June 30, 2009
I just can't help but wonder what the future holds. I think I'm doing a really good job of living in the moment these days, without getting myself all worked up about what I should be doing. I just don't worry any more about if I'm doing the right thing with my life or not. It sounds all cliche, I know, but it really isn't what I'm doing so much as how I'm doing it that I'm concerned with any more. So long as I know that I am living a life full of love, that's all that really matters to me. (Sappy right? I know, gag me with a spoon as we used to say. Smile.)
Okay, I take that back. Or at least maybe I should clarify a little. I'm not anxious about my future any more. I still think about it. I definitely dream about it. In fact, I have a very solid picture in my mind of what I want for my future, and my present for that matter. I feel like I have more direction now than I have ever had. I used to talk with my sister-in-law Heather about feeling lost because I didn't have some thing that I was passionate about the way Jeremy was with music. I just hadn't found it. While I loved writing and had the hopes of one day writing a book, I had said to a few people over the years, "I just don't have anything important enough to write about yet."
But now I feel like I do. And the desire to use writing to share with other people and possibly even help them through tough times is so exciting to me I can hardly stand it! The encouragement and feedback I've gotten from so many people about my blog has gone a long way to fuel that fire too. With a sincere heart I want to thank you. I'm continuing to see how the love and good will of others is manifesting itself and its energy in me and my life. It's an amazing thing. I hope you can feel it too.
Tuesday, June 30, 2009
Monday, June 29, 2009
Nothing's coming
June 29, 2009
I've sat down to blog several times the last couple of days, but nothing's coming to me. Quite honestly, I've been a little sick of hearing my own voice. So I decided I'm not going to force it if it's not there. And it's so funny, because usually when this happens to me a day or two later something significant happens that I just feel like I have to write about. You don't have to preach to me on the virtues of patience. Smile.
I've sat down to blog several times the last couple of days, but nothing's coming to me. Quite honestly, I've been a little sick of hearing my own voice. So I decided I'm not going to force it if it's not there. And it's so funny, because usually when this happens to me a day or two later something significant happens that I just feel like I have to write about. You don't have to preach to me on the virtues of patience. Smile.
Saturday, June 27, 2009
Frasier and Niles
June 27, 2009
I enjoyed the deliciousness of falling asleep last night without planning my slumber. I was tired. Jeremy and I were stretched out on the couches watching Frasier on DVD, and I felt the sleepiness curl up with me. I have a bedtime routine that I usually follow in order to ensure proper treatment of my ulcerative colitis. The routine includes doing my nightly enema and taking my sleeping meds now. But last night, I decided to just enjoy the relaxation I was feeling and I drifted off.
Around 11:45 p.m. I woke up on the couch and realized that I hadn't yet done my enema and I needed to, so I crept in the bedroom, careful not to wake Jeremy, and proceeded to medicate myself (aren't I being delicate?). Of course, after doing the enema, you can imagine that falling back to sleep did not come so easy. And so I lay awake in bed, alone with my thoughts. And this is where they took me:
I thought about all the thinking I've been doing about faith lately. And why, really does any of it matter? Would I be living my life any differently if I understood why it's necessary to have evil in the world in order to have good? And then I started thinking about my Psychology of Religion class I took my freshman year (I'm pretty sure it was my freshman year). Actually there were two classes I started thinking about: Psychology of Religion and Christianity 101. Both of those classes taught theory about faith. That was the first time I was introduced to there actually being theories about faith. And in both of those classes, they talked about the "born again" Christian faith as a theory.
I was thoroughly confused. I'm embarrassed to admit it now, because it just shows how naive or sheltered or something that I was, but I found myself feeling almost angry at the professors for talking about the faith I had been raised with like it was a theory. I remember trying to point out to the professor that what he meant to say was this one was the truth. And he kept answering me with explaining that it was a theory. It may have been a theory I believed in, but it was still a theory nonetheless.
So last night as I laid there trying to fight the urge to go to the bathroom and rid myself of the enema I had just used, I started thinking, As a child, did I feel like I had a choice? I don't think I did. The gospel was presented to me as the truth. And of course it would be, right? Don't most parents present their beliefs to their children as the truth? As a parent you want your child to follow what you believe. Of course.
The choice that I remember having the evening I said a prayer and asked Jesus into my heart was the choice of heaven or hell, not the choice of Christianity or some other faith. And last night I wondered, isn't freedom and choosing Christ an essential part of the faith? It wasn't till I was 17 that I even started understanding what the choices out there were.
I could remember pretty clearly the evening I "accepted Christ." I remember parts of the conversations that I had with my parents that evening. And last night I wondered, what were they thinking and feeling about their little daughter saying that prayer? I'm sure they were excited. What conversations did they have with each other afterward?
I realized that I was not going to be able to fall back asleep if I continued to think these thoughts, and my opportunity for night-time slumber was slipping away from me with each passing minute. So I went back to the living room to find that Jeremy had woken up and turned Frasier back on. I settled into my spot on the couch and fell back asleep, Frasier and Niles distracting my mind.
I'm sure I'll be pondering these thoughts for many nights to come . . .
I enjoyed the deliciousness of falling asleep last night without planning my slumber. I was tired. Jeremy and I were stretched out on the couches watching Frasier on DVD, and I felt the sleepiness curl up with me. I have a bedtime routine that I usually follow in order to ensure proper treatment of my ulcerative colitis. The routine includes doing my nightly enema and taking my sleeping meds now. But last night, I decided to just enjoy the relaxation I was feeling and I drifted off.
Around 11:45 p.m. I woke up on the couch and realized that I hadn't yet done my enema and I needed to, so I crept in the bedroom, careful not to wake Jeremy, and proceeded to medicate myself (aren't I being delicate?). Of course, after doing the enema, you can imagine that falling back to sleep did not come so easy. And so I lay awake in bed, alone with my thoughts. And this is where they took me:
I thought about all the thinking I've been doing about faith lately. And why, really does any of it matter? Would I be living my life any differently if I understood why it's necessary to have evil in the world in order to have good? And then I started thinking about my Psychology of Religion class I took my freshman year (I'm pretty sure it was my freshman year). Actually there were two classes I started thinking about: Psychology of Religion and Christianity 101. Both of those classes taught theory about faith. That was the first time I was introduced to there actually being theories about faith. And in both of those classes, they talked about the "born again" Christian faith as a theory.
I was thoroughly confused. I'm embarrassed to admit it now, because it just shows how naive or sheltered or something that I was, but I found myself feeling almost angry at the professors for talking about the faith I had been raised with like it was a theory. I remember trying to point out to the professor that what he meant to say was this one was the truth. And he kept answering me with explaining that it was a theory. It may have been a theory I believed in, but it was still a theory nonetheless.
So last night as I laid there trying to fight the urge to go to the bathroom and rid myself of the enema I had just used, I started thinking, As a child, did I feel like I had a choice? I don't think I did. The gospel was presented to me as the truth. And of course it would be, right? Don't most parents present their beliefs to their children as the truth? As a parent you want your child to follow what you believe. Of course.
The choice that I remember having the evening I said a prayer and asked Jesus into my heart was the choice of heaven or hell, not the choice of Christianity or some other faith. And last night I wondered, isn't freedom and choosing Christ an essential part of the faith? It wasn't till I was 17 that I even started understanding what the choices out there were.
I could remember pretty clearly the evening I "accepted Christ." I remember parts of the conversations that I had with my parents that evening. And last night I wondered, what were they thinking and feeling about their little daughter saying that prayer? I'm sure they were excited. What conversations did they have with each other afterward?
I realized that I was not going to be able to fall back asleep if I continued to think these thoughts, and my opportunity for night-time slumber was slipping away from me with each passing minute. So I went back to the living room to find that Jeremy had woken up and turned Frasier back on. I settled into my spot on the couch and fell back asleep, Frasier and Niles distracting my mind.
I'm sure I'll be pondering these thoughts for many nights to come . . .
Thursday, June 25, 2009
Wailing at me
June 25, 2009
Bob was wailing at me this morning, "No woman no cry!" Boy did that song take me back. But first, a little background. (Stay with me here. I'm gonna jump around a little).
When I was a little girl, I was given a pair of white roller skates for my birthday or Christmas, or some such special occasion. They came up over my ankles, the kind that looked like ice skates. And I'll tell you what, I LIVED in those roller skates. I remember my mom laying down the law, "Abby, you cannot roller skate in the house."
"But I can in the basement, right?" I asked, desperate to claim that smooth area of cement for my own. Yes, the basement was allowed. Whew.
Outside the world was mine when I was in my roller skates. Tremble (our family dog who was named Tremble because she was trembling the night we got her) would be lassoed into my shenanigans and have to pull me with the blue mesh leash up and down the street we lived on. I wore the skates to the park at the church up the street. I wore them when I was on the swings. I would pump my legs till I was swinging as high as I could get and then at the peak I would jump off my swing and see how far I would roll.
We played a game at the park called Over My Dead Body (I know, strange). We climbed up the grassy hill at the back of the church parking lot and those of us who were wearing our roller skates would say, "Over my dead body!" and then proceeded to skate down the bumpy, grassy hill with all the speed we could muster. It was a rush! It was a thrill! Oh how I loved those roller skates!
But often during the day as is wont to happen, nature would call. (Didn't you just hate it when nature interrupted a good run of playing?) I knew I had to follow the rules, but I did not want to take off my roller skates just to use the bathroom. So I would get down on my hands and knees and crawl through the house to the bathroom, sure to hold my feet up off the ground behind me so I wasn't scuffing the floor at all. I would stand up just to plop down on the toilet, forgetting that the roller skates gave me extra height and that the toilet seat was further down than I was anticipating.
This was how much I loved my roller skates.
So fast forward to college. I think it was my freshman year at Bethel. The school had rented out a roller rink and we were all going. I could hardly contain my excitement. I hadn't been skating in years, but it all came back to me. If you have rollerskating in your soul, you know what I'm talking about. I didn't want to take any breaks while I was out there. Forget the blister that was forming on the inside of the leg I leaned on as I turned the corners. Bob Marley was singing "No Woman No Cry," and I cruised around the rink. My legs were strong. The weight of the skates was nothing to me. It was just that added friction that I pushed out from under me with each swift movement. I felt like I was floating as I glided smoothly around and around in circles, turning in little circles or to skate backwards from time to time (oh yeah, I was that good!).
Fast forward again to this morning and Bob wailing the same song at me again. It's one of those powerful song/memory connections. I was right back there with my Bethel friends, cruising the rink. Oh my gosh! That feeling! That feeling is what I dream about. All those dreams of flying, and gliding, and lifting my arms open to feel the speed full on!
(Now stay with me here. I don't mean to be jerking you around, but it is all connected, I promise.) In December I was hospitalized because my ostomy bags had been leaking so much that the skin around my stoma had gotten infected. To say I was at my wits end then would be an understatement. I was seriously to the point that if they couldn't help me, I didn't know if there was any other alternative but to kill myself. It wasn't that I wanted to die, but the pain was so bad, the situation so horrible, and I was so helpless, I didn't know what else I could do.
So I sat in the hospital bed, afraid to move because it seemed every time I did the makeshift seal we had managed to come up with for my ostomy bag would break free from my skin and I would spring a leak, which basically turned into stomach acid running down the open sore on my stomach. Dr. T had just signed on to be the new colo-rectal surgeon that very week. She came in with Dr. V to see me. It was a month sooner than they normally did the ostomy takedowns, but she was willing to do it on me then because of the problems I had been having (there were more problems than just the skin infection at the time; problems with dehydration, my PIC line getting infected, etc.) and because the barium x-ray they had done of my j-pouch showed it had already healed really well.
Kelly was our ostomy nurse at the time. She was so helpful. Prior to my hospitalization she was taking phone calls and e-mails from us at all hours, trying to help us figure out what to do about all the leakages. She met with Jeremy and I numerous times on the fly to try to help us figure out if we were doing something wrong or to try something different. She came into my hospital room to check on me. She told Jeremy and I that there was this convex type of ostomy "appliance" that had a rubber belt that you wore with it to hold the bag more securely in place that might work for me. She was doing her best to get one for me. And then we found out Dr. T was going to do the surgery on me in just a couple of days, so all of this frustration with the ostomy and stoma would no longer be an issue. I would be free of my "appliance!" (Oh sweet relief. Seriously. You have no idea . . .)
Kelly started telling us how she and her husband had just been rollerskating and how they had so much fun doing it. She made Jeremy and I promise that we would go rollerskating when I got better. We promised. Hmmm . . .maybe I need to remind Jeremy of that promise now.
