After the rant

I feel better today after spewing all over the blog about how angry I was yesterday. I am going to pick up my pay and get to the bank before it closes at noon.

I have to admit that it felt good to lash out on screen rather than at everyone around me. No innocent bystanders were hurt in the production of that rant.

Today I can move on and feel some gratitude that I'm still standing, still breathing, and still feeling.

Rant

I am so angry, and I hate that because it makes me so short of breath, which makes me even angrier. I am ranting about money.

I am on SSD, and get money monthly. It is a tiny fraction of what I was making as an RN,C. I work part time to feel productive, but let's face it, I need the money too. I just cannot make it from month to month on the disability. So I really count on getting paid for the hours I work. I put plenty of hours in which I don't get paid for, so when I submit the hours, I expect a paycheck. This is payweek, and I was told I would get a check yesterday. Didn't. I was told I would get a check today. Haven't. And this isn't the first time that I have expected a check and didn't get it until days later.

I have been broke for a week. I have no gas, no cat food and other things. I don't spend money on clothing or extravagent things for myself. I will now have to borrow money. I would rather pull my front teeth out myself without novocaine than ask for help. It makes me feel like a loser that I can't manage my finances without asking for someone else to contribute. I feel like I have to explain, and that makes me feel helpless.

I am so sick of paying outrageous prices for the meds I have to take because this country can't get it's act together so that we can obtain good medications at a reasonable price. I look to India to help me out with that.

And healthcare - don't get me started. After I left work, I could only afford COBRA for a few months. I don't qualify for MassHealth because I make "too much" money. I can't get Medicare because there is a 24 month waiting period once you get SSD. My oxygen bill is over $8,000. I owe my PCP and my pulmonary doc about $1,000. I owe the hospital over $7,000 for a 2 day stay for pneumonia last month. Too much money just isn't in my vocabulary.

So while I am waiting for a check that I earned and need, I am full of hostility and anger that it isn't HERE NOW. Right now what I'm going to do is take a deep breath and try to breathe normal, whatever the hell that is these days, and try to relax before I get on the phone and beg for my paycheck.

Summertime

I am always saying that I don't spend enough time on my own blog but I keep letting it happen. I have been pretty faithfully blogging my pulmonary rehab progress since the beginning of this year over at Breathing Better, Living Well. Rehab has been a huge help to my psyche and my breathing, especially after a recent hospitalization for pneumonia. I thought I would wind up backsliding but ever so slowly, I'm making gains again.

I just got through a training class in July and it's almost time for another class. The last class of students was exhausting. They collectively had the attention span of gnat and were constantly complaining about how we taught them and what we gave them to do, and always seemed to be in the middle of some sort of drama in their personal lives. Thank goodness that's over and now I'm looking forward to a new group at the beginning of the month. I know I'll screen them much better to make sure that they are ready to take on the task of learning. It's always so much fun when students are motivated and really want to learn.

I'm also working on a project to bring free home visits to COPDers. This is exciting work for me and a project that is near and dear to my heart. It's a program to help prevent recurrent hospitalization to a population that could benefit from education and support. It's a nurse-based service but I hope to get referrals from docs who want better outcomes for their patients, and a local hospital that wants to save some money on ER visits and frequent recurrent hospitalizations.

Who knew when I left full time work that I would find so many ways to fill my time that brought me so much happiness! Who needs a summer vacation when you can do what you love and still have time to smell the roses!

The Birthday Girl

So the fruit of my loins didn't like the picture of her that I posted. This one was taken on her birthday and I hope she likes it better! Again, Happy Birthday, Sweetie!

Happy Birthday

Happy Birthday to my bouncing baby girl, 7lbs,11oz, 21 1/2 inches long, born on Monday, at 6:20AM, July 16, 1979.

The birthday happiness is truly mine, for the love and the joy she has brought to my life. Happy Birthday, Megan! I love you.

Pt Cruising

I love my PT Cruiser. I wasn't even looking for a new car when I discovered it in 2004. I was pretty happy with the car I had and was just surfing the web one day and liked the look of it. I thought, well not everyone has one, and all cars were looking generic to me. So I went to a dealer and drove one. I was hooked.

It's easy to get in and out of without scrunching my lungs into my bladder and it's a comfortable ride. I love to drive and some days when there is little else I can do because of how I feel, I get into my car and drive and all is right with the world.

I have never cared much what I drove, and have owned many heaps in my day. I especially was fond of the buick I owned that the driver's side door would fly open when I made right turns...but I digress. So I bought my very first ever brand new, 7 miles on the odometer, sparkling newly painted, no dent new car. Ah, and did I mention the 6-CD player? I can listen to all my favorites while I PT Cruise around the 3 state area where I live.

