Wednesday 31 December 2014

2015

So as we enter Into the final hours here in the UK I thought I'd tell you about some of my adventures next year that are already booked!

So first up we have football tomorrow January 1st what a good start to the year! I'm off to stoke for an away match with Dan and I'm really looking forward to it! Hopefully we will get a good win!

Then off course my 30th comes In February but who knows what that will bring! 

In march I will be off to see mcbusted for the second time and in fact there second tour I'll be there!!! 

April brings olly murs with my cousin twice! Looking forward to taking her oldest to her first ever concert she will have a great time I have no doubt!! 

Then off to Seattle (lets hope my doc lets me fly!!) looking forward to some adventures in the USA!

May brings take that with my friend and my brothers 22nd birthday! 

August brings a family holiday to EuroDisney with my cousin, hubby and children and my aunt and uncle I am super excited for that!! 

I also plan to visit Dublin and Barcelona this hear well I hope so anyway! 

A very happy new year to you all have a lovely evening xxx

Monday 29 December 2014

A Boxing Day treat

Well after a lovely Christmas Day spending time with my dad and brother. Which I got lots of lovely gifts  from my family all rheumatoid family ESP loving my new bag! 

So I woke up early Boxing Day and got ready for Shaun to arrive. He arrived around 9.15am and off we went up to Manchester making good time. Now why is it when u have lots of time do you end up rushing! Or is that just me lol!! 

Anyway we had food and drink, and meet some club legends while eating our lunch. For someone with an eating disorder it wasn't the best, I mean I'm quite a fussy eater because of it. 

I got two pictures with legends of the club which I've included in this blog, hope you like them.

Special thanks to Shaun for inviting me much appreciated.






Monday 22 December 2014

Christmas week is upon us!

So this week is always made busy it's not being helped by a flare up!

So Monday arrived and a busy today I managed to get up relatively early, have my reiki treatment which always helps my pain levels and hopefully means I will get a good sleep tonight, here's hoping as I havnt been sleeping that well. Then off to get the turkey and other meat I ordered in October as I like to buy the meat for my dad for Christmas, then off we went to the dreaded supermarket. Now I will let you into a little secret i hate food shopping! Today was worse I needed some cat food for over the Christmas period, one supermarket was that bad there was no cat food and worse the ques were hideous! Next supermarket was a bit calmer but I swear we went round about eight times! Now a busy supermarket isn't good for me ith the wheelchair I end up taking people's ankles or getting baskets in my face! The fun of the supermarket! Then me and my brother decided to spend some time together and go off to watch Annie at the cinema fantastic film, also good accessibility for wheelchairs at the cinema we go to.

Tomorrow I am going to brave the shops once more! I have a parcel to post that I forgot about today (my memory is so bad!) then I have Togo and get a few more gifts and then wrap and delievery and then rest! I'm going to see my cousin Tuesday night so give her the gifts for the girls and her and hubby. 

Then it's Christmas Eve! First up I'm going to see my nan with my brother, I hope she likes the gift I got her. Then I'm off to get my hair done :) then for some food wi my dad :) then an early night.

Christmas day I will get up early, and give some little treats to my dog Ben and the cats. Then off to my dads for Christmas lunch and most likely a little nap lol! Then home to watch the soaps. 

Boxing Day, every year changes for me, three years ago I went to my aunties and spent time with my mums side of the day. Last year I spent the day with my friend Katy at the pub for food and wine!! This year however I am up early and off to Old Trafford to see my team play, with my friend Shaun, thank you for asking me to come with you Shaun it meant a lot to me. Staying over in Manchester until the Saturday.

Saturdays shall be home and relax after a busy week!!! 

I would like to wish all my readers A MERRY CHRISTMAS and a very happy 2015 

Xx

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!! 

Thursday 27 November 2014

Gary's experience of osteopenia diagnosis!

I suppose when you think of Osteoporosis you think of old ladies with a hunched back. It is regarded as a condition that affects older people in our society, in addition there isn't much awareness of the condition.

Probably the first someone realises that they have this condition is when they find themselves in hospital with a broken hip; by which time the damage is done.  Remember that broken hip have a mortality rate of about one in three.

This was the  story for my mum, who found herself on the floor about eight years ago, unable to get up with her right leg twisted in such a way that her foot pointed out at 90° to the side.  This was followed by another broken hip (this time greater trochanter) five years later. In addition to using up a hospital bed for about a month in total; it's also robbed an otherwise alert OAP of much of her mobility & freedom.

Around 18 months ago, I attended a talk given by one of the National Osteoporosis Society's representatives at my local Arthritis Care monthly meetings. I was quite interested in what she had to say, and indeed it did spur me into action! I was aware that I had a number of the risk factors which leads to osteoporosis. These being taking Proton Pump Inhibitors (ulcer tablets in other words) and a family (genetic) predisposition to this condition. In addition, the National osteoporosis Society has a website, where you can access a page specifically devoted to risk factors, one of the risk factors named on this page is rheumatoid arthritis.

There are of course other factors that can cause osteoporosis, namely,  taking steroids, having an early menopause, thyroid conditions, lack of calcium and vitamin D in the diet, sedentary lifestyle, lifestyle choices (smoking and drinking),  low BMI/ eating disorders, in addition to having health conditions such as Coeliac & Crohn's diseases.