And then this morning I listened to Bob tell me not to worry about a thing because every little thing was going to be alright. Well of course it is! And he told me about three little birds. I smiled to myself. When I was pregnant with Harper, I had a dream that there were three hummingbirds in my womb. Oh sweet Harper. My little bird.
Thanks for the good morning Bob. You can wail at me any time.
Bob was wailing at me this morning, "No woman no cry!" Boy did that song take me back. But first, a little background. (Stay with me here. I'm gonna jump around a little).
When I was a little girl, I was given a pair of white roller skates for my birthday or Christmas, or some such special occasion. They came up over my ankles, the kind that looked like ice skates. And I'll tell you what, I LIVED in those roller skates. I remember my mom laying down the law, "Abby, you cannot roller skate in the house."
"But I can in the basement, right?" I asked, desperate to claim that smooth area of cement for my own. Yes, the basement was allowed. Whew.
Outside the world was mine when I was in my roller skates. Tremble (our family dog who was named Tremble because she was trembling the night we got her) would be lassoed into my shenanigans and have to pull me with the blue mesh leash up and down the street we lived on. I wore the skates to the park at the church up the street. I wore them when I was on the swings. I would pump my legs till I was swinging as high as I could get and then at the peak I would jump off my swing and see how far I would roll.
We played a game at the park called Over My Dead Body (I know, strange). We climbed up the grassy hill at the back of the church parking lot and those of us who were wearing our roller skates would say, "Over my dead body!" and then proceeded to skate down the bumpy, grassy hill with all the speed we could muster. It was a rush! It was a thrill! Oh how I loved those roller skates!
But often during the day as is wont to happen, nature would call. (Didn't you just hate it when nature interrupted a good run of playing?) I knew I had to follow the rules, but I did not want to take off my roller skates just to use the bathroom. So I would get down on my hands and knees and crawl through the house to the bathroom, sure to hold my feet up off the ground behind me so I wasn't scuffing the floor at all. I would stand up just to plop down on the toilet, forgetting that the roller skates gave me extra height and that the toilet seat was further down than I was anticipating.
This was how much I loved my roller skates.
So fast forward to college. I think it was my freshman year at Bethel. The school had rented out a roller rink and we were all going. I could hardly contain my excitement. I hadn't been skating in years, but it all came back to me. If you have rollerskating in your soul, you know what I'm talking about. I didn't want to take any breaks while I was out there. Forget the blister that was forming on the inside of the leg I leaned on as I turned the corners. Bob Marley was singing "No Woman No Cry," and I cruised around the rink. My legs were strong. The weight of the skates was nothing to me. It was just that added friction that I pushed out from under me with each swift movement. I felt like I was floating as I glided smoothly around and around in circles, turning in little circles or to skate backwards from time to time (oh yeah, I was that good!).
Fast forward again to this morning and Bob wailing the same song at me again. It's one of those powerful song/memory connections. I was right back there with my Bethel friends, cruising the rink. Oh my gosh! That feeling! That feeling is what I dream about. All those dreams of flying, and gliding, and lifting my arms open to feel the speed full on!
(Now stay with me here. I don't mean to be jerking you around, but it is all connected, I promise.) In December I was hospitalized because my ostomy bags had been leaking so much that the skin around my stoma had gotten infected. To say I was at my wits end then would be an understatement. I was seriously to the point that if they couldn't help me, I didn't know if there was any other alternative but to kill myself. It wasn't that I wanted to die, but the pain was so bad, the situation so horrible, and I was so helpless, I didn't know what else I could do.
So I sat in the hospital bed, afraid to move because it seemed every time I did the makeshift seal we had managed to come up with for my ostomy bag would break free from my skin and I would spring a leak, which basically turned into stomach acid running down the open sore on my stomach. Dr. T had just signed on to be the new colo-rectal surgeon that very week. She came in with Dr. V to see me. It was a month sooner than they normally did the ostomy takedowns, but she was willing to do it on me then because of the problems I had been having (there were more problems than just the skin infection at the time; problems with dehydration, my PIC line getting infected, etc.) and because the barium x-ray they had done of my j-pouch showed it had already healed really well.
Kelly was our ostomy nurse at the time. She was so helpful. Prior to my hospitalization she was taking phone calls and e-mails from us at all hours, trying to help us figure out what to do about all the leakages. She met with Jeremy and I numerous times on the fly to try to help us figure out if we were doing something wrong or to try something different. She came into my hospital room to check on me. She told Jeremy and I that there was this convex type of ostomy "appliance" that had a rubber belt that you wore with it to hold the bag more securely in place that might work for me. She was doing her best to get one for me. And then we found out Dr. T was going to do the surgery on me in just a couple of days, so all of this frustration with the ostomy and stoma would no longer be an issue. I would be free of my "appliance!" (Oh sweet relief. Seriously. You have no idea . . .)
Kelly started telling us how she and her husband had just been rollerskating and how they had so much fun doing it. She made Jeremy and I promise that we would go rollerskating when I got better. We promised. Hmmm . . .maybe I need to remind Jeremy of that promise now.
And then this morning I listened to Bob tell me not to worry about a thing because every little thing was going to be alright. Well of course it is! And he told me about three little birds. I smiled to myself. When I was pregnant with Harper, I had a dream that there were three hummingbirds in my womb. Oh sweet Harper. My little bird.
Thanks for the good morning Bob. You can wail at me any time.
Wednesday, June 24, 2009
Ob-La-Di
June 24, 2009
They sat at a school-cafeteria table, the two of them, faces from my past. There were four huge pizzas in front of them; the stone-oven baked kind with air pockets bubbling up on the edges of the dusty crust, giant pieces of pepperoni on a couple of them. I sat down across the table from them. They looked at each other with mischievous, excited grins on their faces. "Should we tell her why I'm eating so much now?" the one asked the other. "I'm pregnant!" she said as she stood up and showed me how big she had gotten. I smiled.
"Oh I'm so happy for you. That is such exciting news." I was there with them both emotionally. I really was. I was happy with them, without faking it.
But then she started talking. She showed me the soft pink yarn that she was using to make tiny little baby booties for the little girl growing inside her. And I started sobbing. "No! I can't listen to this! I can't!" I didn't even try to explain my outburst. I didn't know if they knew what I had been through, and I didn't care. I just needed to get out of there, so I took off. Someone will just have to explain it to them, I thought.
As I was remembering it all Paul was singing "Ob-La-Di, Ob-La-Da."
Yeah Paul, it does go on. And Jeremy and Abby jones . . .
They sat at a school-cafeteria table, the two of them, faces from my past. There were four huge pizzas in front of them; the stone-oven baked kind with air pockets bubbling up on the edges of the dusty crust, giant pieces of pepperoni on a couple of them. I sat down across the table from them. They looked at each other with mischievous, excited grins on their faces. "Should we tell her why I'm eating so much now?" the one asked the other. "I'm pregnant!" she said as she stood up and showed me how big she had gotten. I smiled.
"Oh I'm so happy for you. That is such exciting news." I was there with them both emotionally. I really was. I was happy with them, without faking it.
But then she started talking. She showed me the soft pink yarn that she was using to make tiny little baby booties for the little girl growing inside her. And I started sobbing. "No! I can't listen to this! I can't!" I didn't even try to explain my outburst. I didn't know if they knew what I had been through, and I didn't care. I just needed to get out of there, so I took off. Someone will just have to explain it to them, I thought.
As I was remembering it all Paul was singing "Ob-La-Di, Ob-La-Da."
Yeah Paul, it does go on. And Jeremy and Abby jones . . .
Monday, June 22, 2009
From grrrrr . . . to gratitude
June 22, 2009
This morning I woke up and started my day with a cup of coffee and a side of guilt. There are these thoughts that will pop into my head from time to time; "You were willing to give up on Harper several times," and they cause me a little bit of emotional distress. It has become my custom then to go through the mental exercise of showing compassion on myself by having a friendly internal dialogue about all the situations and choices I made. Somewhere in there, "It's just not fair!" is yelled a time or two. Lately, I manage to make it through this mental obstacle course pretty quickly and without scrapping my emotional knees too much. And furthermore, I'm not beating myself up for going through this process either. Guilt is actually a normal part of the grieving process. And it's a part that I'm learning to navigate my way through pretty well I think.
But the negativity of the morning's thought world stuck with me after that too. It seemed that there were negative conversations, e-mails, whatever, all around me. I kept telling myself that I did not have to be a part of this yuck. And I didn't, and I don't. But how do you get yourself out? How do you stop noticing all the stuff that makes you go "grrrrr . . ?" It just becomes a cycle - you know what I mean? And why is it that that cycle is just so much easier to fall into on a Monday? Poor Mondays. They just have a rough spot to begin with, don't they?
So my friend Alicia stopped by to chat with me this afternoon and it was so helpful. We talked about how to get un-stuck emotionally on days like today. And I think the key is to turn toward gratitude. How can you help but feel good when you are intentionally noticing all the good things happening to you, around you, for you? You can't!! (At least I can't.)
And so, to help finish my day off strong, here is my gratitude list, specifically for and about today, but in no particular order:
*I am thankful that Django can make me laugh with the simple act of climbing into the tub after I've showered so he can lick the soapy water off the bottom of the tub. I'm even thankful for the big brown paw marks he left. They made me smile. (I would include a picture of the paw prints here, but I don't want you to see how dirty my tub is!! I am not my mother's daughter when it comes to that!)
*I am thankful for e-mail that makes it so easy to drop a note instantly to my mom and get a little momma-love in return from her.
*I am thankful for caffeine. I know, sounds pathetic, but it's true.
*I am thankful that I am strong enough to lift my arms above my head and wash my hair when I shower in the morning.
*I am thankful that I'm married.
*I'm thankful that I can be stupid and make people laugh.
*I'm thankful that my sister took the time to make a mix CD for me months ago that I'm still listening to and enjoying today.
This morning I woke up and started my day with a cup of coffee and a side of guilt. There are these thoughts that will pop into my head from time to time; "You were willing to give up on Harper several times," and they cause me a little bit of emotional distress. It has become my custom then to go through the mental exercise of showing compassion on myself by having a friendly internal dialogue about all the situations and choices I made. Somewhere in there, "It's just not fair!" is yelled a time or two. Lately, I manage to make it through this mental obstacle course pretty quickly and without scrapping my emotional knees too much. And furthermore, I'm not beating myself up for going through this process either. Guilt is actually a normal part of the grieving process. And it's a part that I'm learning to navigate my way through pretty well I think.
But the negativity of the morning's thought world stuck with me after that too. It seemed that there were negative conversations, e-mails, whatever, all around me. I kept telling myself that I did not have to be a part of this yuck. And I didn't, and I don't. But how do you get yourself out? How do you stop noticing all the stuff that makes you go "grrrrr . . ?" It just becomes a cycle - you know what I mean? And why is it that that cycle is just so much easier to fall into on a Monday? Poor Mondays. They just have a rough spot to begin with, don't they?
So my friend Alicia stopped by to chat with me this afternoon and it was so helpful. We talked about how to get un-stuck emotionally on days like today. And I think the key is to turn toward gratitude. How can you help but feel good when you are intentionally noticing all the good things happening to you, around you, for you? You can't!! (At least I can't.)
And so, to help finish my day off strong, here is my gratitude list, specifically for and about today, but in no particular order:
*I am thankful that Django can make me laugh with the simple act of climbing into the tub after I've showered so he can lick the soapy water off the bottom of the tub. I'm even thankful for the big brown paw marks he left. They made me smile. (I would include a picture of the paw prints here, but I don't want you to see how dirty my tub is!! I am not my mother's daughter when it comes to that!)
*I am thankful for e-mail that makes it so easy to drop a note instantly to my mom and get a little momma-love in return from her.
*I am thankful for caffeine. I know, sounds pathetic, but it's true.
*I am thankful that I am strong enough to lift my arms above my head and wash my hair when I shower in the morning.
*I am thankful that I'm married.
*I'm thankful that I can be stupid and make people laugh.
*I'm thankful that my sister took the time to make a mix CD for me months ago that I'm still listening to and enjoying today.
Sunday, June 21, 2009
Sorting through the symptoms
June 21, 2009
I had a dilation on Friday. Dr. T had another doctor in there with her, I don't really remember what she was - teacher, resident - ?? Anyway, it's always strange for me to hear doctors filling in other doctors about my history. Dr. T was explaining my hospitalization last year to the doctor, "And then her colon became toxic," which stuck in my head on Friday.
