Today, or since the hour is late, more appropriately, yesterday, my ex brother-in-law got remarried. From what I've heard, to a wonderful girl named Lauren. I am truly happy for him and wish him nothing but the absolute best. My nephews still live at home with him and from what I've gathered, they seem to really like her and that is good. They all live in a big house with his parents as well, although I don't know for how much longer. I do know he and his new bride were looking for a house in another town close by and selling their respective houses. Not sure where his parents will go since they are getting up in years.
After all is said and done, I really miss them. For many years they've been family to me. Funny how that happens in divorces. Sometimes the ones caught in the crosshairs have little to do with what happened and even less knowledge about it and yet they're cut out too. It wasn't done maliciously, mostly because we lived in different parts of the country and talking seemed awkward at best and downright disloyal at times, although it shouldn't have been thought that way. I don't know the detail of the breakup between my sisiter and her husband. She never volunteered the info and I never asked. A few times he called me trying to get info that I honestly didn't have, so I of course got dragged into it kicking and screaming. Sad thing is that I loved them both - and all their warts and flaws. I could see both sides. I hoped they could work it out and yet knew somehow that wasn't going to happen.
I'm glad he moved on. I'm glad he found someone that he feels he can spend the rest of his life with. I hate being on the outside. I love his parents - they became like parents to me too since mine had long since passed away. I'd love to call them and one of these days I will. I just wanted the wedding to be behind - somehow I think it will make it easier. Plus it will give us something to talk about. I hope his new bride treats him well, I hope he finishes projects he agrees to do for her. I hope they do things together, as a family, and find time to laugh. The boys are older now with lives of their own but I hope that they forge memories that will last a lifetime. I love them all. I didn't divorce them, although sometimes it feels like I was forced to sign papers to stay away. I hope that's not the case. We'll see.
So Cheers, my friend, as you embark on the next chapter of your life. May the road be smooth enough to sail into the sunset but bumpy enough to add interest along the way. ((hugs)) and love to my "old" family. Miss you and can't wait to see the pictures. God Bless.. <3 <3 <3 Congratulations to the groom; best wishes to the bride.... always.
Saturday, April 16, 2011
Friday, April 15, 2011
Pulmonary Fibrosis and Why We Need Prayer
A Snapshot of the Disease
That's the factual side. There is a whole other personal side as well. I live with this, day in and day out. I cannot turn it off or walk away from it. Each day I see it progressively robbing more and more of my life - more and more of me. It started a few years back when I noticed that I seemed to be getting winded much quicker than I ever had before. At first I just chalked it up to being overweight and getting a little older. I mentioned it to my doctor but he didn't seem too concerned, so neither was I. It kept getting worse and somewhere along the way, I picked up a little cough. It wasn't producing anything and it wasn't all the time, but it was there. My doctor showed a little more concern at that time and ordered a chest x-ray. Not particularly liking what he saw, he referred me to a pulmonologist who did a complete work up. My PFT's (pulmonary function tests) were down but nothing too alarming. He instructed me to lose weight and exercise more. So that's what I tried to do. I did lose a significant amount of weight (50 lbs) in a year but still my breathing was rough, so my primary sent me back to the pulmonologist. He again did the tests and they were down a bit more. My logic was that if it was due to weight, shouldn't they have improved or at the very least stayed the same? He did a CT scan but still attributed it to my weight - and not very nicely. Pretty much telling me my breathing problems were all in my head. Needless to say, I left there in tears vowing never to go back.
In the fall of 2008, I was scheduled to have carpal tunnel surgery and was going through the normal pre-op work up when something caught the attention of my doc on the EKG. He sent me for a complete cardio-pulmonary work up before he would sign off on okaying the surgery. Cardio came through fine but we ran into problems with the pulmonary. Ironically enough I had to go back to the office, that I vowed never to go in again, due to time constraints. I didn't have enough time before surgery to find a new pulmonologist. Mercifully I didn't have to see the same doc, but his partner. This time when they did the PFT's they were significantly reduced and everything else was stopped so that they could pursue that. The next few months led me through more CT scans, a bronchoscopy, alveolar lavage, and an open lung biopsy a week before Christmas. It was from that biopsy being sent to Mayo Clinic that I got my diagnosis and was delivered the news of a death sentence.
A month after the biopsy, I was able to finally join my husband in Tennessee and my records were transferred to Vanderbilt. While there is normally an eight to twelve month wait to get in to see them, I was able to see them within two months. For the last two years, they have tried different drugs to see if they could come up with some combination that would stall or slow the progression of the disease down. I have had bad reactions to each and every one and none of them helped with slowing it down. Since they weren't helping and were making me so sick, I've been taken off all but a maintenance dose of prednisone, partly in hopes of getting me ready for a lung transplant.
For the last 6 months, I've been going through testings and appointments to see about qualifying for a lung transplant. Things were moving along pretty well until last month when I lost my insurance because my COBRA ran out. I have automatically been disqualified from pursuing a lung transplant. I'm ok with that though, because I really wasn't sure that was the route I wanted to go anyway. Lung transplantation opens up a whole other can of worms and hardships - that will be another blog itself.
I'm struggling day by day. It's getting harder to breathe and I am having to use oxygen pretty much most of the time. I sleep with it all night, I cannot leave the house without it and whenever I do anything around the house, I have to have it on. If I'm just sitting here quietly on the computer, I try not to put it on, but even then there are times I must. It's hard on Oliver to watch his once very vibrant, active wife, just sit there sometimes gasping for breath. It's hard for me not to panic during those times, knowing that the day will come when I won't be able to recover. It's not so much the dying that scares me, but the suffocating and choking to death that does.
The lack of oxygen flowing through my blood is affecting other parts of my body as well. I have become quite forgetful and that is worrisome to me. I literally can watch something on tv and an hour later not remember watching it. I forget when I've talked to people or when I go into another room, what I went in there for. I feel like that email that's been circulating for years about going to do one thing, getting distracted, etc. until you're right back where you started. That's not so funny to me anymore. My heart is stressed and it's beats are numbered. Sometimes it even hurts. Pain is magnified because the oxygen is not getting around the way it needs to. I sometimes fall asleep mid-sentence in a conversation. Falling asleep in church has become pretty standard. On my chair, daily. Oliver doesn't even try to wake me up anymore, he just turns off the light and covers me up. On the flip side, I have trouble sleeping at night. I can only get a couple of hours in at a time and it's fitful at best. Sometimes I'm just afraid to go to sleep, wondering if I'll wake up. I'm watching my life slip away and there is nothing I can do to stop it. I fight as hard as I can but I'm losing ground.
That's where the prayers come in. Somehow in the midst of all this struggle, I'm able to find peace and that's due to the prayers of friends and family. I know it's too late for a cure to be found in my lifetime. I'm a realist. But I do have a son and grandson that I care deeply for that I would hate to worry about them having to deal with this. I watched my own mom die a slow, painful death of what I think was the same thing I have - our symptoms are the same, but they didn't really know too much about PF back in 1974. It's hard enough to get the diagnosis today. We need God to step in. We need the funding for research so that treatments and ultimately a cure can be found. This deadly disease affects far more than you can imagine - both directly and indirectly. As you pray for me and my family, I too am praying that it does not touch yours but if it does, I pray a cure can be found swiftly so that you don't have to walk in the shoes that I've had to walk in and the ones that so many before me have. If you don't think your prayer can make a difference, think about this... a snowflake all by itself doesn't amount to much of anything, but look what happens when a bunch of them stick together. : ) Thanks and God Bless.
