Hi, I am new to this site, to be honest found it while doing a spot of research so decided to join and give it a whirl, have been reading your questions etc but thought I would pluck up the courage and say hi. I am not the best at talking about myself to be honest so here goes.... if anyone can share any experiences similar to my own then I would welcome hearing from you. I am a pretty positive upbeat person so would love to hear from similar people
I am 37 and havent always had the best of health, I have had a pacemaker for 13 years and have a condition called Vasovagal Syncope which means I have seizures and black out a lot. I have been having a lot of chest pains, joint pain, swelling of knuckles, elbows, knees etc and generally feel exhausted all day every day, I have been like this for years but recently my gp referred me to a rheumatologist who diagnosed me with Antiphosphilipid Syndrome, Lupus and Raynauds. It was all a bit much to take in but then 2 weeks after this I became extremely unlucky and ended up in A&E with a PE on my lung. I am 7 weeks on, still off work which frustrates me immensely, still in pain in my chest, still feel exhausted and trying to keep my spirits up even though deep down I am terrified what all this means for me and my future. I am on Waferin and will be forever, on clexame injections as my INR is all over the place, on Hydroxychloroquin for the Lupus, morfine for the pain so I rattle when I move haha!! I am geting married next year and I just want to know that I will be ok I suppose, I know thats probably a rididuculous thing to say as noone knows what the future holds, but I am scared and although I have the most amazing family and friends ever, I feel alone if that make sense. I am trying to stay strong and positive.
Thanks for reading this