August 30, 2009
It's hard to believe sometimes that there was a before. My niece's fourth birthday is on September 1st. I was remembering the day she was born and I was thinking about how hard it is to remember our family before Delia. Every child brings that sense with him or her, don't you think? And then I thought about Harper and how her brief presence in our lives has changed everything. She was with us for 24 weeks and she changed our past, our present, and our future.
Jeremy and my 12th wedding anniversary is on September 5th. I think back on the times we've spent together and I know that we laughed. I remember laughter. But somehow thinking about those times makes me sad, because I know I will never experience laughter like that again. I'm not trying to be all doomsday here. I'm really not. And I am deeply grateful for those moments of innocent laughter and joy. Those moments have carried me through some tough times. Oh, and here comes another hospital memory. Bear with me:
It must have been after one of my surgeries because I remember that I was laying in the bed (which I wasn't able to do at a certain point in time during my hospitalization). Jeremy had just left to go home and get some sleep for the night. The sun was setting outside and I was preparing myself mentally for me nighttime hospital routine. It felt like torture sometimes, but sometimes those moments in the evening when the nurses were changing shifts were actually peaceful moments for me. As I laid in the bed gazing out the window I remembered Jeremy and me at the beach in San Diego on our 10th anniversary. We played like children in the ocean. We tried to ride the waves and we laughed at each other as we got knocked about.
A smile crept across my face. I picked up the phone and called home, knowing that Jeremy wasn't there yet, but I wanted to share the memory with him so I left a message. "Hey sweetie. It's me. I was just laying here thinking about our San Diego trip and how we laughed and played in the ocean and what a wonderful time that was. We'll do it again when I'm well. I love you. I just wanted you to know I was thinking about that. Get some rest tonight. I'll be okay."
We laughed together. And it's not like we haven't laughed since. There is still laughter in our home. Oh . . . I love it when there's laughter. The core of my being is satisfied when Jeremy and I laugh together. But it's a different kind of laughter now. It's wiser, grounded, holding on just a little bit because it doesn't know for sure what's around the corner. It knows, and it will never be as carefree as it was before.
I know time heals all wounds. I get that. I really do. I've experienced that. Things have gotten better for me as time has gone by. But there are scars. There are all kinds of scars. And there are scars in my laughter now.
Sunday, August 30, 2009
Saturday, August 29, 2009
Tom said it best
August 29, 2009
Jeremy was gone today, and I found myself thinking about him off and on throughout the day. One memory in particular has been replaying in my mind. One hospital memory:
I needed help to shower. I couldn't do it on my own. At first it started off with me just needing help wrapping my arm so the IVs and PIC line wouldn't get wet. Jeremy followed me into the bathroom and started the water running so the temperature would be just right when I was ready to get in. He helped me pull tight the plastic sleeves I was given to cover all the tubes hanging off me. But it didn't take long for me to need more help than that. Within a matter of days my body was beginning to get heavy. I remember the first day that I noticed it. I laughed a nervous laugh, "I'm starting to look like the Michellen Man," I said to him. He laughed with me and reassured me that didn't matter. But my laughter turned to panic inside me as I realized I could no longer lift the extra weight my legs were carrying, nor could I bend my knees to step into the tub. Jeremy bent over in the anything-but-spacious bathroom, steam filling the room, sweat rolling down his face because he was fully clothed, lifted my leg and set it into the tub for me.
When it was time to dry off I called his name and he came back into the bathroom. I stood before him, naked and swollen, every inch of my skin hurting and stretching, tubes and bruises all over. And there we were, a growing family, caring for each other the best we could in the hot little hospital bathroom. Ever so gently he took a towel and dried me off. It was a physical act, a gentle act, an act of love. That physical act of love and intimacy was precious to me, as precious as any love we've made.
Every day he helped me with my shower. It was the one "activity" that I still participated in, though it exhausted me and was usually followed by a nap. I won't ever forget the feel of the hot water on my skin, running through my hair. Everything hurt, but the water, oh the water soothed me.
As I was thinking about this today, I once again felt blessed. I am blessed to have been given such a gift of love. I thought about Jeremy and my future and about growing old together. I love the idea of taking care of each other in these physical, tangible ways as we age. These bodies of ours are going to break down on us slowly but surely (please God, let it happen slowly!). But I feel secure in knowing that those breakdowns will be met with tenderness by my love. It's a gift I tell you. A gift. And I'm thankful.
Till the wheels come off . . .
Jeremy was gone today, and I found myself thinking about him off and on throughout the day. One memory in particular has been replaying in my mind. One hospital memory:
I needed help to shower. I couldn't do it on my own. At first it started off with me just needing help wrapping my arm so the IVs and PIC line wouldn't get wet. Jeremy followed me into the bathroom and started the water running so the temperature would be just right when I was ready to get in. He helped me pull tight the plastic sleeves I was given to cover all the tubes hanging off me. But it didn't take long for me to need more help than that. Within a matter of days my body was beginning to get heavy. I remember the first day that I noticed it. I laughed a nervous laugh, "I'm starting to look like the Michellen Man," I said to him. He laughed with me and reassured me that didn't matter. But my laughter turned to panic inside me as I realized I could no longer lift the extra weight my legs were carrying, nor could I bend my knees to step into the tub. Jeremy bent over in the anything-but-spacious bathroom, steam filling the room, sweat rolling down his face because he was fully clothed, lifted my leg and set it into the tub for me.
When it was time to dry off I called his name and he came back into the bathroom. I stood before him, naked and swollen, every inch of my skin hurting and stretching, tubes and bruises all over. And there we were, a growing family, caring for each other the best we could in the hot little hospital bathroom. Ever so gently he took a towel and dried me off. It was a physical act, a gentle act, an act of love. That physical act of love and intimacy was precious to me, as precious as any love we've made.
Every day he helped me with my shower. It was the one "activity" that I still participated in, though it exhausted me and was usually followed by a nap. I won't ever forget the feel of the hot water on my skin, running through my hair. Everything hurt, but the water, oh the water soothed me.
As I was thinking about this today, I once again felt blessed. I am blessed to have been given such a gift of love. I thought about Jeremy and my future and about growing old together. I love the idea of taking care of each other in these physical, tangible ways as we age. These bodies of ours are going to break down on us slowly but surely (please God, let it happen slowly!). But I feel secure in knowing that those breakdowns will be met with tenderness by my love. It's a gift I tell you. A gift. And I'm thankful.
Till the wheels come off . . .
Wednesday, August 26, 2009
My unfulfilled dream
August 26, 2009
3:30 in the morning and my mind won't allow me to sleep. We're wrestling, my thoughts and me. I'm trying desperately to pin just one thought to the ground into submission. No such luck. I'm losing the match.
We got an adoption packet in the mail last week. I'm just not ready. I'm not ready to give up on being pregnant myself. I quit taking my Cipro two days later - the medication that isn't safe to be pregnant on. On Monday I found myself gazing out the window remembering what it felt like to be pregnant. Not just the physical part of it, but the mental part. It was as if I could feel it all again. My mind was at peace when I was pregnant. It was this peace that I have never experienced before. Every fiber of my being was creating and I was left in a state of exhausted peace. And now I find myself at a point where I'm willing to do almost anything to create again.
But it's not just that either. We came so close. I saw how perfect all her little parts were - perfect! Perfect, but no life. Milk came out of my breasts, but no baby to release to. My whole being was stymied. Cut off in the middle of it's most perfect, amazing creation. And I'm just not ready to give up the hope of that happening again. Not yet anyway.
But even if I do okay off the Cipro, that doesn't make the decision easy. Pregnancy pushed me to the edge of death. Although the doctors have said that wouldn't happen again, the fear is deep. Deeper than most could imagine. They also wouldn't have predicted that what happened to me would have happened. So where does that leave me? Utterly confused. Confused and aching to create.
I sat across the table from Jeremy at dinner last night. I looked at his eyes, the shape of them, and at the details of his eyebrows. I saw Harper. She had those same shapes. Her precious eyes that I never saw open. She looked more like her daddy than her mommy. Yeah, I'm just not ready to give up my dream yet. My unfulfilled dream.
3:30 in the morning and my mind won't allow me to sleep. We're wrestling, my thoughts and me. I'm trying desperately to pin just one thought to the ground into submission. No such luck. I'm losing the match.
We got an adoption packet in the mail last week. I'm just not ready. I'm not ready to give up on being pregnant myself. I quit taking my Cipro two days later - the medication that isn't safe to be pregnant on. On Monday I found myself gazing out the window remembering what it felt like to be pregnant. Not just the physical part of it, but the mental part. It was as if I could feel it all again. My mind was at peace when I was pregnant. It was this peace that I have never experienced before. Every fiber of my being was creating and I was left in a state of exhausted peace. And now I find myself at a point where I'm willing to do almost anything to create again.
But it's not just that either. We came so close. I saw how perfect all her little parts were - perfect! Perfect, but no life. Milk came out of my breasts, but no baby to release to. My whole being was stymied. Cut off in the middle of it's most perfect, amazing creation. And I'm just not ready to give up the hope of that happening again. Not yet anyway.
But even if I do okay off the Cipro, that doesn't make the decision easy. Pregnancy pushed me to the edge of death. Although the doctors have said that wouldn't happen again, the fear is deep. Deeper than most could imagine. They also wouldn't have predicted that what happened to me would have happened. So where does that leave me? Utterly confused. Confused and aching to create.