I approached my rheumatologist, and asked if I could have a DEXA scan of my bones, due to the two risk factors I mentioned earlier. A letter was sent off to the osteoporosis nurse and some three or four months later I was having the scan. A simple enough procedure, which took a matter of minutes to complete and the removal of my trousers. About a month later I went to visit my GP on another matter, and while this other matter was the main reason for my visit I did ask if I could have the results of this DEXA scan... It came back that I had osteopenia.

While I haven't been prescribed anything for this "new" condition, I decided to do something about it myself and purchase a large jar of calcium tablets.

While some people may find taking calcium tablets hard to swallow, there are some alternatives, namely increasing your calcium intake via your food. eg Milk (especially skimmed), yogurt, cheeses, almonds, sardines (I suspect it's the bones), dried figs and currants.

 

Saturday 22 November 2014

Hand therapy

So for a while now I've been seeing a hand therapist (occupational therapist). She's been very good and we have been using splints and massaging to get them moving as they have been stuck for so long it's a long and slow process but it's working slowly. I'd like to show my splits then my hands after there 8 mins, which is the max because of circulation! 

This is my right splint 


This is my left splint! 


This is my right hand after splint useage 


This is my left hand after splint useage! 

There is much improvement from the start of treatment and I'm so pleased with the progress and the pain is worth it seeing these results!!! 




Sunday 16 November 2014

Sunday!!

Since I was little my family have always had a Sunday roast! Now even with pain it's a little different we no longer sit round the table as it's to much for me. But we my dad and brother catch up on Sunday. My favourite part of Sunday though is seeing the family pets mel and lucky! Mel is 7 years old and a black labrador she sits by you for your food til your finished then moves on to the next person lol 

Then there's lucky we don't know how old he is or what breed he is! He was a stray that wasn't claimed so became a permante fixture that was in 2002! He loves nothing more than a cuddle and a treat! 

Lucky in his favourite place! 

Saturday 15 November 2014

My friend in the USA sent me a special gift

I have many friends across the world! One lady I have met is Michelle we found each other as we both have rheumatoid arthritis and we have spoken many times. She welcomed me into a group on social media allowing me to connect with others mainly in America, it's such a fantastic group. They do a special swap called "the spoon swap" in which we are paired and send each other a spoon either brought or home decorated. My gift is still in the post so I won't post mine! But Michelle sent me 3 spoons and 1 has such meaningful words I will take it on my travels and take a photo :) I wanted to thank Michelle and share the spoon with you all 


Her son also sent me a spoon which is a smiley face and it makes me smile every day along with a beautiful pink decorated spoon with sparkles I love them all. The spoon above quote is "vicky may this always be your extra spoon" 

Shoes!

So I'm off to football Boxing Day to see Manchester United v Newcastle United with my friend Shaun and I'm really excited for this day! 

Now you have to dress smart and the rules say no trainers, OH NO! Now Shaun did speak to them and for medical reasons they said I could however with the outfit I had in mind I just couldn't wear trainers! 

So that lead me think I need Togo shopping! Now shoe shopping fills me with absolute dread! Partly because I just want to wear high heels and partly because I know how frustrating it is these days! 

So off we went to birmimgham my closest city! Now it's not my favourite place and certainly isn't my brothers! 

After a frustrating start and a few hours of various shoe shops I was feeling a little sad that I wouldn't find anything so i brought a Christmas present! We were about to give up then we dropped into Clarkes and was helped by a really nice sales person! Who gave me a few different choices, I loved some boots but they had a heel but they did fit me! I tried a high heeled pair unfortunately my foot just wouldn't go into that position! Finally I tried a new brand on for me and suddenly had to choose between two pairs, this is unheard of since I was diagnoised! I am happy to say I now have a pair of shoes and am lookimg forward to my upcoming trip to Manchester :) 


Scrapbooking memories

So I normally have a memory box which holds old tickets etc to remember things I've done since I've had rheumatoid.

However since my rheumatoid has got worse it was getting harder and harder to get the box out the wardrobe so I had to consider a new approach!

So I went into town with my dad today and brought a bumper sketch pad and so,e coloured pencils and got my hands on stuff in the living room that I had yet to put in my box and started to put it all together. With some glue I had in the house.

Now many of you know I've been having hand therapy and today I could see those exercises and stretches did me good, I could use the scissors, push glue out of my squeeze bottle it seemed an achievement! 

So I'll show you my absolute favourite page so far! 


Sunday 26 October 2014

Disabled football fans

As many of you know I'm a football fan, I love the game as a whole! But since becoming sick and ultermatly in a wheelchair I found tickets for games hard to come by because there are fewer seats available to people in wheelchairs. So I've been doing lots of research and written emails and now I've set up a petition so please sign no matter where you are.

Thank you

http://www.change.org/p/the-fa-change-disabled-ticketing-allocation?recruiter=171007369&utm_campaign=twitter_link&utm_medium=twitter&utm_source=share_petition

Thursday 23 October 2014

Appointments appointments and more appointments!

Hello!!

So I havnt really been blogging much recently because I've been sick or busy, what a mix ah?! Well first off I've had well no one seems to know but I've been literally falling asleep unexpedictly! I'm tired too I mean when did I start falling asleep at midnight lol! I don't enjoy sleeping because of staying in one position my joints really hurt in the morning! So doctors ain't really sure what's going on there.

I've been having a lot of appointments recently here's a run down, some exciting news too!!