I remember certain parts of the dilation, but other parts I don't remember at all. I do remember seeing my insides up on the TV screen as Dr. T scoped me. "The opening to your pouch looks really good Abby. I've never seen it this good before." She hardly had to dilate me at all. Which was confusing for me, until she commented on my rectum. "Your rectum is pretty inflamed though." I asked if my rectum being inflamed (which is another way of saying the ulcerative colitis is flaring there again) could make it difficult for me to pass stool too. She said it could. Ahh, that explains it.
So there are possibly some good results of this. You see, the symptoms that I experience when my UC flares are very similar to the symptoms I experience when I have pouchitis. I am taking Cipro for the pouchitis, and I do nightly enemas for the UC. So maybe what I thought was happening when I tried to decrease the Cipro was really just a UC flare. Maybe I will be able to go off the Cipro after all. (Which in turn means maybe pregnancy is a possibility if that's what we decide we want.)
So why the UC flare? The enemas had been helping treat the diseased part of my rectum. Here's one theory I have. I had been taking meds to help me sleep at night. Usually I'd fall asleep around 9:30 p.m. and the meds would help me stay asleep until around 3 a.m., at which time I'd get up and have to go to the bathroom. I do my enemas (or rectal suspension medication) right as I go to bed. Well, a while back I realized I didn't really need my sleeping meds to help me fall asleep any more, so I stopped taking them. I was able to fall asleep just fine, but I was getting up more frequently in the night, which means that I wasn't able to hold the medication in as long. So last night I started taking the sleeping medication again, hoping that it will help me sleep longer (not just fall asleep) so I can hold the medication in longer and maybe cool down this flare a little. Also, I might try doing the enemas twice a day (which my doctor had originally prescribed, but it's kind of hard to hold in when I'm up and moving around. Hard, but not impossible).
All in all I think it was good news because the surgery Dr. T is saying I will need (that I don't yet believe I will need) is due to me needing the dilations, which apparently I didn't really need this week. That's awesome! The rest of the issues I can deal with and am figuring out. It'll just take some time.
I don't know if it was the conscious sedation drugs, or the beginning of a migraine, or that I was trying to stop taking my anti-depression meds (or maybe it was a mixture of all three), but I got really nauseous Friday afternoon and evening. I kept a bucket beside me, worried that I was going to throw up. In the past when I have felt that way I've done whatever I could just to throw up and be done with it, but now with worrying about dehydration and all, I fought it. And I won!! I didn't end up tossing my cookies. I was so relieved. All I needed was some good sleep to take care of the problem.
I had a dilation on Friday. Dr. T had another doctor in there with her, I don't really remember what she was - teacher, resident - ?? Anyway, it's always strange for me to hear doctors filling in other doctors about my history. Dr. T was explaining my hospitalization last year to the doctor, "And then her colon became toxic," which stuck in my head on Friday.
I remember certain parts of the dilation, but other parts I don't remember at all. I do remember seeing my insides up on the TV screen as Dr. T scoped me. "The opening to your pouch looks really good Abby. I've never seen it this good before." She hardly had to dilate me at all. Which was confusing for me, until she commented on my rectum. "Your rectum is pretty inflamed though." I asked if my rectum being inflamed (which is another way of saying the ulcerative colitis is flaring there again) could make it difficult for me to pass stool too. She said it could. Ahh, that explains it.
So there are possibly some good results of this. You see, the symptoms that I experience when my UC flares are very similar to the symptoms I experience when I have pouchitis. I am taking Cipro for the pouchitis, and I do nightly enemas for the UC. So maybe what I thought was happening when I tried to decrease the Cipro was really just a UC flare. Maybe I will be able to go off the Cipro after all. (Which in turn means maybe pregnancy is a possibility if that's what we decide we want.)
So why the UC flare? The enemas had been helping treat the diseased part of my rectum. Here's one theory I have. I had been taking meds to help me sleep at night. Usually I'd fall asleep around 9:30 p.m. and the meds would help me stay asleep until around 3 a.m., at which time I'd get up and have to go to the bathroom. I do my enemas (or rectal suspension medication) right as I go to bed. Well, a while back I realized I didn't really need my sleeping meds to help me fall asleep any more, so I stopped taking them. I was able to fall asleep just fine, but I was getting up more frequently in the night, which means that I wasn't able to hold the medication in as long. So last night I started taking the sleeping medication again, hoping that it will help me sleep longer (not just fall asleep) so I can hold the medication in longer and maybe cool down this flare a little. Also, I might try doing the enemas twice a day (which my doctor had originally prescribed, but it's kind of hard to hold in when I'm up and moving around. Hard, but not impossible).
All in all I think it was good news because the surgery Dr. T is saying I will need (that I don't yet believe I will need) is due to me needing the dilations, which apparently I didn't really need this week. That's awesome! The rest of the issues I can deal with and am figuring out. It'll just take some time.
I don't know if it was the conscious sedation drugs, or the beginning of a migraine, or that I was trying to stop taking my anti-depression meds (or maybe it was a mixture of all three), but I got really nauseous Friday afternoon and evening. I kept a bucket beside me, worried that I was going to throw up. In the past when I have felt that way I've done whatever I could just to throw up and be done with it, but now with worrying about dehydration and all, I fought it. And I won!! I didn't end up tossing my cookies. I was so relieved. All I needed was some good sleep to take care of the problem.
Friday, June 19, 2009
Life's soundtrack
written on June 19, 2009 (Happy Juneteenth!)
I woke up very early this morning, not from desire, but due to biology I guess. I decided to go for a walk shortly after the sun came up (or tried to come up). The sky was kind of grumpy, getting ready for monsoons, but just not quite there yet. It was not a serious power walk. It was an I'm-drinking-my-coffee-from-my-all-too-cool-Fender-travel-coffee-cup-as-I- walk-briskly-and-listen-to-my-"Mellowdies"-CD-mix-I-made-in-2001 kind of walk. Anyway . . .
In the early morning hours when I decided to get out of bed because laying there awake was doing me no good (3:20 a.m.), I decided to hop on Facebook and kill some time. My nephew, Kellen, had tagged me in a picture taken in March of 2008 when he and my niece Ashley came to visit us. The photo was of Jeremy, Ashley and me as we walked to a spring training baseball game in the rain. I was pregnant and I was sick, but I did not yet know why I was sick nor how sick I was. The photo was taken one week before I ended up in the hospital.
My chest tightened when I saw the picture. "Oh, Harper was with us," was all I could think. You couldn't really tell from the picture that I was pregnant, but at that time I was around four months pregnant. So as I started out on my walk this morning, I was thinking of Harper. And then the song, She Was the One by Peter Holsapple started playing:
She was the one
how could I tell?
I took a guess
she did the rest
even before I started dreaming
I knew her well
she was the one
she was the one
the one I'd been waiting for
to open the floodgate doors
just to drown on the loving floor
but it was too much too soon
to shoot for the moon
when you're coming from the sun
she was the one
and she was the last to know
that I would suck in for the long haul
cause I know a good thing when I see one
lord, and she appeared to be one
she was the one
dark as in thunder
deep as in my sleep
smart like a whip
and shoots from the hip
a glance at the past and what it foretells
oh I knew her well
she was the one
she turned me up ten
time and again
and when she was done
go back to one
even before I started drinking
I knew her well
she was the one
and she was the last to know
that I would suck it in for the long haul
cause I know a good thing when i see one
lord and she appeared to me one
she was the one
she was the one
I should have known
cause when she left
she took all the fun
leaving me dreams
leaving me just one
oh i should have known
she was the one
she was the one
I walked down the street to the park that's about a half a mile from our house. I wasn't sad listening to the song. I was breathing deep the breath of God as I walked, smiling and satisfied. Every dog along the way cracked me up; the little chihuahuas that think they are so fierce barking and protecting their yards, not knowing I could drop kick them without breaking my pace; the two adolescent pink nosed pit bulls that didn't know yet they were supposed to scare me. They all made me laugh. (Apparently ignorance is bliss.)
I got to the park and looked down at my shoes. We bought my pink, slip-on, New Balance shoes when I was home healing from my second surgery. Jeremy would drive us to the park because I couldn't yet walk the half mile to get there. We would walk short little jaunts from bench to bench at the park. I would sit and get up enough strength to walk to the next bench. I remembered when I was finally able to walk a full loop on the path and Jeremy told me he was impressed. (There are two things in this life that will forever make me happy. One is making Jeremy laugh. The other is impressing him.) Then I flashed back even further to me at the same park, running loop after loop after loop as I trained for the Chicago marathon. The place, so close to home, holds memories. And I smiled. Satisfied. Breathing deeply.
Then Over the Rhine's Latter Days:
What a beautiful piece of heartache,
this has all turned out to be.
Lord knows we've learned the hard way,
all about healthy apathy.
And I use these words pretty loosely.
There's so much more to life than words.
There is a me you would not recognize there.
Call it the shadow of myself.
And if the music starts before I get there,
dance without me.
You dance so gracefully.
I really think I'll be okay.
They've taken their toll these latter days.
Nothing like sleeping on a bed of nails.
Nothing much here but our broken dreams.
Ah, but baby if all else fails,
nothing is ever quite what it seems.
And I'm dying inside to leave you
with more than just cliche.
There is a me you would not recognize there.
Call it the shadow of myself.
And if the music starts
before I get there.
Dance without me.
You dance so gracefully.
I really think I'll be okay.
They've taken their toll these latter days.
They've taken their toll these latter days.
Tell them it's real.
Tell them it's really real.
I just don't have much left to say.
They've taken their toll these latter days.
And I smiled again. Yes, I am full of smiles these days. I smiled because they have taken their toll, but I'm on the other side. I'm dancing now.
And then Shawn Colvin and Mary Chapin Carpenter, One Cool Remove:
One cool remove. One cool remove. And forever let me stay one cool remove away.
One cool remove from the things that hurt me, from the sea, the city.
I see it all in a passion play, one cool remove away.
Yeah, I'm one cool remove away now. One cool remove.
I woke up very early this morning, not from desire, but due to biology I guess. I decided to go for a walk shortly after the sun came up (or tried to come up). The sky was kind of grumpy, getting ready for monsoons, but just not quite there yet. It was not a serious power walk. It was an I'm-drinking-my-coffee-from-my-all-too-cool-Fender-travel-coffee-cup-as-I- walk-briskly-and-listen-to-my-"Mellowdies"-CD-mix-I-made-in-2001 kind of walk. Anyway . . .
In the early morning hours when I decided to get out of bed because laying there awake was doing me no good (3:20 a.m.), I decided to hop on Facebook and kill some time. My nephew, Kellen, had tagged me in a picture taken in March of 2008 when he and my niece Ashley came to visit us. The photo was of Jeremy, Ashley and me as we walked to a spring training baseball game in the rain. I was pregnant and I was sick, but I did not yet know why I was sick nor how sick I was. The photo was taken one week before I ended up in the hospital.
My chest tightened when I saw the picture. "Oh, Harper was with us," was all I could think. You couldn't really tell from the picture that I was pregnant, but at that time I was around four months pregnant. So as I started out on my walk this morning, I was thinking of Harper. And then the song, She Was the One by Peter Holsapple started playing:
She was the one
how could I tell?
I took a guess
she did the rest
even before I started dreaming
I knew her well
she was the one
she was the one
the one I'd been waiting for
to open the floodgate doors
just to drown on the loving floor
but it was too much too soon
to shoot for the moon
when you're coming from the sun
she was the one
and she was the last to know
that I would suck in for the long haul
cause I know a good thing when I see one
lord, and she appeared to be one
she was the one
dark as in thunder
deep as in my sleep
smart like a whip
and shoots from the hip
a glance at the past and what it foretells
oh I knew her well
she was the one
she turned me up ten
time and again
and when she was done
go back to one
even before I started drinking
I knew her well
she was the one
and she was the last to know
that I would suck it in for the long haul
cause I know a good thing when i see one
lord and she appeared to me one
she was the one
she was the one
I should have known
cause when she left
she took all the fun
leaving me dreams
leaving me just one
oh i should have known
she was the one
she was the one
I walked down the street to the park that's about a half a mile from our house. I wasn't sad listening to the song. I was breathing deep the breath of God as I walked, smiling and satisfied. Every dog along the way cracked me up; the little chihuahuas that think they are so fierce barking and protecting their yards, not knowing I could drop kick them without breaking my pace; the two adolescent pink nosed pit bulls that didn't know yet they were supposed to scare me. They all made me laugh. (Apparently ignorance is bliss.)
