Re-defining Normal

"Every morning I wake up and must re-define normal". That's what Augustine (Augie) Nieto said. He was diagnosed last March, at 48, with ALS (Lou Gerig's Disease), a degenerative neuromuscular disease for which there is no cure. Most people die within 5 years of diagnosis as their respiratory muscles fail to allow breathing.

To me, Augie Nieto is a hero who fights everyday to maintain what he has, and works tirelessly to bring awareness and money to help find a cure. He is a fitness guru and consultant and doesn't dwell on what he's lost to the disease. He can no longer use his arms and his speech is slurred, but he puts himself out there everyday to improve the lives of those to come from the devastation of ALS.

Earlier today, I was going to write about how I am learning to re-define normal for myself, but I am very humbled by this man and all the other courageous people who live with life threatening and debilitating disorders. I would just prefer to say my hat is off and my heart is full by the heroes who continue to work to help others in the face of their new normals.

bits and pieces

*I just have bits and pieces to say today. I'm very content with Christmas coming and being with my family. And sharing a bit of Bailey's Irish Cream with them...ho ho ho!

*I've loved looking out my windows at the neighborhood for the past couple of weeks because everyone's had their Christmas lites up and shining every night. For some reason, they are all off early tonight and I know I am going to miss them after they're down.

*I just watched the last episode of the Everest expedition on Discovery. I still don't understand the need to push oneself to the point of losing fingers and toes to frostbite or even dying in an effort to reach the summit of ANY mountain. It's very sad about the men missing in Oregon on Mt Hood, too. I'm wondering what it takes to be that single minded about something. I will never know because I have trouble breathing at sea level, never mind at 29,000 feet above it!

Today

It's hard to believe that I haven't posted since last month. For the past several weeks I've felt achy (pulled a muscle in my back) and cranky and down in the dumps. This always seems to happen during the holidays, and I know that it's fairly common, but it still feels like an out of body experience.

Most of the time I try really hard to keep a positive attitude, look on the bright side and appreciate what I have, rather than what I don't have. I have to say that this breathing thing is putting me in a foul mood. I start to do something, and have to stop to catch my breath even wearing the oxygen. Whatever I do, it takes twice as long to recover from doing it. This really disheartens me after a while. I am tired of fighting for each breath and pretending that I am happy to just be alive. It sucks to exhaust yourself just doing basic daily things. I have to force myself to get beyond that to do anything like shopping, cleaning, cooking or even going to visit someone to the point that I try to avoid doing them at all.

Okay, that's out of my system. Moving on, I've got another class starting after the first of the year. They're really going smoothly now and I find that I just love teaching and sharing my nursing and life knowledge with others. We've just gone through the interviewing process for the next class and what I love about that is that we can find funding for some very underprivileged and worthy people. We have a couple of students who are living in shelters right now and I think it's awesome that we can provide an opportunity for them to change the course of their lives for the better. When I start feeling sorry for myself all I have to do is look around me and find ways to help others and *poof* goes the pity party and it is replaced by a renewed purpose to life.

So my life is a continuum of dichotomies. Good and bad. Up and down. Wise and dumb. Back and forth. Happy and depressed. Sometimes in the same day, sometimes not for months. Today I am grateful that I'm alive and feeling anything.

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...

Grief

How on earth do you grieve for an online friend who has died? My friend Melisa passed away at 1:25 am with her family at her bedside. I cannot believe she won't be in my life anymore. I can't say goodbye to her. I don't know where to put my anger and grief right now. I know that I should know what to do but I can't think.

Melisa was just 42 and had COPD which was very severe. As bad as her illness was, she continued to volunteer for her son's boy scout troup, her religious group and she was so cheerful and encouraging to everyone. With her oxygen she could still do laundry and vacuuming and shopping. Melisa still did her gardening and loved to watch the hummingbirds that came to her bird feeders. What an inspiration she was as she waited for the medical team to tell her she was "bad enough" for a lung transplant. How ironic that she died waiting to be bad enough.

I hate this disease. I hate what it does to people. I hate that because we smoked and "did this to ourselves" it is so hard to get research money to come up with a cure. I hate being called a "burden on society". I hate that it took a good friend from me and left me with this helpless feeling.

Melisa was a good friend to me and I'll miss talking with her on Yahoo and on our cells and I will definitely miss her emails first thing in the morning. Already our Breathing Better site feels hollow without her. Like a school emptied out in summer.

I know you can breathe well now, Melisa, Godspeed.

My Friend

I didn't know you could get so attached to someone you met online. I was surprised to find out how much I cared. I should have known because I even care about characters in books. But I was still surprised.

I met Melisa on a COPD board. She was so friendly and upbeat and we hit it off right away. We kept saying that we could have been sisters because we like so many of the same things and we both have this cynical, kind of dry sense of humor.