Counselling

So many of you know I've been having some grief counselling to help me to deal with the loss of my mum I know it's over six years ago but it still hurts, I miss her every day. So I have been seeing a lady who's been helping me. We are coming to the end of my session now and not really sure what next I'm considering having private session to really get a handle on these feelings. But not due to finish until December so we will have to wait and see!

Hands

So I've also been seeing a lovely lady at one of the local hospitals and I swear she's a miracle worker! I've been seeing her for a while now and it's really helping me. I have splits to wear which are a little uncomfortable but they are working for me. My right hand which was the better of the two has improved with my one finger now going back straight which it wasn't before! My left hand and the worse has had a good improvement with a cople of degrees better in two fingers.

Physio

I've been seeing a new physio too she's really good! I've been doing many different exercises including standing with bars, swaying (LOL) and ball work and at home I have exercises to do daily. They have been really good and we are both pleased my one knee, my best knee! Has got a little worse but it has been flaring pretty badly! However my right knee that's "stuck" has moved a massive 10 degrees which is a massive achievement for all my team!

I also have many other appointments it's all fun and games! His week alone as of Thursday I've had 7 appointments and another couple Togo tomorrow!!! Lol I love being busy but it certainly takes it out of you but I'm working really hard to get my self back to dancing!!

On a final note of this blog, I recently passed my diploma in tourism management which I've been doing for a few months to fill a bit of time :)

Xx

Monday 20 October 2014

Gary has returned!

A little while a go my friend Gary posted about his journey with arthritis ( PsA) and how he was training to climb killi well he has now returned and I asked him to write a piece about his trip as I know my readers like to see the whole story :) So thank you Gary and congratulations again YOU DID IT!

I've never liked travelling alone, it really is out of my comfort zone.
On the 15th August 2014, I found myself on the National Express heading for Heathrow. Although I've travelled to Heathrow on the coach previously, this was this first time on my own, once I got to Heathrow I'd have to find Terminal Three for the flight to Kilimanjaro International Airport.
I arrived at the airport in plenty of time, and to my surprise I found terminal three quite easily. I sat outside and started eating some sandwiches.
The trip to Kilimanjaro was organised by Discovery Adventure, an organisation which has been organising and running such adventure trips/holidays for 20 years. Discovery Adventure had the vision to organise a facebook page for this trip, so most people going on this adventure had met via this social media already.
The first person I met at the airport was Laura, a very charismatic young lady, then a few others who were going on the trip then turned up. The first hurdle crossed, I was in the right place at the airport!
The flight was pretty uneventful, the transfer at Addis Ababa airport was boring, hanging around for several hours before getting the connecting flight to Kilimanjaro International Airport. The first view of Kilimanjaro and its sister mountain was when we were coming in to land!
The first night was spent in a Hotel, the following day was the first day of the climb, a trip by minibus and 4x4 to Machamp gate, at the bottom of the climb.
The first day hiking was through the rainforest which surrounds the mountain. First time in a rainforest and the first time to climb over 3,000ft. The rainforest seemed very much like any other woodland except with some vines!!!  The first nights camp was just above the rainforest, first night under canvas for at least 30 years, and not a good experience, the two man tent was had a rectangular floor area, and we'd managed to lay along the shortest sides. In addition, I was laying on two large stones which was sticking out of the ground, needless to say, I didn't get much sleep that night.
The second day's hiking wasn't as easy as the first day's. A combination of lack of sleep and altitude was having a real affect on me. I can remember feeling rotten, and at one stage at 4,300 metres I vomited, better out than in they say! Others in the group were also suffering the effects of the altitude. That night we had a talk by the trips doctor, he told us what happens with altitude, the fact that the body can't get rid of carbon dioxide except by passing it out via the kidneys, therefore you pee a lot more, hence the importance of keeping yourself hydrated. The guides has a saying, that they kept repeating "More Fire More Water" followed by "More Water, More Fire!"
The second nights camping was more enjoyable, we were well above the tree-line, at this altitude there was little vegetation, very dusty, but this did mean, that the porters who took the equipment ahead of us, could clear the ground of rocks under the tents.
The next few days hiking were a blur, probably the most remembered part of the trip during these days was having to get up out of the tent at night and having to go for a pee! One night I think I got up and out 12 times, which was a bit of an experience, firstly because of the cold, -5°C, and if you are sleeping in a four seasons sleeping bag, you sleep with very little on, just a pair of boxers! The idea being that your warmth warms up the sleeping bag, if you sleep with clothes on, then the sleeping bag is cold, and so are you!
So getting back to having to go out for a pee in the middle of the night in -5°C; let's say it was an experience, unzipping your sleeping bag was bad enough, unzipping the tent lets all the cold air in! Then putting your boots on, laces undone! Getting out and getting away from the tent to have a pee was freezing, standing there, paying a call of nature, just in a pair of boots, boxer shorts and a head torch!
Nights in Africa, just 3° South of the equator, are the same length as the days, around 12 hours, all year round. Sun rise was around 6:35 and set around 6:35 in the evening. Since at these altitudes you are above the clouds, the night sky is amazingly clear; the night sky is full of stars!  For the first time I could clearly see the Milky Way in the night sky! I couldn't make out many constellations, nothing was clear with all the stars present in the sky, it very much masked the stars which you expect tosee in the nights sky! In addition to them stars being in a "different " place in the night sky!
Day four of the trek was tiring; that night I went to be at 7:45 in the evening, after having food and filling my water bottles up. This was the night before the ascent to the summit. Some 4¼ hours later we were being woken up, to get ready for the ascent; the goal being that we would reach the summit around 9am.  The group set out at 1am with head torches on, sunrise was 5½ hours away. That days hike was a blur, some people dropped out at this stage due to illness (D&V had been going around the camp). You didn't have a grip on who was still in the party and who wasn't. I can remember seeing the sunrise that day, then we were fast approaching the summit; the last bit of the hike was overscree. I was fading fast! One of the porters grabbed my hand and lead me onwards and upwards...
The next thing I remember was approaching Stella Point, at this stage I was shattered. I took my bag off and sat down, and started falling asleep! I was woken with a kick from the porter (Shadrach) "get up!"
Then we were asked if we wanted to go onto Uhura Peak, so I did, it was hard going, just walking a few steps before stopping to catch my breath, then a few more steps before stopping again...
I did reach Uhura Peak, just about! I was hoping to feel better, but the altitude was really telling on me, Uhura Peak is some 5896mtrs above sea level, roughly 3½ miles up!
Walking back from the peak, my hands began to tingle! This was a sure sign of altitude sickness, at this stage, Shadrach lead me rather quickly back to Stella Point. My head was spinning at this stage. Shadrach called over another porter, and they rushed me down the mountain at lightning speed, with a hand under each arm. Within a hour or so I was down in Barafu Camp, at 4,600 mtrs. Needless to say, I was the first one back in the camp who'd made it to the summit! The rest of that morning, I slept in my clothes that I'd been on the mountain in.  The day wasn't over after some food, we had a decent down to Millennium camp, at some 3,000 mtrs above sea-level.
The last day on the mountain was walking through the rainforest; I'd picked up one injury during this trip, spraining my elbow when I turned over at night in my sleeping bag. During this last day, I was to pick up another injury when I slipped and fell and twisted my right hip, which is the joint which is most affected by my Psoriatic Arthritis. The path through the rainforest is very slippery and very muddy, and I managed to go arse over tit on this, twisting my right hip and bending one of my new walking poles in the process. I picked myself up and continued to walk.
That evening and the following day I really felt the extent of the injury to both my elbow and to my hip! We (the group) went out to Moshi, walked around to a few shops and ending our excursion in the Coffee Union, afarmers' co-operative, rather nice coffee it was too. I had real difficulty getting myself off the chair due to my hip, and injury that was to last for a month.
There's an estimated 25,000 people climb Kilimanjaro each year, of which between eight and ten people die. So, if you go up Kilimanjaro there's a One in 2,500 chance of dying. Another amazing fact is that the life expectancy in Tanzania is a mere 44 years, mainly due to AIDS. I was taken aback to see one of the shops on one of the streets made and sold nothing but coffins.



