Never lie to your doctor

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.

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:

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.

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.

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.

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?

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!

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.

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?

High Price of Medicine

I am sick and tired of American drug companies putting the squeeze on my limited wallet! Because of my COPD, I take many meds and inhalers. Even with insurance, the co-pays are high. But as of October first, I no longer have health care coverage. No more co-pays. So the 8 meds I take will now cost me more than $500 per month and if I couldn't afford the $400 health insurance premium under COBRA, I certainly cannot afford these outrageous prices.

Last year I was without insurance for a month and applied to the Partnership for Perscription Assistance. I had to pay them $5 per perscription to get applications to the pharmaceutical companies. Upon receipt of the applications, I noticed that many of them have their own charges. However, by that time, my insurance was re-instated and I didn't need to apply. I never received my $40 "guarranteed" fee, even after requesting it 3 times. A year ago I never would have whined about it but now I don't have a full time job, don't have health insurance and money is tight. I have to pick and choose where every penney goes.

I made the choice to buy my meds from India. I know many many people who do this and some of the meds are from the same pharmaceuticals that supply the US. The big difference is that I only paid a fraction of what I pay with a co-pay. I am estimating that I am saving at least $1,000 over 3 months! This is HUGE to me! And not only do I save money, I am able to get Symbicort, which isn't even available in the US until next summer. It has been approved overseas for quite a while now. I am very excited about starting this and yes, my doc is aware of it. Symbicort will take the place of Advair, which on some days is very hard for me to inhale.

I don't know what the answers are to the high cost of drugs in the US, but until the FDA and the big drug companies stop playing favorites and trying to see who can make the most money, I am going to keep getting my meds from India. They are good quality, they work and I can afford to still eat.

Daughters Rule!

My daughter gave me the most awesome gift this past Sunday. She's been gone for a month and a half and she called me to say that her husband was dropping off a present that she gave him for me...I answered the door when he knocked and THERE WAS MY GIRL!!! I was totally shocked and totally happy and absolutely love this little girl (who is now 27) who is the only person who can make my day like that! What a wonderful surprise. Daughters really take care of their moms! Daughters Rock!!!

Welcome Home

I can't believe that it's been almost 2 weeks since I've posted, read or done much of anything online! Well, I'm moved and functional and haven't gone nuts from working and moving and breathing and getting to know the neighborhood.

I love that I'm closer to town and the college that I teach at. However I have been sheltered from pesky neighbors for the past 10 years. I remember now why I loved it so much out further in the country. No one bothers you for anything out there.

In the almost 2 weeks that I've been living here, I have been commissioned to take my next door neighbor shopping tomorrow. My own fault, I have to say. Dumb dumb dumb! I saw her walking home one day carrying a ton of groceries. She and her husband don't have a car so I told her husband that I would help her out and take her grocery shopping so that she didn't have to walk home with tons of bags. The next day, she came over and said "Mickey said you like to shop. How about if we go to Walmart and Big Lots?" Umm, I hate to shop but I guess I haven't completely rid myself of the inner jerk who feels that she has to please everyone. I didn't want to make HER feel bad so I said ok and we're going tomorrow. I love to shop online, but tomorrow I will drive 25 miles to sit in the car while she shops her heart out. I am definitely having a good long talk with my inner pleaser person and she's taking a hike!

My other welcome to the neighborhood happened on Monday afternoon. I was working on lesson plans and all of a sudden I heard yelling. "Shut up you crackhead!" "I am not a crackhead you pothead!" "Go do your crack and leave me alone!" "You asshole!" And it got more intense from there. I abhor drama and I guess I'll have to get used to having it on the periphery until I can tune it out. It was a nice reminder of how I should be grateful for my little world that is free from the drama queens and crack heads.

But overall I love my little space and get insanely good feelings being here. I didn't keep anything that I couldn't remember who gave it to me. So what I do have are things with meaning and comfort and peace for me. My pound kitty loves it here too. I adopted her from a shelter a few years ago and she is like a kitten again with hardwood floors to go racing around on and views from the windows that she could only dream of before. Yeppers, we are loving it here.

Welcome to the neighborhood. Home Sweet Home.

Songs to play at my funeral

I was tagged by MotherJones to list 5 songs to be sung at my funeral. Here we go:

How can I keep from singing by Enya

The Pilgrim by Kris Kristofferson

The Last Laugh by Mark Knopfler

Massachusetts by the Bee Gees

Everything Must Change by Barbra Streisand

I will not be around until probably next Tuesday ~ moving day is Saturday!

