Prayers for Tom Trovinger

The other day I got invited to a group on Facebook called Prayers for Tom Trovinger. At first I was like who’s this I’ve never heard of him, but as the group is called Prayers for Tom Trovinger I thought something bad must have happened. So I made a post in the group here’s what I said (I may sound rude and inconsiderate here but I don't know anything about Tom if someone could message me and fill me in that would be great. To Tom even though I don't know you and not sure what's going on I hope you pull through buddy I'll be sending good vibes your way) And some very kind people got back to me and passed me some information on Tom. Turns out he is a FA person just like me and Tom had a massive stroke Sunday and is still critical. Please if you could take a few minutes to say a pray or send some good vibes Tom’s way he could sure use them thank you.

Here are some links for information on Tom

 http://curefa.org/ambassadors/tom/

http://curefa.org/ambassadors/face_of_strength/

Here’s the link to the group if anyone would like to post a wish to Tom

https://www.facebook.com/groups/368262286610544/368676516569121/?comment_id=368908113212628&notif_t=like

Having been reading the post by so many in the group it’s easy to see Tom is loved by so many my prayers go out to him and his family and fingers crossed he pulls through and maybe one day I will get to meet him.

Feeling Old and Disabled

Maybe this is a FA thing or just an every person thing? But sometime I feel old as fuck (sorry for my language it's just the way I’m feeling) and I know this is a FA one and really disabled. Like yesterday I went food shopping with my mum and my legs were not working probably for my transfers in and out of the car, I felt really weak pushing myself around Asda. Now I wasn’t tired I just didn’t feel myself, weird any fellow FA people feel like this sometimes? When we got back home I continued by dropping things and knocking things over I won’t lie it was a pretty crappy day. I woke up to day and the first thing I do is fall out of bed (I’m fine by the way I didn’t hurt myself) I’m guessing it will pass as this is not my first time feeling like this and I can’t be the only FA person to feel this way right? And I’m not even old really I’m 25 going to turn 26 on Saturday (I know I’m now on the wrong side to 30 now but still) I shouldn’t feel like an 75 or 80 year old man right? Because that’s how I’m feeling right now I guess it’s just another one of those days.

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