Sunday 21 September 2014

Being a a burden on Friends

I know I've blogged about this many times but u know there's always something to say or discuss around the topic of friends after all things happen all the time that change the dynamics of friends u know?

You see I have lots of friends or maybe that should be acquaintance, I love social media because it keeps me in touch with many people. Only earlier in the week did my twitter pals do me proud with retweeting this very blog and we reached just under 50 thousand people. My Facebook friends too shared my blog all of which helps me to raise the awareness of rheumatoid arthritis and I'm proud that most people I come across on social media now can tell you about rheumatoid and say it's not just arthritis you know! Many people wouldn't know what it was before they spoke to me so I'm pleased I've been able to help people understand ra a little more.

I'm real lucky to have friends throughout this world and that's great and many I'd have not meant if it wasn't for chd or ra and for that I'm really great full I've sure meet some awesome people and been able to visit lovely places and have other adventures next year!

Anyway back to what I find hard the most. I live in a town that is well my home town I was born here went to school here! Yet I don't feel I belong here I mean I see my dad, brother and cousins but I have no friends here in fact I don't remember the last time I had a friend pop by! That's part of the problem here I feel so isolated with having no friends!

Saying that I hardly see any of my friends after my mobility got worse I found I was reliant on my wheelchair until I had to totally rely on it. It's no fun having a friend in a wheelchair I guess who crnt do everything and go everywhere you can. I mean what a bloody burden having a friend who crnt dance with you or go In the main crowds at gigs or sit on the terraces at the football, or go in all the shops because of steps or just plane and utter disorganised shops! Who wants to go on holiday with a friend who crnt get there own drink or get in the pool .. Well no one does really that's the thing really it's no fun having a friend in a wheelchair well hey it's no fun being in a wheelchair you know?

I'd love to see my friends more and speak to them more but guess that boats well and truely sailed!

So yes I feel like one huge burden in my friends and just wish I had one friend who didn't mind spending time with me and doing all the fun things I can still do and do still enjoy, football, gigs, holidays, shopping, meals out, traveling.

Wow that felt good bet I have upset a few people but hey go u gotta express it!

O.s I know people are busy and have commitments this is just how I feel I don't mean to upset anyone.

High heels and me

I was reading a post in one of the groups I'm in (I have a big picture to share with you all when I've been on the laptop to do with this group!) anyway and the topic was what clothes and or accessory do you miss most? I didn't even think it was instant reply for me high heels!

