I was once told that I have a very tenacious spirit. I laughed it off at the time and thought it was just a unique way of saying that I was stubborn. As the years have gone by, those words have stuck in my head and I haven't been able to quite let them go. So, like any good student of life would do, I explored the actual meaning of the word - tenacious. Webster defines it as "tending to hold fast; not easily pulled apart; tending to adhere or cling; persistent in maintaining, adhering to or seeking something valued or desired." Hmmm. Guess that person had a point. The more those words have steeped in my brain, the more real and accurate they seem.
I am generally a private person. Oh, I'm outgoing and will talk to anybody about just about anything and occasionally use things that have happened in my life to prove a point, but for the most part, very few people indeed know what makes me who I am. Very few know of the struggles and obstacles I have faced in my life. As I sit here with seemingly the weight of the world on my shoulders and my entire life in an upheaval, God has placed it on my heart to share some of what I've been through. So, for a private person who hates to journal, this will not be an easy task. Funny thing about knowing that your time to meet your maker is drawing ever closer - you certainly don't want to NOT do what He's asking you to do. Nope, I don't want to stand before the judgement seat and find out that God had wanted to use something that I had been through to help someone else and that because of my pride, insecurities and/or fear, I didn't listen and obey. I'll be blogging as God puts things on my heart to share - in no particular order. You're welcome to come along for the ride. A lot of the things I'll be sharing I have never spoken of before. I may be changing names to keep people I love - and even those who I may not deem as my favorite peeps - from getting hurt. My point is not to cause pain to anyone, I just need to share the experience - names and specifics are truly irrelevant. The rest is in God's hands on how He wants it to touch people. Some things will be hard to read and even harder to write, but hang in there with me. In each and every instance, I have seen God's light beckoning me forward and carrying me through.
Getting back to the tenacious spirit. I have had to fight an uncooperative body my whole life. Many times through the years I have come close to not pulling through with the doctors having no idea why. Too many times to even share in one blog. I have caused many a doctor sleepless nights I'm sure. But I was born a fighter. I recall my mom sharing that I gave her quite the scare in the delivery room. As they slapped my bottom, I didn't make a peep. They cleared my airways and tried again - still no sound. Ok, you can quit smiilng now, I know I've made up for that in spades, but to a delivering mother who didn't even have time to get any meds or an epidural before delivery, that lack of sound was frightening. The doctors scrambled to see what, if anything, was wrong but they just couldn't figure it out. My breathing was labored at first but quickly I caught on and before long, all was well. The doctor told my mom that I was fighter and somewhere deep down inside, those words must have taken root.
I spent my toddler years with tonsillitis, ear infections, sinus infections and myriad colds and allergies. My biggest budget buster for school supplies was never the paper or pencils, but the boxes of Kleenex. Most kids came with a box to share the first day of school to share for the year and I had to lug four or five boxes myself and still would have to bring more before the school year was done. I remember like it was yesterday when I had to finally have my tonsils removed. It was the same day my first grade class was going on a field trip. Instead of boarding a bus to go to Hawthorn Melody Farms to see real cows get milked, I was being whisked away in a car to Lutheran General Hospital for surgery. The tonsils came out fine but for some reason, I had trouble with the anesthesia and breathing. Instead of being able to go home in a day or so, I was stuck in the hospital for a week - still stewing because I had to miss the field trip, my FIRST field trip no less. They had trouble stopping the bleeding and getting my oxygen levels regulated. No explanation as to why and quite frankly, I guess I had the doctor a bit concerned because every time they thought they had me stabilized, something would go wrong. But he knew I was fighting and even he said no medicine was a match for that. My mom, up until the day she died, attributes my health scares to her consistently premature graying hair and always wondered if it was all because secretly I was thrilled with living on root beer popsicles.
I never was one to be able to even think about perfect attendance at school. Most years I was perilously close to being held back because of days missed. My only saving grace was that my grades were excellent and that I did work my butt off - for the most part. There were subjects that I wasn't thrilled with but on the ones that I was, there was no stopping me. I'd chomp on every piece of information that I could sink my teeth into. I'd sleep, eat and breathe it until I felt that I really knew the subject and not just enough to get a passing grade. Guess I was a bit tenacious in my research. I was a standard fixture at the library where I aced the dewey decimal system and could find a book faster than many a full time librarian. Today I have a world of information at my fingertips and only a mouse click away.