I sat across the table from Jeremy at dinner last night. I looked at his eyes, the shape of them, and at the details of his eyebrows. I saw Harper. She had those same shapes. Her precious eyes that I never saw open. She looked more like her daddy than her mommy. Yeah, I'm just not ready to give up my dream yet. My unfulfilled dream.
Sunday, August 23, 2009
Perpetual student
August 23, 2009
Oh, so much happening lately . . . where to start? I had my dilation on Tuesday. It went really well, but was a little confusing for me. Dr. T said that I actually did not need the dilation, that there was no inflammation of my rectum and no inflammation of my pouch. All of this was excellent news - really. But it left me confused about the signals I thought my body was sending me.
It gets frustrating at times trying to learn about my body again. The same thing is holding true for running too. After Jeremy and my six mile run, I started not feeling well. I know folks with j-pouches run marathons, but I think I was being overly ambitious to think I could do a marathon in December. Hydration is a challenge for me even more so now, and starting a training schedule in Tucson in the summer for the first time without a colon is just not the smart thing to do at this point. Not that I won't keep running. And I may end up doing the marathon and just walking it, but I think I need to get to know this new body of mine a little better before I tackle such an ambitious physical challenge.
It's all a journey, isn't it? I think back to how I felt about my body in high school, college, my twenties, etc. So many ups and downs. It wasn't until we decided to try to get pregnant that I was actually at peace with my body. And really, that played a part in the timing of getting pregnant too. I was finally comfortable in my own skin. I finally felt like if I had a daughter, I would be in a place where I could teach her to feel good about herself and take care of herself for the right reasons. I was living the healthiest lifestyle I have ever lived - eating right, enjoying eating, exercising, and feeling grateful for the body that God gave me on a daily basis. I remember saying to Jeremy when I got pregnant, "Well, say good-bye to this body now because things are going to change!" I forewarned him about the sags and stretches that were on my horizon. He didn't care. He's always told me that when he married me he married me for life and knew that both of our bodies were going to change over the years.
And so here I am now. I have to re-learn how to be comfortable in my skin. And that's okay. It's a perpetual lesson for all of us. I'm really no different. It's a beautiful lesson too. The body crumbles. All we are left with are these spirits that we have. What can my spirit learn from the crumbling of my body? It can learn to be gentle. It can learn to be patient. It can learn that vanity means nothing. There some pretty powerful stuff in that, don't you think? I guess I'll just keep learning!
Oh, so much happening lately . . . where to start? I had my dilation on Tuesday. It went really well, but was a little confusing for me. Dr. T said that I actually did not need the dilation, that there was no inflammation of my rectum and no inflammation of my pouch. All of this was excellent news - really. But it left me confused about the signals I thought my body was sending me.
It gets frustrating at times trying to learn about my body again. The same thing is holding true for running too. After Jeremy and my six mile run, I started not feeling well. I know folks with j-pouches run marathons, but I think I was being overly ambitious to think I could do a marathon in December. Hydration is a challenge for me even more so now, and starting a training schedule in Tucson in the summer for the first time without a colon is just not the smart thing to do at this point. Not that I won't keep running. And I may end up doing the marathon and just walking it, but I think I need to get to know this new body of mine a little better before I tackle such an ambitious physical challenge.
It's all a journey, isn't it? I think back to how I felt about my body in high school, college, my twenties, etc. So many ups and downs. It wasn't until we decided to try to get pregnant that I was actually at peace with my body. And really, that played a part in the timing of getting pregnant too. I was finally comfortable in my own skin. I finally felt like if I had a daughter, I would be in a place where I could teach her to feel good about herself and take care of herself for the right reasons. I was living the healthiest lifestyle I have ever lived - eating right, enjoying eating, exercising, and feeling grateful for the body that God gave me on a daily basis. I remember saying to Jeremy when I got pregnant, "Well, say good-bye to this body now because things are going to change!" I forewarned him about the sags and stretches that were on my horizon. He didn't care. He's always told me that when he married me he married me for life and knew that both of our bodies were going to change over the years.
And so here I am now. I have to re-learn how to be comfortable in my skin. And that's okay. It's a perpetual lesson for all of us. I'm really no different. It's a beautiful lesson too. The body crumbles. All we are left with are these spirits that we have. What can my spirit learn from the crumbling of my body? It can learn to be gentle. It can learn to be patient. It can learn that vanity means nothing. There some pretty powerful stuff in that, don't you think? I guess I'll just keep learning!
Monday, August 17, 2009
"So this is a decision we're making, right?"
August 17, 2009
I called to schedule a dilation with Dr. T for this Friday and was told that she was out of town and wouldn't be able to get me in until the 28th. Yikes. That was just too long. I didn't know what to do. As "luck" would have it, my afternoon appointment cancelled at work. And I just so happened to remember that Dr. G is at the clinic seeing patients on Monday afternoons (and only Monday afternoons). He told me some time ago that if I ever needed anything just to show up at the clinic and tell them I was instructed to make a nuisance of myself until they paged him or until they got me in to see him. Hmmm . . . dare I? Yes. I dared.
I took off for the hospital around noon. I felt a little bit like a stalker - a doctor stalker - going there without an appointment, insisting that they let me see him, but he told me to. They kind of laughed at me when I told them I was supposed to make nuisance of myself. There was no problem getting me in to see him. I explained what had been going on. He told me that he would see if Dr. T could get me in (before she left for out of town), and if she couldn't, he would do the dilation himself. I sat in his office while the resident working with him made the phone call and voila! Appointment! I'll be going tomorrow around noon to have my dilation done. Jeremy can't get out of work, so our friend Davey (thanks Davey!) is going to take me.
I always get nervous before my dilations. Really, I get more nervous about any news I might be given after the procedure than I get about actually having the procedure done. Every time Dr. T dilates me she also puts the camera up in there to see how my rectum and my j-pouch are looking. That's when I find things out like my UC is flaring and my rectum is inflamed or it looks like I have pouchitis going on - stuff like that - never fun, but never really a surprise either. Sometimes she even uses the little claws and takes a biopsy of j-pouch tissue to see if it really is pouchitis. Ah, too much to worry about Abby. It's all out of your control anyway. Let go. Yeah. Let go.
After the procedure I'm a little loopy and very tired. I'm usually good for a three to four hour nap on those days, with plenty of bathroom excursions peppered in for fun. Oh the fun never ends!
Ahhh. Well. I'm purposefully not writing about today being August 17th. The would be day. It's just too much to think about right now. And maybe I've thought about it enough lately. Jeremy and I had a heart to heart on Friday about having a baby. Actually the conversation started with me talking about how restless I am in trying to find the right thing for my life. Jeremy said to me, "I think we stumbled onto something when you were pregnant Abby. I think your spirit needs to mother. And I think we need to do whatever we can to make that happen for you." And then of course we talked some more.
We talked about the possibilities of me getting to a point where I would be able to get pregnant. We talked about having someone be a surrogate for us and what our criteria would be for who that person could be. And we talked about adoption. Ultimately, we decided that we want to move forward in exploring all of those options. "So this is a decision we're making, right? It's not just a discussion?" I asked him. Yep. It's a decision. We're going to move forward in exploring our options for having a family. I sort of feel like I'm knocking on the door to the universe and waiting to see who will answer. I felt like I needed to blog about this too. I need to put it out there to open myself up to opportunity. Does that make sense? So here's me, opening myself up to opportunities. Let's see what happens . . .
I called to schedule a dilation with Dr. T for this Friday and was told that she was out of town and wouldn't be able to get me in until the 28th. Yikes. That was just too long. I didn't know what to do. As "luck" would have it, my afternoon appointment cancelled at work. And I just so happened to remember that Dr. G is at the clinic seeing patients on Monday afternoons (and only Monday afternoons). He told me some time ago that if I ever needed anything just to show up at the clinic and tell them I was instructed to make a nuisance of myself until they paged him or until they got me in to see him. Hmmm . . . dare I? Yes. I dared.
I took off for the hospital around noon. I felt a little bit like a stalker - a doctor stalker - going there without an appointment, insisting that they let me see him, but he told me to. They kind of laughed at me when I told them I was supposed to make nuisance of myself. There was no problem getting me in to see him. I explained what had been going on. He told me that he would see if Dr. T could get me in (before she left for out of town), and if she couldn't, he would do the dilation himself. I sat in his office while the resident working with him made the phone call and voila! Appointment! I'll be going tomorrow around noon to have my dilation done. Jeremy can't get out of work, so our friend Davey (thanks Davey!) is going to take me.
I always get nervous before my dilations. Really, I get more nervous about any news I might be given after the procedure than I get about actually having the procedure done. Every time Dr. T dilates me she also puts the camera up in there to see how my rectum and my j-pouch are looking. That's when I find things out like my UC is flaring and my rectum is inflamed or it looks like I have pouchitis going on - stuff like that - never fun, but never really a surprise either. Sometimes she even uses the little claws and takes a biopsy of j-pouch tissue to see if it really is pouchitis. Ah, too much to worry about Abby. It's all out of your control anyway. Let go. Yeah. Let go.
After the procedure I'm a little loopy and very tired. I'm usually good for a three to four hour nap on those days, with plenty of bathroom excursions peppered in for fun. Oh the fun never ends!
