Disappearing Summer Months....

I didn't realise just how long it has been since my last blog post. Over the last couple months I have had a car accident, (I wasn't hurt thankfully) turned 32, celebrated 3 years with my lungs, gone through heartbreak with losing friends one after the other, had a scare with our nephew Jack & had some beautiful ink placed on my body. I think it's time I gave you a brief update!

Stefan & I @ Newquay Zoo 

 

 

 

 

 

 

So back in July, I celebrated my 32nd birthday, Stefan surprised me with a visit to Newquay Zoo & then we came back for a movie & cuddles with the rest of my furry family, it was a lovely day. The girls surprised me with a new addition to the zoo, who I have named Zest & I have been able to get a few more awesome piercing's with vouchers I received as Birthday gifts. The following day I spent with Lauren, my sister visiting Kent's Cavern & Living Coasts with a lunch at Prezzo. It was really nice being able to get out & do a few things. 

Zest My Albino Horn Frog

Lauren & I

Straight after my birthday, I noticed that my Emperor Scorpion had given birth to adorable white tiny babies! This was a really nice surprise as I didn't even know she was gravid! They are all coloured up now, eating well & ready to go to new homes, my cresties are also producing really beautiful hatchlings, really pleased with how my zoo is getting on. 

Temperance & Her Babies

As you know, I would have celebrated my third lung anniversary on the 26th July. This year it fell on a Sunday & Stefan & I had the chance to be able to do something really special. I say had, but it didn't turn out that way. The weather was torrential. I had wanted to go to this tiny little zoo place up in Axminster, but the rain poured, the winds were high & there would have been no way that you would have gotten to see anything especially as throughout the day it just got darker & the rain more heavy. I was very disappointed, but what upset me more was the fact that people who I thought would have known how special the day was to me just didn't get in contact.

I am not a materialistic person in any shape or form, I like to do things, get out & about & create memories, so I didn't expect a hoard of cards at my door... I had a few lovely messages over Facebook from CF & tranplantee friends, but nothing from the ones I loved & thought would be around. This really got to me & as it was looking like no one was getting in touch I became a complete emotional bitch, my headache grew & I started throwing up. I got myself in such a state that I ended up just passing out on the floor, Stefan left me to it, he knew I just had to let it pass, I woke up with Bo cuddling me & spending the rest of the day on the sofa. Not the way I wanted things but there was nothing that could have been done about it now.

I took a long hard think over the next couple of days, I needed to stop worrying about the people that I expect things from, it clearly hasn't & won't ever change. Instead, the people that messaged me, that sent me love that day, they are the ones that matter. It's really hard to face up to a reality like that, I always give people chance after chance because I like to give them the benefit of the doubt, I am still learning but it has much improved. Next year, if I get to celebrate four years, I won't let the lack of other peoples actions get in the way of my celebrations. I am here, I think it is important & I know for a fact Stefan is thankful so regardless we will do what we can to show my donor how grateful I am.

Towards the end of the month I was very kindly asked by Neil, a fellow cf/transplantee to join him on a Meerkat experience local to us which he received as a Christmas present. Loving all nature I obviously jumped at the chance. The lady who let us into the enclosure was brilliant, we had a really good opportunity to watch & feed them, it was a really nice afternoon & only made me more determined that I wanted to do more things like this...

At Shaldon Zoo

I have started to compile a list of things I want to do before I shuffle of this mortal coil. I guess in a sense it is a bucket list but I want to call it something more exciting than that! Kim's Conquests, hmmmm maybe that sounds a bit dodgy, but anyway, the list is what is important. I have been really lucky to already have one thing pretty much set up other than actually doing it...