I got to the park and looked down at my shoes. We bought my pink, slip-on, New Balance shoes when I was home healing from my second surgery. Jeremy would drive us to the park because I couldn't yet walk the half mile to get there. We would walk short little jaunts from bench to bench at the park. I would sit and get up enough strength to walk to the next bench. I remembered when I was finally able to walk a full loop on the path and Jeremy told me he was impressed. (There are two things in this life that will forever make me happy. One is making Jeremy laugh. The other is impressing him.) Then I flashed back even further to me at the same park, running loop after loop after loop as I trained for the Chicago marathon. The place, so close to home, holds memories. And I smiled. Satisfied. Breathing deeply.
Then Over the Rhine's Latter Days:
What a beautiful piece of heartache,
this has all turned out to be.
Lord knows we've learned the hard way,
all about healthy apathy.
And I use these words pretty loosely.
There's so much more to life than words.
There is a me you would not recognize there.
Call it the shadow of myself.
And if the music starts before I get there,
dance without me.
You dance so gracefully.
I really think I'll be okay.
They've taken their toll these latter days.
Nothing like sleeping on a bed of nails.
Nothing much here but our broken dreams.
Ah, but baby if all else fails,
nothing is ever quite what it seems.
And I'm dying inside to leave you
with more than just cliche.
There is a me you would not recognize there.
Call it the shadow of myself.
And if the music starts
before I get there.
Dance without me.
You dance so gracefully.
I really think I'll be okay.
They've taken their toll these latter days.
They've taken their toll these latter days.
Tell them it's real.
Tell them it's really real.
I just don't have much left to say.
They've taken their toll these latter days.
And I smiled again. Yes, I am full of smiles these days. I smiled because they have taken their toll, but I'm on the other side. I'm dancing now.
And then Shawn Colvin and Mary Chapin Carpenter, One Cool Remove:
One cool remove. One cool remove. And forever let me stay one cool remove away.
One cool remove from the things that hurt me, from the sea, the city.
I see it all in a passion play, one cool remove away.
Yeah, I'm one cool remove away now. One cool remove.
Thursday, June 18, 2009
Nietzsche had it right
June 18, 2009
What is going on with me?! Seriously, the amount of joy I'm feeling these days is unbelievable. I have never, never experienced feelings like this before. I actually had to double check the symptoms for mania just to make sure there wasn't something happening to me biologically that I wasn't on top of. But no - I'm not clinically manic (at least to the extent that one is actually able to diagnose oneself - smile).
I went for a walk when I got home from work and took the mix CD my sister recently made for me. There's a song on there, More Time by needtobreathe. I put it on repeat and listened to the song my whole walk. I actually started sobbing at one point, from joy.
I promise you the world again
And everything within my hands
All the riches one could dream
They will come from me
Oh God, really? Are you blessing me with this goodness? Finally? All that pain. All the fear and the tears and the heartache and the, oh, the gut wrenching. My cup is overflowing with joy. Is this heaven? And it's all here. Right here in my heart. I get it now. I really do.
There is nothing to fear. NOTHING. I know. The very core of me knows. There is nothing to be afraid of Abby. Live fearless. The worst moments in this life - the worst that I could imagine, that I experienced, there was nothing but deep, deep peace in me. If death was coming, I was okay with that - I was at peace. If the rest of it, the rest of all the pain and yuck brings forth the joy that I'm feeling now, then what is there to be afraid of? What is there to fear if that's the bottom line, the worst that there could be? Nothing!
And this moment as I'm writing, tears are flowing. I'm shaking from the sobs, but they are the most welcomed tears and sobs I have ever experienced. I'm almost desperate to share this feeling with other people. Do you understand? Do you know? I can hardly contain my excitement.
Nietzsche had it right, that which does not kill us makes us stronger, but I would add it also makes us more joyful!
What is going on with me?! Seriously, the amount of joy I'm feeling these days is unbelievable. I have never, never experienced feelings like this before. I actually had to double check the symptoms for mania just to make sure there wasn't something happening to me biologically that I wasn't on top of. But no - I'm not clinically manic (at least to the extent that one is actually able to diagnose oneself - smile).
I went for a walk when I got home from work and took the mix CD my sister recently made for me. There's a song on there, More Time by needtobreathe. I put it on repeat and listened to the song my whole walk. I actually started sobbing at one point, from joy.
I promise you the world again
And everything within my hands
All the riches one could dream
They will come from me
Oh God, really? Are you blessing me with this goodness? Finally? All that pain. All the fear and the tears and the heartache and the, oh, the gut wrenching. My cup is overflowing with joy. Is this heaven? And it's all here. Right here in my heart. I get it now. I really do.
There is nothing to fear. NOTHING. I know. The very core of me knows. There is nothing to be afraid of Abby. Live fearless. The worst moments in this life - the worst that I could imagine, that I experienced, there was nothing but deep, deep peace in me. If death was coming, I was okay with that - I was at peace. If the rest of it, the rest of all the pain and yuck brings forth the joy that I'm feeling now, then what is there to be afraid of? What is there to fear if that's the bottom line, the worst that there could be? Nothing!
And this moment as I'm writing, tears are flowing. I'm shaking from the sobs, but they are the most welcomed tears and sobs I have ever experienced. I'm almost desperate to share this feeling with other people. Do you understand? Do you know? I can hardly contain my excitement.
Nietzsche had it right, that which does not kill us makes us stronger, but I would add it also makes us more joyful!
Wednesday, June 17, 2009
One short skirt
June 17, 2009
As part of my job, I co-teach a class for couples who are going through the courts because they are divorcing/splitting and they have children. The class talks about the legal process, grief and loss for both adults and children, how to deal with conflict, how to develop a parenting plan, etc. etc. We have around 4000 people a year go through our classes. I don't teach all of them. The staff rotate teaching responsibilities. The classes have anywhere from 20-65 people in them. This morning I taught one of the smaller classes.
This morning was actually a tiny, little milestone for me. I wore a dress today that came above my knees. I know, I know, it's really not that big of a deal, but it's a little bit of a big deal to me. If you've read my blog, you know that I've struggled with some of the physical effects my illness has had on my body. And one of the big ones for me has been the stretch marks that came after I gained 100 pounds of fluid weight while in the hospital in a matter of a few weeks. I just don't have the pretty legs that I used to have. There are scars and stretches all along the inside of my legs, all the way down to the tops of my feet.
But today my attitude is, "big deal." These scarred up legs get me where I need to go (that sounds a little like a corny country song to me). So I took a major step in the direction of freedom from shame and wore a dress that I love, but that also happens to be above my knees. Not only that, I stood in front of a roomful of people for close to four hours while they no doubt analyzed everything about me (as we are wont to do when we are bored and are being lectured at). But you know what? No one pointed at my legs and giggled. No one raised their hand and asked what happened to me. In fact, I didn't even notice any gazes lingering below my hemline. But I was prepared. I braced myself. And now I think, "What wasted energy?!"
And so with relief and humor I say, "One short skirt for my legs, one giant leap for my spirit!" You can quote me on that.
As part of my job, I co-teach a class for couples who are going through the courts because they are divorcing/splitting and they have children. The class talks about the legal process, grief and loss for both adults and children, how to deal with conflict, how to develop a parenting plan, etc. etc. We have around 4000 people a year go through our classes. I don't teach all of them. The staff rotate teaching responsibilities. The classes have anywhere from 20-65 people in them. This morning I taught one of the smaller classes.
This morning was actually a tiny, little milestone for me. I wore a dress today that came above my knees. I know, I know, it's really not that big of a deal, but it's a little bit of a big deal to me. If you've read my blog, you know that I've struggled with some of the physical effects my illness has had on my body. And one of the big ones for me has been the stretch marks that came after I gained 100 pounds of fluid weight while in the hospital in a matter of a few weeks. I just don't have the pretty legs that I used to have. There are scars and stretches all along the inside of my legs, all the way down to the tops of my feet.
But today my attitude is, "big deal." These scarred up legs get me where I need to go (that sounds a little like a corny country song to me). So I took a major step in the direction of freedom from shame and wore a dress that I love, but that also happens to be above my knees. Not only that, I stood in front of a roomful of people for close to four hours while they no doubt analyzed everything about me (as we are wont to do when we are bored and are being lectured at). But you know what? No one pointed at my legs and giggled. No one raised their hand and asked what happened to me. In fact, I didn't even notice any gazes lingering below my hemline. But I was prepared. I braced myself. And now I think, "What wasted energy?!"
And so with relief and humor I say, "One short skirt for my legs, one giant leap for my spirit!" You can quote me on that.
Tuesday, June 16, 2009
Yippee-skippy
June 16, 2009 (Second Post)
Don't cry Abby. Don't cry. Don't cry. I tried to tell myself that this morning after a trip to the bathroom. I could tell the stricture had closed up on the opening of my j-pouch. And it happened so suddenly. How could I tell, you ask? When I was having a bowel movement everything was coming out in a stream like it was going through an opening smaller than a straw. Damn it!
You're only having this intense emotional reaction Abby because you were using all or nothing thinking. You had been telling yourself you were healed; this was all over. Just because you need another dilation doesn't mean things aren't getting better (pardon the double negative). This doesn't mean you're going to have to have another surgery and live with an ostomy again. Take it one step at a time.
I know, I did a lot of talking to myself today. So, as the story goes, I've got a dilation scheduled for Friday afternoon. Yippee-skippy. Ugh.
Don't cry Abby. Don't cry. Don't cry. I tried to tell myself that this morning after a trip to the bathroom. I could tell the stricture had closed up on the opening of my j-pouch. And it happened so suddenly. How could I tell, you ask? When I was having a bowel movement everything was coming out in a stream like it was going through an opening smaller than a straw. Damn it!
You're only having this intense emotional reaction Abby because you were using all or nothing thinking. You had been telling yourself you were healed; this was all over. Just because you need another dilation doesn't mean things aren't getting better (pardon the double negative). This doesn't mean you're going to have to have another surgery and live with an ostomy again. Take it one step at a time.
I know, I did a lot of talking to myself today. So, as the story goes, I've got a dilation scheduled for Friday afternoon. Yippee-skippy. Ugh.
The cat's out of the bag!!
June 16, 2009
Well, the cat's out of the bag! And I have to say, without sounding like I'm bragging here, I have some of the best friends in the world!! Last week I went to lunch with my dear friend Mayday, and she let me in on the surprise she (and others) had been coordinating. For those of you who weren't in on the surprise, friends and family generously chipped in to send Jeremy and I on a weekend getaway.
As with many of my friends and family, Mayday has been there for me every step of the way in my recovery and healing. She has listened to me talk about the intimate details of my grief. And at one point along the way, she really heard me when I was talking about Jeremy and my relationship; how our world seemed consumed with doctors' appointments and fear, how we had lost touch with the "us" we used to be. She heard me talk about our hopes to one day just get away from it all. And apparently that set the wheels in motion.
So, unbeknownst to me, she started planning. She had mentioned to me a few weeks back that she was planning this surprise, but was a little stuck in knowing just what the right thing for us would be and when a good time would be for us to do it. And at that time I thought the surprise was that she would book a couple of nights for us at a hotel in the city of our choice. I thought to myself, "Well, we could probably afford to do a road trip to San Diego, and I know La Pension is pretty inexpensive to stay at. We could go to the beach for free." I was super excited, but I had no idea that the generosity of friends and family would allow us to do so much more!
Last week she told me the total amount she had collected. I was floored. I teared up and, yes, I think Mayday would agree, I was speechless. And now, after talking with Jeremy and planning the trip, I am excited beyond words!!!
So here's what the trip will consist of: On the morning of July 24th Jeremy and I will fly to San Francisco and will take a shuttle from the airport to the Villa Florence (a beautiful hotel my mom and I stayed at in Union Square about 10 years ago at the direction of Bryce Baker - a friend who is a travel agent in MN) where we will stay for the weekend. On Saturday, we will go on a wine tasting tour of Napa Valley. We'll visit four different vineyards, lunch included! The end of the tour consists of a ferry ride across the bay with up close and personal views of the Golden Gate Bridge. We'll fly home on Sunday evening. There will be plenty of time Friday and Sunday to explore the city and eat some good food. ALL OF THIS IS COVERED BY THE GIFT OF OUR FRIENDS AND FAMILY!