When life throws you lemons

I am bone weary tonight. I have been going like the exerciser bunny for a month, dealing with the drama (or is that trauma?) of having to move on short notice, trying to find a place that I can afford, packing for the place that I can afford but don't like, keeping up with lessons and classes and teaching.

I want to scream and cry but all that does is make me short of breath so I don't. But I'm afraid that after the move is over (it's this weekend) I will crash and burn. I have been so stoic that I haven't even begun to process how my life is changing. This is surely causing me stress and I already know that stress is just plain bad for my mental health and physical health. It's usually after a stressful situation that my body gets in an uproar and I wind up with an exacerbation (an acute worsening of my COPD symptoms). That justs gets me a trip to the hospital and twice already I have been on a vent in respiratory failure.

So I have been making lists of things that are good in my life and I have plenty of good things. Gifts, really. A loving caring extended family, a profession that I love and do not have to give up completely. A healthy daughter who is 27 and an adventurer and a wonderfully gifted and giving person. You know, someone you're proud to say that's MY daughter!

Most of all, and the best gift of all is that I am alive. I can see hear feel and taste it. It may be harder these days to get things done, but the alternative sucks. So things aren't really that bad after all.

Okay, enough warm and fuzzy. Tomorrow I might have to do this again...

Into each life a little rain must fall

It's amazing how a rainy day will land like an elephant on my chest. Ugh. I am fine if I'm still but the minute I move around, I have to crank up the oxygen and try to go slow. Slow is not something that comes naturally to me. I've received comments all of my adult life about how fast I walk, how fast I accomplish things. That all changed over the past year.

In order to complete any task I have to move at a snail's pace. Un-natural and frustrating in so many ways. It also means that I need help to do some things, like move furniture or lift things. The oxygen it takes to move my arms over my head is amazing. I know that I won't regain any lung function, but I also know that if I improve my muscle function, they can use oxygen more efficiently so that my oxygen can go to the vital functions of keeping me alive. Important task.

However, in the past few months, I've begun working again part time and struggling with the task of finding a new place to live and other life issues, and consequently have let exercise go by the wayside. I have attended Pulmonary Rehab in the past and really need to get back to get into shape again. I have gained weight and know that contributes to my shortness of breath.

My short term plan is to go back to Pulm Rehab after I'm settled at a new place (I'm moving next week) and begin to get back some function so that I am not living such a sedentary life. Before pulm rehab the last time, even something so simple as showering was pure torture. I'd be gasping for air by the time I was done. Through rehab and support groups and internet searching, I have found many ways to lessen the torture. But I was functioning so much better and feeling better while I was doing the required exercises. Even mentally, I was so much better by exercising. The more I did, the more I wanted to do.

I'm looking forward to getting back to that feeling of well-being despite the limitations. Instead of this feeling of helplessness in the face of the limitations. Then the rain might feel less like tears.

A Helping Hand

Last week we sent one of our students out by ambulance with a cardiac event. We accepted her into our CNA/HHA program knowing that she had come from an abusive relationship, she was without her job of 18 years due to a facility closing, and she was practically broke.

We didn't know that her cardiac issues were not stable. And we didn't know that she still lived in her ex-husband's house and that he still abused her. We didn't know how really broke she was until someone told us that she paid her ex her entire unemployment check every week for rent.

What we did know was that this woman was trying to rise above her challenges and be a caretaker to others. And because she found within herself a spirit of giving and caring and a need to nurture, we found a way to have her program paid for by a grant.

So out she went during class last week, feeling dizzy and nauseous and with a BP through the roof. I watched the class come together as a team to make her feel cared for. And once information was shared, they began making plans to make sure she has friends to get through this and to help her catch up with the class. They also made plans to make sure that she has food to eat, rides to places and friends to watch out for her. What a class. What class.

People in the helping professions ROCK!

Life

"Learn to get in touch with silence within yourself, And know that everything in this life has purpose. There are no mistakes, No coincidences, All events are blessings given to us to learn from."

Dr. Elizabeth Kubler-Ross

Critiqued

My blog has been critiqued by Billy Mac! This is what he said: http://critiquemyblog.blogspot.com/2006/09/live-love-laugh.html
It's progress not perfection... Thanks Billy!

