Gail's Boston trip

[skate4life]

Hope to hear from Gail as we all miss her and are concerned she is okay.

[jade]

🍀Gail, thinking of you 🍀

[jim]

[lavishgail]

Ty everyone. I'm ok. Depressed but I'll get through, I always do. Ty for prayers they are greatly appreciated. I posted in today's post area Saturday. Ty again.

[lavishgail]

I have Fibrosis disease with Emphysema. A very rare smoking disease. And deadly.

I wouldn't go reading about it. Bottom line like many of us are facing is death. Just like a prison sentence.

I still have not heard at what point I'm at? Like 4 stages, but I have a feeling of where I'm at . murse didn't call me back nor did the doctor. When they first told me what I have, I giggled like a little girl and said ok! I didn't even ask one question? I was numb.

Later my brother reminded me about a little over a year ago they told me they thought I had that!! I went into Denial "Not a river in Egypt" oh well.
Have a blessed day!

Oh forgot to tell you y it's rare? because to have Fibrosis and emphysema
At the same time and being a woman is rare! 😧😷

[sallybrown]

Dearest Gail - I am speechless over this “new” development. You are 💪 strong - please remain so. Be gentle with yourself as you process this.

You will be in my 🙏 and ❤️.

[lavishgail]

Dearest Sallybrown,
I'm scared 😨. I love you so much, Thank you. I pray 🙏🙏 For all here. I pray God gives me some time to be with them grandbabies I have?

[jade]

🙏🤧

[lavishgail]

Hi Guy's

Well I've been feeling ok except my chest from I think putting the tube down to keep me breathing while I had my operation.

I've been coughing over a few years now. Anyway just wanted you all to know so far I'm doing ok. 😃

[sallybrown]

Thanks for the update, dear friend!

So glad you are “okay”. The discomfort in your chest/throat area should lessen soon. I had the same experience one time after a lung procedure.

Know that you are thought of often. ❤️ and 🙏.

Hope you get some good rest tonight.

[aero63]

Sending out thoughts to you

[lavishgail]

Thank you everyone.

[sallybrown]

Gail - still thinking and 🙏 for you. Is there a support group for people with lung problems near you? I attend one at a nearby hospital. And a local senior center has one aimed at people with fibrosis lung disease. These groups are so helpful...sometimes I talk, sometimes I just listen. But everyone is nice and listen without judging. Sometimes hearing other’s experiences dealing with the same problem is very beneficial. You know you’re not alone. Plus it takes a lot of the pressure off family members...who aren’t as “talkative”. 😉 Just an idea that might be helpful at some point. The group I belong to also offers some fun events too. 😘

[jade]

Yes to joining " lung group", after the excercise we go often to the local pub, to relax.

[lavishgail]

I'm going to breathing in a few day's it's either monday or tuesday. But they will call again to let me know. Its right at the hospital. I haven't looked into a group but I will now, thank you

Sallybrown, I have Fibrosis and emphysema. This is rare for them to betogether. Plus small airway disease. I've not heard of. A group meeting but ty I'll look into it!

[sallybrown]

Gail - I think you would enjoy belonging to a support group. Education, socialization and emotional support. Nice to be with others who understand.

[lavishgail]

I am at a lung group guy's right here. I'm perfectly happy here. Ty but don't worry ladies ok. Ill be fine. Thanks for thinking of me ok? Xxoo

[lavishgail]

I'm really not fine at all. If I went to any groups to get help from it would have to be one group for death, one group to try to understand all of this everyone keeps candy coating for me! I had a doctors appointment yesterday for my lungs. But our power went out so I couldn't even see to get dressed! Gosh now I have make another one

[Evie]

Hi Gail

I am so pleased that you brought this thread up to the front.  I feel very keen to reach out to you. 
I understand your frustrations, especially how the candy-coated stuff makes you feel, sugar coated bull still tastes like crap. 

Uncertainty sucks... and I dare say when I was first diagnosed I felt this is the beginning of the end for me.  Some days it is so hard to catch a good breath if I exert myself even just a little. I wonder how worse it can possibly get. I sometimes even think 'lets just get it over with' --- I guess a death wish of sorts - not suicidal thoughts mind you... just not wanting to cope with this COPD years and years. 

