I’m a very positive, optimistic person! I have a lot of patience and understanding. I never moan, I never complain, and I take everything in my stride, but I’m really struggling now
I know it’s hard to believe as they say this disease is slow progressing, but I genuinely fell ill over night, I watched a rash develop all over my body which left me with permanent Livedo Reticular, skin thickening, Raynauds and bowel problems the very next morning. Since then, my symptoms and new symptoms have worsened significantly. This was only 5 months ago!
I had three rheumatology appointments in the space of 3 months, I was prescribed a high dose of steroids and hydroxy but neither made one tiny bit of difference at my follow up, but visual signs and symptoms had actually worsened - as noted by my rheumatologist.
That’s when I was referred to Dr John Pauling, a scleroderma specialist. However, that was on the 9th January. There was a delay in my appointment with Dr Pauling, because of funding issues due to the fact I’m welsh! I finally have an appointment with him on the 23rd April.
Between 9th January and 23rd April, I have had no follow up or check up, I haven’t even had blood drawn. Considering I was seeing my rheumy every 4 weeks and having bloods done weekly because of the severity of my condition, I’m struggling to understand why I have now just been left.......
I went to my GP on Monday about my shoulder - he asked me what weight do I use at the gym? I accused him of taking the piss right ?! He said he only asks because the damage in my shoulder is what he would expect to see in a body builder !! I’ve literally ripped my trapezius into two!!! I do not recall doing this, just a slow progressing amount of pain over the course of two weeks, until it was so severe I could not get out of bed.
He also prescribed me Laxido, as I have suffered chronic constipation for 5 months now. Laxatives are having no effect whatsoever! It feels like my whole gut is shredded and inflamed, I’m in so much pain. I look 9 months pregnant and in severe pain. I’ve lost so much weight and I feel weak, I’ve been nauseous and vomiting bile for two weeks now, although I have a full stomach. I also had fluid around my right ventricle heart valve that was proven by an ultrasound, but nothing has been followed up?
I’ve just this evening come out in the most horrendous rash all over my body! For the first time in 5 months, I’m really suffering
Doctors tomorrow, I hope I can have a colonoscopy ?