Guest guest Posted August 12, 2009 Report Share Posted August 12, 2009 Dear Bruce,I'm basically a lurker, but occasionally post. Thank you so much for all the information you provide. I've learned so much from this support group. I was just talking to my daughter-in-law about how we really need to take the bull by the horns when it comes to our health. Thanks everyone for all the bits and pieces of your lives you share. It really does help.Sincerely, PJ from OH, 54, IPF '09, Sjogren's '95 Counseling There are certain things I find myself crusading a bit for. One isoximeters. Another is getting to an ILD center and the best doctor youcan. Another is insisting on what you need from your oxygen provider.But one that I want to remind everyone of today is mental healthcounseling.I owe my life and the quality of it to my counselor. I went through farworse than PF when dealing with depression, anxiety, and more. Lifewasn't worth living to me. But by the time I was diagnosed I was in abetter state. So, to me, I can honestly say about the PF that I've beenthrough worse.We have a terminal illness, whatever you take that to mean. But its aharsh thing to hear. I would expect it to be depressing and causeanxiety on nearly everyone. As you progress, as you take meds that playwith your mood, it can get worse. Ultimately depending on the form ofour ILD we may not be able to beat the physical disease, certainly notreverse the damage, and often not stop the progression. I personallyknow my life expectation is short although I can hear Peggy nowreminding that we don't have expiration dates stamped on our behinds. Ihaven't checked with a mirror so maybe she's right. But what can behelped is our dealing with the disease. The forums I belong to have beeninvaluable. I've learned how to live with it and make the most of it.But, I still and always will see my counselor and I know she'll be therewhen things are worse and on those days and times I need her most andshe already knows me so well. We talk about doctors and who is mostimportant. Well, a good mental health counselor may be the mostimportant one we could have on this path.Now its not right for everyone. Some can make it with family support. Icouldn't. Most can't. Most need more. If you feel your depression takingover your life or your anxiety. If you ever have suicidal thoughts (andyes, wishing you were dead even if you'd do nothing to cause it isclinically still a suicidal thought). Get help. It can do wonders.Please don't feel that you should be able to handle it without or itssome character weakness to reach out and seek assistance. We'resometimes a form of group therapy here but private individual can stilldo wonders. You may also need medications, whether anti-depressants oranti-anxiety. I personally feel everyone told they have such a diseaseshould be given a referral right then to a counselor. Certainly Ibelieve it also as something to accompany a prednisone prescription.There is nothing wrong with being depressed or angry or feeling hopelessabout this disease. But, you can take action to feel better. It'spossible. Take it from someone who in 2005-2006 had no will to live butwho now with a terminal disease, with oxygen, with something like 19conditions or issues, with 17 doctors last year and 14 or 15 this yearenjoys life and wants to make the most of it as long as it continues. Itchanged my life. These are the best years of my life.End of sermon. lol. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2009 Report Share Posted August 12, 2009 Bruce, I have to agree with you on this one. Back a couple of years ago when I was on prednisone I had to be on Zoloft for about a year. The mood swings from the prednisone were just too much for me to handle. I've been off the pred for well over 2 years now and I'm no longer on any anti-depressant. All that mood swing stuff is gone but the reality of living with a 'terminal' diagnosis remains. I also share a home with my elderly parents. My Dad is an alcoholic and I'm going through menopause. I decided back at the beginning of this year that I would either see a counselor or call a contractor and have my bedroom padded. LOL I found someone at Duke Integrative Medicine and see her twice a month. Anyone who's on Medicare please know that this is something that Medicare will pay for. Between Medicare and my supplement it's not costing me a penny. I would just encourage anyone who's feeling alone and helpless and/or hopeless to find someone to talk to, someone who will listen. If you don't know how to go about finding someone ask your doctor or ask your pastor or the local senior center might have a referral. It's worth the effort, it can make a huge difference. