It's been a month since I started treatment for my new reality. I've got a frequent flyer card at the hospital. Having standing orders for lab work every two weeks is all it took. I've figured out my daily medication dance - some I take in the morning, some I take on an empty stomach, some I have to take with food, some only at night. It's kind of crazy when I step back and look at it but I've gotten it down to almost second nature.
Last week I met with my kidney specialist to see how I'm responding to her treatment plan and figure out next steps. It was amazing to see what a difference my labs show after such a short amount of time. Kidneys
still functioning perfectly, my proteinuria is down to 3 from 18 a
month ago. My risk factor for long term decline is down to only a
moderate chance. She also said that I'm no longer in danger of developing new blood clots and if I keep this up I should be all better in a
few months and can taper off my meds. Best part: no more fluid
restrictions and I can *try* running again and see how it goes.
There was a little bump at the end of the week when I was so light headed and feeling sick at work that I went to the nurse and had my blood pressure checked. It was SUPER low so I went home and called the doctor. Apparently it was hot enough outside added to my higher dose of diuretic I've been taking that I was dehydrated. Drank some Gatorade and lowered my diuretic dose and I'm all better again.
This week I met with my regular primary care doctor since it has been three months since we made our deal about going back on Coumadin - three months to the day as it turns out although I didn't do that on purpose. It just happened to be the day I ran out of my medication and I didn't want to refill that prescription again. He agrees that I've made enough progress that I can stop taking it. Hopefully forever this time! I've been celebrating with a huge salad every chance I've had because I can eat whatever greens I want to again.
It's no secret I'm into natural and alternative medicine and I wonder how much the essential oils I've added to my daily regiment have aided in this quick turn around from diagnosis to now. I look at it that they are all natural and they can't hurt so why not add it to my mainstream medicine regiment. If it helps, I've gained speed toward good health; and if it doesn't it won't hurt anything by trying. After all the research and how much better I feel when I use them, I believe it is helping so I'm sticking with it.
Here's to summer and improved health. Although I could do without the heat outside, I'm certainly not complaining about anything in my life right now.
Thursday, June 20, 2013
Monday, June 3, 2013
Five Stages of Grief
I kind of knew about this whole five stages of grief theory because years ago there was a cartoon giraffe that people sent around in email (this was before the days of 'sharing' on Facebook) but I had no idea it was real. However, I've been through them all and can tell you they are very very real... I wish I'd had the foresight to save that little cartoon so I could insert it here but alas I didn't. Here's how the stages have played out for me now that I have the benefit of hindsight.
Denial - this happened many times. I denied there was even anything wrong before I finally went to see the doctor with both lungs halfway blocked with blood clots. Happened again when my legs started swelling up and I didn't mention it until it was impeding my ability to do yoga. In the overall scheme of things, I think I excel at this one the very most! How about when I was so sick I ended up in the ER for five hours but was still planning on going to spend twelve hours at a dance competition. "I'M FINE!"
Anger - This one was kind of overshadowed but I know I was mad for several weeks in my initial treatment when I had to give up all my favorite foods because of my blood thinners. I think I could have gotten my dose regulated far sooner had I not insisted on still eating broccoli at least a couple of times a week. I was also briefly but epically here right after my final diagnosis when I declared to the Universe that this shit wasn't going to stop me...
Bargaining - I bargained with my doctor when he wanted to put me back on Coumadin when we realized I hadn't stayed on it long enough initially for my clots to be dissolved. He was nice enough to humor me with my bargaining antics. Probably because I'm super duper good at it!
Depression - this one was the most marked for me since I've never suffered with depression. When it became clear there were more things going on with me than a silly little blood clot that would eventually go away I got really depressed. It didn't help that I had ballooned up an extra thirty pounds of water weight in three weeks so on top of dealing with a long-term illness I was super bloated with nothing that fit. Literally. Anyone would be depressed at that point!
Acceptance - I've gained this level in the last couple of weeks. Treatment options are working and I'm getting better and better every day. Yes, I have kidney disease that will never go away, but I'm okay and I can still do pretty much everything I want to. I've had to give up running for a time, but I still have yoga and I can swim and play tennis which I'm going to incorporate more of this summer to stay active. The best part is that I didn't die and chances are I'll never be worse than I was at my most depressing time if my treatment plan continues to work well.
Now that you've seen how things played out with me... I used my overachiever skills and my advanced youtube searching capabilities and found the giraffe video! It is just as funny years later although for more personal and ironic reasons. Here it is for your viewing enjoyment:
So, life, what's the next chapter for me?
Denial - this happened many times. I denied there was even anything wrong before I finally went to see the doctor with both lungs halfway blocked with blood clots. Happened again when my legs started swelling up and I didn't mention it until it was impeding my ability to do yoga. In the overall scheme of things, I think I excel at this one the very most! How about when I was so sick I ended up in the ER for five hours but was still planning on going to spend twelve hours at a dance competition. "I'M FINE!"
Anger - This one was kind of overshadowed but I know I was mad for several weeks in my initial treatment when I had to give up all my favorite foods because of my blood thinners. I think I could have gotten my dose regulated far sooner had I not insisted on still eating broccoli at least a couple of times a week. I was also briefly but epically here right after my final diagnosis when I declared to the Universe that this shit wasn't going to stop me...
