Anyone else dealing with COPD?

I was recently DX with COPD, Chronic Obstructive Pulminary Disiese. ( I know I spelt some of that wrong)

It explains a lot of what I was dealing with for the past two years in the winters when I thought I had the "flu". My last excerbation lasted 11 days and sent me to the ER where I found out what was going on. The doc there told me I had COPD and gave me breathing treatments which made me feel so much better at the time.

However, this is really throwing me a loop as it's adding to my depression badly. My limits, my lack of energy cause I'm not getting enough oxygen, the leg cramps, and the prognosis is really throwing me for a loop. I've done massive amounts of research on the condition, and while I can take steps to slow it down, there is no cure. I know I need to quit smoking, but when I'm sitting home and I'm all alone and there is nothing else to do, I just seem to smoke more. I've developed the attitude lately, quitting will only add 2-5 years and then I will be on oxygen anyway so why prolong the inevitable??? It's going to kill me anyway.

I'm scared to death I'm going to become a burden to my daughter, She doesn't seem to understand there is no cure and it's just going to get worse. She won't discuss my advanced directives at all with me, I refuse to be put on machines. I've thought of moving to Oregon where it's legal for assisted death, but don't think I can deal with the cold. I live alone and in another state from her, and really don't want to go back to Fla as there are to many triggers for me with substance abuse there.

I just don't feel like I have a purpose any more...why am I here? Meds can help the symptoms, but I don't want to be that person carrying around an oxygen tank when I'm 55, and it's inevitable. There's no getting around it. My social life is non-exsistent anymore as I can't keep up with others, and am having to constantly rest. So I just don't bother anymore. Even walking my dog is getting to be a chore and I feel so sorry for her as I don't play with her like I used to. I feel like that commercial for depression where the doggie is just laying there looking so sad cause I won't play with her anymore..

I just don't know how to deal with all these issues alone. The support system here in New Orleans is almost zilch. But at least here on a good day I CAN go walk the Quarter and people watch. I'm waiting on disibility, and it's really keeping my life in limbo. I have landlord issues with my house holding mold and critters and she won't do anything. Hell, I don't even have a stove or heat here yet and I've been waiting on THAT for two months now. I can't move until I get disibilty, IF I get it the first time, and if I don't I could very well end up homeless at this point.

It's all just sooooo very overwhelming, and I'm so tired of being told by long distance friends.. " well think of the other person dealing with cancer, tumors, or such" I understand that...but at least THEY have a chance to fight if and put it in remission or even cure it. I don't, and they just don't get it.

Can anyone relate or offer suggestions to help me deal with a condition that will eventually kill me anyway? I really have the attitude of why bother right now and I know logically that's not good either. Where do people get the gumption to " keep on keeping on" even in the face of a terminal illness? Cause I sure can't find it.

I know I cannot understand personally, but I had a roommate back a few years ago for two years straight. I cannot remember the disease name for the life of me (it is very rare and she actually made it into medical textbooks because of it) but the disease will eventually kill her. She's 30 years old, and wasn't expected to live this long - now she's living day by day... but likely won't make it for too much longer. On my side of things, it was scary when she was constantly being admitted into hospitals because I'd be told that she may not be making it out - in the two years, she had numerous surgeries and quite a few different infections - including numerous blood infections (which can be quite easily fatal if not dealt with properly or quickly). On top of this, she had a couple other conditions and depression (which is pretty understandable). Same as you, her condition cannot be cured, and can barely be slowed down - with medication that is actually toxic and could kill her before the disease does! (Unfortunately that's what happens with some medications... the treatment could be worse than the disease at times)

She kept on living and tried to make the best of the time she's been given, for better or for worse. Yes, it does suck and NO nobody can understand completely what you're going through. But you shouldn't give up, even if there isn't a cure -- you still have a life to live and a contribution to make to society and are still a joy in the lives of those around you. Sometimes that is all we have.