Ahhh. Well. I'm purposefully not writing about today being August 17th. The would be day. It's just too much to think about right now. And maybe I've thought about it enough lately. Jeremy and I had a heart to heart on Friday about having a baby. Actually the conversation started with me talking about how restless I am in trying to find the right thing for my life. Jeremy said to me, "I think we stumbled onto something when you were pregnant Abby. I think your spirit needs to mother. And I think we need to do whatever we can to make that happen for you." And then of course we talked some more.
We talked about the possibilities of me getting to a point where I would be able to get pregnant. We talked about having someone be a surrogate for us and what our criteria would be for who that person could be. And we talked about adoption. Ultimately, we decided that we want to move forward in exploring all of those options. "So this is a decision we're making, right? It's not just a discussion?" I asked him. Yep. It's a decision. We're going to move forward in exploring our options for having a family. I sort of feel like I'm knocking on the door to the universe and waiting to see who will answer. I felt like I needed to blog about this too. I need to put it out there to open myself up to opportunity. Does that make sense? So here's me, opening myself up to opportunities. Let's see what happens . . .
Sunday, August 16, 2009
Fear or no fear
August 16, 2009
There's a lot going on in my head today. I just haven't been feeling well the last week or so and it's really bumming me out. I could go into the details, but I'll spare you today. I don't know whether I'm having a UC flare or if the pouchitis is no longer being treated by the Cipro, or what. What I do know for sure is that I need another dilation. God damn it. So I'll call Dr. T tomorrow and see if she can get me in on Friday. My heart just sinks thinking about that. Really. Ugh. Yes, I know - I know - I could remind myself that my last dilation was June 19th and see how far I've come? Yep. I know. But today I'm disappointed and tired. I don't feel like convincing myself to be happy about it today. I don't feel like being happy that I have to finagle my work schedule so I can go to the hospital, be hooked up to an IV, stripped to my skivvies and have dilaters stuck up my rectum, yelling in pain that I vaguely remember after the drugs wear off. I just don't feel up to it today.
Yeah, and then tomorrow is another of my painful anniversary days. My would be due date. It represents what would have been Harper's first birthday. There's just so much wrapped in that, I can't even go there. I really can't.
I'm just so tired tonight. The kind of tired you get when something's wearing out your body and you have no control over it. I've been going to the bathroom so much this weekend, and it's been kind of painful. I forgot what that was like. And of course for me, with pain comes fear. And I just want to curl up in a ball and sleep it away and wake up all better. But that doesn't really happen for me.
My body has betrayed me. It's such a scary feeling not to be able to trust that your own body is going to take care of you. You don't even know how much you trust that, how much the very core of your being trusts that until it's taken away. As I sit here writing this, I'm thinking about how my body has gone off and done it's own thing, and really, with my depression, my mind has too. And so what does that leave me with? It leaves me with my spirit. That's all I have. That's all any of us has. Maybe I've been given a gift in seeing that. It's such a helpless feeling, but that's where the growth can happen, right? Down there in the dirt that is the clay of my body and mind that have crumbled around me. We have no control, just an illusion of control. It's so scary - but it's true anyway - fear or no fear. That's when surrender can be so liberating. I'm learning. I'm trying to learn. It's just so hard. It's so hard.
Am I rambling?
There's a lot going on in my head today. I just haven't been feeling well the last week or so and it's really bumming me out. I could go into the details, but I'll spare you today. I don't know whether I'm having a UC flare or if the pouchitis is no longer being treated by the Cipro, or what. What I do know for sure is that I need another dilation. God damn it. So I'll call Dr. T tomorrow and see if she can get me in on Friday. My heart just sinks thinking about that. Really. Ugh. Yes, I know - I know - I could remind myself that my last dilation was June 19th and see how far I've come? Yep. I know. But today I'm disappointed and tired. I don't feel like convincing myself to be happy about it today. I don't feel like being happy that I have to finagle my work schedule so I can go to the hospital, be hooked up to an IV, stripped to my skivvies and have dilaters stuck up my rectum, yelling in pain that I vaguely remember after the drugs wear off. I just don't feel up to it today.
Yeah, and then tomorrow is another of my painful anniversary days. My would be due date. It represents what would have been Harper's first birthday. There's just so much wrapped in that, I can't even go there. I really can't.
I'm just so tired tonight. The kind of tired you get when something's wearing out your body and you have no control over it. I've been going to the bathroom so much this weekend, and it's been kind of painful. I forgot what that was like. And of course for me, with pain comes fear. And I just want to curl up in a ball and sleep it away and wake up all better. But that doesn't really happen for me.
My body has betrayed me. It's such a scary feeling not to be able to trust that your own body is going to take care of you. You don't even know how much you trust that, how much the very core of your being trusts that until it's taken away. As I sit here writing this, I'm thinking about how my body has gone off and done it's own thing, and really, with my depression, my mind has too. And so what does that leave me with? It leaves me with my spirit. That's all I have. That's all any of us has. Maybe I've been given a gift in seeing that. It's such a helpless feeling, but that's where the growth can happen, right? Down there in the dirt that is the clay of my body and mind that have crumbled around me. We have no control, just an illusion of control. It's so scary - but it's true anyway - fear or no fear. That's when surrender can be so liberating. I'm learning. I'm trying to learn. It's just so hard. It's so hard.
Am I rambling?
Friday, August 14, 2009
I'm alive
August 14, 2009
Today I need to purge some of the memories that are stuck in my head.
Just a little background for those of you who may have lost track or didn't know: I was hospitalized on March 24, 2008 for what they found out a few days after that was a severe case of ulcerative colitis. I was 4 months pregnant at that time. I gave still birth to our daughter Harper on April 22, 2008 at five months pregnant. And here is where the memories are particularly pestering me today: April 25, 2008.
When we lost Harper, I had a drastic dip in the number of bowel movements I was having a day, which was a good thing. With the IV steroids, assacol, cyclosporine, and mesalamine we managed to get my number of bowel movements to about 10-15 a day. And then the 24-hours preceding our knowledge that Harper's heart had stopped beating, my number went down to either three or four - I don't remember which. So on the morning of April 25th, Dr. C came into the room to check on me:
"You still have four bowel movements?"
"Well, I had a few more. I think I've had seven in the last twenty-four hours," I said, reluctantly hopeful.
"Seven still okay. You want to go home today?" he asked with a big smile on his face.
"Yes," I didn't hesitate. "Really? I can go home?"
"Yeah. Your bowel movements have slowed down for a couple days now. You can go home today."
I couldn't believe those words. I was prepared to stay in the hospital until I delivered Harper, which was supposed to be in August. Really, what I was prepared for and was expecting to happen was to die there. The thought that I could go home was this unbelievable dream to me. Home meant health and comfort and peace and happiness to me (or so I thought. I wasn't prepared for the sadness and fear - but that's a different blog for a different day).
"So even though my bowel movements are still soupy like diarrhea and there's a little blood in there, I can go home?" He told me I could. And so everything was set in motion. I didn't know how long it would take to get everything ready. All the teams still had to see me and give their okay and write scripts for me to take home with me. I had been able to eat a soft diet for the last two or three days, so they knew I would be able to nourish myself. The plan was to send me home on a high dose of oral steroids (and a bunch of other meds) and hope that that controlled my UC (I still had my colon at this time mind you).
It all happened so quickly for me. I had been nourished by the TPN bag through my PIC line for the last month almost. They came in and unhooked the TPN and pulled the PIC line from my arm. But then something odd - they told me they wanted to give me another blood transfusion because my numbers were a little low and they wanted to send me home on solid footing. Looking back now I just don't know about that - really? You're going to give me a blood transfusion and then I'm out the door in less than an hour? If I need a blood transfusion today, isn't there something still very wrong?
And then there was the matter of Harper. They had told us we could take all the time we needed in deciding what to do about Harper, but I couldn't leave until I knew the arrangements had all been made. "Please Jeremy. Can you take care of that? Can you find a funeral home to have her cremated? I can't leave here knowing she's there in the morgue and that I haven't taken care of her." He told me he would take care of it, and he did. Before we left he had everything set up for the funeral home to come and get her and have her cremated.
We were given our discharge instructions, prescriptions for too many medications for me to wrap my head around (especially because my mind was still pretty foggy - I was confused a lot). Mom and Sara had bought me some clothes to wear that fit me in my larger state (carrying 100 pounds of fluid). Here's another thing that gets me. When I asked Dr. C how long it would be before I could go back to work he said, "A week." "What?! I can't even walk," I said to him. He asked if I wanted two weeks. I almost broke down in tears. There was no way. I really could hardly walk. I felt this incredible pressure from that to be better when I wasn't. Dr. A came in and I asked her if that was feasible. "No. You'll need much longer than that. How much time do you want? A month? Six weeks?" I breathed a sigh of relief. That I could wrap my mind around. I could get stronger then.
So I was carrying 100 pounds of fluid at this time, right? And people kept telling me it would come off, but no one told me how long it would take for it to come off. So I prepared myself mentally to be wearing XXL clothes for the next year, exercising and working out diligently, and to get horrified looks from friends who hadn't seen me in the past few weeks because I was almost twice the person I had been before. I was prepared. I was going home though, so none of that mattered.
The nurse wheeled me around the unit so I could say good-bye to all the other staff who had helped me over the last month. I sobbed. I sobbed all the way out to the car at the joy in leaving the hospital and the pain of leaving my daughter there. I was a mess, plain and simple.