- The disease affects 200,000 Americans; alarmingly prevalence has increased as much as 150% percent since 2001
- The median survival rate is only 2 to 3 years, and more than 2/3 of patients will die within 5 years
- There is no FDA-approved treatment or cure for IPF
- An estimated 40,000 people die each year from IPF – one every 13 minutes (the same number that die annually from breast cancer)
- An estimated 48,000 new cases are diagnosed each year
- IPF can affect anyone, but the disease tends to affect men more than women; the mean age at the time of diagnosis is 60-70 but can occur at any age
- IPF is 5 to 6 times more common than cystic fibrosis, yet it remains virtually unknown to the public, many policymakers, and even some physicians
That's the factual side. There is a whole other personal side as well. I live with this, day in and day out. I cannot turn it off or walk away from it. Each day I see it progressively robbing more and more of my life - more and more of me. It started a few years back when I noticed that I seemed to be getting winded much quicker than I ever had before. At first I just chalked it up to being overweight and getting a little older. I mentioned it to my doctor but he didn't seem too concerned, so neither was I. It kept getting worse and somewhere along the way, I picked up a little cough. It wasn't producing anything and it wasn't all the time, but it was there. My doctor showed a little more concern at that time and ordered a chest x-ray. Not particularly liking what he saw, he referred me to a pulmonologist who did a complete work up. My PFT's (pulmonary function tests) were down but nothing too alarming. He instructed me to lose weight and exercise more. So that's what I tried to do. I did lose a significant amount of weight (50 lbs) in a year but still my breathing was rough, so my primary sent me back to the pulmonologist. He again did the tests and they were down a bit more. My logic was that if it was due to weight, shouldn't they have improved or at the very least stayed the same? He did a CT scan but still attributed it to my weight - and not very nicely. Pretty much telling me my breathing problems were all in my head. Needless to say, I left there in tears vowing never to go back.
In the fall of 2008, I was scheduled to have carpal tunnel surgery and was going through the normal pre-op work up when something caught the attention of my doc on the EKG. He sent me for a complete cardio-pulmonary work up before he would sign off on okaying the surgery. Cardio came through fine but we ran into problems with the pulmonary. Ironically enough I had to go back to the office, that I vowed never to go in again, due to time constraints. I didn't have enough time before surgery to find a new pulmonologist. Mercifully I didn't have to see the same doc, but his partner. This time when they did the PFT's they were significantly reduced and everything else was stopped so that they could pursue that. The next few months led me through more CT scans, a bronchoscopy, alveolar lavage, and an open lung biopsy a week before Christmas. It was from that biopsy being sent to Mayo Clinic that I got my diagnosis and was delivered the news of a death sentence.
A month after the biopsy, I was able to finally join my husband in Tennessee and my records were transferred to Vanderbilt. While there is normally an eight to twelve month wait to get in to see them, I was able to see them within two months. For the last two years, they have tried different drugs to see if they could come up with some combination that would stall or slow the progression of the disease down. I have had bad reactions to each and every one and none of them helped with slowing it down. Since they weren't helping and were making me so sick, I've been taken off all but a maintenance dose of prednisone, partly in hopes of getting me ready for a lung transplant.
For the last 6 months, I've been going through testings and appointments to see about qualifying for a lung transplant. Things were moving along pretty well until last month when I lost my insurance because my COBRA ran out. I have automatically been disqualified from pursuing a lung transplant. I'm ok with that though, because I really wasn't sure that was the route I wanted to go anyway. Lung transplantation opens up a whole other can of worms and hardships - that will be another blog itself.
I'm struggling day by day. It's getting harder to breathe and I am having to use oxygen pretty much most of the time. I sleep with it all night, I cannot leave the house without it and whenever I do anything around the house, I have to have it on. If I'm just sitting here quietly on the computer, I try not to put it on, but even then there are times I must. It's hard on Oliver to watch his once very vibrant, active wife, just sit there sometimes gasping for breath. It's hard for me not to panic during those times, knowing that the day will come when I won't be able to recover. It's not so much the dying that scares me, but the suffocating and choking to death that does.
The lack of oxygen flowing through my blood is affecting other parts of my body as well. I have become quite forgetful and that is worrisome to me. I literally can watch something on tv and an hour later not remember watching it. I forget when I've talked to people or when I go into another room, what I went in there for. I feel like that email that's been circulating for years about going to do one thing, getting distracted, etc. until you're right back where you started. That's not so funny to me anymore. My heart is stressed and it's beats are numbered. Sometimes it even hurts. Pain is magnified because the oxygen is not getting around the way it needs to. I sometimes fall asleep mid-sentence in a conversation. Falling asleep in church has become pretty standard. On my chair, daily. Oliver doesn't even try to wake me up anymore, he just turns off the light and covers me up. On the flip side, I have trouble sleeping at night. I can only get a couple of hours in at a time and it's fitful at best. Sometimes I'm just afraid to go to sleep, wondering if I'll wake up. I'm watching my life slip away and there is nothing I can do to stop it. I fight as hard as I can but I'm losing ground.
That's where the prayers come in. Somehow in the midst of all this struggle, I'm able to find peace and that's due to the prayers of friends and family. I know it's too late for a cure to be found in my lifetime. I'm a realist. But I do have a son and grandson that I care deeply for that I would hate to worry about them having to deal with this. I watched my own mom die a slow, painful death of what I think was the same thing I have - our symptoms are the same, but they didn't really know too much about PF back in 1974. It's hard enough to get the diagnosis today. We need God to step in. We need the funding for research so that treatments and ultimately a cure can be found. This deadly disease affects far more than you can imagine - both directly and indirectly. As you pray for me and my family, I too am praying that it does not touch yours but if it does, I pray a cure can be found swiftly so that you don't have to walk in the shoes that I've had to walk in and the ones that so many before me have. If you don't think your prayer can make a difference, think about this... a snowflake all by itself doesn't amount to much of anything, but look what happens when a bunch of them stick together. : ) Thanks and God Bless.
Saturday, April 9, 2011
My Rope is Unraveling
"When you get to the end of your rope, tie a knot and hang on." I've heard that quote all my life. I've also heard the Christian version - "When you get to the end of your rope - let go and let God." Words. You read them and you nod as they make some sense somewhere in the recesses of your mind. Then life throws you curve ball after curve ball and they are no longer just words but become your life's mission. I gotta admit my rope is unraveling and the finger nails that I have been hanging on with the last bit of my being are cracking, splitting, peeling and breaking. I'm done.
I've been through a lot in my life. Through more things than I even care to bring to the forefront of my mind and I have always been an overcomer and come back stronger. For the first time in my life, I feel knocked down and not sure I have the energy to get back up. I know all the verses in the Bible that are there to bring me encouragement and hope and I try, really try, to let them rise up in me and help me stay afloat, but lately that's becoming harder and harder for me to do. It's spring, with all it's growth and fullness and promise of warmer weather to come. Usually a time of year that I'm outside soaking up every ray of sun that I can get, puttering in the yard, getting that feeling of satisfaction of a job well done and the kind of ache in your muscles that you just KNOW you've put in a good day's work. I just don't have the energy anymore, or the strength. I sit in my chair looking at all the things that need to be done and then just have to look away. I can't do it anymore.
I just feel like such a burden. My expenses are high and I am unable to generate any income at all. I've been denied social security disability many times - first because I didn't have the correct diagnosis and they didn't think I was sick enough, now because I don't have enough recent credits - and I've been told there is nothing more I can do until I am 65. I won't make it to 65. It's only by the grace of God that I've made it to 55. Pulmonary Fibrosis does not let you live that long. We don't know the cause of my PF and mercifully it doesn't seem to be the fast acting kind but it's eating my body away none-the-less. Without being declared disabled by SS or a senior by age alone, I am not qualified to receive any state assistance either. I now have no health or life insurance since my COBRA has run out. I am uninsurable. Oh there is ONE company willing to underwrite a policy for me for $2300 a month and a $5000 deductible. No can do on only $1500 in social security that my husband is able to now able to draw. And we do thank God for that. Problem is that it is not enough. Not with the mortgage alone being $1000 a month. That leaves $500 a month for food, utilities, medicines, life....
I feel like I have become a burden to the world and mostly to my husband. It's hard because we have both worked so hard all our lives and played by the rules. We have never cut corners or reached beyond our means. Honestly I don't remember even once where I haven't bought something on sale. We've been good stewards of what we've had. We've taken only three vacations in 32 years. We're just now, in the last few years, homeowners. And we're losing it all. Our savings is gone, our credit cards are maxed out and we're living in a deficit every month. We'd sell the house, but we cannot get near enough out of it to break even. We're here until they kick us out and then truthfully, don't know where to go. My meds, with insurance, ran about $350 a month and I don't even want to know what the cost will be now without insurance. I'm good for another month or so because I stocked up as I could. My oxygen alone - the home concentrator and portable tanks - run about $600 a month. I haven't even been able to pay the co-pay, let alone the full bill. I have collection agencies calling each day - and mercifully they're mostly recordings and somehow easier to hang up on. I just don't have it to pay them. It stresses me no end. I've become one of "those people."
