42 and strong willed

By erinbhou1980

1 min read

I was diagnosed three months ago with COPD emphysema. I have other chronic conditions as well but this one I consider my most difficult.

About me

I'm 42 and the Dr's monitors me very closely. My PCP and pulmonary dr have helped me a lot. First, I started on oxygen 24 hours a day...the thing I'm discovering about oxygen therapy is it's like my life vest or security blanket (I don't know if I'm the only one that feels that way) but it helps. He also put me on two inhalers and two medicines and nebulizer treatments to do 2-4 times a day.

I push through

I never thought this would be my future but as with anything in my life I keep on going forward and remain positive. I get down and anxious at times but for me, this is tied up to my emotions as well. I have trouble doing things that I used to do easier and some things I can't do anymore. Showering is hard I gasp a lot and get almost choked with the steam. But I push through. I get dizzy and sometimes even pee because I can't catch my breath. But I push through. I get headaches and inhaler thrush but I push through. I know this is not a pretty disease but I don't and will not let my anxiety lead me done a pessimistic path.

Staying positive

I live each moment as now and deal with what has been dealt to me. I'm not going to lie this disease is very hard and unstable and I have my moments that I feel awful and cry but I never ever let this define who I am. I just deal with it the best way I know-how. Thank you for reading my story. I am hoping someone can relate. I'm hoping I may friend someone who understands. Have a great day to everyone.