We got home and Mom and Sara went to get groceries and Jeremy went to pick up my medications. Jeremy put together a bench in the back yard for me to sit on because I couldn't get in and out of any of the other chairs because of all the fluid. And my skin hurt so badly. I was so weak I could hardly walk. I walked my tiny four inch steps around the dining room table. I tried walking in the back yard, careful not to lose my balance by looking up when I walked. And then I started urinating - God bless the lasiks (meds that make you pee). I was weighing myself every day (as they did in the hospital). I kid you not, I urinated off 13 pounds of fluid one day. Just like that.
But things got bad. I had a fever the second night. The third night my bowel movements started increasing again and turned to pure water, like someone turned a faucet on. And there was still blood, but the amount of blood was increasing. The blood started coming out in clots. The fourth night we were home the worrying got to be too much.
"I think we should go in Abby. They said if the number of stools increased or you ran a fever you should go in," Jeremy said with nothing but fear on his face. No sooner had I agreed with him, that it was time to go to the ER, when I started to black out. I was losing consciousness. He called an ambulance. The ambulance came. The guys strapped me to the gurney, and then I was without Jeremy in the back of the ambulance.
It was the night of April 29th. I passed out in the hospital bathroom with Jeremy there. I was passing blood clots. I had nothing in me. I was going to die, I just knew it. They wouldn't let me leave the room so I had to go on the commode next to the bed and again as I passed the blood clots I blacked out. It felt so good just to let go. I couldn't hold on any more. But then I heard Jeremy's voice yelling my name. I could feel people holding onto my limbs and trying to lift me, but I couldn't respond. And I just wanted to sleep. And then I could see again. I saw Jeremy and the nurse lifting me onto the bed. "What happened?" I asked. Jeremy told me I passed out on the commode. They wouldn't let me leave the bed any more. So they kept having to bring the bed pan because my diarrhea was getting worse. And I filled the bed pan with blood and stool until it overflowed onto the sheets. And then my whole abdomen began to hurt. I moaned and begged for help. "Please help. Please it hurts. Please make the pain stop!" They told me I was in pain because my colon was so distended. I was writhing in pain. "Oh it hurts! It hurts!" Finally the medication they gave me subdued the pain and made me sleepy.
I spent 36 hours there in the ER. I woke up at one point to find my dad there. My potassium was low so they gave me an infusion, but it burned. I yelled for the nurse because my veins felt like they were on fire. The ER was busy, so it was Jeremy who was helping me with the bed pan. Finally I got up to my room, out of the ER. I think it was Dr. G himself who came and saw me then, not just one of his students or residents. He said that the dose of oral steroids was not strong enough to treat the UC. They put me back on a high dose of IV steroids. But things didn't get better for me. Dr. V came to see me every day to talk about surgery. And finally, ultimately, on May 8, 2008 my colon was removed. I think I was discharged to home the second time on May 14, 2008.
And then there was the hospitalization for my second surgery in October. And then there were the nightly IV's at home for two months and the home health nurse. And then the hospitalization for my PIC line infection/UTI. And then there was the hospitalization for my peristomal skin infection that ultimately led to my third surgery in December. And then there were the 10+ weekly dilations. And then there was my hospitalization for the flu. And there was blah, blah, blah.
So writing about all this, I'm feeling like I don't need to be so hard on myself for not being over all this. Seriously Abby. You are not over this and you shouldn't be. You had loss upon loss upon complication. You are still healing, and that's okay.
And while I really needed to purge these things, I feel like I can't end this blog with the whole thing being so negative. Do you know that Jeremy and I ran six miles last Sunday together? Do you know we're running six miles this weekend too? Do you know how much I love my husband and my family and my dog and my home and my job? And as I've been reminded many times, I'm alive. Yes I am. I'm alive.
So, sorry to be such a drag, but I really did need to just get it all out (again). This probably won't be the last time either.
Today I need to purge some of the memories that are stuck in my head.
Just a little background for those of you who may have lost track or didn't know: I was hospitalized on March 24, 2008 for what they found out a few days after that was a severe case of ulcerative colitis. I was 4 months pregnant at that time. I gave still birth to our daughter Harper on April 22, 2008 at five months pregnant. And here is where the memories are particularly pestering me today: April 25, 2008.
When we lost Harper, I had a drastic dip in the number of bowel movements I was having a day, which was a good thing. With the IV steroids, assacol, cyclosporine, and mesalamine we managed to get my number of bowel movements to about 10-15 a day. And then the 24-hours preceding our knowledge that Harper's heart had stopped beating, my number went down to either three or four - I don't remember which. So on the morning of April 25th, Dr. C came into the room to check on me:
"You still have four bowel movements?"
"Well, I had a few more. I think I've had seven in the last twenty-four hours," I said, reluctantly hopeful.
"Seven still okay. You want to go home today?" he asked with a big smile on his face.
"Yes," I didn't hesitate. "Really? I can go home?"
"Yeah. Your bowel movements have slowed down for a couple days now. You can go home today."
I couldn't believe those words. I was prepared to stay in the hospital until I delivered Harper, which was supposed to be in August. Really, what I was prepared for and was expecting to happen was to die there. The thought that I could go home was this unbelievable dream to me. Home meant health and comfort and peace and happiness to me (or so I thought. I wasn't prepared for the sadness and fear - but that's a different blog for a different day).
"So even though my bowel movements are still soupy like diarrhea and there's a little blood in there, I can go home?" He told me I could. And so everything was set in motion. I didn't know how long it would take to get everything ready. All the teams still had to see me and give their okay and write scripts for me to take home with me. I had been able to eat a soft diet for the last two or three days, so they knew I would be able to nourish myself. The plan was to send me home on a high dose of oral steroids (and a bunch of other meds) and hope that that controlled my UC (I still had my colon at this time mind you).
It all happened so quickly for me. I had been nourished by the TPN bag through my PIC line for the last month almost. They came in and unhooked the TPN and pulled the PIC line from my arm. But then something odd - they told me they wanted to give me another blood transfusion because my numbers were a little low and they wanted to send me home on solid footing. Looking back now I just don't know about that - really? You're going to give me a blood transfusion and then I'm out the door in less than an hour? If I need a blood transfusion today, isn't there something still very wrong?
And then there was the matter of Harper. They had told us we could take all the time we needed in deciding what to do about Harper, but I couldn't leave until I knew the arrangements had all been made. "Please Jeremy. Can you take care of that? Can you find a funeral home to have her cremated? I can't leave here knowing she's there in the morgue and that I haven't taken care of her." He told me he would take care of it, and he did. Before we left he had everything set up for the funeral home to come and get her and have her cremated.
We were given our discharge instructions, prescriptions for too many medications for me to wrap my head around (especially because my mind was still pretty foggy - I was confused a lot). Mom and Sara had bought me some clothes to wear that fit me in my larger state (carrying 100 pounds of fluid). Here's another thing that gets me. When I asked Dr. C how long it would be before I could go back to work he said, "A week." "What?! I can't even walk," I said to him. He asked if I wanted two weeks. I almost broke down in tears. There was no way. I really could hardly walk. I felt this incredible pressure from that to be better when I wasn't. Dr. A came in and I asked her if that was feasible. "No. You'll need much longer than that. How much time do you want? A month? Six weeks?" I breathed a sigh of relief. That I could wrap my mind around. I could get stronger then.
So I was carrying 100 pounds of fluid at this time, right? And people kept telling me it would come off, but no one told me how long it would take for it to come off. So I prepared myself mentally to be wearing XXL clothes for the next year, exercising and working out diligently, and to get horrified looks from friends who hadn't seen me in the past few weeks because I was almost twice the person I had been before. I was prepared. I was going home though, so none of that mattered.
The nurse wheeled me around the unit so I could say good-bye to all the other staff who had helped me over the last month. I sobbed. I sobbed all the way out to the car at the joy in leaving the hospital and the pain of leaving my daughter there. I was a mess, plain and simple.
We got home and Mom and Sara went to get groceries and Jeremy went to pick up my medications. Jeremy put together a bench in the back yard for me to sit on because I couldn't get in and out of any of the other chairs because of all the fluid. And my skin hurt so badly. I was so weak I could hardly walk. I walked my tiny four inch steps around the dining room table. I tried walking in the back yard, careful not to lose my balance by looking up when I walked. And then I started urinating - God bless the lasiks (meds that make you pee). I was weighing myself every day (as they did in the hospital). I kid you not, I urinated off 13 pounds of fluid one day. Just like that.
But things got bad. I had a fever the second night. The third night my bowel movements started increasing again and turned to pure water, like someone turned a faucet on. And there was still blood, but the amount of blood was increasing. The blood started coming out in clots. The fourth night we were home the worrying got to be too much.
"I think we should go in Abby. They said if the number of stools increased or you ran a fever you should go in," Jeremy said with nothing but fear on his face. No sooner had I agreed with him, that it was time to go to the ER, when I started to black out. I was losing consciousness. He called an ambulance. The ambulance came. The guys strapped me to the gurney, and then I was without Jeremy in the back of the ambulance.
