Nightwriter
New member
Hi,
To be in the hospital SIX times in one year, and not be able to work is a very good reason to be depressed. Maybe you think "why bother, I'm just going to get sick again." Plus your body and mind must be completely drained. Your illness is affecting you in every way.
I don't know anything else about your case, but I will bet what has put you in this horrible cycle is not being addressed medically. You have to figure what it is that is causing these exacerbations. What is the source? The exacerbations come from somewehere.
My doctor once told me that every person can be helped in some way. I urge you not to give up. Even if means seeking other opinions. I have searched and searched until I found help. I was treated by some quacks along the way until I found a doctor who set me on a healthier path. You can't do this alone. It is way too complicated.
I have had 3 or 4 extreme major crises and subsequent turning points in the course of this disease. Some people have remarked that I am so brave. I'm not brave at all. But I go into some survival mode in order to deal with the task at hand. To me coughing up tons of blood is the worst.
Of course at times I have felt utter dispair and abject fear. I want to let you know that if I can cope, so can you. You can give up or find your inner resources to fight like hell.
I once answered a post of yours talking about inflammation so I am not going to address that. But I will share a story that similar to yours (and I have been much worse than this)that was my most recent crisis.
The last turning point for me was in 2004. As the result of one of the fires in LA being in my neighborhood, I was exposed to a lot of smoke. I then had 5 very bad exacerbations in a year. My PFT's started dropping. And when my sensitivity to all drugs except one disappeared, I was truly terrified.
I was already doing strict asthma protective controls but with smoke exposure, my lungs were staying inflamed. I couldn't work. I couldn't exercise. I couldn't do much of anything.
But I asked myself: Am I doing every possible thing that I could do to help myself? How do I reduce the inflammation so I could get my airways open again, get the mucus out and stop this unrelenting cycle.
I was already doing so much and I had been stable since the late 90's after I met my doctor who had helped me so much.
.
So I kept reading articles on-line to try to find anything new that had some credible research behind it. Things that were being tested on people.Tis is what I found.
I added Tumeric Capsules (which is in Phase II testing) NAC, and Hypertonic Saline. I started taking Quercitin to block allergies, I got a charcoal mask to limit my exposures to fumes, and stayed away from groups of people during cold and flu season.
The infections stopped cold. And because I was able to stay off antibiotics, my sensitivities to every drug returned.
There really are things you can do, but I really don't much about your individual case, so I am just giving you just an idea of one of the ways of how I helped myself.
CF goes through cycles. And when it's bad, it's debilitating and demoralizing. I would be happy to pass on any information of other ways of how I helped myself.
If you empower yourself with knowledge and action, you will have the fortitude to push on instead of feeling helpless. This is a test you can pass.
To be in the hospital SIX times in one year, and not be able to work is a very good reason to be depressed. Maybe you think "why bother, I'm just going to get sick again." Plus your body and mind must be completely drained. Your illness is affecting you in every way.
I don't know anything else about your case, but I will bet what has put you in this horrible cycle is not being addressed medically. You have to figure what it is that is causing these exacerbations. What is the source? The exacerbations come from somewehere.
My doctor once told me that every person can be helped in some way. I urge you not to give up. Even if means seeking other opinions. I have searched and searched until I found help. I was treated by some quacks along the way until I found a doctor who set me on a healthier path. You can't do this alone. It is way too complicated.
I have had 3 or 4 extreme major crises and subsequent turning points in the course of this disease. Some people have remarked that I am so brave. I'm not brave at all. But I go into some survival mode in order to deal with the task at hand. To me coughing up tons of blood is the worst.
Of course at times I have felt utter dispair and abject fear. I want to let you know that if I can cope, so can you. You can give up or find your inner resources to fight like hell.
I once answered a post of yours talking about inflammation so I am not going to address that. But I will share a story that similar to yours (and I have been much worse than this)that was my most recent crisis.
The last turning point for me was in 2004. As the result of one of the fires in LA being in my neighborhood, I was exposed to a lot of smoke. I then had 5 very bad exacerbations in a year. My PFT's started dropping. And when my sensitivity to all drugs except one disappeared, I was truly terrified.
I was already doing strict asthma protective controls but with smoke exposure, my lungs were staying inflamed. I couldn't work. I couldn't exercise. I couldn't do much of anything.
But I asked myself: Am I doing every possible thing that I could do to help myself? How do I reduce the inflammation so I could get my airways open again, get the mucus out and stop this unrelenting cycle.
I was already doing so much and I had been stable since the late 90's after I met my doctor who had helped me so much.
.
So I kept reading articles on-line to try to find anything new that had some credible research behind it. Things that were being tested on people.Tis is what I found.
I added Tumeric Capsules (which is in Phase II testing) NAC, and Hypertonic Saline. I started taking Quercitin to block allergies, I got a charcoal mask to limit my exposures to fumes, and stayed away from groups of people during cold and flu season.
The infections stopped cold. And because I was able to stay off antibiotics, my sensitivities to every drug returned.
There really are things you can do, but I really don't much about your individual case, so I am just giving you just an idea of one of the ways of how I helped myself.
CF goes through cycles. And when it's bad, it's debilitating and demoralizing. I would be happy to pass on any information of other ways of how I helped myself.
If you empower yourself with knowledge and action, you will have the fortitude to push on instead of feeling helpless. This is a test you can pass.