Living with Sarcoidosis for as long as I can... - SarcoidosisUK

SarcoidosisUK

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Living with Sarcoidosis for as long as I can remember.

Talsam profile image
9 Replies

I was diagnosed April 1986 after a doctor looked at my xrays and told me my lungs look like they were full of paint. When my Daughter was born in Oct of 1972 I began getting sores in my mouth each month. My mouth was full of kanker sores. I couldn't eat, drink or talk it was so painfull. This happened every month for years.

Next, I kept having pain around the middle of my body. Sometimes it would go away for days then return with increasing pain. I almost died from a diseased gallbladder at age 22. No stones. While the surgeon was taking my gallbladder out they did some exploring of my liver and other organs. Never knew the result.

Once I was finally given a name for my disease Sarcoidosis. Had to practice spelling it. I had a bronscopopy of my lungs, a liver biopsy and told it's in both my lungs and liver.

Since then I have been in the hospital many times with pneumonia. I have been on and off steroids regularly. I got steroid induced cateracts almost over night in both eyes. I know my friends must think I binge eat cause my weight goes up and down. When I'm on the steroids for a while my face blows up like a balloon and all my wrinkles disapear.

I'm 64 years now and I still have Sarcoidosis. I moved to a lower elevation and feel better here. I needed oxygen at 6500 ft. I don't here were I live now.

I guess the one thing I did for myself was not give up on me. I am a real estate broker and have been for 28 years. I have my own company and have had 2 other companies I sold before real estate.

I grew up in a rather poor home and started working before I was out of grade school. I married my best friend out of high school and only went back to school for my real estate license.

It's a struggle some days but I keep hoping for a cure for those of you who are suffering. I have leaned so much more than any Dr has told me on sites like this one. I always wondered if all these other ailments were Sarcoidosis. I'm finding out they are and I am learning some important things I need to do and which vitamins I need.

I guess the one thing that was most frustrating was to convince friends and family I was sick with a disease that doesn't ever let me feel good some days. It's an auto immune disease and I catch colds very easy. Don't come over just cause you don't think you're contagious, stay away if you even cough once. If I catch a cold it might take me 3 months to be back to were I was when I caught the cold. The one person I can thank the most is my husband. He's helped me over the years with his love, understanding and help.

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Talsam profile image
Talsam
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9 Replies
Loneliness_50 profile image
Loneliness_50

Hi, sorry to hear your so ill!! What type of treatment are you on?? I also have sores in my mouth and some lung and nerve involment.

Talsam profile image
Talsam in reply to Loneliness_50

No special treatment. Just a rescue inhaler and a steroid inhaler. When I'm sick I start at 60 mg prednisone for a week then 50 a week down to 0 After 6 weeks.

JanJ profile image
JanJ

Hi.

I was wondering If the name Talsarn is from where you live (as there is a village called Talsarn near where I live in North Wales UK). just a thought.

I was diagnosed with Sarcoidosis about 12 years ago after xrays for another illness showed a lot of 'white paint like' - shadows on the lungs. Progression was very slow until 2 years ago but now moving on at a fast pace and on 24/7 oxygen at highest level. also receiving palliative care and in a wheelchair as cannot walk more than a few steps.

I would love to know what caused me to have Sarcoidosis but will probably never know. I had a Gastric Band fitted about 15 years ago and often wonder if there is any connection? But it could be anything.

My husband and I were also in business - B & B and Hotel but as my husband is also ill (cancer) and looks after me as best he can when he is not ill - we have sold up and moved to a house not too far from the main county Hospital.

It would be interesting to swap notes if you wanted to.

Jan

Talsam profile image
Talsam in reply to JanJ

Hi, it's my name. Tallsam, last first. I am so very sad to hear how bad you have been hit with Sarcoidosis. I would like to share our stories.

I have read that if your body gets a huge shock it can trigger an autoimmune disease.

I hope my message finds you feeling good today. Take care.

Sammi

Hi Talsam and Everyone else who has contributed. Sorry to hear of your struggles with sarcoidosis. SarcoidosisUK are here to support you in whatever ways we can. For instance we run support group, have a Nurse Helpline and information leaflets. Please find more information on these services and more on our website here: sarcoidosisuk.org and get in touch. Best wishes, Jack, SarcoidosisUK

Denram profile image
Denram

Hi Talsam. Pleased to "meet you". I was diagnosed back in 1996 and was told I needed 80mg Prednisolone to sort it all out. I am still on the tablets and down to 10mg. No sign of getting of them now. I to am 64 and basically retired early due to lack of understanding at work. By this I mean I took redundancy packages (in both cases) from the first job after 38 years as they want me to travel to a unsuitable location despite nearer sites. The second because I "was not meeting targets". Pleased to say results fell after I left !!.

I manage my condition by telling everyone my condition and the reasons behind my requests. This I find helps once people understand why I ask. I won't let it stop me doing too much just that I do it a bit slower or take just a little longer to complete because I have a breather.

Hope all remains good with you and all the very best.

DenRam

Talsam profile image
Talsam

Den Ram,

I am happy to hear you are doing better. Sarc is a life altering disease, that's for sure. I am on 30 mg of steroids due to a cold I caught. I hope you have an energy filled day.

Talsam profile image
Talsam

I had another bad cold and went back on steroids. It takes me about 3 months to recover from a bad cold. I try to stay away from crowds of people but I think that's were I caught this last cold from. I tell my family and friends to stay away if they are sick but some just don't understand how easy I catch colds. Thank you for the energy filled day. I hope your day is filled with energy too.

VeronicaLewis81 profile image
VeronicaLewis81

This was very helpful and encouraging information, thank you.

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