It was the night of April 29th. I passed out in the hospital bathroom with Jeremy there. I was passing blood clots. I had nothing in me. I was going to die, I just knew it. They wouldn't let me leave the room so I had to go on the commode next to the bed and again as I passed the blood clots I blacked out. It felt so good just to let go. I couldn't hold on any more. But then I heard Jeremy's voice yelling my name. I could feel people holding onto my limbs and trying to lift me, but I couldn't respond. And I just wanted to sleep. And then I could see again. I saw Jeremy and the nurse lifting me onto the bed. "What happened?" I asked. Jeremy told me I passed out on the commode. They wouldn't let me leave the bed any more. So they kept having to bring the bed pan because my diarrhea was getting worse. And I filled the bed pan with blood and stool until it overflowed onto the sheets. And then my whole abdomen began to hurt. I moaned and begged for help. "Please help. Please it hurts. Please make the pain stop!" They told me I was in pain because my colon was so distended. I was writhing in pain. "Oh it hurts! It hurts!" Finally the medication they gave me subdued the pain and made me sleepy.
I spent 36 hours there in the ER. I woke up at one point to find my dad there. My potassium was low so they gave me an infusion, but it burned. I yelled for the nurse because my veins felt like they were on fire. The ER was busy, so it was Jeremy who was helping me with the bed pan. Finally I got up to my room, out of the ER. I think it was Dr. G himself who came and saw me then, not just one of his students or residents. He said that the dose of oral steroids was not strong enough to treat the UC. They put me back on a high dose of IV steroids. But things didn't get better for me. Dr. V came to see me every day to talk about surgery. And finally, ultimately, on May 8, 2008 my colon was removed. I think I was discharged to home the second time on May 14, 2008.
And then there was the hospitalization for my second surgery in October. And then there were the nightly IV's at home for two months and the home health nurse. And then the hospitalization for my PIC line infection/UTI. And then there was the hospitalization for my peristomal skin infection that ultimately led to my third surgery in December. And then there were the 10+ weekly dilations. And then there was my hospitalization for the flu. And there was blah, blah, blah.
So writing about all this, I'm feeling like I don't need to be so hard on myself for not being over all this. Seriously Abby. You are not over this and you shouldn't be. You had loss upon loss upon complication. You are still healing, and that's okay.
And while I really needed to purge these things, I feel like I can't end this blog with the whole thing being so negative. Do you know that Jeremy and I ran six miles last Sunday together? Do you know we're running six miles this weekend too? Do you know how much I love my husband and my family and my dog and my home and my job? And as I've been reminded many times, I'm alive. Yes I am. I'm alive.
So, sorry to be such a drag, but I really did need to just get it all out (again). This probably won't be the last time either.
Wednesday, August 12, 2009
Enjoy
August 12, 2009
Another evening at home alone. And that's fine. The silence is good. I went out to the back yard and sprawled out on the hammock. I was looking up at the sky, swinging back and forth ever so slightly - just thinking. There was a storm heading west over me. The breeze turned cool and the darkness in the sky started to move. I felt one large cold drop of rain fall onto the top of my foot.
Why, why, why? What does it all mean? What's supposed to happen now? I was ready to die. I really was. I even said, "I've lived a good life. I've done my best to love people and if this is my time, I'm at peace about dying. I'm really not afraid." So that's it huh? These random things happen to us, mix us up, swirl us around, and then spit us out and we're just supposed to move on? I just don't get it. Oh Abby! You're doing it again! You aren't just being satisfied with life. There doesn't always have to be more. You're missing out on the right here and right now! Let go. Let go right now and just feel that drop on your foot. Feel it. Be present in your life Abby. Be here. Enjoy what you have now. Yeah. Enjoy.
Another evening at home alone. And that's fine. The silence is good. I went out to the back yard and sprawled out on the hammock. I was looking up at the sky, swinging back and forth ever so slightly - just thinking. There was a storm heading west over me. The breeze turned cool and the darkness in the sky started to move. I felt one large cold drop of rain fall onto the top of my foot.
Why, why, why? What does it all mean? What's supposed to happen now? I was ready to die. I really was. I even said, "I've lived a good life. I've done my best to love people and if this is my time, I'm at peace about dying. I'm really not afraid." So that's it huh? These random things happen to us, mix us up, swirl us around, and then spit us out and we're just supposed to move on? I just don't get it. Oh Abby! You're doing it again! You aren't just being satisfied with life. There doesn't always have to be more. You're missing out on the right here and right now! Let go. Let go right now and just feel that drop on your foot. Feel it. Be present in your life Abby. Be here. Enjoy what you have now. Yeah. Enjoy.
Tuesday, August 11, 2009
Patience Abby
August 11, 2009
There is a homemade blueberry cobbler sitting in my kitchen cooling at this very moment. Can you smell it? Oh the warm sugary scent and the sight of those fresh, plump blueberries peeking out from under the golden top; I can't wait! Rosie Thomas is singing in the background. Jeremy's off at work. Django's sleeping. I'm home by myself. Myself. Me.
I need some time, some space for me right now. To breath. To think. To be. I've been almost frantic for a while now, feeling like I needed to make something major happen, feeling desperate for life to be different than it was before. (God I hate that there is a before.) How can I feel so changed and everything, all the little details of life, still be the same? It's just not right.
But this is where I need to pause and to breath. I still get lost almost every day in my memories. They sneak up on me and wrap their fingers around my mouth. I'm frozen in the feeling of it. The feeling of being mute in a body that is crying out for help. Of being terrified of the continuing pain. The feeling of resignation that I will be dying soon.
My mind needs some time. I need some space to let myself be with it all. It's not over, this healing process. Much as I wish it was, it is not. And that's okay. I'll give myself what I need. Patience Abby. Patience.
There is a homemade blueberry cobbler sitting in my kitchen cooling at this very moment. Can you smell it? Oh the warm sugary scent and the sight of those fresh, plump blueberries peeking out from under the golden top; I can't wait! Rosie Thomas is singing in the background. Jeremy's off at work. Django's sleeping. I'm home by myself. Myself. Me.
I need some time, some space for me right now. To breath. To think. To be. I've been almost frantic for a while now, feeling like I needed to make something major happen, feeling desperate for life to be different than it was before. (God I hate that there is a before.) How can I feel so changed and everything, all the little details of life, still be the same? It's just not right.
But this is where I need to pause and to breath. I still get lost almost every day in my memories. They sneak up on me and wrap their fingers around my mouth. I'm frozen in the feeling of it. The feeling of being mute in a body that is crying out for help. Of being terrified of the continuing pain. The feeling of resignation that I will be dying soon.
My mind needs some time. I need some space to let myself be with it all. It's not over, this healing process. Much as I wish it was, it is not. And that's okay. I'll give myself what I need. Patience Abby. Patience.
Saturday, August 8, 2009
Swimming in the waves
August 8, 2009
"Do you have children?" I saw Jeremy look at me, deferring to me to handle this. There was a pause. "No," I said. And we moved on in conversation. Actually, I purposefully directed the conversation back at her. This was a birthday party after all, a little girl's birthday party. She didn't need to know about Harper. And I guess my instincts served me well. My stock answer to that question is, "None living." But then that always leads to a sad look in the other person's eyes. Maybe that's the end of the conversation, maybe they ask more, but last night I didn't want to deal with that. Still I'm left to deal with the tiniest bit of feeling that I betrayed my daughter - I didn't acknowledge her. Or that I'm denying myself a title that I fought hard for and don't get to wear: mother.
We were the childless couple last night. Did we stick out like a sore thumb, or was it just me? I don't know. I enjoyed myself though. I really did. I loved being around all that family, all those little ones, laughing, playing, pretending. I held my share of babies, kissed enough soft precious baby-scented cheeks and tops of heads. Jeremy and I would engage in our separate conversations and then drift back to each other briefly. He would put his hand on my back, I would rest my head on his shoulder. Jeremy made a little friend, 13 months old who kept coming to him with his arms up to be held by him. It made me laugh.
I didn't cry. Maybe I carried a little sadness with me, but I think I did well. I come away from situations like that not being able to gage my interactions with people. I have this fear that I'm going to be the wet blanket - that I exude this sorrow or something that people won't want to be around. Do others see me that way? I just want to be myself, authentic, but do I over-compensate then? I really don't know. It's all so hard. But it's life. It's what we have to navigate, Jeremy and I together. And as the waves push us around a little, we reach out and find each other, steady each other, and then go back out to try to swim again.
"Do you have children?" I saw Jeremy look at me, deferring to me to handle this. There was a pause. "No," I said. And we moved on in conversation. Actually, I purposefully directed the conversation back at her. This was a birthday party after all, a little girl's birthday party. She didn't need to know about Harper. And I guess my instincts served me well. My stock answer to that question is, "None living." But then that always leads to a sad look in the other person's eyes. Maybe that's the end of the conversation, maybe they ask more, but last night I didn't want to deal with that. Still I'm left to deal with the tiniest bit of feeling that I betrayed my daughter - I didn't acknowledge her. Or that I'm denying myself a title that I fought hard for and don't get to wear: mother.
We were the childless couple last night. Did we stick out like a sore thumb, or was it just me? I don't know. I enjoyed myself though. I really did. I loved being around all that family, all those little ones, laughing, playing, pretending. I held my share of babies, kissed enough soft precious baby-scented cheeks and tops of heads. Jeremy and I would engage in our separate conversations and then drift back to each other briefly. He would put his hand on my back, I would rest my head on his shoulder. Jeremy made a little friend, 13 months old who kept coming to him with his arms up to be held by him. It made me laugh.