So, I am once again humbled (and excited) by the kindness and generosity of the people in our lives. This is just what Jeremy and I need, and honestly, it has come at the perfect time. It has come at a time when I feel well enough to actually enjoy it. At a time when fear is no longer the main emotion ruling our lives. At a time when Jeremy and I are able to focus on each other and not my illness. So, from the bottom of my heart, thank you.
I don't yet know the details of everyone who contributed to this gift for us, so a more specific thank you will absolutely be coming. I do know that people have been generous with Jeremy and I every step of the way. You wouldn't believe it if I told you. During my hospitalization, multiple people gave us thousands of dollars to help pay our mortgage and other bills. Family members paid for plane tickets (multiple times) and gave of their precious time to come and help out during my total of 12 weeks in the hospital. Many friends helped take care of Django (feeding, letting him out, spending time with him) so Jeremy could stay with me at the hospital during the times that I just couldn't be alone. Friends made food for Jeremy during that time (and believe me - anything other than hospital food was greatly appreciated!). We were flooded with cards and e-mails and good wishes. I could go on and on . . .
As I was thinking about all of this on my way home from work yesterday, I was energized by the goodness of others. I was inspired to help other people out when they are in a tough spot because I know how uplifting and really energizing kindness can be for those who give and for those who receive. It's just a beautiful thing. And as I said to Mayday, it is heartwarming to see that "people are good."
Well, the cat's out of the bag! And I have to say, without sounding like I'm bragging here, I have some of the best friends in the world!! Last week I went to lunch with my dear friend Mayday, and she let me in on the surprise she (and others) had been coordinating. For those of you who weren't in on the surprise, friends and family generously chipped in to send Jeremy and I on a weekend getaway.
As with many of my friends and family, Mayday has been there for me every step of the way in my recovery and healing. She has listened to me talk about the intimate details of my grief. And at one point along the way, she really heard me when I was talking about Jeremy and my relationship; how our world seemed consumed with doctors' appointments and fear, how we had lost touch with the "us" we used to be. She heard me talk about our hopes to one day just get away from it all. And apparently that set the wheels in motion.
So, unbeknownst to me, she started planning. She had mentioned to me a few weeks back that she was planning this surprise, but was a little stuck in knowing just what the right thing for us would be and when a good time would be for us to do it. And at that time I thought the surprise was that she would book a couple of nights for us at a hotel in the city of our choice. I thought to myself, "Well, we could probably afford to do a road trip to San Diego, and I know La Pension is pretty inexpensive to stay at. We could go to the beach for free." I was super excited, but I had no idea that the generosity of friends and family would allow us to do so much more!
Last week she told me the total amount she had collected. I was floored. I teared up and, yes, I think Mayday would agree, I was speechless. And now, after talking with Jeremy and planning the trip, I am excited beyond words!!!
So here's what the trip will consist of: On the morning of July 24th Jeremy and I will fly to San Francisco and will take a shuttle from the airport to the Villa Florence (a beautiful hotel my mom and I stayed at in Union Square about 10 years ago at the direction of Bryce Baker - a friend who is a travel agent in MN) where we will stay for the weekend. On Saturday, we will go on a wine tasting tour of Napa Valley. We'll visit four different vineyards, lunch included! The end of the tour consists of a ferry ride across the bay with up close and personal views of the Golden Gate Bridge. We'll fly home on Sunday evening. There will be plenty of time Friday and Sunday to explore the city and eat some good food. ALL OF THIS IS COVERED BY THE GIFT OF OUR FRIENDS AND FAMILY!
So, I am once again humbled (and excited) by the kindness and generosity of the people in our lives. This is just what Jeremy and I need, and honestly, it has come at the perfect time. It has come at a time when I feel well enough to actually enjoy it. At a time when fear is no longer the main emotion ruling our lives. At a time when Jeremy and I are able to focus on each other and not my illness. So, from the bottom of my heart, thank you.
I don't yet know the details of everyone who contributed to this gift for us, so a more specific thank you will absolutely be coming. I do know that people have been generous with Jeremy and I every step of the way. You wouldn't believe it if I told you. During my hospitalization, multiple people gave us thousands of dollars to help pay our mortgage and other bills. Family members paid for plane tickets (multiple times) and gave of their precious time to come and help out during my total of 12 weeks in the hospital. Many friends helped take care of Django (feeding, letting him out, spending time with him) so Jeremy could stay with me at the hospital during the times that I just couldn't be alone. Friends made food for Jeremy during that time (and believe me - anything other than hospital food was greatly appreciated!). We were flooded with cards and e-mails and good wishes. I could go on and on . . .
As I was thinking about all of this on my way home from work yesterday, I was energized by the goodness of others. I was inspired to help other people out when they are in a tough spot because I know how uplifting and really energizing kindness can be for those who give and for those who receive. It's just a beautiful thing. And as I said to Mayday, it is heartwarming to see that "people are good."
Sunday, June 14, 2009
That says it all
June 14, 2009
After meeting with Dr. G a couple of weeks ago, I decided I would try to decrease the amount of Cipro I was taking to see what would happen. He had said that an ideal amount for long-term use would be about 250 mg/day. I was taking 1000 mg/day. Dr. T was the one who prescribed it for me, so it wasn't that Dr. G was changing her prescription, he was just answering some questions we had about long term antibiotic use. I've been on 1000 mg of Cipro for about four months now I think, maybe longer. Anyway, about a week ago I went down to 500 mg/day with the hopes of decreasing it even more if it went well.
It hasn't gone well. The first couple of days down at 500 mg I noticed I was getting up in the night two or three times instead of once to go to the bathroom. I shrugged it off, thinking maybe it was something else going on. But that continued throughout the week, and then this weekend I started feeling even more crappy. I've been going to the bathroom more frequently, it burns when I go, it's watery, and then today my pelvic pain started getting worse. I'm no doctor, but that to me means that even at 500 mg/day my pouchitis flares. I just can't keep going like that. I feel a little more run down. I'm sure I'm at a higher risk of dehydration too with me having watery BMs so frequently. So today I went back up to the 1000 mg.
Big deal, right? I mean, if the meds are taking care of the problem, why worry? And Dr. G reassured me that if I get some strain of a bug that is resistant to the Cipro, there are other antibiotics to take. I know fellow j-pouchers who have taken Cipro non-stop for years. I don't need to freak out about this. But there is a greater significance here for me. One that hasn't really sunk in yet.
When we met with Dr. K (my new OB/GYN) about a month ago, she said that Cipro is too powerful of a drug to take during the first trimester of pregnancy. Cipro is the only drug that keeps my pouchitis at bay. And there is no way I could go through a pregnancy suffering from pouchitis. Even thinking about just going through the first three months with it makes me want to cry. Maybe I'm just too much of a wimp. Maybe I could tough it out. But I can't think that having a mother who had a bacterial infection going on would be healthy for a growing baby anyway.
So I don't know if I'm just totally okay with that, or if the significance of it just hasn't sunk in yet. I do know that my thought life the past few weeks has not been focusing on being pregnant or having a baby. So maybe I'm okay with it.
Jeremy and I were out running errands today and he was playing ELO. I don't know if it was because I wasn't feeling 100% physically that my mind was primed to go to memories of being in the hospital or what, but I was immediately back in my hospital room at UMC. Jeremy often played ELO for me through the TV's DVD player in my room in the mornings. As I was having this "flashback," it was is if I was standing in the hospital room watching myself. I could see myself, big and bloated, barely able to walk. I could see myself holding on to the handrail in the shower, barely able to balance myself, let alone stand for long because I was so weak, but I held on as long as I could nonetheless because the water felt so good on my aching body.
I saw myself looking into the mirror at my puffy face, sunken, lifeless eyes, and thinning greasy hair. I watched as I brushed my teeth, worrying that my teeth were going to fall out on me because I was so malnourished. I could smell the hospital issued all-in-one shampoo/body wash. I could feel the fresh, clean hospital gown against my skin. But more than all that, I could feel the emotional state I was in. This totally-on-the-verge-of- sobbing-all-the-time feeling, but still trying so hard to be positive. ELO helped me. Doesn't that sound corny? But it did. Listening to that music helped me get into a positive mood.
I sat on the edge of my bed, working hard to keep my balance. Our routine was for Jeremy to put lotion on my legs and feet after I showered. I couldn't reach myself. We were given Aquafor to help the places where my skin was splitting from being so swollen, like behind my knees. He put the Aquafor on the water blisters that had formed on my feet from standing just those few moments too. And those were usually the best moments of my day.
Listening to ELO I wanted to cry. "Isn't my body amazing Jeremy?" I looked over at him driving the car. "Yeah. It really is," he responded. He knew what I was saying. I think he knew where my thoughts were too.
"It was just over a year ago and I could hardly walk I was so weak. Now look at me! I'm healthy and strong," I said as I jokingly flexed my arm muscles for him to see. He reached over and felt the muscles (no doubt impressed). I laughed, "Except don't look at the scars on my arm from where the PIC line was." That made me laugh. But really, now, that's an image that will also be stuck in my mind - my bicep muscle flexed, with the scars from where my PIC line was, just barely visible. That says it all.
After meeting with Dr. G a couple of weeks ago, I decided I would try to decrease the amount of Cipro I was taking to see what would happen. He had said that an ideal amount for long-term use would be about 250 mg/day. I was taking 1000 mg/day. Dr. T was the one who prescribed it for me, so it wasn't that Dr. G was changing her prescription, he was just answering some questions we had about long term antibiotic use. I've been on 1000 mg of Cipro for about four months now I think, maybe longer. Anyway, about a week ago I went down to 500 mg/day with the hopes of decreasing it even more if it went well.
It hasn't gone well. The first couple of days down at 500 mg I noticed I was getting up in the night two or three times instead of once to go to the bathroom. I shrugged it off, thinking maybe it was something else going on. But that continued throughout the week, and then this weekend I started feeling even more crappy. I've been going to the bathroom more frequently, it burns when I go, it's watery, and then today my pelvic pain started getting worse. I'm no doctor, but that to me means that even at 500 mg/day my pouchitis flares. I just can't keep going like that. I feel a little more run down. I'm sure I'm at a higher risk of dehydration too with me having watery BMs so frequently. So today I went back up to the 1000 mg.
Big deal, right? I mean, if the meds are taking care of the problem, why worry? And Dr. G reassured me that if I get some strain of a bug that is resistant to the Cipro, there are other antibiotics to take. I know fellow j-pouchers who have taken Cipro non-stop for years. I don't need to freak out about this. But there is a greater significance here for me. One that hasn't really sunk in yet.
When we met with Dr. K (my new OB/GYN) about a month ago, she said that Cipro is too powerful of a drug to take during the first trimester of pregnancy. Cipro is the only drug that keeps my pouchitis at bay. And there is no way I could go through a pregnancy suffering from pouchitis. Even thinking about just going through the first three months with it makes me want to cry. Maybe I'm just too much of a wimp. Maybe I could tough it out. But I can't think that having a mother who had a bacterial infection going on would be healthy for a growing baby anyway.
So I don't know if I'm just totally okay with that, or if the significance of it just hasn't sunk in yet. I do know that my thought life the past few weeks has not been focusing on being pregnant or having a baby. So maybe I'm okay with it.
Jeremy and I were out running errands today and he was playing ELO. I don't know if it was because I wasn't feeling 100% physically that my mind was primed to go to memories of being in the hospital or what, but I was immediately back in my hospital room at UMC. Jeremy often played ELO for me through the TV's DVD player in my room in the mornings. As I was having this "flashback," it was is if I was standing in the hospital room watching myself. I could see myself, big and bloated, barely able to walk. I could see myself holding on to the handrail in the shower, barely able to balance myself, let alone stand for long because I was so weak, but I held on as long as I could nonetheless because the water felt so good on my aching body.
I saw myself looking into the mirror at my puffy face, sunken, lifeless eyes, and thinning greasy hair. I watched as I brushed my teeth, worrying that my teeth were going to fall out on me because I was so malnourished. I could smell the hospital issued all-in-one shampoo/body wash. I could feel the fresh, clean hospital gown against my skin. But more than all that, I could feel the emotional state I was in. This totally-on-the-verge-of- sobbing-all-the-time feeling, but still trying so hard to be positive. ELO helped me. Doesn't that sound corny? But it did. Listening to that music helped me get into a positive mood.
I sat on the edge of my bed, working hard to keep my balance. Our routine was for Jeremy to put lotion on my legs and feet after I showered. I couldn't reach myself. We were given Aquafor to help the places where my skin was splitting from being so swollen, like behind my knees. He put the Aquafor on the water blisters that had formed on my feet from standing just those few moments too. And those were usually the best moments of my day.
