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!! 

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.

 

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!!

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! 

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!