I had resigned from full time work and was spending a lot of time at home a year ago. Melisa and I would meet up on Yahoo chat and spend time sharing stories and talking about our lives. Melisa is 42 and her FEV1 is about 12%. She has a husband and an 11 year old son. I thought life was unfair to me at 55, but at 42, well that's just cruel.

We found out that we had the same cell phone plan so we started calling each other. How cool, I'm in MA and she's in TX and we can talk free. (I'm just getting up to speed with technology.)

Last night her husband called me to say that she became very ill during the night and is in the hospital. He cried as he said they just weren't sure she would make it this time.

I have been feeling so sad and lonely since that call. I can't get anything done. The bad part of an online friendship is that you're not family, and you are not near, and there is nothing you can do to even comfort the family. I feel very fortunate that he even called me to tell me. I don't know when I'll get another update on her.

My daughter and I were talking today and I was telling her about Melisa. I guess I never mentioned Melisa to her before. I don't know why I didn't. She was quick to ask if I was okay. Apparently she has had an online friend for about 5 years. They have never met and she told me that she is closer to her online friend than some of the friends she sees every day, so she understood what I was feeling.

I have a new perspective on friendship now and it includes loving online friends even if it is hard sometimes to deal with the realities of not being closer, not meeting face to face and not being able to be there if they really need you.

I am praying for life for Melisa so that she can have more time with her young family. Amen.

All Hail Helios

I have been the RN signature of a CNA program for several years and didn't really have much to do with it except to review the curriculum and make sure it was in compliance with state regulations. I didn't even take the pay they offered. I was busy with my full time job of Director of Nursing in a long term care facility.

However, COPD was kicking my butt as well as the stress of my work. I was getting more and more short of breath and it was harder to stay well. My pulmonologist wanted me on oxygen long before I agreed to it. In my mind, having to use oxygen was akin to saying that I wasn't a good nurse. That I was less of a person because of a disability and I would become one of the "lungers" I had taken care of so many times. I cried and cried when I finally realized that I would need the O2 to make my life better. I conceeded and began using it a year ago.

At the same time, I resigned as Director of Nursing and felt devastated. I had been making a very comfortable salary and had great health benefits, loved my job and the people I worked with. But I couldn't keep up with the demands of the job and take care of myself at the same time, so I left. Working and not taking care of myself was the reason I was in this predicament. I was so depressed as I thought I would never be a nurse again and there was nothing else that I wanted to do. How would I support myself? Would I be on disability? Would I still be able to keep my home? How would I pay my bills?

What I've come to learn is that the oxygen has given me a new life. One that I couldn't have had without it. Yes I'm on disability, my FEV1 was 29% when I quit work. But now I can breathe easier and that allows me to move better and more often.

I went to pulmonary rehab, which showed me that there were still things I could do, maybe just a little slower. I used my oxygen and cranked it up as I worked the treadmill, the upper body machine and the nu-step. I did exercises at home with weights. I learned how to breathe in through my nose and out longer through my lips. I learned how to really breathe with my diaphram. I learned that while I would never regain lung function lost, I could make my muscles use oxygen more efficiently through exercise and save more oxygen for my vital organs.

As I became more used to wearing the O2, it didn't bother me so much to be seen with it on. I love teaching people about it. In a grocery store, a child asked his mom in front of me why I had that hose. She said "Why don't you ask her?" It was my pleasure to respond that I needed more air and the tank supplied it. I can go anywhere with it because it's so portable. I can wear it as a back pack, on the waist or over my shoulder. I have a short canula for trips out, and a long canula at home so I don't yank the tank onto the floor from the counter when I'm working in the kitchen. I am never hooked up to the large filling canister or a concentrator unit. I am free as a bird!

So fast forward to the CNA program ~ I am alive and well and able to work effectively as a nurse and be an advocate of pulmonary rehab and oxygen therapy! Who'd have thought that a "lunger" could educate the medical community and feel so good about it! I am not only responsible for the content of the program, I also teach several modules. I never thought that I'd like teaching, but I do. I have also been offered a position with an MD to do home visits to his patients, and I may also do this. All of my doubts about working with oxygen are fading in the distance.

Life is good again and all hail helios! I have a life again and I can still be a nurse!!

God Bless America

I let the feelings just wash over me today. I don't know why this anniversary is any different from the others, but I couldn't stop thinking about it today.

All I want to say is that I still think of all of the victims, the ones who died, the ones who survived and all of us who were touched. The world cannot possibly mean the same to us but I still believe that democracy rules and I am grateful for my life in America, where dreams can come true and our way of life is enduring. I could not live anywhere else in the world. I am proud to be an American.

Fickle fingers

I think I'm getting arthritis in my fingers or maybe it's so much work on the computer. I've been working on some teaching modules for the CNA classes that I teach and I'm also working on a teaching tool for oxygen users as well as health care workers.

