Twenty-nine days after I first felt an unexplained nausea, I finally passed my kidney stone from hell. A half centimeter of sheer agony finally just "dropped out" after weeks of agony, gallons of water, constipating doses of narcotics and a lithotripsy treatment that left unexpected large and ugly bruises on my thighs.
So, I've basically lost a month of my life. I'm used to losing days or even a week or more to my various degrees of illness these last few years, but I'm still reeling from losing a month. It's not that I was in bed the whole time - although a good deal of it was spent trying to either get comfortable by laying down or sleeping to avoid the pain - rather, it's that the nausea, pain and constant urinary tension never let up the entire month and it ruled my life. Except for a day or two, my life was ruled by this nightmare that my kidney decided to let go. Even better? I have 2 or 3 more in each kidney just sitting there. I've always had stones in my kidneys anytime I've been xrayed or CT'd, so I know that any time another one might break loose and start a hellacious journey again. Just great.
I'm getting good at getting back on my feet again. But I'm getting tired. Each "break" from life seems to last longer, takes more recovery time to get back up to speed and I lose days and now weeks I can never get back. When you're over 50 like I am, that takes on a whole new meaning and urgency. I want time with my boys, damn it! And I want to be a whole mom, not only partially there. They are SO good when I am sick, bless their hearts. They - and my wonderful hubby - never complain that mom is in bed again. And my daughters call to check in as best they can with their busy 20-something lives. They just come by with kisses occasionally and love it when I'm up again.
So, really, that's all I can ask, isn't it? Thank you, Lord, after all. Because I always have these lovely faces to greet me when I'm "back to life" again. Thank God. I'll never take that for granted.
Amen.
Saturday, September 29, 2012
Saturday, September 22, 2012
If you haven't got your health, you haven't gotten anything....
"If you haven't got your health, you haven't got anything"....
I remember this phrase from my childhood as a commercial phrase, but ever since it was in the movie Princess Bride, it's become sort of a comical catch phrase that I have only recently begun to appreciate. Especially on days like today.
I've been in the process of processing a lovely large 5mm kidney stone for the better part of a month now. 22 days exactly. Last week it became acute and sent me to the ER where I got the major pain meds to send me back home and on my way until it decided to make it's final appearance (or my scheduled lithotripsy procedure on 10/1). A day after I got home from the ER, it moved to a much better neighborhood lower in my poor ureter and I have gotten more and more comfortable each day until I woke up this morning pain free. Yea! Since we had a day planned with all fun family activities, I was very happy with the timing.
We spent the entire day on our first "official" homeschool field trip with hubby in tow as well - and I was on my feet the better part of 5 hours with hardly a thought of discomfort except for my sore back, which is just normal for me. I was amazed! It was such a gift! We came home in time to go run some errands for our Cub Scout meeting tonight and get over there to enjoy time with our boys and their friends and parents.
It is days like this when I truly love my family, my blessings, God's goodness and all things good in life. Even though it was busy, it was doable - and we got through it with flying colors. Finally got to rest a little and drank a hard cider - the first alcohol I had dared since I went to the ER. Except for the happiness that they weren't bothering me, I hardly gave a thought to my kidney stones. And that is the way it should be. That is life. That is living.
Then it hit again. I realized I wasn't able to urinate. The pressure started again. The pain in my kidneys started flaring up. I realized I had hit a snag again. This baby is NOT coming out as planned after all. I may be looking at another ER visit soon. I may be in for more vomit-inducing pain and agony again. I was blessed with having 3 doses of major pain meds left from last week and thank the great and good Lord, they are working for the moment which is the only reason I can write. However - it totally brought my "normal" day to a halt. My first good day in 22 and my run is over. Damn.
If you haven't got your health, you haven't got anything. So true. So true. Stay tuned for further updates....
I remember this phrase from my childhood as a commercial phrase, but ever since it was in the movie Princess Bride, it's become sort of a comical catch phrase that I have only recently begun to appreciate. Especially on days like today.
