March 31, 2009
I've had a busy few days! Which to translate means I've been feeling really good and been engaging in life again! Sunday I actually went for a run! Can you believe it? I only ran probably just under a mile and walked another mile on top of that, but it was a start. It felt so good. When I got home I came through the front door and said, "Jeremy, who am I?" and I hunched my shoulders over, hung my head and started taking about four inch steps very slowly.
"You're you after you got home from the hospital," he said.
"Okay, now who am I?" I asked and I started running through the house, pumping my arms.
"You're the Abby we've been waiting for," he said. I love it! Yes, my quads have been aching the last couple of days, but it's that good ache. Oh, man, I felt my heart beating quickly and found a nice even pace as I was running. When I stopped I felt the high. Boy, one taste of that runner's high and you'll never want to stop! It's a beautiful thing. I missed it! Percocet just doesn't compare.
Jeremy and I went to a wedding on Sunday evening. It was a beautiful day (a little windy, but I won't complain!). The wedding was outdoors as was the reception. We ate our dinner under the light of a sliver of a moon. I cried when the bride and groom exchanged their vows. I thought about Jeremy and I (because it's all about me -right?) on our wedding day and how we just had no idea what was in store for us, but we had love. We were crazy about each other, and we were so young. I felt so old and wise sitting there. (This is getting a little too schmaltzy isn't it?)
I started crying to the point that I was almost weeping when the father of the bride gave his toast. Jeremy was sitting in front of me and I leaned into his back, grabbed his hand and let the tears come. I cried because I was picturing Jeremy saying the same words at Harper's wedding, which would never happen. And I think Jeremy knew that's why I was crying because he comforted me, not in the way that said he thinks it's endearing that I cry at weddings, but in a way that said he understood that the tears were from something deeper.
I had a wonderful time at the wedding, laughing and visiting with friends. Having friends is such a gift, but having funny, entertaining friends is icing on the cake!!
I've been thinking about my mom's upcoming surgery lately. I'll leave on the 8th for Wisconsin. It feels so good to be in a position where I can give and help someone else for a change. I'm not the one needing all the time any more. It's like I had this fear that I had just become this needy person. No more independent Abby. She was gone, just like that. And I honestly didn't know if I would ever see her again.
The other piece of news that may be filed under "TMI" is that I finally got my period again. Yes, that may be too much intimate information for some of you, but I see it as a purely medical sign that my body is healing in leaps and bounds! It makes me feel so normal. It makes me feel whole. I'm at a healthy weight again. I think I've got some color back to my skin tone. And now I finally have my period again. I told my sister I haven't been so excited to get my period since I was in junior high waiting to get it for the first time.
Along those lines, Jeremy and I have been talking over whether we want to try to get pregnant again or not. This is not an easy decision for us. There are a lot of fears associated with getting pregnant again. We have played a lot of "what if" games regarding how we would handle another health crisis if it was brought on by another pregnancy. Not that any doctors have said anything about that happening. But still, there's fear. And so our conversations turn to sorting through how we handled the decisions we were faced with during our last crisis. There were so many tough decisions that we had to make - as a team. Would we do things differently? They haven't been easy talks, I'll tell you that much. And sometimes I wonder if they are just exercises in futility. At some point we have to let go of the fear and make a decision about what we want to do and go for it.
I'm trying. I'm trying to live my life without fear. It gets easier and easier the further away from the crisis I get. Thank God.
Tuesday, March 31, 2009
Saturday, March 28, 2009
Ed-u-ma-cation
March 28, 2009
Today was another wonderful day. Well, you know, actually, there was one health related issue that arose for me, but in comparison it's small beans. I finished one course of Cipro and Dr. T prescribed another one for me, but I didn't get to the pharmacy to pick it up till after work this morning so I missed a dose. I don't know if it's just coincidence or if it was because I missed a dose, but all day my stools were watery and they burned, which are symptoms of pouchitis. We'll see if that's better tomorrow after a couple Cipro doses. I have a fear that that's going to happen. Although folks on j-pouch.org say they've taken Cipro for years (one person three years, one person 13 years) because of chronic pouchitis, I don't know how keen Dr. T is going to be on continuing to prescribe it for me. The refill she called in for me yesterday is only for two weeks. She's already said to me I can take it long-term, but not forever.