My fingers are cramped and boy do they hurt. Of course that's not going to stop me from typing! I just read about a nurse who came home from work and found an intruder in her house and strangled him to death with her bare hands! HER fingers work just fine!

Reflections

Today while taking it easy ~ no holiday shift for me ~ I have spent time thinking about where I am and how I got here. Who I am and what I want to be. I'd like to spend some time reflecting on how I became a nurse, first an LPN and then an RN and all that has led to where I am now. I know that it will take way more than one post so I hope you will perservere while I offer my spin on life and nursing.

I always wanted to be a nurse. There was something about it that spoke to my need to nurture and help people. I continued to want to be a nurse even while women burned their bra's and said "you don't have to be JUST a nurse or JUST a schoolteacher." Wow is THAT ever dating me! I never ever felt like JUST a nurse.

I remember always wanting to be like Mother Teresa, wanting to do something so big that it would save the world. It took years and years to be okay with just making a difference each day in someone's life. I'm good at that. I love nursing. That is what I do.

I was devastated when I thought last year that I would never do that again. I let stress and an inability to see my own needs get in my way...I had COPD and could just not go on in my position as a director of nursing in a LTC facility, no matter how much I loved it.

I went to nursing school straight out of high school. I went to an LPN program that ran 15 months straight, which is not being done today. I was totally unprepared. The hospital school of nursing that I went to began as a TB sanitarium. They still had a ward for patients with TB who had no place to go.

TB had been conquered and the hospital had moved on to cancer. Radical surgery and radical cases. My first patient was an elderly man and he was both OLD and CRANKY. When I found out that I had to wash his privates, I said this is not for me and quit. I had been thinking about it for a while because I had heard whispers that there was another man there with no arms and no legs and I finally SAW him. Oh no, not for me at all! That ended my parents hope for the first generation to advance in school; I just left.

The next couple of years were spent working as a receptionist, a donut maker and short order cook. Nothing made me feel like it could be my life work. I went back to the nursing school and made it this time. I found that I loved the challenge of making people feel and smell better. I say smell because cancer has a particular smell. In my early days of nursing we used to place oil of wintergreen in the rooms. That only made it worse. I can still "picture" the smell in my mind!

For the better part of 10 years I lived in a dormatory and worked in the "old san". It was a big "campus" with lots of outbuildings. We even had a seamstress who made us turn- of- the- century nursing uniforms for a celebration of Nurses Day.

The dorm life always invokes a smile when I think of it. My friends and I who worked the night shift would take off in the morning after work to go to the beach for the day; my evening shift friends and I would go to an all-night diner after they got out of work at 11pm. The laughs, the meals, the boys, the dates, the philosophical conversations! It was a memorable time for me.

I learned so many skills there. We autoclaved everything and I learned how to do treatments using a package of sterile products wrapped in a sterile (cloth) field. The instruments were not disposable and were returned each time to Central Supply for sterilizing. I learned how to talk with patients, be at ease with them, and make them at ease with me. The basics of what I would use in my future career were learned as an LPN.

In the middle of my years at the "sanitarium" as it was called in the community, I took 2 years and went to Phoenix to work and live. I worked at Good Samaritan Hospital and my future of working with patients who were dying was sealed. I will share that in my next post.

The Real World

I love Sundays ~ a lazy coffee in the morning and playing with the cat. It's raining today and that's even better. I just love to stay cozy inside and listen to it rain. Ok, that's in my PERFECT world. My REAL world is that I have to go out today to get boxes so I can start packing to move. (I was given a 30-day notice by my landlord to vacate so that he can move in here). Real life can be such a drag!

But on the bright side, I am working on some training modules for nurses, CNAs and oxygen providers. Having been on the receiving end of panic breathing, I wish I knew way back when, what I know now about oxygen and breathing techniques and the equipment. My sister died of lung disease when she was just 50. I could have helped her so much more had I known pursed lip breathing and diaphramatic breathing and tips on how to focus her and talk to her to bring her breathing under control. In the real world, we just don't get enough information and learn much of it on the job.

I am going to make some more coffee and enjoy my perfect world for a while.

From out of the darkness

I have been a member for a couple of months but could never access my account. I have a friend who has started a blog so I thought I'd try this again. I have some things to say, a few things to work out and a some things to share.

I hope to connect with people who are either nurses or COPDers. For me, I cannot separate the two. I am a nurse with 30 years experience who doesn't want to give up my life's work. I may be on oxygen, but I am not without passion for what I do.

I had been in a terrible depression for many months and have come out on the "other side" and I am VERY grateful to be here! With the support of family and friends, and my online family of COPD supporters, I realize that my life can move forward and be the meaningful and rewarding life that I love.