Sunday, 21 December 2014

Thanks to all those close

What a year 2014 has been with lots of people coming in and out of my life, so many to thank I do hope I remember everyone!

So first of all I need to say a special thanks to everyone who has been involved in my health this year, or as I affectionally call them "my team" from my GPs, ENT specialist and his nurse, my cardiologist and his nurse, my counsellor, hand therapist, physio and others who have been involved. You have all worked really hard this year to help me keep my independence and keep me on the right track, from the many hours of just talking things through to the treatment I have recieved. I am as always extreamly thankful to have such great people around me fighting my health issues, you all are great and special to me because you keep me fighting when I've felt like giving up, as I did at the start of this year.

My family, thank you for being there when I needed you, my brother for coming to the cinema with me most weeks and seeing in his words "some bad films" this year lol and some good ones too! It's funny even the cinema staff say hello to us!! To my cousin Carolyn for always being there in good and bad times, talking things through and keep my nails at a good length!! To everyone else thanks for the help/ support this year.

To my friends on twitter thanks for your continued support and thanks for reading and sharing my blog you guys are the best! Thanks for the chats and offers of support with my health it's really been appreciated.

To two special groups on Facebook, first "faces of rheumatoid" you guys have really made my year your love, support and friendship (from across the Atlantic!) has been incredible I really do thank you for always being there through the good and bad times, I thank you for your Xmas cards and spoons they really do make me smile, love you all. 

"Babes" thank you for welcoming me back into the fold, you are such a lovely group of people, thanks for the support and friendship this year, it means a lot to me.

Now after thanking the medical team, the family and my lovely two groups, it's on to some special people!! 

First up the girls!! 

Firstly Mary, thank you for being so understanding after my medical team pulled the plug u til the next year, thank you for suggesting my favourite book of 2014. Most of all thank you for all the love, support and encouragement and friendship this year. I can not wait til April to see you and explore Seattle and the island (that I can not remember the name of!) xx

Katy, thank you for always being a good friend to me and being supportive and so glad we got to have a great time at EuroDisney it was fantastic to spend a few days together having fun and leaving everything else behind. I hope 2015 is a good year for you xx

Claire, thanks for always being an ear and for your support and friendship, so glad we got to have fun in Manchester seeing mcbusted. I hope 2015 is a good year for you.

Michelle, I feel so connected to you through not just our disease but also by our experiences. You have been such a good friend this year and I love the spoons you sent me and the tshirt and scarf. Your friendship and love have meant so much to me this year. Thank you for being there, I hope 2015 is a good year for you and maybe we get to meet some day soon.

Margaret, thank you for finding me and talking to me about my mum it has been so lovely to hear about mum I'm her younger days. So glad we have formed a friendship too through the common bound of my mum. I hope 2015 is a good year for you.

Carol, special thanks to you for helping me so much with my trip to Southampton you are a legend in my eyes! I'm so glad we are friends, thanks and I hope that 2015 is a good year for you.

I have probably forgot so many ladies, but I'd just like to say thank to each and every one of you for always being there and shpportiing me and for your friendship.

The lads!! 

So I shall start with peter, some times thanks isn't enough, but thank you for everything, listening to me, helping me out and for the lovely gift and teaching me about predicting the weather and reading the weather station and what it means! You test my mind in a good way, you make me use it again which is great, you have helped me in so many ways. Thank you so so much and I hope 2015 is a good year for you.

Brian "barmy!" I always call him Brian, but thought I'd share his nickname too!! Thank you so much for listening and helping me out and helping me make sense of things when I really wasn't sure on things. Oh and thanks for talking football with me it's been a lot of fun! It's been a pleasure to get to know you this year, I hope that 2015 is a good year for you

Chris, thank you for your friendship and talking Manchester United with me, in hope I have helped you and look forward to seeing you at a game soon (please MUDSA!) I hope 2015 is a good year for you

Gary, thanks for your friendship this year and teaching me about bees and honey it's been eye opening . I hope 2015 is a good year for you 

Duncan, thank you for your love, support and friendship this year. I really value our friendship and we have had some good times with year, maximo park, the all dayer and of course an afternoon in the pub! I hope our friendship grows this coming year and we have more fun times. I really hope 2015 is a good year for you.