I know I sound hopelessly optimistic and I may sound condescending (I'm trying not to be, but apparently I do sometimes) ... but I think you're a wonderful person whose life has positively impacted a lot of people's here and in your real life offline. We are touched by the fact that you're continuing to live and struggle with what you've got - and aren't laying down and giving up hope.

From my experiences with a permanent disability which cannot be cured... yes, I have the days of "why bother doing physio, why bother going to the doctor, why bother going for this procedure or that procedure or for this test or that test... It isn't going to change anything, I'm not going to be magically cured, and nothing is going to get better!"

During those days, I find something enjoyable to do. Even something simple. If you're chronically depressed over your conditions (understandable) - are you, or have you considered, trying antidepressants or therapy? I know you said you're waiting to see if you'll get on disability or not, but it's worth a shot if it's something you've not already done.

As for your current living conditions - I don't think that where you're currently living is good for you emotionally or physically in my opinion. Perhaps also a change of scenery, where you could also qualify for disability would be a better alternative? I don't know anything about US geography, but there has got to be a better place for you to be living that could make you happier. If not, you could always move to Canada. We may have wintertime a lot of the year, but we have pretty good social assistance.

For emotional support, is there any sort of support group you've found online or in person with others who are terminally ill, or struggle with a disease(s) such as your own? Sometimes having support from others in more similar situations can really help.

I'm sorry I'm not much help, but I wanted to let you know I care about you even if I don't truly understand what you're going through.

((((((((((((((IrishMe))))))))))) I'm so sorry you are struggling. I'm not dealing with COPD, but I do deal with other issues that have made my depression worse at times.

I know life can feel pretty bleak at times, but I do think that while we are here, we can make a difference in someone's life. Sometimes it might only be one person, but it's a difference that might not happen without us.

Do you have a therapist to help you with this? Sometimes, even when we know the end result is not what we want, talking through things with one another can help us. We are all going to die one day, but it's what we do when we are alive that matters, in my opinion.

I'm so sorry you are struggling with all of this. Would you consider going on antidepressants and/or therapy or anything to help? While it won't make you live any longer, maybe it could help you emotionally while you are trying to come to terms and deal with everything?

Please take gentle care and please lean on us if you can. We care about you.

Thank you so much ladies!!!

I appreciate the support being alone and am very grateful for this site.

As I stated before, the support system here in New Orleans is almost zilch. They are still in major recovery stage here and are still in the process of opening medical centers around here. As far as mental health centers go, they are almost non-exsisent. Hopefully, if and when I get the SSI and medicaid I can start going to a private doc and get a little help there.

I am unable to take meds for my depression as there seems to be a common denominator in them that I am deathly allergic to and have been fighting the depression on sheer will power. It's not easy and when I go into a deep episode it takes me weeks to come out of it. My current living situation isn't helping either...lol

I do know I have got to find a "purpose" to keep on, and right now that seems to be one of my biggest issues. I've tried looking online for support of COPD but most that have the condition are over 60 and with me being in my 40's I just can't relate to most of them. It's one of the reasons I like coming here!! There are a variety of us and I get the feeling more that will help me being rather young. One of the factors I know I have to find out is if mine is genetic due to my age. BUT, again it all depends on the SSI and when I get to seek reg medical care.

It's just hard dealing with it all at once, I've been battleing the depression for years anyway, and this is just compounding the problem. I have another post in the depression forums to try and find support due to all the death I've already dealt with in my immed family for the past two years...and this just seems like " dear lord what else could possibly go wrong in my life" ?

<big sigh> Thanks again ladies...just being able to talk to someone who doesnt' tell me to think of someone worse off than me means a lot. I just can't believe some peoples train of thought sometimes when you tell them what's going on with yourself. I know they mean well..but right now, that doesn't seem to matter to me...in fact that's half my problem...I just came seem to find the gumption to care about much of anything lately. Least of all myself.

(((((((((((((((((((((((((((IrishMe)))))))))))))))))))))))))) I am so sorry you are going through so much. I hope that you start to reciece some assistance soon. Is there any source to get some relief until that happens? Maybe an organization that helps those with disabilities? It sounds like you are trying very hard. Would it help to look at other places that may have more aid available? Know I care and am thinking of you.