Bargaining - I bargained with my doctor when he wanted to put me back on Coumadin when we realized I hadn't stayed on it long enough initially for my clots to be dissolved. He was nice enough to humor me with my bargaining antics. Probably because I'm super duper good at it!
Depression - this one was the most marked for me since I've never suffered with depression. When it became clear there were more things going on with me than a silly little blood clot that would eventually go away I got really depressed. It didn't help that I had ballooned up an extra thirty pounds of water weight in three weeks so on top of dealing with a long-term illness I was super bloated with nothing that fit. Literally. Anyone would be depressed at that point!
Acceptance - I've gained this level in the last couple of weeks. Treatment options are working and I'm getting better and better every day. Yes, I have kidney disease that will never go away, but I'm okay and I can still do pretty much everything I want to. I've had to give up running for a time, but I still have yoga and I can swim and play tennis which I'm going to incorporate more of this summer to stay active. The best part is that I didn't die and chances are I'll never be worse than I was at my most depressing time if my treatment plan continues to work well.
Now that you've seen how things played out with me... I used my overachiever skills and my advanced youtube searching capabilities and found the giraffe video! It is just as funny years later although for more personal and ironic reasons. Here it is for your viewing enjoyment:
So, life, what's the next chapter for me?
Sunday, May 19, 2013
Did I say rock bottom? Just kidding!!
Remember when I said I'd hit rock bottom and then in jest said something about how I hoped it was the bottom because that would be a sick joke if it wasn't? Well, I've learned the truth of 'never say never' and to never assume you've seen the worst it could be... because man did it get worse last week. Here's what happened - in chronological order because I'm OCD like that of course.
First a confession... I already knew what I had on my last blog post - probably why I was already at the anger stage. My insurance company has an online medical record and if you are smart like me you know that those tests your doctor orders are usually online long before you meet with that doctor to see what they showed. So, Tuesday I saw the pathology report with my diagnosis: Membranous Nephropathy. And of course I googled the shit out of it.
Bottom line: there is no cure. The membranes in my kidneys are enlarged and therefor don't work as well so I lose all my protein in my urine. But two thirds of the people diagnosed end up in remission so my chances are good. I met with my specialist on Thursday still a little sore and weak from the biopsy but having spent the better part of the week on my couch helped. She started me on several new meds and ordered additional tests including standing orders for them to be repeated every two weeks to monitor how well the new meds are working. So much for seeing the doctor and the lab less often, eh? Both meds are designed to treat the symptom of losing protein so I don't also end up with my kidney function declining. I left the doctor with the knowledge that I really had the answers I've been searching for (ROOT CAUSE!) and a plan of attack. I felt hopeful and happy.
And then Friday afternoon I started feeling crappy. At first I chalked it up to having taken a higher dose of my diuretic which my doc said I could try to see if the water retention would go down faster (I'm not a patient woman, remember!). I also read on the information sheet of one of the new meds that I had started that it was common to feel run down and yucky when first taking the med. (Am I the only person who actually reads that whole paper they send you home with from the pharmacy?) I logged off work for a nap to try and feel better about two o'clock that afternoon. My kidneys ached and I couldn't get comfortable and generally felt awful. Got very little sleep on Friday night and woke up Saturday morning no better.
Saturday morning an hour before I was supposed to leave for Big Sister's dance competition where I was looking at nine hours on the high school bleachers, I couldn't take a breath without excruciating pain in the abdomen which radiated up my back, through my chest and out my shoulder. The deeper the breath the worse the pain. I was faced with the hardest thing ever as an overachiever - the knowledge that no matter how much I wanted to power through whatever I had in my way I wasn't going to be able to do it all. I still hate to think about it! Here's something else you might not know about me: I hate asking for help. Of course it goes along with my overachiever tendencies because if I have to ask for help then I've made an irrefutable statement that I cannot do everything. So not okay with me and after all of these years of doing it all I am very, very set in my ways.
Luckily I have amazing friends who are also close neighbors. I called Mommy of Big Sister's BFF who is also one of my BFF's and a fellow dance mom since her older daughter is also on our competition team. She is like a force to be reckoned with in a crisis. As in I think that FEMA would be a great place for her in the event of a major disaster. Within minutes she had called Mommy of Baby Sister's BFF next door who came and took her away - in her pajamas - to spend the day with them. And she rushed over to grab Big Sister and all her gear for the competition whisking her away to do hair and makeup and be her surrogate mamma for the entire 9 house so Hubby could take me to the Emergency Room at our nearest hospital.
Five hours I spent in the ER. Five. Hours.
Basically I was one of the few lucky people who's kidney bleeds after the biopsy. The blood pooled under my diaphragm and created irritation both on the kidney and the diaphragm so every breath resulted in intense pain. Of course they ran a total blood work up to make sure there wasn't anything else going on plus a urinalysis which confirmed there was blood in my urine and therefor my kidney. Then my blood pressure was super duper low and wouldn't stablize so I had to stay a while longer - turns out I was a bit dehydrated. Gee, isn't that what one would expect when I'm on a powerful diuretic and have liquid restrictions? Sheesh. I got some great narcotics to knock me out and curb the pain while my body reabsorbed the blood my kidney leaked out because there was nothing else they could do. Most of Mother's Day weekend was a narcotic blur full of pain and suffering. Plus the emotional pain of having missed watching my daughter dance for the first time ever. Having to let go and accept that it doesn't make me a bad parent was difficult but her surrogate mom for the day brought me video and score sheets so in the end I didn't have to feel like I missed a thing.
