I've learned a few things over the past few years from dealing with my COPD. One is if you go to a doctor for help, take his advice; you are partners in your care. The other is not to lie to him.
I tried fairly successfuly for several years hiding symptoms and telling everyone that I was "okay". I was pretty good at walking for a little bit and then stopping, pretending I was looking at something so that you wouldn't know it was because I just couldn't breathe. At work and with my family I would hide that it was so hard to do even the simplest things. I was always tired and getting through a day was tough to do.
I took on more and more responsibility at work but was exhausted by noon. I dragged all the time but didn't want anyone to know. Denial? Yes. Need for control? Yes. I just didn't want to be a "lunger". That's what we called them years ago, maybe still do.
I would go to my PCP and get the scripts I needed to help me breathe, but I always told him that they helped and I was doing fine. I didn't tell him about the fatigue and air hunger. He didn't have a clue and that was my fault.
I was also seeing a pulmonologist but it was hard to get anything past him. He sent me to pulmonary rehab a few years ago after many refusals on my part. I cancelled appointments with him constantly and avoided him because I didn't want too many doses of the truth.
Three years ago I was hospitalized with respiratory failure. I wasn't doing well and the pulmonologist wanted to intubate me. My PCP didn't think I was bad enough to be intubated but the pulmo did it anyway. I was on a vent for a week and it looked pretty grim for me for a while. I was also the dreaded nurse-patient who was horrible to deal with. Although I'm sure it was the medication, I pulled the tube out twice and as soon as I was off the vent, I wanted to go home and I was the one who complained bitterly to anyone who would listen that it was too noisy at night. But somehow I got through it and got better.
A year and a half ago, my pulmo wanted me on oxygen. I was still working and thought he was nuts and refused to "give in". But six months later I went to him in tears, no longer able to keep up the sham that was my life. I gratefully accepted the oxygen that has made my life easier. I do what he says now. He's my partner.
My PCP apologized every time I saw him for a year for not recognizing how bad I was before I went on the vent. But truly he had no idea how much I had declined because I didn't TELL him.
A friend used to have as her signature: "It may be that my life is to serve as a warning to others". I learned the hard way. Thank goodness I didn't die trying to prove how strong I was.
Tuesday, November 21, 2006
Monday, November 20, 2006
Happy Thanksgiving
Years ago when I needed a babysitter for my daughter while I worked nights, I met Erin. Erin was a teen at the time and she and my daughter got along well and I am forever grateful to her for keeping my daughter safe during the nights I wasn't there. Single moms need trustworthy people around them and Erin was that and more.
My daughter and I moved and Erin and I kept in touch kind of hap-hazardly. We both lived in the same town but worked different schedules. My daughter grew up and got married and I hadn't seen Erin for years. I knew she had a couple of kids and was doing ok. I was pleasantly surprised to find out that Erin, her mom and her kids live in the building that I just moved into. We've re-connected and I think her kids are adorable. I comforted her 5 year old little boy last week when he was frightened by the fire alarm and until he lost his shyness enough to talk to the firefighters (it was my fault anyway that he got so scared).
I was pleasantly surprised again today when I found in my mailbox a decorated message from Erin's daughter, (who is 9 years old) to me, and it said:
My daughter and I moved and Erin and I kept in touch kind of hap-hazardly. We both lived in the same town but worked different schedules. My daughter grew up and got married and I hadn't seen Erin for years. I knew she had a couple of kids and was doing ok. I was pleasantly surprised to find out that Erin, her mom and her kids live in the building that I just moved into. We've re-connected and I think her kids are adorable. I comforted her 5 year old little boy last week when he was frightened by the fire alarm and until he lost his shyness enough to talk to the firefighters (it was my fault anyway that he got so scared).
I was pleasantly surprised again today when I found in my mailbox a decorated message from Erin's daughter, (who is 9 years old) to me, and it said:
I AM THANKFUL FOR YOU. HAVE A HAPPY THANKSGIVING
Well damn! It's going right on my fridge. It doesn't get much sweeter than this.
Saturday, November 18, 2006
EVEREST
I cannot for the life of me understand the need to climb Mt Everest. I know it comes from deep within but I have other goals and dreams that are not so grandiose in nature. This expensive dream of reaching the summit can cost around $40,000 as well.
The Discovery Channel is carrying an 8 part series about a group of people and their quest to climb Mt Everest. It seems that the documentary was mainly about Mark Inglis, a double amputee, who lost his legs in a prior attempt 20-odd years ago and now was attempting it again using his artificial legs. He is portrayed as brave and undaunting in his climb to the top. I agree that this must have taken super human determination and strength.