Eric, thanks for your support this year and for looking after us in Manchester after the maximo park gig much appreciate. Hope 2015 is a good year for you.

Thank to all of you and everyone else that has been part of my life in 2014 and thanks for all of your friendships and support, love to you all.

Lots of love and thanks 

Vicky xx

Medical review 2014!!

This year has been up and down on many fronts so here it goes!!! 

Firstly tackle the hearing. Well I got new hearing aids at the end of 2013 that were in the ear ones but they kept falling out due to transferring so I went back to audiology and they seemed a little "stuck" in the end they found me a headband aid, it's proper old school, I had one when I was younger except now it's digital! Unfortunately although it worked it hurts as it has to sit on the bone and tight at that! So next stop was to see my ENT consultant who is really nice. He decided to look down my ears and decided that he would send me for a CT scan, and we discussed the two options at this point. First is to go under general anersetic and see if he can reconstruct my ear bones or secondly to go to another hospital and have a BAHA done. I see him in January to discuss the CT scan results and I'll find out what he thinks is the next step, I'll keep you posted!!

My eating is a lot better after being discharged from my eating disorder clinic I have managed to maintain my weight a whole 6 stone! I have eaten more foods, there's still a lot of work to do but I'm defiantly improving in a positive way, so I'm sure we will discuss this more next year! 

My depression has been up and down all year I hope with some none medication treatment I can get a better hold on it next year.

My hands after having therapy on them we have seen some improvements it's been tough but seeing the positive improvements makes me really happy! 

Physio has been hard but again seeing positive results. Next year I have 1 more hand physio appointment then we are going Into the water for some hydrotherapy which we all hope will further improve that leg of mine. We are also looking at a plaster cast to again aid the recovery, who knows what 2015 holds but I can say that my leg is straighter I can touch the end of the bath lol!! 

As for my rheumatoid, it's been a tough year, I have flare ups lasting longer and more painful than ever. The fatigue has been worse, I mean sleeping for 19 hours is unheard of for me! I am getting stronger in some areas and weaker in others! It's certainly been a rise this year, maybe in 2015 we can further kick RA's butt together. 

Heart wise I'm ok my valve is leaking but not real change since my last echo thankfully.

So that's my brief round up of my health in 2014, 

Here's to a happy and health 2015 :) xx

Thursday, 18 December 2014

Review of 2014!!!

This year has been relatively quiet for me but I've had a lot of fun and been busy working on my self, but more of that in another blog, u know me I like a fun round up a medical round up and then a look forward to next year!!

2014 has been mainly football and music it's been a lot of fun! Where to begin I guess in cold January! 

It was due to be my traditionally hibernation and quite month! Instead my beloved team gave me tickets for the capital one cup in January! A cold night at old Trafford, off I went as the loyal fan I am haha! We lost but an exciting finish with penalties! Sunderland went through to the next round! In fact it was my first trip to Manchester of the year it was good to see the city! 

We then arrived in February and it marked my 29th birthday and in fact my last birthday in my 20s I had to do some thing! I received lots of beautiful cards from family and friends that made me smile. I had a hectic 29th! First up I was off to Thomas land in tamworth and I know what your thinking your going to Thomas land vicky why! Well it was lovely to spend the day with my uncle, cousin and my favourite two little girls! I waved frantically as they went in rides I watched for the pictures on the screens! I even had a good laugh at the roller-coaster my young cousin wanted to go on about 6 times .. Shame cousin vicky has a bad heart!! I then went home and went for a lovely birthday meal op at the pub and then home to open all my cards and gifts, it was such a beautiful day spent with family. 

Then we hit march! Now in November of 2013 I order'd tickets for maximo park at the academy in Manchester! Finally it was time Togo!! I brought a new black dress for the occasion! I was really looking forward to seeing the band I'd liked then for years but not seen them live. They were amazing! I managed to catch up with my friends Duncan and Eric which was lovely. We had a few drinks before hand saw the gig then well lost Duncan (lol) and ended up in town having a drink with Eric! Well I know I told everyone I needed the toilet going up the Main Street In Manchester!  It's not often I get drunk but for a change I did! Was a proper good night catching up with friends and seeing a band I'd wanted to see for many years!!