This week has been much better. *knock on wood* My pain was gone by Tuesday and the novelty of taking a deep breath has returned. Each day on my treatment has me feeling better. I'm also using essential oils to treat the nausea side-effect of whichever med it is that causes that and to generally improve my mood. Hubby calls them my magic oils which might be accurate since they make me happy. I say "what does it hurt", right? I even spent twelve hours at Big Sister's dance competition yesterday like I hadn't been in the hospital a week ago. Go me!
I guess the visit to the hospital showed that overall I've been super lucky in this whole journey. I've never been hospitalized even when both my lungs were half blocked with blood clots. I can still work and play and care for my children even if my house is less than pristine most days because I don't have the energy for housecleaning on top of it all. And if I had to chose my kidney disease, I got the one I would have picked. The treatment is relatively benign, it is a slowly progressing disease where it would be decades before I need dialysis/transplant and my chances are higher of going into remission than progressively getting worse.
So yeah, I have kidney disease. But I'll be fine because I can't change it and I'm not going to sit around and wallow about why it happened or play the victim about why it happened to me. In truth, this specific thing happens to two in every ten thousand people which makes me just one of thousands going through the same thing right now. And I'm a master overachiever so I've got this in the bag. Even if it means going to bed a little earlier so I have the energy to kick ass as needed the next day...
First a confession... I already knew what I had on my last blog post - probably why I was already at the anger stage. My insurance company has an online medical record and if you are smart like me you know that those tests your doctor orders are usually online long before you meet with that doctor to see what they showed. So, Tuesday I saw the pathology report with my diagnosis: Membranous Nephropathy. And of course I googled the shit out of it.
Bottom line: there is no cure. The membranes in my kidneys are enlarged and therefor don't work as well so I lose all my protein in my urine. But two thirds of the people diagnosed end up in remission so my chances are good. I met with my specialist on Thursday still a little sore and weak from the biopsy but having spent the better part of the week on my couch helped. She started me on several new meds and ordered additional tests including standing orders for them to be repeated every two weeks to monitor how well the new meds are working. So much for seeing the doctor and the lab less often, eh? Both meds are designed to treat the symptom of losing protein so I don't also end up with my kidney function declining. I left the doctor with the knowledge that I really had the answers I've been searching for (ROOT CAUSE!) and a plan of attack. I felt hopeful and happy.
And then Friday afternoon I started feeling crappy. At first I chalked it up to having taken a higher dose of my diuretic which my doc said I could try to see if the water retention would go down faster (I'm not a patient woman, remember!). I also read on the information sheet of one of the new meds that I had started that it was common to feel run down and yucky when first taking the med. (Am I the only person who actually reads that whole paper they send you home with from the pharmacy?) I logged off work for a nap to try and feel better about two o'clock that afternoon. My kidneys ached and I couldn't get comfortable and generally felt awful. Got very little sleep on Friday night and woke up Saturday morning no better.
Saturday morning an hour before I was supposed to leave for Big Sister's dance competition where I was looking at nine hours on the high school bleachers, I couldn't take a breath without excruciating pain in the abdomen which radiated up my back, through my chest and out my shoulder. The deeper the breath the worse the pain. I was faced with the hardest thing ever as an overachiever - the knowledge that no matter how much I wanted to power through whatever I had in my way I wasn't going to be able to do it all. I still hate to think about it! Here's something else you might not know about me: I hate asking for help. Of course it goes along with my overachiever tendencies because if I have to ask for help then I've made an irrefutable statement that I cannot do everything. So not okay with me and after all of these years of doing it all I am very, very set in my ways.
Luckily I have amazing friends who are also close neighbors. I called Mommy of Big Sister's BFF who is also one of my BFF's and a fellow dance mom since her older daughter is also on our competition team. She is like a force to be reckoned with in a crisis. As in I think that FEMA would be a great place for her in the event of a major disaster. Within minutes she had called Mommy of Baby Sister's BFF next door who came and took her away - in her pajamas - to spend the day with them. And she rushed over to grab Big Sister and all her gear for the competition whisking her away to do hair and makeup and be her surrogate mamma for the entire 9 house so Hubby could take me to the Emergency Room at our nearest hospital.
Five hours I spent in the ER. Five. Hours.
Basically I was one of the few lucky people who's kidney bleeds after the biopsy. The blood pooled under my diaphragm and created irritation both on the kidney and the diaphragm so every breath resulted in intense pain. Of course they ran a total blood work up to make sure there wasn't anything else going on plus a urinalysis which confirmed there was blood in my urine and therefor my kidney. Then my blood pressure was super duper low and wouldn't stablize so I had to stay a while longer - turns out I was a bit dehydrated. Gee, isn't that what one would expect when I'm on a powerful diuretic and have liquid restrictions? Sheesh. I got some great narcotics to knock me out and curb the pain while my body reabsorbed the blood my kidney leaked out because there was nothing else they could do. Most of Mother's Day weekend was a narcotic blur full of pain and suffering. Plus the emotional pain of having missed watching my daughter dance for the first time ever. Having to let go and accept that it doesn't make me a bad parent was difficult but her surrogate mom for the day brought me video and score sheets so in the end I didn't have to feel like I missed a thing.
