Coping
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Patient and Caregiver Diaries
Patient Diary -- Linda Washburn
oldest to recent
Sunday, August 30, 2009
Haven't Posted in 2 Years
So much has happened in 2 years since I was diagnosed. I got on revatio and it worked for a year and a half and then I got worse. I then went on letairis and got better again. I actually went from stage 3 to stage 1 but Iam still tired all the time and have headaches. For years the Doctors thought I had sleep apnea but now they think I have narcolepsy. I had a gall bladder surgery and now have discovered I have several spots on my right lung. I have been fighting for 5 years for disability. My son is still alive and Iam so grateful for that. Right now Iam bearing the weight of several family members problems. My sister has a brain tumor now, and my other sister had a break down because she found out her husband was a child molester etc. , my 2 sons are on drugs, my dogs heart is enlarged and is having a hard time breathing. The refreshing part of my life is my disabled son that I have been caring for for 33 years and my precious daughter that became a school teacher, married a christian man and gave me a beautiful grandson. Since I was the oldest of 6 kids myself I have always been the mother to everyone and always the one to help everybody. I have finally decided I can't do it anymore. I can only control my life not others. I am on creative corner and got several emails that I didn't tell enough about my work. I mostly told about my life taking care of my son. However, I did get one email saying I was promoting my work as a sales pitch etc. This one shocked me as I only wrote 2 sentences instead of the whole page which is supposed to be about your art. It also shocked me that this person was from PH Central. Anyway, I can't let one person get to me as Iam going through so much right now. Sorry, Its been two years since I have written here. I will write a lot more often now. Linda
Haven't Posted in 2 Years
So much has happened in 2 years since I was diagnosed. I got on revatio and it worked for a year and a half and then I got worse. I then went on letairis and got better again. I actually went from stage 3 to stage 1 but Iam still tired all the time and have headaches. For years the Doctors thought I had sleep apnea but now they think I have narcolepsy. I had a gall bladder surgery and now have discovered I have several spots on my right lung. I have been fighting for 5 years for disability. My son is still alive and Iam so grateful for that. Right now Iam bearing the weight of several family members problems. My sister has a brain tumor now, and my other sister had a break down because she found out her husband was a child molester etc. , my 2 sons are on drugs, my dogs heart is enlarged and is having a hard time breathing. The refreshing part of my life is my disabled son that I have been caring for for 33 years and my precious daughter that became a school teacher, married a christian man and gave me a beautiful grandson. Since I was the oldest of 6 kids myself I have always been the mother to everyone and always the one to help everybody. I have finally decided I can't do it anymore. I can only control my life not others. I am on creative corner and got several emails that I didn't tell enough about my work. I mostly told about my life taking care of my son. However, I did get one email saying I was promoting my work as a sales pitch etc. This one shocked me as I only wrote 2 sentences instead of the whole page which is supposed to be about your art. It also shocked me that this person was from PH Central. Anyway, I can't let one person get to me as Iam going through so much right now. Sorry, Its been two years since I have written here. I will write a lot more often now. Linda
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Wednesday, September 09, 2009
Sleep Apnea and Narcolepsy
Well for years the Doctors have suspected that I have sleep apnea. Iam more confused now than ever as I have all the symtoms. I had the sleep study and the person that did it told me the Doctor would probably have me come back for another test wearing the cpap mask. Well, that sort of told me I had it but when I went to the Doctors he said I didn't have it. I keep having so many things happening to me that now he is sending me back for a narcolepsy test. I was back in the hospital again and found out I now have spots on my right lung too. Geepers if it isn't one thing its another. Well, I'm off now to sleep for 2 days at the lab. More later....
Sleep Apnea and Narcolepsy
Well for years the Doctors have suspected that I have sleep apnea. Iam more confused now than ever as I have all the symtoms. I had the sleep study and the person that did it told me the Doctor would probably have me come back for another test wearing the cpap mask. Well, that sort of told me I had it but when I went to the Doctors he said I didn't have it. I keep having so many things happening to me that now he is sending me back for a narcolepsy test. I was back in the hospital again and found out I now have spots on my right lung too. Geepers if it isn't one thing its another. Well, I'm off now to sleep for 2 days at the lab. More later....