Now I'm literally 5ft and I always wanted to be taller lol so heels were literally my thing! From high school I use to wear heels to get a bit taller! And through out light well u til 23 I wore heels in fact I loved heels so very much.

I had a collection of heels every colour you can think of even bright yellow! They were my thing I had far to many but I was always buying more lol! Heels made me taller gave me confidence!

When I got diagnoised my feet went really quickly the first place that actually flared up. I was so upset and distraught I bagged all my pairs up I must have had 70 odd and put them in a shoe bank!

Now 6 years on from that terrible day I cried as they went in the shoe bank! I still think of them and look at heels with awe oh how I wish I could wear just one beautiful pair of high heels!

I now wear trainers but they just don't make me as happy as high heels lol!!

So if you wear high heels smile extra wide because u know they feel good treasure your heels!

V xx

Friday 19 September 2014

Fatigue

Having rheumatoid isn't just about living with pain like that isn't enough but I also suffer with fatigue lucky for me it's not constant it comes and goes but when it hits it really hits.

Now the weathers changing the pains stepped up as it does every autum and I will focus on my up coming trip to Seattle to allow me to get through this tough autum/ spring

Anyway back to fatigue. This week I've suffered so bad it's been silly. Tuesday alone I could only stay awake for 2 hours before needing a sleep and had to foce myself to stay away to take my medication! I have no idea what happened on Tuesday I was that fatigued!

Friday again has been a tough day for fatigue I went for a nap as my body was lagging and guess what I woke up and I'd only slept for 3 hours!

But with this in mind I also suffered insomnia on Thursday night it was ridicules I just couldn't fall asleep even though I was absolutely knackered as the rest of the week. Some have questioned if I have ME because of how I can get for me it's ra just rheumatoid and fibromyalgia having a good go.

For me it's time to relax stay in and get through the winter best way I know a hot water bottle and the heating on!

So here's to spring :) xxx

Tuesday 16 September 2014

It's been a rocky few weeks!!

So I'm going to touch on a few things on this blog..

Firstly I have been seeing a new lady called sunita she's an OT who is helping me with my hand situation. She's really nice and takes time to listen which is important to me. We have have been working on my right hand Initially with getting better extension, this has worked my little finger goes a lot straighter! I have a hand/wrist splint that helps stretch my hand and then using a hand massager that helps work my muscles which helps with extension.

My left hand we are starting to work on now. We measured my hand at normal which showed bad numbers but expected. We then got a palm splint made and measured it again they had moved by 10 degrees!! But under pulling my fingers we can get another 20 degrees which means there's defiantly hope!

I have real hope for my hands again and hopefully that will be success and help my day to day life with better hand extension and usefulness!!

Then I met a new physio who took time to talk to me and listen to me!

We looked at my measurements not great my good leg is at a 33 degree angel which is worse than I expected. We looked at many things but unfortunately I was told that I won't walk again so I've been trying to come to terms with that.

I saw her a week later and she measured again after circling feet, bum clenching and knee stretching! My bad leg which is at 85 degrees was now at 75 degrees!! She had me on my feet well one leg trying to build up strength and get any movement or muscle building that's possible. I've been given another exercise a town round the foot and stretch that leg!

Found out I feel things in places most don't I.e top of my knee instead of behind!

Finally I found out that I have excellent core muscles!

So there's good and bad news I'm feeling a little unsure how I feel at the moment.

I will blog more

V xx

Heart update!

Well firstly I best update you on my heart appointment last month!

As always we were running late in clinic, I never expect to go in on time! I had my echocardiogram for my consultant to get a good look at my heart as he hadn't had one done in London for two weeks!

I chatted away with the lady doing the scan as always I get nervous and just go into motor mouth lol!!

I saw my consultant later and he said that my heart was good and enjoy America!


But ....

I then got a letter and I went total panic. My heart does had a leak but I found out this is common for people with my heart condition. After talking to Fiona my heart nurse I felt a lot better about the letter and was able to stop worrying so much.

All in all good appointment happy to see my team back in twelve months

Xx

Saturday 9 August 2014

Six years

This month marks six years since my mum passed away and six years since rheumatoid showed it's ugly head.

In 11 short days it will be six whole years since my beautiful strong mum lost her fight to cancer and how she fort a long battle with a smile on her face. You see I didn't realise just how long she'd battled u til she'd passed. All the time I was out living my life totally oblivious to my mums battle. Which makes me kind of sad because if I'd have known maybe I'd spent more time with her doing things my mum like going out drinking or watching ghost!

You see near the end she was in pain she couldn't eat she couldn't talk, she could write though she wrote a lot of notepads. But you know she kept smiling.

She left me a memory box, it had a letter and a notepad in it and it said so,e real nice things she called me "her tricky vicky!"

After my mum died I got rheumatoid and life got so much harder it was like being hit by two massive bricks in the face!

But six years on I've fought rheumatoid, I've fought an eating disorder and I'm in recovery now and I've suffered depression but I havnt stopped smiling and being there for my family and my friends. Some days I want to turn my phone off lock my door and say no more but that's not what my mum taught me she taught me to fight what ever you face with a smile on your face and know that your family and friends will be there for you because your there for them .. That's what mum taught me.

This week I'm starting my chemotherapy medication again i face it alone with a smile on my face and the knowledge I'm on my own. Come August 20th I'll be on my own come the weekend before I'll be on my own just sat here thinking and crying no doubt but that is life u have to keep going and make the best of it.