I didn't cry. Maybe I carried a little sadness with me, but I think I did well. I come away from situations like that not being able to gage my interactions with people. I have this fear that I'm going to be the wet blanket - that I exude this sorrow or something that people won't want to be around. Do others see me that way? I just want to be myself, authentic, but do I over-compensate then? I really don't know. It's all so hard. But it's life. It's what we have to navigate, Jeremy and I together. And as the waves push us around a little, we reach out and find each other, steady each other, and then go back out to try to swim again.
Wednesday, August 5, 2009
As stable as can be?
August 5, 2009
Have you noticed a change in my "voice" the last little bit? I certainly have. I think I was unfairly blaming it on August, but truly, I believe there is another culprit at play here. My good old friend depression. Under the direction and care of my psychiatrist, Dr. N, we had agreed I was in a good enough place to stop taking my anti-depressants (because they do have side effects that aren't so fun, but are the lesser of two evils sometimes). It took me a while to ween myself off them as I get physically ill if I stop them cold turkey. I finished my last dose just a couple of days after we returned from San Francisco. I swear to you, it's like clockwork too. Within two weeks my crying episodes have begun, just as within two weeks of beginning the medication, my crying episodes ended.
I do consider myself a tender-hearted person (smile), but not to this extent. I totally understand where the saying, "at the drop of a hat" came from, because when I'm in this state, I can feel so badly for the smallest little things that they bring me to tears: "Oh, you dropped your hat? [tears begin to trickle] I'm so sorry [sob]." When the little things affect me that way, imagine how August and I get along. Not so well.
So before I drive my husband crazy with searching for life-altering solutions to my sadness, I'm going to give the meds another try. This time I'm not going to wait for the thoughts that the only thing that will cure it all is to end my life. At least I've learned that lesson (hopefully)! You just watch too. Two weeks from today, I'd place money on the fact that I'm back in a positive, stable place emotionally (or at least as stable as I can be in my circumstances - I guess I should qualify it with that, right?).
Have you noticed a change in my "voice" the last little bit? I certainly have. I think I was unfairly blaming it on August, but truly, I believe there is another culprit at play here. My good old friend depression. Under the direction and care of my psychiatrist, Dr. N, we had agreed I was in a good enough place to stop taking my anti-depressants (because they do have side effects that aren't so fun, but are the lesser of two evils sometimes). It took me a while to ween myself off them as I get physically ill if I stop them cold turkey. I finished my last dose just a couple of days after we returned from San Francisco. I swear to you, it's like clockwork too. Within two weeks my crying episodes have begun, just as within two weeks of beginning the medication, my crying episodes ended.
I do consider myself a tender-hearted person (smile), but not to this extent. I totally understand where the saying, "at the drop of a hat" came from, because when I'm in this state, I can feel so badly for the smallest little things that they bring me to tears: "Oh, you dropped your hat? [tears begin to trickle] I'm so sorry [sob]." When the little things affect me that way, imagine how August and I get along. Not so well.
So before I drive my husband crazy with searching for life-altering solutions to my sadness, I'm going to give the meds another try. This time I'm not going to wait for the thoughts that the only thing that will cure it all is to end my life. At least I've learned that lesson (hopefully)! You just watch too. Two weeks from today, I'd place money on the fact that I'm back in a positive, stable place emotionally (or at least as stable as I can be in my circumstances - I guess I should qualify it with that, right?).
Tuesday, August 4, 2009
My bitter enemy
August 4, 2009
I talked with my brother last night on the phone. Hmm . . . "talked" isn't exactly an accurate description of what transpired. I did a lot of crying. He did a lot of listening. I told him I still feel so alone in all of this. I think the need to talk about it all is growing from that place of feeling alone.
On my drive home from work yesterday I was suddenly back at NW Hospital, there in the bathroom attached to my room. I could see the color of the floor and all the tiny little flecks of pattern. I could see the one tiny red fleck that was in the shape of a heart. I focused so much of my attention on that tiny little fleck when I was in that bathroom. It was all I could do. Thinking about it now, I can physically feel it all again. I can feel the weight of the fluid beginning to collect in my body. I can feel the pain in my skin as it stretched. I can feel Harper moving inside of me, fluttering every now and then, reminding me why I was fighting so hard. I can see myself lifting my legs out of the bed with urgency, reaching for the IV pole to drag it along with me, barely making it to the bathroom. I can feel my stomach cramping up as I pushed, the gooseflesh covering my body. I can feel the stool passing through me. I can see the blood in the collection hats in the toilet. I can see myself writing the time on a scrap piece of paper where the list of times were collecting and then climbing back into the bed, pulling my legs up, closing my eyes and trying to sleep, my body exhausted, but knowing that in another 20 minutes, I'd be doing the same thing again.
And that was it. That was all my mind thought about. That was all I could think about. My body had nothing. Everything was going through me, right through me. There was no energy to think about anything else. Except the fear. But even the fear was something I had resigned myself to. I thought I would be there for months, if I ever left. It was March. I wasn't due till August. I tried to imagine her surviving it all. I had visions of her as a little girl - it was what I held on to desperately. I was fighting. Do you know how hard I fought?! No. Most people don't know. I fought so hard for my little girl. I don't know. Maybe it doesn't sound so hard, laying in bed and then going to the bathroom. Big deal, right? I just don't know if you can imagine how hard it was though. Have you ever had the flu? Where you run to the bathroom? Imagine doing that 17 times a day. Imagine blood coming out when you do it. Imagine a baby growing inside of you.
And now. Now I have to let go of those visions of her that I held so tight to. Those visions that got me through. The little girl with the loose brown curls in a karate uniform running around the house with her bare little feet, showing off for mommy and daddy. She was fully flesh in my mind - flesh and spirit and laughter and personality. I have to let go of what kept me going. How do I do that? She was why I held on. Yes, as time has passed my grip has loosened, but when your starting place is a place of holding on for dear life, it's hard to let go.
Oh August. Maybe some day we'll be friends, but today you are my bitter enemy.
I talked with my brother last night on the phone. Hmm . . . "talked" isn't exactly an accurate description of what transpired. I did a lot of crying. He did a lot of listening. I told him I still feel so alone in all of this. I think the need to talk about it all is growing from that place of feeling alone.
On my drive home from work yesterday I was suddenly back at NW Hospital, there in the bathroom attached to my room. I could see the color of the floor and all the tiny little flecks of pattern. I could see the one tiny red fleck that was in the shape of a heart. I focused so much of my attention on that tiny little fleck when I was in that bathroom. It was all I could do. Thinking about it now, I can physically feel it all again. I can feel the weight of the fluid beginning to collect in my body. I can feel the pain in my skin as it stretched. I can feel Harper moving inside of me, fluttering every now and then, reminding me why I was fighting so hard. I can see myself lifting my legs out of the bed with urgency, reaching for the IV pole to drag it along with me, barely making it to the bathroom. I can feel my stomach cramping up as I pushed, the gooseflesh covering my body. I can feel the stool passing through me. I can see the blood in the collection hats in the toilet. I can see myself writing the time on a scrap piece of paper where the list of times were collecting and then climbing back into the bed, pulling my legs up, closing my eyes and trying to sleep, my body exhausted, but knowing that in another 20 minutes, I'd be doing the same thing again.
And that was it. That was all my mind thought about. That was all I could think about. My body had nothing. Everything was going through me, right through me. There was no energy to think about anything else. Except the fear. But even the fear was something I had resigned myself to. I thought I would be there for months, if I ever left. It was March. I wasn't due till August. I tried to imagine her surviving it all. I had visions of her as a little girl - it was what I held on to desperately. I was fighting. Do you know how hard I fought?! No. Most people don't know. I fought so hard for my little girl. I don't know. Maybe it doesn't sound so hard, laying in bed and then going to the bathroom. Big deal, right? I just don't know if you can imagine how hard it was though. Have you ever had the flu? Where you run to the bathroom? Imagine doing that 17 times a day. Imagine blood coming out when you do it. Imagine a baby growing inside of you.
And now. Now I have to let go of those visions of her that I held so tight to. Those visions that got me through. The little girl with the loose brown curls in a karate uniform running around the house with her bare little feet, showing off for mommy and daddy. She was fully flesh in my mind - flesh and spirit and laughter and personality. I have to let go of what kept me going. How do I do that? She was why I held on. Yes, as time has passed my grip has loosened, but when your starting place is a place of holding on for dear life, it's hard to let go.
Oh August. Maybe some day we'll be friends, but today you are my bitter enemy.
Sunday, August 2, 2009
Carpe-freakin'-Diem
August 2, 2009
It hit me yesterday that it's August. And August has been heavy on my mind ever since, this extra weight inside my head, like lead.
At 2:15 a.m. this morning I got a phone call. It was Jeremy. He had just finished playing at the Red Room with the Low Ones and couldn't start the truck. He thought the battery had died. "No problem sweetie, I'm on my way." I threw on some clothes, searched the usual suspect places for jumper cables which I could not find (because we don't own them - what?!), grabbed baking soda and some water at Jeremy's instruction and headed out. I never thought I'd thank God for Walmart, but at 2:30 in the morning I was doing so. I ran in and bought some jumper cables and got downtown all within about 25 minutes. It was the battery and all is well now.
This morning we went out to run some more errands, one of which was to buy a new truck battery. I had Jeremy's Adam Again CD in the player. A line had caught my attention the day before as he had it playing. But different lines were catching my attention now: "What can you say, the impossible happens? What can you sell for? What can you live without?" Oh and the cello in the song. The cello will forever be an instrument that strikes the very core of my being when I hear it. It's August. The tears started pouring.