Listening to ELO I wanted to cry. "Isn't my body amazing Jeremy?" I looked over at him driving the car. "Yeah. It really is," he responded. He knew what I was saying. I think he knew where my thoughts were too.
"It was just over a year ago and I could hardly walk I was so weak. Now look at me! I'm healthy and strong," I said as I jokingly flexed my arm muscles for him to see. He reached over and felt the muscles (no doubt impressed). I laughed, "Except don't look at the scars on my arm from where the PIC line was." That made me laugh. But really, now, that's an image that will also be stuck in my mind - my bicep muscle flexed, with the scars from where my PIC line was, just barely visible. That says it all.
Saturday, June 13, 2009
How how those sparrows sang for you
June 13, 2009
Thursday evening I went for some groceries later in the evening. The windows were down in the car. The moon was bright. I popped in Josh Rouse's 1972 CD, knowing that it would put me in a good mood. During the drive home Sparrows Over Birmingham started playing. I got chills as I listened. And then as I pulled into our driveway, I broke down in tears. I put my face in my hands and sobbed.
It's been a long time since I cried like that. The song made me think of Harper and all the things I would never get to see her do. "I should have a little girl with me right now." More tears.
It was one of those times when a few nagging thoughts hung around in the corner of my mind, just waiting for others to join so they could gang up on me.
First thought: At a work celebration this week, Grace's family was there. We met her boys. She commented that her one son was 3 pounds when he was born. My baby was 14 ounces when she was born.
Second thought: A little girl, maybe 18 months, was in my office this week. She was sick; runny nose, watery eyes, flushed cheeks. And I wanted to scoop her up and cradle her and rock her and tell her she would feel better soon.
Third thought: It was the fourth night in a row I had been home alone till late. I was supposed to have a child with me on nights like this to take care of and fill my time. On Facebook everyone talks about their kids. Their kids keep them busy. I don't have a kid to keep me busy - but I was supposed to.
Friday morning Jeremy and I woke up early and did some major yard work. I always love doing yard work. You see the fruit of your labor so quickly, and what better fruit to enjoy than a lovely back yard? As we were raking and pruning away I said, "I had a break down last night about Harper. It was just one of those times when things piled up on me."
"I know what you're talking about. That happens to me too," he said as he stood in the garbage can stomping the debris down to as small a space as he could so we could fit more in there.
"It's been a long time since that happened to me," I told him.
"I know. It's gonna happen to us the rest of our lives. It's just the time between will be longer." He went back to his stomping, I went back to my pruning. But she's been with me since then. Thoughts of her linger. And the ache is still there. Sweet little girl of mine . . .
Thursday evening I went for some groceries later in the evening. The windows were down in the car. The moon was bright. I popped in Josh Rouse's 1972 CD, knowing that it would put me in a good mood. During the drive home Sparrows Over Birmingham started playing. I got chills as I listened. And then as I pulled into our driveway, I broke down in tears. I put my face in my hands and sobbed.
It's been a long time since I cried like that. The song made me think of Harper and all the things I would never get to see her do. "I should have a little girl with me right now." More tears.
It was one of those times when a few nagging thoughts hung around in the corner of my mind, just waiting for others to join so they could gang up on me.
First thought: At a work celebration this week, Grace's family was there. We met her boys. She commented that her one son was 3 pounds when he was born. My baby was 14 ounces when she was born.
Second thought: A little girl, maybe 18 months, was in my office this week. She was sick; runny nose, watery eyes, flushed cheeks. And I wanted to scoop her up and cradle her and rock her and tell her she would feel better soon.
Third thought: It was the fourth night in a row I had been home alone till late. I was supposed to have a child with me on nights like this to take care of and fill my time. On Facebook everyone talks about their kids. Their kids keep them busy. I don't have a kid to keep me busy - but I was supposed to.
Friday morning Jeremy and I woke up early and did some major yard work. I always love doing yard work. You see the fruit of your labor so quickly, and what better fruit to enjoy than a lovely back yard? As we were raking and pruning away I said, "I had a break down last night about Harper. It was just one of those times when things piled up on me."
"I know what you're talking about. That happens to me too," he said as he stood in the garbage can stomping the debris down to as small a space as he could so we could fit more in there.
"It's been a long time since that happened to me," I told him.
"I know. It's gonna happen to us the rest of our lives. It's just the time between will be longer." He went back to his stomping, I went back to my pruning. But she's been with me since then. Thoughts of her linger. And the ache is still there. Sweet little girl of mine . . .
Thursday, June 11, 2009
Divine Intervention
June 11, 2009
There's this train of thought I've been having lately. It left the station last week in therapy when I was talking about my faith with Dr. N and sorting through some thoughts on how involved I believe God is in my life. I had it all figured out until we came to my relationship with Jeremy.
He had asked me something about me marrying Jeremy as the result of sound reasoning and decision making on my part. While I didn't want to argue against myself on that (smile), my response was, "Well, no, I guess I do believe in divine intervention sometimes." I grinned.
There were things about Jeremy that I was very aware of when we started dating. They were the things that drew me to him, that I knew I needed in a life partner. The first thing was that he was passionate. He had a passion for music (still does) and I loved that. I needed that for some reason. I needed to be with someone who had that inner fire. And as I'm writing this, I'm wondering why that was so important to me. I guess all I can say is that I was attracted to that.
The next thing was that he made me laugh. I knew I had to be with someone who made me laugh. I wanted to have fun in my life after all. I knew enough about myself then to know that I could be pretty intense sometimes. I knew I needed the balance of humor in my life. And boy did Jeremy have that. He jokes with me now saying, "Oh, remember the good old days when I could make you laugh?" Of course he says that after he's made some super stupid joke that I snark-laugh at because of how stupid it is and that's exactly why he told it to begin with. He still knows how to make me laugh.
The final thing was that I respected Jeremy. I watched other people interact with him and I knew that others respected him too. He was and still is an honorable man. There aren't a lot of those out there these days. I knew to grab on and hold tight when I found him.
So when I look at our marriage, which I consider the gift and blessing of my life, I would like to attribute it to my own good judgement and moral character. But who am I kidding? Do I really believe that those three attributes gave me enough criteria to know how Jeremy would fare in the trials and tribulations that lay ahead of us? Absolutely not. I was young when we got married. 22 years old. I look back now at how little I knew then. I know, we all do that as we age, don't we? But when I look back at myself then, I think there is no way that it was anything but divine intervention that allowed me to "end up with" Jeremy.
So this is another way my experience is shaping my faith. Because the best explanation I have of Jeremy in my life is divine intervention, I am led to believe that 1) God must have some good feelings towards me to give me such a wonderful gift; and 2) that he must be involved in my life sometimes on a very personal level. I just haven't figured out how frequently or why yet. But I guess I have a lifetime to figure that out, huh?
It couldn't have just been dumb luck. At least I don't want to believe that anyway.
There's this train of thought I've been having lately. It left the station last week in therapy when I was talking about my faith with Dr. N and sorting through some thoughts on how involved I believe God is in my life. I had it all figured out until we came to my relationship with Jeremy.
He had asked me something about me marrying Jeremy as the result of sound reasoning and decision making on my part. While I didn't want to argue against myself on that (smile), my response was, "Well, no, I guess I do believe in divine intervention sometimes." I grinned.
There were things about Jeremy that I was very aware of when we started dating. They were the things that drew me to him, that I knew I needed in a life partner. The first thing was that he was passionate. He had a passion for music (still does) and I loved that. I needed that for some reason. I needed to be with someone who had that inner fire. And as I'm writing this, I'm wondering why that was so important to me. I guess all I can say is that I was attracted to that.
The next thing was that he made me laugh. I knew I had to be with someone who made me laugh. I wanted to have fun in my life after all. I knew enough about myself then to know that I could be pretty intense sometimes. I knew I needed the balance of humor in my life. And boy did Jeremy have that. He jokes with me now saying, "Oh, remember the good old days when I could make you laugh?" Of course he says that after he's made some super stupid joke that I snark-laugh at because of how stupid it is and that's exactly why he told it to begin with. He still knows how to make me laugh.
The final thing was that I respected Jeremy. I watched other people interact with him and I knew that others respected him too. He was and still is an honorable man. There aren't a lot of those out there these days. I knew to grab on and hold tight when I found him.
So when I look at our marriage, which I consider the gift and blessing of my life, I would like to attribute it to my own good judgement and moral character. But who am I kidding? Do I really believe that those three attributes gave me enough criteria to know how Jeremy would fare in the trials and tribulations that lay ahead of us? Absolutely not. I was young when we got married. 22 years old. I look back now at how little I knew then. I know, we all do that as we age, don't we? But when I look back at myself then, I think there is no way that it was anything but divine intervention that allowed me to "end up with" Jeremy.
So this is another way my experience is shaping my faith. Because the best explanation I have of Jeremy in my life is divine intervention, I am led to believe that 1) God must have some good feelings towards me to give me such a wonderful gift; and 2) that he must be involved in my life sometimes on a very personal level. I just haven't figured out how frequently or why yet. But I guess I have a lifetime to figure that out, huh?
It couldn't have just been dumb luck. At least I don't want to believe that anyway.
Tuesday, June 9, 2009
For now . . .
June 9, 2009
Slow down Abby. I just need to slow down right now. My mind is spinning from all my thoughts. Tonight, I decided, is a no TV night. I just need a little silence.
I sat out in the hammock in the back yard for a little while this evening. And I thought. I thought about the Michael J. Fox book I've been listening to on CD lately, Always Looking Up. I just love it. And I will say that I am now a huge fan of MJF. But what I was thinking about this evening is the problem of pain. No one is without pain. Not a single soul in this world is without physical, mental, or emotional pain.
I was thinking about the fact that I don't have it all figured out yet. I don't have answers to "why?" I saw a hummingbird just over the fence in our neighbor's yard and I thought about Harper. I wondered whether her short little life was "meant" to happen that way? Was she only ever supposed to be 24 weeks along? Was that her purpose on this earth? I've had people tell me they believe her little (or should I say big?) spirit will come back to me in this life time. Then I started thinking, Do I believe that everything happens for a reason? No. I don't think I do. I think our world and all that happens in it is far too random for everything to be happening for a reason. Do I believe that we can make good come out of anything, thereby giving it a reason? Hm, maybe. Yeah. I think so. Is that what this is all about? Is it all about learning to make good things out of everything? Man, that seems just a little too optimistic to me.
I just don't get it. I don't know why we're here. I don't know why there is pain. I don't know how involved God (or a higher power, or whatever you want to call Her) is in our lives. I don't know what happens to our spirits when we die. I am starting to believe, however, that this earth has both heaven and hell on it. Don't you know people who are living in one or the other? Don't you know people who just seem to be living in hell on earth? And don't you know people who find peace and joy regardless? (Which to me is heaven.) I sure do. (Though I know fewer of the peaceful and joyful people than I do the hell on earth ones!)
I wish that there was a dogma or doctrine that I believed in that could answer these questions for me. But I feel like I need the questions to be answered, not by someone telling me the answers, but by me experiencing and believing them for myself. I have come to believe some powerful truths lately by following that formula. I think I'm going to stick with it.
But for the time being, my mind needs a rest. I think about these things all the time. And when I say all the time, I mean pretty much any time I'm not reading or listening to people talk. And I know this sounds flippant, but why does having the answers matter so much? I don't think it would change one thing about how I'm living my life on a day to day basis. (Although it might make me want to go back to my vegetarian lifestyle again - but I'll blog more on that another time.) So for now, I just want some rest.
Slow down Abby. I just need to slow down right now. My mind is spinning from all my thoughts. Tonight, I decided, is a no TV night. I just need a little silence.
I sat out in the hammock in the back yard for a little while this evening. And I thought. I thought about the Michael J. Fox book I've been listening to on CD lately, Always Looking Up. I just love it. And I will say that I am now a huge fan of MJF. But what I was thinking about this evening is the problem of pain. No one is without pain. Not a single soul in this world is without physical, mental, or emotional pain.
I was thinking about the fact that I don't have it all figured out yet. I don't have answers to "why?" I saw a hummingbird just over the fence in our neighbor's yard and I thought about Harper. I wondered whether her short little life was "meant" to happen that way? Was she only ever supposed to be 24 weeks along? Was that her purpose on this earth? I've had people tell me they believe her little (or should I say big?) spirit will come back to me in this life time. Then I started thinking, Do I believe that everything happens for a reason? No. I don't think I do. I think our world and all that happens in it is far too random for everything to be happening for a reason. Do I believe that we can make good come out of anything, thereby giving it a reason? Hm, maybe. Yeah. I think so. Is that what this is all about? Is it all about learning to make good things out of everything? Man, that seems just a little too optimistic to me.
