Welcome susanny

[John]

[bobbioh]

Welcome! Jump in anywhere I look forward to reading you and getting to know you. Bobbi

[Blossom/Jackie W.]

Welcome Susan!

Please feel free to jump in anywhere anytime on any topic. Some folks check in daily at the Fence- it's open to anyone, anytime... (come pop in and have a coffee with us), or

If there's a general interest item or

COPD related issue you want to comment on, share or ask questions, by all means ask away.

Or start a thread on a topic of interest or concern to you.
Whatever YOU are comfortable with. Don't worry about posting in the wrong area or anything; that's why we have great moderators who can move things or copy etc.

There's a fair bit of information here and folks are pretty friendly and quite diversified when it comes to COPD; if they don't know something they'll point you in the right direction at the very least.I guarantee you'll be made to feel at home right away!

If you've not yet joined our parent organization/ COPD Canada Patient Network, www.copdcanada.ca/sign_up.htm Please consider it. It's open to e'one internationally and it's Free. Membership has it's benefits!

My name's Jackie, aka Blossom. I look forward to getting to know you!

[aero63]

welcome susanny and glad you joined

[lindab]

[susanny]

What a nice welcome! I look forward to learning and sharing with all of you. Short bio (!), I am 55, live in a rural community in Western NY, married 36 years with 2 grown children, Corinne and Ben. I was diagnosed with COPD in 2006. Was mild at that time(FEV1 74), then suffered several broken ribs and was pretty much "chair" ridden for months. This meant very shallow breathing, which I think had major effect on my lung capacity. In Jan. 2008 I came down with bronchitis and went through several antibiotics, ended up with pneumonia, and my FEV1 plummeted to 36 (it's now 32). By Sept. I realized there was no way I could work any longer and took an early retirement from the school district I worked for. Halloween was my last day so I went out with a crazy party!
I have been on long-term prednisone since 1/2008 and am tapering off now. It has left me with all the bad side effects that come with the steroid; osteoporisis, diabetes, thrush, Cushings syndrome, you know, the fat face and round tummy, etc. I am using Pulmicort and Brovana by neb, Singulair, Spiriva, and Proventil for fast acting help. On O2 at night and upon exertion. It took me a couple of months to allow myself to be seen in public with the O2 but I needed my freedom more than my vanity. I just found out the other day how much the O2 helps me when shopping when I had the same difficulty with SOB that I used to have when I was out. When I got back to my car I discovered my tank was out of O2. I sure wish they had some kind of indicator on them to show how much is left in the tank, like they have now for propane tanks for your grill. By the way, mine is compressed, not liquid.
I miss my old life. I'm learning about my new life. At first I thought I was going to die within a year. That's how I felt and what I thought the diagnosis of COPD meant. Thank you, thank you, thank you, to the 1st person to come up with forums and the founders of COPD forums, esp. They have taught me that it is not a death sentence and that I will have many more years of life, just not the same as before. I can deal with that!
I do have a question: why do some people with FEV1's much lower than mine have the breathing ability to continue working, and some doing pretty strenuous work, and I had such a hard time just getting from my car to the building, let alone my classroom? Is the FEV1 number not necessarily a factor in how SOB we get? I did a fair amount of walking at my job, so I wasn't sedentary.
Once again, thanks for the welcome. I knew I'd be long-winded once I got started here, and I hope I haven't bored anyone. Enjoy life!

[Blossom/Jackie W.]

Susan.... wow! That's a big loss rather quickly if I might say. I also have to say I love your attitude and I'm so pleased for you that you've found some solace with fellow COPDer's.

As for your question...... re: FEV1 and the differences between people.... aswell as a few other items ..... and rather than comment here where it may get missed....

May I suggest/request you copy and paste it over in the COPD Portal area? That way it might be of benefit to you as well as others and everyone can learn en route!

TY and, may I say, I'm glad to see you "jumping in!"

[chrisw]

Hi Susan,
I know that being on prednisone for any length of time usually results in significant weight gain. It may be possible that this is a large part of the drop in FEV1 as too much weight can cause a drop in FEV1, as can significant deconditioning. You might want to check out a video at tinyurl.com/o8psa5 (Sorry - you have sit watch a long ad first - but I think the Video is well worth watching!)