When my mother became ill and the doctors couldn't figure out what was wrong, I'd scour the limited medical resources we had at our local library to see if I could "help". In the meantime, I watched as my mom shuttled from doctor to doctor trying to find answers as to why her body was failing her and doctor after doctor thinking that it was all in her head. They'd admit that she didn't look well but no tests were coming up with definitive answers, and quite frankly, they didn't bother to even look beyond the obvious. It was hard for her and very frustrating and hard for me because I felt helpless. One of the hardest things I've ever faced in my life was watching someone I love die and not be able to do one thing about it. I watched not only her body diminish but her will and her spirit as well. I'll go into more of that at another time.
On a cold January afternoon, while I was at graduation practice, my mother slipped away from us. I came home to find her lifeless body on the couch on the very day I was graduating from high school. I called the ambulance and stood by waiting to hear the words that I knew were coming... "I'm sorry, but she's gone." Somewhere in that time frame, life stood still. I remember going through the motioins but somehow I was protected from feeling the pain. I graduated from high school that night and in one day my entire world changed. It didn't stop there and actually my tenacity served me well in the days to come. Again, that's something I'll be touching on at another time.
I'll be sharing about having to fight for rights, against family, against doctors, against illnesses and a host of other things. Yet through each and every struggle, I've seen God's blessings shine through. I've seen how the seemingly separate pieces of a puzzle that make no sense are fitting together to form the perfect picture of what has become my life. I have not been thrilled with many of the things I have been through, but as I sit here and glance back at each and every piece, I'm beginning to see how each was needed to fill in the tapestry of my life. I have some tattered threads and there are places yet to be filled, but I'm finally able to see some of the ways in which God has carried me through each and every circumstance and somehow in the midst of it all, I became stronger, and yes, even more tenacious. I am not a quitter. I admit that the news of late has not been good and the doctors are giving up on me, but you know what? They've given up on me before and I'm still here. I will continue to fight with every breathe I take until I breathe my last. And that, my friend, you can take to the Bank of Tenacity. More later....
Wednesday, August 18, 2010
Thursday, August 12, 2010
And so it goes...
Well, I had my follow-up appointment at Vanderbilt on Tuesday. Dr. Sheller really is a special doctor. He has a quiet way about him and is so willing to listen to and answer any questions I may have. That's rare these days. He looked at the CT scan cd that I brought with me and was not pleased at all. He's going to have his team of radiologists look at it and see what they say. Basically though, there really isn't much they can do but just monitor me and try to make me comfortable. There was no need to run any more tests because there isn't anything more that they can do for me anyway that isn't already being done. If I make it through this episode of pulmonary embolism and pneumonia, there probably will be another one come about that I don't. We're taking precautions against the pulmonary emboli with the blood thinners, but they are no guarantee - just up my chances of not getting one a bit. Other than that, we've done all that can be done. He's agreed to leave me off the Imuran for at least another couple of weeks. Since I'm not feeling a whole lot better, I'm willing to concede that my taking the Imuran and getting the pneumonia and PE just might have been coincidental. Either way, I'm glad to have a break from it.
So basically, they just sent me home and are hoping for the best. Kinda sad when that starts to sink in. It's not easy for the doctors to admit and certainly not what you want to hear but I appreciate his honesty and know that if there was more he could do - he'd do it. Not that he's giving up, new stuff comes up everyday and I am one of their favorite patients - which is funny in itself. The rest is out of their hands, which has been the truth all along. I'm in God's hands and quite frankly, there is no place I'd rather be. And yet, I am also human, with human feelings and emotions. The song that keeps playing in my head is Tim McGraw's "Live Like You Were Dying" and it has always touched my heart. This week though, there is a new thought that has come to mind that I find is much harder to swallow... die like you are living. Think about it. The easy part is to appreciate all the blessings in my life. The people, the relationships, God's awesome beauty and works all around me, the list goes on. What's hard is not to dwell on knowing that it will all come to an end. One day I'll just cease to exist in this world. Of course, I realize we all will, but it's hard not to let that take front and center. It's hard to go through the everyday motions of life without wondering "what's the point?" In a lot of ways, it's freeing. I no longer fret over it if I have a scoop of ice cream while I'm watching tv at night - what's it going to do, kill me? But in a lot of ways, the everyday routine of things seems pointless. Oh I brush my teeth and shower everyday - Lord knows I couldn't stand it if I didn't. But I no longer worry that the house isn't spotless or that a picture isn't hanging just right. I no longer fuss over the towels being folded a certain way in the closet - yeah, I was that anal. It just doesn't matter. What I do notice and appreciate is that the towels are clean and where I can reach them, no matter how they're folded. The dishes are done and put away - most of the time - and that's a good feeling, although it's frustrating that I can't be the one doing them all the time. I do what I can but the bulk of the responsibilities for everyday life have fallen on Oliver.
