Monday, 19 October 2015

A sorry state of affairs

Hi Guys,

So the last couple of weeks have been a bit mad. I had my cousins wedding mid September, which was so so amazing. Initially I was determined not to wear my bright blue knee brace, but in the end decided to opt for safety rather than vanity. I had one crutch throughout the day and managed to stay pretty much on my feet. I sat down a lot throughout the reception, as both my knees started to swell up & my muscles were aching but I did manage to dance, briefly, just moving my arms. The whole day was really beautiful and it was so nice to get out of Newbury for a couple of days.

The 4th of October was my 24th Birthday! By this point I had planned to already be living in Cardiff so it wasn't the exact weekend I had in mind a couple months back, but it was still a really brilliant birthday. On the Friday before hand I went out for some drinks with friends, it was pretty quiet but so lovely to see everyone who came. It was the first time I had been out in ages and I even risked it with no crutch or leg brace... Probably not the best idea but nothing too awful happened!
On the Saturday I went to Bath with my parents to visit my brother, Dan, who started Uni there in September.  On the Sunday (my actual birthday) I woke up to pink balloons decorating the lounge & some of the best presents! I even had a card from Toby!... Two of my best friends are currently on the other side of the world, which can be pretty tough, but they had remembered and had a card sent in time, which is pretty amazing of them and really, really made me smile. I went out for lunch with Mum and Dad before a bit of shopping with Mum. It was quite a chilled out day but perfect!

Through out this time my knees haven't really improved, I have good and bad days. Sometimes I am able to walk without crutches and there is minimal swelling, at this point I always think it must be getting better. The next week, the knee swells up so much I can't bend it and becomes so painful. What has been really strange, is my 'good' knee has often been worse than the 'bad' one. I've been soldiering on, counting down to my ortho appointment to discuss my MRI, waiting to find out what I have actually done.
Three months on from the yoga class I received a letter saying that my appointment had been cancelled and pushed back by another 2 weeks to the 29th of October. It is safe to say I had a bit of a melt down. I have been unable to work properly, walk Toby, drive or move to Cardiff & the thought of any more time not knowing what was wrong panicked me a little. I spoke to an ortho receptionist who I have to say was unbelievably rude & failed to help at all, she even disconnected the call when I asked to speak to someone else. After a good cry I rung PALS, hoping they might be able to help. Cutting a long story short, a couple days later I received the good news that the appointment had been bought back forward by a week, to the 22nd. Not ideal, but a definite improvement!

In the mean time, I also rung my GP, mainly to get more pain killers but also to touch base & to check whether she had access to my MRI results, as I still didn't know what I had done. She hadn't been sent the results (the new way of doing things) but was able to look it up for me. The scan revealed that, I had done no damage to any tendon/ligament etc and my joint was perfectly healthy. Safe to say I was confused. For 3 months I had been told by multiple people that they thought my meniscus had been torn. Although it has not been formally diagnosed yet, it is thought that my knee pain is actually an arthritic reaction linked to my Crohn's...

Yup. Three months of pain, sitting on waiting list after waiting list, being seen my so many different people & it turns out to be something completely different to what they thought. I had a bit of a wobble when I found out, the whole process has been exhausting and so frustrating, I couldn't really believe it.
I'm still not sure what the outcome is going to be but from what I understand, the yoga will have weakened and irritated my knee joints & my body reacted badly causing an arthritis flare. Normally, this is associated with active Crohn's, however, I am currently not experiencing a Crohn's flare and my bloods are normal. Aha this is where it gets interesting! This form of arthritis, although caused/linked to the Crohn's Disease can apparently go un noticed on bloods but also flare and react independently to the Crohn's. Brilliant news all round.

I am yet to know anything about treatment or when I will have any of it sorted. It is, however, looking like something I will have to manage and deal with, like the Crohn's, for the rest of my life. Fab. This revelation, does however, explain a lot. Why both knees were bad & why it goes in waves of severity, with one minute fine and the next awful. It is thought that I will be referred from ortho to rheomatology, to sort this all out. Who knows how long that will take but at least we are now (fingers crossed) heading in the right direction.

Right now, it is safe to say I'm pretty fed up but also un surprised. On hearing this, many people will be rolling their eyes, "classic Gabi", "always something", "here we go again" - & you would be right, but it also sucks. I'm sure I will get my head around it & once under control will be managed and kept stabile so I can get my life back to normal. Three months is a really long time to put pause on everything.

Due to the fact I have no idea when it will be sorted, I have started to do my research and take matters in to my own hands. A bit of a lifestyle over haul has occurred which I will explain more about in my next post later this week.

Lots of love xxx

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