Chronic pouchitis isn't a good thing. Basically because the reservoir that holds my stool (my j-pouch) is made of my small intestine (because I no longer have a colon which normally holds the stool), it can sometimes have a difficult time creating the appropriate flora/bacteria (which the colon was used to doing) and when that is out of balance an infection can occur = pouchitis = increase in the number of BMs a day (around 12 which leads to dehydration), burning when you have a BM (which leads to a sore bum), watery BMs (which leads to dehydration), fever, gas, etc., etc.. Because the opening to my j-pouch has been having problems dilating (opening when I have BMs) appropriately due to the formation of scar tissue where the opening was made, I am not always able to completely empty my reservoir (j-pouch) which means stool is left in there, thereby creating an inappropriate balance of bacteria, which also could be leading to pouchitis. It's hard to know what the cause is.
The solution? I would prefer to take medication, even if it means long-term. Some people also rotate antibiotics on a monthly basis such as Cipro and Flagyl (and others I don't remember) for chronic pouchitis so they don't grow a resistance to them - that is pretty common among my fellow j-pouchers who also suffer from chronic pouchitis. Another thing folks due to deal with it is take probiotics in hopes that that will balance out the flora/bacteria in the pouch. I'm actually going to check with my fellow j-pouchers on whether they get prescribed probiotics or if they get them OTC. I have been eating the yogurts and stuff, but maybe that's not strong enough. And finally, another solution is to have surgery.
Surgery: Depending on what the cause of my pouchitis is, either re-doing the opening to my pouch so it dilates appropriately might solve the problem, or having a whole new pouch constructed in hopes that the new pouch is healthy enough to maintain a good balance. The latter would suck. It would mean living with another temporary ileostomy (intestine sticking out of my abdomen with a bag attached to it where I evacuate stool) until the pouch healed. There is a risk too that when another pouch is created there wouldn't be enough length of a certain vein that supplies blood to the pouch to stretch to my rectum and so I would end up with a permanent ileostomy. That would suck too (understatement). Although I guess if that happens sometimes that vein can stretch over time (they attach it to the side of your abdomen so it stretchs) and later it might be possible to get rid of the ileostomy (crazy huh?).
Oh my gosh - I have no idea if any of this is making sense to you! I'm doing my best to explain. If anyone is reading this and has questions, please feel free to ask. www.jpouch.org has great diagrams and stuff showing the whole process. It's a whole different world, the j-pouch world. Welcome!
Today I did a couple of things to live freely in my j-pouch state (meaning no ileostomy any more). One, I sorted through my clothes and made a big stack to give to the Goodwill of things that I wore when I had my ileostomy. I was careful to wear clothes that were loose around my waist and that came down to my upper thigh so as to hide my bag (or "appliance" as they call it). Thank God for baby-doll and tunic styles being in fashion!
The other thing I did was I went grocery shopping and bought whatever food I wanted (foods the old Abby used to eat + meat). When you don't have a colon, you are very aware of how every single food affects the quality of your stool, and you want GOOD quality! Yes, it is a crazy world, this colon-less world. When you have a j-pouch, after time the pouch starts acting like a colon, so you don't have to worry so much about what you eat. But you know what, that's probably enough of an education on life with a j-pouch for tonight. Maybe another day I'll explain more about food and the colon for those of you who don't know.
Today was another wonderful day. Well, you know, actually, there was one health related issue that arose for me, but in comparison it's small beans. I finished one course of Cipro and Dr. T prescribed another one for me, but I didn't get to the pharmacy to pick it up till after work this morning so I missed a dose. I don't know if it's just coincidence or if it was because I missed a dose, but all day my stools were watery and they burned, which are symptoms of pouchitis. We'll see if that's better tomorrow after a couple Cipro doses. I have a fear that that's going to happen. Although folks on j-pouch.org say they've taken Cipro for years (one person three years, one person 13 years) because of chronic pouchitis, I don't know how keen Dr. T is going to be on continuing to prescribe it for me. The refill she called in for me yesterday is only for two weeks. She's already said to me I can take it long-term, but not forever.