V xx

Thursday 24 July 2014

Heart hospital

So I havnt blogged for a while and I have a bit of updating todo really but first I wanted to write about my upcoming appointment.

So next Wednesday I go back to the heart hospital it's been a while since I saw my team and even longer since I had an echocardiogram and I'm seriously scared! It's not just about hoping the hearts ok but also the waiting to see if I can finally fly to America after disappointment earlier this month.

It'll be nice to Fiona and prof deansfield I'm hoping they can see a difference in me last time I saw them I just sat and cried. I hope my appointment goes well. I hope no procedures are needed I hope I can fly.

I'm just so nervous and anxious about this appointment I have butterflies in my stomach on a plus in a day in London with my brother!

Thursday 5 June 2014

Update and mays adventures!

So I haven't update for a while so I thought I'd do a little whistle stop update from me! After all it's good to talk sometimes!

So since I last blogged I've been seeing my gp regular who's helping me finally see that light at the end of the tunnel there's a long way Togo but I'm definitely seeing the light it's getting brighter!!

My eating has improved!! I went to a restaurant recently and had rare beef (yup you read that right!!!) and then I went for pizza with my brother to! I know it's not that big but for me it's a real big thing because of my eating issues so I'm really pleased with that!!

I started seeing a councilor to help with the loss of my mum and I think it's helping to be able to talk things through. I know some don't like the idea but for me it works well and it's helping me get back on track.

I also started seeing a hypnotherapist and this is really helping me see things better and helping me to start thinking less negatively again which is quite a feeling!!

So other than that ..

I went to London at the start of may with my cousin we had an absolutely fantastic time, we went to the royal Albert hell for the first time and it was fantastic. We had a good chat and lots of laughter and joking! And some fun with the wheelchair and luggage lol!!

Then I went to Manchester the following weekend to meet up with my friend and see mcbusted who were amazing and we had a few drinks in the Lowry after! I've never sang so much lol! We also got breakfast which is unusual for me but then I had drink a rather huge glass of wine haha!!! (It was more like a bucket!!!)

Then I went back to Manchester 2 weeks later for a fun filled bank holiday weekend.  I met up with my friend mark and we didn't go to football this time, (many regular bloggers may know he's my football buddy!!) we went and got a light snack well I did (who'd have thought is be the one eating!!) then checked in and I had a cheeky lye down!! So when Duncan showed up I wasn't ready ops! I got ready with his guidance as it was raining and of course I wanted comfort! We went to spoons and met up with Eric and some of Duncan's others friends and the court yard then headed to the venue to see some brilliant bands, chameleons my first time live what a great band! Wedding present and neds atomic dustbin who were also good! Then the walk or roll back to the hotel! Sunday was exciting as we had planned Togo to rio Ferdinand's restaurant rosso's the service was fantastic and the food was lovely! We then went for a quick change if clothing and off to coronation street tour! It was a really good day. Monday came and I was all emotional because I was leaving Manchester and saying goodbye to my friend and something felt different don't know what but something had changed.

So now we are in June and I'm off back to Manchester for soccer aid with my cousin and I am so excited to take her to her first ever football match and of course to the theatre of dreams, old Trafford!!

I'm going to start updating this more as things are moving quickly with me now. I really hope you enjoy my posts and thank you to my readers who have stayed on this journey since 2011 it's been tough writing at times, we've shares some good and bad times through this blog, I hope there will be many more good and positive times ahead.

Thank you finally to all my friends for sticking by me and of course my family for always being there xxx


Sunday 13 April 2014

My first trip to Manchester in 2014!

Early January I got a text from mufc saying congratulations you have tickets for the capital one cup v Sunderland! Hurray!

So I rang my friend mark, booked the hotel and we was ready! I met mark at Piccadilly as always me from my Birmingham train and him from his Yorkshire train. We got into a taxi off to the hotel. Unfortunately our room wasn't ready so we left our luggage and went into Manchester. We visited the football museum which was good to visit and I really enjoyed it, although the lift wasn't for me!!

The hotel rang to say the room was ready so off we went back. It was marks first visit to the Lowry and I think he enjoyed it! We chilled out for a bit before getting some food, you crnt best room service it's super yummy! We then got ready for the game, now as I'm use to winter games I wrapped up warm but I forgot my blanket yet again!

The game was one I won't forget in a hurray, it went to extra time with a late strike from Chica then penalties. Unfortunately united lost and we then had to leg it for a taxi back to hotel! We wasn't very happy but at least a friendly taxi driver!

Over all a fantastic time in Manchester and it's always lovely to catch up with my friend and my football companion, here's to more games :)