I put my face in my hands and let go. "I'm just so sad Jeremy. It's August." I think it took him a moment to follow my train of thought, after all this had just come out nowhere. We were just running errands for goodness sakes. "We should be getting ready for her first birthday," more sobs. "I would make the invitations myself. And the party favors, I would make the party favors myself too. And I'd take pictures of her eating her first birthday cake. I don't want to be sad about this. I want to be over her. Why can't I be over Harper?"
"Oh Abby, we won't ever be over her. And there's more than sadness there too. It's not just sadness," he reminded me. And it's not. But today it is. And I cried some more. August 17th. That was my due date.
It's not out of my system. I'm starting to feel a little troubled about that too. Should it be? Should I be better than I am now? I have what they call complicated grief. There were so many losses, one on top of the next, piling up like bad garbage. Wish I could just toss it all into the can and be done with it.
Getting up in the middle of the night to help Jeremy brought up more stuff too. This time I was on the other end, and I was so glad. I was so happy to be able to go help him when he needed me. But we talked today about the other phone calls in the middle of the night. There was one night in particular that I was scared and alone in the hospital. I told myself I was having a panic attack, I just needed to ride it out, but I couldn't. I still had Harper with me then. They were pumping me full of all kinds of drugs, but if there were ones I could avoid taking, I still did because of her. Seems so silly to me now. They offered me Ativan, but I said no at first. I was so scared. I thought I was going to die. I couldn't lay down. I couldn't breath when I laid down. I was going to jump out of my skin.
"What can I do to help you?" the sweet nurse asked as she sat next to me, rubbing my back. I was sobbing.
"I need my husband, but I don't want to call him. He needs his rest." I could just ride it out. I could. Surely I would get so tired that I would have to fall asleep. But when the nurse left my room after sitting with me for nearly an hour, I couldn't stand it. I was so scared. Finally I agreed to take the Ativan. But the Ativan didn't kick in right away, so I called Jeremy. I woke him from a dead sleep. The nights that he went home to sleep, he slept with the phone on the pillow, which explains that why to this day when I get up to go to the bathroom in the night he jumps up saying, "What's wrong? Are you okay?"
He came to be with me that night. And bless his heart, by the time he got there the medication had kicked in and I was loopy and groggy and hardly knew he was there. He told me there were other times the nurses called him in the night too. I didn't know that. I didn't know.
As I sit here writing this, I want to go back to that time. It was a living hell and I'm crazy for saying it, I know, but I do. I want to go back to that time because then I could feel Harper moving inside of me. She was still alive.
Boy, do I have issues? There's something in me lately that feels like I need to keep talking about this. I need to keep telling people what happened. I wonder if it's time to join a support group? I need to purge. There's still more in there. Is this normal? Don't get the wrong idea either okay? Because when I first started blogging, these thoughts and feelings were shackled to me everywhere I went. They aren't any more. I fly free much of the time. But this is my way of purging. So you get this distorted view of who I am. Oh Abby, it is what it is, let go.
Okay. So I need to get myself out of this funk. I can do this. I can. I'm going to start by changing the music I'm listening to as I write this. Certain music just allows me to wallow in the gunk. So let's listen to Dig: "The earth is hard, the treasure fine." "There was a time I might have surrendered, but not now." And yes, the words are better, but how about changing the whole mood Abby? Yes. That's what I need.
So here's my little pep talk to get me out of the funk:
This is the beauty of life Abby. This is it. The pain, the heartache, all of it. It has given your life so much abundance. And you know you can feel that there's something amazing right around the corner. Every day you wake up ready for it. It's going to happen. And you are strong! You are strong and can endure! Look at the love around you. What more could you ask for? Nothing. There is nothing more to this life than love. That's it! And you've got it! You are a blessed and lucky woman. Don't ever believe otherwise.
And colon-schmolin! Who needs a colon anyway? You don't! Look at you! You're running, you're doing yoga, (you're eating granola) - you are living the life you want to live. What a gift?! You are alive for crying out loud! ALIVE! Carpe-freakin'-Diem! Okay?!
It hit me yesterday that it's August. And August has been heavy on my mind ever since, this extra weight inside my head, like lead.
At 2:15 a.m. this morning I got a phone call. It was Jeremy. He had just finished playing at the Red Room with the Low Ones and couldn't start the truck. He thought the battery had died. "No problem sweetie, I'm on my way." I threw on some clothes, searched the usual suspect places for jumper cables which I could not find (because we don't own them - what?!), grabbed baking soda and some water at Jeremy's instruction and headed out. I never thought I'd thank God for Walmart, but at 2:30 in the morning I was doing so. I ran in and bought some jumper cables and got downtown all within about 25 minutes. It was the battery and all is well now.
This morning we went out to run some more errands, one of which was to buy a new truck battery. I had Jeremy's Adam Again CD in the player. A line had caught my attention the day before as he had it playing. But different lines were catching my attention now: "What can you say, the impossible happens? What can you sell for? What can you live without?" Oh and the cello in the song. The cello will forever be an instrument that strikes the very core of my being when I hear it. It's August. The tears started pouring.
I put my face in my hands and let go. "I'm just so sad Jeremy. It's August." I think it took him a moment to follow my train of thought, after all this had just come out nowhere. We were just running errands for goodness sakes. "We should be getting ready for her first birthday," more sobs. "I would make the invitations myself. And the party favors, I would make the party favors myself too. And I'd take pictures of her eating her first birthday cake. I don't want to be sad about this. I want to be over her. Why can't I be over Harper?"
"Oh Abby, we won't ever be over her. And there's more than sadness there too. It's not just sadness," he reminded me. And it's not. But today it is. And I cried some more. August 17th. That was my due date.
It's not out of my system. I'm starting to feel a little troubled about that too. Should it be? Should I be better than I am now? I have what they call complicated grief. There were so many losses, one on top of the next, piling up like bad garbage. Wish I could just toss it all into the can and be done with it.
Getting up in the middle of the night to help Jeremy brought up more stuff too. This time I was on the other end, and I was so glad. I was so happy to be able to go help him when he needed me. But we talked today about the other phone calls in the middle of the night. There was one night in particular that I was scared and alone in the hospital. I told myself I was having a panic attack, I just needed to ride it out, but I couldn't. I still had Harper with me then. They were pumping me full of all kinds of drugs, but if there were ones I could avoid taking, I still did because of her. Seems so silly to me now. They offered me Ativan, but I said no at first. I was so scared. I thought I was going to die. I couldn't lay down. I couldn't breath when I laid down. I was going to jump out of my skin.
"What can I do to help you?" the sweet nurse asked as she sat next to me, rubbing my back. I was sobbing.
"I need my husband, but I don't want to call him. He needs his rest." I could just ride it out. I could. Surely I would get so tired that I would have to fall asleep. But when the nurse left my room after sitting with me for nearly an hour, I couldn't stand it. I was so scared. Finally I agreed to take the Ativan. But the Ativan didn't kick in right away, so I called Jeremy. I woke him from a dead sleep. The nights that he went home to sleep, he slept with the phone on the pillow, which explains that why to this day when I get up to go to the bathroom in the night he jumps up saying, "What's wrong? Are you okay?"
He came to be with me that night. And bless his heart, by the time he got there the medication had kicked in and I was loopy and groggy and hardly knew he was there. He told me there were other times the nurses called him in the night too. I didn't know that. I didn't know.
As I sit here writing this, I want to go back to that time. It was a living hell and I'm crazy for saying it, I know, but I do. I want to go back to that time because then I could feel Harper moving inside of me. She was still alive.
Boy, do I have issues? There's something in me lately that feels like I need to keep talking about this. I need to keep telling people what happened. I wonder if it's time to join a support group? I need to purge. There's still more in there. Is this normal? Don't get the wrong idea either okay? Because when I first started blogging, these thoughts and feelings were shackled to me everywhere I went. They aren't any more. I fly free much of the time. But this is my way of purging. So you get this distorted view of who I am. Oh Abby, it is what it is, let go.
Okay. So I need to get myself out of this funk. I can do this. I can. I'm going to start by changing the music I'm listening to as I write this. Certain music just allows me to wallow in the gunk. So let's listen to Dig: "The earth is hard, the treasure fine." "There was a time I might have surrendered, but not now." And yes, the words are better, but how about changing the whole mood Abby? Yes. That's what I need.
So here's my little pep talk to get me out of the funk:
This is the beauty of life Abby. This is it. The pain, the heartache, all of it. It has given your life so much abundance. And you know you can feel that there's something amazing right around the corner. Every day you wake up ready for it. It's going to happen. And you are strong! You are strong and can endure! Look at the love around you. What more could you ask for? Nothing. There is nothing more to this life than love. That's it! And you've got it! You are a blessed and lucky woman. Don't ever believe otherwise.
And colon-schmolin! Who needs a colon anyway? You don't! Look at you! You're running, you're doing yoga, (you're eating granola) - you are living the life you want to live. What a gift?! You are alive for crying out loud! ALIVE! Carpe-freakin'-Diem! Okay?!
