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Share Your Victories (Marfan Syndrome Awareness Month)

Aaand I'm back, guys! I know I've been away from Blogger for quite some time now, but I was determined to make a comeback for Marfan syndrome Awareness Month this February. I usually have a blog planned and ready to post well in advance but I'm writing it on a bit of a whim this time as I've had difficulty getting back into the swing of things, so forgive me if this all sounds a bit rushed. I've given some thought to what I want to write about today though, and I've chosen to do a 'Share Your Victories Challenge' which is an idea that stems from the Marfan Foundation as they are asking those affected by the condition to publicly share their victories against Marfan syndrome. It's definitely a challenge I feel able to participate in because as some of you will know, I've faced a few trials and tribulations of my own due to Marfan syndrome over the years. I haven't been through as much trauma as some Marfan syndrome patients have, but I still feel like I've been up against it for much of my life. I suppose just living with this unpleasant condition every day is a victory in itself, as well as putting up with all the unwanted comorbidities that go with it, but I might save all that for next time. Because out of everything Marfan syndrome has thrown at me, I think the ten-hour Spinal operation I underwent at just 13 years old was the most life-changing thing, so I've picked that as my Share Your Victories topic.

The operation I am referring to was a spinal fusion, which will be familiar to a lot of people with Marfan syndrome. We hoped that I wouldn't need the surgery until I was a few years older, but I had an aggressive curvature of the spine which was squashing my lungs and restricting my breathing. The curve was progressing all the time and my back was visibly hunched over, so I had no choice but to go ahead with the operation, whether I liked it or not. Two titanium rods were inserted at each side of my spine, along with a number of bolts/screws to hold them in place. It was almost the end of the day by the time I came out of the theatre, but everything went well and I got through it, so to me, that was a total WIN against Scoliosis/Marfan syndrome, although I don't remember thinking that at the time. I do remember spending five long weeks in the hospital afterward though, which was tough. I went through some excruciating pain, but with each day that passed, although I didn't think it at the time, I was overcoming this huge hurdle, and looking back on those days now, I see that as ANOTHER WIN against my condition!

After getting out of the hospital, things were difficult for a long time. I was laid up at home for months, unable to do much at all. But eventually, I began to adapt to life with rods in my spine. It wasn't easy, I struggled a bit, physically and mentally, but in hindsight, I guess I should've felt victorious because as rough as it was, I overcame it all at just 13 years of age. And that my friends, is called triumphant!! I just wish I had a picture of my 'hump' so I could show you all how much better my back looks now that it's visibly straighter. I only have photos from after the surgery, so on the first pic, you can vaguely see my 14-inch scar running down my back, which I love. I definitely do feel victorious about my perfectly straight spine and neat scar. I'll happily show it off with pride. Unfortunately, the other two photos aren't as attractive to look at as I've experienced some issues with hardware protrusion. This means the bolts and screws at the top of my spine have somehow come loose and are visibly protruding through my skin. It's really painful some days, and it's one BIG inconvenience to live with on a daily basis, but I don't look at these photos and feel defeated, I feel victorious yet again because by enduring this every day, I'm also overcoming a massive obstacle that's been thrown my way post-surgery, and that alone is a VICTORY in it's own right!! #WhatsYourVictory #MarfanSyndromeAwarenessMonth
The first pic is what my back is like on a normal day. The other two shows you what my spinal hardware is like on a bad day. It shows the reality of life for me with spinal hardware protrusion.


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