I just don't get it. I don't know why we're here. I don't know why there is pain. I don't know how involved God (or a higher power, or whatever you want to call Her) is in our lives. I don't know what happens to our spirits when we die. I am starting to believe, however, that this earth has both heaven and hell on it. Don't you know people who are living in one or the other? Don't you know people who just seem to be living in hell on earth? And don't you know people who find peace and joy regardless? (Which to me is heaven.) I sure do. (Though I know fewer of the peaceful and joyful people than I do the hell on earth ones!)
I wish that there was a dogma or doctrine that I believed in that could answer these questions for me. But I feel like I need the questions to be answered, not by someone telling me the answers, but by me experiencing and believing them for myself. I have come to believe some powerful truths lately by following that formula. I think I'm going to stick with it.
But for the time being, my mind needs a rest. I think about these things all the time. And when I say all the time, I mean pretty much any time I'm not reading or listening to people talk. And I know this sounds flippant, but why does having the answers matter so much? I don't think it would change one thing about how I'm living my life on a day to day basis. (Although it might make me want to go back to my vegetarian lifestyle again - but I'll blog more on that another time.) So for now, I just want some rest.
Sunday, June 7, 2009
The human experience
June 7, 2009
Jeremy and I got up this morning and watched the French Open men's finals. For those of you who are not tennis fans, Roger Federer was playing to tie Pete Sampras' record of 14 championship wins, but if he won, he would have surpassed Sampras' record in that Sampras never won the French Open. For all his wins, Federer had not yet won the French Open. With the win, it would be difficult to argue with the statement that Federer is the best tennis player in history. And he won.
We were on the edge of our seats. Jeremy was clapping at every point, both of us vocally cheering on Federer. When it came to the last set, you could see Federer's eyes fill. He knew what was ahead of him. Something he had fought for for so long. And then Soderling hit the championship point into the net. Federer fell to his knees. He fell to his knees, hands to his face. He was crying. You could see his body gasping the way you do when you can't catch your breath for the emotion. And oh God, my tears fell too. "Yes Roger. You have accomplished something no other human has done before. You have bested the ghosts in your head. You no longer have to fear the failure of the French Open." I was right there with him. (It makes it that much easier to join in the emotion of the moment when you see how gracious and sportsman-like he is. When you know that he's a newly-wed. When you know that his wife sitting in his box was carrying his first child. How could you not be pulling for Roger?)
And then the class of the guy, to make his speech in French and English! (I have to admit, I was bragging for a moment to Jeremy about my Swiss roots.) So there I was, all hyped up over his win. Yes, a little caffeine was also contributing to the moment. And it was time for a run. That just seemed the next natural course of action for me.
I grabbed a Sigur Ros CD. I listened to track three the entire run (the CD we have doesn't have liner notes or tracks, so I don't know the name of the song, and I don't speak Icelandic, so I can't understand what they're saying either!). What a soundtrack for a run. Magnificent, pulsing, da-dum - - - da-dum - - - da-dum. I had to stop running. I couldn't keep up with the pace that was pushing through me. I wanted to raise my arms and fly. Yes Roger, we all have those moments in our lives when we can't believe we've made it this far! We can't believe we overcame that obstacle. And we all want to fall to our knees with the world cheering with us - YES!!
And once again, the connection of the human experience lifted me.
Jeremy and I got up this morning and watched the French Open men's finals. For those of you who are not tennis fans, Roger Federer was playing to tie Pete Sampras' record of 14 championship wins, but if he won, he would have surpassed Sampras' record in that Sampras never won the French Open. For all his wins, Federer had not yet won the French Open. With the win, it would be difficult to argue with the statement that Federer is the best tennis player in history. And he won.
We were on the edge of our seats. Jeremy was clapping at every point, both of us vocally cheering on Federer. When it came to the last set, you could see Federer's eyes fill. He knew what was ahead of him. Something he had fought for for so long. And then Soderling hit the championship point into the net. Federer fell to his knees. He fell to his knees, hands to his face. He was crying. You could see his body gasping the way you do when you can't catch your breath for the emotion. And oh God, my tears fell too. "Yes Roger. You have accomplished something no other human has done before. You have bested the ghosts in your head. You no longer have to fear the failure of the French Open." I was right there with him. (It makes it that much easier to join in the emotion of the moment when you see how gracious and sportsman-like he is. When you know that he's a newly-wed. When you know that his wife sitting in his box was carrying his first child. How could you not be pulling for Roger?)
And then the class of the guy, to make his speech in French and English! (I have to admit, I was bragging for a moment to Jeremy about my Swiss roots.) So there I was, all hyped up over his win. Yes, a little caffeine was also contributing to the moment. And it was time for a run. That just seemed the next natural course of action for me.
I grabbed a Sigur Ros CD. I listened to track three the entire run (the CD we have doesn't have liner notes or tracks, so I don't know the name of the song, and I don't speak Icelandic, so I can't understand what they're saying either!). What a soundtrack for a run. Magnificent, pulsing, da-dum - - - da-dum - - - da-dum. I had to stop running. I couldn't keep up with the pace that was pushing through me. I wanted to raise my arms and fly. Yes Roger, we all have those moments in our lives when we can't believe we've made it this far! We can't believe we overcame that obstacle. And we all want to fall to our knees with the world cheering with us - YES!!
And once again, the connection of the human experience lifted me.
Friday, June 5, 2009
Passionate heart to heart
June 5, 2009
We had, hm, let's call it a passionate heart to heart between Jeremy and me this morning. If you've been reading my blog lately you have probably picked up on the fact that I'm full of ideas right now. Jeremy, as my life partner, has been getting barraged with those ideas as of late. On the days that he works long hours, I have been sending him e-mails (numerous) about me opening businesses, taking trips, enrolling in classes, etc., etc. (My brother laughed at me recently asking if I was a little manic.) I can write about it with humor right now, but this morning when we "talked," it was a little more intense of a conversation.
It started when I was on the phone with my sister-in-law picking her brain about what starting a business is like and throwing out all kinds of ideas of my own. Jeremy was overhearing the conversation. When I hung up, I noticed that his brow was furrowed. "What's going on? What's wrong?" I opened the flood gates.
Jeremy and I are in very different places right now with what we need and want from life. Understandably so. While we have been navigating the storm together, we are still two very different people who react differently to crisis and stress. And really, let's face it, Jeremy's experiences the past year and a half were as the main support and as caretaker of me. I'm the one who had the life and death experiences. Yes, we went through it together, but there is no way we could expect to be the same place emotionally processing everything.
While I am excited about really living life now, Jeremy is needing stability and calm. And this morning we needed to spend some time hashing out what we both need from each other. It was a clarifying conversation. This is where I'm at, this is what I need, this is what I need from you. And this is where he's at, this is what he needs, and this is what he needs from me. I broke down sobbing at one point. I was just overwhelmed with the intensity of everything we both have been through.
So anyway. I wanted to write about this because I think it's an important part of getting through tragedy as a couple. Tragedy changes you; both of you. This morning as we talked, I could hear the conversation going other ways: "I just don't want what you want anymore." I could see how couples get through a tragedy together, but then end up separating. But what went through my mind as we reached that fork in the road in our conversation was, "This man loves me so much. And I love him deeply." I've always wanted to be with Jeremy first, everything else second. That has never changed. And yes, we finally reached the point in our conversation, "We're okay then?" "Yeah, we're okay."
I guess I was just struck today by the fact that you can get through the actual tragedy, but that doesn't mean you still aren't affected by it. There's still so much to sort through. But really, that's the way marriage is anyway, right? It just seems more intense when you're exhausted.
We had, hm, let's call it a passionate heart to heart between Jeremy and me this morning. If you've been reading my blog lately you have probably picked up on the fact that I'm full of ideas right now. Jeremy, as my life partner, has been getting barraged with those ideas as of late. On the days that he works long hours, I have been sending him e-mails (numerous) about me opening businesses, taking trips, enrolling in classes, etc., etc. (My brother laughed at me recently asking if I was a little manic.) I can write about it with humor right now, but this morning when we "talked," it was a little more intense of a conversation.
It started when I was on the phone with my sister-in-law picking her brain about what starting a business is like and throwing out all kinds of ideas of my own. Jeremy was overhearing the conversation. When I hung up, I noticed that his brow was furrowed. "What's going on? What's wrong?" I opened the flood gates.
Jeremy and I are in very different places right now with what we need and want from life. Understandably so. While we have been navigating the storm together, we are still two very different people who react differently to crisis and stress. And really, let's face it, Jeremy's experiences the past year and a half were as the main support and as caretaker of me. I'm the one who had the life and death experiences. Yes, we went through it together, but there is no way we could expect to be the same place emotionally processing everything.
While I am excited about really living life now, Jeremy is needing stability and calm. And this morning we needed to spend some time hashing out what we both need from each other. It was a clarifying conversation. This is where I'm at, this is what I need, this is what I need from you. And this is where he's at, this is what he needs, and this is what he needs from me. I broke down sobbing at one point. I was just overwhelmed with the intensity of everything we both have been through.
So anyway. I wanted to write about this because I think it's an important part of getting through tragedy as a couple. Tragedy changes you; both of you. This morning as we talked, I could hear the conversation going other ways: "I just don't want what you want anymore." I could see how couples get through a tragedy together, but then end up separating. But what went through my mind as we reached that fork in the road in our conversation was, "This man loves me so much. And I love him deeply." I've always wanted to be with Jeremy first, everything else second. That has never changed. And yes, we finally reached the point in our conversation, "We're okay then?" "Yeah, we're okay."
I guess I was just struck today by the fact that you can get through the actual tragedy, but that doesn't mean you still aren't affected by it. There's still so much to sort through. But really, that's the way marriage is anyway, right? It just seems more intense when you're exhausted.
Thursday, June 4, 2009
Oh the possibilities!
June 4, 2009
The sky was cotton candy tonight. I'm home alone this evening as Jeremy's working late. I met with Dr. N for what may be my final therapy session with him after running home to let Django out after work. Dr. N said he thinks I'm doing well (as do I). We aren't going to schedule any more sessions. I can see him or talk to him on an as needed basis. He said I could go off my anti-depressants in a few months. Actually, he said that if I wanted to try to go off them now I could, and just start taking them again if I felt I needed to. Statistically the six month period after a depression has ended is a time that one is more vulnerable to another episode, so that's why doctors suggest staying on antidepressants for six months (for people who have had more than one episode of depression but longer periods of time between the episodes). I think I'll stay on it just to be safe. Why mess with a good thing, right?
I'm sort of tired about talking about my recovery. I feel like I'm recovered. I don't see myself as a sick person any more. I see myself as me, but different. Better - smile.
I'm excited about the possibilities that life has for me. I feel so freed up. No more internal need to prove myself. It's time to enjoy myself and enjoy life. I'm just going to hit the "stop" button on the tape that starts playing; "But that's selfish Abby." It's not selfish. I want to feel happy and alive and to do the things that make me feel that way. I believe ultimately that's what God wants for us too - joy. (Or maybe I'm putting that on God to justify what I'm feeling! Maybe he/she really does want that for us, but I'm saying it now because it fits my purpose! Oops. Probably not a good thing to do. Sorry.)
Anyway . . . I cancelled my dilation that was scheduled for tomorrow because I don't think I need it. That means I have a free day ahead of me as I'm not working Fridays right now. If I go a good couple of months with only needing a dilation or two, I'm going to go back to working Fridays again. In the meantime, I'm going to enjoy the free Fridays that I do have! Oh the possibilities of a free day!!
The sky was cotton candy tonight. I'm home alone this evening as Jeremy's working late. I met with Dr. N for what may be my final therapy session with him after running home to let Django out after work. Dr. N said he thinks I'm doing well (as do I). We aren't going to schedule any more sessions. I can see him or talk to him on an as needed basis. He said I could go off my anti-depressants in a few months. Actually, he said that if I wanted to try to go off them now I could, and just start taking them again if I felt I needed to. Statistically the six month period after a depression has ended is a time that one is more vulnerable to another episode, so that's why doctors suggest staying on antidepressants for six months (for people who have had more than one episode of depression but longer periods of time between the episodes). I think I'll stay on it just to be safe. Why mess with a good thing, right?