We went out on a limb and bought a portable oxygen concentrator through a friend on facebook. She was great and gave me a really good deal. Problem is that now that we got it, it doesn't work. I don't for one minute think she sent me an unworking maching on purpose - her dad died from Pulmonary Fibrosis - but whether it was because her boyfriend used an unauthorized charger or something happened in transit, I don't know. We used every penny of our income tax refund to buy it - $1100. I need to send it in to be fixed but I don't know where and quite frankly don't have the money. So now I'm feeling guilty for having had the need to spend what little money we had for medical equipment that doesn't work. Sigh. Gratefully they haven't pulled my other machines but I'm sure that day is coming as soon as they know that they won't be getting any money from my old insurance company.
I feel bad for Oliver. He's had to retire. One, he just hasn't been able to find another job here in the last year and a half and now, quite frankly, I think he's afraid to leave me alone. The lack of oxygen to my brain has affected my mind. I do get forgetful and moving about the house has become more difficult. I will only take a shower or bath when I know he's in the house because I lose my balance so easily and I don't want to become like one of those commercials where "I've fallen and can't get up." Thanks to the goodness of friends, I now wear a medical bracelet that has my whole medical history on it so if something was to happen and Oliver isn't close by, medical personnel can access the info and treat me accordingly. That is a great peace of mind.
Somewhere in all this I've lost me. I can no longer be or do the things that I loved to do. The physical things because I don't have the oxygen enough to make my body run efficiently and the mental things because my mind is slipping into an abyss of darkness that I'm afraid one day I won't be able to come out of. My emotions are raw and I find it harder and harder to just laugh each day. I sit here and look at the dust piling up on the furniture and am helpless to do anything about it. Occasionally I do have a burst of energy and am able to take the duster and move it around, but those days are far and few between. Mostly I have to fight the urge to just write "sorry" in the dust. Oliver has been great about doing what he can around here but let's face it - his idea of clean and mine are not exactly the same. I appreciate his efforts, I feel guilty because all I can do is watch him. I see the stress aging him and that makes me feel terrible. He feels helpless because he can't make me better. We thank God for Charlie as a way to break up the stress.
There are days when just the action of getting up and getting myself a glass of water is enough to take my breath away for over an hour. If you were to see me sitting here and were here in my living room, you'd probably not even know I was sick - unless of course you looked at the oxygen paraphenalia that is flanking me. I can even sit here and hold conversations and be fine. But let me get up to go to the bathroom and by the time I come back, I'm sucking on that oxygen tubing to beat the band. I'm down because I no longer have any medical support. For all intensive purposes, Vanderbilt has "fired" me because I no longer have insurance. I can't get any financial assistance from them because - get this - Oliver draws social security and that's too much income for two people with no children under 18 at home. Yeah well, I'm certainly not going to try and have a kid now just to get some assistance from Vanderbilt - even if that were even physically possible.
I do have my local Physician's Assistant who helps me keep my prescriptions current but she really doesn't know what to do for me beyond that. My disease is way out of her area of expertise and she's too busy with the everyday ills of her other patients to find out. I have tried every program, every company, every foundation, every everything that I've been able to find in my research to try and get help and have come up with nothing. Oh they all feel my pain, but are helpless according to their "rules". We couldn't even get food stamps. I literally feel my life slipping away inch by painful inch. I do not feel like a contributing member of society anymore and that hurts the most. I've become a burden and that is certainly not something this independent woman of Scottish and Norwegian descent ever thought would happen. My world has fallen apart and I can no longer seem to cling to the rope that I've been on for 55 years. I feel like I'm pulling the people around me down with me. Lately it's been hard to wake up in the morning. Where once it was "Thank-you God for another beautiful day and another chance at life", it's now become "Oh God, I'm still alive, now what?"
My lifeline has been the computer and quite frankly, facebook. Just being able to keep in touch with others and to see them living their lives makes my whole day. I play Farmville and FarmTown and they help me with pain management. I'm able to research and be able to make informed medical decisions on my own, which has come in handy since I no longer have doctors to help me do that. My days aren't all doom and gloom, I do smile. I try, I really do try, to find the good side of things and hang on to those. I don't know how much longer I have on this round sphere we call earth or what my purpose is, but for whatever reason, I guess God isn't ready for me yet. It's hard to have to live in a bubble of sorts. What is a simple cold to someone can literally kill me if I catch it. I've had two PF friends who that exact thing happened to within the last month and I've heard story after story of others who have lost loved ones that quickly to this disease. It's like living as a ticking time bomb. You can be toodling around seemingly fine one day and gone the next. It's hard to live with that on your shoulders. It's hard knowing on the days that I'm struggling to breathe even with the oxygen that the day will come when I will no longer recover. It's hard not to panic and something I'm really working hard on. It's hard to know that at any point, because I also have pulmonary hypertension, that my heart can just blow out. There is a fine line between getting the exercise you need and overdoing it. Getting it wrong can literally be a killer. That's a lot of pressure - literally and physically.
I admit that I am overwhelmed. I'm a fighter and have been all my life but the fight is slowly fading out of me. Between the physical assault on my body and mind and the financial stresses and the concern about what the future (if I have any future left) holds. We've come to the conclusion that it may be time to leave Adamsville. Truth be told, the idea of living closer to my grandson and the beach is sounding better and better each day. It won't be easy. First we have to try and get out of this house. Our credit is ruined from the medical bills that have piled up and we haven't been able to pay plus the fact that our credit cards are now maxed out - from everyday living expenses. And we have no idea how we'd pay to get our stuff down there or whether we'll even be able to rent a place. So many unknowns. I'll hate to leave here because I have loved it so but I don't feel I belong here anymore. Friendships have waned and been stressed because it's hard on them when you have to live with these circumstances. I can't blame them for not coming around - it's hard to watch me struggle for things everybody takes for granted. It's hard for Oliver to watch and except for the times he takes Charlie for a walk, he has to. It's hard on my son, Dan, who doesn't even call because quite frankly, he doesn't know what to say. It hurts that he doesn't call, but I do understand. I can no longer hide the dark sides of this disease. I can't hide the pain as I grimace from movement and I certainly can't hide the times that I have to hook up to the oxygen, which has become more and more frequent. I even have to sleep with it now. We do still have our small group from church and they are wonderful. They bring a smile to my face and make me feel just a little bit human for a couple of hours every couple of weeks. We love them.
The good thing about being let go from Vanderbilt is that I no longer have to worry about living within 3 hours of Nashville. Since being automatically disqualified for a lung transplant due to no insurance, that option is off the table and that was the only option I had of beating this thing called Pulmonary Fibrosis. But that leaves us free to literally move wherever we want to, well, at least in our heads. There are days when I'd love to be down by the beach near my grandson and then there are other days when I'd just like to get a motorhome and go check things off my bucket list. Away from the collection agency calls, away from all those things that keep you tied to terra firma. As long as we would be able to have a satellite hookup for tv and internet, we'd be set. I might even be able to assist in keeping a motorhome clean - much less overwhelming than the house. There are days when I dream of something as simple as owning a Motorola XOOM e-tablet. Since I like to read it would be neat to have a tablet to be able to do that with. It would be nice to be able to curl up in my chair and do all the things on the internet that I do. The laptop is just too heavy for me and awkward to do that with. I'd love to go on a cruise. I'd be happy living on a houseboat but I'm not sure Oliver could stomach it. I'd love to visit Hawaii but since flying can severely compromise my lungs, that option is definitely out. I know I wouldn't be able to just swim from Los Angeles to Honolulu - and back. Then I realize that these are ALL dreams that may never come true. Right now, in reality, I can only dream that the electric, water, food and meds are paid for today.