May was a mad month for me! I felt like I never unpacked! First off down to London with my cousin for the sunshine concert which was lovely, our first visit to the Albert hall! We stayed in a new hotel which was nice apart from having side door access for wheelchair users (the fire exit) and then to get to the bar we had to take the workers route in dusty hallways, because of being a wheelchair user! But the hotel was nice. Sunshine concert was fantastic with olly murs the main attraction! 

Then I arrived home unpacked and packed again! This time I was to Manchester to see the new supergroup Mcbusted. I was off to Manchester to meet my friend and then off to the hotel, a nice catch up then off to the gig. After we went back to the hotel and sat in the bar for a few drinks and a further catch up! Then on the morning a nice hot chocolate and breakfast before traveling home.

Then we go on to the final part of may for me. Again I packed for a long weekend and off I went to Manchester. I again met up with friends, Duncan and Eric as we went to an all dayer, though being in the wheelchair it's hard to keep a group together as there was a number of us. So ended up split up which is a shame as I felt a little isolated and unable to enjoy it with all my friends. But never the less I enjoyed seeing the chameleons live for the first time and I have to tell you they were TOP, and if you have the chance give them a listen you won't regret it. I also had the chance to eat at a new restaurant that was lovely food and ambiance. Then a coronation street tour which I thought was excellent although I do admit the cobbles are not suitable for wheelchair users, I kept getting stuck!! Waving goodbye to Manchester always bring a tear to my eye!

Then we go to the first weekend of June! Now I never expected to write this but I took my cousin to Old Trafford! Off we went back to Manchester! We stayed in the city centre for a change and then had a lovely meal which had a particular funny part, my cousin ordered an item that was in Italian! When the order arrived my cousin was Adamant it wasn't that so the waiter came over with the menu and said did u order this? Yes she said and handed over what she said she hadn't ordered, hilarious!! (It was much funner than this but I crnt really word it very well!). I'd been chatting to Duncan and we ended up in flixton! We sat there until we needed to get over to old Trafford and me and Duncan just talked and talked none stop, it was so lovely to catch up and have a good chat. Then me and my cousin went off to old Trafford to watch soccer aid and it was a decent match, I have to be honest Carolyn only went because olly murs was playing! We then spent a few hours waiting for a taxi lucky for us we had a good chat with the security guard and he let us sit in the hotel! We then went off to the bar in our hotel and rolled into our room at some late hour! The following morning off we went to the train station only for our train to be cancelled ops!! 

Me and my brother went off to Redditch to a night of comedy, the night of the World Cup semi final! We went off to see Jason manford and I have to admit I had the best time I've not laughed so much in such a short space of time! Me and peter both really enjoyed our evening a top night.

In August I caught up with my friend from Somerset and we went to a pre season game up at old Trafford, Manchester United v Valencia and our first look at our new manager. It was good to be back at old Trafford and seeing my friend. 

A break in the monthly but I thought I'd share this year I've been going to the cinema weekly and I've got to admit I've become a bit of a film lover! I go with my brother and we have seem many films this year, good and bad!

In August I went for a mini break to EuroDisney with one of my oldest friends and her son. We went early a 5am start! We went via Eurostar which was an experience!! We had a lovely few days and it was so lovely to spend time with Kate and her don't the journey home was via Paris and it was fun, we ended up in the first class lounge at London euston until our train was ready to leave back to Birmingham! 

Now it was time for my annual Disney on ice trip with my cousin and her children! The girls were dressed up as princesses and off we went to Birmingham. We had a lovely time the youngest was a bit nervous at the start but once one of her favourite princesses appeared she was happy. All four of us had a lovely afternoon.

My final trip to this point is my trip to Southampton in met a lovely friend carol, we had a good catch up and then off I went to the football a game I enjoyed but still shocked I managed to attend on my own. 

Over the Christmas period I'll be attending two more football games and I'll try and blog about these over the Christmas period.

As you can see I've had a few adventures this season and a lot of laughs. I only have one thing to say, regardless of disability go enjoy life and enjoy things you enjoy doing, don't let disability or in my case wheelchair stop you. 2015 I have more adventures plans but I'll tell you about that later 

Xx


Tuesday, 16 December 2014

Gary's take on methratrexate

For anyone who has to have regular blood tests, it's important to make sure that these appointments with the phlebotomist (aka vampires) are regular and at the correct time.

