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kellie3
Member

Anger and new physical changes

I have been struggling with anger, depression. I am not even sure if it is depression, I can usually have a "chat" with myself and talk myself out of the "funk" mood. However the anger is very much real and I need to let it go somehow.

I am lashing out at those around me. I don't even realize that I am doing it. They are gently telling me I need to lighten up a bit. It just seems to come out of nowhere.

I have noticed the last month or so when I eat I find it hard to breath. I don't eat fast, or even large amounts. I also have had burning. Terrible heart burn, even without eating anything spicy.
I went shopping for bra's last week and to my surprise I couldn't fit into my regular bra size. Not Even Close! I ended up not buying any until I could figure out what is going on? Honestly I went up 2 sizes and still could not fit "around" me.

I started looking around online and found these 2 articles... (has anyone else experienced this problem?~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

From "personal experiences" of the LVRS website.
http://www.emphysema.net/lvrs.html

I had become very "barrel-chested" and having to wear "bra extenders". Within two days of the surgery, my rib cage had decreased enough that I could feel a difference. By the time I was able to wear a bra, I no longer needed the "extenders". Before the surgery, my lungs were so hyperinflated, eating an apple would fill me up to the point that I was uncomfortable and having difficulty breathing. After I got out of the hospital, we went out to eat and I had a hamberger and fries and desert!!!! And I COULD BREATHE!!!!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~


http://www.emphysema.net/patient_stories.htm#Ken_Scott1

Physical Changes: Your lungs become over-inflated and enlarged, making breathing even harder. The pressure from the enlarged lungs presses outward on the rib cage, causing continuous soreness and pain, called the 'Barrel Chested' look.
The lungs press downward on the diaphragm causing it to be flattened, instead of dome shaped; preventing it's helping you breathe. This puts continuous pressure on your stomach, digestive tract and bladder also making breathing difficult. You now have the 'Pot Belly' look. You learn from support groups and rehab how to breathe using your chest muscles, called diaphragmatic breathing (if your lucky enough to have access to these aids). If you have to take steroids to help your lungs, everything changes. Steroids are the bad drug-good drug medicine. While helping your lungs it is taking it's toll on the rest of your body; bones, skin, kidneys and adrenal glands to name a few. It also gives you a rounded puffy face called 'Moon Faced' and the list goes on. Some COPD patients develop congestive heart failure. That pretty much explains itself.
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12 Replies

I haven't experienced that I don't think. But I've gained over 50 pounds since I quit smoking so I don't really know for sure. I always gain a ton in my chest area. But I do keep getting pains in my chest that make it hard to breathe. My doctor says it's because of the weight gain, but I have been this heavy before without this sort of pain, so I just don't think she is right. I'm going to ask her if she can just check into it further to be sure. Because every time I get that feeling, and I take a puff of my inhaler, or sit in a way that my airway or lungs will have more space, I'm able to breathe much better.

Kelli, do you have any sort of insurance now? Or are you getting anywhere with Social Security? Are you getting help with doctor bills or anything like that? You really do need to talk to your doctor about how you are feeling. If you're family and friends are talking to you about your "funk", than it may not just be a "funk" anymore. There really isn't anything wrong with being treated for depression. I am one of those people who used to be able to talk myself out of my moods too, but after awhile, especially with all you have had to deal with, a person just can handle so much ya know. I have been being treated for depression since just after I found out about my emphysema. I just couldn't handle too much more without help. It's been a Godsend for me.
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spunkie
Member

Kellie you have me scared did your doctor tell you that you need the LVRS surgery???????


Now the Physical Changes that emphysema gives are no different than that of asthma... I had the Barrel Chested look when I was still a child from my asthma and when my asthma got worse at age 42 and I was on lots of Steroids.... oh did I have all the problems you listed above I had the hump on the back of my neck and the moon face bad.. gained over 120 lbs (now I have lossed 116 from that time of weigh gain) they realized that it was time to cut back the steroids before I kicked the bucket from all of that and we had to reduce them and add lots of other meds.

