ongoing health

[Jaq1971]

Good morning to my just an update on my ongoing health scroll on if not interested and for those of you who are here goes xxx

On Monday I travelled to Birmingham and had my Gaul Bladder removed privately due to suffering chronic pain and over 3 stone weight loss since November 2022 they were amazing I was told the Gaul bladder was infected and thickned due to the scleroderma with sludge no stones it had to be peeled from my bowel and liver and they think but this had indeed been the cause of a lot of my back and abdominal issues . I am fully aware my systemic sclerosis and fibromyalgia raynaulds and esophigul spasms gerd and all of the other things that come with sclerosis are still battles I will continue to fight and that’s ok I will do this as no other choice . But my god the past two years of being passed from pillar to post and not one person admitting the issue with my gaul bladder or to frightened to touch me due to the lack of understanding of my condition had been hard it has caused me severe emotional anxiety I have never had mental health now anxiety attacks are a regular thing it’s awful i am half the person I was but I will fight back ! I have an amazing specialist in London now who have agreed to continue overseeing my treatment on an annual basis and all tests will be done through them for my autoimmune disease and now I will be able to see if there is any more damage internally from the sclerosis. to all my beautiful warriors remember only you know your own body shout the loudest until you are heard don’t be fobbed off without my daughter fighting my corner I don’t know if I would be sat her now things were dark for many months for me I had lost all of my fight but she wasn’t having it and honestly saved me 🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰

[Barnclown]

💞💞💞💞thanks for this detailed, beautiful, passionate, inspiring update

🤩💐💐💐💐👏👏👏👏 Coco

[Redwine53]

Daughters are wonderful and won’t let us go under - I have 3 who keep a close eye on me and are my cheer leaders. You are doing so well and if I think too hard about my systemic scelerderma I would be so anxious, I also have lupus and scelerderma and my husband died nearly 3 years ago, a year after I was diagnosed.

I had my gallbladder out last year in an NHS day surgery unit and I think it took longer for them than was expected, but they didn’t explain why, I had been waiting 3 years for the op cos of Covid.

Good luck and keep fighting and live life to the fullest you can. Plan some small treats which will keep your spirits up, I am trying to.

[Denny57]

Morning, I hear what you are saying about self help. I was told sometime ago after going for physio (I attended fully kitted out for my first session) at the hospital, that there was nothing they could do and I would end up not being able to move. Well that was that a right blow, my partner was in the waiting room and couldn’t believe what the doctor was saying.

Anyway Covid hit, we built our own therapy pool, completely hand dug, I had trouble digging but my partner give me a small chair, smaller child size tools and together we built this pool. It’s heated to combat Raynaud’s, it took us 15 months to complete and we travel miles to get the best deals on eBay. I use the pool everyday day, I swim for pain relief and flexibility, we decided to retire a year early as work wasn’t understanding about my condition.

I have many different medical conditions but according to Rheumatology (different consultant every time) nothing is connected. I changed my mindset, lifestyle and diet. Some days are harder than others and some days can be very challenging but you have to keep punching to stay in the ring.

January this year I wanted to take out extra life insurance and had a private health check, not good news, blood in urine (waiting to be investigated) NF, high risk of stroke, Diverticulitis, but not connected, it seems nothing is connected to Scleroderma.

I recently went to Cornwall on holiday and was in a right state as legs couldn’t cope but again my partner bought me some hiking sticks to help with the walking, again was very challenging but I did it. There was a pool on site but very chilly, that had an affect on my joints but kept moving and had an amazing holiday.

I recently used our endless pool (has a jet counter, (eBay) to raise money for Macmillan by swimming the length of the English Channel there and back, (took about 3 weeks) but again I did it.

I’m swimming, walking but gaining weight, that seems to be with since the new medication from the blood thinners medication. I need to revisit my dietary choices once again.

On closing I believe that there has to be a measure of self help and I guess knowing how far you can safely push yourself but most importantly don’t forget to listen to your body as sometimes it’s okay to take it easy and had a bloody good cry as there is a lot to deal with.

Good luck and keep challenging the doctors, find a personal safe pathway that makes life a little easier, don’t beat yourself up when your having a bad day, one day there will be more understand about this terrible medical condition.