I've been in the process of processing a lovely large 5mm kidney stone for the better part of a month now. 22 days exactly. Last week it became acute and sent me to the ER where I got the major pain meds to send me back home and on my way until it decided to make it's final appearance (or my scheduled lithotripsy procedure on 10/1). A day after I got home from the ER, it moved to a much better neighborhood lower in my poor ureter and I have gotten more and more comfortable each day until I woke up this morning pain free. Yea! Since we had a day planned with all fun family activities, I was very happy with the timing.
We spent the entire day on our first "official" homeschool field trip with hubby in tow as well - and I was on my feet the better part of 5 hours with hardly a thought of discomfort except for my sore back, which is just normal for me. I was amazed! It was such a gift! We came home in time to go run some errands for our Cub Scout meeting tonight and get over there to enjoy time with our boys and their friends and parents.
It is days like this when I truly love my family, my blessings, God's goodness and all things good in life. Even though it was busy, it was doable - and we got through it with flying colors. Finally got to rest a little and drank a hard cider - the first alcohol I had dared since I went to the ER. Except for the happiness that they weren't bothering me, I hardly gave a thought to my kidney stones. And that is the way it should be. That is life. That is living.
Then it hit again. I realized I wasn't able to urinate. The pressure started again. The pain in my kidneys started flaring up. I realized I had hit a snag again. This baby is NOT coming out as planned after all. I may be looking at another ER visit soon. I may be in for more vomit-inducing pain and agony again. I was blessed with having 3 doses of major pain meds left from last week and thank the great and good Lord, they are working for the moment which is the only reason I can write. However - it totally brought my "normal" day to a halt. My first good day in 22 and my run is over. Damn.
If you haven't got your health, you haven't got anything. So true. So true. Stay tuned for further updates....
Sunday, September 9, 2012
Walking on sunshine....
My spinal fusion surgery was 2.5 years ago.
I am enjoying the good feeling of being on Cipro for a horrible infection last week.
The weather is B.E.A....utiful today. So I walked.
I woke up at 7am to wonderful sunshine in my window, quiet in the house and feeling as normal as I do anymore. And no aches! But I had the nagging memory of the nurse at the urgent care center telling me I had HIGH blood pressure at 133 over something. I about dropped in my tracks. I have had extremely LOW blood pressure almost all my life. In fact, it didn't start to rise until I started being a SAHM with my boys. I figured that should explain it :) And maybe it was because I had some sort of awful bladder/kidney infection raging last week that spiked my BP. Not sure, but the irritating thought of it and how different my lifestyle was that was contributing to it got my butt out of bed and out the door.
I remember how mentally calming and physically invigorating those walks used to be. I loved them. I felt spiritually restored by them. I miss them. And as much as I try, I have to be honest, they feel nothing like that anymore. And most of it has changed in the last couple of years.
The main change is my legs. I am SO grateful to God, my surgeon and science that my surgery worked so well. I am pain free 99% of the time. But - my surgeon wasn't able to correct my vertebrae shift, only stabilize it. And it will never be straight again. So although I am free from pain, my nerves will never be correctly aligned again. Hence, my feet will probably always feel like they are somewhat "not attached" to my legs. Yes, they work fine. Yes, I am able to walk and function like most people. However, I cannot feel alot of the nerves that work my lower calves, ankles and mostly feet. After my right leg was temporarily paralyzed after the surgery, I never got all of my nerve function back in that leg and foot. When I walk, the right leg slightly "flops" and my walk "sounds" funny. But the hardest part to adjust to is having to mentally "tell" my feet and legs to walk.
If you've never had numbness in your feet, you may not understand this. Most of us take walking for granted - way too much for granted. We simply focus on where we want to go and our feet take us there. We don't even think about it. Something changed after my surgery and I HAVE to think about where I want my feet to go. Some nerve somewhere is dead and I have to think about putting one foot in front of the other every time I go for a walk. Weird, huh? A bummer, too, because it turns a lovely walk into a whole different experience.