Fat Frayed and Frazzled

Today I am so tired and discombobulated. I am tired of packing boxes, tired of working on lesson plans and tired of wrapping myself in knots over things that are just out of my control right now.

I don't know why I do that; I don't WANT to do that. It just happens. Anything that could go wrong did go wrong today. I froze up my portable oxygen tank and had to take a shower gasping for breath. I stumbled over boxes all day, hurting my toe and my shins multiple times. My teaching partner called in the morning to tell me she wouldn't be with me this evening at class but someone else would. I worked on the wrong lesson plan for 5 hours today because she forgot to tell me that that someone else was teaching something else tonight.

The list just goes on and on. But now I am going to take a very DEEP breath in through my nose and very softly and slowly breathe it out through my pursed lips....and again...and once more for good measure. Now that works pretty well. I wish it was so easy to lose weight! I'd love to breath in all the food I crave and breathe out the trans fat. I can tell I'll need some Enya to fall asleep tonight.

New Path

For a long time after I had to resign from full time work as an RN due to COPD, I thought I would just wither and die. I always wanted to be a nurse and it sort of defined me as a person and what I felt about life. Give back. I could have been a poster for nursing recruitment. I loved it. I feel it was a gift to be in someone's life in their lowest moments. I could feel good about myself if I could make a difference in someone's life. As hokey as it sounds, I enjoyed helping people.

I was blessed with an opportunity to continue to nurse in a different environment. I now am the program director and teach certified nursing assistants. I think I've mentioned before that I have been the RN signature of a CNA program for about 3 years. I never took money for that but had oversight of the program taught by a non profit foundation at our local community college.

Last October I resigned my job as Director of Nursing and like I said, I felt devastated that I couldn't manage the stress of the position as my symptoms of COPD became worse. This year, I was offered the opportunity to be more involved in the class and to help teach it. Oh my goodness, I had never thought of teaching, ever! But as I wrapped my head around it and the posssiblilities, I came to love the idea. The foundation and I had the same philosophy: to bring qualified care givers into the already stretched health care field.

A new class started on Monday. I looked at the class and was impressed by the faces of people who wanted to make a change in people's lives. What a unique opportunity to share my ideas and instill in them a pride in their work and a sense of self esteem because they are making a difference.

I had reached a point in my own career where I felt pretty jaded and cynical and helpless to effect changes. It took months and months away from work to recover my love of nursing and to be positive again. I remember now why I went into nursing and my love of helping and how by making small changes, each person can make healthcare better for everyone. We each have a roll to play in the grand scheme of things and I feel that now I am here to show others my enthusiasm and love of caring for others. It's still cool and it's still relevent and it's ok to love helping others. I hope that these students go out and challenge the status quo. I hope that they remind others who are cynical about why they went into a helping profession. I hope they make a difference.

I still have so much to give and who could ask for anything more?

The Plan?

I'm surrounded by boxes because I'm moving in 2 weeks and surrounded by papers and books because I have a new CNA class that started tonight and I'm feeling just a bit overwhelmed right now. I can only go so fast and that's really pretty slow these days and nothing seems to be coming together like the PLAN.

Okay, I never had a PLAN, but I wish I did. I guess I just thought that everything would fall into place and I'd find the energy somewhere. Alas, that energy is hiding somewhere under a box, I think. An empty box. This is hard stuff. Just going through things to decide if I want them to move with me is so time consuming and thought provoking. I have so many memories here that it's hard to just cast off some just because I won't have room for them in the place I am going.

I'm still so angry that this has been forced upon me by a landlord who wants to live here for 3 or 4 nights a week. He actually had the nerve to call me last week to say that I might be able to stay if he can work something out but it wasn't certain...arrrrgh. I have already totally disrupted my life and plans to comply with his plans and I wouldn't stay now if I could stay rent-free! I would love to slap, slap, slap him up side the head.

But, on the other hand, I need a smaller place because I can't take care of a large place as well any more. I have to make my energy last all day and portion it out a little at a time. That has been very frustrating for me. I've always been so active and full steam ahead on everything in my life. To slow it down has been a challenge. To ask for help *gasp* has been almost impossible. But I'm learning. And it has even been a pleasure to stop and smell the roses for a while. That was a lesson learned way too late. I would strongly suggest that everyone take me-time everyday and remind yourself that you, too, are worthy of comfort and support. Take care of your bodies as well as your spirit.

Yeah, that's my plan...