I'm sort of tired about talking about my recovery. I feel like I'm recovered. I don't see myself as a sick person any more. I see myself as me, but different. Better - smile.
I'm excited about the possibilities that life has for me. I feel so freed up. No more internal need to prove myself. It's time to enjoy myself and enjoy life. I'm just going to hit the "stop" button on the tape that starts playing; "But that's selfish Abby." It's not selfish. I want to feel happy and alive and to do the things that make me feel that way. I believe ultimately that's what God wants for us too - joy. (Or maybe I'm putting that on God to justify what I'm feeling! Maybe he/she really does want that for us, but I'm saying it now because it fits my purpose! Oops. Probably not a good thing to do. Sorry.)
Anyway . . . I cancelled my dilation that was scheduled for tomorrow because I don't think I need it. That means I have a free day ahead of me as I'm not working Fridays right now. If I go a good couple of months with only needing a dilation or two, I'm going to go back to working Fridays again. In the meantime, I'm going to enjoy the free Fridays that I do have! Oh the possibilities of a free day!!
Wednesday, June 3, 2009
The gates of hell
June 3, 2009
As I was driving in to work this morning the "Hospital" sign caught my eye. "Yeah, that's probably the closest hospital to us," I thought, "but it's not the one I go to." And then I was back to April 29, 2008, the night we had to call the ambulance to come and get me. I had been home just five days after a month long hospitalization and delivered Harper just a few days before. The EMT asked where I wanted to go. I told him UMC. "They're really busy tonight mam. It'll be a long wait," he said. "I don't care. I just spent a month there. They know me." He said he understood and off we went, me strapped down to the gurney, afraid my bowels would let loose more blood on the ride there. Afraid I would lose consciousness again (which I did two or three more times after getting to the ER). Afraid I would die.
Wow, that was over a year ago now. Still the thoughts of it make my heart race and my fists clench. I thought about where I was a year ago today. I was back at home recovering from my colectomy, learning to cope with an ostomy bag. Those were such dark days. I could barely get off the couch. I broke down a couple times each day sobbing, telling Jeremy I just wanted to die, telling him if he was going to leave me I wouldn't blame him, and wouldn't he just do it now to get it over with?
But here I am now. I'm okay. I'm better than okay. I'm at peace. I feel alive. I'm living life. And I desperately want people who are in that dark place to know that you can get through it. And I wonder what will happen in my future that will cause me to look back on this time in my life for inspiration? What darkness lies ahead that I will have to pull through and remind myself that I can indeed pull through it? I was listening to Tom Petty sing "I won't back down, no I won't back down. You can stand me up at the gates of hell but I won't back down." I almost giggled inside thinking about the fact that I did not back down. I wanted to. Yes I wanted to - plenty of times. But I didn't. I kept going. You can stand me up at the gates of hell, but I won't back down.
I started thinking about all the people in my life who are struggling. We all have our own private hells to go through. Every single one of us. And every hell might be different, but they are all hell nonetheless. And we can help each other through it. We can inspire each other, comfort each other, and encourage each other, so long as we don't judge each other's hell. At that moment I got chills. Sometimes when I'm thinking about something that feels like truth to me, I get this visceral response. It's like my physical being is acknowledging the truth. This morning I felt that in thinking about the connections we have with each other in our humanity. I feel it all the time these days.
As I was driving in to work this morning the "Hospital" sign caught my eye. "Yeah, that's probably the closest hospital to us," I thought, "but it's not the one I go to." And then I was back to April 29, 2008, the night we had to call the ambulance to come and get me. I had been home just five days after a month long hospitalization and delivered Harper just a few days before. The EMT asked where I wanted to go. I told him UMC. "They're really busy tonight mam. It'll be a long wait," he said. "I don't care. I just spent a month there. They know me." He said he understood and off we went, me strapped down to the gurney, afraid my bowels would let loose more blood on the ride there. Afraid I would lose consciousness again (which I did two or three more times after getting to the ER). Afraid I would die.
Wow, that was over a year ago now. Still the thoughts of it make my heart race and my fists clench. I thought about where I was a year ago today. I was back at home recovering from my colectomy, learning to cope with an ostomy bag. Those were such dark days. I could barely get off the couch. I broke down a couple times each day sobbing, telling Jeremy I just wanted to die, telling him if he was going to leave me I wouldn't blame him, and wouldn't he just do it now to get it over with?
But here I am now. I'm okay. I'm better than okay. I'm at peace. I feel alive. I'm living life. And I desperately want people who are in that dark place to know that you can get through it. And I wonder what will happen in my future that will cause me to look back on this time in my life for inspiration? What darkness lies ahead that I will have to pull through and remind myself that I can indeed pull through it? I was listening to Tom Petty sing "I won't back down, no I won't back down. You can stand me up at the gates of hell but I won't back down." I almost giggled inside thinking about the fact that I did not back down. I wanted to. Yes I wanted to - plenty of times. But I didn't. I kept going. You can stand me up at the gates of hell, but I won't back down.
I started thinking about all the people in my life who are struggling. We all have our own private hells to go through. Every single one of us. And every hell might be different, but they are all hell nonetheless. And we can help each other through it. We can inspire each other, comfort each other, and encourage each other, so long as we don't judge each other's hell. At that moment I got chills. Sometimes when I'm thinking about something that feels like truth to me, I get this visceral response. It's like my physical being is acknowledging the truth. This morning I felt that in thinking about the connections we have with each other in our humanity. I feel it all the time these days.
Tuesday, June 2, 2009
Anticipation
June 2, 2009
I feel like I'm in this constant state of anticipation lately. I'm expecting something; some opportunity or change to come. I feel more open to possibilities now than I ever have been before. I think that's a good thing. It seems to me that means I'm not afraid any more. Maybe what I'm feeling is just the absence of fear? But it seems more than that. It's about my priorities falling in to place too. All these standards that I felt like I was trying to meet before just don't matter to me any more. It's so freeing. It's not that I don't care, it's that I understand in the core of my being what I should be caring about.
I feel like I'm in this constant state of anticipation lately. I'm expecting something; some opportunity or change to come. I feel more open to possibilities now than I ever have been before. I think that's a good thing. It seems to me that means I'm not afraid any more. Maybe what I'm feeling is just the absence of fear? But it seems more than that. It's about my priorities falling in to place too. All these standards that I felt like I was trying to meet before just don't matter to me any more. It's so freeing. It's not that I don't care, it's that I understand in the core of my being what I should be caring about.
Monday, June 1, 2009
Lost (not the show)
June 1, 2009
I keep having this dream. Last night was at least the third time in the last month or two that I've had this same dream. I'm somewhere in a city (I think it was Minneapolis last night), and I'm trying to get somewhere else, but I keep getting lost. I ask for help, and people tell me where I am, but no one can really tell me how to get where I need to go. Last night I was roller-skating through the city. I almost got hit by a car a couple of times. My heart was beating so fast as I tried to keep up enough strength and speed to get where I needed to go. When I found a good pace I got excited and thought that I was almost there, only to realize I was lost again. A couple of times I felt like my legs wouldn't move the way I wanted them to and I had to learn how to roller-skate in a different way. It was really exhausting.
Okay, so writing out this dream it seems obvious to me that the dream is a metaphor for my life. I just want to cry because I'm so tired of trying to figure out what the next thing is that I should do; what the right thing is for me to do. And I really do feel lost. Not lost in the present, but lost in the future - if that makes any kind of sense.
I went to see Dr. G today, my GI doctor. When I told him that I hadn't given up hope on the dilations he basically said that not a lot of research has been done about the efficacy of dilations, but that usually people get impatient and want to have surgery done to get it over with. He said he has a patient like that right now, but that patient also WANTS his ostomy back, so he's not worried about having the surgery. Anyway, he said that it could be that with more time the dilations will take.
As Jeremy and I were sitting there talking about it with him, we realized that it's been since almost two months since I really needed a dilation (needed meaning I was in some pain from the stricture). Things have closed up a little on me since then, but it's been bearable. So I felt really good about that.
As far as the chronic pouchitis goes, Dr. G said that if chronic pouchitis can be treated with Cipro, he would recommend doing that, not surgery. He said that if a treatment is working that's what he suggests (makes sense -right?). I asked him about rotating antibiotics with the Cipro. He said that he thinks it's better to stay on one antibiotic, especially if it's working. He said yes, long term your body can get bugs that are resistant to the Cipro, but there are also meds they have now that can treat those bugs too. So that made me feel good as well. I'm currently taking 1000 mg of Cipro a day. He said that for long term treatment, he would recommend trying to go down on the dosage over time and try to get it at 250 mg a day if possible, but it was Dr. T who prescribed the Cipro, and he wasn't going to change her prescription - he was just giving me his input (because I asked).
All in all I told him I've been feeling good. He said sometimes people can look good and they are really very sick, but he didn't think that was true of me. He said I looked good and he was happy to see that. He also said that it seems like the people who were the sickest when they had their surgeries are also the ones who have the most complications, and that I was really sick. He said he'd see me again in 6 months!
I came away feeling very hopeful that I will be able to avoid surgery #4 (and surgery #5 - ileostomy takedown #2). Jeremy was happy about it too, but said that he has to stay prepared mentally for me needing another surgery. It's too much of a punch in the gut for him to hope that I won't need surgery and then find out I do. I told him that I totally understand that and that I don't feel unsupported by him for taking that stance at all. I told him that I need him to be grounded like that. I look to him for that. I think we balance each other out beautifully, and I need that.
So that's where things are today. I'm still holding out hope!
I keep having this dream. Last night was at least the third time in the last month or two that I've had this same dream. I'm somewhere in a city (I think it was Minneapolis last night), and I'm trying to get somewhere else, but I keep getting lost. I ask for help, and people tell me where I am, but no one can really tell me how to get where I need to go. Last night I was roller-skating through the city. I almost got hit by a car a couple of times. My heart was beating so fast as I tried to keep up enough strength and speed to get where I needed to go. When I found a good pace I got excited and thought that I was almost there, only to realize I was lost again. A couple of times I felt like my legs wouldn't move the way I wanted them to and I had to learn how to roller-skate in a different way. It was really exhausting.
Okay, so writing out this dream it seems obvious to me that the dream is a metaphor for my life. I just want to cry because I'm so tired of trying to figure out what the next thing is that I should do; what the right thing is for me to do. And I really do feel lost. Not lost in the present, but lost in the future - if that makes any kind of sense.
I went to see Dr. G today, my GI doctor. When I told him that I hadn't given up hope on the dilations he basically said that not a lot of research has been done about the efficacy of dilations, but that usually people get impatient and want to have surgery done to get it over with. He said he has a patient like that right now, but that patient also WANTS his ostomy back, so he's not worried about having the surgery. Anyway, he said that it could be that with more time the dilations will take.
As Jeremy and I were sitting there talking about it with him, we realized that it's been since almost two months since I really needed a dilation (needed meaning I was in some pain from the stricture). Things have closed up a little on me since then, but it's been bearable. So I felt really good about that.
As far as the chronic pouchitis goes, Dr. G said that if chronic pouchitis can be treated with Cipro, he would recommend doing that, not surgery. He said that if a treatment is working that's what he suggests (makes sense -right?). I asked him about rotating antibiotics with the Cipro. He said that he thinks it's better to stay on one antibiotic, especially if it's working. He said yes, long term your body can get bugs that are resistant to the Cipro, but there are also meds they have now that can treat those bugs too. So that made me feel good as well. I'm currently taking 1000 mg of Cipro a day. He said that for long term treatment, he would recommend trying to go down on the dosage over time and try to get it at 250 mg a day if possible, but it was Dr. T who prescribed the Cipro, and he wasn't going to change her prescription - he was just giving me his input (because I asked).
All in all I told him I've been feeling good. He said sometimes people can look good and they are really very sick, but he didn't think that was true of me. He said I looked good and he was happy to see that. He also said that it seems like the people who were the sickest when they had their surgeries are also the ones who have the most complications, and that I was really sick. He said he'd see me again in 6 months!
I came away feeling very hopeful that I will be able to avoid surgery #4 (and surgery #5 - ileostomy takedown #2). Jeremy was happy about it too, but said that he has to stay prepared mentally for me needing another surgery. It's too much of a punch in the gut for him to hope that I won't need surgery and then find out I do. I told him that I totally understand that and that I don't feel unsupported by him for taking that stance at all. I told him that I need him to be grounded like that. I look to him for that. I think we balance each other out beautifully, and I need that.
So that's where things are today. I'm still holding out hope!
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