Type Your Title Here
This page was last updated on: December 20, 2012
SARCOIDOSIS CHAT BUDDIES
"Suesue18"
Me and my daughter, Ciara, 6 years old. I was diagnosed June 27th 2001. I have only a few symptoms short of breath,cough,and sometimes am so tired I sleep for days. But I feel blessed. At least it wasn't cancer. I have a wonderful support group including the friends I have made in the Sarcoidbuddies chat. God bless us all. And remember "God's Love for us cannot be measured by the degree of our health."
"Bobbie25"
Hi I'm Bobbie, I've had Sarc. for 29 years. This picture shows me about 50 to 60 pounds overweight, due to Prednisone and lack of exercise. I love the water, here I'm on a houseboat in the Trinity Alps. What fun.
"Sandra"
My name is Sandra I live in West Palm Beach, Florida. I have had sarcoid for 3 years. I work in the field of medical research. My faith in god is what keeps me going and being positive .
"Steve"
My name is Steve Platten I am 49 years old.I live in Huddersfield, England, and am a freelance photographer by trade. I was diagnosed with sarcoidosis in January - 01, at the Huddersfield Royal Infirmary after being taken ill when my legs and ankles were very badly swollen with big red blisters on my shins and knees. Its now seven months later and I'm still suffering shortage of breath, lacking my usual energy and get up and go. Still taking prednisolone tablets 5mg one a day at the moment. Had the lung biopsy three months ago and have just had a CT scan awaiting the results. Hoping every thing is going to get better soon. My hobbies are playing the cornet in Yorkshire Brass Bands.but had to stop playing due to the breathing problem, I'm hoping to carry on playing one day
with the encouragement of the doctor at the Huddersfield Hospital. At the moment Conducting the Linthwaite Band in Huddersfield but find I have to sit on a stool and conduct as my legs give way every now and again. Enclosed a picture of me and my partner Victoria on holiday in Thailand.
Wishing every body well for the future.
Steve & Victoria,
"Dot Dot"
Hi guys, I am finally trying to send my picture of my husband, Bruce, and myself. This was taken a few years ago but it is about the best. I have had sarcoidosis for 38 years and there have been times when I didn't know what I was going to do. The good Lord led me to the chat group and it helps more than anyone can realize. Even though it has been a lot of years I have dealt with almost all of the symtoms of Sarcoid. At one time when I finally went out on disability I was sent to Duke for a diagnosis. lol. I was diagnosed in l965(I think) and the people at Duke didn't take my word or the word from the doctors from MUSC university in Charleston. Well, They finally had to admit that I did have it and it was active and my health went down hill fast this time. I was finally put on oxygen and only allowed on my feet for 10 minutes each hour. Thank God for two good sons. One took one part of the house and the other one took the other part. The one that took the washing actually earned some money when he joined the Navy by helping with clothes and the other one all of his washing turned green. lol I was put on a grant at Duke for four years and they studied me those years and I finally was able to meet others who had this mystery disease. Just one other short note that I try to remember was when I left MUSC in l965 they told me they knew one man that had lived 20 years with it but forgot to tell me how that man had lived those 20 years. As of now I am not on any pred. but am on others that the pred has effected such as nerves, pain and things of that nature. I have also been diagnosed with Fibro last August. My doctor says I am doing good so I try to take each day as it comes and look for something positive to come out of it.
My husband's parents are living with us now as they are both in ill health and we try to help them as best as we can. Thank God for home health. They are all concerned about my health going down so they keep giving me a day off now and again. I will have to think long and hard before I take any more prednisone. I had every side effect of the pred. that was known and I didn't have a life and neither did my family. God has been good to me. I have a wonderful husband and two grown sons married and I have one blood grandaughter and 1step grandaughter and 2 step grandsons. My grandaughter turned 12 this year and I have missed a lot of time that I wished I could have had more time with her.
"Steven R. Huber"
im a male, single and 42 years old and have been having sarc related problems since birth. the docs didnt diagnose this until i went into the hospital last year due to the results of tia's . used to enjoyed bowling and had my average up to around 180 and it took a long time to do this. unfortunately i can only manage a slow and methodical game of bowling due to leg problems. the cats name is frankie and i found her abandoned when she was just a couple of weeks old. thought she was a male cat and called her frank from a frank sinatra movie i was watching at the time. she is now 9 years old and quite frisky. she has her own chair to claw and sleep on. i do believe she has me beat on who sleeps the longest. the pic is when i just woke up and my great friend mike caught me offgaurd. as you can see frankie likes to sleep with someone like me. maybe she feels sorry for how ugly i look at times. shes now sleeping behind me in the bed as i write this to you all. if you need more go ahead and send me email and i will try to add more info thanks.
Your Sarc Friend
Steve
Young Steve Recent Picture