This week has been much better. *knock on wood* My pain was gone by Tuesday and the novelty of taking a deep breath has returned. Each day on my treatment has me feeling better. I'm also using essential oils to treat the nausea side-effect of whichever med it is that causes that and to generally improve my mood. Hubby calls them my magic oils which might be accurate since they make me happy. I say "what does it hurt", right? I even spent twelve hours at Big Sister's dance competition yesterday like I hadn't been in the hospital a week ago. Go me!
I guess the visit to the hospital showed that overall I've been super lucky in this whole journey. I've never been hospitalized even when both my lungs were half blocked with blood clots. I can still work and play and care for my children even if my house is less than pristine most days because I don't have the energy for housecleaning on top of it all. And if I had to chose my kidney disease, I got the one I would have picked. The treatment is relatively benign, it is a slowly progressing disease where it would be decades before I need dialysis/transplant and my chances are higher of going into remission than progressively getting worse.
So yeah, I have kidney disease. But I'll be fine because I can't change it and I'm not going to sit around and wallow about why it happened or play the victim about why it happened to me. In truth, this specific thing happens to two in every ten thousand people which makes me just one of thousands going through the same thing right now. And I'm a master overachiever so I've got this in the bag. Even if it means going to bed a little earlier so I have the energy to kick ass as needed the next day...
Thursday, May 9, 2013
Biopsy week and a glance down memory lane
Two years ago I was preparing for my first ever Ragnar race that was a month away. I ran two of those bad boys that year and logged well over five hundred miles on my running shoes. I was the healthiest I've ever been in my entire life after deciding in 2008 that I was done being unhealthy and unhappy and transformed myself into a runner. I think that's why this whole ordeal has been so hard on me. I worked my ass off to be healthy and live a long life with my kids and my husband to end up two years later with kidney disease? That is bullshit. Fucking bullshit.
Monday I had my kidney biopsy. Afterwards, they handed me my instructions to go home with which I was awake enough to read through. To my surprise item number four read: "You may return to work in one week." What the hell? No one told me this shit was going to take me away from work for an entire week! Don't you think that is something you kind of need to tell people ahead of time so THEY CAN PREPARE? I was so pissed and I'm sure I scared the timid little nurse with my thunderous rage as she scurried out the door to get someone to talk to me. The compromise is working at home all week from my couch but only because I have one seriously amazing boss. Three days out from the procedure, I totally know why I needed this week off. I'm a slow-moving hot mess who is out of breath and has zero stamina. Is it time for my nap yet?
Today is what I have dubbed "Answer Day". I have an appointment with my specialist this afternoon to go over whatever it is that the biopsy showed and where we go from here. My one and only question for her will be: how do I get back to where I was two years ago where I can run every day and have energy to keep up with my kids? Because that's all I'm really interested in. This shit - whether it is curable or not - is not going to take the joy from my life. I may not get to choose whether I have kidney disease but I get to choose how I live with it! Wish me luck and workable news...
Monday I had my kidney biopsy. Afterwards, they handed me my instructions to go home with which I was awake enough to read through. To my surprise item number four read: "You may return to work in one week." What the hell? No one told me this shit was going to take me away from work for an entire week! Don't you think that is something you kind of need to tell people ahead of time so THEY CAN PREPARE? I was so pissed and I'm sure I scared the timid little nurse with my thunderous rage as she scurried out the door to get someone to talk to me. The compromise is working at home all week from my couch but only because I have one seriously amazing boss. Three days out from the procedure, I totally know why I needed this week off. I'm a slow-moving hot mess who is out of breath and has zero stamina. Is it time for my nap yet?
Today is what I have dubbed "Answer Day". I have an appointment with my specialist this afternoon to go over whatever it is that the biopsy showed and where we go from here. My one and only question for her will be: how do I get back to where I was two years ago where I can run every day and have energy to keep up with my kids? Because that's all I'm really interested in. This shit - whether it is curable or not - is not going to take the joy from my life. I may not get to choose whether I have kidney disease but I get to choose how I live with it! Wish me luck and workable news...
Wednesday, May 1, 2013
Clawing up from rock bottom
It can be said I've been through the wringer the last few months. No argument here. But nothing about the past five months had prepared me for what I faced the past few weeks. I am certain I hit rock bottom last week. Or at least I hope it was the very rock bottom. It's possible the Universe has yet another joke to pull, but I hope not!
I put on another ten pounds of water weight the week between my last visit with my doctor and meeting with my nephrologist (kidney specialist) last Monday. TEN pounds. In one week! Literally nothing but my yoga pants fit me and my face was so swollen it was impeding my vision. I was a water balloon stretched to the limits and could barely get through the minimal motions of yoga the morning of my appointment. My yoga instructor who is also a good friend must have been inspired because that morning she said "if you can sit and breath, you are doing yoga" which my poor psyche took great comfort in. I couldn't sleep because just having my legs touch each other was painful, all I wanted to do was sit on the couch - and eat of course since I'm an emotional eater - and I can say I now know what depression really feels like.
