Guest guest Posted December 13, 2008 Report Share Posted December 13, 2008 Barbara Most of what little I know, I know from researching my own conditions, from what I've learned here on the board, and from researching when I've seen something mentioned here on the board. I'm one who just has a need to know and a quest for knowledge. I guess I feel empowered by understanding as much as I can about my conditions. I ask questions and look for answers. I know very little about diseases that I don't have or don't relate to what I have or that I've never had symptoms of. An example would be when the words undifferentiated connective tissue disease or polymyositis came up in my diagnosis as possibilities, then I sat out to learn about them. I joined the Myositis forums and a connective tissue disease forum and lurked. I know any of these may eventually manifest itself as Beth's just did. It's just an obsession for knowledge which is good and bad, but just part of me. Others can be much happier just waiting and finding out only what they must. It's my nature that if something comes up in conversation or on the board, I have to head to google. If I might have a condition I feel compelled to head to a forum on it so I'd be prepared to live with it. For me, understanding what may be ahead helps me prepare both emotionally and through action. It then keeps me from dwelling on it and allows me to live today to its fullest. It also helps in my quest to make sure my PF/UIP runs its natural course but I don't get short circuited by something avoidable. I learned to be on the lookout for pneumonia and how to help myself do so starting with the Respiratory Tech in the hospital after my VATS. I've learned from many here about avoiding germs. I accompanied to her surgeon Thursday wearing a mask and not touching each other or her talking in my direction as she has battled a cold (but no fever and on antibiotics). I just took her lunch and left it inside her garage door as she's still not well and they did a refinishing of her bath tub yesterday creating an awful odor. I'm keeping the cats for two days as a result. I scooped the litter wearing medical gloves and a mask and immediately taking it out and washing well after. Some obsessions are helpful to us just as some are harmful. However, the one thing I do know is that I'm comfortable with my disease and how I am today and what I face. Furthermore, my time since diagnosis had been as good a period as i've had and much happier than many 18 month periods. Have oxygen, will travel and I don't let it slow me down. Good example. Why did I learn so much about oxygen and all the choices? Simple. To be sure I had what was best for me. Meanwhile I learned enough to know its not the best answer for everyone. I can't change my disease or any of my conditions. However, I can manage them and I can live and enjoy. Information helps me do that. To many to know what I've learned would have the opposite effect of scaring them. I came to the online forums before my VATS and learned what to expect and what the doctors hadn't fully disclosed. So, I wasn't surprised that it wasn't a walk in the park. Again 90% of what has benefitted me has been learned from others here, many of whom have been incredible role models. > > Just curious: how do you know so much about these various and sundry > illnesses? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2008 Report Share Posted December 13, 2008 > > > > Just curious: how do you know so much about these various and sundry > > illnesses? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2008 Report Share Posted December 13, 2008 Barbara I must add being diagnosed with at latest count about 19 issues or conditions, most very minor and easily controlled, and referred to a total of 17 doctors this year has taught a lot too. I don't intend to see nearly as many doctors in the future nor as frequently. But, when one says you need to go see the oncologist to check for this form of cancer based on this test, off you go. Fortunately, none of those trips have led to the discovery of anything. > > > > > > Just curious: how do you know so much about these various and sundry > > > illnesses? > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2008 Report Share Posted December 13, 2008 Thanks for the informative reply, Bruce. I have been wondering how you gained your knowledge, and I'm happy that I now know! Were you a writer in your prior life? You write so clearly..... BBruce Moreland wrote: BarbaraMost of what little I know, I know from researching my own conditions,from what I've learned here on the board, and from researching when I'veseen something mentioned here on the board. I'm one who just has a needto know and a quest for knowledge. I guess I feel empowered byunderstanding as much as I can about my conditions. I ask questions andlook for answers. I know very little about diseases that I don't have ordon't relate to what I have or that I've never had symptoms of.An example would be when the words undifferentiated connective tissuedisease or polymyositis came up in my diagnosis as possibilities, then Isat out to learn about them. I joined the Myositis forums and aconnective tissue disease forum and lurked. I know any of these mayeventually manifest itself as Beth's just did. It's just anobsession for knowledge which is good and bad, but just part of me.Others can be much happier just waiting and finding out only what theymust. It's my nature that if something comes up in conversation or onthe board, I have to head to google. If I might have a condition I feelcompelled to head to a forum on it so I'd be prepared to live with it.For me, understanding what may be ahead helps me prepare bothemotionally and through action. It then keeps me from dwelling on it andallows me to live today to its fullest. It also helps in my quest tomake sure my PF/UIP runs its natural course but I don't get shortcircuited by something avoidable. I learned to be on the lookout forpneumonia and how to help myself do so starting with the RespiratoryTech in the hospital after my VATS. I've learned from many here aboutavoiding germs.I accompanied to her surgeon Thursday wearing a mask and nottouching each other or her talking in my direction as she has battled acold (but no fever and on antibiotics). I just took her lunch and leftit inside her garage door as she's still not well and they did arefinishing of her bath tub yesterday creating an awful odor. I'mkeeping the cats for two days as a result. I scooped the litter wearingmedical gloves and a mask and immediately taking it out and washing wellafter.Some obsessions are helpful to us just as some are harmful. However, theone thing I do know is that I'm comfortable with my disease and how I amtoday and what I face. Furthermore, my time since diagnosis had been asgood a period as i've had and much happier than many 18 month periods.Have oxygen, will travel and I don't let it slow me down. Good example.Why did I learn so much about oxygen and all the choices? Simple. To besure I had what was best for me. Meanwhile I learned enough to know itsnot the best answer for everyone.I can't change my disease or any of my conditions. However, I can managethem and I can live and enjoy. Information helps me do that. To many toknow what I've learned would have the opposite effect of scaring them. Icame to the online forums before my VATS and learned what to expect andwhat the doctors hadn't fully disclosed. So, I wasn't surprised that itwasn't a walk in the park. Again 90% of what has benefitted me has beenlearned from others here, many of whom have been incredible role models.>> Just curious: how do you know so much about these various and sundry> illnesses?>Barbara McDIPF, Sept 08Beautiful Western NC Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2008 Report Share Posted December 13, 2008 I don't envy you the doctor visits. Sounds like a full-time job!Bruce Moreland wrote: BarbaraI must add being diagnosed with at latest count about 19 issues orconditions, most very minor and easily controlled, and referred to atotal of 17 doctors this year has taught a lot too. I don't intend tosee nearly as many doctors in the future nor as frequently. But, whenone says you need to go see the oncologist to check for this form ofcancer based on this test, off you go. Fortunately, none of those tripshave led to the discovery of anything.> > >> > > Just curious: how do you know so much about these various andsundry> > > illnesses?> > >> >>Barbara McDIPF, Sept 08Beautiful Western NC Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2008 Report Share Posted December 13, 2008 Barbara Was, but I scheduled it in such a way as to not let it keep me from anything I wanted to be doing. And, most of my doctors are very convenient. > > > > > > > > Just curious: how do you know so much about these various and > sundry > > > > illnesses? > > > > > > > > > > > > > > > > Barbara McD > IPF, Sept 08 > Beautiful Western NC > > > > Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.