It is still beautiful, but an effort. Instead of marveling at the beautiful of the world and the walk, part of me has to remember to pickup each foot so I don't hurl myself at the sidewalk. So a small part of my brain is always distracted - and I must say, a little pissed off at having to do it. Mad because I will never feel as healthy or fit as I did, no matter how I look. And the blood pressure issue just makes that more apparent.
But I am still that person inside. I still love beautiful morning walks in the quiet. I still remember how wonderful they are. And so I keep trying. Maybe one day. Maybe.
Peace out.
Saturday, July 7, 2012
Brain Fog..or...Funny weather we're having, isn't it?
As FLYlady would say, the Midnight Editor is working overtime tonight. I seem to have some many things I want to put on paper - or virtual paper, anyway. I kept hearing this title over and over again about Brain Fog and knew I needed to write something.
It may have been because I read an article today explaining some of the research done on "brain fog" of Lupus patients - something I've been very interested in from the time it started to affect me. My alternate title for this entry was "From Honor Student to ....what was I saying again??". Yep, that's sort of my story.
Part of me wants to talk about how I wasn't always like this. I was the precocious, intelligent Honor Student who got As on everything and loved being at the front of the class. I love the start of each new school year, the new class list and the smell of the next textbooks. I was a nerd and I loved to learn. I read the encyclopedia (when they were still printed on paper) and dictionary, in a pinch. I felt like an empty cup and I just poured knowledge into my brain as fast as I could. Maybe I knew there would be a time I would feel my brain is "full"...like now.
I remember when I started having trouble - I couldn't keep up with the responsibilities of my job as a program manager in the IT department at work. I had worked hard to earn the promotion from programmer and once I was there, I realized it was too much for me. I stepped back down to my programming job, but it still didn't feel comfortable. Luckily for me, I got married soon thereafter and left to have a baby almost immediately and I could have sworn I heard my bosses breath a sigh of relief that I was off their hands. I sighed with relief, too, because I don't know how much more I could have handled.
I didn't get my diagnosis until five years later, but by that time I had been home tending to my two baby boys and quick intelligence didn't mean as much as quick reflexes - which I still had. :) I remember having a hard time pronouncing words but I thought it was just because I was home all day alone and wasn't talking to anyone very much - in English, that is. After my diagnosis, things started to make sense. At least as much as they could to my foggy brain. I had started to fear driving because I felt like I was still asleep half the time - I was, because my brain was still asleep. I sideswiped a parked car one day - and was surprised it hadn't happened earlier. I was thoroughly shaken, but also hoped that people in my life would realize what was happening. I started being careful of when I drove and how. I noticed I was forgetting names and places and even what I was talking about in the middle of a sentence. Or I knew what I wanted to say..but couldn't think of the word. I remembered my grandmother had that problem, but thought she was alot older than I am. But was she?
So here I am, in the middle of the night, writing this because...why? Why have I always written? I think when I was a child, it was hoping that I'd look back and understand myself and remember what had happened - and how brilliantly I had written it....but when I write now, it is for a different reason. So I can look back and remember what had happened - and how brilliantly I was still writing it. :) And maybe, just maybe, because if I write what my foggy brain is thinking and someone reads it one day, then I won't disappear into a foggy brain illness that will claim me one day. I will still be here, on these pages, even when I can't write them anymore. And that's probably the reason I've always written. So that someone will know I am here. One day.
It may have been because I read an article today explaining some of the research done on "brain fog" of Lupus patients - something I've been very interested in from the time it started to affect me. My alternate title for this entry was "From Honor Student to ....what was I saying again??". Yep, that's sort of my story.
