Too young to die

[Dorothy1221]

I've got less than a year to live I've been puking for days in the hospital still going on 6 months I'm desperate to getting well its so gross my puke is dark brown and body not absorbing any nutreants what shroud I be doing or what should I be taking medicine wise

[SherrySanford65]

Dorothy, first I would tell you that I have systemic scleroderma, pulmonary hypertension, and inactive lymphoma. I’m 65 years old. I just recently went into full blown scleroderma as I have had CREST for many years. I’ve been doing the puking thing for a long time now, but I’ve found that cannabis edibles keeps me eating even though I’m challenged most every day with ongoing symptoms. I was supposed to die three different times in my life. I’ll go when Jesus takes me home ! Don’t give up! Use any option that might be available to you. Try and learn to respond to stress in a healthier manner. Stress is a killer for people like us. God Bless you, Dorothy!

[Dorothy1221 in reply to SherrySanford65]

Thank you so much and I will try and read up on anything else that can help me I've been diagnosed scleraderma for two years not knowing I've had it for 4 years I'm tired and I need to know what I should and should not be doing to stay alive longer

[Hidden in reply to Dorothy1221]

What causes the vomiting?

[SherrySanford65 in reply to Hidden]

Scleroderma attack’s your GI system. Pt’s have severe reflux where acid is constantly backing up into the esophagus as the esophagus is not able to close all the way. This causes terrible heartburn and sometimes nausea.

[Hidden in reply to SherrySanford65]

Yeah, I know that - I have it I just meant the vomiting - I have gastroparesis too and wondered whether this is what is going on here?

[tanya1981 in reply to Dorothy1221]

Dorothy, just keep reading and writing in this forum...try as much as possible to stay calm and positive and let the phase pass....you are not dieing.....Sootie’s story below is absolutely amazing and I hope you draw courage and inspiration from it...and perhaps some ideas as well

[SherrySanford65 in reply to SherrySanford65]

Dorothy, don’t let any doctor tell you how long you have you have to live. I was told when I was 35 years old that I had about eight years to live. I am 65 years old. I will go when Jesus calls me home. Don’t listen to them. Keep a positive attitude.

[Dorothy1221]

What is full blown scleraderma I think I'm there too everything is messed up inside and I'm only 32

[Sootie1 in reply to Dorothy1221]

I waited for death some 6 months, bedridden, too weak to hold my head upright, 2 young children, *1982 , *1985, and a husband working abroad. Сlose family living on a different continent. Then the rate of progression slowed down and a remission began. 22 years later I am alive and well, stable, swimm an hour every day and do gardening. I know this sounds remote to you but spontaneous remission is not unusual. Strangly, I did not become depressed despite a family history of bipolar disorder. I built a wall around me by becoming a distant observer of a patient. I thought of me in the 3rd person. I was the doctor and the psychologist watching her, the patient. Total detachment. I had vasospasms in my legs, screamed to hell from pain. Opiod patches helped so the worst pain could be controlled but there were other problems; ulcers, muscular pain and weakness, dyspnea, oversensitivity to everything. Food had no taste. Somehow we overcome. You will also overcome. You will be immunosupressed and your aggressive T cells will calm down.

Big hug

[LilaJoe in reply to Sootie1]

Hi Sootie

Yours is an amazing story of hope

Could l ask Which medications helped you?Hydroxychoroquine is suggested for me- l have uctd moving quite quickly and affecting eating, daily living, exercise etc

Hi Dorothy,

I am so sorry to hear your distress, there are so many stories here of people healing, and l hope that can happen for you, and you'll be home with helpful medication soon.

[Sootie1 in reply to LilaJoe]

I was on cyclophosphamide for 5 months, plus steroids, then, after a severe cystits changed to azathioprine plus steroids for 5 years.

Have not have any progression since 2001. My DLCO is stable at ca 60-65%.

You are my daughter's age ..💖💖💖💖💖💖💖💖💖💖💖

[LilaJoe in reply to Sootie1]

Thank you! It is an inspiration to hear of your healing, so very glad for you,!!!!👍

It motivates me to keep on hunting for my own route back to health!

[SherrySanford65 in reply to Dorothy1221]

Full blown scleroderma is when you go from CREST syndrome into full scleroderma. It will show up in a special test they can do where it will have a second indicator aside from the positive centromere of sorts showing up that wasn’t there before at the first diagnosis.

[cleoshome]

Are they giving you IV Zofran, or Compazine. Will stop the vomiting. I'm sorry this is happening to you.

[cowhide]

Sorry to hear of your problems Dorothy, as you say, you are too young to die but I am sure they will be able to help you. Can't get the link to work directly, but if you scroll down to Michael Corbett's story at the 2017 SRUK conference, it shows how one inspirational man was able to carry on even though his digestive system was no longer co-operating with his will to live an active and full life.

youtube.com/playlist?list=P...

[Printmaker]

Hello

Here is a video which may give you hope.

drpompa.com/additional-reso...

[Printmaker]

If the above link won't work put in Dr Pompa, Dale' story,scleroderma

[kimmo]

Hi. I'm not sure if this will help you but I hope it may give you some hope. Seven years ago I collapsed at home and was rushed to hospital with what was considered an 'open bowel'. My scleroderma had diffused 12 months prior to this. I had suffered gastro problems for years though. The scleroderma 'masked' all symptoms during several scans. I had surgery and my partner was told 3 times I wouldn't survive. I lost my colon and large intestine and woke up 5 days later in ICU with an ileostomy. Scleroderma is a the condition that just keeps on giving but as long as we have the passion and courage to want to live, we can continue our daily fight against it. I pray that you will find your inner strength and have the rest of your life to look forward to. X

[yay4Jesus]

Bless your heart! Lifting you up to Jesus for healing, wisdom, comfort and peace. 🙏

[AMDP]

My heart goes out to you. Focus on the good stuff. Although you may or may not die when they say you will, you can make your last months worth living.

Sorry but I personally don't believe in god so can give you no such platitudes all I can say is good luck and try to keep positive for however long you have left be it six months or 60 years.

Sending love xx