I walked into the nephrologists office hoping for a miracle and that somehow I would have relief that day. I went early to do paperwork, watched all the elderly patients walking in and out and wondered how I fit into this scene at all. When it was my turn I stepped on the scale, saw the HUGE new number, and then sat crying in the exam room waiting to meet my new doctor knowing it was probably not going to get fixed in a day with some magical new medication she could prescribe. The office was plastered with posters about advanced and chronic kidney diseases and all this treatment info. I'm certain it was meant to be helpful and informative but instead it was overwhelming.
When the doctor came in she asked a lot of questions and looked at all the labs and imaging I've had done but didn't know what was causing this thing with my kidneys. It was ironic how many of the questions about when symptoms had started could only be answered by framing them in terms of my fitness. For example, I only noticed the swelling in my legs when I could no longer sit in child's pose in yoga about a month ago. And my shortness of breath went away for a bit because I could run in January but soon came back and I haven't been able to run since February. At one point she looked at me and said "so, you are healthy". Um, yeah! Which is why this is so hard to deal with. She took a ton of blood for more testing and ordered a kidney biopsy so we will have some answers and know where to go for treatment. Best of all, she prescribed a new medication that I could start taking immediately to help with the water retention. And, she believes that whatever has caused my nephrotic syndrome is the cause of my blood clots in my lungs which means I've been dealing with this since sometime last fall and possibly even longer.
The relief of having at least one question answered was so great. Of course it doesn't address the question of what's going on with my kidneys but baby steps are okay for me here. The nephrotic syndrome, which causes the water retention, the blood clot and even the thyroid issues are all still symptoms of something else happening which is yet to be determined. Kind of like going deeper into the rabbit hole. The big bad things I used to fear - diabetes and heart disease - have been ruled out completely which makes me happy in some tiny way.
Speaking of relief... that new medication? It turns out she COULD give me a magical cure in the form of a pill that day! After one dose, I had dropped FIVE pounds the next morning. I have to monitor my blood pressure and my weight until I see her again because it might be too high or too low of a dose. So I know that I'm down almost twenty pounds of water weight just in the last week. I feel so much better it makes it seem like I've been cured. Of course there's still the kidney biopsy looming next week - a four hour procedure under general anesthesia - but that will give us definitive answers so I'm looking at it as a positive thing. And trying not to freak out about the procedure itself of course.
I have even more restrictions on what I can eat - and drink now, too! No salty foods, and no adding salt at the table to anything. And, I can only drink a total of two quarts of fluids each day. That includes all fluids. Coffee, breakfast shake, water, everything! Both of these have to do with the water retention so I'm more than happy to oblige although I am constantly thirsty now and would KILL to be able to hydrate normally. There's some more irony for me.... I'm a runner who can't run OR hydrate anymore. I'll be a hot mess and will probably have to start all over when I can run again. But, at least I didn't die, right?
At one point in the deepest darkest week of hell I got drunk on a Tuesday night at a neighbor's house. Not my finest hour but I was so beyond depressed that I didn't know how else to cope besides getting to where I didn't care for an hour or two. Of course I don't have that luxury anymore because I'd have to drink zero all day just to be able to drink enough to get a buzz but it was sure fun to escape while it lasted. At one point I woke up and had one of those moments that you read about - for a moment I was happy and everything was okay and then it hit me like a ton of bricks that I have kidney disease and my world shifted. I always thought it was a metaphor but that's exactly how it feels.
Luckily that deepest darkest week of hell is behind me and thanks to my better living through pharmaceuticals I feel like I'm slowly getting back to normal... again. Here's hoping that the biopsy next week does yield answers so a treatment plan can begin and get me really back to normal soon. I miss running so much that I dream about it occasionally. And I haven't given up hopes of being able to finish the half marathon I'm registered for in June, although I know it will be a lot of walking in between some running. Hubby and I looked across the kitchen at each other last night as we were both getting our maintenance medications out of our respective pill bottles and ruefully laughed. Both of us swore years ago that we were going to do everything possible to stay healthy so we didn't end up being one of "those people" with chronic conditions that required constant medication. Sometimes the Universe has a really sick sense of humor...
I put on another ten pounds of water weight the week between my last visit with my doctor and meeting with my nephrologist (kidney specialist) last Monday. TEN pounds. In one week! Literally nothing but my yoga pants fit me and my face was so swollen it was impeding my vision. I was a water balloon stretched to the limits and could barely get through the minimal motions of yoga the morning of my appointment. My yoga instructor who is also a good friend must have been inspired because that morning she said "if you can sit and breath, you are doing yoga" which my poor psyche took great comfort in. I couldn't sleep because just having my legs touch each other was painful, all I wanted to do was sit on the couch - and eat of course since I'm an emotional eater - and I can say I now know what depression really feels like.
I walked into the nephrologists office hoping for a miracle and that somehow I would have relief that day. I went early to do paperwork, watched all the elderly patients walking in and out and wondered how I fit into this scene at all. When it was my turn I stepped on the scale, saw the HUGE new number, and then sat crying in the exam room waiting to meet my new doctor knowing it was probably not going to get fixed in a day with some magical new medication she could prescribe. The office was plastered with posters about advanced and chronic kidney diseases and all this treatment info. I'm certain it was meant to be helpful and informative but instead it was overwhelming.