Part of me wants to talk about how I wasn't always like this. I was the precocious, intelligent Honor Student who got As on everything and loved being at the front of the class. I love the start of each new school year, the new class list and the smell of the next textbooks. I was a nerd and I loved to learn. I read the encyclopedia (when they were still printed on paper) and dictionary, in a pinch. I felt like an empty cup and I just poured knowledge into my brain as fast as I could. Maybe I knew there would be a time I would feel my brain is "full"...like now.
I remember when I started having trouble - I couldn't keep up with the responsibilities of my job as a program manager in the IT department at work. I had worked hard to earn the promotion from programmer and once I was there, I realized it was too much for me. I stepped back down to my programming job, but it still didn't feel comfortable. Luckily for me, I got married soon thereafter and left to have a baby almost immediately and I could have sworn I heard my bosses breath a sigh of relief that I was off their hands. I sighed with relief, too, because I don't know how much more I could have handled.
I didn't get my diagnosis until five years later, but by that time I had been home tending to my two baby boys and quick intelligence didn't mean as much as quick reflexes - which I still had. :) I remember having a hard time pronouncing words but I thought it was just because I was home all day alone and wasn't talking to anyone very much - in English, that is. After my diagnosis, things started to make sense. At least as much as they could to my foggy brain. I had started to fear driving because I felt like I was still asleep half the time - I was, because my brain was still asleep. I sideswiped a parked car one day - and was surprised it hadn't happened earlier. I was thoroughly shaken, but also hoped that people in my life would realize what was happening. I started being careful of when I drove and how. I noticed I was forgetting names and places and even what I was talking about in the middle of a sentence. Or I knew what I wanted to say..but couldn't think of the word. I remembered my grandmother had that problem, but thought she was alot older than I am. But was she?
So here I am, in the middle of the night, writing this because...why? Why have I always written? I think when I was a child, it was hoping that I'd look back and understand myself and remember what had happened - and how brilliantly I had written it....but when I write now, it is for a different reason. So I can look back and remember what had happened - and how brilliantly I was still writing it. :) And maybe, just maybe, because if I write what my foggy brain is thinking and someone reads it one day, then I won't disappear into a foggy brain illness that will claim me one day. I will still be here, on these pages, even when I can't write them anymore. And that's probably the reason I've always written. So that someone will know I am here. One day.
Choices
The older I get and the more I realize I need to modify my life to work with my illness, the more I realize that my life is more and more about choices. I know life has always been about choices, of course. I've had to choose friends, classes, jobs, mates, homes...not all wise choices the first time, I'll grant you, but I did get better with practice and learned how to make better choices. These are not the choices I'm faced with now.
As anyone familiar with Christine Miseradino's Spoon Theory knows, a person with a chronic illness has a limited number of "spoons" of energy to ration out to spend each day. The necessity of choosing how to use these spoons becomes apparent as soon as the illness appears, but the awareness of the choices we are making doesn't happen as fast. I've been living with an invisible illness for six years and I felt the effects of my autoimmune disease for years before I was diagnosed, but it wasn't until recently that I realized that EVERYTHING I do, including my relationships, I need to do with the limited energy I have.
I had noticed in the last few years that I hadn't been keeping up with my friends as much as before. I attributed that to being in my late forties (now fifties) and taking care of my youngest two children at such a late age as well as watching my grandchildren occasionally. I knew I was doing my best and even though I spent some days in bed, I thought I was living a pretty "normal" life dealing with my illness. Until my best friend had surgery.
