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Post by angel86 on Feb 27, 2017 9:36:50 GMT -5
Good morning everyone! I'm new to the site and trying to find my way around. I have COPD and have been looking for support groups. I've had it about 5-6 years now. It seems to be getting worse so I got scared and now hoping support groups will help especially with people that have or has it as well.
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Post by joany on Feb 27, 2017 12:07:24 GMT -5
I so hope we can help you; and you can help us. Most of us joined from a point of fear. The fear subsides, but raises its ugly head sporadically.
Who are "we?" A couple of weeks ago, there were responses from group members to a new member who gave an overview of who they were. I liked this as helpful to the new member, but also helpful to us regulars(I learned some new stuff).
I'm 70+ and, through no effort on my part, I've sailed through life with barely a hang nail. My plan was to continue this path until eternity. No go! For about 7 years now I've been COPD tested. I'm not a good patient (my doctor would probably confirm that). I'm not a good group participant (I'm a private person, but wrote heartfelt letters on flowery stationary). I'm a over-the-moon researcher (I will search online daily for all the ins and outs of the abcd medicine; I finally got rid of my encyclopedia set and my library card)
Time for lunch...
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Post by lavishgail on Feb 27, 2017 14:55:40 GMT -5
How nice to meet you Angel. I'm Gail and I have Emphysema and Lupus pnemanitis. When my Lupus flares it goes straight to my Lungs. I always end up in the hospital at least 2x a year stricken with fear! I'm now on a immune suppressant, and I feel my Lupus is in remission at this time. Lupus never goes away but, it does go into remission. Thank God. I'm soon to be 55 in August. I've had this awful emphysema for about 5 years now. Recently I went for testing at the Pulmonary doctor and my lungs were good, they said I was even better then the last time I went be4. The Noles and nodules on my lungs that they were watching for the last 3 years shrunk, so this is very good, most went away so far no cancer. God is Good. We had been watching me for cancer, and I'm ok. I have 3 grown son's and 9 Grandchildren 7 are step but in our family we don't use the "step" name. But, I have always loved children and have been blessed to have so many in my life. God gave me a special gift, and that gift was being a mom and grandmom. My nephew Jesse and my youngest son live with my husband and myself. I've been married going on 23 years and together like 25 years, something like that . Can't really remember, all these years hahaha. I love this forum, I love everyone here, this is my family. You will so enjoy it here too bc everyone is so caring and loving-kindness I'm so happy you made it here, you will really love it too. Take you're time looking around and read all the great info the you feel fits you. Hi Joany, I'm so glad you shared, I also found out new things about you and you're a beautiful person inside and out. I used to own a doctor's medical book of diseases, and back in the day nobody ever knew what some things were, like this panic condition I have, I found it by looking up nervous system and things like why am I so nervous. I kept studying and found what anexity was. I went to my doctor when I was able to leave my home, as I also has agoraphobia. It became really bad after my second son was born and I was locked inside a couple years. I'm fine now that I have my meds. Oh my life is a very interesting worldly crazy mess. I started to write a book with a publisher, but got scared and stopped. But wow what a book my life would be haha. This is only surface stuff. But that's how I keep it to bc, this is a site for a disease called COPD not *GAIL'S LIFE** LMAO. And sometimes I get mixed up, ** just kidding ** Anyway I'm so happy to meet you Angel and thank you Joany for sharing I'm so happy you did. It's good to share, how else will I learn if no one will share??? So please keep sharing, this forum is private unless you're a member, and John and Jim and David and Mary make sure we are safe! If anyone wants to message anyone you can, that is a very private way to stay private but yet have ever someone to lean on when you need too. I have my **Special Friend** I lean on. And you can also give someone you feel you can trust you're password let's say to this site so you will never lose it. I have. Or perhaps someone you get to know you're phone numbers for incase something happens, we all care and we don't want to lose anyone, we become very attached to each other, I know I am. And idk where I would be today, if I didn't have the love of all my friends today. Maybe dead. Also one more thing, I Have been smoke-Free since January 14th, 2016. So I'm very proud and thankful from everyone here who helped me, weather they know ow it or not JOHN** and SPIKE** Love you all, Gail XOXO
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Post by jade on Feb 27, 2017 16:08:08 GMT -5
Welcome Angel. Greetings from Australia. Take care Jade.
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Post by John on Feb 27, 2017 17:21:09 GMT -5
Hi angel ! I'm from the Berkshires in Western Massachusetts . As time goes on you will get to know everyone and we will get to know you . Welcome to our online family
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Post by gerald on Feb 27, 2017 17:27:32 GMT -5
Angel. I live in the Lower Mainland of BC. I have had COPD for 30 years, but only diagnosed fifteen years ago. And that has brought along Heart Failure. A lot of us have been down the path you are on and the people hear understand what you are going through. It is good to see you here. Gerald
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Post by ozboy on Feb 28, 2017 0:48:08 GMT -5
From my journal........(Selective) Misdiagnosed as Chronic Asthmatic, 7 hospital stays, Intubated over 2 weeks.... First PFT in Jan.2014, diagnosed Stage 4, 32% Emphysema..after I finally was able to return to Australia from Philippines in Dec'13... Stable, no hospitalizations, completed COPD trial of 13 months, Lung Function now at 22% but saturation high 90's continuous. Chronic rib pain from hyperinflated lungs, no options for any type of procedure, not a good candidate for transplant surgery...Still can walk at own pace and drive fine and very independent....Will be going on Med.MJ or CO.>>(Guess still waiting.. )....Currently on MS Contin and Oxycodone... Got a Hypoxia Issue and been on NIV.Bi-Pap twice in 2016.....now on Supplement Oxygen for Activity even though Saturation recovers to high 97-98% on 1LTM when I need to keep it under 94%......This is my Catch 22.... LF at 18% after catching HAP. Influenza A.
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Post by Suzanne (Suz) on Aug 19, 2017 8:51:53 GMT -5
Welcome to COPD in Canada & the World Angel86 - come join us at the Over the Back Yard Fence link when you have a chance that is where we meet and see what's new with everyone. Don't forget to browse all over for some great tips on how to survive this sickness and to learn a few more tricks we love to share. See you soon. PS: this is certainly not a fun disease - I'm so happy many of our members have shared with you. Hope it helped!
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