Yesterday coming home we had the most amazing journey. Instead of coming home the interstate, we decided to take the Natchez Trace Parkway. It's a scenic route with hills and trees and loaded with wildlife. There are historical markers and information every couple of miles. We even stopped at the burial ground of Meriwether Lewis from Lewis and Clark fame. We saw deer and turkeys, butterflies galore, birds flying everywhere. We stopped at one point for a bathroom break and a quick lunch and just were mesmerized by the intrinsic beauty of God's creation. We saw an eagle fly high above the fields, with cows and goats below grazing and fish jumping in the pond. We saw a farmer in the distance moving a hale bale to a feeder in the horse corral. We listened to the quiet rustle of leaves as the wind blew through the trees as the brewing storm was picking up steam. We sat there, each lost in their own throughs. Me, sorry I didn't bring my camera, yet knowing that some things just can't be caught through a lens. This was a God moment for me. Somewhere in the turbulance that has entered my life, I found a peace that just cannot be explained. For just a moment I felt like that eagle, facing towards the storm, head on, and allowing the winds of that storm to lift me higher than I could have gotten on my power alone. Soaring high above all the storms rolling in and gaining strength in doing so. I can't stop the storms but that doesn't mean I can't use their power to get me higher. That eagle didn't stop one drop from coming down but it didn't get wet. It flew above it all. I want to be able to do the same.
It's hard not to focus on the storm when you just don't feel well. I'm in pain and it's hard to breathe most times, sometimes harder than others. I'm taking the meds as directed and doing everything that I'm supposed to. That's the ironic thing about this illness called Idiopathic Pulmonary Fibrosis. You don't do anything to cause it and there isn't anything you can take to make it better. It is incurable. The only "cure" would be a lung transplant. With my insurance ending in December, my not having the cash on hand to be able to pay my way through it, already not being able to tolerate the heavy drugs I would need to take, my history now of pulmonary emobli four times, being diabetic, etc. - um, I'm just not a good candidate for one. So here I sit with the reality of the situation being that I may have only a few more weeks, perhaps a year, outside chance for two. Still I believe that my healing was bought and paid for at the cross. I truly believe in God's divine wisdom and that He can and will heal me in His time - no matter what form that healing may take. I don't need to grow new lungs and do cartwheels down the road to know that there is a God who loves me beyond compare, but I'm willing to do just that if His desire is for me to do so. I'm willing to share the testimony and the road that He has me on. The tragedy would not to allow Him to use me and my story to bolster someone else walking a similar path. I've read the stories of miracles and seen many myself. Enough to know that they are real and they are special. But I've also seen enough very faithful people lose their battles to know that not everyone wins on this earth. I believe that God is in control and I want His will to be done in my life - the good and the bad. As long as He is for me, I truly know that no one and no illness can stand against me and win.
I debated long and hard with myself on whether to open up and be honest with what I'm feeling to people. It's hard to be vulnerable and put yourself out there - raw and open. It would be easy to go around saying that I'm doing great - after all, I don't look THAT sick (although these past two weeks I haven't looked too hot). It's harder to be honest and to see the uneasiness of people because they just don't know what to say. I know their hearts when they tell me to get better soon.... kinda wish I could myself. Lord knows I'm fighting with all that I have and I will continue to do so until my very last breath. I'm not afraid of dying, I am concerned with getting up there and standing before God having missed doing something that I was supposed to do on this earth. So I will share my journey with those willinng to go down the road with me and continue to pray for the lost and for those who are going through all kinds of maladies in life. I will continue to do my part as best I can. I will continue to be - fearfully and wonderfully made - for as long as God allows me to be on this planet. I'm willing to answer any questiong anybody has, so if there is something you want to know, ask away. I'll be honest that my emotions are all over the board but I know that my faith is strong. It's been tested time and time again and I know without a doubt, that's a test I'm passing with flying colors. Still working on the fleshly things though.