I am still on steroids because of having asthma, emphysema, chronic bronchitis and copd but I just continue to pray that they know the correct balance of Steroids and meds to keep me in the best of health but I do have a barreled chest and I would say my chest size has enlarged from all things the weight gain and changes the illness does to the shape of our chest. I try today to not worry like I did at 42 because now I realize all that time I wasted with worry that.. I should have been enjoying my life.... try to set yourself free just a little I think this is what may be causing you to have your "funk" moods. God Bless I hope this helps you (((HUGS)))
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Sylvia_Deitz
Member

Kellie, I'm so sorry to hear about your depression! Sometimes I get really depressed, too, especially after I heard that emphysema can progressively get worse, just not as fast as if we were still smoking. Lately, I've been feeling like mine has gotten worse. I blamed it on the weather, but I just don't know. I'm getting more tired when I go for my walk and having those really bad pains in my chest when I exert myself very much...Oh, sorry, this is supposed to be about you! Anyway, about the bra sizes....yes, I went up a full 2 inches, but I figured it was from the 8 lbs. I gained back. I originally gained 10 lbs., then went on a diet and lost 8, but lately I've been gaining it back. I think I've gained back 5 or 6 of those I lost, but my bra is so much bigger. When I'm home I just don't wear one, because I can't stand the pressure on my chest. See? You're not alone in this.
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kellie3
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I am not sure if I have said this before, but Thank you all so much. It is so nice talking to people who understand what I am going through.

Barb, yes I just last week was given a Provisional Acceptance of Social Security. She said what that means is for 6 months I have approval and benefits from them. She said once the provisional acceptance is given she has never seen it revoked. She said she was very surprised to see it come so soon, that usually an acceptance takes anywhere from 3 months to a year. I am not complaining.

Monday (tomorrow) I am going down to apply for medicaid/medicare and state health assistance. I am not sure which ones do what??? But she said they would help me get the best benefits available to me.
I know this is most likely depression and it would be understandable. About 8 years ago after my 2nd back sugery and spinal cord implant the doctors put me on Paxil for depression. I swear that was the worse stuff ever! I was one of those who in my whole life never ever thought of sucicide until I got on that medication. I quit taking it and never took anymore. So, I am kind of afraid to take anything for it. I keep thinking that I should be able to handle this and realize that it's ok to be mad at the disease just not myself and everyone around me.

Spunkie, After I get the medical coverage then I need to talk to my doctor again. I kind of put him off and told him I wanted to wait for anything until I could get coverage. He talked about LVRS, but if I understood him correctly it would be down the road a bit. He did want to have me tested for oxygen something. A sleep test I think.
And, he wanted to do a stress test to check my heart rate. Those I will be able to do once I have insurance of some kind. As for steriods I am staying away from them until there is no other choice. I think my medication may have some in them. But, I have had prednisone before for my back injury and I hated it!

Sylvia, I am so sorry to hear about your breathing getting worse. I admired you so much for excercising as consistantly as you were and for taking such good care of yourself. This disease just is terrible! I hate seeing what it does to people. Yes, it does progress unfortunatley. Sooner or later it will catch up with us all. We just have to be strong.
If you ever want to lean on someone Sylvia come grab me. I am not always "visable" but usually not far from this site. For some reason, even on my worse days this place makes me feel connected to those who understand me and don't think I am crazy for what I am feeling.

I went last Friday to Curves. I had been walking but with the smoke in the air and the cold weather sinking in I thought this would be a great thing for me to do. So I went to pay my membership fees and get started.
During the application process I had to tell them I had severe emphysema/copd and back problems. After the forms were filled out and my money was taken the manager took me from machine to machine to show me how they all worked. For those of you not familiar with Curves there are 9 stations (or machines) with resting between each one. You work on each one 3 minutes then rest then move to the next one. The more advanced people during the "resting" stations will jog in place.
On the 5th station or machine they have a stair stepper with a heart rate thingy on the handle bars that tells you how effective your working.
The poor manager puts me on the machine and waits for the monitor to come on. (I forgot to mention there was a nurse working out right behind me) The monitor blinks 152 and she yells STOP to me then asks the nurse named Mary to take my pulse, that this must be wrong) Mary takes my pulse and it's 147.
I had now become a spectacle. I tell the manager that I had been pretty much immoble for the last 8 or 9 years due to back problems and breathing problems. That I am sure some of this was due to my emphysema and also being out of shape.
Anyway to make a long story short she suggested after giving back my money that I just use a guest pass for a week and see how I did.
I am determined to show them I am not a quitter, and that I can get better. Before I left I made sure to tell Mary thank you and to apologize for interupting her workout. Then I asked the Curves manager if having me there would make her or her staff uncomfortable, she answered no. But I honestly think I worried her to death.
I never thought of myself as so much different than anyone else. Yes, I have gained weight but not so very much. I am 5'4" and weigh 198. After I left there I felt like those people who you see being hauled out of their houses with cranes.
I am sure I am imagining some of this, but go figure.... I would be the one to join a gym and have a nurse following me around. LOL

So, I will let you know how the new work out goes. I am so afraid that I will go in and have a room full of people staring at me waiting for me to drop out. Slow and steady wins the race.