When I was at Harefield in July I met up with Mark (a fellow lung tranplantee) & his lovely wife Steph. We were just talking about life in general &  I told them about this list & one thing I have always wanted to do was to drive a car - fast! Turns out that Mark actually got an experience like this from his mum but as he already has a car just like it, it's something he just doesn't see himself doing especially with how busy he is. They very kindly offered it to me, I was absolutely over the moon, a few days later it turned up in the post, the expiry was this August & I just knew there wouldn't be an opportunity for me to get it booked in the limited time I had so I took it upon myself to contact Virgin, explain the situation & ask for a small extension.

Helen replied to me, she was fantastic, explained that the particular experience was on offer at the time but that I could pick another instead & they would give me the full 9 months validity. I chose a Super Car Blast for two, so Stefan & I could do it together. She then replied saying I still had another experience to choose from because of the money spent so I then chose a two day pass at Weymouth Sea Life Centre. They both have 9 months for me to be able to complete & I am thrilled, so bloody excited. Stefan has recently started a new job back into roofing so we are going to wait until he has settled in & then get the experiences booked. I want to take lots of photos so I can show Mark & Steph & Helen at Virgin, I feel extremely lucky to have been given this gift - so a massive thank you to all three of you for making this happen. 

Me & My Stinkers

Since then I have also had help from a very special friend who I won't name on here but they know who they are.... Since visiting Bristol Zoo back in June, I have really wanted to do the fruit bat meet & greet (very much like the Meerkat one Neil invited me to) I will have to sign a disclaimer to make sure I am happy going into the enclosure with them (common sense with regards to being clean!) but he has made it happen, all I need to do again is wait until Stefan can take a Tuesday or Thursday off & we can travel there & have a awesome morning! I am really excited about this! Thank you so so much for fulfilling this wish for me!

Other things I would love to do is visit all the London Zoo's, Madam Tussades, have some crocodilian / venomous training & maybe meet a few stars, Shane Lynch & Steve Backshall would be immense! But I try to keep my wish list realistic!

So, talking about my wish list , I should really update you with my health. I have been back & forth to every bloody hospital imaginable over the last few months, I am being seen in Torbay by a shrink (who for once, is really nice) she is really helping with my depression  but it's just one step at a time. I have been seeing my physio Rosie a lot to do exercises & massage with my legs (calves) as I have completely knotted & clotted muscle's which is unbelievably painful. She has managed to start relieving it & I am hoping we can get away without a referral to a muscular skeletal physio. 

Celebrating Mother In Law's Birthday!

At the end of this month I am going back to Harefield for a few days with an appointment in the middle at St Mary's hospital. (I detest with a passion) Unfortunately, although I have always had trouble with reflux & the sticking of food after my fundo operation almost two years ago, the situation is just getting worse. Barely a day goes by where I don't throw up something I have eaten because it gets stuck, I am in so much pain & the only way is for it to come back up & I have obviously lost my appetite thereafter. It's extremely embarrassing when I am out in public with friends & have to run to the toilet, it's a complete waste of money as I just can't eat & extremely upsetting so I just don't do it anymore. I am not sure what they will do but I imagine this is just the very first in a long line of appointments to get it investigated. My lung function is still sitting low & stable at 30% I have been very worn out lately but as long as I try rest up a few days a week I seem to be getting by.

We had a very nasty shock last week after Jack, our very poorly nephew was rushed into hospital with trouble breathing. He was diagnosed with MLD (Metachromoatic Leukodystrophy) in February & he has been deteriorating at a rapid rate. He is heartbreakingly terminal & this is just the start of what is going to be a really hard & devastating time for all involved. Thankfully, after lots of TLC from the amazing staff at Louisa Cary, (many, of whom looked after me since I was a bean) Jack went home over the weekend with his breathing returning to normal. This is no way a happy ending, we don't even have time on our side as he is in a lot of pain every single day & his organs are shutting down. Our little lamb is only four years old but he always has the most amazing smile on his face. A true inspiration to me. 

My Two Favourite Boys, Jack & Uncle Stefan

I think that's pretty much it for now, my head is banging, I need a tuppy & I imagine I am boring you to death as I drone on...