I  want you to know that I have taken inspiration from your posts on this forum; you have  so graciously been dealing with this a very long time.  Much longer and more brutal than I have faced. I think you are a remarkably strong woman, brave and honest.  Zero Bull.... from you.  I  love that about you.  I am so proud of your ability to come here and announce that right now you are NOT doing so well.  Venting is a wonderful therapy.  I just want you to know ... I hear you

P E A C E
Evie

[lavishgail]

Hey Evie,
Thank you for all the beautiful things you said about me! I really needed to hear that, you made my night. Thank you Evie..

I reread some of what I wrote and I'm still hear like what? 4 or 5 years. I beat the 3 to 5 years to live. Let's pray for at least another 5 years. One can pray right?

I also have bipolar disorder so I often get depressed, sometimes more than other times but with all that I have it's no wonder I have any happiness but I really do. I really enjoy life today! We shall see what tomorrow brings ? Evie I'm so happy you have not gone through what I have and I also pray to God you never have to go through what I do. I spend more time inside than ever be4. I'm not as active as I once was and crap, most of the time I still feel like a kid. So that must be how I get through. I pretend I'm a big kid now! . I love you so much! Thank you all!!

[shelley]

Hey there Gail

You’re not alone. I also have emphysema and fibrosis thrown in for fun. I’ve a whole lot of other issues that have evolved over the 28 years I’ve had this disease. Didn’t know about the fibrosis until a few years ago but honestly, after all this time it didn’t bother me. I’ve been on oxygen 14 years now and I started retaining Co2 about 3 years ago. Egan, I hate BiPap. and I haven’t even started to mention other things that have evolved as a result of the lung disease but are not in my lungs.

I’ve been in Palliative Care for at least 4 years if not longer. My specialist and I laugh when she looks at my file as it’s her thickest. I did take the initiative recently to ensure I had approval for MAID. I have no intention of suffering my way into the great beyond but I also intend to fight up until I’m ready for the great sleep. My daughter is getting married (we hope.....grrrrrrCOVID) in October so at the very least I want to get past that. I’m confident that I will..

Gail, the end is frightening and none of us wants to reach it but you have to laugh....we made it this long. Every time a doctor tells me I’m near the end, it would seem I prove them wrong and it sounds like you’re the same so keep your eyes on the road ahead. There’s still a long way for you to meander. 🤗

[lavishgail]

Awee, Sharon..
My goodness I'm first balling my eyes out, feeling all so sorry for me " boo hoo" I can't believe I met another woman with fibrosis and emphysema together? Wow they said that's like, a 3 to 5% women in the whole wide world!! think of that!! wow that's weird what's very strange for me to think about that. I mean who would Have ever thought I would meet somebody, that has basically the same thing as me maybe more.

And when you say "laugh" I can't believe how bad I bawled my eyes out and then laughed my head off all at the same time, haha 😄 that was "really funny" you crack me right up. Wow, that was really a great read and thank you.
Oh boy, thank you Sharon for that! I do understand what you are going through! I think Evie has same? I have been living with First you won't believe this, here goes, I have Lupus, fibromyalgia, bi-polar, lung disease, high blood sugar, hypertension, diabetes, omg 😲 I can't go on it's making me sicker,

I read the report and it said The fibrosis and emphysema is not smoking related first they said, something I've ingested rather than the smoking first that comes in second they said so I wonder what it is that I breathe and had to be when I was working on the farm? back then I probably started when I was very very young? Who knows I really didn't start inhaling my cigarettes until I was in my twenties. I since have quit it's going to be a month on the 14th of this month August. I'm proud of me! But really? What does it matter now, might as well just keep right on smoking you know with everything that I have wrong with me doesn't matter anymore really so I hear what you're saying I do.

I'm here to for anybody that would like to vent I love to talk and I love to hear from you I don't want to be the only one or feel that way so, anybody that has anything remotely the same as me airway disease? and your lungs fibrosis emphysema? that's really strange for another woman to have it that I've met here so thank you for telling me. I don't feel alone anymore.