Two years ago, I also had major spinal surgery. It took months to recover from the surgery itself and the resulting temporary paralysis in one of my legs. I know how much love and support I needed to get through those times - and I remember going through that time with a sort of "blinders on" mentality to keep my focused and recovering. I don't remember if my BFF came to see me at the hospital or home or how much we kept in touch. I really don't - and it doesn't matter to me - but when she had surgery two weeks ago and I couldn't find the time or energy to go visit her, I realized how much I had changed. Before my illness, I would have dropped everything I had planned and worked a visit to her into my busy schedule. Now, I don't have anything left of myself for friendships anymore. If I can't talk to you on the phone or text message you or Facebook chat with you....I can't keep up our friendship. I don't have it in me. I save what little energy I have for 1) my immediate family, 2) my household chores and 3) my part time job, which is becoming more and more optional each day also. If my job didn't entail selling a product I completely love and use myself, I would have quit years ago! My friendships don't even make the list...and I feel so awful because that even includes my extended family. I can't use a whole days' energy to travel a few hours to see family for a picnic, because I need that energy to either rest, catch up on housework, or spend it with my immediate family. I feel lazy, but I know deep in my soul that it is not that. I need to rest in the morning because I wake up swollen and sore and foggy. I have a few good hours where I need to put my house and family in order and get them through dinner, then I am wiped out and keep myself awake to put my boys to sleep and have a little quiet time before I go back to sleep.
I realize that I have chosen to let my friendships fall aside. I feel awful about that. I love and care about my friends, but while they are leading their busy lives, I am making the choices I need to spend my "good" hours with my closest loved ones. I hope they know and understand this and I hope one day I can forgive myself for not being the friend I used to be - or wanted to be.
I didn't choose my illness...but I am choosing how to spend the "good" hours I do have. I am doing the best that I can. I am choosing to accept this. Choices are hard.
As anyone familiar with Christine Miseradino's Spoon Theory knows, a person with a chronic illness has a limited number of "spoons" of energy to ration out to spend each day. The necessity of choosing how to use these spoons becomes apparent as soon as the illness appears, but the awareness of the choices we are making doesn't happen as fast. I've been living with an invisible illness for six years and I felt the effects of my autoimmune disease for years before I was diagnosed, but it wasn't until recently that I realized that EVERYTHING I do, including my relationships, I need to do with the limited energy I have.
I had noticed in the last few years that I hadn't been keeping up with my friends as much as before. I attributed that to being in my late forties (now fifties) and taking care of my youngest two children at such a late age as well as watching my grandchildren occasionally. I knew I was doing my best and even though I spent some days in bed, I thought I was living a pretty "normal" life dealing with my illness. Until my best friend had surgery.
Two years ago, I also had major spinal surgery. It took months to recover from the surgery itself and the resulting temporary paralysis in one of my legs. I know how much love and support I needed to get through those times - and I remember going through that time with a sort of "blinders on" mentality to keep my focused and recovering. I don't remember if my BFF came to see me at the hospital or home or how much we kept in touch. I really don't - and it doesn't matter to me - but when she had surgery two weeks ago and I couldn't find the time or energy to go visit her, I realized how much I had changed. Before my illness, I would have dropped everything I had planned and worked a visit to her into my busy schedule. Now, I don't have anything left of myself for friendships anymore. If I can't talk to you on the phone or text message you or Facebook chat with you....I can't keep up our friendship. I don't have it in me. I save what little energy I have for 1) my immediate family, 2) my household chores and 3) my part time job, which is becoming more and more optional each day also. If my job didn't entail selling a product I completely love and use myself, I would have quit years ago! My friendships don't even make the list...and I feel so awful because that even includes my extended family. I can't use a whole days' energy to travel a few hours to see family for a picnic, because I need that energy to either rest, catch up on housework, or spend it with my immediate family. I feel lazy, but I know deep in my soul that it is not that. I need to rest in the morning because I wake up swollen and sore and foggy. I have a few good hours where I need to put my house and family in order and get them through dinner, then I am wiped out and keep myself awake to put my boys to sleep and have a little quiet time before I go back to sleep.
I realize that I have chosen to let my friendships fall aside. I feel awful about that. I love and care about my friends, but while they are leading their busy lives, I am making the choices I need to spend my "good" hours with my closest loved ones. I hope they know and understand this and I hope one day I can forgive myself for not being the friend I used to be - or wanted to be.
I didn't choose my illness...but I am choosing how to spend the "good" hours I do have. I am doing the best that I can. I am choosing to accept this. Choices are hard.
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