Before I go I just want to leave you with some pictures of the recent tattoo's I have had done over the last three weeks. Another item on my 'wish list' was to have some amazing ink (especially of my family) I think I can safely say that this has been fulfilled. Dris has a talent beyond words & I can't describe to you just how amazing these are in the flesh ! I have had the sitting booked since March & I can tell you it was well worth the wait, I am having my transplant date in Latin added next month but I am well & truly ecstatic when it comes to the look of this one pigeon leg of mine!!

Thank you to Dris for your hard work!! 

Crumble & Kaos

Bo & Cookie

Thank you for taking the time to read as always xxxxx

Shocks & Realisation, Another Year Under My Belt!

So, after my really positive blog a few weeks ago, which I very kindly got lots of lovely feedback from, my life was turned upside down with the news a very close friend with CF & only 18 months post her transplant had passed away.

Emily was beautiful, inside & out & we became very good friends from the start, she just 'got me'. We'd piss & moan about the things that were really vexing us but had a great laugh doing so. She became very poorly at the beginning of this year & was diagnosed with chronic rejection. Our conversations became shorter because of the time she needed to rest, I obviously understood but missed her so & was beginning to really worry that that things wouldn't get better. A few weeks ago my phone went off & it was Emily, telling me that she was feeling stronger, just tired & that she would soon be home. I was so excited for her, like me, she was a complete animal nut job & I knew she missed her furry babies desperately. That day didn't come, after contacting me herself, a family member posted on Facebook that she herself had decided to stop taking her medicines & wanted to no longer suffer. With less than two days, she slipped away. I was utterly gobsmacked & have taken it again really hard, I just hate sitting here watching one by one my friends & acquaintances being taken by this shitty illness. Transplant is not a cure, Emily only had 18 months with her new lungs, but would it have been the 18 months she wouldn't have had? I just hope that now she is at peace & can no longer hurt from all the physical & emotional pain that life had brought upon her the last six months. I love you Emily, sleep tight. xxx

Emily & I

Having the shock of Emily passing so very quickly, it has given me the huge jab up my arse you need every now & then to stop wallowing in self pity & live the life you have got with all you have got. I have started to put a bucket list together on things that I really want to do / achieve before my time is up (& no guys, I won't be putting up a Go Fund Me page! Some of you will know what this means!) No matter how small or big it maybe, it'll be my job to make sure I do all I can to do it, some in Emily's memory too. I have a few things already on there, but if you can think of anything YOU think I'd like to do OR you think I would benefit from, then don't hesitate to comment & let me know :-) These things shouldn't be expensive, I can't travel the world or go on holiday, I wouldn't want to do this, I can't afford this & my animals come before anything.... Once I have a concrete list I will put it up for all to see & follow my journey ticking them off one by one!!

Since Emily passed I have done a lot of things with my friends to stop myself over thinking things & getting myself into my pit. 

Here Come The Girls :-)

We celebrated Alicia's birthday & went to Bristol Zoo which I thought was amazing, I have completely fallen head over heels for fruit bats & would love one, just a shame I don't have the space for flying requirements else I would have made dam sure he'd be the next family member! 
I am pretty certain I am going to be in huge trouble for uploading these pictures, but I think they are lush & I wanted to show you my special friends that keep my spirit so high when I am going through a difficult time. 

The Besties

We also celebrated Stefan's 26th birthday too, we went out for a lovely lunch & Kate & I had special birthday cakes made by Totnes' Cake In The Middle, that tasted & looked absolutely amazing :-) We also watched Jurassic World which I highly recommend.... I want a velociraptor too :-)

Alicia's Cake (Of The Gorgeous Late Reggie)

Stefan's Cake Of You Know Who

Route 5, Haldon

Birthday Lunch For Stef @ The Hub Box

I went to my first reptile show in Doncaster & came back with some beautiful geckos & a Thai bamboo female to go with my male. The geckos I have named Bonny & Clyde & Lucius girlfriend, who's so tiny, is called Faith.

