Scared but not really

Haveing sclero sometimes scares me b/c I dont know whats going to happen. I been doing good for over a year now. No real issue. But lately I been feeling like sclero is about to try to act crazy. My father asked me today what was wrong with me. I cant tell him b/c I dont know. I want to tell him its sclero and all the things that I am worried about but him will either say im not sick anymore and that i need to stop blaming sclero or he will get worried about me. i am scared to even talk to him about sclero. he wants to believe thatit i take care of myself, everthing will be cool.... sorry but i believe prednisone is the only thing helping me. i can feel the changes since i been lowering the mg of prednisone. i am so happy for sites like this so i can talk to others like me. how do yall talk to yall friends and family about sclero? how do they handle it?

12 Replies

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  • It is indeed very difficult because sclero is so complicated, but you have to tell your father that it is chronic, it does not go away and put him in contact with the RSA. Or let him see this website.

  • ii have to agree,, i find it difficult to discuss with my family, but you have to let them know the pro and cons,, what can happen,, it is easier for them if they know in advance,, get some leaflets,, and give them to your dad

  • I tend not to discuss it much, not really. I have diffuse scleroderma - I'm scared, I can feel and see my body changing and the future is uncertain. Most people just think I have cold hands and that's that. It's a complicated condition and nobody has heard of it, so where do you start? I'm so glad I found this site, it really helps that we can support each other.

  • I agree totally. My body is changing - hurting but scared to say much as people will think I'm a hypochondriac. Good luck - isn't this cold weather a nightmare?

  • I have diffuse also with the CREST I know how you guys feel!!! I see and feel my body changing also. At least we have each other cause others do not understand... My family thinks I'm crazy and it's all in my head but I have days I can't move and I feel like a truck ran me over! We will all make it through this I just know it!! Stay strong and keep smiling!!

  • Even though I have various complications, and the Raynauds can be uncomfortable, some days are a bit more challenging than others, I make efforts to be positive. I am a rather regimented person and being determined to stay around positive people, positive atmospheres, and entertain myself with good reading, writing, listening to sounds, exercising, meditating, planning and cooking my meals, and looking forward to the day and having the best hopes for the next day . . . . all really helps to award me with a healthy balance. I'm only human too, and sometimes my emotions trigger to a little negativity from time to time, however, I make efforts to shorten and lessen the emotion battle by remembering there are many others who are much more challenged than I am, and I place myself back into check to realize just how blessed that I am. I visited with a friend yesterday at a nursing home - and she is the same age as I am, has been in the home for about 7 years now - limited with her mobility in a wheel chair and is so inspirational and thankful. She still likes to read, play bingo, participate in other activities that she can and has a high appreciation and awareness for her many blessings. - Sure I have Sclero (18th yr.), along w/Raynauds, and the various complications associated, however, I am determined to not let it take over my mind, I want to enjoy as much as I can as long as I am on earth for my own personal journey. These conditions I have does not mean that I will die with them, it could be something else - and I can't worry about what hasn't come. With intense medical conditions, it is absolutely essential to do all that we can do to stay refreshed, positive, hopeful and reject stressful situations and stressful/dramatic/non-undertsanding people and environments as much as possible. Stress and low self-esteem are major hinderances to healthy people and definitely ultimate declines for those more challenged like us. I encourage you to try your best at taking good care of yourself and placing enjoyment and keeping life as simple as possible - and having faith. I am a prayerful, spiritual practicing individual who strongly believes in GOD and the almighty powers HE holds and bestows more and more, with our seeking HIS miraculous touch. I have a good team of doctors, and I admire them, trust them and am grateful for their skills and their care. However, they are human, they could pass away tomorrow. My Creator stands forever and holds the divine powers that I am graced by - and no man can give me peace and a good night's sleep. It's awesome, it's wonderful and I pray that you will receive the abundant blessings that your heart desires. I am here for you.

  • Just one word of encouragement, I have diffuse scleroderma and raynauds and sjogrens. Many of the worst scleroderma symptoms resolved themselves after 5 years or so. i still have some issues, but livable issues. Each year or so, something new pops up, but I've learned to not panic and to find a way to adjust my life to live with it.

    Now, I know that everyone's level of severity with this disease is different. So I give you my best wishes and my hope that you will find a way around the fear. I had it too, for many years! Good luck!

  • sklero as been attackin me loads this last few months ie lungs legs fingers ect but no one understands this disease so i have to keep it to myself as when i say anythink my family think am playin on it its a horriblble disease i hate it i feelo like somthink is taking my body over i am starting to get depressed and keep forgetting everythink i feel like am 90 in a 39 yr old body its so unfair but we have to get on with it on are own hope ur ok tc huggs annmarie

  • hey i have systemic sclerosis which is the scleroderma that affects everything inside n out im 21 yrs old had it since i was 9 i have lost alot of toes to gangreen and i feel like im the only one that has had to go through chemo therapy and have to have my throat opened every week. i have R arthritits my hands r permenantly closed. thats not even the half of it. I have never been depressed GOD can make u have strength that u never thought was possible there is so many things that can b done to make u more comfortable. even goin thro all this i go to the gym and college. Dont b scared doctors r learning more and more about this disease

    everyday!!

    :)

  • Nowaysclero, you seemed to have difficulty not wanting to upset your father. You have not replied to my suggestion about putting your father in contact with the RSA. You seem to me to have more difficulty. Can you not speak to your father? How old are you? Talk to us we are your friends.

  • Im sorry, I didnt know you wanted a reply. I dont have any difficulty talking to my father. I dont want to hurt my father. When he knows that I am not well, he hurts. Why cause him that pain when I can deal with it. I wanted to know how others talk to their family when they are not feeling well.

    Are you saying not to talk to my father? Why would I not speak to my father? He nursed me when I could not do for myself. I dont believe in not speaking to family.

  • No, not at all. You must talk to your dad, the more you do the more he will get used to it. Years ago I had difficulty talking to my husband when I wasn't feeling well and needed comforting because I thought I would be boring. But I have completely recovered from that position. He now understands me better. I tell him things when he can do something about it so as not to make him feel helpless even when it's just a cuddle that I need.

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