Let's introduce ourselves again

[Guest guest]

Hi everybody,

I think Jo brought up a really excellent point about new members trying to get to know us. Many of us have been on the board for a long time and we know each other pretty well. I remember when I first joined in the summer of 06 I was so encouraged by the information that was shared and how much I learned from hearing others stories.

It might help some of our newer members to hear (maybe in readers digest format lol) our individual stories and how we cope with our problems on a daily basis.

At the risk of boring you all to tears here's the short version of my story:

I was diagnosed in June of 2006 though my symptoms began about 18 months earlier. Shortness of breath and a chronic cough, fatigue and a itchy miserable rash on my hands. I was mis-diagnosed and treated for asthma and bronchitis for my respiratory symptoms and eczema was diagnosed for the rash on my hands. In the weeks leading up to Memorial Day 2006 I got progressively worse. I was under a tremendous amount of stress at work and at home. My then nearly 21 year old son was having serious problems with drugs and alcohol, he had bottomed out just before Mothers Day in May and I had taken him down to NC from NY to enter a treatment program. As soon as I got home I went downhill fast over the next two weeks. By Memorial Day my legs and feet had swollen and my heart and lungs were laboring to keep my alive. My sister called 911 on 5/26/06 at about 8pm. When the paramedics arrived my sats were in the mid-70's and my

heart rate was galloping along at 140. I didn't know it at the time but they told my family that night that they didn't know if I'd live through the night. Guess what? I did! I was diagnosed with pulmonary fibrosis and congestive heart failure. I was in the hospital for nearly 3 weeks, the majority of that time in the medical and then after my biopsy the surgical icu's. I was on very high doses of prednisone in the hospital, which likely saved my life. I went home on prednisone and a boatload of other medications along with supplementary oxygen 24/7. I was one month shy of my 47th birthday.

Since then I've gradually, in baby steps adjusted to living with this disease. My diagnosis has been refined to fibrotic NSIP which has a longer life expectancy than IPF but I don't pay a whole lot of attention to that these days. I've also added a diagnosis of undifferentiated connective tissue disease which is an auto-immune condition (which is the explanation for my hand rash). I went to pulmonary rehab and found the importance of exercising (carefully and minding my O2 levels but I actually feel better when I exercise).

I was forced to stop working and applied for Social Security Disability. I was approved in only a few months. I also had to give up living on my own as I can't afford it. My elderly parents and I now share a home in Durham NC, very close to Duke. I try to eat well, exercise and keep myself busy. I try to find ways to make a contribution and help other people. Focusing on other people is my best insurance against feeling too sorry for myself.

The single best practical help I got from this board was back in that first summer. I had been told at rehab to get a shower chair. I was horrified and somehow insulted. I was 47 years old! I didn't need a shower chair. When I posted about it on the board, Peggy, Sher and others encouraged me to go ahead and get one and save my energy for doing other things. Why use up all my energy struggling to take a shower? Hmmmm that made sense didn't it? It's a small thing but alot of those little practical tips can make a huge quality of life difference!

Hope that's the kind of thing you were looking for Jo. Please feel free to ask any questions....nothing is really too personal. We're all in this together!

Beth-Moderator

Fibrotic NSIP 06/06 UCTD 06/08

[Guest guest]

Your history telling was valuable, Beth. I would like to share mine, Jo, and look foward to you sharing yours. But, here in land, it's dinner time and I have to start dinner. Please know my history will be forth coming and anything I can answer, I will. I look foward to helping in any way possible. In some ways, Jo, I'm in the same boat as you.

Changing the subject, Bruce, I will assert myself and get my needs met with my doctor. It's the insurance I'm worried about. NSIPMarch 05land

Let's introduce ourselves again

Hi everybody,

I think Jo brought up a really excellent point about new members trying to get to know us. Many of us have been on the board for a long time and we know each other pretty well. I remember when I first joined in the summer of 06 I was so encouraged by the information that was shared and how much I learned from hearing others stories.

It might help some of our newer members to hear (maybe in readers digest format lol) our individual stories and how we cope with our problems on a daily basis.

At the risk of boring you all to tears here's the short version of my story:

I was diagnosed in June of 2006 though my symptoms began about 18 months earlier. Shortness of breath and a chronic cough, fatigue and a itchy miserable rash on my hands. I was mis-diagnosed and treated for asthma and bronchitis for my respiratory symptoms and eczema was diagnosed for the rash on my hands. In the weeks leading up to Memorial Day 2006 I got progressively worse. I was under a tremendous amount of stress at work and at home. My then nearly 21 year old son was having serious problems with drugs and alcohol, he had bottomed out just before Mothers Day in May and I had taken him down to NC from NY to enter a treatment program. As soon as I got home I went downhill fast over the next two weeks. By Memorial Day my legs and feet had swollen and my heart and lungs were laboring to keep my alive. My sister called 911 on 5/26/06 at about 8pm. When the paramedics arrived my sats were in the mid-70's and my

heart rate was galloping along at 140. I didn't know it at the time but they told my family that night that they didn't know if I'd live through the night. Guess what? I did! I was diagnosed with pulmonary fibrosis and congestive heart failure. I was in the hospital for nearly 3 weeks, the majority of that time in the medical and then after my biopsy the surgical icu's. I was on very high doses of prednisone in the hospital, which likely saved my life. I went home on prednisone and a boatload of other medications along with supplementary oxygen 24/7. I was one month shy of my 47th birthday.

Since then I've gradually, in baby steps adjusted to living with this disease. My diagnosis has been refined to fibrotic NSIP which has a longer life expectancy than IPF but I don't pay a whole lot of attention to that these days. I've also added a diagnosis of undifferentiated connective tissue disease which is an auto-immune condition (which is the explanation for my hand rash). I went to pulmonary rehab and found the importance of exercising (carefully and minding my O2 levels but I actually feel better when I exercise).

I was forced to stop working and applied for Social Security Disability. I was approved in only a few months. I also had to give up living on my own as I can't afford it. My elderly parents and I now share a home in Durham NC, very close to Duke. I try to eat well, exercise and keep myself busy. I try to find ways to make a contribution and help other people. Focusing on other people is my best insurance against feeling too sorry for myself.

The single best practical help I got from this board was back in that first summer.. I had been told at rehab to get a shower chair. I was horrified and somehow insulted. I was 47 years old! I didn't need a shower chair. When I posted about it on the board, Peggy, Sher and others encouraged me to go ahead and get one and save my energy for doing other things. Why use up all my energy struggling to take a shower? Hmmmm that made sense didn't it? It's a small thing but alot of those little practical tips can make a huge quality of life difference!

Hope that's the kind of thing you were looking for Jo. Please feel free to ask any questions... .nothing is really too personal. We're all in this together!

Beth-Moderator

Fibrotic NSIP 06/06 UCTD 06/08