I mourn not being able to do all the things that I always thought I'd have later to do. I worked hard, sometimes too hard, and set aside my dreams and aspirations to be with my family. I always thought that I'd be able to travel when we retired and to have a nice house and be able to get a new car every 5 or 6 years or so. I'll never experience that new car smell again - well, unless I just go sit in one at the dealership. Quite frankly, I may not be able to do that since all kinds of smells now literally take my breath away. I hate the stares I get from people on those rare occasions when I do venture out. Most people are merciless, thinking I did something to myself that caused me to be sick - like it was my choice to be this way. I didn't. I hate that kids now feel they have to hide behind their parents because they are afraid of the oxygen tanks and tubing, which make me sound like Darth Vader. That breaks my heart because I have always loved kids and had a special connection with them. Where once I saw smiles, now I only see fear.
I'm not looking to invite anyone to my pity party. I don't even stay here long myself, if I can help it. Quite frankly, I don't even know what more I want out of life. I guess my biggest thing would be to have some kind of security. I'd like to put all my concentration into fighting this disease and into believing that perhaps, just perhaps, the doctors got it all wrong and I have something else - something curable. I'd like to beat the odds that are stacked up against me. That is my daily prayer. That somehow, some way, SOMETHING will just turn out ok. That at least one area in my so called life would just settle down and not be stirred. I'd like some calmer waters, please. In the meantime, I'll look out the dirty window at the sunshine and the trees and grass greening up and remember that there are seasons in everybody's life and that even winter can only hang on so long. Perhaps the rope unraveling is a good thing after all. Maybe, just maybe, it will be the opportunity to change the grip that will make all the difference. I sure hope and pray so.
I've been through a lot in my life. Through more things than I even care to bring to the forefront of my mind and I have always been an overcomer and come back stronger. For the first time in my life, I feel knocked down and not sure I have the energy to get back up. I know all the verses in the Bible that are there to bring me encouragement and hope and I try, really try, to let them rise up in me and help me stay afloat, but lately that's becoming harder and harder for me to do. It's spring, with all it's growth and fullness and promise of warmer weather to come. Usually a time of year that I'm outside soaking up every ray of sun that I can get, puttering in the yard, getting that feeling of satisfaction of a job well done and the kind of ache in your muscles that you just KNOW you've put in a good day's work. I just don't have the energy anymore, or the strength. I sit in my chair looking at all the things that need to be done and then just have to look away. I can't do it anymore.
I just feel like such a burden. My expenses are high and I am unable to generate any income at all. I've been denied social security disability many times - first because I didn't have the correct diagnosis and they didn't think I was sick enough, now because I don't have enough recent credits - and I've been told there is nothing more I can do until I am 65. I won't make it to 65. It's only by the grace of God that I've made it to 55. Pulmonary Fibrosis does not let you live that long. We don't know the cause of my PF and mercifully it doesn't seem to be the fast acting kind but it's eating my body away none-the-less. Without being declared disabled by SS or a senior by age alone, I am not qualified to receive any state assistance either. I now have no health or life insurance since my COBRA has run out. I am uninsurable. Oh there is ONE company willing to underwrite a policy for me for $2300 a month and a $5000 deductible. No can do on only $1500 in social security that my husband is able to now able to draw. And we do thank God for that. Problem is that it is not enough. Not with the mortgage alone being $1000 a month. That leaves $500 a month for food, utilities, medicines, life....
I feel like I have become a burden to the world and mostly to my husband. It's hard because we have both worked so hard all our lives and played by the rules. We have never cut corners or reached beyond our means. Honestly I don't remember even once where I haven't bought something on sale. We've been good stewards of what we've had. We've taken only three vacations in 32 years. We're just now, in the last few years, homeowners. And we're losing it all. Our savings is gone, our credit cards are maxed out and we're living in a deficit every month. We'd sell the house, but we cannot get near enough out of it to break even. We're here until they kick us out and then truthfully, don't know where to go. My meds, with insurance, ran about $350 a month and I don't even want to know what the cost will be now without insurance. I'm good for another month or so because I stocked up as I could. My oxygen alone - the home concentrator and portable tanks - run about $600 a month. I haven't even been able to pay the co-pay, let alone the full bill. I have collection agencies calling each day - and mercifully they're mostly recordings and somehow easier to hang up on. I just don't have it to pay them. It stresses me no end. I've become one of "those people."
We went out on a limb and bought a portable oxygen concentrator through a friend on facebook. She was great and gave me a really good deal. Problem is that now that we got it, it doesn't work. I don't for one minute think she sent me an unworking maching on purpose - her dad died from Pulmonary Fibrosis - but whether it was because her boyfriend used an unauthorized charger or something happened in transit, I don't know. We used every penny of our income tax refund to buy it - $1100. I need to send it in to be fixed but I don't know where and quite frankly don't have the money. So now I'm feeling guilty for having had the need to spend what little money we had for medical equipment that doesn't work. Sigh. Gratefully they haven't pulled my other machines but I'm sure that day is coming as soon as they know that they won't be getting any money from my old insurance company.
I feel bad for Oliver. He's had to retire. One, he just hasn't been able to find another job here in the last year and a half and now, quite frankly, I think he's afraid to leave me alone. The lack of oxygen to my brain has affected my mind. I do get forgetful and moving about the house has become more difficult. I will only take a shower or bath when I know he's in the house because I lose my balance so easily and I don't want to become like one of those commercials where "I've fallen and can't get up." Thanks to the goodness of friends, I now wear a medical bracelet that has my whole medical history on it so if something was to happen and Oliver isn't close by, medical personnel can access the info and treat me accordingly. That is a great peace of mind.
Somewhere in all this I've lost me. I can no longer be or do the things that I loved to do. The physical things because I don't have the oxygen enough to make my body run efficiently and the mental things because my mind is slipping into an abyss of darkness that I'm afraid one day I won't be able to come out of. My emotions are raw and I find it harder and harder to just laugh each day. I sit here and look at the dust piling up on the furniture and am helpless to do anything about it. Occasionally I do have a burst of energy and am able to take the duster and move it around, but those days are far and few between. Mostly I have to fight the urge to just write "sorry" in the dust. Oliver has been great about doing what he can around here but let's face it - his idea of clean and mine are not exactly the same. I appreciate his efforts, I feel guilty because all I can do is watch him. I see the stress aging him and that makes me feel terrible. He feels helpless because he can't make me better. We thank God for Charlie as a way to break up the stress.
There are days when just the action of getting up and getting myself a glass of water is enough to take my breath away for over an hour. If you were to see me sitting here and were here in my living room, you'd probably not even know I was sick - unless of course you looked at the oxygen paraphenalia that is flanking me. I can even sit here and hold conversations and be fine. But let me get up to go to the bathroom and by the time I come back, I'm sucking on that oxygen tubing to beat the band. I'm down because I no longer have any medical support. For all intensive purposes, Vanderbilt has "fired" me because I no longer have insurance. I can't get any financial assistance from them because - get this - Oliver draws social security and that's too much income for two people with no children under 18 at home. Yeah well, I'm certainly not going to try and have a kid now just to get some assistance from Vanderbilt - even if that were even physically possible.
I do have my local Physician's Assistant who helps me keep my prescriptions current but she really doesn't know what to do for me beyond that. My disease is way out of her area of expertise and she's too busy with the everyday ills of her other patients to find out. I have tried every program, every company, every foundation, every everything that I've been able to find in my research to try and get help and have come up with nothing. Oh they all feel my pain, but are helpless according to their "rules". We couldn't even get food stamps. I literally feel my life slipping away inch by painful inch. I do not feel like a contributing member of society anymore and that hurts the most. I've become a burden and that is certainly not something this independent woman of Scottish and Norwegian descent ever thought would happen. My world has fallen apart and I can no longer seem to cling to the rope that I've been on for 55 years. I feel like I'm pulling the people around me down with me. Lately it's been hard to wake up in the morning. Where once it was "Thank-you God for another beautiful day and another chance at life", it's now become "Oh God, I'm still alive, now what?"