Saturday, August 1, 2009
You've come a long way baby
August 1, 2009
Yesterday I had an ophthalmology appointment in the morning. When I was in the hospital last year some funky things started happening to my vision as a result of either the high doses of IV steroids I was on, or the cyclosporine treatment I was on, or all the straining I was doing on the toilet. I'm really not sure which. But beginning during my hospitalization I saw large brown spots out of my right eye, and any light made my vision pulse. It was strange. An ophthalmologist saw me in the hospital, and then I followed up with some tests and visited with an ophthalmologist after being discharged from the hospital too, but honestly, I didn't understand what it was all about. I didn't try to understand either. I just did what I was told. My mind was so hazy during that time. I was easily confused and couldn't verbalize very well (hard to believe, I know). There were so many times that when doctors were around I would just look to Jeremy with this helpless look on my face, hoping that he could speak for me. And he always did. (God I'm so thankful for him.)
So yesterday I was in a better state of mind. And I learned a lot. Apparently some test results from last year showed that I am at high risk for glaucoma. (Until yesterday, the only thing I knew about glaucoma was that it had to do with your eyes.) I have to go yearly to be screened and tested as a result. Apparently with glaucoma, once the damage is done there's not much you can do. (But really, I'm just beginning to learn about this.) I have to keep reminding myself that I'm only at high risk - I don't have the disease right now.
I asked Dr. U what caused this? She told me that Hispanics, African Americans, and people with a family history of glaucoma are at the highest risk for the disease. To my knowledge, I have no known family history of it. She said there was some asymmetry in my test results that made her more concerned than she might have otherwise been. Anyway . . .
She dilated my eyes (Jeremy and I joked that I was having a different type of dilation than I normally had on Fridays!) and checked me out. We scheduled a time for me to come in for the annual field vision study, and Jeremy and I left. But last night I started doing some research. What I found was that glaucoma can be linked to being on long-term steroids - which I was on last year. I knew steroids could cause vision problems, but I didn't know it was certain types of glaucoma.
So all of this is to say, I felt overwhelmed last night. It feels like this is yet another reminder of all that I have been through - and it will be a continual reminder. And yet another reason to be afraid. What if I lose my vision because of this? I just can't go there though. I can't be afraid of that. Jeremy said this morning, "Remember Abby, you don't have glaucoma. You're just at high risk for it." That's right. I don't have it. Let go Abby. You can't control this. Man, it sucks not to be able to control things, doesn't it? (Smile)
I asked Dr. U if ulcerative colitis can affect vision in and of itself (not just the medication side-effects). Yes. It can. It can cause inflammation in the eyes. I already have some inflammation in my joints as a result of UC. Ugh. But again I tell myself: Let go Abby. Let go.
Part of my frustration in all of this is that I didn't understand what was happening when I was sick. I didn't understand that this caused that. It just felt like all these things started happening to me. I felt so helpless. I kid you not, I did not understand that ulcerative colitis was a disease until after my colon had been removed (almost two months after my diagnosis). Dr. I came in my room after my surgery and said, "Ulcerative colitis is a lifelong disease." What?! All along I had been thinking that this was some illness, like the flu that if we could just find the right treatment it would be cured. I didn't understand why they were sending me home still so sick, having diarrhea and on high doses of steroids. I didn't understand why they gave me a blood transfusion thirty minutes before they discharged me. How could they do that and let me go? Didn't that mean I wasn't cured?
And it's not like my doctors didn't take plenty of time every day to answer the questions my family and I had. They did. And it's not like Dr. U didn't answer my questions yesterday. She did. And it's not like I'm a stupid person either. I'm not. But I think doctors are so used to talking about the conditions that they deal with that they forget that us normal folk don't have the same knowledge base as they do.
Looking back, I wish someone had sat down with me and started from the very beginning, talking to me like I was five years old, explaining every part of ulcerative colitis to me. Oh yeah, and the whole ostomy thing! The nurses brought in samples of ostomy supplies to show me before the surgery, but I really had no idea what I was getting into. No one told me what a stoma was going into the surgery. The surgeons talked about a bag that I would have. I just didn't get it. And I really don't want to blame the medical professionals here either. I fully admit that I was in a very fragile state mentally and emotionally. The medications I was on left me confused. Maybe they did explain things to me, I just didn't get it. And yes, none of this would have changed the outcome of my situation. BUT, it might have lessened my feelings of helplessness. Knowledge is power, is it not?
Okay, so I'm going to try to let go of all of this today. Writing helps. It really does. And on the positive side, this morning Jeremy said to me, "Do you know what the highlight of my day was yesterday?" Hm. I thought through the things we did. I had no idea. "It was hearing you tell the nurse, 'No I'm off that medication now. And I'm off that medication now. And I'm off that medication now.' It warmed my heart. You've come a long way." Ah shucks. I really have. I'm on two prescribed daily medications right now. That's it. Woo-hoooo!
Yesterday I had an ophthalmology appointment in the morning. When I was in the hospital last year some funky things started happening to my vision as a result of either the high doses of IV steroids I was on, or the cyclosporine treatment I was on, or all the straining I was doing on the toilet. I'm really not sure which. But beginning during my hospitalization I saw large brown spots out of my right eye, and any light made my vision pulse. It was strange. An ophthalmologist saw me in the hospital, and then I followed up with some tests and visited with an ophthalmologist after being discharged from the hospital too, but honestly, I didn't understand what it was all about. I didn't try to understand either. I just did what I was told. My mind was so hazy during that time. I was easily confused and couldn't verbalize very well (hard to believe, I know). There were so many times that when doctors were around I would just look to Jeremy with this helpless look on my face, hoping that he could speak for me. And he always did. (God I'm so thankful for him.)
So yesterday I was in a better state of mind. And I learned a lot. Apparently some test results from last year showed that I am at high risk for glaucoma. (Until yesterday, the only thing I knew about glaucoma was that it had to do with your eyes.) I have to go yearly to be screened and tested as a result. Apparently with glaucoma, once the damage is done there's not much you can do. (But really, I'm just beginning to learn about this.) I have to keep reminding myself that I'm only at high risk - I don't have the disease right now.
I asked Dr. U what caused this? She told me that Hispanics, African Americans, and people with a family history of glaucoma are at the highest risk for the disease. To my knowledge, I have no known family history of it. She said there was some asymmetry in my test results that made her more concerned than she might have otherwise been. Anyway . . .
She dilated my eyes (Jeremy and I joked that I was having a different type of dilation than I normally had on Fridays!) and checked me out. We scheduled a time for me to come in for the annual field vision study, and Jeremy and I left. But last night I started doing some research. What I found was that glaucoma can be linked to being on long-term steroids - which I was on last year. I knew steroids could cause vision problems, but I didn't know it was certain types of glaucoma.
So all of this is to say, I felt overwhelmed last night. It feels like this is yet another reminder of all that I have been through - and it will be a continual reminder. And yet another reason to be afraid. What if I lose my vision because of this? I just can't go there though. I can't be afraid of that. Jeremy said this morning, "Remember Abby, you don't have glaucoma. You're just at high risk for it." That's right. I don't have it. Let go Abby. You can't control this. Man, it sucks not to be able to control things, doesn't it? (Smile)
I asked Dr. U if ulcerative colitis can affect vision in and of itself (not just the medication side-effects). Yes. It can. It can cause inflammation in the eyes. I already have some inflammation in my joints as a result of UC. Ugh. But again I tell myself: Let go Abby. Let go.
Part of my frustration in all of this is that I didn't understand what was happening when I was sick. I didn't understand that this caused that. It just felt like all these things started happening to me. I felt so helpless. I kid you not, I did not understand that ulcerative colitis was a disease until after my colon had been removed (almost two months after my diagnosis). Dr. I came in my room after my surgery and said, "Ulcerative colitis is a lifelong disease." What?! All along I had been thinking that this was some illness, like the flu that if we could just find the right treatment it would be cured. I didn't understand why they were sending me home still so sick, having diarrhea and on high doses of steroids. I didn't understand why they gave me a blood transfusion thirty minutes before they discharged me. How could they do that and let me go? Didn't that mean I wasn't cured?
And it's not like my doctors didn't take plenty of time every day to answer the questions my family and I had. They did. And it's not like Dr. U didn't answer my questions yesterday. She did. And it's not like I'm a stupid person either. I'm not. But I think doctors are so used to talking about the conditions that they deal with that they forget that us normal folk don't have the same knowledge base as they do.
Looking back, I wish someone had sat down with me and started from the very beginning, talking to me like I was five years old, explaining every part of ulcerative colitis to me. Oh yeah, and the whole ostomy thing! The nurses brought in samples of ostomy supplies to show me before the surgery, but I really had no idea what I was getting into. No one told me what a stoma was going into the surgery. The surgeons talked about a bag that I would have. I just didn't get it. And I really don't want to blame the medical professionals here either. I fully admit that I was in a very fragile state mentally and emotionally. The medications I was on left me confused. Maybe they did explain things to me, I just didn't get it. And yes, none of this would have changed the outcome of my situation. BUT, it might have lessened my feelings of helplessness. Knowledge is power, is it not?
Okay, so I'm going to try to let go of all of this today. Writing helps. It really does. And on the positive side, this morning Jeremy said to me, "Do you know what the highlight of my day was yesterday?" Hm. I thought through the things we did. I had no idea. "It was hearing you tell the nurse, 'No I'm off that medication now. And I'm off that medication now. And I'm off that medication now.' It warmed my heart. You've come a long way." Ah shucks. I really have. I'm on two prescribed daily medications right now. That's it. Woo-hoooo!
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