I am reminded of a quote from the late, great, D. L. Moody. ""Someday you will read in the papers that Moody is dead. Don't you believe a word of it. At that moment I shall be more alive than I am now. I was born of the flesh in 1837, I was born of the spirit in 1855. That which is born of the flesh may die. That which is born of the Spirit shall live forever." Ok, my years would be filled in as 1956 and 1963, respectively, and the name will change to Hassett, but the sentiment is the same. In the meantime, I will be taking things one day at a time. Hoping and praying that this latest episode is just a minor setback in the scheme of things and that soon I will be up and running around with the rest of my clan. But for now, as I doze in my chair, I'm flying high above the clouds on the wings of an eagle, not totally oblivious to the storms heading my way and circling around me, but refusing to let them define who I am. I'm above those storms, safe and protected, soaring higher than I ever knew I could.
So basically, they just sent me home and are hoping for the best. Kinda sad when that starts to sink in. It's not easy for the doctors to admit and certainly not what you want to hear but I appreciate his honesty and know that if there was more he could do - he'd do it. Not that he's giving up, new stuff comes up everyday and I am one of their favorite patients - which is funny in itself. The rest is out of their hands, which has been the truth all along. I'm in God's hands and quite frankly, there is no place I'd rather be. And yet, I am also human, with human feelings and emotions. The song that keeps playing in my head is Tim McGraw's "Live Like You Were Dying" and it has always touched my heart. This week though, there is a new thought that has come to mind that I find is much harder to swallow... die like you are living. Think about it. The easy part is to appreciate all the blessings in my life. The people, the relationships, God's awesome beauty and works all around me, the list goes on. What's hard is not to dwell on knowing that it will all come to an end. One day I'll just cease to exist in this world. Of course, I realize we all will, but it's hard not to let that take front and center. It's hard to go through the everyday motions of life without wondering "what's the point?" In a lot of ways, it's freeing. I no longer fret over it if I have a scoop of ice cream while I'm watching tv at night - what's it going to do, kill me? But in a lot of ways, the everyday routine of things seems pointless. Oh I brush my teeth and shower everyday - Lord knows I couldn't stand it if I didn't. But I no longer worry that the house isn't spotless or that a picture isn't hanging just right. I no longer fuss over the towels being folded a certain way in the closet - yeah, I was that anal. It just doesn't matter. What I do notice and appreciate is that the towels are clean and where I can reach them, no matter how they're folded. The dishes are done and put away - most of the time - and that's a good feeling, although it's frustrating that I can't be the one doing them all the time. I do what I can but the bulk of the responsibilities for everyday life have fallen on Oliver.
Yesterday coming home we had the most amazing journey. Instead of coming home the interstate, we decided to take the Natchez Trace Parkway. It's a scenic route with hills and trees and loaded with wildlife. There are historical markers and information every couple of miles. We even stopped at the burial ground of Meriwether Lewis from Lewis and Clark fame. We saw deer and turkeys, butterflies galore, birds flying everywhere. We stopped at one point for a bathroom break and a quick lunch and just were mesmerized by the intrinsic beauty of God's creation. We saw an eagle fly high above the fields, with cows and goats below grazing and fish jumping in the pond. We saw a farmer in the distance moving a hale bale to a feeder in the horse corral. We listened to the quiet rustle of leaves as the wind blew through the trees as the brewing storm was picking up steam. We sat there, each lost in their own throughs. Me, sorry I didn't bring my camera, yet knowing that some things just can't be caught through a lens. This was a God moment for me. Somewhere in the turbulance that has entered my life, I found a peace that just cannot be explained. For just a moment I felt like that eagle, facing towards the storm, head on, and allowing the winds of that storm to lift me higher than I could have gotten on my power alone. Soaring high above all the storms rolling in and gaining strength in doing so. I can't stop the storms but that doesn't mean I can't use their power to get me higher. That eagle didn't stop one drop from coming down but it didn't get wet. It flew above it all. I want to be able to do the same.