My lifeline has been the computer and quite frankly, facebook. Just being able to keep in touch with others and to see them living their lives makes my whole day. I play Farmville and FarmTown and they help me with pain management. I'm able to research and be able to make informed medical decisions on my own, which has come in handy since I no longer have doctors to help me do that. My days aren't all doom and gloom, I do smile. I try, I really do try, to find the good side of things and hang on to those. I don't know how much longer I have on this round sphere we call earth or what my purpose is, but for whatever reason, I guess God isn't ready for me yet. It's hard to have to live in a bubble of sorts. What is a simple cold to someone can literally kill me if I catch it. I've had two PF friends who that exact thing happened to within the last month and I've heard story after story of others who have lost loved ones that quickly to this disease. It's like living as a ticking time bomb. You can be toodling around seemingly fine one day and gone the next. It's hard to live with that on your shoulders. It's hard knowing on the days that I'm struggling to breathe even with the oxygen that the day will come when I will no longer recover. It's hard not to panic and something I'm really working hard on. It's hard to know that at any point, because I also have pulmonary hypertension, that my heart can just blow out. There is a fine line between getting the exercise you need and overdoing it. Getting it wrong can literally be a killer. That's a lot of pressure - literally and physically.
I admit that I am overwhelmed. I'm a fighter and have been all my life but the fight is slowly fading out of me. Between the physical assault on my body and mind and the financial stresses and the concern about what the future (if I have any future left) holds. We've come to the conclusion that it may be time to leave Adamsville. Truth be told, the idea of living closer to my grandson and the beach is sounding better and better each day. It won't be easy. First we have to try and get out of this house. Our credit is ruined from the medical bills that have piled up and we haven't been able to pay plus the fact that our credit cards are now maxed out - from everyday living expenses. And we have no idea how we'd pay to get our stuff down there or whether we'll even be able to rent a place. So many unknowns. I'll hate to leave here because I have loved it so but I don't feel I belong here anymore. Friendships have waned and been stressed because it's hard on them when you have to live with these circumstances. I can't blame them for not coming around - it's hard to watch me struggle for things everybody takes for granted. It's hard for Oliver to watch and except for the times he takes Charlie for a walk, he has to. It's hard on my son, Dan, who doesn't even call because quite frankly, he doesn't know what to say. It hurts that he doesn't call, but I do understand. I can no longer hide the dark sides of this disease. I can't hide the pain as I grimace from movement and I certainly can't hide the times that I have to hook up to the oxygen, which has become more and more frequent. I even have to sleep with it now. We do still have our small group from church and they are wonderful. They bring a smile to my face and make me feel just a little bit human for a couple of hours every couple of weeks. We love them.
The good thing about being let go from Vanderbilt is that I no longer have to worry about living within 3 hours of Nashville. Since being automatically disqualified for a lung transplant due to no insurance, that option is off the table and that was the only option I had of beating this thing called Pulmonary Fibrosis. But that leaves us free to literally move wherever we want to, well, at least in our heads. There are days when I'd love to be down by the beach near my grandson and then there are other days when I'd just like to get a motorhome and go check things off my bucket list. Away from the collection agency calls, away from all those things that keep you tied to terra firma. As long as we would be able to have a satellite hookup for tv and internet, we'd be set. I might even be able to assist in keeping a motorhome clean - much less overwhelming than the house. There are days when I dream of something as simple as owning a Motorola XOOM e-tablet. Since I like to read it would be neat to have a tablet to be able to do that with. It would be nice to be able to curl up in my chair and do all the things on the internet that I do. The laptop is just too heavy for me and awkward to do that with. I'd love to go on a cruise. I'd be happy living on a houseboat but I'm not sure Oliver could stomach it. I'd love to visit Hawaii but since flying can severely compromise my lungs, that option is definitely out. I know I wouldn't be able to just swim from Los Angeles to Honolulu - and back. Then I realize that these are ALL dreams that may never come true. Right now, in reality, I can only dream that the electric, water, food and meds are paid for today.
I mourn not being able to do all the things that I always thought I'd have later to do. I worked hard, sometimes too hard, and set aside my dreams and aspirations to be with my family. I always thought that I'd be able to travel when we retired and to have a nice house and be able to get a new car every 5 or 6 years or so. I'll never experience that new car smell again - well, unless I just go sit in one at the dealership. Quite frankly, I may not be able to do that since all kinds of smells now literally take my breath away. I hate the stares I get from people on those rare occasions when I do venture out. Most people are merciless, thinking I did something to myself that caused me to be sick - like it was my choice to be this way. I didn't. I hate that kids now feel they have to hide behind their parents because they are afraid of the oxygen tanks and tubing, which make me sound like Darth Vader. That breaks my heart because I have always loved kids and had a special connection with them. Where once I saw smiles, now I only see fear.
I'm not looking to invite anyone to my pity party. I don't even stay here long myself, if I can help it. Quite frankly, I don't even know what more I want out of life. I guess my biggest thing would be to have some kind of security. I'd like to put all my concentration into fighting this disease and into believing that perhaps, just perhaps, the doctors got it all wrong and I have something else - something curable. I'd like to beat the odds that are stacked up against me. That is my daily prayer. That somehow, some way, SOMETHING will just turn out ok. That at least one area in my so called life would just settle down and not be stirred. I'd like some calmer waters, please. In the meantime, I'll look out the dirty window at the sunshine and the trees and grass greening up and remember that there are seasons in everybody's life and that even winter can only hang on so long. Perhaps the rope unraveling is a good thing after all. Maybe, just maybe, it will be the opportunity to change the grip that will make all the difference. I sure hope and pray so.
Saturday, April 2, 2011
A Tennessee Spring Afternoon
Ok, the afternoon started out innocently enough. I really was just heading outside to sit on my lounge chair and immerse myself in a book I've been wanting to finish. It's not the worst book I've ever read but certainly not a page turner by any means. I'm only 50 pages from getting it done and I thought the warm sunshine along with the crisp breeze of a sunny spring day would entice me to finish it. I did start reading. I actually got about 4 pages read before I couldn't help myself, I began looking around.
There is something about early spring clean-up that just begs for you to attack it on a glorious day. I admit that I no longer have the strength, stamina or even the very breath to do what I used to but I couldn't just sit there and do "nothing" like I planned. So, despite knowing better when I've sick all week, I decided at least I could "tame the jungle" (aka mowing the lawn) for the first time this year. There is something about the smell of freshly mowed onions that just screams spring. Yep, you read correct - freshly mowed onions, not grass. At least now I'm no longer surprised when this happens nor think I've lost my mind.
We have about an acre and a quarter of land that is ours, but half of it is wooded. All in all it takes about an hour to mow and quite frankly, it's a "chore" I really enjoy. There is something about the drone of the tractor engine, the smell of the aforementioned onions, the fresh air, the sound of crickets, the mounds of ant hills emerging from the ground, the toads hopping for their lives as the tractor approaches, that just makes you glad to be alive. I must say I have mastered this task. No longer breaking windows or running over things that can tangled in the blades. Since it rained a good deal this week, I didn't need to worry about closing the windows before churning up the dust and dirt. No flat tires on the tractor. No belts coming loose because I took a turn a bit too tight. No bruised knees from holding on to the tractortoo tightly wtih my legs for fear of falling off. I have improved. I got it done in record time and went back to my lounge chair and book.
As I sat there with the goal of really finisihing the book this time, I began to once again look around. I knew better than to look at the weeds poking up from the front landscaping - they can wait. I looked up to the sky to see a hawk fly overhead and smiled as I watched it soar and dive. I heard the distinct sound of the mockingbirds that have shared our property for the past couple of years. I heard a dog bark in the distance and heard the crack of gun go off as some hunter tried to shoot his prey. My nose met with the smell of burning of leaves and wood from others who were clearing their properties of the fallen branches and stuff that the winter leaves behind.
Ok, enough of that... I have to finish this book. I started once more to at least finish the chapter, if not the rest of the book, when movement caught my attention from the left. I looked over expecting to see Duke, our neighborhood Great Dane, but instead my eyes beheld the vision of a half dozen deer come scampering across our yard towards the wooded area across the street. Not an unusual sight by any means, we have deer come by all the time, but not usually when we're out there and certainly not less than 15 yards away. They were absolutely beautiful with their graceful strength. I couldn't help but grin from ear to ear as I saw the last of their little white tails disappear into the woods. I wished I'd have had my camera at the ready but I knew that even if I had it out there with me, I would have missed the whole moment because it was over in an instant.