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Wednesday, August 12, 2009 7:11:23 PMSubject: Counseling There are certain things I find myself crusading a bit for. One isoximeters. Another is getting to an ILD center and the best doctor youcan. Another is insisting on what you need from your oxygen provider.But one that I want to remind everyone of today is mental healthcounseling.I owe my life and the quality of it to my counselor. I went through farworse than PF when dealing with depression, anxiety, and more. Lifewasn't worth living to me. But by the time I was diagnosed I was in abetter state. So, to me, I can honestly say about the PF that I've beenthrough worse.We have a terminal illness, whatever you take that to mean. But its aharsh thing to hear. I would expect it to be depressing and causeanxiety on nearly everyone. As you progress, as you take meds that playwith your mood, it can get worse. Ultimately depending on the form ofour ILD we may not be able to beat the physical disease, certainly notreverse the damage, and often not stop the progression. I personallyknow my life expectation is short although I can hear Peggy nowreminding that we don't have expiration dates stamped on our behinds. Ihaven't checked with a mirror so maybe she's right. But what can behelped is our dealing with the disease. The forums I belong to have beeninvaluable. I've learned how to live with it and make the most of it.But, I still and always will see my counselor and I know she'll be therewhen things are worse and on those days and times I need her most andshe already knows me so well. We talk about doctors and who is mostimportant. Well, a good mental health counselor may be the mostimportant one we could have on this path.Now its not right for everyone. Some can make it with family support. Icouldn't. Most can't. Most need more. If you feel your depression takingover your life or your anxiety. If you ever have suicidal thoughts (andyes, wishing you were dead even if you'd do nothing to cause it isclinically still a suicidal thought). Get help. It can do wonders.Please don't feel that you should be able to handle it without or itssome character weakness to reach out and seek assistance. We'resometimes a form of group therapy here but private individual can stilldo wonders. You may also need medications, whether anti-depressants oranti-anxiety. I personally feel everyone told they have such a diseaseshould be given a referral right then to a counselor. Certainly Ibelieve it also as something to accompany a prednisone prescription.There is nothing wrong with being depressed or angry or feeling hopelessabout this disease. But, you can take action to feel better. It'spossible. Take it from someone who in 2005-2006 had no will to live butwho now with a terminal disease, with oxygen, with something like 19conditions or issues, with 17 doctors last year and 14 or 15 this yearenjoys life and wants to make the most of it as long as it continues. Itchanged my life. These are the best years of my life.End of sermon. lol. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2009 Report Share Posted August 12, 2009 Bruce, Something I had to work through with depression was the idea of realizing that, just like a ship turning around, the mind doesn't change direction quickly at all. I never did see the light at the end of the tunnel until I was through it and looking back. When I was down, I told someone that I would rather be ill with almost anything else than having to deal with a mind that couldn't cope as it should. Not being too proud and being patient with yourself while seeking help can go a long way in bringing out the real you.Who believes that hard times help us appreciate the good times even more. Subject: CounselingTo: Breathe-Support Date: Wednesday, August 12, 2009, 11:11 PM There are certain things I find myself crusading a bit for. One isoximeters. Another is getting to an ILD center and the best doctor youcan. Another is insisting on what you need from your oxygen provider.But one that I want to remind everyone of today is mental healthcounseling.I owe my life and the quality of it to my counselor. I went through farworse than PF when dealing with depression, anxiety, and more. Lifewasn't worth living to me. But by the time I was diagnosed I was in abetter state. So, to me, I can honestly say about the PF that I've beenthrough worse.We have a terminal illness, whatever you take that to mean. But its aharsh thing to hear. I would expect it to be depressing and causeanxiety on nearly everyone. As you progress, as you take meds that playwith your mood, it can get worse. Ultimately depending on the form ofour ILD we may not be able to beat the physical disease, certainly notreverse the damage, and often not stop the progression. I personallyknow my life expectation is short although I can hear Peggy nowreminding that we don't have expiration dates stamped on our behinds. Ihaven't checked with a mirror so maybe she's right. But what can behelped is our dealing with the disease. The forums I belong to have beeninvaluable. I've learned how to live with it and make the most of it.But, I still and always will see my counselor and I know she'll be therewhen things are worse and on those days and times I need her most andshe already knows me so well. We talk about doctors and who is mostimportant. Well, a good mental health counselor may be the mostimportant one we could have on this path.Now its not right for everyone. Some can make it with family support. Icouldn't. Most can't. Most need more. If you feel your depression takingover your life or your anxiety. If you ever have suicidal thoughts (andyes, wishing