As regards a meter for compressed oxygen tanks, this is pretty well essential, and if your system does not have a pressure gauge then I suggest that you ask your oxygen supplier for a regulator with a pressure gauge. In fact I have never seen a tank regulator without a gauge, but that doesn't mean that they don't exist!

[susanny]

Blossom, I am going to now admit how computer illiterate I am by saying I do not know how to copy and paste. Are you able to do this for me or do I have to do it myself? If not, I will be talking to my daughter this weekend and can ask her how to do it.

Chris, thank you for the video link. It is 1 AM, so I'll watch it later on today. As for the pressure gage, I do have one, but I didn't know the gage showed you how much O2 was in the tank. I just thought it showed the pressure while you are using it and went to red when empty. So if it starts out at 4, will it slowly go down to the red? I've just never watched it. I guess this tells you that I am also O2 tank illiterate, as well.

[Blossom/Jackie W.]

Susan not a problem at all....... I'll copy and paste both yours (portions of) & Chris. I just feel it's important enough that it should be where more folks, both visitors and posters, will see it) especially for those who may be experiencing the same thing.

(I'd move the thread but I'd be carrying over everyone's warm welcomes to you and again, it might get missed)

[virginia]

Susany Welcome..and that is a very pretty name..
Felt sad reading your post , having to go through so much at one time but, once you want to find out more about your diease, you will find ways to help your self, and there is lots of informations on the forum, and real nice people..
Glad your here...Virginia

[mary57]

Welcome susany so glad that you found us. I too have just left working, in a school, I left at Easter.

[susanny]

Thank you, mary57, for the welcome. What grades did your school have? I was in middle school in a self-contained 6/7th grade classroom employed as a paraprofessional, or teacher's aide. It was a dream job, just me and the teacher, and 8 kids. Love, love, loved it! I have been on Social Security Disability since 1988 (for something different than COPD, Multiple Chemical Sensitivities caused by exposures in a new building.) Anyway, I have 3 sisters who are teachers and they convinced me to try and go back to work at a school. I had been so devastated by the tragedies of Columbine School in Colorado and 9/11 and I knew I had to find a way to make a difference in the small world around me. So in Jan. 2002 I did just that and after 48 years I finally found my calling in life. That's the hardest part about leaving work for me. I didn't get to spend enough time doing something that meant so much to me. Not enough time giving back some of the love and support I have received from others all my life. My school is the poorest in our district and the kids need all the love we have to give them.

So, tell me, what did you do at the school you worked at? Were you there your whole career? Do you miss it? So many people I worked with were envious when I left. I guess I didn't work there long enough to get burned out. Is it totally rude of me to ask if the 57 after your name your age? If it is, we are close to the same age. Did you work with COPD for long after you found out you had it?

Boy, am I nosy. Sorry. Ignore me if I'm too bad. I just haven't "talked" to anybody with this disease who has left their job because of it. I know most of us have, but I haven't seen any postings about the loss.

Sue

[mary57]

Sue, yes the 57 is my age, I also was a teachers aide, but over the years our name has changed from lay assistant, to teacher aide, to educational assistant to....who knows what's next. Over the years (26) I've worked in kindergarten, special ed,(autisim, behaviourial, remeidal, DD,) library, and in grades K to 8. I also ran an After School Care program for 15 years (in the same school) with crafts, sports, etc. and did lunch supervision. As you can see I've done a bit of everything and LOVED it ALL. I 'fell' into this field by volunteering at my daughters school so I say the job found ME and I was blessed for it. Working with the kids is so rewarding and I think only people who do this work really understand the pull.
I worked for quite a few years after I was diagnosed, and managed well, until a couple of bad bouts of pneumonia and nasty flu's (and you know how much a breeding ground a school is) that this past Easter, after being off work more than at work, I left on a medical leave. There is the possibility of going back, but I have to be honest with myself that the odds are not good. As for the 'loss' I'm still wrapping my brain around it, but with it coming up summer,and I spend most of that up at the trailer so, it will fall into place, I fear the hard part will be in September. No you were not too nosy. Tell me how are you coping with the change in lifestyle? what helps? what hurts? In the meantime take care of yourself and keep posting you will find this a truely great place to share/vent/chat.

[lindab]