I put the book down. It wasn't going to get read anymore this afternoon. Instead I just sat there and just really absorbed all that was going on around me. I embraced every sensory experience that I could and I let every muscle in my achy body just relax. And I thanked God for another day, for another breath, for another chance to experience a lovely spring day. We've lived a lot of places over the years and I've met many a spring but I have to say there is something incredibly peaceful and powerful about Tennessee in the springtime. It's not just the promise of things to come or the freshness of new beginnings, it's something more. Something almost intangiable and yet right there. Hard to explain but wonderful to experience.
I'm glad the Bradford Pear trees are giving up the last of their white spring flowers because that means the stinky fish smell that accompanies them will wane as well. It's awesome to see the bright colors of the buttercups and tulips and various other flowers as they poke through the ground in all their glory. I love watching the naked branches begin to bud with their little green nubs of future leaves to remind us of the circle of life. I'm glad it's spring and I look forward to many more beautiful days finally finsihing that book - someday.
There is something about early spring clean-up that just begs for you to attack it on a glorious day. I admit that I no longer have the strength, stamina or even the very breath to do what I used to but I couldn't just sit there and do "nothing" like I planned. So, despite knowing better when I've sick all week, I decided at least I could "tame the jungle" (aka mowing the lawn) for the first time this year. There is something about the smell of freshly mowed onions that just screams spring. Yep, you read correct - freshly mowed onions, not grass. At least now I'm no longer surprised when this happens nor think I've lost my mind.
We have about an acre and a quarter of land that is ours, but half of it is wooded. All in all it takes about an hour to mow and quite frankly, it's a "chore" I really enjoy. There is something about the drone of the tractor engine, the smell of the aforementioned onions, the fresh air, the sound of crickets, the mounds of ant hills emerging from the ground, the toads hopping for their lives as the tractor approaches, that just makes you glad to be alive. I must say I have mastered this task. No longer breaking windows or running over things that can tangled in the blades. Since it rained a good deal this week, I didn't need to worry about closing the windows before churning up the dust and dirt. No flat tires on the tractor. No belts coming loose because I took a turn a bit too tight. No bruised knees from holding on to the tractortoo tightly wtih my legs for fear of falling off. I have improved. I got it done in record time and went back to my lounge chair and book.
As I sat there with the goal of really finisihing the book this time, I began to once again look around. I knew better than to look at the weeds poking up from the front landscaping - they can wait. I looked up to the sky to see a hawk fly overhead and smiled as I watched it soar and dive. I heard the distinct sound of the mockingbirds that have shared our property for the past couple of years. I heard a dog bark in the distance and heard the crack of gun go off as some hunter tried to shoot his prey. My nose met with the smell of burning of leaves and wood from others who were clearing their properties of the fallen branches and stuff that the winter leaves behind.
Ok, enough of that... I have to finish this book. I started once more to at least finish the chapter, if not the rest of the book, when movement caught my attention from the left. I looked over expecting to see Duke, our neighborhood Great Dane, but instead my eyes beheld the vision of a half dozen deer come scampering across our yard towards the wooded area across the street. Not an unusual sight by any means, we have deer come by all the time, but not usually when we're out there and certainly not less than 15 yards away. They were absolutely beautiful with their graceful strength. I couldn't help but grin from ear to ear as I saw the last of their little white tails disappear into the woods. I wished I'd have had my camera at the ready but I knew that even if I had it out there with me, I would have missed the whole moment because it was over in an instant.
I put the book down. It wasn't going to get read anymore this afternoon. Instead I just sat there and just really absorbed all that was going on around me. I embraced every sensory experience that I could and I let every muscle in my achy body just relax. And I thanked God for another day, for another breath, for another chance to experience a lovely spring day. We've lived a lot of places over the years and I've met many a spring but I have to say there is something incredibly peaceful and powerful about Tennessee in the springtime. It's not just the promise of things to come or the freshness of new beginnings, it's something more. Something almost intangiable and yet right there. Hard to explain but wonderful to experience.
I'm glad the Bradford Pear trees are giving up the last of their white spring flowers because that means the stinky fish smell that accompanies them will wane as well. It's awesome to see the bright colors of the buttercups and tulips and various other flowers as they poke through the ground in all their glory. I love watching the naked branches begin to bud with their little green nubs of future leaves to remind us of the circle of life. I'm glad it's spring and I look forward to many more beautiful days finally finsihing that book - someday.
Wednesday, March 9, 2011
A Cold January Afternoon
It was eerily quiet in the house as I came home that cold January afternoon from school. Even though there were four of us living in the house at the time, it really wasn't all that strange to have the house to myself at that time. My mom was usually at work and up until a month earlier, my stepdad would be also. Ken, my brother, occassionally would have to stay after school for one reason or another and it was one of those days.
I wasn't too concerned at first about the chill I felt because after all, it was a cold day in January in Chicago. Chilly feelings were to be expected. But something just didn't seem right. Perhaps it was because I was getting used to my stepfather being there, usually drinking himself into a stupor. I was never afraid of him. Actually it was quite the opposite. For some reason I terrified him. He never stepped out of line while I was around. It would be the stories that I would hear about later that would really surprise me. Oh he would get mouthy, but mouthy I can handle. He had long ago stopped trying to raise a hand to me. He usually just quieted down when I came home and then left everyone alone as he went on to nurse his drinks. I never even really noticed that it was happening that way. I was a young teen after all and the total of my existence revolved around school and my friends. Family was inconsequential.
I sat down to do my homework and as I was pondering the adverbs and verbs in Spanish, the phone rang. It was my mom and she sounded a bit concerned. Without saying too much she asked me to go upstairs and see if my stepdads clothes were in the closet. They were. I looked around their room and nothing seemed out of place. She asked if he was home and I said no. I didn't see him anywhere. She figured that maybe he had just gone out since they had quarreled on the phone a few hours earlier. She seemed satisfied and told me she'd see me when she got home.
Within the hour, Ken came home. My mom only worked five minutes from home, so she would call and say she was on her way. It was part of Ken's chores to go and make sure the garage door was open for her to pull into. We had a detached, two-car garage and it was probably 50 feet or so behind the house. One of my chores was to make sure that any lingering dishes were washed and the kitchen clean so that dinner could be made.
I remember standing at the sink and looking up and seeing my brother trying to run through the snow towards the house after opening the garage door. He kept tripping and stumbling but would get up again. He didn't say a word as he brushed by me and headed for his room. I looked through the kitchen window and saw my stepfathers car in the garage and figured he had just come home. A minute later, mom pulled in. I just thought he knew she was coming home and was waiting to walk with her into the house so that she didn't have to tackle walking in the snow herself. He would have never thought to shovel the driveway. He wasn't into any physical labor. That was usually my job and one I really didn't mind. Something about the cold, crisp air biting at my nostrils and the mindless act of moving the snow made me feel alive and allowed me time to think. It was just too miserably cold that day to be out there. It could wait until tomorrow.
I finished putting the dishes away and looked out to see my mom running through the snow much like my brother did. What in the world? As she came in and brushed past me to go pick up the phone, I looked out the window once more. Both cars were there but I didn't see my stepdad coming in towards the house. As I turned to look at my mom, I saw the ashen look in her face just as she was telling the emergency operator that she had just found her husband in the garage and she thought he was dead.
They had been married just shy of 4 years when he unexpectedly took his own life. We knew he had demons that he was fighting, his drinking attested to that, but none of us expected this. I guess part of himself felt bad because he had lost his job and had been unable to find another and part of himself just couldn't battle those demons one more day. In an instant, we went from what seemed like a happy, close family, to a family with the unmentionable fact that a suicide had been committed. I don't care how many people say they don't judge, when it comes to suicide, the family is always suspect at causing it or at the very least, guilty for not stopping it.
I remember the whispers and the hushed people as we would go into stores. The blank stares and some people were rude enough to ask if we had actually done him in. I was fourteen years old when I was thrown into the world of injustice that surrounds those who have a loved one who commits suicide. You have the thoughts yourself that maybe you could have done more, that maybe you could have changed the outcome, that just maybe... the list goes on. But it's a whole other ballgame when those thoughts are voiced by friends and strangers alike, from those who don't even have a clue.