It's hard not to focus on the storm when you just don't feel well. I'm in pain and it's hard to breathe most times, sometimes harder than others. I'm taking the meds as directed and doing everything that I'm supposed to. That's the ironic thing about this illness called Idiopathic Pulmonary Fibrosis. You don't do anything to cause it and there isn't anything you can take to make it better. It is incurable. The only "cure" would be a lung transplant. With my insurance ending in December, my not having the cash on hand to be able to pay my way through it, already not being able to tolerate the heavy drugs I would need to take, my history now of pulmonary emobli four times, being diabetic, etc. - um, I'm just not a good candidate for one. So here I sit with the reality of the situation being that I may have only a few more weeks, perhaps a year, outside chance for two. Still I believe that my healing was bought and paid for at the cross. I truly believe in God's divine wisdom and that He can and will heal me in His time - no matter what form that healing may take. I don't need to grow new lungs and do cartwheels down the road to know that there is a God who loves me beyond compare, but I'm willing to do just that if His desire is for me to do so. I'm willing to share the testimony and the road that He has me on. The tragedy would not to allow Him to use me and my story to bolster someone else walking a similar path. I've read the stories of miracles and seen many myself. Enough to know that they are real and they are special. But I've also seen enough very faithful people lose their battles to know that not everyone wins on this earth. I believe that God is in control and I want His will to be done in my life - the good and the bad. As long as He is for me, I truly know that no one and no illness can stand against me and win.
I debated long and hard with myself on whether to open up and be honest with what I'm feeling to people. It's hard to be vulnerable and put yourself out there - raw and open. It would be easy to go around saying that I'm doing great - after all, I don't look THAT sick (although these past two weeks I haven't looked too hot). It's harder to be honest and to see the uneasiness of people because they just don't know what to say. I know their hearts when they tell me to get better soon.... kinda wish I could myself. Lord knows I'm fighting with all that I have and I will continue to do so until my very last breath. I'm not afraid of dying, I am concerned with getting up there and standing before God having missed doing something that I was supposed to do on this earth. So I will share my journey with those willinng to go down the road with me and continue to pray for the lost and for those who are going through all kinds of maladies in life. I will continue to do my part as best I can. I will continue to be - fearfully and wonderfully made - for as long as God allows me to be on this planet. I'm willing to answer any questiong anybody has, so if there is something you want to know, ask away. I'll be honest that my emotions are all over the board but I know that my faith is strong. It's been tested time and time again and I know without a doubt, that's a test I'm passing with flying colors. Still working on the fleshly things though.
I am reminded of a quote from the late, great, D. L. Moody. ""Someday you will read in the papers that Moody is dead. Don't you believe a word of it. At that moment I shall be more alive than I am now. I was born of the flesh in 1837, I was born of the spirit in 1855. That which is born of the flesh may die. That which is born of the Spirit shall live forever." Ok, my years would be filled in as 1956 and 1963, respectively, and the name will change to Hassett, but the sentiment is the same. In the meantime, I will be taking things one day at a time. Hoping and praying that this latest episode is just a minor setback in the scheme of things and that soon I will be up and running around with the rest of my clan. But for now, as I doze in my chair, I'm flying high above the clouds on the wings of an eagle, not totally oblivious to the storms heading my way and circling around me, but refusing to let them define who I am. I'm above those storms, safe and protected, soaring higher than I ever knew I could.
Thursday, August 5, 2010
As most of you know, I have been battling with health issues for a long, long time. Most of you have no idea what all is going on but have been keeping me in prayer anyway and I appreciate it so much. I've always been meaning to explain exactly what's going on and after the scare this weekend, realize there's no time like the present. If you don't want the graphic details, you can stop here with the diagnosis of Idiopathic Pulmonary Fibrosis. If you want to continue on with me, here we go.
Idiopathic Pulmonary Fibrosis is basically scar tissue that is building up on my lungs. There is no cure. The prognosis is death, usually in 2-4 years from diagnosis. As the scar tissue builds up, my lungs become less able to move oxygen to my brain and other organs. Usually death comes from respiratory failure, pulmonary emboli and/or pneumonia. Currently my lungs are only working at about 40% of what they should be. So I become tired quite easily and it doesn't take much for me to become short of breath. There have been some cases of prolonging life and life quality with immuno-suppressant drugs. They are basically like chemo drugs that kill off the immune system in the hopes that it will slow the body down from trying to fight itself. I was put on Imuran two weeks ago and had a very rough time of it.
By last week, I was becoming very weak and breathing was becoming very difficult, even without any exertion. On Friday I was scheduled to get a routine blood test to see how my body is responding medically to the new medicine. When I got to the doctor's office, I was running a fever of 102 and looking like something the cat dragged in. My doc was not happy with the way I was breathing or looking so she sent me over to the hospital for blood work and a chest x-ray. She called me later that evening and told me that I had some pneumonia and she was going to start me on antibiotics right away. She also told me that if I wasn't better or got worse that I should go to the ER and be checked out.
