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An Insight Into My Week

Last Friday I had my regular check up appointment with the rheumatologist, the consultant is a nice lady who I've seen for the last few years, her kind & caring manner always puts me at ease. She told me once again that treatment is minimal for those with my conditions & I left feeling downhearted at the thought of living with these issues for the rest of my life as they continue to worsen. I'm not going to lie, when you get told time after time that your problems can't be solved, it makes you feel pretty unhappy. Yet again I had attended an appointment that was of no use to me, which seems to be becoming quite a thing for me these days. The following Wednesday & Thursday I had two more appointments at the cardio clinic. Wednesday's wasn't so bad, they just fitted me up to a monitor to track my heart rate which I could cope with, unfortunately I can't say the same for Thursday's appointment, I had to have a Tilt Table Test which wasn't an experience I'd ever want to repeat. I was strapped to a table & hooked up to a number of machines. The table was then tipped upwards & forwards and I had to stay there for almost an hour whilst Two cardiologists monitored the machines! This was all done in a dark room and  I felt dizzy & sick the whole time! When it was eventually over and I was finally unhooked from everything, they told me to remain seated for a few moments whilst I got myself together and had a drink  but I just wanted to leave as soon as I could. My Mum & sister were waiting for me outside and both said I looked a little out of sorts when I came out but I'm sure they would too if they had been hanging in the air for an hour! Now I've said all that I guess I should explain why I needed these tests in the first place, I don't want to go into too much detail, I'll save that for my next blog because I don't want this one to become too long and boring. But basically, I've got a thing called Marfan Syndrome & because of that loads of different health problems can occur, such as POTS, which is what they are testing me for right now, it's something to do with blood pressure & heart rate. If the results come back as positive, meaning something is wrong, then I'll probably be put on medication for it, which wont bother me as I've been taking medications all my life. My rheumatologist also requested me to have some blood tests to make sure there's nothing contributing to my severe joint pains lately & I'm now waiting for her to write to me with the results.

Well I think that's it for now. I've tried to give a bit of an insight into my week, which has probably made a boring read but if I'm honest, I find it rather therapeutic as I don't discuss this stuff with anyone so blogging gives me a chance to get it all off my chest. For my next blog I'm thinking about talking about marfan syndrome/Hypermobility and how that has affected my life, but that will be a pretty long story so I might have a few weeks of planning to do before I'm ready to publish it.


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