Earlier this year, Mark Inglis and his group were generally maligned around the world when it was discovered that they left a man to die as they filed passed him on their way to the summit. This was caught on film but won't be shown on the Discovery documentary. In my opinion, this is as important as Mark reaching the summit because this is life: many people die each year on Everest trying to master the king of mountains. And I will never understand in my lifetime the inhumanity exhibited by the expedition that would allow them to leave a man in a snow cave to die alone so that their mission could be accomplished. How very very shameful and a sad statement about priorities.
The Discovery Channel is carrying an 8 part series about a group of people and their quest to climb Mt Everest. It seems that the documentary was mainly about Mark Inglis, a double amputee, who lost his legs in a prior attempt 20-odd years ago and now was attempting it again using his artificial legs. He is portrayed as brave and undaunting in his climb to the top. I agree that this must have taken super human determination and strength.
Earlier this year, Mark Inglis and his group were generally maligned around the world when it was discovered that they left a man to die as they filed passed him on their way to the summit. This was caught on film but won't be shown on the Discovery documentary. In my opinion, this is as important as Mark reaching the summit because this is life: many people die each year on Everest trying to master the king of mountains. And I will never understand in my lifetime the inhumanity exhibited by the expedition that would allow them to leave a man in a snow cave to die alone so that their mission could be accomplished. How very very shameful and a sad statement about priorities.
Wednesday, November 15, 2006
Life From My Couch
I knew this would happen. Give me some time off from work and I degenerate into a remote controlling, lazy and uninspired human being. And I'm giving much more credit than earned by saying I'm a human being!
I have only been watching TV and sleeping and it's been hard to get me away from the Food Network, House, ER and Millionaire long enough to cook a meal or do the dishes. My grooming habits have degenerated to showering only when stinky or my clothes are dirty. And clean clothes means sweats and a tee shirt.
I was bored last night and threw an impromptu block party. By that, I mean I went to cook some hamburg on my stove last night and something started smoking under the burner and my smoke alarm went off. And in my apartment, I not only have smoke detectors, I have real live loud clanging detectors that sound in all 6 apartments and up and down the street and is hooked up to the fire department who came screaming over to my house to join the party. So everyone knows who I am now in my new neighborhood. I just don't think they like me too much.
I decided after that fiasco, that by tomorrow I'm getting cleaned up, get out and back to the real world. I am going to see family, and I'm going to use the Employee Sale Coupon that my brother sent me to get some of my favorite Yankee Candles. Ah the sweet smell of reality. Another reason to look forward to tomorrow.
Wednesday, November 08, 2006
Election 2006
November 7th has come and gone and another election is over. I am not particuarly political. I'm not left or right or democrat or republican or green party or libertarian or whatever. I vote for who I think will do his or her honest best for the people who voted them into office.
I am a cynic. I despise the negative campaigning and mud slingling and name calling. I vote on the issues that I understand and believe in. I am not going to vote if I don't totally understand what is at stake and I really try to understand each issue prior to casting a vote. I believe in personal responsibility and think that there is too much government. Too much red tape and too many people in the mix for politicians to make good on their campaign promises. I don't for a minute believe a single one of them when they promise something. There are too many lobbies and special interest groups with money to sway even the most honest politician at some point.
I've always said that while I'm too old to lead a revolution, I would be in the front lines, if anyone wanted to get the ball rolling. Idealistic for sure. Unreasonable probably. But no one ever thought the Boston Tea Party would happen either.
I think something has to change before we find ourselves separated by someone who comes in from another country and starts dividing up the states to run. I for one don't want to lose a single right I have. I appreciate living in America and savor my rights. I hope we don't lose them in my lifetime. I cannot think of anything more sad.
Abe Lincoln, where are ya, dude?
Sunday, November 05, 2006
Inner Chef
I have about a month off now without any work. I'm not sure what I'm going to do. I do know that I tend to get depressed when I don't involve myself in something. I am SO over moving. Yes, I have boxes and boxes to unpack and things to place somewhere but that doesn't spark my interest right now. My inner chef wants to go on a cooking spree but well, that doesn't work very well if you're just cooking for one. I am very very much looking forward to my daughter coming home this month finally after 2 months away. I'm hoping she will inspire me to finish up unpacking and decorating and give me someone to cook for.
But my inner chef is getting active again. I made a chicken noodle soup from scratch today and it came out really well! I even surprised myself. I love cooking shows and try to learn the basics so that I can create my own dishes. I am known in my family for my chili but have been experimenting with Asian dishes lately. I can do a mean teryaki steak or chicken and special rices. I remember years ago watching Emeril Lagasse and learning how to season a turkey by putting seasoned butter between the skin and the meat. YUM! And while Rachael Ray is a little too perky for me, I have liked her 30 minute meals. I cannot however, fathom where she gets the hutzpah to have a daytime show offering ADVICE on things such as relationships and kids. Duh. She is recently married and has no kids. She should just stick to cooking!