Up until about two years ago, I was having four weekly blood tests, the blood tests were and still are necessary to measure such trivial things as platelets, liver function, kidney function, infection levels, bone marrow function etc. ( when I wrote "trivial" I was being flippant).

Why the need for such regular blood tests? I hear you ask, well, that's because I'm on a drug called methotrexate for my psoriatic arthritis.Methotrexate was developed in the 1940s, and has three main uses:  i) induction of abortions, ii) chemotherapy drug used to treat cancer, iii) used to dampen the immunity system in the treatment of autoimmune conditions. As you can imagine, if it's used as a chemotherapy drug then it's going to be toxic by its very nature of what it does. Hence the need for regular blood tests.

I'm lucky that my blood results are very stable, and so I was moved onto 12 weekly blood tests; while this does mean having less needles, it does mean that I have to keep track of when these blood tests are due. I use a excel spreadsheet for this, putting the date of my last blood test down and adding 84 days to that date. I'm coming to the end of my monthly prescription of this drug, so will be needing to order some more. To get my prescription, I have to have the blood test, no up-to-date blood test no medication! The beginning of next month is the next time I'll have my bloods done.

On the subject of needles, I do make a point (excuse  the pun) of having a regular flu jab in the beginning of October; since methotrexatedampens down the immunity system it makes you more susceptible to communicable diseases.

Wednesday, 10 December 2014

Southampton away

Three weeks ago I got an unexpected email saying "congratulations you have Southampton away tickets" woohoo! Now I won't lie,it cheered me up but it also filled me with dread returning back to Southampton.

So because the game was changed to a Monday night game the original person said they couldn't attend, which I fully understood. I tried a few others no luck! Then my mums friend son said he could come fantastic that's that sorted.

Fast forward to the day before the game, oh no he has a sickness bug and after advise was best not to risk it as I couldn't risk getting Ill. I was very lucky to have a friend step in and help and found someone to go with .. Unfortunately that fell through as well!! 

Returning to Southampton was a huge step for me due to an incident that occurred, I won't go into details but it wasn't very nice. Arriving back at Southampton Central was stomach clenching. I felt sick, and dizzy but I needed Togo for myself.

Well upon arriving I met with one of my arthritis friend for the first time and it was so lovely to meet her. Town was heaving with supports! After a brief trip down memory lane and seeing my old uni halls (I thought I was going to throw up) funny enough I didn't stop talking I think my nerves got the better of me! 

I met my friends lovely dog Logan and cat coco what beautiful animals. Although Logan is a jack Russell just like my Ben and he put Ben to shame he was so well behaved!! 

My friend rang Southampton and they told us that I could go to the game and just get me to the stewards, great time to get ready, I wrapped up very warm! 

We arrived at st Mary's and greeted by the traffic personal who allowed us to park by the blocked off road so my friend could take me up. Now on greeting the first steward they were like oh I don't know and when I said I'm an away supporter she said that's even worse!! We were taken to the away end, where the stewards were still uming and aring, my friend kept saying about the reception, I was saying I will be fine, defiantly ok! I told them I had friends in the crowd! They eventually agreed as long as my friend met me after! So off I went Into the game! 

I'm sitting right by the pitch and thinking oh my god I'm at an away match on my own in a wheelchair and a female ... Sugar! Then I got into the game singing loudly and cheering! I even went flying forward when RVP scored our second goal!! My heart was pumping I can assure you of that!! The fans were fantastic all 3,500 of us! The people around me and near by asked if I was ok and I'm like yeah, we were fist bumping in happiness! Lol

The staff at Southampton fc were fantastic allowing my friend to park close by to drop and pick me up and the steward who supported me to and from my seat also fantastic and she kept asking if I was ok and giving me the thumps up to make sure I was ok.

I was FINE and I really enjoyed my away day experience. I'm not going to lie when I realised I was going on my own to a game I nearly cried infact I nearly told my friend I wasn't going to attend I was a little scared but I am so glad that I did it. One female .. One united fan ... Alone .. One big I DID IT!!! 

I was going to stay at my friends unfortunately it wasn't practical shame I fancied cuddling up to Logan! So instead I went to my hotel and we chatted until 1am in the morning ops! She then went home and i tried to get some sleep. Unfortunately a hard bed and sitting In the cold for 3 hours wasn't going to end well and I ended up crying in pain painkillers taken and lots of hot water an a towel on my shoulder! I eventually ended up going back to sleep before my friend was back saying time to get up vicky! 