Chronic pouchitis isn't a good thing. Basically because the reservoir that holds my stool (my j-pouch) is made of my small intestine (because I no longer have a colon which normally holds the stool), it can sometimes have a difficult time creating the appropriate flora/bacteria (which the colon was used to doing) and when that is out of balance an infection can occur = pouchitis = increase in the number of BMs a day (around 12 which leads to dehydration), burning when you have a BM (which leads to a sore bum), watery BMs (which leads to dehydration), fever, gas, etc., etc.. Because the opening to my j-pouch has been having problems dilating (opening when I have BMs) appropriately due to the formation of scar tissue where the opening was made, I am not always able to completely empty my reservoir (j-pouch) which means stool is left in there, thereby creating an inappropriate balance of bacteria, which also could be leading to pouchitis. It's hard to know what the cause is.
The solution? I would prefer to take medication, even if it means long-term. Some people also rotate antibiotics on a monthly basis such as Cipro and Flagyl (and others I don't remember) for chronic pouchitis so they don't grow a resistance to them - that is pretty common among my fellow j-pouchers who also suffer from chronic pouchitis. Another thing folks due to deal with it is take probiotics in hopes that that will balance out the flora/bacteria in the pouch. I'm actually going to check with my fellow j-pouchers on whether they get prescribed probiotics or if they get them OTC. I have been eating the yogurts and stuff, but maybe that's not strong enough. And finally, another solution is to have surgery.
Surgery: Depending on what the cause of my pouchitis is, either re-doing the opening to my pouch so it dilates appropriately might solve the problem, or having a whole new pouch constructed in hopes that the new pouch is healthy enough to maintain a good balance. The latter would suck. It would mean living with another temporary ileostomy (intestine sticking out of my abdomen with a bag attached to it where I evacuate stool) until the pouch healed. There is a risk too that when another pouch is created there wouldn't be enough length of a certain vein that supplies blood to the pouch to stretch to my rectum and so I would end up with a permanent ileostomy. That would suck too (understatement). Although I guess if that happens sometimes that vein can stretch over time (they attach it to the side of your abdomen so it stretchs) and later it might be possible to get rid of the ileostomy (crazy huh?).
Oh my gosh - I have no idea if any of this is making sense to you! I'm doing my best to explain. If anyone is reading this and has questions, please feel free to ask. www.jpouch.org has great diagrams and stuff showing the whole process. It's a whole different world, the j-pouch world. Welcome!
Today I did a couple of things to live freely in my j-pouch state (meaning no ileostomy any more). One, I sorted through my clothes and made a big stack to give to the Goodwill of things that I wore when I had my ileostomy. I was careful to wear clothes that were loose around my waist and that came down to my upper thigh so as to hide my bag (or "appliance" as they call it). Thank God for baby-doll and tunic styles being in fashion!
The other thing I did was I went grocery shopping and bought whatever food I wanted (foods the old Abby used to eat + meat). When you don't have a colon, you are very aware of how every single food affects the quality of your stool, and you want GOOD quality! Yes, it is a crazy world, this colon-less world. When you have a j-pouch, after time the pouch starts acting like a colon, so you don't have to worry so much about what you eat. But you know what, that's probably enough of an education on life with a j-pouch for tonight. Maybe another day I'll explain more about food and the colon for those of you who don't know.
Friday, March 27, 2009
More tomorrow
March 27, 2009
There are things I want to write about, but I need to process first. I guess I'm just feeling a little private today about it all. I will just briefly say that I had another day of feeling good. I didn't have a dilation done today as planned because I didn't think I needed one. That's a blessing!
Maybe I'll write more tomorrow.