Bonny

Clyde

Faith

Last night, my friend Hayley who I met on Louisa Cary ward back when I was about 9/10 took me to see Boyzone at Newton Abbott Racecourse as a birthday treat. Boyzone were my number one obsession when I was younger, I collected everything I could get my hands on & worshiped the ground Shane Lynch touched! (I still do now!) We got really close to the stage which was fantastic & after a very long wait, we got to see them preform. It was bloody amazing & Shane still has it!! ;) Huge thank you to Hayley for spoiling me. I loved every second. 

At The Stage!

Shane!

Beautiful Aft / Evening Thank You Spud xx

Now this week I'm counting down the days I remain 31, on Thursday, Stefan & I will be celebrating four years married, we are going back to Memories on Friday evening to enjoy a meal together. Then come Monday, I will have turned 32. Stefan has the day off but I don't think we have anything planned as such. It will be a very emotional day, Emily, shared the same birthday, so she & her family will be in my thoughts all day, I can't imagine how they will be feeling, not even a month on from her passing. Not only that, I will feel extremely lucky to have reached 32, a huge milestone for an CF these days & another year with the beautiful lungs that were donated to save my life, still the greatest gift I could ever receive.....

My Family

Thank you all for reading as always, much appreciated, love & hugs xxx 

32, On 6th July 2015, Thank You To My Hero For Making This Possible

Feel Proud & Accept Your Achievements!!

It's not been long since I last wrote to you, but instead of 'updating' you I wanted to take a different approach & write about all my achievements recently.

As I look down my Facebook feed, there is nothing but moaning, bitterness, anger, jealousy, greed.... I could go on, only once in a while I see something that makes me smile & restores my faith in humanity. I doubt me writing this blog post will make anyone's life better, but it may give you time to think about what you have achieved, whether it be big or small, if anything makes you happy, it's got to be worth it...

On July 26th this year I will be celebrating three years with these wonderful lungs. Someone saved me, gave me these extra three years which we all know I wouldn't have had if he hadn't signed the donor register. Through someone's tragic loss, I was able to breathe again, be a wife to my husband, a sister, a daughter & a friend. That alone is an achievement in itself, but I have had my fair share of up's & downs throughout this journey. 

27th July, After My Lung Transplant

Four Days After My Transplant

People ask me daily how I am doing, my answer is usually always the same. I'm good. I'm ok, I cannot complain, which I can't....

Things have happened which has lowered my lung function a lot more than I thought it would but the difference is thinking about it in a whole new way. I have been to hell, on all the machines needed to just get through the day, having my husband dress me & take me to the toilet, just existing... My lung function now is low, but I am able to walk, I am able to climb stairs, (albeit, slowly) I am not on oxygen & I still have my independence. That, is my achievement.

My family has grown, I have two beautiful dogs that make me smile every single day, I can walk Bo slowly which gives my body what it needs to stay as stable as I can without causing myself problems. Kaos tends to be walked by his Dad as he is a lot stronger than I. My two skunks are my snuggle buddies, seriously one of the best pets I have ever owned in my life & I couldn't see any day without them. I still have my snakes, more so now than ever, but venturing into different species as my experience grows. My crested gecko's are another one of my favourite pets, I could never grow bored & now I'm finally into my inverts, scorpions & a tarantula, which I used to be petrified of so goes to show what knowledge can do to your fears. 

Cassius My Male Crestie

Maleficent, My Salmon Pink

I am extremely lucky to have all these wonderful animals in my life, they keep me busy, they keep me going & it's my soul passion in life. I have two people, as well as my husband, to thank for this & they are my two best friends who have given me the opportunity to experience things I never would have been able to & to learn & grow as the months go on. I feel more & more confident each day when I am in their company & they show & teach me things that you would never learn through a book. I take huge care & responsibility for my animals, their health & life is of up most importance to me & I feel this is a great achievement as well as my ever growing knowledge of learning new things. 