Then it was time to head home 2 and a half hour trip home and ready for an appointment!  I then fell asleep for half an hour before my cousin came around 7 I don't remember much about it apart from getting my gel on! I then slept for 12 solid hours and my joints are hurting but I'm ok!

So thanks to Southampton fc, the united fans because I could easily have felt uneasy and thanks to my friend you all paid your part.

Final words from me ... The past is the past and I confronted it yet to be conquered but I made a positive step. I overcame a lot of things with going to this game and I am so proud of myself.

Ladies and gents don't give up on what you love because of disability, you can achieve anything and everything you desire.

Xxx

Saturday, 29 November 2014

Heart stories

Even before I got rheumatoid I got but u don't look sick even thought I have a heart condition. I mean how would they know I have a heart condition they can not see it but then how does anyone know there friend/work collegue hasn't got an invisable illness? Just because you can not see it doesn't mean if is not there.

When I tell people I had open heart surgery at 4 years old they say wow ain't you brave or at such a young age or oh so your fixed now? No no I am NOT fixed I live with congenital heart disease I may need further surgery when I'm older who knows. I have tetrology of fallots and I'm proud I'm a survivor.

Now I tell you a story as a little baby my mum knew no one else with a heart condition she needed to reach out which she did too a family an organisation that helped my mum and they S and R became part of my life and there daughter E.

I don't remember a lot but what I can tell you is my mum and S use to have long chats when they caught up or on the phone! As I grew up and we went on holidays I use to get into a little mischief with E .. All I'm saying is sand bay and mud!! Those were the days!!

Through E and then "teenage young at heart" I made lots of friends who were like me heart kids .. We did an activity holiday .. Now absailing was never going to be my fortay but hey a nice looking instructure helped us down (thank you that man!!) or the time we went to Weston and drank blue ice drinks and made our lips blue, terrible trick to play!! Or the time we danced and sang to reach for the stars! 

We all had heart problems invisable illnesses no one else knew but us coz we were just ordinary teens having fun to others! That's my point though don't judge a book by it's cover you don't know if someone is sick.

My mum died in 2008 and the people mum reached out to in the early years came to pay there respects they were there until the end for my mum.

Now all in our late twenties early 30s we are still friends and shared things though Social media, those memories are special :) 

Turning 30!!!

Next year I turn 30! Now when I was younger I use to wish I was as old as my cousin Carolyn LOL who ironically turns 35 tomorrow! However now I'm heading to the big 30 I don't want to be that old any more!! I'm sure some of my readers have been there heading to the big 30 it's like it marks true adulthood lol!! 

I remember turning 21 and saying to my mum the next birthday will be 30 it seemed a life time away! I of course expected my mum to be here celebrating with me as she did with my  18th 21st and well my 18th is better not spoken about haha! A small insight I got very drunk (thanks mum) and I couldn't read my speech thanking various friends and of course my family oh and James who I nearly forgot In my drunken state if it hadn't been for his dad!!

Now like many people I had an imagine of what my 30th would be like, I mean for a start I would be walking and causing mayhem! I had invisisadged my mum would be here planning a surprise party surrounded by friends and family. I mean who wouldn't!

Instead I'm not waking which upsets me but I won't let it stop me, I mean imagine all the toes I can run over!! But most importantly my mum won't be here to spend my 30th with me and that upsets me so much, I mean it's a big birthday and she should be here celebrating with me I know she will be with me in spirit though, my mum would never miss a party!! 

As for what I'm doing who knows I would like to extend the celebrations for as long as possible! I'm seeing mcbusted a month after my 30th to the day! I shall wake up in Manchester on my birthday with my cousin :) so that will be nice and hopefully I'll see some friends too. We are going for a family meal on the build up to my birthday as well, be nice for us all to be together it doesn't happen much since my mum passed away. Of course there will be some others missing my mum and my granddad who are both no longer with us. My nan but I'll go see her for a hug I'm sure and of course my uncle andy as he lives in Canada.

So I'll leave my ramblings here I'm not sure why I wrote this, I guess it was just to get off my chest how I feel, the differences and who's missing. 

So here's to turning 30 wheelchair and all!!