Nifedipine/blood pressure

[creditcrunchie]

it’s been a long time since I posted . I do however read other people’s stories and I think the conversations are amazing with so much advice been given thus encouraging people to often be able to advocate for themselves with the medics. I was diagnosed in 2015 but like many others believe the Scleroderma was present long before then. I’ve done well over the years not retiring until 79 (but I was a manager in ad hoc work so my work which I loved was spasmodic). The Beast has now affected my lungs and liver (but the liver s under control with medication) however my heart is also having problems due I believe to the lungs), but overall I think I will be ok for a while longer. I recently spoke with a lady at my Scleroderma check up clinic who had an operation and was very poorly post op. this led to her being diagnosed with Scleroderma and she’s now on dialysis 3 times weekly with our hospital sending her to a London Hospital. I didn’t have long to speak with her but I told her about this forum and I’m hoping she may have joined. Keep posting folk the Scleroderma community needs you. PS does anyone ever talk to friends about Scleroderma? I personally avoid it as it’s not worth the effort.

[Joan59]

hi glad your on this wonderful forum.

Like you I’ve had Ssc for the last 25 years now. I was told it was just crest at the time and for a long time it only affected my skin but the last two years things have changed and the beast inside has reared its ugly head and I now have pulmonary arterial hypotension and some changes in my heart. My specialist up in Sheffield are trying to manage the condition with drugs so fingers crossed.

I wish you all the best. Take care.

Joan

[positivedaybyday]

Hi,This site is very important to all our fellow sufferers. It offers support & individual experiences. It can be a place to share information or solely to let off steam if you're having a bad day.

Many times you can feel alone & vulnerable as the disease spreads its tenticles.

I do talk to some of my close friends about the disease. I have used leaflets from the hospital to help them try to understand the varying degrees & how Scleroderma affects me personally. I've also taken a friend to a conference on the subject hosted by my hospital. That blew his mind away, especially how it can affect your state of mind.

At this conference a consultant touched on the subject of friends. She stated that you could lose some friends along the way as they can't cope with the change in you. I found this to be true, especially with one friend who always offloaded their problems on me. I was always a rock for her but found she didn't understand what I was going through. Every conversation always turned back to her issues. She informed me I had changed! That was because I couldn't be that rock & I had to concentrate on positive vibes, getting better & not to carry other people's worries at that stage in my illness.

You do find out fairly quickly who will be there for you!

It's not the individuals fault. Some people can't help spiralling into the negative & I've found in one particular friend it has never changed over the years. Its just how they tick.

It's a very difficult & individual disease. Being positive is such an outstanding tool to help you through the rough times.

One of my friends who came on a regular basis to visit me at the very beginning of my diagnosis in 2017 confessed a few years later that each time she visited she feared the worst In her eyes I was going down hill fast as I had the fast progressing Diffuse Systemic Sclerosis.

She didn't expect me to survive but kept this to herself until I turned the corner after a successful stem cell treatment.

It can really surprise you which friends are there for you. Cherish the ones who stand by you. Xxx

[wiggywoo]

Most of my friends have disappeared since my diagnosis. Nobody really understands scleroderma and the many symptoms I have to cope with on a day to day basis. 14 years since diagnosis I have learnt to be content with living a simple life at home . Gardening, producing good wholesome food which seems to keep excess medication at bay and looking after my animals. They keep the stress levels down!