So we filled the prescription and I took my first dose Friday night. On Saturday, I was feeling a whole lot worse but figured I'd better give the medicine some time to work. All during the day I kept debating back and forth whether I should go in, each time talking myself out of it... we can't afford it, let the medicine do its job, etc. But it hurts... well, that could be from the pneumonia. But it feels like it did when I've had a blood clot before... well it could be nothing and you'd just be wasting their time and spending money you don't have. You know how that battle in the mind goes. On Sunday, pretty much the same thing.
Oliver went to church on Sunday and when I got up, I really thought I should go in. Had he taken his cell phone with him, I would have called him and told him I was doing just that. But since it was sitting on the bathroom counter, that wasn't going to work. Quite frankly, I didn't have the strength to walk all the way into the ktichen at church to tell him so I decided I'd just wait until he got home. I didn't want him to come home and see the car and me gone. By the time he got home, I was pretty bad but he was so tired. He'd done the catering all by himself since I wasn't there to do my part. So, I thought I'd just let him rest and I went and laid down. The whole time I was laying there, I kept thinking about when my friend died a couple of years ago. She died from a pulmonary embolism.
I went through the same checklist of symptoms that I had discussed with her on the phone the day she died. All of which I was answering yes to myself. My last words to her were, if you have any of those symptoms, don't wait... the last thing you want to do is mess with a blood clot. She died later that day because she didn't go get it checked out. By the time she had her daughter call the ambulance, it was too late. So there I am, lying in bed with this little voice playing in my head - are you going to listen to your own advice? Ok. I came out to tell Oliver that we should go but he was busy making me dinner and it did smell so good. Alright, I at least can have dinner before we go. By now my fever was down to about 101 and I didn't seem quite as worried. After dinner we started watching tv. Then I took a shower and changed into my nightgown and figured I'd hold out until morning and call the doc back.
As the night wore on, I was having more and more pain in my right lung which was weird because the pneumonia was worse in my left lung and I wasn't having any real pain there, just pressure. Finally around 11:30 pm I got up to go to the bathroom and stumbled a few times on the way in there. Something was terribly wrong. Quite frankly, I was afraid that if I went to sleep, I wouldn't wake up. I was that scared. I came out and asked him (finally) to take me in to the hospital. I still wasn't sure whether to go to the local one or up to Nashville where my pulmonologist was. It came down to feeling I didn't have the strength to make it to Nashville by car so we went local. We knew that if it was bad enough, they'd life flight me to Vanderbilt. We do have life flight insurance - wouldn't live without it here in the country.
It didn't take long for them to confirm that the pneumonia wasn't getting better. Since the pain seemed to be on the other side from where the worse pneumonia was showing, the ER doc decided to do a CT scan, given my history of pulmonary emboli and sure enough, there was a small clot in my right lower lobe of my lung. They admitted me to get me started on anticoagulants to thin out my blood and at least try to stabilize my temp, etc. By early morning, the hosptal doctor was trying to get Vanderbilt to take me but they were full. Since I was stable here, it was decided to keep me here and just do a phone consult with my doc's office up there. My regular pulmonologist is out of state this week, so it was a colleague that pulled my charts and talked with the docs here. They took me off the Imuran and I feel much better that I'm not on it.
So now I'm home. I'll be on blood thinners the rest of my life and that's fine. I always knew that if I had another episode with a clot, that would happen. I need to follow up with my pulmonologist on Tuesday and I'm just praying that they don't put me back on the Imuran. This was a close call. I almost didn't make it through and reality started setting in that one of these days, I won't. Not that any of us have guarantees, but it is a heavy load to have hanging over your head. There are a lot of people who live every day with that reality and it's not a pleasant state to be in. What's a simple cold for one person can literally kill me. That being said, I also know there is the Great Healer and He is working on my behalf. Apparently He wasn't ready for me yet or I wouldn't be here writing this now.
As you know, Oliver has been out of a job since last September. Just when we thought things were starting to look up, the bottom has fallen out yet again. Oliver was supposed to start a consulting job on Tuesday to help get a local restaruant back on its feet and the owner has entered rehab and the job is out the window. His wife fired everyone and is closing down for now. So we're still at no income, my breathing and lung issues are getting worse rapidly and quite frankly, not only do we not see light at the end of the tunnel but we're not even sure what tunnel we're in anymore. Depressed? um, yeah a little. I'd be lying if I told you we weren't. I thank God everyday, though, that we have him to lean on. He has a plan, we just don't know what it is. But one thing is for sure, we don't doubt that He does. THAT is what keeps us going. All this other stuff is nuisance. We're all going to die. The reality for me is that I'm slowly heading towards a sudden death. My body is shutting down, it cannot be stopped and one day it will just cease to exist. My spirit will move on and I will be leaving people behind that I care deeply about. Scary? yeah but also in a strange way, peaceful. I know there will be an end to all these hassles and that helps me keep things in a bit better perspective.