My car is now 3 years old, and has many miles on it, and I'm still loving my "new" car!

Rainy days

The past few days have been raining and it really messes with my breathing. I didn't even go to a family wedding that I had been looking forward to. I get so much more short of breath and doing anything, even walking, feels like it takes all of my effort and energy.

Needless to say, the couch potato in me shines during times like this. I watch everything from cable news to Animal Planet, Cops, Emeril Live, Hollywood gossip to Nancy Grace. What on earth is all the attraction to Paris Hilton? It seems like everyone is hanging on every move she makes. Well, even I want her to go to jail now. What's up with all the guys and the scruffy look? I really love a guy with a little 5 o'clock shadow, but a 5 day growth in a tux? When did I miss that fashion news flash? And why should I care about Britney Spears? Oh yeah, she's another "poor little rich girl" who's lost her way. Duh.

I haven't been out to do any shopping so I've used up everything in my pantry and fridge to feed myself. I discovered that cereal is a great dinner meal, red kidney beans are quite good from the can, hard boiled eggs are a great snack food and I single handedly brought back tuna noodle casserole.

Now I have to go out today to get some cat litter!

Snitching

I admit it. I snitched. I live in a 6 family house and the family directly upstairs from me got a visit from the PD at 3:30 in the morning a couple of weeks ago. The 19 year old son called me a 'snitch' a couple of days later.

The family upstairs consists of a single mom, her 10 year old daughter, 19 year old son and his wife. I was jolted awake at 3am one morning by yelling. At first I thought it was out on the street, but soon realized it was coming from directly above my bedroom.

The yelling continued and it was so loud that I couldn't go back to sleep so I went into my livingroom and sat on the couch. This went on for another half hour, and then I heard footsteps running above me and a loud thump, all the while the incessant shouting continued. By now I was afraid that someone was being hurt - the thump was loud. I would never be able to live with myself if the young wife or anyone else was hurt and I did nothing about it. I could hear every word that the man was shouting and he wasn't stopping.

I did what I felt I had to do and I called the police. I am pretty tolerant and wouldn't have done anything if it was just the yelling - it was the running and thumping that concerned me. The police came and knocked on their door loudly for over 10 minutes. Of course all noise stopped when they arrived. When no one responded to the knocks on their front and back doors, the PD started to batter their door in. THAT got their attention. The mother came to the door and told the cops that they couldn't come in without a search warrant and the cops responded that they could. She resisted - they bashed the door in to check on the welfare of the family.

Thank goodness no one was hurt and I am NOT sorry that I called the PD. I really resent that this neighbor considers that snitching. If anyone ever hears any loud shouting or banging in my apartment, I would appreciate someone checking it out.

I live in a small town and this whole 'don't snitch' crap is lost on me. I get that there is a whole population of people who have a basic mistrust of any authority but let's face it: the whole 'don't snitch' campaign was started for, and applies to thugs.

I refuse to be intimidated and will do what my gut tells me. I don't think I was too far off, either, because he has since smacked his little sister, and gone after his mother with a knife. Too bad I wasn't involved in any of those incidents because no one else will step up when they see this or hear it.

Tug of war

A tug of war should never involve a child. When I heard on the news about Alec Baldwin's tirade against his daughter over the phone, it just made my heart hurt. I've been there. I wouldn't do it. It cost me several years of being without my precious daughter. Shame on Alec Baldwin for subjecting his daughter to his frustration and shame on Kim Basinger for making the message public and getting a bodyguard for her daughter to further inflame the situation. Here is the rant he left on his daughter's answering machine:

Hey, I want to tell you something, OK? And I want to leave a message for you right now. 'Cause again, it's 10:30 here in New York on a Wednesday, and once again I've made an ass of myself trying to get to a phone to call you at a specific time. When the time comes for me to make the phone call, I stop whatever I'm doing and I go and I make that phone call. At 11 o'clock in the morning in New York and if you don't pick up the phone at 10 o'clock at night. And you don't even have the G**damn phone turned on. I want you to know something, OK?
I'm tired of playing this game with you. I'm leaving this message with you to tell you you have insulted me for the last time. You have insulted me. You don't have the brains or the decency as a human being. I don't give a damn that you're 12 years old, or 11 years old, or that you're a child, or that your mother is a thoughtless pain in the ass who doesn't care about what you do as far as I'm concerned. You have humiliated me for the last time with this phone.
And when I come out there next week, I'm going to fly out there for the day just to straighten you out on this issue. I'm going to let you know just how disappointed in you I am and how angry I am with you that you've done this to me again. You've made me feel like s**t and you've made me feel like a fool over and over and over again. And this crap you pull on me with this G**damn phone situation that you would never dream of doing to your mother and you do it to me constantly and over and over again. I am going to get on a plane and I am going to come out there for the day and I am going to straighten your ass out when I see you. Do you understand me? I'm going to really make sure you get it. Then I'm going to get on a plane and I'm going to turn around and come home. So you'd better be ready Friday the 20th to meet with me. So I'm going to let you know just how I feel about what a rude little pig you really are. You are a rude, thoughtless little pig, OK?