I have to do something to releive this pressure and burning in my abdomen and chest. And, it would be great to be able to buy new bra's before I start popping outta the ones I have.

I thank you all so much. It really does help to just come here and get these feelings off my chest. I try and talk to my family about it but I just don't think they get it. Or maybe they do and I am not giving them the benefit of the doubt. I just think sometimes that if I had a broken arm instead of some invisable disease they would get the fact I hurt and am worried.
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spunkie
Member

Kellie you write so well it is just like you are in the room. I am going to tell you that you hit the nail on the head IF YOU HAD A BROKEN ARM instead of some invisable disease they would get the fact you hurt and are worried.


This has been the way I felt as a child with asthma and I feel so sorry for my grandson who has asthma because children do not get it adults do not get it until you have to be laid out on a stretcher!!!!!!!!!!!!

It is terrible we live in a world that has to see a illness to understand it. Take cancer my 15 year old son had cancer and was treated at JHU 2 hours aways from our home. His doctor told him after he lost his hair that people would understand what he was going thru and he was right how terrible...


I also think family members are afraid of our illness and do not want to see it. If they see it then it is all to real and then they understand what they have to lose.

Kellie I am so glad you will now be able to get all the test you need and find out if he thinks you are so bad now that you need the LVRS that scares me. Maybe after you have all the test and they know exactly how well you are exhaling air they will be able to treat you better and not need any type of surgery. I sure hope it worries me.


Kellie About Curves thanks so much for sharing your story I am sad that you felt like a spectacle. That sounds like a nice place and can't you do a little less on each machine or something. It sounds to me like you would enjoy it so much. I hope it works out let us know.


Sylvia I am sorry it is getting harder for you to walk and that you are having pains in your chest. You be sure to check this out with your doctor if it gets worse. I am sure the cold weather coming is going to be hard on all of us.


Depression hey lets face it who wouldn't be depressed this is a terrible illness. We are limited in the things we can do and others looking at us do not understand why we can't do certain things.

My husband is the only one that knows when I hurt and that has took him years. My children and grandchildren love me but never see me as sick unless I am gasping for air then they realize it..

Kellie, Barb and Sylvia I wish I could say something that would make us feel better about this terrible illness we have but I have nothing good to say about it ... IT SUCKS !!!!!!!!!!!
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kellie3
Member

I went back to Curves today. They must have left notes for the staff there all about me. The staff lady followed me around to each station making sure I was alright. I did just fine. Instead of doing 3 rotations like most people I only did 2 and my rest periods between each one was about twice what everyone elses was.
But the point is............. I WENT BACK! I didn't let it beat me. I am determined to be better. I cannot regrow lung tissue, and I can't undo the damage that is there, but I can lose some weight to help me breath better.
It just felt good to go back. My goal is 5 days a week. Even if 3 of those days I just stretch and use a few machines ... I am determined.

I have had a sore throat the last 3 or 4 days and thought OH NO, this must be the onset of a cold... but so far nope. So, I am thinking it is the advair or spiriva. Sometimes I get really hoarse from that so possibly it is causing a sore throat.

I'll keep you posted on how the work out goes. The only thing I can see keeping me from this is if the burning gets worse in my lungs. I am hoping working out in doors won't effect that, and it was just the cold outside and the smoke.
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spunkie
Member

Oh Kellie so glad you went back and didn't let it beat you ... You are wonderful go girl !!!

I thought if you just didn't do as much and rested more it would work and it did so happy for you.
Glad you want to get the weight off because it does effect our breathing. That is why I wish I could do more to get rid of some pounds..

I sure wish you luck with your goal of 5 days a week. Just work at your own pace you will know it. That way maybe no one will watch you so close once they know you know your own limits.

On the sore throat be sure to rinse your mouth out after talking both your Spiriva and advair or drink something. If I don't I get a sore throat real quick and even can make my mouth have sores.

When I was able to exersise like you I did like you are doing went to gym but only did half of what others did and it worked well..

Please keep us posted I hope the burning in your lungs do not get worse they put me on reflux meds and that took the problem away maybe it would help I do not know.

