My body feels ill and old it's getting to stage where I carnt put up with it anymore
Well I got sceraradma my dad died wi... - Scleroderma & Ray...
Well I got sceraradma my dad died with it at 49 am 50 in my heart I new what I'd got but didn't want to have it things change everyday
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Vicmark
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9 Replies
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So sorry to hear of your problems. I hope that you are under a good rheumatologist. I have had scleroderma for over 35 years and in spite of everything I have not let it destroy me. I was given only a couple of years to live in 1996 and here I still am! I guess a positive attitude helps but you also need good medical care and medication to help relieve the symptoms. There have been many advances in medicine since your father died so don't give up on yourself.
AM
Hello Vicmark,
I am sorry to know you are feeling so upset about this and my heartfelt sympathy regarding the loss of your dad to Scleroderma. However there is so much progress in medicine and so much more known about this condition that I would encourage you not to give up. Let your doctor know how you feel and ask what else can be done to help you to feel better.
You sound a bit depressed and this is not unusual with us. My symptoms seems mild compared to yourself but I also experience changes on a daily basis. I am managing to cope with things fairly well at the moment.
Scleroderma is only one of my medical problems but I love life in spite of my difficulties and I have a great medical team.
You didn't say what treatment you are having and wether you have seen a specialist for you Scleroderma. I hope you are being looked after and that you are getting some support from family and friends. You probably need a course of antidepressant to help lift your spirits.
I would just like to wish you all the best and urge you to try not to give up. Your family needs you. Please tell your doctor everything so you can get the treatment you need. Keep visiting this forum for support and good advice and let us know how you are doing. You have a lovely baby there with you, that will help to give you the strength to carry on. Don't give up, life is worth living.
I agree with the sufferers who have replied to you. I have had Scleroderma for 22 years and have other problems besides. It is progressing and has now gone to the neuropaths in my legs and I lose my balance. I am 64 this year. I feel I have come this far, and frankly I feel I have the ethical and moral responsibility towards my Grandchildren who regard me highly and love me for who I am despite my physical limitations. I do not want them to feel bereft of me through my choosing. It would make them think I did not love them enough. So I carry on for them; and it is only right and proper that I do. Please seek more help through your GP or Hospital. You can get a long way these days with the right treatment. Be strong. Good Luck.
SRUKadminPartner
Really sorry to hear this. If you have any questions or if there is anything we can do at the RSA to help, please get in touch on 01270 872 776 or info@raynauds.org.uk There is a great community on here too who can provide a lot of support for you. Thank you.
I hope the helpful, loving replies you have had will help you through this horrid time. As others mentioned things have come a long way forward since the sad passing of your father. See your GP urgently.There is a lot of help and love out there for you.
My dad died from it as well at the age of 54 in 1958. Back then there was no info to go by such as what we have now the internet. He donated his body to the University of Kingston in Ontario Canada. I also have it going on 7 years I'm 63 now so I know what your going through.
I understand how every day can be such a struggle. I have a lot of tests coming up and trying very hard not to worry. Being optimistic and stress free is imperative for us. I see that beautiful baby in your arms. I have 8 grandchildren that I am determined to be around to see grow up. When I am over whelmed with worry, I turn to the Lord and exchange my negative thoughts to gratefulness for the wonderful things in my life. This is something I am learning to do. I am sure you feel the isolation as well. No one understands our disease and it can be very lonely. Thank God for my grandchildren to keep my body going. I pray for you to have a good day
Hi Vicmark, my father my best friend past 5 years ago. Like your father, my father is looking down on us. It gives us strength to fight the good fight.
What a beautiful baby you have. Mike and the Mechanics brought out a song some years ago entitled 'In the living years'.
When you look in your wonderful baby's eyes, you can see your father looking back at you.
If you ask your GP for a referral to a counsellor it may help.
God bless you, you have many friends.
I don't seem to b getting better worse if anything notice diff changes daily work gettin harder carnt sleep and am not a person to moan or ask for help carnt get in or out of bath hard to get on and of toilet when is it time to call it a day
