Last night I had episode 4 and a half

Last night I had episode 4 and a half of the freaky pain attacks I’ve been having, and as I was flat on my bed in some hardcore pain my friend Ricky come over. As my mum explained to him what was going on, he told us he suffers from gallstones and when he has had from them he said the pain paralyse him. After he saw me last night with the sweat coming off me he said it sounds like gallstones, so maybe I do have them. Later on in the night my brother had a friend over and it was his birthday and a few other friends of theirs came over and they bought him round a cake. It was a Chinese sponge cake and it was nicest cake in the world. Of course I had some (I love the cake like a fat kid love the cake) and if indeed I have gallstones and maybe eating the cake brought on the half episode maybe it did all I know is that cake was so damn good it was worth being in pain.

So maybe if I do have gallstones (which it’s indeed looking like I do) I’m going to have to stop eating bad foods like KFC, pizza, sweets and cake and trade them for carrot sticks and heather foods. Come when I see the Doctors I’ll be passing all this new information on to them and we will see where we end up, I’ll keep you all posted and updated.

So i've been think of changing my blog name form Justin's Blog to ScrimBlog. Why? you may ask because i am just weird like that, i like taking my surname Scrimaglia and mixing it with stuff. Like my Ipod i call Scrimpod and my xbox gamer tag it Scrimbob which is a mix of my surname and  SpongeBob SquarePants.

So yeah people of the world who read my blog let me know what you think, yea or nay on the ScrimBlog leave me a comment on here or Tweet me on Twitter @JDScrimaglia.

Anyway i'm off got friends staying for the weekend so to everyone i hope you all have a great weekend. :-)

1 Year On

Today marks officially one year from my first foot op. As my ops didn’t go to plan and smooth as we hoped I am going to run through what happened and weigh up the pros and cons one year on.

The original plan was to have both feet done at the same time but since I have FA and the heart problems to go with it, but my surgeon soon said no to that as it would be to stressful on my body to be under for that long. We came up with a new plan to have one foot done at a time, have one foot done then go home and have two weeks at home and then go back and have the other foot done. (But that never happened either

 The op went fine it was when they came to stitches me up the skin was not stretchy enough to cover the wound, so they had to get rid of the skin, anyway to cut a long story short 3 Hospital later and a lot of Hospital hours racked up.  I finally got free and then had to wait about 5 months till the second op, as they had to make a new plan because they didn’t want me going through all that again. (If you want to know what I went through then check out this video I made explaining all http://www.youtube.com/watch?v=j0V1NLGX98s)

Pros and Cons

Let’s start with the cons the bad stuff.

Well my right foot is now a lot heavier than it used to be due to all the metal and new added skin they had put in/on.  As for my left foot it’s now a few inches shorter due to them has to remove more bone, so there would be enough skin to stitch me after op number 2. The only other bad this is after having multiple operations done I have been left very scared in both feet and my thigh.

Time for the pros the good stuff.

Both feet are flat and straighter and just look like normal feet when I have socks on. My feet fit nicely into trainers now; they never did before as my heels would not touch the floor. I used to get a lot of pain and like a burning feeling in the balls of my feet and now thanks to the ops I am pain free. Having straighter and flat feet make it easier to transfer. The best bit saved for last my right foot is now a Hobbit's foot which I am very proud of it. Thanks to the skin they took from my thigh to place on my foot the hair still grows.

If you would ask me if I could go back a year knowing full well of what I went through, and then asking me if would do it all again my reply every time would be yes. Here’s why because life is just better when you two happy feet.

September the 27th Can’t get here any Sooner

September the 27^th can’t get here any sooner I swear. As late last night I was transferring to the toilet, now I wasn’t doing it any differently to how normally do it but last night I tweaked my back and bloody hell did it hurt. Then as I was getting into bed I fell which probably didn’t help things at all. I woke up to day at now this maybe pushing it a bit far but it feels like my back is broking. Which now my mum has put me on bed rest and I have to rest my back.