Xx

Friday 11 April 2014

Garys kilimanjaro climb

Life is a journey....
In October 2013 I decided to "get fit" I was fast approaching 50 and I'd recently seen a video on Youtube of Dr Arvind Kaul, consultant rheumatologist at the Royal Free Hospital, London giving a lecture on Psoriatic Arthritis & Psoriasis.
This clip was forwarded to me by a friend; it had quite a chilling effect on her, and it certainly made me thing. It highlighted the fact that this Arthritis is an Autoimmune  Disease and as such is "systemic" in nature, i.e. it just doesn't affect the joint, but it also affects the bowel and the Cardiovascular System as well.
Autoimmune Diseases, like Psoriatic Arthritis, Lupus, Rheumatoid Arthritis, Crohn's Disease, does shorten the life expectancy of someone who's affected by one of these diseases, not that they occur in one's, myself I have three of these diseases, Psoriasis, Psoriatic Arthritis and Vitiligo, although I suspect I may have more!
Most of my life I've been overweight, and I'd be the first to admit it. Roughly three years ago, I had an appointment with my Rheumatologist, and the usual weight and blood pressure checks were done before seeing the consultant. Once in with the consultant she had a go at me over my weight! "Your one hundred and eight kilos!", my thoughts were: "Your point being?"
I'm used to working in "old money", pounds, shillings and pence, I don't do this fancy metric stuff, give me an Acre before 0.4046 hectares any day of the week; so I worked out how much 108kg really was..... and it came as a bit of a shock, 17 stone!
Gazza needs to go on a diet!
Through healthy eating, mainly slimming world foods and diet, my weight gradually came down, until I got stuck at 14 stone, I decided to undertake some exercise.
I already take my dogs out for around a mile for both their morning and evening walks; but I thought I really need to "up" my game.  I gradually increased this to walking to three miles, which roughly take an hour to do on pavements on the flat. It was a step in the right direction...
During the rather nice summer of 2013, my wife and I decided to go to Brecon for  a day out, nice sleepy market town in Powys, Mid-Wales. The usual way of going to Brecon is to take the A465, up the Neath Valley, turn left at Hirwaun, join the A4059 through Penderyn and eventually joining up with the A470, the main North South road in Wales; shortly after joining the A470 you come across a mountain called Pen-y-fan, which is the highest peak in the Southern half of the United Kingdom, it stands at 886 metres.
We pulled into the car park, just south of Storey Arms, which is now a Youth Hostel run by Cardiff Council, it used to be a Coaching Inn in days gone by. Both my wife and I attempted to climb up Pen-y-fan, turned out to be a bit of a none-event, we only managed to get around a third of the way up, before turning back. This mountain wasn't going to be easy.
The weeks that followed, I decided to up my walking by doing a hill near me, this being Neath Road. It took me around 25 minutes to complete this hill first time, a trip of around half a mile, and climbing roughly 100 metres, once I managed this a few times I then started to walk into the forestry,  and up a steep track there, nick-named "Cardiac Ridge" by the local fitness instructors and participants of Nordic Walking. I started trying this, and although out of puff, I did manage to do it, I was starting to get fit, the height of this hill above sea level is around 340 metres or roughly 1,000 ft  the walk to "cardiac ridge" is around 3¼ mile (5km) round trip with an ascent of something like 600 feet (180 metres).
At the end of October 2013 I went to see my GP, informed him that I'd like one of them gym passes that he could prescribe with a view to improving my general fitness and shift my weight loss below that 14 stone that I'd been stuck on! So in addition to having long walks, I was now attending the Gym three times a week.
October & November 2013 were nice months, not too much rain, very little in fact and wasn't too cold either, one Sunday morning, I decided I'd make a second attempt at climbing Pen-y-fan; so I set out at 7:10 am for the 50 minute journey to the car park on the A470 just south of Storey Arms, I was in the car park at 8:00 am and soon on the Beacon's Way, up to the summit. I pushed myself hard, perhaps too hard, I could feel my blood pulsing in my ears! It took me over an hour to reach the summit that day, then roughly 50 minutes to come down the same way I went up. I was home by 11:00 am that Sunday morning, I was greeted by my wife saying "You are back early, didn't you make it up?" "Oh, yes I did" was my reply.
The following weekend I tried Pen-y-fan again, this time it was easier.
I'm now climbing up Pen-y-fan every other weekend, and I've now started climbing it twice, ascending using the Beacon's Way path, walking over to the Corn Du peak then descending via the path leading to the Storey Arms, a round journey of some 4 miles, and a climb of around 1,500 feet.
In addition to "getting fit" and the weight loss, there have been other noticeable improvements in my health, namely my Blood Pressure and Heart Rate, about a month ago I took my BP and pulse, my BP was 126/67 and my resting pulse was a mere 48 bpm!
Here are some photos I've taken on my climbs of Pen-y-fan. In some of the photos I took you can see snow on the ground, on some days the wind-chill took the temperature down to around -10ºC (14ºF); you may appreciate how hard this mountain can be, in fact, it's used by the Special Air Service as their training ground.








And what next? Well in August this year, I'm looking to climb Mount Kilimanjaro for Arthritis Care, I'd be grateful if you would sponsor me, via my "JustGiving" page below, Thank You!


Tuesday 8 April 2014

Having a friend with rheumatoid arthritis

My prospective as a friend of a rhuematoid arthritis sufferer

In 2012 i became friends with a rheumatoid arthritis sufferer and it opened my eyes, because up until that point i had only heard a little bit about this terrible condition. It takes over your whole life and does its best to control what you do and dont do .
My experiences of being a friend of a RA sufferer are varied i have heard daily stories of unimaginable pain and ive heard screams of pain close up, and it brought me to tears hearing which makes me feel guilty as im not the one in pain, but its so hard to hear someone you care about in that much pain, but it's no where near as hard as actually being the one who suffers from it, as a friend i feel powerless because all i can do is be there with empathy and words of comfort.