BB

Oh dear woman I definitely identify with that -- there are a lot of ignorant and inconsiderate people out there, and even if they're TRYING to help by saying something like that - it really doesn't! It just devalues what YOURE going through!!

I'm sorry about all the recent losses in your family, compounding issues is not something fun nor enjoyable. Life throws us far too many punches sometimes.

Here's to hoping that your SSI comes in for you sooner rather than later -- because getting help NOW is rather important. Sucks that you're allergic to something in antidepressants, that's not fun at all!! I'm rather fortunate that my most severe allergy is latex and can usually be avoided -- not necessarily so with other allergies out there!

Having "sheer willpower" to overcome depression on top of all the other crap is hard... And it also sucks that your only support network is full of older people. Not that I'm knocking older people, but when you're at different points in your life it means your perspectives are drastically different and not necessarily are you ever going to see "eye to eye" about life issuess.

I wish I could be of more help and wisdom, all I can say is that I'm here if you ever want to chat. I can listen.

IrishMe

I don't have COPD, but I have taken care of several people in later stages of the disease. I was a CNA at that time ~ one of the RN's was a 40 something year old man in the early stages of COPD. He still smoked cigarettes, but carried an inhaler and coughed very frequently. He had somehow accepted his illness, and certainly knew what people in later stages were experiencing.

I wish that I had some words of wisdom or hope to share with you I do understand how devastated and alone you must feel. I've been stuck in deep depression a few times and unfortunately illness follows me. It is lonely. And it stinks! My thoughts are with you....Take care

Shez

Christina..

What you say is oh so true!! While I do appreciate support groups for COPD most of the people there really are in their 60's or older. It's great for learning what to expect, but then again...not so good. I'm not sure I'm ready to handle having to use oxygen 24/7 just to get dressed or take a shower. I've seriously thought of moving to Oregon!!! I'm scared to death of becoming a burden to my only daughter.

I just can't handle the frustration lately of not being able to do normal things...I try to get the energy to sweep and mop the floors..but can only end up sweeping. I want to go out the Quarter, but by the time I get dressed I'm to exhauseted to go...I want to take a shower and shave all those lovely parts we are supposed to and by the time I'm done with that..I can't wash my hair. <big sigh> When you throw that on top of the lack of energy depression brings...well.....all I end up doing for the most part is sitting in my one room at the computer, with unpacked boxes still sitting around me. I can't even hang pictures on my walls in my new place. I've been here for three months now and STILL have only unpacked things I use everyday simply because I have the attitude of "why bother".

Sheer will power comes over me when I just can't stand the walls closing in anymore and know that I'd be even worse if I don't force myself to do something. I tried yesterday to rework a wreath and by the time I had gotten the old lights off, I was exhausted and ended up taking a 3 hour nap!! So much for putting Christmas up BEFORE Christmas gets here...sheesh.

It's more frustrating for me as I've been in the construction industry for more than 12 years and it was just two years ago that I was lifing 50 lbs of concrete like it was nothing. Or climbing onto a third story roof to paint...Now I'm lucky if I can carry a bag of groceries in the house without stopping to rest. I know I can slow the progression...but again I think Why bother? I'm really not sure I want to live like this longer than I need to...why add another 2 yrs to the misery? I wish I new where others got their inner strength when dealing with something terminal. You hear stories all the time of how they "got up and went to earn the noble prize"....Where does it come from? I wish I knew cause I just don't seem to have it. And at my age, my brain says I'm young and single in the heart of New Orleans!! Why can't I go out and enjoy it? A lot of blame comes with COPD...I coulda..shoulda...woulda...and I'm working on that thru learning about my condition.

