Winter Again

It's a new year and another winter. Once again I am wondering where the time went and why I don't post more often. It's all in my head, and I have lots to say, but I seldom make myself put it in type. I'm going to be making myself do a lot more this year, including posting.

I am starting to exercise again, which is an important part of my COPD treatment. I can take all of the inhalers and avoid crowds to prevent infections, but if I don't exercise, I will only decline.

Exercise builds muscles, which then work more efficiently, helping to keep oxygen going to the right places and decreases shortness of breath. I know this firsthand. But since exercise was never really a strong component of my life before COPD, it's hard to keep the momentum going now. I don't like to exercise and can come up with a million excuses not to so I have to be careful to keep myself motivated over and over again.

Megan is no longer touring with Matt Nathanson, and is nesting with her husband. It's pure pleasure to see this happen. She's happier and more content than I've seen her in several years. Selfishly, I'm hoping to be a grandmother one of these days very soon.

I've had some serious challenges over the past couple of years, but I think I've come out on the other side only slightly worse for wear. I want this year to be a good one, in which I will be productive and happy and content. It's up to me and I'm up for the work to make it happen.

~Eileen

Guilty Pleasures

Tonight I indulged in one of my favorite guilty pleasures that very few people who know me know about - professional bull riding. I started watching during a time when I was home-bound and bored, having a hard time dealing with my broken bones on top of my COPD. My favorite at this time is Guilherme Marchi, a Brazilian rider who won last year's top spot in the world championship. I would like to see him be the first to win 2 in a row.

It all started innocently enough. I was so bored with television. I spent all of my time at home after I broke my right shoulder and left hip. It was impossible for me to get out except for infrequent vistits to the doctors so I was at the mercy of people who would visit me and the television for entertainment. Ha! I consider myself a fairly intelligent person, and finding something that held my interest for an hour was really a challenge. I watched the PBR and it made my heart beat faster. At first, I was thrilled with the prospect of a wreck. Those were awful and I was so impressed with how they came back so soon after devastating injuries. I continued watching it and I began rooting for particular cowboys that sparked my interest. Eventually, I learned what it was all about and began to admire the cowboys for their ability. They really are athletes!

This has all led me to watching Dancing With the Stars because Ty Murray, a bull riding hero, is competing. I voted for him 13 times by cell phone in the first 2 weeks! You have to understand, I don't EVER do this for ANYONE on ANY TV show.

So what started as a diversion, has turned into an obsession and a very happy guilty pleasure! I watch every week and follow the riders from week to week to see how they are doing. Don't tell anyone, but if someone calls me during a show, I ignore it!

It's been a while since I posted to this blog. I seemed to have lost my voice for a while but I'll be working on that.

I was having a good couple of weeks with my breathing, but all of a sudden today it feels like I'm breathing through water. This merry go round is making me dizzy, the good days and the bad ones. But at least I had those two weeks!

My brothers gave me the greatest gift for Christmas: their time and tickets to see Kris Kristofferson. Kris is a long time hero of mine and I've been listening to his music since the 70's. So last Sunday we three went to a concert. And it was awesome! It was killer getting from the car to the theater, and we had to drive me eventually because I just wasn't good at walking through the snow and I ran out of breath long before we got there. The show was worth the effort and it was better than old times, being with my brothers.

Redemption

My brother-in-law died. He spent a portion of his life being one of the biggest asses in the country. He was an alcoholic with a bad attitude and the ability to anger and alienate anyone in his path.

However, he spent the past 28 years living sober, and giving back in incredible ways. He built a business and became successful, providing jobs and opportunities to many people. He always helped family with taxes for free. He helped his entire family, and I add extended family to that, both with support and financing through their various struggles and hardships. He formed amazing bonds with his family that will be remembered forever.

I will never know how many people he's guided through recovery in AA. For many years, his home was open to struggling members who needed a hand up. He was a dedicated sponsor and leader for all of the past 28 years.

He did all this and more with unbelievable humility and modesty. It was HARD to get him to accept a thank-you; he never did it for recognition. Some would say he was arrogant, and I can agree to an extent, but it hid a heart that was bigger than anyone knew.

If anyone has earned the respect and love of multitudes of friends, business associates and family, he has. I have no doubt that he's breathing easy somewhere in the light. I hope he knows how much I came to care about him and how much I admired and respected his incredible road to redemption.