So here we were in our grief and disbelief and really not getting much help from our little world. It really was no wonder that my mother retreated further into her own mind and liquor after that. She died herself, of natural causes, only three years later.
Suicide is a disease all in itself and it effects not only the life of the person who commits it, but the lives of those all around that person. I certainly have battled my own demons through the years so I can understand where the thoughts can come from. But I also remember the pain and the stigma that befell those of us innocent to any of it.
This is a rough time in history. Not only because it is usually a tough time for people after the holidays but especially in these tough economic times. Suicides will be up this year and that really is a tragedy on so many levels. Few of us will go through life without suicide effecting us personally or someone we know. I would like you to do me a favor. Please take a few moments to pray for those who are so locked within their minds that they have no hope and see no way out of their personal circumstances. Please pray for the families and friends of those whose lives will be touched by someone who will commit this incomprehesible act. Please pray that somehow, someway, God's love comes through to those who are so low that they don't even know which way to look to find a glimmer of hope. Please pray. Thank-you.
I wasn't too concerned at first about the chill I felt because after all, it was a cold day in January in Chicago. Chilly feelings were to be expected. But something just didn't seem right. Perhaps it was because I was getting used to my stepfather being there, usually drinking himself into a stupor. I was never afraid of him. Actually it was quite the opposite. For some reason I terrified him. He never stepped out of line while I was around. It would be the stories that I would hear about later that would really surprise me. Oh he would get mouthy, but mouthy I can handle. He had long ago stopped trying to raise a hand to me. He usually just quieted down when I came home and then left everyone alone as he went on to nurse his drinks. I never even really noticed that it was happening that way. I was a young teen after all and the total of my existence revolved around school and my friends. Family was inconsequential.
I sat down to do my homework and as I was pondering the adverbs and verbs in Spanish, the phone rang. It was my mom and she sounded a bit concerned. Without saying too much she asked me to go upstairs and see if my stepdads clothes were in the closet. They were. I looked around their room and nothing seemed out of place. She asked if he was home and I said no. I didn't see him anywhere. She figured that maybe he had just gone out since they had quarreled on the phone a few hours earlier. She seemed satisfied and told me she'd see me when she got home.
Within the hour, Ken came home. My mom only worked five minutes from home, so she would call and say she was on her way. It was part of Ken's chores to go and make sure the garage door was open for her to pull into. We had a detached, two-car garage and it was probably 50 feet or so behind the house. One of my chores was to make sure that any lingering dishes were washed and the kitchen clean so that dinner could be made.
I remember standing at the sink and looking up and seeing my brother trying to run through the snow towards the house after opening the garage door. He kept tripping and stumbling but would get up again. He didn't say a word as he brushed by me and headed for his room. I looked through the kitchen window and saw my stepfathers car in the garage and figured he had just come home. A minute later, mom pulled in. I just thought he knew she was coming home and was waiting to walk with her into the house so that she didn't have to tackle walking in the snow herself. He would have never thought to shovel the driveway. He wasn't into any physical labor. That was usually my job and one I really didn't mind. Something about the cold, crisp air biting at my nostrils and the mindless act of moving the snow made me feel alive and allowed me time to think. It was just too miserably cold that day to be out there. It could wait until tomorrow.
I finished putting the dishes away and looked out to see my mom running through the snow much like my brother did. What in the world? As she came in and brushed past me to go pick up the phone, I looked out the window once more. Both cars were there but I didn't see my stepdad coming in towards the house. As I turned to look at my mom, I saw the ashen look in her face just as she was telling the emergency operator that she had just found her husband in the garage and she thought he was dead.
They had been married just shy of 4 years when he unexpectedly took his own life. We knew he had demons that he was fighting, his drinking attested to that, but none of us expected this. I guess part of himself felt bad because he had lost his job and had been unable to find another and part of himself just couldn't battle those demons one more day. In an instant, we went from what seemed like a happy, close family, to a family with the unmentionable fact that a suicide had been committed. I don't care how many people say they don't judge, when it comes to suicide, the family is always suspect at causing it or at the very least, guilty for not stopping it.
I remember the whispers and the hushed people as we would go into stores. The blank stares and some people were rude enough to ask if we had actually done him in. I was fourteen years old when I was thrown into the world of injustice that surrounds those who have a loved one who commits suicide. You have the thoughts yourself that maybe you could have done more, that maybe you could have changed the outcome, that just maybe... the list goes on. But it's a whole other ballgame when those thoughts are voiced by friends and strangers alike, from those who don't even have a clue.
So here we were in our grief and disbelief and really not getting much help from our little world. It really was no wonder that my mother retreated further into her own mind and liquor after that. She died herself, of natural causes, only three years later.
Suicide is a disease all in itself and it effects not only the life of the person who commits it, but the lives of those all around that person. I certainly have battled my own demons through the years so I can understand where the thoughts can come from. But I also remember the pain and the stigma that befell those of us innocent to any of it.
This is a rough time in history. Not only because it is usually a tough time for people after the holidays but especially in these tough economic times. Suicides will be up this year and that really is a tragedy on so many levels. Few of us will go through life without suicide effecting us personally or someone we know. I would like you to do me a favor. Please take a few moments to pray for those who are so locked within their minds that they have no hope and see no way out of their personal circumstances. Please pray for the families and friends of those whose lives will be touched by someone who will commit this incomprehesible act. Please pray that somehow, someway, God's love comes through to those who are so low that they don't even know which way to look to find a glimmer of hope. Please pray. Thank-you.
Saturday, January 15, 2011
A Mid-Winter's Day Bath
Funny thing about livinng with Pulmonary Fibrosis is that life's schedules as you have known them to be all your life become non-existent. Due to the fluctuations of the disease, you learn to roll with the flow. Sometimes there are sleepless nights and sleep-filled days. Taking a shower, bathing or getting dressed have to be aligned with the time of day when your strength reserves are at their highest or you can spend the rest of the day trying to catch your breath. That being said, it's how I came about taking a very relaxing bath in our whirlpool tub today - in the middle of the day. Ah, pure bliss. No pain, easy, steady breaths, as close to heaven as one can get on earth... that is until....
Me, in my infinite wisdom, was just floating along, relaxing and daydreaming of warmer climates and something about cabana boys bringing me drinks with little umbrellas and fruit in them. To add to the ambience, I decided to use my Black Raspbery Vanilla shower gel to wash up with. I was mindful of the fact that this was soap so I squeezed merely a dimeful unto the washcloth and inhaled the fragrance deeply. It's not a strong scent, for that would send me into a coughing frenzy, but merely a light scent that I use in the shower every day. You know, it doesn't take much soap in a whirlpool tub to explode into a plethora of sweet smelling bubbles that quickly cascaded over the side of the tub and on to the floor. Oh well, that would have to wait, the story in the magazine about Hawaii beckoned. So I leaned back in the tub and continued my daydream of a warm beach somewhere, all the while reading an article on the benefits of visiting Hawaii and some special places on the Big Island to be sure to visit.
Suddenly, somewhere in the depths of the deep blue whirlpool sea, something brushed up against my leg and let's just say, I may be able to cancel my complete cardiac work-up the end of the month at Vanderbilt. The jolt my heart took is telling me it's working just fine. After nearly bolting from the tub (alas I didn't because even a non-slip surface at the bottom of said tub was no guarantee of safety if you move suddenly and too fast), I quickly realized that sharks are not indigenous to this part of the state of Tennessee. As a matter of fact, I've never seen one loose in the state at all and I certainly didn't see one walk past me and jump in the tub with me. After a quick, blind, swish of my hand in the water I came upon the culprit that drew such fear - the washcloth. Somehow it had covertly slipped off the side of the tub under the covering of bubbles where it was caught in the tide of the whirlpool and began it's wild ride of pleasure in the nice warm water - plotting it's plan of attack.
After so rudely being snapped back to reality, I decided it was time to exit my little vacation place and return to the cold, bleary day at hand. It didn't take long to clean up the bubbles that made their way across the floor. I suppose there are more efficient ways to clean the outside of the tub and the surrounding floor, but I have to admit that both myself and the bathroom smelled so divine. Ah, yes, it was short, but sweet. A mini-vacation in the midst of an insidious disease that literally steals my breath away - and not in a good way. I may not have control over this disease, as it so clearly reminds me on a day to day basis, but I can honestly say that this disease does not have complete control over me. As long as I can manage to find little snippets of time where I can escape into the recesses of my mind and manage to find hope as well as something to smile about, then it never will. And that I can take to the bank.
