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THANKS.. for sharing

cboyer68 Message
10 Jan 2015, 05:55 PM

Thank you all so much for sharing your stories. I am recently diagnosed , and have been struggling for several years. I'm scared that things are going to get worse before they get better . I'm also uplifted to hear that there are people who understand /support my journey..I believe Ive got some good drs..but ill take any suggestions you have for me..great blessings to all of you
AmSun Message
10 Jan 2015, 08:44 PM

If there is any one piece of advice that I could give it would be "do not let this disease define you!" While most of our new normals are not what we had hoped for in life, it is so important to fight as if you're winning and make adjustment to insure that you are taking care of yourself. We had to put a laundry on the main floor instead of in the basement and hire a lady to come in for 3 hours per week. With those accommodations, I can function rather well and keep up. I now work part time and volunteer, but do so at a pace that is compatible with my energy. I wish you well and encourage you to look at the resources out there that look at the root causes of autoimmune diseases and how to cure them. In additional to my amazing pulmonologist, I see a specialist in functional medicine and share the information with both. The functional medicine specialist gives me hope and lots of dietary changes to help cure the problems within the immune system, while the pulmonologist keeps the interstitial lung disease from getting worse. Best wishes as you recover!
cboyer68 Message
11 Jan 2015, 01:02 AM

Good thing...have passionate warrior tattooed across my chest.lol .I'm also still working part time and have studied extensively in alternative therapies..Thank you and may we both recover quickly and completely...bless you..
AmSun Message
11 Jan 2015, 09:04 AM

"Passionate warrior!" How appropos. You'll do well. Bless you also.
Kat201 Message
11 Jan 2015, 10:20 AM

I totally agree with you AmSun and would love to hear the dietary advice that you get? Also cboyer68 any information on alternative therapies that you have found helpful would be great! Keep up the positive vibes xxx
cboyer68 Message
12 Jan 2015, 03:47 AM

I already eat very healthy ..I try to stay away from processed food caffeine,, too much sugar. No msg or artificial sweetener also no alcohol and until recently my only medication was flower essence..lol....exercise as much as possible..I love to dance but often over due it when I'm alone..lol..great release for me..I have been real involved with essential oils for inflammation and stiffness/pain..I have worked with lavender, peppermint, eucalyptus, pine,sage ,and rosemary..so far so good once I get it perfected I will share..flower essence of holly, vine, self heal, and rescue remedy has done me good..walnut for change...collect gem stones to as I am a reiki master..also I was reading a study on pomegranate juice helping interstitial lung disease by removing toxins so I have added that my diet is well along with pineapple
cboyer68 Message
12 Jan 2015, 01:14 PM

Oh..also..no red meat and no organ meat in diet..I'm curious.. I seen a Dr that suggested that bad teeth or my joint may be carrying strep that would cause these problems in my autoimmune system..this is the second time I've hear this..line shot but I'm going to have it checked..have any of you been checked or heard of this?
lildreamer Message
13 Jan 2015, 09:28 PM

I find that the biggest issue of this disease is worrying about if and how much it may progress. Although some say that progression is inevitable, there is no real evidence to suggest this as I have found that most who have this disease have improved with treatment over time and everyday I am reading about medical miracles and treatments regarding other diseases and conditions. It is only a matter of time before we get on top of this one. Stop worrying and start living is my advice. I know its hard and I too can't help but think of what possible hell I can go through in the future, but I just hold on to a little hope that being an individual disease that effects individuals individually will spare me the trauma associated with it. Good luck.
cboyer68 Message
15 Jan 2015, 06:06 AM

I to worry but I have overcome a lot and have faith.. I hate asking for help and feel that I'm letting my family down. I try to remember that I did not choose or plan this ,,,but I am also not a victim. I will continue to do what I can remain active and strong..and enjoy whatever time I have to the fullest..I do have interstitial lung disease and fibrosis..mind you I may do it slowly..with rest periods..lol..