Up until last year I was on a roll with two exercise classes, Tai Chi & Kung Fu. Sadly after an accident last May, this has dwindled, part health reasons, part a lack of my own self wanting to commit again. I was extremely proud of what I had achieved, & although I have decided Tai Chi is not for me, I made a lot of new friends & would like to still stay in touch. However, I really did enjoy Kung Fu / Self Defence. I never say never. I feel this is something I would like to go back to, when the time is right. Things as you know, have been strained the last few months, I feel like I am still on that pressure cooker & it certainly isn't the right time to go back as I feel I wont be able to commit on a weekly basis. When I am ready, the green belt will be back on & I hope to regain where I left off....

Since transplant, (& even before) my life seems to have 'sieved' out people that were surplus to requirements I guess. I thought I had a lot of friends, a good few people who I could trust & would be there for me but in the past year that has certainly proved me wrong. I was at first sad for that loss, but as I look back it can only be a good thing. Words are horse shit and actions speak louder. Things don't change from being that five year old little girl in the playground, as you grow up, we're just that 31 year old in a massive playground, but the words cut deeper & wounds are harder to heal. I've found myself stronger than ever these past few months, I have many people that care for me, I know that. I am extremely grateful, but I only have a select few who I can trust and for that I am happy, I know where I stand.

May 2015

If anyone knows me from years ago, especially from my early 20's you will know I was an extreme drinker. I would love to go out and party, dance the night away and have a great time. It also became my downfall. If relationships or friendships went wrong, the pub was the first place I headed & where I would remain. I got myself into a lot of trouble (nothing police wise!) but personally, I wasn't at all well. Until I met my Stef, which people thought was a complete joke in itself, but we almost saved each other from whatever disastrous impending future was waiting for us... This didn't stop me drinking however, we would both drink quite a fair bit, go out on weekends , the usual really. However, ever since my transplant, something has changed, I didn't really like alcohol, I would drink it, but it would take me ages & I couldn't really get pissed. After two years of trying, having an odd social drink on occasions but never enjoying it, I have given it up completely. No, seriously. If you were to take me to the pub right now, I would order a fruit juice. It just doesn't appeal to me, I can't drink it, I don't have the urge to drink it & I certainly don't miss it. Friends think I am joking when I tell them but I couldn't be more honest. To me, this is a massive achievement, I am really proud of committing to something, even when everyone else around you tries to pressure you into it. I'm sure my liver is grateful & I've never felt better!

Lastly, as this seems to be turning out to be quite the essay! My marriage. On July 2nd this year, Stefan & I will have been married for four years. I honestly can't believe it's been that long since I was wearing my pink wedding dress, feeling like a princess in my Playboy fire engine! It has been really hard the last six months, we have had a lot to deal with personally, and it's still on going. I am an absolute nightmare to live with when certain medications affect me or I am poorly & he is a complete pain in the ass, whether he is too tired or there is something he really, really wants & he's like a stuck fucking record until he finally gets it!!! Yes, we argue. Quite a bit in fact, I don't think we would be normal if we didn't, but I love him & he is my absolute rock. 

2nd July 2011

We have gone through things together people wouldn't even dream of, it's been nightmare at times thinking we'd never wake up but we've still come out on the other side. Some days I feel like I should be on my own as I am sure Stef does too, but it just wouldn't work, we are a team & I could never see him not being by my side. I am so proud of him & what he does to look after us all & I love our partnership, you are my best friend Stefan, I hope we spend many more a year in this hellish, up & down rollercoaster we are riding together. 5 years together, 4 years married, with no regrets (or injuries), that's an achievement!  

Til Death Do Us Part

So, just a little read for your weekend on some of my achievements I feel I have accomplished. Basically, to me, everyday is an achievement, if I wake up that's enough, I know that's something that'll keep me going throughout the day. Making a tuppy & watching your favourite programme, saying hello to your neighbour, walking your four legged friend & having a cuddle at the end of the day. Smiling is just the icing on the cake. Appreciate what you have. Some, just aren't that lucky.  