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Tuesday, September 22, 2009
Losing the battle
I should be happy because both my son and I are still alive and I have so much to be grateful for but I got bad news yesterday and I woke up 7 times last night crying. After a long 5 year battle to get disabilty I got turned down again. This is pretty much the end of the line. I can appeal to the court of judges in Virginia but it would take years. After reading my denial several times trying to make some sense of it it basically says: I chose to take care of my son and not be gainfully employed all these years and because of not working Iam obese and I was sales clerk before so I can do that again. I was never a sales clerk in my life. What I was was honest and tried to support myself by selling crafts on ebay which bombed but never the less I turned it in as income. If my son dies I will be homeless and lose my house as that little $600 check a month of his is the only income we have. I knew I had lost the minute I went into the court room and the judge brought up past marriages of years ago. He was trying to make me out like a lazy bum getting married to be supported and living off my sons money. I chose to devote my life to taking care of my severely handicapped son not to live off his pitiful little money. I have been alone 50 years of my life without a husband. I wished I would have told the judge that but it wasn't supposed to be about what I did wrong years ago. I was so embarassed when he brought up my marriages years ago I didn't know what to say except that I was severely abused as a child and was in foster homes and I suppose I was looking for someone to love me not beat Elizabeth Taylors record. Well, I didn't say the part about Elizabeth Taylor. I have been completely alone with my son for the past 16 years and I live like a hermit. My car was stolen 3 years ago and I have so much to do with diapering, tube feeding and meds for my son and lifting him with a hoyer lift I barely have time for anything else. I have to wait 3 months to find out what the spots are on my lungs and wednesday maybe I will find out what happened with the 2nd sleep apnea test as they said I had several episodes of what they didn't say. My heart acts up every day so maybe that was it. Iam so lost right now and devastated.
Losing the battle
I should be happy because both my son and I are still alive and I have so much to be grateful for but I got bad news yesterday and I woke up 7 times last night crying. After a long 5 year battle to get disabilty I got turned down again. This is pretty much the end of the line. I can appeal to the court of judges in Virginia but it would take years. After reading my denial several times trying to make some sense of it it basically says: I chose to take care of my son and not be gainfully employed all these years and because of not working Iam obese and I was sales clerk before so I can do that again. I was never a sales clerk in my life. What I was was honest and tried to support myself by selling crafts on ebay which bombed but never the less I turned it in as income. If my son dies I will be homeless and lose my house as that little $600 check a month of his is the only income we have. I knew I had lost the minute I went into the court room and the judge brought up past marriages of years ago. He was trying to make me out like a lazy bum getting married to be supported and living off my sons money. I chose to devote my life to taking care of my severely handicapped son not to live off his pitiful little money. I have been alone 50 years of my life without a husband. I wished I would have told the judge that but it wasn't supposed to be about what I did wrong years ago. I was so embarassed when he brought up my marriages years ago I didn't know what to say except that I was severely abused as a child and was in foster homes and I suppose I was looking for someone to love me not beat Elizabeth Taylors record. Well, I didn't say the part about Elizabeth Taylor. I have been completely alone with my son for the past 16 years and I live like a hermit. My car was stolen 3 years ago and I have so much to do with diapering, tube feeding and meds for my son and lifting him with a hoyer lift I barely have time for anything else. I have to wait 3 months to find out what the spots are on my lungs and wednesday maybe I will find out what happened with the 2nd sleep apnea test as they said I had several episodes of what they didn't say. My heart acts up every day so maybe that was it. Iam so lost right now and devastated.
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Monday, October 19, 2009
Another Miracle
Another Miracle
Just got home after 4 long days of my son being in intensive care on a breathing machine. He is breathing on his own now and out of the woods and may even be moved to a regular room soon. There will be a lot of changes in his care when he gets home and I have no doubt I can do it as I have been taking care of him forr 33 years and fighting for both our lives. Now off to bed for some much needed rest.
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