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You don't have to give your screen name or e-mail here., Just list the things you like to do, or are limited to because of Sarcoidosis. Tell us how you spend time and what a typical day is like, you may do this anonimously if you'd like, Luiggie.
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hi my name is barbara and I have had sarcoid since 1998. The things I like to do are to read when my sugars are not to high, I watch some tv and when my hands allow me I do a little crocheting. Most of the time I am very weak, full of water and wheel chair bound. I miss walking and what I really miss is smelling things, my sense of smell and taste are gone, every once in a while I can taste some food but most of the time, I just remember how it used to taste. I really miss the smell of things, like flowers, perfume, bar b que pies and cakes.
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I miss walking long distances, I miss lifting whatever I want, I miss standing up without help, I miss my fingers bending and moving properly, I missthe white's of my eyes not being white, I miss working in my yard, climbing mountains, playing sports with my boys, I miss enjoying the cold weather and snow, I miss my other life... the pre-sarc life.
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I love to spend time with my grandchildren, having sleepovers and going to the cabin. I garden and can my produce. I enjoy friends and family. I get tired but I won't quit. I'm in the process of digging up my front lawn and making gardens. Why should I pay taxes on a green expanse of weed free grass when I could grow vegetable, flowers and herbs and have an inviting place to sit and relax. And I live in a side by side duplex in a sub-division. I need to keep busy and keep my mind off my problems.
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I like to spend time with my daughter who is differently abled. She is a delight and keeps me focused on the day at hand. I hate being so tired all the time but I still make myself have time for her..
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I miss going to bars. I was never a drunk or anything like that, but I did like the atmosphere of bars. I miss going out to visit my friends and justhanging out. I miss going out and walking, as I'm now on a wheel chair most of the time. I miss breathing regular air , instead of this portable oxygen. I miss going to the store, throwing out the garbage and going to the theater. I miss being able to do things around the house, I miss the person I used to be.
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I like to write to all other sarcoid pals and share all the information possible. I like to be a part of this group and not feel like a freak in theworld. I like knowing its okay to hurt and its real. I like to chat with friends.
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I like to sleep, to have uninterupted sleep for long periods of time... I like to hold my cat like a baby and tell her she is so beautiful, I smell in her fur and it comforts my pain...I like to watch TV and I don't care if my mind goes to mush from it all...I like to hear the sound of geese flying south in the fall...I like to eat...I like that someone will care enough to read what I like.
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I like my job and I am a very active person. I can't go to work now and I am no longer active. I am limited to siting on the coach and watching TV or I cough and get shortness of breath.
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I still love to spend time with my family and friends, I love spending time with my pets. Reading, writing, all forms of art. These are all things I can still do and enjoy. The things I miss are going out more with my friends clubs & listening to bands, spending a lot of time with nature, horseback riding, dancing, shopping, I also miss my adventure seeking self. I went sky diving, level 5 white water rafting and a few things I can't mention. Believe it or not I miss working, having a job. I am on disabilty and have tried working part-time and volunteering several times, but I always get so sick I am forced to stop. I miss having a schedule, a purpose each day. These are the things I look forward to one day doing again. Monique (toribecca)
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I like to be with friends and family. To sit on a bail of hay and see the cows eating and smell the sweetness of them as the sun goes down. I wish I were able to work. I wish I had energy to do things. Seems anymoer that even "fun" things" are a chore because I have zero energy. It is hard to have fun when you are struggling just to stay sitting up and hurt all the time. I love my great neice and nephew, just hearing them laugh can brighten any day. And I am so happy to have a place like this to come and share my woes and my joys.
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I miss my horses, the smell of the barn with hay and grain. I miss packing into the back country. I miss being in the sun. I miss the feeling of being free when riding my horses. They were my buddies one for over 10 years of riding and trust in the hills. I finally am able to turn my ache into admiring others while they are learning to ride, and suggesting ways to deal with the horses. I miss running, jogging, bike riding. I miss rafting and being in the sun. I think we are going to raft next year again I just have to be covered up and we will let someone else to the rafting hard parts. I want to get in the water rafting again! I miss not being able to shop all day while walking. Now I use a wheel chair to carry me and the oxygen. I am happy I can get out even if I do need a chair for long days! I thank the Lord for my good days and deal with the hard ones. I know the good Lord has plans for me, I just don't know what they are yet. I love to quilt. I have more time for quilting now, darn, no more excuses about not being able to finish a quilt. I love the abilities I do have and pray that I will always have the strength to adapt to new struggles. Even with the sarc problems I am grateful to wake up each day with a stronger will to succeed and conquer the challanges I have. I am grateful for the friends I have met on the Sarcoid connection and the information all are willing to share. Thank you
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I like to watch tv, go to the library and read magazines and try cooking new things. I have not worked fulltime since 2003. I am really disappointed that I am not feeling up to doing what I chose to do( accounting). I get tired very easily and suffer a great deal of pain most of the time. From stomachache, headaches, backaches and many other symptoms I am pretty much limited in what I get to do but I am trying to enjoy life. I get to notice a lot more things about the world and for the most part I am content with what life has thrown my way. At least I'm still her. Family is very important to me and without them I don't know where I would be. You know who cares for you when you are down.
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hi my name is robin and i have sarcoidosis since 1999. what i enjoy now is being able to share my activities with you all. The most important activty i enjoy is spending time with my children and grand children. I take the time to learn new receipt from dasiy kitchen and incorporate in to my kitchen. I like to crochet and do arts and crafts to create new things. Since i can't travel by train. My friend takes out to do garage sale shopping which i find to be fun. Don't get me wrong i do get tired. But i push my self to keep sane from letting my desease from taking over me. Every now and then i get a chance to go up to the mountain because that where i would love to be.
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