I don't usually talk about this because although it was many years ago, it still can bring pain and tears. When my daughter was small, her dad and I divorced. The divorce was quite amicable and we shared joint custody of our daughter. This ended when our daughter was ready to enter first grade. I felt she should go to school where I lived; he felt she should go to school where he lived. After a year of court battles, my daughter was showing signs of severe stress, and I said that I would settle for joint custody with her father having physical custody if he would get her into counseling right away.

When it came to my daughter, from the start my ex made it hard for me to communicate with her or to see her. Our first Christmas apart, he threatened that I wouldn't see her unless I signed over total custody to him. True to his word, when I showed up at his door on Christmas morning with presents, they weren't home. I had gotten a court order specifically to see her this Christmas because of his threats, but he defied it. I left the presents at the door and left, and I found out later that he told her that 'mommy didn't even want to see you and didn't even get you a present'.

He would unplug the phone so that when I was scheduled to call her, the phone would just ring and ring in my ear. He told her that I didn't try to call. This went on for several years. I endured thwarted visits, calls that were never connected and a barrage of hateful things said about me.

At one point, when I questioned why she was never home when I called, he offered a specific time for me to call. It was Sundays at 6 pm. Dutifully I would call; I would panic if I was a minute late because he would unplug the phone if I was late. I got to talk to her but only for a moment because she would be called for dinner almost immediately. Eventually she started calling me names and I was bewildered. She told me later that her step mother told her to call me these names.

There was much more, but this should be enough to explain my frustration. So I understand the place Alec Baldwin spoke from. But I would never, never bad mouth her dad or step mother or condemn her for speaking trash to me.

I'm no hero. I coped the best I could. For the 5 years that my daughter lived with her dad I was in agony. Probate court sided with him. It was the 80's and fathers' rights were being pushed. I was a professional nurse with a spotless record but the court said I put work ahead of my daughter. WTF??? was a question I often asked myself. I finally consoled myself by immersing myself in drugs. This was another hell that lasted several years. I even left nursing until I could finally pull myself together.

My salvation was a counselor who told me that I should give my daughter my phone number and tell her to call me collect whenever she wanted, day or night. This way it would be her choice to contact me if she wanted and not under any scrutiny from her dad and step mother. She told me that it may take a while, but that my daughter would begin to question whether what she had been told about me was true. And to my surprise, she called. Infrequently at first, but more and more, and eventually we spent a day, then a weekend together. Then she wanted to live with me again. I wasn't the monster that her dad had portrayed and he pays the price of a poor relationship with her today.

I have never, ever regretted not bad mouthing her dad, or making her a pawn in a sick battle. I have had to bite my tongue and deal with enormous pain, but in the end, the relationship I have with my daughter today is so worth it!

All I have to say now is thank the Lord for mental health workers, social workers and nurses who counsel those of us in so much agony and pain, so that we can survive the unimaginable.

Unimaginable

I am having just the worst time wrapping my mind around the devastation at Virginia Tech. So much carnage and so many suffering families that it's mind blowing. I turned the TV on yesterday and my mind was assaulted with the images and realities of how life can change in a heartbeat. I called my daughter just to hear her voice. I cannot imagine what all of the parents and families of the dead students and faculty must be going through. But it must be a nightmare of unimaginable proportion. There but for the grace of God...

We seem to realize, after the fact, that something was not right with someone who would do this. How do you make a conscious decision to kill 32 people? The signs are there. Half hearted attempts are made to help the person. But not enough was done. That seems to be the case with the man who is responsible for this carnage.

I wish for everyone involved peace and some solace from this unimaginable pain they must be feeling. For the rest of us, I wish that we finally learn something from this and prevent it from happening yet again.

Back to business

I've been lax about posting in my own blog lately and I've been missing it. I have spent the past couple of months posting in the rehab blog about my pulmonary rehab experience. It's been slow going for me but I'm managing to move forward.

I miss not writing about things that are on my mind and things that I'm doing and thinking and feeling. So I am going to be here more often.