My health insurance will run out in Decemeber. At that time, who knows what will happen. Even my meds won't be covered anymore although we're working on getting help with those. I'll lose my specialists at Vanderbilt and have to rely on doctors who don't know how to deal with IPF. In the meantime, stress makes matters worse, so I cannot allow it to stress me out or I literally can't breathe. I still have the lump in my neck to be checked out and who knows what medical mystery road that will take me down. I'm getting tired. There are days when I want to take the boatload of meds I take now, chuck them out the window and let the chips fall where they may. And yet, I'm not ready to give up fighting. I kinda like living. I've gotten a lot out of it and would like to see more days, but I would prefer more quality days, that's for sure.
So if some days I seem a little down or frustrated, please bear with me. I try not to drag anybody else down with me. I wish I could say I was going to live forever - I'm not. I struggle with pulling back from everyone I love so that when I am gone, it won't hurt them so much. Then there is the part of me that wants to grab them and hold on for dear life for as long as I have. Not one single one of us knows what tomorrow holds. Why do we spend so much time planning for it as if our lives depend upon it? Reach out and hug that person you've been wanting to. Make amends with that person you're at odds with. Life is short, no matter how long you live. That's the reality for us all.
Idiopathic Pulmonary Fibrosis is basically scar tissue that is building up on my lungs. There is no cure. The prognosis is death, usually in 2-4 years from diagnosis. As the scar tissue builds up, my lungs become less able to move oxygen to my brain and other organs. Usually death comes from respiratory failure, pulmonary emboli and/or pneumonia. Currently my lungs are only working at about 40% of what they should be. So I become tired quite easily and it doesn't take much for me to become short of breath. There have been some cases of prolonging life and life quality with immuno-suppressant drugs. They are basically like chemo drugs that kill off the immune system in the hopes that it will slow the body down from trying to fight itself. I was put on Imuran two weeks ago and had a very rough time of it.
By last week, I was becoming very weak and breathing was becoming very difficult, even without any exertion. On Friday I was scheduled to get a routine blood test to see how my body is responding medically to the new medicine. When I got to the doctor's office, I was running a fever of 102 and looking like something the cat dragged in. My doc was not happy with the way I was breathing or looking so she sent me over to the hospital for blood work and a chest x-ray. She called me later that evening and told me that I had some pneumonia and she was going to start me on antibiotics right away. She also told me that if I wasn't better or got worse that I should go to the ER and be checked out.
So we filled the prescription and I took my first dose Friday night. On Saturday, I was feeling a whole lot worse but figured I'd better give the medicine some time to work. All during the day I kept debating back and forth whether I should go in, each time talking myself out of it... we can't afford it, let the medicine do its job, etc. But it hurts... well, that could be from the pneumonia. But it feels like it did when I've had a blood clot before... well it could be nothing and you'd just be wasting their time and spending money you don't have. You know how that battle in the mind goes. On Sunday, pretty much the same thing.
Oliver went to church on Sunday and when I got up, I really thought I should go in. Had he taken his cell phone with him, I would have called him and told him I was doing just that. But since it was sitting on the bathroom counter, that wasn't going to work. Quite frankly, I didn't have the strength to walk all the way into the ktichen at church to tell him so I decided I'd just wait until he got home. I didn't want him to come home and see the car and me gone. By the time he got home, I was pretty bad but he was so tired. He'd done the catering all by himself since I wasn't there to do my part. So, I thought I'd just let him rest and I went and laid down. The whole time I was laying there, I kept thinking about when my friend died a couple of years ago. She died from a pulmonary embolism.
I went through the same checklist of symptoms that I had discussed with her on the phone the day she died. All of which I was answering yes to myself. My last words to her were, if you have any of those symptoms, don't wait... the last thing you want to do is mess with a blood clot. She died later that day because she didn't go get it checked out. By the time she had her daughter call the ambulance, it was too late. So there I am, lying in bed with this little voice playing in my head - are you going to listen to your own advice? Ok. I came out to tell Oliver that we should go but he was busy making me dinner and it did smell so good. Alright, I at least can have dinner before we go. By now my fever was down to about 101 and I didn't seem quite as worried. After dinner we started watching tv. Then I took a shower and changed into my nightgown and figured I'd hold out until morning and call the doc back.