Friday, November 03, 2006
Good Week, Bad Week
We had a drug raid last weekend in my house (6 apts). Another reality check of where I'm living. But it's all good because they didn't bother me and I didn't know it happened until after the fact. I was worried about Halloween because for the first year I didn't have candy for the kids and thought my car would get egged or something but that was not the case. Thank-you neighborhood!!!
I totally ran out of oxygen by Monday. I didn't panic but I also didn't move around a lot. I always wondered what I would feel if that ever happened, but it was okay. When I have extreme episodes of shortness of breath, I sit very very still. In my mind I am crying and scared but outward I am calm and collected. I've learned that crying only blocks my nose and makes it harder to breathe so I work very hard when I'm scared to be calm and control it. Panic only makes the situation worse. This lesson worked well for me when I was out of the O2. My worst times are in the middle of the night when no one is awake anywhere in the world and my mind works overtime, thinking of the worst scenarios. It's hard to describe, and happens infrequently but when it does happen, and I feel breathless and helpless, I am terrified. It is just simply horrific to feel this way and be alone. I don't wish this on anyone and only wish I had quit smoking so much sooner. If nothing else, I am a role model to smokers about what will happen if they don't quit. (hmmm ~ is there a public service commercial in my future?)
All in all it was a good breathing week for me. I was up and out every day this week and that is a sweet thing. I resigned from full time work a year ago and this opportunity to smell the roses is awesome. I have enjoyed this fall so much and little things are important to me again. Money isn't everything and it's a shame that I had to get sick to appreciate that my career wasn't all that I thought it was to me. I can still make a difference in lives and enjoy life as well.
And that is what made this a good week.
I totally ran out of oxygen by Monday. I didn't panic but I also didn't move around a lot. I always wondered what I would feel if that ever happened, but it was okay. When I have extreme episodes of shortness of breath, I sit very very still. In my mind I am crying and scared but outward I am calm and collected. I've learned that crying only blocks my nose and makes it harder to breathe so I work very hard when I'm scared to be calm and control it. Panic only makes the situation worse. This lesson worked well for me when I was out of the O2. My worst times are in the middle of the night when no one is awake anywhere in the world and my mind works overtime, thinking of the worst scenarios. It's hard to describe, and happens infrequently but when it does happen, and I feel breathless and helpless, I am terrified. It is just simply horrific to feel this way and be alone. I don't wish this on anyone and only wish I had quit smoking so much sooner. If nothing else, I am a role model to smokers about what will happen if they don't quit. (hmmm ~ is there a public service commercial in my future?)
All in all it was a good breathing week for me. I was up and out every day this week and that is a sweet thing. I resigned from full time work a year ago and this opportunity to smell the roses is awesome. I have enjoyed this fall so much and little things are important to me again. Money isn't everything and it's a shame that I had to get sick to appreciate that my career wasn't all that I thought it was to me. I can still make a difference in lives and enjoy life as well.
And that is what made this a good week.
Thursday, November 02, 2006
ER
Ok, I am officially the biggest ER freak on the planet. After 30 years of nursing in every imaginable setting, you would think that I wouldn't need to get a fake fix of medicine. But oh yeah, I do.
I have watched every episode from the beginning. I have watched every episode at least three times. Every time it's on TV I watch. Yesterday I watched
Dr Romano die ironically by a heliocopter for the third time. I am pathetic ~ I cry everytime I see Dr Green die. I sit on the edge of my seat every time someone is in danger and I have passionately loved all of the leading men.
I still miss the docs who are gone: Doug, Mark, Carter. I swear I'll quit watching if anything happens to Kovac...I've been disappointed with previous seasons, but I'm really liking this one. There's lots of activity and good characters.
I've only admitted this here, so don't tell anyone, okay?
I have watched every episode from the beginning. I have watched every episode at least three times. Every time it's on TV I watch. Yesterday I watched
Dr Romano die ironically by a heliocopter for the third time. I am pathetic ~ I cry everytime I see Dr Green die. I sit on the edge of my seat every time someone is in danger and I have passionately loved all of the leading men.
I still miss the docs who are gone: Doug, Mark, Carter. I swear I'll quit watching if anything happens to Kovac...I've been disappointed with previous seasons, but I'm really liking this one. There's lots of activity and good characters.
I've only admitted this here, so don't tell anyone, okay?
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