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Post by valerie on Oct 18, 2011 11:07:14 GMT -5
I have been trying to think about the best way to introduce myself for a while, so here goes! I will be 63 next week and am still working full time. I was diagnosed about 3 years ago and have been feeling pretty awful lately. It seems like I am short of breath all the time and it's all I can do to drag myself to work and then home. Once I get home, all I want to do is collapse, and it shows around my house. I was so proud of my flowerbeds for so many years and now I just have let them go to mostly weeds. Laundry gets done when it absolutely has to because the basement stairs do me in. My house is more than a mess inside - it has never been this bad even when I had all five children living at home! I'm dreading the holidays this year because everyone comes to my house and as much as I love them all, it's just so hard to do the things that used to be easy for me, like cooking huge meals and welcoming them to a clean house!
I'm just so tired of being tired and worn out! I need to keep working as long as I can because I need my health insurance and the income, but I just don't know how much longer I can do it. My husband tries to help, but he has no concept of how much work it really is to keep things going. He keeps telling me I need to rest when I'm at home.
I look forward to talking to you all!
Valerie
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Post by Betty on Oct 18, 2011 15:42:44 GMT -5
Hi Valerie,
5 kids wow. I just have 3, all girls.
Are you on oxygen or any kind of meds and where do you live. Back east I suppose because of having a basement. I live in Las Vegas and no one here has a basement unless it is one of the mansions that the stars live in and then it's call a play room.
Do you live at a high elevation as that doesn't help with the breathing.
Well you have 2 more years of work before you can get on medicare and that seems a long time when you can't breath.
Do you smoke or does anyone in your house smoke. That would be the first thing to stop.
Give us a little more information and we will jump right in with what ever helpful information we can provide for you.
Glad you are here and keep posting.
Betty
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Post by sue on Oct 18, 2011 16:41:03 GMT -5
Hi Valerie,
I'll be 52 next month (yikes!) and was d'x in 2005. I have 5 kids, 9 grands, 7 stepgrands and work full time 3rd shift. My job isnt that bad and I can sit when I need to/pace myself, etc. Stairs do me in too. What do you take for meds? I'm lucky enough right now to get by on advair. How old are your kids? Explain the situation to them and ask one of them to host the holidays? At the very least make it all potluck. We do that at Christmas and use paper plates, less washing up for one. Welcome again and glad you posted! Feel free to ask questions as someone will offer help and or suggestions. You arent alone, ok?
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Post by maryaz on Oct 18, 2011 19:58:51 GMT -5
 Valerie, with this disease we find that we cannot keep doing things the way we did. There are alternatives and we have to adjust ourselves to them and make it a part of our life. Funny, how when I type this, I am so often also talking to myself.  I need to remember some of this as I have been having a harder time than usual. If you have any specific COPD questions we have a section for that. We have a Daily Chat where we post and just get acquainted talking about our days. We have a General Section where you can post about most anything. There are others but thought these few might help to get started and more comfortable. It sure has to be hard trying to work. Do you know what your Lung Function is or was when diagnosed. Mine was FEV1 20% last check. I am in the very severe stage. We have members here at various levels. Just wondered if we knew a little more we could maybe help you. Had you ever attended Pulmonary Rehab. Wondering what kind of medicines you are on and do you know how to do proper breathing. Hope you keep posting, as you can. I am sure your days are long. |
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Post by valerie on Oct 19, 2011 8:38:17 GMT -5
A little more about my situation - I have five children with ages ranging from 44 down to 28. My 28 year old daughter still lives with us, as does my mom, who will be 93 next month. I spend a lot of time trying to take care of my mom (as much as she will let me!) and trying to keep up with everything. We have 12 grandchildren and 1 great grandchild. Up until a few months ago, our 11 year old grandson was living with us and had been for most of his life, but now he's living with his mom and little brother about 20 minutes away. It's been a really difficult adjustment for me! And, before you wonder, my daughter is not much help!