Thank you for taking the time to read as always xxxxx

Up's & Down's High's & Low's

I thought it was a good time to update you with a few things that have been going on recently, especially since I had my Harefield appointment & my new additions are well & truly settled....

Clinic went ok, as well as I could hope for as I came home again. I have come to terms with the fact that my lung function is going to remain low, but long as I keep myself well, stable. A lot of CF's can live with a lung function of 30% for a good few years, I just need to stay as well as I can! If I become poorly I just know it will plummet & that's when I will start to worry. I have a few issues going on with muscle wastage & I am still having ongoing problems else where, but things are being monitored. People have commented on how well I am looking so that is of course, always a bonus & I had a lovely day catching up with transplant friends old & new.

Keith & I

Levi, Ten Week's Post Double Lung TX!

Dave & I. Skull Souls :)

I am next up in July, this will be a very important clinic for me as it'll be coming up to my third anniversary with these precious lungs.

What's funny is now, more than ever I am truly beginning to appreciate the gift I have been given & realise everything could all be taken away from me within an instant.

This has made me more determined than ever to enjoy life. Everyday no matter what is thrown at me, and to finally do things for me. Anything I wanted to do in the past present or future, anything I have wanted to get... (within reason as I am not a materialistic person whatsoever) Yesterday, for example, I got 4 piercing's done all at once. I don't know what will happen in the future so its about the here and now. I am chuffed to bits with them & plan to get more once these have healed... I also have a two sittings booked for some very special ink after the Summer so am currently saving my arse off for that & making sure everything is clean & healing well.... Believe me, if it's anything like my medication & treatments you will know I am looking after them religiously round the clock!!

Stefan & I A Few Weeks Ago At Woodlands

I have a few things to look forward too with regards to spending time with friends, up & coming birthdays, including my husbands & my own, and then both my wedding & transplant anniversary. I can see it being a very busy few months which will hopefully be enjoyed rather than wanting to be forgotten.

An update on our nephew Jack, sadly, has deteriorated very quickly & there is nothing that any hospital can do for him, however, he is enjoying lots of fun days out & spending time with people who love him very much... He always has a smile on his face & for that he's my inspiration.

My best friends are going through an extremely hard time at the moment so I am trying to be there for them as much as possible. They, (as well as a few others) make me see how much life is taken for granted and that you should grab it with both hands, I am trying to do as much as I can with them, get some amazing memories under my belt & in turn, hope that with my help things are a little less stressful for them knowing I am here for them to turn too. I just wish I could take it all away from them, but I want them to know I am always thinking of them...

Speaking of friendship, I won't name them on here, but I also want to thank a very special, thoughtful couple that really helped us in our hour of need. Words will never be enough... Thank you from the bottom of my heart.

Kaos & Bo

I'll leave you with some nice piccies now, more of my beautiful, ever growing family. Cookie, now has her little nephew sharing her tepee with her, Crumble is now 9 weeks old & has settled in brilliantly (he really is Cookie's nephew!) I literally couldn't love him more, if you are lucky and local! I am sure you will meet him on one of our strolls into town... :)

Cookie & Crumble

Crumble

I have also welcomed into my home Jinx my baby flat rock scorpion who only came home a few days ago, and Maleficent, my huge salmon pink female tarantula has been with me just over a month now. For someone who used to be petrified of even looking at a picture of a spider, I think I am well & truly over my phobia now I own one of the third largest in the world! She is truly stunning, and I consider myself very lucky to be surrounded by all my amazing animals. 

Jinx, My Baby Flat Rock

Protecting My Lungs In Case She Flicks Any Hairs

Maleficent

I hope you enjoyed the photos guys & I will write again soon...

Thank you for taking the time to read as always xxxxx