This month we had a new class start and that's been fun. This particular group is so vocal and ask so many questions that the time flies by. I am so proud of the (mostly) women who find us and are starting a new life for themselves. For some of them, this is the first time that they have done something good for themselves ever. Some come from abusive homes and are striking out on their own after terrible experiences. Some find us after they have raised their kids and want to do something worthwhile with the rest of their lives. All of them inspire me because they are so brave and bring so much determination to the table. It makes me feel so good that we can offer grants and scholarships to many of them that could never have been able to do this without some form of help.

Our program is up for re-certification by the Department of Public Health and I've been working on that for a couple of weeks. I thought I left behind the paperwork that governmental bodies impose when I left full time nursing but lo and behold, they're everywhere! But this could never be as bad as a JCAHO accreditation or a nursing home survey and I do it gladly, knowing that. I've been through them both and they were painful!

The foundation that I work for and I have been talking about a program that we'd like to start that involves free home visits for patients with CHF and COPD to help reduce ER visits and hospitalizations. I've had meetings with the staff of a program that has been active for about 5 years in another community. It's exciting to start something from the ground up and of course, it's definitely an area that is close to my heart (and lungs)!

Thoughts

I spend many hours alone thinking about death. I know it's inevitable, unpredictable and certain. I accept that. It may be sooner for me because of the COPD, and most likely will be. But I could also be hit by a truck tomorrow. You just don't know. But I think about it while I breathe in my oxygen and pant after everything I do.

Some days I wish it would be soon because I am so tired of fighting to breathe and so frustrated with wanting to do so much and not having the energy and the air to do it. At those times I mostly worry about how I will die. Will it be gasping for air, in pain or extreme anxiety or will someone know to make sure I get good meds. I'm in the process of making a living will but I worry that my wishes won't be carried out. I know how hard it is for families of dying patients to let go. Most days I just carry on, trying to make it better. There's good in every day, I just have to look for it.

One of the best parts of nursing was working with dying patients and their families. I felt honored and humbled to be allowed to share their most important life event. I always felt that I got more in return than I ever gave. What a gift it was to care for them.

I started nursing on an oncology/hematology unit in the 70's. Cancers were much less curable than they are now. It wasn't uncommon to see a woman in her 50's dying of lung cancer that had metastasized to her bones and brain. Leukemia killed most of the young people who came in to our unit with it. 18 year old boys were dying of testicular cancer.

It was during that time that I attended my first Kubler-Ross seminar. She awed me and I was hooked for life. I saw her two more times and met her personally. Her work inspired me. I was left with a life long desire to make a difference for dying patients. In the 80's I attended an international seminar on death and dying in Montreal and met many of the pioneers of that era. I spent years learning all that I could about death and dying and how to control symptoms and how to connect with dying patients and their families. I learned how to be quiet and really listen to what was being said. I just cannot express how much of a gift it has been.

So now that I contemplate my own death, it's not so scary for me - really just the nuts and bolts of it. We've learned so much in the last 40 years, but damn, there are still hold-outs who can't even say the word death and cannot fathom pain and symptom management. Hell, I think I've worked with most of them, and I hope that I've educated a few of them.

For now, I just feel good to be alive. I work hard to accept the limitations I have had imposed on my life and to be grateful that I am so much better than some others.

But I still think about death.

Happy Valentine's Day

I've been posting my rehab progress over on Kasey's Rehab Blog which is on my sidebar. It's been a good experience for me and while I'm doing the baby steps, it's showing in my endurance and ability to do more.

I plan to be here more posting so I hope everyone hasn't given up on me!

January in a nutshell

I cannot believe that it's Feb 1st! I was so busy in January that I hardly noticed it go by...I am back at pulmonary rehab and working hard to increase my strength and endurance. I'm working out on 4 machines and in less than a month I am feeling so much better. Normal people take breathing for granted, but COPDers have to plan for everything from the amount of oxygen we have to take with us to where we park so it's not too long a walk to how much stuff we have to carry. Not to mention the prep time involved before going somewhere ~ I don't leave the house without my paint and spackle on! And how can you go out without a shower? This all takes time, energy and oxygen. BUT by working at building up my muscles, I will make them more efficient so that I need less of my meager supply of oxygen for them so that it can go to the organs that need it the most like the heart and brain. Heaven knows I need that supply to the brain! Better endurance means I can walk farther, carry more and do more. I'm all for that!

Work was terrific in January. We had a great class of students who were so excited about the journey they were embarking on. It makes my job so much easier when students participate and ask questions and want to be there to learn. I think we've really hit our stride with the program and our foundation's goal of sending good qualified caregivers into the community is being met.