Come the 27^th of September when I see the Doctors, I’m going rolling in there and throw a big bitch fit. Because with Doctors and the NHS in this country you seem to only ever get anywhere after you have a good moan at them. 

I am sorry as I feel like all my posts are just of me moaning about my back. They won’t all be I promise I’m just worried, freaking out an sick of being in pain at the moment.

On a more positive note I am over 1000 blog views so big thank you to everybody who help me reach that. Please keep reading and sharing and help me spread the word of FA (Friedreich's ataxia) to the masses.

Many thanks

Justin Scrimaglia

Help me Reach the big 1000 blog views and Sharing other FA blogs

My all time page views for my blog at 953 which for the few months I have been blogging  for is really high, people must enjoying what I am doing. I would love to reach 1000 page views so please keep reading and sharing my blog and help me achieve the big 1000.

Three people I know with FA too have started doing their own blogs now (I’ll post some links to the blogs so please check them out)  if I have inspired them to start blogging then cool and also it helps raise awareness for FA  (Friedreich's ataxia) and I am all for that so girls keep up the good work :-).

The first blog is by Chloe

http://eekasaurus.blogspot.co.uk/

And the next one comes from Holly Almond

http://hollyloualmond.blogspot.co.uk/

And the 3^rd blog comes from Laura Bishop

http://laura92b.blogspot.co.uk/

So please go and check out their blogs and leave them some feedback.

And also Jamie Lynn Cusick asked me ages ago to share this for her and I said yes but I have had a lot going on in my own life I just forgot sorry. Jamie is another female that suffers from FA and she has writing a few books about having FA and living with it. Now I have not read any of her books yet but I want to I will post the link below and please take a look.

http://www.jlcpublications.com/

Playing The Waiting Game

I see I haven’t done a new blog in a few weeks, so here goes. I haven’t been feeling myself for last couple of weeks now; I’ve been worrying about my back. (And as I don’t keep a diary this is like my diary for the world to read, or whoever wants to read. By the way thank you if you do read, I appreciate it :-)) Anyway let’s get back to it, there has been quite a few restless nights, not due to pain nut due to worrying and thinking what is going on, thinking the worst. There has been no news from my GP Doctor about the referral to see the experts, but hey I played enough Super Mario Bros as kid to know you don’t get to go from level 1 to fighting for the princess in a click off your fingers, you have to play the game. (The waiting game with my Doctors) and jump through their hoops or green pipes as it was in the Super Mario Bros world.

I have had 3 of these weird and freaky episodes of really bad pain in my lower left side of my back. And I have not been back to my GP Doctor I have been in contact with another Doctors I am under. I spoke with her over the phone after episode number 2, and I have an appointment on the 27/09/13 to see her. She knows I have scoliosis but over the phone she said it could be a gallstones symptom as in some cases they can come on with movement, now I’m not ruling it out but I’m not sure it’s that. The other thing we disused was about the new wheelchair and seat I am using, which I talked about in my blog a few months back. See going back about two years now Doctors I was see were unhappy about the way I was sitting in my chair, saying my posture was off. So forward by a few months and they sent me Salisbury to the  Moire Fringe Clinic to have this test done which I can only describe it as like when they do the high and low peruse on the weather it was like that. (The pic i have added is what it is like)

 The results came back from that I needed to have a seat cushion made which was a little raised under my right bottom cheek to even me out and improve my posture. Moving on anyway all the got put on hold as ops and getting this new wheelchair and the guys just gave me a gel seat cushion with extra gel packs to work  as the raised bit. Now I’m not saying it’s because of this seat cushion I am getting the bad back pain, the only thing I know is that I never had pain in my back like this till I started using this wheelchair and seat cushion.  All I know is that I would much rather it be gallstones or due to this seat cushion, than my scoliosis getting worse and having to have that back op done, because still to this very day that scares the hell out of me. My back still gives me a bit of pain every now and again it’s just when these episodes kick in it goes into overdrive, but hey ho life goes on I’m just going to the play the waiting game and fingers crossed when I see some Doctors they can find out what’s going on and what’s causing the problem.