When the doctor came in she asked a lot of questions and looked at all the labs and imaging I've had done but didn't know what was causing this thing with my kidneys. It was ironic how many of the questions about when symptoms had started could only be answered by framing them in terms of my fitness. For example, I only noticed the swelling in my legs when I could no longer sit in child's pose in yoga about a month ago. And my shortness of breath went away for a bit because I could run in January but soon came back and I haven't been able to run since February. At one point she looked at me and said "so, you are healthy". Um, yeah! Which is why this is so hard to deal with. She took a ton of blood for more testing and ordered a kidney biopsy so we will have some answers and know where to go for treatment. Best of all, she prescribed a new medication that I could start taking immediately to help with the water retention. And, she believes that whatever has caused my nephrotic syndrome is the cause of my blood clots in my lungs which means I've been dealing with this since sometime last fall and possibly even longer.
The relief of having at least one question answered was so great. Of course it doesn't address the question of what's going on with my kidneys but baby steps are okay for me here. The nephrotic syndrome, which causes the water retention, the blood clot and even the thyroid issues are all still symptoms of something else happening which is yet to be determined. Kind of like going deeper into the rabbit hole. The big bad things I used to fear - diabetes and heart disease - have been ruled out completely which makes me happy in some tiny way.
Speaking of relief... that new medication? It turns out she COULD give me a magical cure in the form of a pill that day! After one dose, I had dropped FIVE pounds the next morning. I have to monitor my blood pressure and my weight until I see her again because it might be too high or too low of a dose. So I know that I'm down almost twenty pounds of water weight just in the last week. I feel so much better it makes it seem like I've been cured. Of course there's still the kidney biopsy looming next week - a four hour procedure under general anesthesia - but that will give us definitive answers so I'm looking at it as a positive thing. And trying not to freak out about the procedure itself of course.
I have even more restrictions on what I can eat - and drink now, too! No salty foods, and no adding salt at the table to anything. And, I can only drink a total of two quarts of fluids each day. That includes all fluids. Coffee, breakfast shake, water, everything! Both of these have to do with the water retention so I'm more than happy to oblige although I am constantly thirsty now and would KILL to be able to hydrate normally. There's some more irony for me.... I'm a runner who can't run OR hydrate anymore. I'll be a hot mess and will probably have to start all over when I can run again. But, at least I didn't die, right?
At one point in the deepest darkest week of hell I got drunk on a Tuesday night at a neighbor's house. Not my finest hour but I was so beyond depressed that I didn't know how else to cope besides getting to where I didn't care for an hour or two. Of course I don't have that luxury anymore because I'd have to drink zero all day just to be able to drink enough to get a buzz but it was sure fun to escape while it lasted. At one point I woke up and had one of those moments that you read about - for a moment I was happy and everything was okay and then it hit me like a ton of bricks that I have kidney disease and my world shifted. I always thought it was a metaphor but that's exactly how it feels.
Luckily that deepest darkest week of hell is behind me and thanks to my better living through pharmaceuticals I feel like I'm slowly getting back to normal... again. Here's hoping that the biopsy next week does yield answers so a treatment plan can begin and get me really back to normal soon. I miss running so much that I dream about it occasionally. And I haven't given up hopes of being able to finish the half marathon I'm registered for in June, although I know it will be a lot of walking in between some running. Hubby and I looked across the kitchen at each other last night as we were both getting our maintenance medications out of our respective pill bottles and ruefully laughed. Both of us swore years ago that we were going to do everything possible to stay healthy so we didn't end up being one of "those people" with chronic conditions that required constant medication. Sometimes the Universe has a really sick sense of humor...
Monday, April 15, 2013
When 'Fine' no longer applies
I've reached a place psychologically where I can honestly say I have never been before. When people ask the question 'How are you?' I can no longer respond with 'Fine'. Because I am not fine. No sir, not even close to fine. I've gone so far away from fine that I don't even know how to get back there from here. I hope it is just over the horizon and somehow within my grasp again soon but I'm not sure of that.
Okay, enough of the melodramatics...
My health has taken yet another turn. I thought a pulmonary embolism was the worst thing that could happen - aside from coronary artery disease. But, I was wrong. There I was last week, happily and without complaint following my coumadin regiment and getting my blood tested weekly to monitor my clotting levels, not eating my greens (or at least not cheating too much), not feeling like running yet but expecting it any day now. And I noticed something new. Well, okay, what I mean is that I could no longer ignore something new as insignificant. My legs from the knee down are swollen. And by swollen, think pitting edema (Google it, I dare you). They've been swelling since before Easter now that I think back to the tantrum I had that morning when my cute strappy-sandals from last summer wouldn't go on my swollen feet and I was feeling completely fat and bloated - but I chose to ignore it hoping it would go away. Some things never change I guess.
I mentioned it to the nurse while I was in getting my weekly blood draw and next thing you know I'm having more blood work and urinalysis. Guess what - there IS something else wrong. This time with my kidneys and my thyroid. I feel like I hit the big four-oh and immediately started falling apart. The thyroid thing is apparently unrelated (and hereditary, thanks Mom) but could contribute to why I have had very little energy and don't feel like the coumadin has kicked in as quickly this time around to getting me back on the treadmill/road. The kidney thing definitely is the reason I'm swelling up and retaining so much water. Thank goodness the female part of my psyche that keeps yelling FAT GIRL every time my pants feel tight the last couple of weeks can shut the hell up now. The fifteen pounds of extra weight I've put on the last three weeks is NOT because I'm unable to eat salad and veggies and can't breathe well enough to run yet. So there! *sticks tongue out*
But now I'm back to having more questions than there are answers. Plus more poking and prodding and testing trying to figure out exactly what IS going on with me. Can you say "high deductible met by April"? Say it with me...