you were dead even if you'd do nothing to cause it isclinically still a suicidal thought). Get help. It can do wonders.Please don't feel that you should be able to handle it without or itssome character weakness to reach out and seek assistance. We'resometimes a form of group therapy here but private individual can stilldo wonders. You may also need medications, whether anti-depressants oranti-anxiety. I personally feel everyone told they have such a diseaseshould be given a referral right then to a counselor. Certainly Ibelieve it also as something to accompany a prednisone prescription.There is nothing wrong with being depressed or angry or feeling hopelessabout this disease. But, you can take action to feel better. It'spossible. Take it from someone who in 2005-2006 had no will to live butwho now with a terminal disease, with oxygen, with something like 19conditions or issues, with 17 doctors last year and 14 or 15 this yearenjoys life and wants to make the most of it as long as it continues. Itchanged my life. These are the best years of my life.End of sermon. lol. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2009 Report Share Posted August 12, 2009 PJ I've learned so much from others here. Not so long ago I was the newbie trying to figure it all out. > > Dear Bruce, > I'm basically a lurker, but occasionally post. Thank you so much for all the information you provide. I've learned so much from this support group. I was just talking to my daughter-in-law about how we really need to take the bull by the horns when it comes to our health. > > Thanks everyone for all the bits and pieces of your lives you share. It really does help. > > Sincerely, > PJ from OH, 54, IPF '09, Sjogren's '95 > > Counseling > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > There are certain things I find myself crusading a bit for. One is > > > oximeters. Another is getting to an ILD center and the best doctor you > > > can. Another is insisting on what you need from your oxygen provider. > > > But one that I want to remind everyone of today is mental health > > > counseling. > > > > > > I owe my life and the quality of it to my counselor. I went through far > > > worse than PF when dealing with depression, anxiety, and more. Life > > > wasn't worth living to me. But by the time I was diagnosed I was in a > > > better state. So, to me, I can honestly say about the PF that I've been > > > through worse. > > > > > > We have a terminal illness, whatever you take that to mean. But its a > > > harsh thing to hear. I would expect it to be depressing and cause > > > anxiety on nearly everyone. As you progress, as you take meds that play > > > with your mood, it can get worse. Ultimately depending on the form of > > > our ILD we may not be able to beat the physical disease, certainly not > > > reverse the damage, and often not stop the progression. I personally > > > know my life expectation is short although I can hear Peggy now > > > reminding that we don't have expiration dates stamped on our behinds. I > > > haven't checked with a mirror so maybe she's right. But what can be > > > helped is our dealing with the disease. The forums I belong to have been > > > invaluable. I've learned how to live with it and make the most of it. > > > But, I still and always will see my counselor and I know she'll be there > > > when things are worse and on those days and times I need her most and > > > she already knows me so well. We talk about doctors and who is most > > > important. Well, a good mental health counselor may be the most > > > important one we could have on this path. > > > > > > Now its not right for everyone. Some can make it with family support. I > > > couldn't. Most can't. Most need more. If you feel your depression taking > > > over your life or your anxiety. If you ever have suicidal thoughts (and > > > yes, wishing you were dead even if you'd do nothing to cause it is > > > clinically still a suicidal thought). Get help. It can do wonders. > > > Please don't feel that you should be able to handle it without or its > > > some character weakness to reach out and seek assistance. We're > > > sometimes a form of group therapy here but private individual can still > > > do wonders. You may also need medications, whether anti-depressants or > > > anti-anxiety. I personally feel everyone told they have such a disease > > > should be given a referral right then to a counselor. Certainly I > > > believe it also as something to accompany a prednisone prescription. > > > There is nothing wrong with being depressed or angry or feeling hopeless > > > about this disease. But, you can take action to feel better. It's > > > possible. Take it from someone who in 2005-2006 had no will to live but > > > who now with a terminal disease, with oxygen, with something like 19 > > > conditions or issues, with 17 doctors last year and 14 or 15 this year > > > enjoys life and wants to make the most of it as long as it continues. It > > > changed my life. These are the best years of my life. > > > > > > End of sermon. lol. > Quote Link to comment Share on other sites More sharing options...
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