sarcoid

i don't know how to accept this thing and move on no family

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Margie58,

I felt the same way. You have come to a great site with loving and caring people that help us get through all of this. I did alot of reading about the disease trying to understand it better so I could accept it...then I found this site and it has helped me the most! Just know that we are all here for you so we can battle this together.

Hugs!!!
Cindy

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you know i feel so confused about having this disease i have sarcoids and polymyositis- i dont know i have to look towards.... help me understand these 2 diseases

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Post all your questions, your treatments/meds so far, your dx and people here on this site with help with answers, support and encouragement. You are not alone.

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Hi Margie58,

You have taken the first step to accepting. Seeking help and understanding from others who will help and understand you.

Your one line plea was very powerful. I am 71, live in an area where all my family and friends live and have been told "if you want to breath better, and without oxygen supplement, you must move to a sea-level, or near sea-level area."

I seemed to accept this, and was even looking forward to the adventure, when a gut-level fear took over. Talking about my fear in this site has led me to make medical decisions.... going to the Cleveland Clinic.

Accepting this disease is similar to accepting death.
You seem to be in anger stage so....let it go....we will all accept and understand. carosu

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Margie58,
You can go on with us. We are your
family and friends. Just talk to us
anytime.
Grasshopper
(Gwen)

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thanks to all of u i guess u understand what it is all about huh .

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Hi! I'm a newcommer to the site, but already feel the love and concern that flows through the conversations. Each one helping one. I figure it took 10-12 years before a diagnosis was made. Symptoms I'm hearing about were symptoms that I had back then, but I was so glad to be alive, because I was diagnosed with cancer in 1988. 95% chance of reoccuring. Now I'm condsidered cured -- now another battle. My husband has said several times over the years that he wished they would just put me in the hospital until they could find out what was wrong with me. I'm also finding out that there are some myths floating around -- like if it goes in remission it won't go back. That your heart will become normal again. From doctors - It's just your nerves. You've been through worse. Nothing wrong with you - you are just not physically fit. I thank God for this support group and a loving husband, who I know hurts when I hurt. God bless and keep you strong. Great-gram

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I have family, but at times, they don't cope as well as expected, and I find myself feeling worse because of their efforts, or non-efforts. They are coping too, and sometimes we all cope differently and not so peacefully.

Some roads we walk alone to some extent. Each of us experiences our illness individually, that doesn't mean we live our lives alone. Family or not.

We can always seek support, and that support need not come from family. We can build a network of other Sarkies, friends with similar interests (just because we are sick, doesn't mean we don't retain remnants of who we were pre-diagnosis).

You may find solace in faith, and a church community.

You may find friends in a group that you share an interest with, just let them know you are ill and can't always provide service...most will accept you as a member and say, 'do your best'.

And, of course, there is this community, which seems one of the most healthy, balanced online forums dealing with disease.

Reach out. Don't be alone. Here is my hand.

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I too am new to all of this sarc stuff! It may not be of any consolation but many of us with or without family's or, like myself a significant other have found much of our support on this site. I have family but I don't think that they have gotten past the 'not looking sick' mentality to accept that the ups and downs are real. Please find myself and others as viable persons to bounce your woes off of. You are in my thoughts.

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Margie this is vicki jo you have family wity us at work i will be there for you if you let me

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I felt and still sometimes feel like that too. Until I had this I had never even heard of Sarcoidosis. The worst part is when your sick for so long and it seems like your never going to feel even close to healthy again. This place will help you more than I can express. There are no support groups in Western Massachusetts so finding this place has been a godsend. Just remember that everyone here understands and if you need support you will find it here. I can't tell you how to come to terms with this but I can tell you what I do and that is take it one day at a time. I remind myself that it could be worse and there are some who have suffered more than I can imagine. I try to be grateful for what I do have like being able to see and walk, because if I focus on why did I get this and all the symptoms I deal with on and off it just brings me down. If you need support, answers to questions or just a friend, I'm here and so are a lot of others.

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I moved away from family but with my cat I seem to be fortunate enough to pick up friends wherever I go THEY ARE DRAWN TOWARDS MY CAT IT IS AN ALIEN PLOT. Of course on my planet sarc is not allowed so I had to get it here silly earthlings. This site is excellent for help especially if you are not drawn to the insane drivel I write but we all have things that might help some of us have weird concoctions that have helped us that others have not used yet and others are just plain heroes. I am just plain nuts it's a terrible job but someone has to do it.

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thank u guys

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I am also new to this site and I have found it to be very comforting. I was diagnosed with pulmonary sarcoid a little over a year now. I have had 2 back surgeries and a total knee replacement. I now I am looking at possibly the other knee needing to be replaced. I am only 46 and I am so tired from being in pain all the time. I hear you when you say you take 3 days to recover. I work on my feet as well all day Mon.-Frid. and I am struggling with this. I am always so tired! OH WELL ! Life goes on!

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Be fighting this for about 18 yrs. And I have not accepted it yet. But support is so important. It will come.

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Just keep hanging in there margie, time passes and you figure it out as you go along. You're not alone, we have each other, even if it's over the internet, it feels like home to come here and hear the voices and share our strength, we'll be your family! C.J. aka CoCobread

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Hi, Margie. As so many others have said, you're never alone on this site. There have been so many times that I have found comfort here just from reading. My family and my boyfriend don't really know what to say or how to react, so when they ask me how I am, I always tell them that I am okay. It's just easier for me to do that than to tell them how I am really feeling. Most days, saying I am okay is pretty close to the truth, so when I am not quite being honest with them, I don't feel so guilty over it. Acceptance is hard, there are days I still feel like I am in denial, and I was diagnosed in September of 2009. I think that eventually it will be something that we come to grips with, and will deal with it and with people a little more effectively. Just remember to come to this site, the people here are fabulous. There are so many intelligent, knowledgeable people here. There are those that will make you laugh, those that are so supportive in so many ways, and those that are all of the above combined. Blessings to you as you begin to take this journey with us. Welcome to the family.

Angie

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Sarcoidosis and the Body
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.

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