Needless to say, I cling desperately to my weekly yoga sessions to reset my psyche. That overworked psyche that is trying her hardest to keep her chin up. The alternative is wallowing in self pity and self-induced panic about what the future holds which I've caught myself doing - very unlike me. I don't feel like myself, I don't look like myself, and some days I have little desire to be myself in this current unhealthy stage of the game. I've grown weary of all this crap and would kill for feeling good with all my energy back. It is a daily struggle to lift myself up and keep myself going. And my family is imploding because the force at the center that keeps it all a smoothly oiled machine is falling apart. But, it is what it is and at least I didn't die. (That's my mantra lately.) While it sucks right now and I'm not fine, I have high hopes that I will be soon.
Camp NaNoWriMo has turned into more shenanigans than writing but I'm still brainstorming and plot outlining whenever the inspiration hits me. Its like going to summer camp and doing the fun stuff like swimming and hanging out by the fire but skipping the hard stuff like cooking and cleaning up. It's enjoyable but it doesn't get everyone fed regularly. My writing can wait while I focus on getting healthy again. And that half marathon I've already paid for? Yeah, who knows if I can even walk 13 miles by June let alone run but I'm still hoping I can participate. We shall see...
If I'm a bit more sporadic on the blog, now you know why. In many ways "I've been better" has become my default where everything used to be "fine". Here's to there being nothing significantly or long-term wrong with me and to a quick recovery back to the land of the healthy! *fingers crossed*
Okay, enough of the melodramatics...
My health has taken yet another turn. I thought a pulmonary embolism was the worst thing that could happen - aside from coronary artery disease. But, I was wrong. There I was last week, happily and without complaint following my coumadin regiment and getting my blood tested weekly to monitor my clotting levels, not eating my greens (or at least not cheating too much), not feeling like running yet but expecting it any day now. And I noticed something new. Well, okay, what I mean is that I could no longer ignore something new as insignificant. My legs from the knee down are swollen. And by swollen, think pitting edema (Google it, I dare you). They've been swelling since before Easter now that I think back to the tantrum I had that morning when my cute strappy-sandals from last summer wouldn't go on my swollen feet and I was feeling completely fat and bloated - but I chose to ignore it hoping it would go away. Some things never change I guess.
I mentioned it to the nurse while I was in getting my weekly blood draw and next thing you know I'm having more blood work and urinalysis. Guess what - there IS something else wrong. This time with my kidneys and my thyroid. I feel like I hit the big four-oh and immediately started falling apart. The thyroid thing is apparently unrelated (and hereditary, thanks Mom) but could contribute to why I have had very little energy and don't feel like the coumadin has kicked in as quickly this time around to getting me back on the treadmill/road. The kidney thing definitely is the reason I'm swelling up and retaining so much water. Thank goodness the female part of my psyche that keeps yelling FAT GIRL every time my pants feel tight the last couple of weeks can shut the hell up now. The fifteen pounds of extra weight I've put on the last three weeks is NOT because I'm unable to eat salad and veggies and can't breathe well enough to run yet. So there! *sticks tongue out*
But now I'm back to having more questions than there are answers. Plus more poking and prodding and testing trying to figure out exactly what IS going on with me. Can you say "high deductible met by April"? Say it with me...
Needless to say, I cling desperately to my weekly yoga sessions to reset my psyche. That overworked psyche that is trying her hardest to keep her chin up. The alternative is wallowing in self pity and self-induced panic about what the future holds which I've caught myself doing - very unlike me. I don't feel like myself, I don't look like myself, and some days I have little desire to be myself in this current unhealthy stage of the game. I've grown weary of all this crap and would kill for feeling good with all my energy back. It is a daily struggle to lift myself up and keep myself going. And my family is imploding because the force at the center that keeps it all a smoothly oiled machine is falling apart. But, it is what it is and at least I didn't die. (That's my mantra lately.) While it sucks right now and I'm not fine, I have high hopes that I will be soon.
Camp NaNoWriMo has turned into more shenanigans than writing but I'm still brainstorming and plot outlining whenever the inspiration hits me. Its like going to summer camp and doing the fun stuff like swimming and hanging out by the fire but skipping the hard stuff like cooking and cleaning up. It's enjoyable but it doesn't get everyone fed regularly. My writing can wait while I focus on getting healthy again. And that half marathon I've already paid for? Yeah, who knows if I can even walk 13 miles by June let alone run but I'm still hoping I can participate. We shall see...
If I'm a bit more sporadic on the blog, now you know why. In many ways "I've been better" has become my default where everything used to be "fine". Here's to there being nothing significantly or long-term wrong with me and to a quick recovery back to the land of the healthy! *fingers crossed*
Tuesday, April 2, 2013
A new project for Camp NaNoWriMo
I've got a new project I'm working on. A new novel. And how lovely of the folks who run the NaNoWriMo website to offer the same online tracking and motivational tools and shenanigans of November in April to help me bang out the rough draft quickly this month. They call it Camp NaNoWriMo, I call it brilliant.