This time I didn't teach nutrition, thank goodness. I spent more time on communication and care of the dying and respiratory care. These are my passions. Life was very good in January!

BALANCE

I didn't dare write a post last week - it just would have been gloom and doom and not pretty. My mind kept going into the nooks and crannies of darkness and despair. I'm not exaggerating either. I had this feeling of impending doom all week in the pit of my stomach that wouldn't go away. I felt sick in the beginning of the week but gradually felt better physically, however, I couldn't produce a decent thought that was outside of myself and my own misery to save my life. I would go between anger and depression and back again to just plain down and out and wallow in there.

By the time that I realized that I hadn't refilled my celexa, I had been without it for about a week. I had been thinking that maybe it was time to start weaning off it because I was doing so well, but now I think I better not try that just yet.

I started on it several years ago for depression that was affecting my life. I was having a very hard time dealing with a full time stressful job and a chronic illness that just overwhelmed me. I couldn't sleep and that compounded everything. Celexa helped bring me back into harmony with my life. The relief brought with it an ability to deal with my life and find the goodness in it without dwelling in the negative too long. I still get depressions but I can work my way out and frankly I thought it was more me than the antidepressant. But this recent episode seems to indicate that I still need the med. And maybe learn some more coping skills.

Hey Michael Jordan

I am writing today about Penny over at "I've got a few things to say"(link on my sidebar). Penny is an educated, single mom whose kids are grown and is a hard working and hard playing gal. She is looking for Mr Right. She is tired of dealing with all of the Mr Right Nows.

Penny's posts are usually very witty and deal with life's ups and downs. She has planned her whole wedding with the help of her blogging buddies and you have to check it out - it is seriously funny! She did it all without the hint of a groom present.

Now that Michael Jordan is single again, Penny's friends think that she and Michael would make a great couple. The rest of us are pitching in and putting forth the word that she is available in the hope that a google search will eventually lead him right to her!

You GO girl. Who said there's no romance left in the world....

Resolutions

I don't know if I can adequately describe how I'm feeling. I didn't make any New Year's resolutions, but I seem to be moving forward. We have a new class, and I love teaching them. I love the idea that in some small way, I am helping my community by placing good caregivers out there. It gives me purpose and meaning and I need that. As I've said before, I thought that I had lost that when I quit full time work in 05. What a gift to be given, helping to make a difference somewhere. My passion has always been my work, and I have that again.

I've also started back in pulmonary rehab, working out and helping my body help itself. My lungs may not work so well, but by exercising, I can make my muscles more efficient so that my lungs send more oxygen to my vital organs. Overall, it feels freaking good. Just the baby steps I've taken this year make me feel more alive and useful and a participant in my own life, not just a victim of lung disease. I think I've finally conquered the denial of COPD, constantly trying to pretend I'm ok when I'm not; past the embarrassment of being a healthcare professional who should have known better. I have this and I'm living to the best of my ability with it and now I'm trying to embrace it and move forward and do more despite the limitations of it.

So that's where I am today, just grateful. Stay tuned for my evil twin who always wants the whine with her cheese.

BACK IN THE SADDLE

We're rockin' and rollin' again. I'm back to work this week and I'm exhausted. It's a totally good tired, too. As much as I love to hang around and do nothing but watch TV and movies and eat, I need the real world to keep me going. I need purpose and commitment and people to feel a real sense of well-being.

While I was deep in my journey of self indulgence, I discovered online TV shows. I thought they'd be better than TV because there would be fewer commercials, but alas they also have their share. But it was quite cool to be watching Heroes on my computer. Now I wish I had a laptop! It'd be nice to be all comfy in bed and watch my favorite shows!

I start pulmonary rehab again next week. I am deconditioned and need to work back up so that I don't get so short of breath with every movement. There are other people there with the same problems and we work out on treadmills, bikes, upper body machines and this wonderful invention the Nu-step machine. On the Nu-step, you sit and move your arms like you're cross country skiing and move your legs up and down. It's awesome exercise and the key here is you sit!! I love that machine! I'll be going to rehab twice a week for probably forever. I just can't look at it as forever because then it gets overwhelming for me. But it's something that I have to do to keep myself breathing better.

So the new year is off to a good start. The only dark spot is when I see my pulmonologist next week. I have to find some way to explain the 30 pounds that I gained since I saw him 6 months ago! I don't think he's going to buy my prednisone theory, although it sounds pretty rational to me! I guess I'll have to endure the "look" that always makes me squirm because I've done something wrong...