things we ate. After swimming I then had to go buy a new glass for my wing mirror as the final half decided to fall out yesterday following some twat hitting it last december. Then, I had to run my lovely lady to meet with her new healthy trainer lady to get a little more help with our weightloss plan. Whilst she was with the lady, I took Dixie to the park for a little run around. Its been a great but very VERY exhausting few days, but annoyingly, we cant rest up tomorrow, we have to go to Bridgwater and empty my storage unit and we have to be there by 9am so its a wake up at 0530-0600 depending on which time I can be bothered to wake up to. TTFN XXXX

The Return

Finally 10 days later and I have come home from hospital.

Before I left, I had my tummy holes re steri stripped back up as there are still massive holes compared to wat they should be.

I also got told that they think the operation may not have worked. The reason theu think this is because I still cant keep food and drinking down properly. I am a little dissapointed with this but I guess what can I do!?

Before I left I also told the asthma team that I really not coping mentally, with the reason tragedy of Dawn who was such a fantastic friend to me along with all my itu admissions, poor hospital treatment and all the new diagosis its just all getting on top of me and I just want to end everything. So if figured maybe its about time I got things sorted.

Today I had my gp ring me with the results of my xray that I had before my operation and suprise suprise I have yet another bomb shell. I have a deteriorated femoral head which basically in simple terms, I have avascular necrosis. Which has added to my depression and hit me hard

I havnt told mum how Im feeling as we dont seem to be as close anymore. She seems so much more interested in her new boyfriend than me so I guess its another thing im going to have to keep on my shoulders!!

Well thats enough sadness for one hour.

TTFN

XXXX