There are things I want to write about, but I need to process first. I guess I'm just feeling a little private today about it all. I will just briefly say that I had another day of feeling good. I didn't have a dilation done today as planned because I didn't think I needed one. That's a blessing!
Maybe I'll write more tomorrow.
Thursday, March 26, 2009
Voices to the sky
March 26, 2009
I was thinking today (yes, on my ride home from work) about my tattoo. Getting my tattoo, something permanent that reminds me of Harper, is allowing me to let go of other things, like her ashes. I think I'm at a place now where I'm ready to scatter her ashes. I told Jeremy the other day that if it works out maybe we can do it on the day I delivered her. Wow. As I was writing those words I delivered her the double entendre struck me. Except perhaps the opposite is true. Perhaps she delivered me.
Anyway, back to my ride home from work. I was thinking about Harper's ashes. I thought about how one time when I was in the valley of my grief I didn't want to let go of her little body. I didn't want to let go of her ashes. I wanted her to still be a part of me. I wanted to cover my face with her ashes and wash my hands with them. Then I started thinking about expressions of grief and how in biblical times (and maybe still to this day other cultures do this) people would tear their clothes as a symbol of their grief. I understand that. At one point, doing that would have been satisfying to me. It would have felt appropriate.
When I went back to work after losing Harper I thought how sad it is that our culture gave up the tradition of wearing a black arm band when one is grieving. I wished I had a black arm band so people knew why I was the way I was. I also wish when I encounter other people who are grieving that there would be some way of knowing. Why did we stop doing that?
From there my thoughts went to how I am not feeling sad right now. In fact, I am feeling hopeful. I might even go so far as saying I feel, brace yourself, jubilant! Yes, that's right. I think jubilant describes how I feel about being healthy and hopeful again. I was trying to picture something that people do to express this feeling. The first thing that popped into my mind was an African tribe stomping their bare feet on the dusty ground and dancing together, raising their voices to the sky. I have no idea where that image came from, but it fit how I was feeling on my sunny drive home from work. Can you see it?
I was thinking today (yes, on my ride home from work) about my tattoo. Getting my tattoo, something permanent that reminds me of Harper, is allowing me to let go of other things, like her ashes. I think I'm at a place now where I'm ready to scatter her ashes. I told Jeremy the other day that if it works out maybe we can do it on the day I delivered her. Wow. As I was writing those words I delivered her the double entendre struck me. Except perhaps the opposite is true. Perhaps she delivered me.
Anyway, back to my ride home from work. I was thinking about Harper's ashes. I thought about how one time when I was in the valley of my grief I didn't want to let go of her little body. I didn't want to let go of her ashes. I wanted her to still be a part of me. I wanted to cover my face with her ashes and wash my hands with them. Then I started thinking about expressions of grief and how in biblical times (and maybe still to this day other cultures do this) people would tear their clothes as a symbol of their grief. I understand that. At one point, doing that would have been satisfying to me. It would have felt appropriate.
When I went back to work after losing Harper I thought how sad it is that our culture gave up the tradition of wearing a black arm band when one is grieving. I wished I had a black arm band so people knew why I was the way I was. I also wish when I encounter other people who are grieving that there would be some way of knowing. Why did we stop doing that?
From there my thoughts went to how I am not feeling sad right now. In fact, I am feeling hopeful. I might even go so far as saying I feel, brace yourself, jubilant! Yes, that's right. I think jubilant describes how I feel about being healthy and hopeful again. I was trying to picture something that people do to express this feeling. The first thing that popped into my mind was an African tribe stomping their bare feet on the dusty ground and dancing together, raising their voices to the sky. I have no idea where that image came from, but it fit how I was feeling on my sunny drive home from work. Can you see it?
Wednesday, March 25, 2009
Tattoo
March 25, 2009
I'm feeling great again today. Surely I've turned the corner? I do have a dilation scheduled for Friday, but I'm not even sure that I need it. It will be interesting to see what Dr. T says after she checks out what's going on inside.