A Better Day

I guess it's safe to say that things are better in my head. Thank-you, Dee, for the encouragement, I really appreciate it. Sometimes my mind just can't help taking a trip toward the darker side and it's a bitch getting stuck there.

I've started making a conscious effort to get out of here every day, even if it's just for a little PT Cruising. It's helped me a lot to get out of my own head and see other people and other places besides myself and my apartment. My world has been so small for the past few years, and most especially, the past year.

I am now independent with everything with few exceptions. I still can't go into stores because I'm not walking very far, but for everything else, it's all good. I've come such a long way over the past year, and I am truly grateful that I'm healing and breathing better. I tend to lose sight of that when I get down on myself and my situation. When I think about it, I know that I'm so much better off than many people.

So healthwise, for me things are definitely on the upswing, and each day is another new beginning, with new challenges and possibilities. I am working hard at being the best me I can be, and I hope that family and friends will forgive past no-shows due to illness and injury. It's been a lonely couple of years and I'm eager to participate more in life again.

An Awful Year

I see that it's been a while since I posted anything. I might not post this one, but I have to write it.

It was a year, on August 25th, since I had fallen and broken my hip and my shoulder. It was on May 12 that I had the surgery on my hip. I was doing well and progressing steadily when I was told by the surgeon that I had to back off a little because the hip hasn't shown adequate healing yet. I knew that it could take up to 6 months to heal, but I didn't imagine the emotions that would come with the prolonged healing.

It's been just over 2 weeks since I was told to stop using the cane if I feel any pain. My spirits have gone steadily downhill since then because I feel pain every time I use the cane.

I am so tired of being home, not able to work, dependent on neighbors for shopping and being so short of breath. I feel like I live the life of someone just waiting to die. I want to swear, hit something, throw things, break everything breakable in sight. Instead, I sit here holding it all tight inside. I am the cheerleader for COPD and the picture of patience. Ha! I'm a seething cauldron of disappointment and fear for my future.

So I constantly beat myself up for not doing things. I could do more exercises, I could clean more, I could do something, anything, that would boost my spirits. Read a book, cook something, call someone. But I can't make myself do anything. And I hate myself for that.

There. I'll let you know if that helped.

Questions after the fact

I had my surgery and came out on the other side intact. A couple of days of not remembering too much, a week of rehab, and then home to begin serious rehab.

I am so grateful that my respiratory status was okay during all of this, and now after a couple of months, I've been told by my surgeon that I can weight bear and begin to walk!

Now what? I was so happy after surgery, feeling less pain, and ready to move forward. Now I wonder what will happen after I can walk, and I am still left with crappy lungs. Once I can walk, will I still be paralyzed with the inability to breathe? Will I still gasp for air with every step I take? Those things can be such torture in and of themselves. Will I work and work and get my legs back only to be too tired from breathing to move?

Well, these questions remain unanswered, and only time will tell. I hope that with hard work, I will be rewarded with better breathing as a side effect.

Off to see the wizard

After 9 long months, I am finally having surgery on my hip. I'll have a bone graft and a total hip replacement on May 12. Am I nervous? You bet! I'm handling it with all of the bravado I can muster. It's time to put it in someone else's hands now and go with the flow.

The nurse in me knows everything that could go wrong but the spirit in me knows I'm a fighter and will do the best I can.

I'll be back on the other side of surgery!

Sticks and Stones

Just a quick note to explain where I've been. Ironically, my last entry was on August 25th. That was the same day that I tripped in my livingroom and broke my right shoulder and left hip.

The fracture in my left hip wasn't diagnosed until 10 days after my ER visit, and after I had walked for almost a week on it, causing major damage. I had to wait until there was some healing before they would consider surgery and now after 6 months, I have to have some major reconstruction done to the hip. And then I am told it will be another 4 - 6 months before I can do any weight bearing on it.

The past 6 months have been painful, frustrating and very discouraging. Often during this time, it was hard to see the light at the end of the tunnel or even the tunnel itself.

I think I've managed to get to this point with my mental state only slightly worse for wear and plan to have surgery soon. I haven't been writing because it's been too painful to sit at the computer for any length of time and frankly, I'm tired of talking about me. So I will save my story for another time.

But if you are reading this, please say a quick prayer for me that I get through this ordeal with 2 legs to stand on and my mind intact!

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)!