Shezbut.....I've tried to quit smoking several times and even tried the Chantix..again it has the same ingredient as anti depressents and makes my tounge and throat swell to where I feel like I'm swallowing my toungue...scary stuff. The thing about the meds and inhalers is that while your taking them it hides all the outer symptoms so that when you smoke you feel like you really don't have a problem...it becomes a viscious cycle until you try to do something that requires energy to remind you. Sad I know...I'm doing better, I was up to 2 packs a day and now have it back down to about half. Unless it's a bad day with the depression, then I'm back to smoking like a fiend. I've been checking out the boards here for help with that.

If your friend was smoking and using inhalers and coughing all the time, that's a llittle more than early stages...I know when I was last in the ER, and by my breathing test last week I'm already in stage III. One more to go for me...<another big sigh>

I just wish I could find a purpose to " keep on keeping on"....find that inner strength that others seem to have when faced with something like this. I called my doc yesterday to make an appt and discuss if there is ANYTHING new that might help the depression for me...maybe if I can get a grip on that to start, things might have a better perspective.

Wow...this got longwinded!! I'm sorry...I'm just sooo frustrated with myself after trying to do things yesterday

(((IrishMe)))

Yikes, angioedema is very scary! I'm sorry that everything you've tried has ingredients causing that major allergic reaction.

The oxygen tank would allow you to do much more. And you do need it. People can live happily for years on oxygen. Cutting down to half-pack/day is great! Congratulations!! Try to replace your smoking habit with a new habit that you enjoy. Collecting seashells? Walks through the French Quarter? Joining a social group in your area? There are lots of possibilities out there!

Exercise is noted to release endorphins, which make us feel good. So, I'd recommend an exercise that you already enjoy doing and one that can be done with your oxygen tank. You may need to remove yourself from smokers in your life, until you've fully committed yourself to become a non-smoker. That can take some time ~ and there may be slip-ups. That's okay. Having non-smoking friend support can help get you out of the habit more easily too.

IrishMe You're in my thoughts! Btw, thanks for the info on that friend of mine

Shez

I haven't smoked in nearly 30 years but, have developed COPD. I use the inhailer as needed and do 2 nebulizer treatment everyday. I also use ADVAIR 250/50 1X a day.
I irrigate my nostrils with salt water 2x a day and try to keep the airways clear. I'm 53 and have 87% lung capacity. It is only going to get worse and eventually kill me but, hey I could get hit with a truck tomorrow or, die another way. I refuse to let this get me down. My Doctor says maybe 15 years or longer, depends on how I take care of myself. I am going to fight this with everything in me.

My cousin died at 49 last week, he had brain cancer. I never heard him complain. he was a good man but, he had a lousey wife. She left him when he was dx with it. Said she didn't want to be living with a dying man.

I can retire in 6 1/2 years and that is what I will do. I'm going to live life to the fullest and do as much as I can. The best advice I can give you is to exersize everyday and quit smoking. If I have to drag around an oxygen tank then so be it but, I will not let this condition keep me from living life to the fullest.

We are all going to die, it is just a matter of how and when, at least i know how barring an unexpected event.

Eric

your pulmonary drs should also be telling you guys to exercise your lungs to help keep them expanded more. it does help alot. don't go by what alot of the research online says please! my grandfather had it for as long as I could remember. I would say in his late 40's and he lived to be 76 or so. he still smoked probably up until he was in his early 70;s

bebop;
I agree with what you said.....I bought the John Hopkins White Paper report on COPD. It is packed with a lot of good information. The one treatment that they stress the most is exersize, it is important to expand the lungs as much as possible. Sitting erect, walking properly, not just slaking along. Taking beep breaths for 5 minutes 5-6 times a day, eating smaller meals 6 small instead of 3 large. Never have a stuffed feeling, it affects your diaphram and ability to breath. Keep the nostrils clean, irrigate them everyday with saline solution.

Always have your rescue inhaler with you and get to a hospital quickly when the inhaler dosen't work. Avoid smoke, pollution and noxious odors as much as possible.

COPD is not an immediate death sentence. It can be halted where it is and if not it can be treated to slow it down.

Best wishes to all and live well through better breathing.

Eric