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Jbyrd Member
 erinbhou1980, reading your story is like reading my own. You are not alone. I can only speak for myself, I'm hear if you need a shoulder. I can only suggest that doing a lot a reading here with help, it helped me.
Leon Lebowitz, RRT Member
<inline-mention username="erinbhou1980" user-id="4581867"/> Hi erin, and thanks for sharing your story here with the community. You have certainly come to the right place, as we are all about all things COPD and COPD related! Reading all you shared with us, reminded me of others who have shared similar sentiments and experiences here with the community. You are absolutely not alone here. I am hopeful others will join in, once they're read your story (much as <inline-mention username="Jbyrd" user-id="4531471"/>, has already done (thanks jbyrd!). You bring up many aspects and complications that can be associated with this disease. We actually have a wealth of material published, right here on <a href='http://COPD.net' target='_blank'>COPD.net</a>, which focuses on many of those very topics. I will give you some time to navigate around and familiarize yourself with the community website. Should you need any guidance or reference material, please do check back and let me or any other moderator / team member know, and we will be happy to show the way. (I did not want to overwhelm you with so many articles in my first conversation with you!). Please know, you are always welcome here! All the best, Leon (site moderator <a href='http://COPD.net' target='_blank'>COPD.net</a>)
1. erinbhou1980 Member
 <inline-mention username="Leon Lebowitz, BA, RRT" user-id="2445532"/> Thank you so much Leon.I feel that everyone understands here and that makes me comfortable.I have so many questions that only someone going through this can understand.I just am thankful that I reached out and got some wonderful replies.
2. Leon Lebowitz, RRT Member
 <inline-mention username="erinbhou1980" user-id="4581867"/> Hi erin - we, too, are so glad that you reached out and also became a member of our online community. Glad to hear you have a whole bunch of questions. Please feel free to ask as many as you want to. We will do our best to provide you with the answers! Warmly, Leon (site moderator <a href='http://COPD.net' target='_blank'>COPD.net</a>)
kloker Member
<inline-mention username="erinbhou1980" user-id="4581867"/> - Welcome! You are most definitely not alone.\ here. There are a bunch of us here in the same boat, from all over the world. I'm in Texas. The best I can offer you is this - the more I learn about every aspect of this disease, the better equipped I am to deal with fear and anxiety, and the better I am able to communicate with my doctors, which makes a big difference in my comfort zone. I keep accurate records of my day-to-day meds, readings, and condition, to help my doctors and to help me retain a better picture of how I'm doing. The more I participate, the better care I get. It works. I ask a lot of questions here and post new stuff I learn. So, join the discussions. There are a lot of good folks here with highly useful knowledge.
1. Leon Lebowitz, RRT Member
 <inline-mention username="kloker" user-id="4235094"/> Hi kloker, and thanks for joining in the conversation here. We always appreciate you lending your own support and encouragement directed towards fellow community members. We also value you sharing your own personal experience managing this disease wit us. It does sound like you keep a detailed record of your daily activities and the specifics of exactly what is going on with your treatment and medications. As you said (and I concur), this serves you well and can all contribute positively to your well being. I know others in the community have found it helpful to do what you are doing and calling it 'journaling', or keeping a journal. We even have an article published about that aspect of disease management, authored by our own Barbara Moore and the late Carol Kirker. For the convenience of our readers, here is a link to that material: https://copd.net/search?s=journal. Wishing you the best, kloker! Leon (site moderator <a href='http://COPD.net' target='_blank'>COPD.net</a>)
Lynida Jo Harper, MPA, BSRT, RRT, AE-C Moderator
<inline-mention username="erinbhou1980" user-id="4581867"/> Hi Erin - As many have already commented, you've come to the right place to find support and information about COPD. I'm sure part of you is still reeling from the diagnosis, which is completely normal. But you have an amazing attitude and that will serve you well. It sounds like you've been started on a good regimen of treatment. That may have to be adjusted as you discover what works and what doesn't for you. Please ask any questions that come to mind and always feel free to vent a little when you need to. You can count on the fact that all of us here on this site will be empathetic and more than willing to listen. Best, Lyn (site moderator <a href='http://COPD.net' target='_blank'>COPD.net</a>)
whirledpeas Member
<inline-mention username="erinbhou1980" user-id="4581867"/> I think you are doing all the right things, mainly managing your positive attitude. Someone on this site said something profound that has always helped me. She said, "None of us know what's going to happen in the next five minutes, so it makes sense to just live your life the best way you know how," That is really a paraphrase, but I don't think Carol, or Janet or Barbara would mind. She's right. We could all get run over by a bus tomorrow morning. Why waste time worrying and mourning over our bad luck? It is a difficult condition, but it is also very manageable. I am a 73-year-old woman. I was diagnosed at least ten years ago. I normally use oxygen just for sleeping. I have stage 4 COPD. When I think about what others have to deal with, I consider myself lucky. Do as much as you can, and remember what I used to tell my kids: Everybody has something to deal with. Sounds like you are doing a great job of dealing with the (pardon the joke) hand you were dealt. This is a great, welcoming, knowledgeable group of friends.
erinbhou1980 Member
I have so many questions about this <a href='http://disease.Questions' target='_blank' rel='noopener noreferrer ugc'>disease.Questions</a> that only someone who is going through it too would <a href='http://understand.My' target='_blank' rel='noopener noreferrer ugc'>understand.My</a> dr and husband can sympathize but not <a href='http://relate.Im' target='_blank' rel='noopener noreferrer ugc'>relate.Im</a> glad about that but it leaves me sometimes alone to understand and think.I think about long term <a href='http://affects.The' target='_blank' rel='noopener noreferrer ugc'>affects.The</a> denial I feel sometimes and <a href='http://confusion.Ill' target='_blank' rel='noopener noreferrer ugc'>confusion.Ill</a> read some articles on here though <a href='http://too.Do' target='_blank' rel='noopener noreferrer ugc'>too.Do</a> you have any tips? Thank you so much for responding too
