After doing so well with consistently blogging throughout June I've had to take a little break from it over the past 10 days, so much has happened within such a short space of time (good and bad!) that blogging just wasn't possible really. At first I felt bad because I'd done so well with blogging every other day for a good few weeks that it sucked to have to put that on pause but I really needed the break I think. I wanted to do a chatty post, like old times, to ease myself back into things and just let you all know what's been going on recently! I wasn't sure whether to start with the bad stuff or the good stuff but I suppose it's always better to finish on a positive note so let's get a few rubbish things out the way first.
I was going to do a whole blog post about how my cardiology appointment that I had last week went but I didn't want a totally negative post to go up after staying so positive recently so I'm squeezing it in here. The most serious side of my condition Marfan Syndrome is the heart problems that have the potential to be life threatening. For this reason I have been closely monitored with scans at least yearly since I was a toddler and up until now things have always been pretty stable. The aorta, a big artery in your heart, often stretches a lot in people with Marfan Syndrome and if this isn't treated it can lead to what is called an aortic dissection where your aorta basically bursts and unfortunately this is one of the leading causes of death in those with Marfan. Lucky for me though I'm under a great team of doctors and recently moved to St Barts from Great Ormond Street, unluckily for me though they didn't have good news for me at my most recent appointment.
So, my aortic root has dilated (stretched) to 4.2cm and the point at which they operate is 4.5cm so they are starting to talk about surgery, major open heart surgery (fair to say that I don't think anyone envies my life haha!). I knew that I would most likely have to have my aortic root replaced at some point during my life but I didn't think it would be so soon, we are talking a few years time. I need to have an MRI as the echo results weren't very accurate and we'll know more about when I'll need surgery after that. I've got to be honest I'm not sure how I feel, I've so much going on right now I've not really had the headspace to process everything so I'm just going to wait to see what the MRI results say. Positive thinking and all that. On the plus side once I have had the surgery at least I'll be symmetrical with the scar on my back!
That's the boring bad stuff out the way, now onto what I got up to on the weekend! To help put a smile on my face after everything that has happened recently my boyfriend took me into London to see Matilda the Musical. It's been in my Top 3 that I want to see for a while now so I was over the moon to find out I was actually going to be seeing it! I saw my first musical Les Mis (which was amazing) last year and just the experience alone was the best so I couldn't wait. Matilda completely blew me away, everything from the music to the set was incredible. I've been singing the songs non stop since, when I grow upppp, and I still can't get over how talented the kids in it were. Growing up Matilda was one of my favourite books and films so to see it on stage was really nostalgic and the character was the same one that I had grown up with, Matilda made me see that it was okay to have my head in a book all the time and be a little different. It was a truly incredible experience and I was just want to do it all over again. I did spend 6 days stuck upstairs in bed recovering afterwards but it was well worth it!
Just this morning I got some good news also, I've got a date for the 3 week inpatient pain management programme I'll be doing at Stanmore RNOH. I'll be admitted on October 10th and will spend 3 weeks there (minus weekends) learning how to manage my pain better with the help a great team of medical professionals. It isn't a cure for my pain but it will teach me better physio, pacing and how to make my life just that bit easier. I'll be blogging about my whole experience and luckily I'll have lots of free time in the evenings and wifi so I'll still be able to blog and talk to you all! The only downside is the hospital food so you better believe I'll be packing a whole suitcase of snacks to keep me going!
I think that's everything major really, I'm hoping to be back regularly blogging again now but things might be a little slow as I'm still recovering from my day out, that's spoonie life for you!