By Mark

Getting a diagnoises of PSA by Gary

I can quite vividly remember the day I fractured my left elbow when I was 4½ years old; I'd just started school, when I caught a cold, my father, who was a shift worker, decided to take me to a park, to get me out of the house, which had a children's play area.. 4½ year olds being what they are, I was climbing up the wrong way on a slide, fell off and that's how I fractured my elbow.

Some 24 years later, at the age of 28, I started having aches and pains in my left elbow, which wasn't much of a surprise since, after a fracture of a joint, osteoarthritis can be expected some 10 years later; following an X-ray, it was confirmed that I had "arthritis" in my elbow.

During my late teens, I developed duodenal ulcers (something I inherited from my father), I ended up going back and fore to my then GPs surgery. Due to a lack of care, I ended up making multiple visits to this surgery in Port Talbot, much to the annoyance of the Doctors Receptionist.

When I was 32/33 I started developing pains in my hips and knees, which was annoying to say the least, the only thing offered to me was paracetamol; around the same time I starting getting pitted nails, which is a classic sign of psoriasis. However, I didn't have a rash anywhere! The pain continued and I gradually had one or two X-rays, at the same time I continued having problems with my stomach, so continued with the anti-ulcer tablets in the forms of Tagamet, Zantac and finally Lansoprazol.

Life continues, no nearer to a diagnoses beyond "Arthritis" ; at the age of 38 I started having issues with a rash on my scalp and the top of the crack of my butt. Went along to see my GP and was given some cream to go home with, very nice of him. The rash waxed and waned and a few more trips to Doctor fuckwit without a diagnosis.

Some 3½ years on, the rash was still waxing and waning, I was with my Brother-in-Law one day and the rash was particularly bad, so since he had psoriasis himself I asked him: "Hey Mark, what do you think this is on my Swede?" the answer came back "Psoriasis" Armed with this new diagnosis from a Greengrocer I decided to go back to Doctor fuckwit: "I've still got this rash on my scalp, could it be Psoriasis?" To which Doctor Fuckwit replies "I'm not sure what it is, but it's definitely not Psoriasis"

A few months later, without a diagnosis from the mediquacks what the rash was, and particularly bad "dandruff" on my shoulder due to the rash. I went one Monday morning, circa 7:30 to be the first one in the queue to see on of Dr Fuckwits minions, with a view to getting to see a Dermatologist. I went in and seen one of the Partners, explained the situation that after 3½ years I hadn't had a diagnosis of the rash; I was promised that he's write a letter to a dermatologist. Two months later I phoned the local hospital, to see where I was on the waiting list, only to find out that I wasn't, the Doctor in the surgery hadn't written to anyone!

At the time I was working for the NHS in an open planned office, full of NHS professionals, I phoned the GPs Surgery to ask what went wrong, a plea of ignorance was given! I then phoned the hospital back and got an appointment with a consultant on a dinnertime for £50 in a few days time..... sounds ideal, however the fly in the ointment was that I required a letter from my GP, when the consultant told me this, I remember saying "Your fucking Joking!" I then called the GPs Surgery back and asked for a letter to see this particular consultant; phoned back to see if the letter had been done, it had, but to a different Consultant! If there was a competition for incompetence, this guy would come second! I blew my top, I think everyone in the open planned office heard the conversation that day.

I eventually got to see a Nurse Practitioner (Dermy), nice woman, totally different ballgame with this professional; she took a look at the rash and diagnosed "Psoriasis" after calling in the Consultant to confirm her diagnosis "I knew it was psoriasis" said the Nurse Practitioner "just from the areas affected in the letter!" So, the question went through my mind, why didn't the GPs in Doctor Fuckwits surgery?

I think anyone with health issues, who has access to the internet decides to plug in a few symptoms or disorders into Google; I was no exception, so I plugged in "psoriasis" and "arthritis" and behold by the power of Google there was page after page on "Psoriatic Arthritis"

Armed with this knowledge, off to see Doctor Fuckwit, "I've recently been diagnosed with Psoriasis on my scalp! I've googled this and arthritis and I've come up with 'psoriatic arthritis', can I see a Rheumatologist please?" to which Doctor Fuckwit replies, "Well, we don't know it's that, but if it is, I can deal with it!"
I returned back to see the Dermy Nurse, explained that I've been having issues with pains in my knees, hips and left elbow and I've done a google search and see that there's something called Psoriatic Arthritis. To which the Dermy Nurse replies, "Do you want me to refer you onto a Rheumatologist? I can do that for you, no problem."  What a Eureka moment!

Got to see a Rheumatologist within a few months, thorough examination, and the promise of another appointment in six months time. The next Rheumy appointment came around , discussion with the Rheumy resulted in a comment that "it's likely that you've got psoriatic arthritis" and was handed a leaflet on Methotrexate, I was then told to read this leaflet, and we'll think of putting you on this if you want to go on it. So some 15 years after first having joint pain at the age of 28, I had a diagnosis, and getting on a specific medication for the type of arthritis I was affected by!

Methotrexate has made a real change to my life, a life where previously I was in chronic pain, and walking like an "old man" in my early 40s, to someone who is pretty much pain free. However, about a year after I started taking this drug, I contracted Chickenpox at the tender age of 43. One of the downsides of being on this drug, is that your immunity system is so suppressed you are prone to contracting any bugs that are around.  To this day, I'm still on Methotrexate, and fortunately, it's still working well, however I am on a higher dose than what I started with, and having blood tests on a 12 weekly basis, but my life is largely pain free!


Gary