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 

Open week

A short blog tonight just to explain a few things:

over the next week you will see posts by others i will of course say who they are by. To give people an insight into living with CHD, RA and other life long conditions, i hope it will raise some awareness. You may alsop see posts from people who are in the lives of suffers so you get an extra view. I hope you enoy these stories.

xx