God Bless
SMOKE FREE AND LOVING IT .... JUST .... PAYING IT FORWARD
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Sylvia, if you live in a colder or humid climate, it most likely is the weather that is causing you to have a harder time breathing. I always have a rough time breathing in the cold and have to cover my nose and mouth when I'm outside in it. Can't breathe in the humidity either. I would let your doctor know if it gets worst though.

Kellie, I'm so glad you finally have some sort of light at the end of the tunnel! When we first became friends, you commented to me on how much we have in common....get this...I'm 5'3 1/2" and weigh 203. Pretty close to the same size! Are you my sister? LOL. I'm so proud of you for going back to Curves. If you can't get to Curves, you can always go to the mall. Most malls even open before the stores do just for walkers. That way you don't have to try to dodge the shoppers. That's what I really need to do. Get to a mall, or join Curves. I get exercise at work, but my body is used to that exercise so it doesn't do anything for the weight loss. It is a big part of our breathing problems. When you do finally get back to your pulmonologist, see about getting into pulmonary rehab too. They have therapists there that will monitor you before and after every exercise and will only have you do what you can handle. You will be amazed at how fast you will progress as time goes on. After the insurance has paid their part, my hospital will let you continue with the program at a MUCH lower cost than Curves or any gym would charge. I just can't get to go there during the hours they are open, or I would go. I'm sure that most hospitals programs would be like that too. It's really worth checking into.

Oh, and I don't know if you know this, but Advair has steroids in it. I was on it at first, but I was getting pains in my legs and back so bad I couldn't sleep. I asked my pharmacist about it and they said it was probably the steroids in the Advair that was doing it. So I told my doctor what they said, and she switched me from Advair to Serevent - no steroids. It made a huge difference. I have never had that kind of reaction to steroids before. But I had never had to take them on a daily basis for so long before either.

Spunkie, I don't know how you've lived with so many breathing problems for so long. It's nice having you here though, with all the knowledge you've accumulated through the years to help us through things.

I know what you all mean about family not getting it. My daughter freaks out over every little thing I do as if I'm on death's door now. My fiance will push me further than I can handle, even when he sees me struggling to breathe. It really is nice to come here to talk to people who just "get" it. Even though it sucks that we have to.

Take care all, will talk again soon.
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kellie3
Member

LoL Barb... Maybe some cosmic sisterly thing.

So, you all know the story.. my husband, who "legally" now is my ex. That in real life I have to call my Ex when we are.
Today we were at the store and he talks to EVERYONE and anyone. He got to chatting while I was buying produce. The man he was talking to was on oxygen. Listening to them the man told Bill that he had been in construction most his life and had gotten lung disease (there was a name for it but I can't remember) from Aspestos (spelling?). I hear Bill say... "my wife was diagnosed in June with Emphysema.... (this is the part that stuck a knife in my chest) BUT... she got hers from smoking cigarettes for to long... I tried to tell her to quit"!!!!!!!!!!!!
He and I haven't really talked too much about my diagnoses. We went through so much so quickly. Diagnoses.. quitting smoking...divorce... fighting with Soc. Sec.... We just didn't talk about anything going on. Still haven't really. It just seems like we deal with each issue as it comes up then put it aside and continue on. This is probably a woman thing... wanting to talk everything out. He would rather never talk about anything. LOL
I just somehow knew that he blames me for this. And, in actuality he is right. So, when we got in the car on the way home I said... I understand you are probably very angry with me or at least at the fact I have this disease. But in order for me to be alright and you to understand how I feel... You need to let go of this blame and anger. I told him I can't move on if he feels somehow I deserved to get this disease because I didn't quit smoking in time.

UGHHHHH! It is bad enough that I blame myself. But I can't even tell you how painful it was to know he somehow thinks my disease is somehow less "politically correct" or that I deserve this somehow because I got it from smoking.

I am not sure if I mentioned... but Monday I went in and applied for medical through the state. They said I will most likely be approved since I already have SSI but I will be notified in the mail and it will take up to 45 days. Still not complaining. The state program is a great one, I will be lucky if I get it. Full medical with long term care 100%. Plus all medications. Eye Care is covered if necessary because of perscriptions... which I can use.

I went back to Curves today. The nurse was still there excercising. She is still asking me how I feel. LOL I teased her today and told her I think they have her on speed dial and when I show up they buzz her.
Anyway I think I will do fine. I know I was sore today and that's a good start. I like the fact I can go as slow as I want.

Hugs to all of you. Thanks for listening, Thanks for caring, and Thanks for being so supportive.
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