My lung capacity as of June was 47%, with low diffusion and severe airway resistance. I don't have the report with me, so I'm not sure of the numbers. I use oxygen only at night right now and have for about 2 years following an overnight sleep study. I've been tracking my saturation using an oximeter during the day and it sometimes goes as low as 77- 82 when I am walking a lot at work or going up the stairs, so I will probably end up on it during the day, also which will make things very difficult at work. For now, I just find a place to sit down (or lean!) really quickly and breathe until it goes back up. I know the lung capacity number is pretty high compared with folks on some other boards who seem to feel a whole lot better than I do, but I think the diffusion may have something to do with it. I quit smoking only 2 months ago, and that is also still a struggle. I have always been a "stress smoker" and the stress never seems to go away! I want to live more than I want to smoke, though, so that makes it worth it. The extra money I was spending comes in handy, too!
My meds are Advair, Spiriva, Pro-Air (rescue) and albuteral in a nebulizer when needed. I have had at least one episode of pneumonia each year for the past 5 years and so far have been able to convince my doctor that I really don't want to go into the hospital unless absolutely necessary. I last had it in April of this year and almost gave in about the hospital. I stayed in bed for 10 days and then went right back to work. I have never really bounced back since April and am just hoping that I can get through at least the rest of this year without getting sick again.
Thank you all for responding!
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Post by sue on Oct 19, 2011 9:55:19 GMT -5
What do you do for work?
I have a boomerang kid, he leaves and comes back, grrrrrr, lol and babysit a couple of the grands.
I smoked menthols and when I quit (almost 6 yrs ago now cold turkey) I used wintergreen lifesavers to replace the smokes. It helped replace the after meal cigarette, while driving, stress, etc.
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Post by Betty on Oct 19, 2011 12:17:32 GMT -5
Valerie,
Yes one of the biggies is trying to not get sick. Staying away from sick people, staying out of crowds, out of Dr offices and hospitals that are full of sick people.
You may have to just insists that your family help you out more or just quit doing it and then someone will have to step in and do it if it is to get done.
You know that below 88 O2 is not good so don't need to tell you about that.
But I can tell you that bouncing back from pneumonia or any lung infection is just not going to happen. You can get some better but never back to where you were before you got the pneumonia. Unfortunately, every time we get sick we go done a little more. We come back up but to only about !/2 way to where we were. Does this make sense? It's like going down a flight of stairs, two steps down and only one step up.
Congratulations on stop smoking, That will help a lot. You may not see a difference for awhile but it really does slow down the downward progression.
If there is any particular question you want to ask you can post it under the COPD Section or General Section. Someone usually has the answer or at least can direct you in the right direction to find the answer.
Stay strong and good breathing
Betty
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Post by Toby on Oct 19, 2011 15:39:42 GMT -5
Hi Valerie! I'm glad you introduced yourself to us. Five children is a lot of company for the holidays. I would do what Sue suggested. She is amazing to me! She just about runs circles around her children and grandchildren so any advice she gives you will be good advice for sure. I think we are all different with how we handle our illness. I have been on disability around 10-11 years. I didn't want to leave work. I had a desk job and had to do some walking but not a lot. The company gives you a physical every year and they called me in and said I couldn't work anymore. After hearing so many on here talk about working with severe emphysema I'm glad they made me. Fortunately for me they continued to pay me and for my insurance for myself and my husband. Once Medicare started paying me they only paid the difference.
Will your employer let you work if you are on oxygen? Does your husband have insurance? I feel so sorry for everyone that has to continue working long after they should because of the insurance. Something has to happen soon. We take care of other countries better then we do our own. I have so many friends that are paying extreme amounts for their insurance or they go without. One of our members here has no insurance and it has been horrible for her lately getting the medication she needs.
It sounds like your husband has your best interest as far as resting. Maybe he could talk to your children about pitching in with the housework and laundry. Good luck and I hope we hear from you in chat!
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I need to remember some of this as I have been having a harder time than usual.
