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.