As the night wore on, I was having more and more pain in my right lung which was weird because the pneumonia was worse in my left lung and I wasn't having any real pain there, just pressure. Finally around 11:30 pm I got up to go to the bathroom and stumbled a few times on the way in there. Something was terribly wrong. Quite frankly, I was afraid that if I went to sleep, I wouldn't wake up. I was that scared. I came out and asked him (finally) to take me in to the hospital. I still wasn't sure whether to go to the local one or up to Nashville where my pulmonologist was. It came down to feeling I didn't have the strength to make it to Nashville by car so we went local. We knew that if it was bad enough, they'd life flight me to Vanderbilt. We do have life flight insurance - wouldn't live without it here in the country.
It didn't take long for them to confirm that the pneumonia wasn't getting better. Since the pain seemed to be on the other side from where the worse pneumonia was showing, the ER doc decided to do a CT scan, given my history of pulmonary emboli and sure enough, there was a small clot in my right lower lobe of my lung. They admitted me to get me started on anticoagulants to thin out my blood and at least try to stabilize my temp, etc. By early morning, the hosptal doctor was trying to get Vanderbilt to take me but they were full. Since I was stable here, it was decided to keep me here and just do a phone consult with my doc's office up there. My regular pulmonologist is out of state this week, so it was a colleague that pulled my charts and talked with the docs here. They took me off the Imuran and I feel much better that I'm not on it.
So now I'm home. I'll be on blood thinners the rest of my life and that's fine. I always knew that if I had another episode with a clot, that would happen. I need to follow up with my pulmonologist on Tuesday and I'm just praying that they don't put me back on the Imuran. This was a close call. I almost didn't make it through and reality started setting in that one of these days, I won't. Not that any of us have guarantees, but it is a heavy load to have hanging over your head. There are a lot of people who live every day with that reality and it's not a pleasant state to be in. What's a simple cold for one person can literally kill me. That being said, I also know there is the Great Healer and He is working on my behalf. Apparently He wasn't ready for me yet or I wouldn't be here writing this now.
As you know, Oliver has been out of a job since last September. Just when we thought things were starting to look up, the bottom has fallen out yet again. Oliver was supposed to start a consulting job on Tuesday to help get a local restaruant back on its feet and the owner has entered rehab and the job is out the window. His wife fired everyone and is closing down for now. So we're still at no income, my breathing and lung issues are getting worse rapidly and quite frankly, not only do we not see light at the end of the tunnel but we're not even sure what tunnel we're in anymore. Depressed? um, yeah a little. I'd be lying if I told you we weren't. I thank God everyday, though, that we have him to lean on. He has a plan, we just don't know what it is. But one thing is for sure, we don't doubt that He does. THAT is what keeps us going. All this other stuff is nuisance. We're all going to die. The reality for me is that I'm slowly heading towards a sudden death. My body is shutting down, it cannot be stopped and one day it will just cease to exist. My spirit will move on and I will be leaving people behind that I care deeply about. Scary? yeah but also in a strange way, peaceful. I know there will be an end to all these hassles and that helps me keep things in a bit better perspective.
My health insurance will run out in Decemeber. At that time, who knows what will happen. Even my meds won't be covered anymore although we're working on getting help with those. I'll lose my specialists at Vanderbilt and have to rely on doctors who don't know how to deal with IPF. In the meantime, stress makes matters worse, so I cannot allow it to stress me out or I literally can't breathe. I still have the lump in my neck to be checked out and who knows what medical mystery road that will take me down. I'm getting tired. There are days when I want to take the boatload of meds I take now, chuck them out the window and let the chips fall where they may. And yet, I'm not ready to give up fighting. I kinda like living. I've gotten a lot out of it and would like to see more days, but I would prefer more quality days, that's for sure.
So if some days I seem a little down or frustrated, please bear with me. I try not to drag anybody else down with me. I wish I could say I was going to live forever - I'm not. I struggle with pulling back from everyone I love so that when I am gone, it won't hurt them so much. Then there is the part of me that wants to grab them and hold on for dear life for as long as I have. Not one single one of us knows what tomorrow holds. Why do we spend so much time planning for it as if our lives depend upon it? Reach out and hug that person you've been wanting to. Make amends with that person you're at odds with. Life is short, no matter how long you live. That's the reality for us all.
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