1. bin there and dunit Member
 <inline-mention username="erinbhou1980" user-id="4581867"/> I think LROgal has the right idea; just be determined to live live as well as you can. Think of the next 12 months - not the next 20 years and enjoy them. Do check your diet (I hate fat as a cooking medium or attached to food - that's me!) and do exercise as much as you can; 15 years after diagnosis I started going to the gym very early three times a week and for the rest of the day feel fine but am a bit down next day so, for me, exercise is a booster. (three years ago I could just walk 20 yards - now I can do a mile and a half - which is boring!). Be religious about daily routine - work out which suits your system best and stick to it (example a big meal might make you feel down so have two at different times instead.). Discuss your medication with your doctor and perhaps experiment- it took several years to work out what combination worked best for me; manufacture of one pill has been stopped so it has taken about 8 months to get the dosage of the alternative right. It seems site policy not to suggest specific treatment so just check out University of California and microbiome on Youtube - works wonders for me on top of standard doctors fare BUT do discuss with your doctor.. Best wishes
Ellie114 Member
I understand how you feel having copd <a href='http://myself.Feel' target='_blank' rel='noopener noreferrer ugc'>myself.Feel</a> better praying for you
LROgal Member
I completely relate. I am trying so hard not to be defined by this disease. I am still working, but that's only because my job allows me to sit in a chair on my computer. I am grateful for that. But the variance in my breathing is shocking. Sat and Sunday I was better, exercised and was able to walk about without oxygen as I did always, only 3 months ago. But monday and tues my shortness of breath is terrible even with oxygeb. My oximeter will read 94-97 with oxygen full time yet that doesn't really change the shortness of breath. Of course it helps the absolute breathlessness of your O2 running in the 80's but I don't understand why my shortness of breath is so intense all of a sudden. I am at the end of bronchitis but I was as well sunday. I am too weak to exercise yet it seems to be the only thing that helps. Ugh. I'm in a quandry
1. LROgal Member
 <inline-mention username="Mary Ellen" user-id="2453113"/> awww I totally understand. Maybe new meds on the horizon 
2. Melissa.Arnold Community Admin
 <inline-mention username="Mary Ellen" user-id="2453113"/> Don't be so hard on yourself. Nicotine addiction is so tough to let go of -- in fact I have heard that nicotine is tougher to quit than heroin. So it's not surprising that you still have cravings ... it's nothing to be ashamed of. Keep doing the best you can and know that we are here to support you! -Melissa, <a href='http://copd.net' target='_blank'>copd.net</a> team
irishmusic Member
I and many others have found that showering with the door slightly open helps. It gives a feeling of not being confined and also lets some steam out.
Mary Ellen Member
They've given me 9 months. I wonder each day is today the day and want to think it isn't but then I get nervous and frustrated with every thing and everyone . I hate what I've dont to my body. Tired when someone asks how you are , I just say tired ... 
1. Melissa.Arnold Community Admin
 <inline-mention username="Mary Ellen" user-id="2453113"/> Oh Mary, my heart goes out to you! I admittedly raise my eyebrows at doctors who assign a time limit to life with COPD. Each person with this disease is unique and progresses at different rates -- we have people here on this site who have lived for many years and even decades with COPD. My own grandmother went on hospice for COPD and then lived for another year and a half. We spent that time watching movies and making wonderful memories together. It's not always easy, but perspective is so important. Even the most skilled doctor can't predict when our time will come. We have to take one day at a time. Please don't give up hope. You may not be able to change the past, but from here on you can make the most of the present. Sending hugs, please come and talk with us whenever you want, okay? -Melissa, <a href='http://copd.net' target='_blank'>copd.net</a> team
PaulATX Member
<inline-mention username="erinbhou1980" user-id="4581867"/> <inline-mention username="Ellie114" user-id="4656124"/> <inline-mention username="Jbyrd" user-id="4531471"/> I can relate and sympathize with all you said. This site is my go to place to not feel alone. To read stories and find some comfort knowing others are coping the best they can with this COPD monster. To be able to vent in a non judgmental place. To motivate me to keep my battle going for another 2 weeks to see the birth of my first grandson, Leif. Not knowing how I will be able to visit but somehow I will. I'm on O2 24/7, in hospice and at times cry. I do what little exercises I can to move my legs. This is where i feel safe to admit at times i cry over this or that i wet myself cause i couldn't breath just to reach over for the male urinal. You are not alone, feel free to vent to me whenever you want. I'm typing this from my bed wondering when I will get motivated to spend the hour it takes me to get out of it. But I will. Give yourself praise for any little accomplishments because you deserve it. ALL my best wishes to you. Feel free to contact me if you need to vent, share , or just to chat with a COPD friend .
1. Leon Lebowitz, RRT Member
 <inline-mention username="PaulATX" user-id="6704474"/> Hi again, Paul - look at you! Still lending your own level of support and encouragement to our community members, in spite of everything you are dealing with yourself. You are truly selfless!! You know we are all here pulling for you on the upcoming due date for your new grandchild. Hang in there! Leon (site moderator <a href='http://COPD.net' target='_blank'>COPD.net</a>)
2. Jill.Brodie Community Admin
 Congratulations @PaulATX!!! Enjoy every second. Jill, <a href='http://COPD.net' target='_blank'>COPD.net</a>, team member
CommunityMember15c637 Member
Keep that positive attitude. Practice breathing exercises when you can, sitting, standing, or lying down. Don't let dystrophy add to your woes if you can help it. Any kind of physical and mental exercise is better then none, and it does pay off in the long run. Here's wishing you a better day today then yesterday.
Barbara Moore Moderator
erinbhou1980, Your attitude is great and that is how we get it done. Barbara Moore (Moderator)

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