Wait, what? You want to know what happened with my first novel? I'm getting ahead of myself? Sorry... let me explain.
Last time I talked about my writing I was anxiously awaiting critique from my writer's group on the first draft of my first novel and stressing that they weren't going to like what I'd written. Well, turns out they all loved it and wanted to jump in and make it better and polished and pretty enough for submission and hopefully publication. And while I want that someday as well, I decided that wasn't the novel to do it with for several reasons.
First, it's my first novel. There's a reason the majority of first novels never get published - they are learning curve victims left to die along the path to becoming a seasoned author. Of course there are famous (and not so famous) exceptions like Harry Potter (and Twilight). And I truly believe that if a new author wants to write and re-write a first novel until it is just as good as a second or a third, it is possible to learn enough on your first idea to make it happen. My good friend has done that and is well on her way to publication. I also know she has most definitely written that book more than once.
Second, I'm lazy and I want the learning return with smaller investment up front. My first book (working title "Natural Balance") is a fantasy. And after all the time it took me to finish the first draft I still don't have a fully fleshed out world built and there are still holes in my magic system. My goal is to someday be published which means I need to learn how to write a first draft and then how to edit that rough draft into something people want to read. So, I've figured out my process of completing a rough draft. But do I really want to learn how to edit using an idea that I'd honestly bitten off more than I could chew? Not so much.
Third, I've learned that I am not going to write fantasy for a living. While I love reading it, it just isn't the genre niche that I'm going to be great at writing in. Another argument for not editing this one in hopes of publication. Say I worked my ass off for the next months or years and did sell this book. Then I'd (hopefully) have fans who'd want to keep reading my work because they loved my fantasy novel. And I'd have no other fantasy to give them? It was my baby, my first real idea for a book that panned out into a plot but the fact that all the subsequent ideas I've had are NOT fantasy is something I need to fully acknowledge. Perhaps someday I can pull my baby out ofa drawer an abandoned flash drive and publish it under my well established name and hope some of the same people like this completely different piece of work. But I'll never build a career out of one fantasy novel.
So, I'm going to practice my new-found skills of completing a rough draft by starting and finishing another idea. One that doesn't require me to invent an entirely different world with culture and religion and magic different than ours. This new idea is mainstream fiction set in the world I live in and know everything about. All I have to do is develop some great characters who have tragic and exciting events happen to them that keep the pages turning. That's the novel I'll learn how to edit with.
And where I go from there, I don't even know yet. There's a chance there's still pieces of this writing thing I still don't even know I need to learn before I'm successful. We shall see! In the meantime, my goal is 30,000 words and a fully fleshed out rough draft/outline by the end of April. Wish me luck!
Wait, what? You want to know what happened with my first novel? I'm getting ahead of myself? Sorry... let me explain.
Last time I talked about my writing I was anxiously awaiting critique from my writer's group on the first draft of my first novel and stressing that they weren't going to like what I'd written. Well, turns out they all loved it and wanted to jump in and make it better and polished and pretty enough for submission and hopefully publication. And while I want that someday as well, I decided that wasn't the novel to do it with for several reasons.
First, it's my first novel. There's a reason the majority of first novels never get published - they are learning curve victims left to die along the path to becoming a seasoned author. Of course there are famous (and not so famous) exceptions like Harry Potter (and Twilight). And I truly believe that if a new author wants to write and re-write a first novel until it is just as good as a second or a third, it is possible to learn enough on your first idea to make it happen. My good friend has done that and is well on her way to publication. I also know she has most definitely written that book more than once.
Second, I'm lazy and I want the learning return with smaller investment up front. My first book (working title "Natural Balance") is a fantasy. And after all the time it took me to finish the first draft I still don't have a fully fleshed out world built and there are still holes in my magic system. My goal is to someday be published which means I need to learn how to write a first draft and then how to edit that rough draft into something people want to read. So, I've figured out my process of completing a rough draft. But do I really want to learn how to edit using an idea that I'd honestly bitten off more than I could chew? Not so much.
Third, I've learned that I am not going to write fantasy for a living. While I love reading it, it just isn't the genre niche that I'm going to be great at writing in. Another argument for not editing this one in hopes of publication. Say I worked my ass off for the next months or years and did sell this book. Then I'd (hopefully) have fans who'd want to keep reading my work because they loved my fantasy novel. And I'd have no other fantasy to give them? It was my baby, my first real idea for a book that panned out into a plot but the fact that all the subsequent ideas I've had are NOT fantasy is something I need to fully acknowledge. Perhaps someday I can pull my baby out of
So, I'm going to practice my new-found skills of completing a rough draft by starting and finishing another idea. One that doesn't require me to invent an entirely different world with culture and religion and magic different than ours. This new idea is mainstream fiction set in the world I live in and know everything about. All I have to do is develop some great characters who have tragic and exciting events happen to them that keep the pages turning. That's the novel I'll learn how to edit with.
And where I go from there, I don't even know yet. There's a chance there's still pieces of this writing thing I still don't even know I need to learn before I'm successful. We shall see! In the meantime, my goal is 30,000 words and a fully fleshed out rough draft/outline by the end of April. Wish me luck!
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