Hope y'all are having a great weekend. Time now to settle in with a pain pill, my other meds and the rest of the day filled with football games. Yep, today I've won against Pulmonary Fibrosis - no matter what my O2 stats are. Have a blessed day and remember - tomorrow - GO BEARS! : )
Me, in my infinite wisdom, was just floating along, relaxing and daydreaming of warmer climates and something about cabana boys bringing me drinks with little umbrellas and fruit in them. To add to the ambience, I decided to use my Black Raspbery Vanilla shower gel to wash up with. I was mindful of the fact that this was soap so I squeezed merely a dimeful unto the washcloth and inhaled the fragrance deeply. It's not a strong scent, for that would send me into a coughing frenzy, but merely a light scent that I use in the shower every day. You know, it doesn't take much soap in a whirlpool tub to explode into a plethora of sweet smelling bubbles that quickly cascaded over the side of the tub and on to the floor. Oh well, that would have to wait, the story in the magazine about Hawaii beckoned. So I leaned back in the tub and continued my daydream of a warm beach somewhere, all the while reading an article on the benefits of visiting Hawaii and some special places on the Big Island to be sure to visit.
Suddenly, somewhere in the depths of the deep blue whirlpool sea, something brushed up against my leg and let's just say, I may be able to cancel my complete cardiac work-up the end of the month at Vanderbilt. The jolt my heart took is telling me it's working just fine. After nearly bolting from the tub (alas I didn't because even a non-slip surface at the bottom of said tub was no guarantee of safety if you move suddenly and too fast), I quickly realized that sharks are not indigenous to this part of the state of Tennessee. As a matter of fact, I've never seen one loose in the state at all and I certainly didn't see one walk past me and jump in the tub with me. After a quick, blind, swish of my hand in the water I came upon the culprit that drew such fear - the washcloth. Somehow it had covertly slipped off the side of the tub under the covering of bubbles where it was caught in the tide of the whirlpool and began it's wild ride of pleasure in the nice warm water - plotting it's plan of attack.
After so rudely being snapped back to reality, I decided it was time to exit my little vacation place and return to the cold, bleary day at hand. It didn't take long to clean up the bubbles that made their way across the floor. I suppose there are more efficient ways to clean the outside of the tub and the surrounding floor, but I have to admit that both myself and the bathroom smelled so divine. Ah, yes, it was short, but sweet. A mini-vacation in the midst of an insidious disease that literally steals my breath away - and not in a good way. I may not have control over this disease, as it so clearly reminds me on a day to day basis, but I can honestly say that this disease does not have complete control over me. As long as I can manage to find little snippets of time where I can escape into the recesses of my mind and manage to find hope as well as something to smile about, then it never will. And that I can take to the bank.
Hope y'all are having a great weekend. Time now to settle in with a pain pill, my other meds and the rest of the day filled with football games. Yep, today I've won against Pulmonary Fibrosis - no matter what my O2 stats are. Have a blessed day and remember - tomorrow - GO BEARS! : )
Tuesday, December 28, 2010
Here Coach...
Funny thing happened after we woke up today. We ended up with a new coach for team Hassett. Sigh. It all started last night when we were reminiscing with a friend of ours that was over for Monday Night Football about our old dog Bart. Then of course, the conversation bended towards Igloo. We laughed as we recalled good times with them both. It was the first time that I was able to do that without the tears welling up in my eyes. Up until now, it just hurt too much even though it has been year and a half since Igloo died.
After our friend left, we continued to talk bout how it would be nice to have a dog again someday and what kind, color and size, etc., then we went to bed. This morning I decided to clean out some folders off of my computer and came across the little movie I made after Igloo died. As I was watching it and tears were streaming down my face, I felt like he was telling me that it was ok if we moved on. It was almost as if he was releasing my heart to love a pup again. I didn't say anything to Oliver about it and just went and got on facebook, like I do every day (yeah, yeah, I know). Lo and behold there was a post from one of my friends who was looking to give away a 15 month old dog because she just felt they didn't have the time for him like he needed.
Well, I guess I don't need to tell you what happened next. Tonight she brought him by to meet us and that's all she wrote. We both fell head over heels for this little bundle of fur. He came with the name of Lucky but it just didn't seem to fit him - at least to us - and he wasn't really responding to it anyway. We tossed names around (I kinda liked Ditka but y'all know that any reference to a Chicago Bears team was not going to fly with Oliver) and finally we both agreed on Coach. We figured he'll probably be calling the shots around here anyway. He is adorable - white with tan spots, the exact coloring and size that we had talked about last night. Some kind of Spaniel mix and very mild mannered. He's quickly making himself at home and quite frankly, it feels like he's been part of the family all along.
He's pretty quiet. We did find out that he has a voice when he found himself in the mirror of the curio cabinet... lol. Guess he thought he had a playmate for a minute. Oliver went out to the shed and found an old collar and leash that I had, for whatever reason, kept in my memory box. He is now adorned in Husker red with a red leash and he's looking quite dapper if I do say so myself. I still want to give him a bath tomorrow and clean him up a bit before taking pictures but I will post them soon. He has already taken dad for a walk and he said that dad did just fine on his end of the leash (and no, I am not a dog whisperer, it's just his eyes speak volumes). Needless to say, we're dog parents again and it just feels right. If you would have asked me two days ago about getting a dog, I'd have still said "no way". But God had other ideas and we're just thinking that He knew all along that we all would need each other. Funny how He works that way. Ok, Coach, what are we gonna do next?
Post note: Coach didn't stick... as it turns out, everytime he went to get into something, I would say, "oh no, sorry Charlie" and guess what? Yep he started responding to Charlie... so Charlie it is and quite frankly - it fits. : ) <3
After our friend left, we continued to talk bout how it would be nice to have a dog again someday and what kind, color and size, etc., then we went to bed. This morning I decided to clean out some folders off of my computer and came across the little movie I made after Igloo died. As I was watching it and tears were streaming down my face, I felt like he was telling me that it was ok if we moved on. It was almost as if he was releasing my heart to love a pup again. I didn't say anything to Oliver about it and just went and got on facebook, like I do every day (yeah, yeah, I know). Lo and behold there was a post from one of my friends who was looking to give away a 15 month old dog because she just felt they didn't have the time for him like he needed.
Well, I guess I don't need to tell you what happened next. Tonight she brought him by to meet us and that's all she wrote. We both fell head over heels for this little bundle of fur. He came with the name of Lucky but it just didn't seem to fit him - at least to us - and he wasn't really responding to it anyway. We tossed names around (I kinda liked Ditka but y'all know that any reference to a Chicago Bears team was not going to fly with Oliver) and finally we both agreed on Coach. We figured he'll probably be calling the shots around here anyway. He is adorable - white with tan spots, the exact coloring and size that we had talked about last night. Some kind of Spaniel mix and very mild mannered. He's quickly making himself at home and quite frankly, it feels like he's been part of the family all along.
He's pretty quiet. We did find out that he has a voice when he found himself in the mirror of the curio cabinet... lol. Guess he thought he had a playmate for a minute. Oliver went out to the shed and found an old collar and leash that I had, for whatever reason, kept in my memory box. He is now adorned in Husker red with a red leash and he's looking quite dapper if I do say so myself. I still want to give him a bath tomorrow and clean him up a bit before taking pictures but I will post them soon. He has already taken dad for a walk and he said that dad did just fine on his end of the leash (and no, I am not a dog whisperer, it's just his eyes speak volumes). Needless to say, we're dog parents again and it just feels right. If you would have asked me two days ago about getting a dog, I'd have still said "no way". But God had other ideas and we're just thinking that He knew all along that we all would need each other. Funny how He works that way. Ok, Coach, what are we gonna do next?
Post note: Coach didn't stick... as it turns out, everytime he went to get into something, I would say, "oh no, sorry Charlie" and guess what? Yep he started responding to Charlie... so Charlie it is and quite frankly - it fits. : ) <3
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