I've been daydreaming about the possibility of having a baby. I'm not ready yet. My body isn't ready yet, and there may be too much scar tissue around my ovaries and such for me to actually get pregnant again, but still I daydream. It's a strange thing to start allowing those dreams back. Tonight as I was laying on the couch reading and Jeremy was laying on the couch listening to his new Church CD, I could picture a little one here with us. I could see him/her cuddling up to me and reading too. It just fit the picture. And then I panicked a little. By having another child in my daydreams, am I replacing Harper? I don't think so, but still I panicked a little. She is my child and I don't want to let go of her. Even if we were able to have another child, Harper would be the big sister that wasn't there. She would be the big sister, the "Delia" in my mind.
So this last weekend while I was in Chicago I did something to commemorate Harper. I haven't wanted to write about it because I've been a little afraid that people would judge me. But it was monumental to me. So I want to explain myself, but first I'll tell you what I did (as if you didn't know already). I got a tattoo of a hummingbird over my heart. I experienced Harper as a little hummingbird fluttering inside me. Every time I see a hummingbird (which is almost daily in our back yard) I think of her. I had been thinking about the tattoo for quite some time. I decided it was a good time to do it; the anniversary weekend of when I got sick.
I sat in the chair while Mark, the tattoo artist worked his craft. It hurt, but I didn't flinch. When I experienced pain I thought, "It's fitting that this would hurt." There has been pain associated with this experience, but look at what a beautiful thing there is as a result? I think the tattoo is beautiful. And I will have it forever. She will always be a part of me.
The other part of getting the tattoo that was fulfilling to me is that this whole experience has really made my body look quite hideous to society's standards, which I am coming to terms with and am at a point where I can almost laugh. But I thought, why not add some beauty to it? Why not do something to make it more interesting looking. It was empowering to me.
There is part of me that feels a little vulnerable putting it out there that I did this. But it's actually an important part of my healing, believe it or not, so I wanted to share it. There's another part of me that is angry that I care at all what people think about me. So I guess the truth lies somewhere in between right?
Tuesday, March 24, 2009
Dreaming and planning
March 24, 2009
Today was the day, one year ago, when I was hospitalized. I remember every detail of that day, until I actually got to my hospital room. Then the days blur together in my mind. But I don't want to live in the past today. I want to be where I am right now.
Today was a very good day. I can't believe how many very good days I've been having in a row!! I didn't have to go into work until noon today and Jeremy didn't work today so we got to spend the morning together. When I woke up he was just getting back from the grocery store where he bought me a Starbucks iced mocha, half-caf with whip. Yum!
We lazed around a little bit and then threw on our workout clothes and went for a walk in the beautiful Arizona sunshine. I love walking with him. We get to talk and catch up on things and dream and plan. And that's what we did this morning. We dreamed and planned. Do you know how long it's been since dreaming and planning has been a part of our lives? It's been a long time. It's such an important part of living too.
Give a girl a week or so of feeling good and watch her mind go! Already I have plans in my mind to run a race this year sometime (of course whether it's a 5K or a half-marathon is yet to be determined by my on-going energy level). I'm thinking about what yoga classes might work with my schedule. Today I looked up The Good Samaritans to see about volunteering with them (something we looked in to a while back but never ended up doing). Jeremy and I talked about home improvement projects we would like to do. We also talked about what the future holds for us as far as having a baby is concerned. Lots of things to think about . . .
One thing that dawned on me today on my drive to work (it's always on my drive to/from work, isn't it?) is that I think there was this part of me that was afraid that something had happened to my personality that made me become one of those complaining type people through this whole ordeal. Maybe life was really pretty good and I was just not ever going to be happy because of some personality flaw or something. Today I actually thought to myself, "See Abby, it's not that you wanted to be in pain all the time so you could complain. You really did want to be pain-free and happy!" I have no idea where that came from. Probably because I really don't want to be a negative person. I don't want people to say, "Oh here she comes, that woman that always complains about how bad her health is." Part of it is also that I feel personally responsible for all that happened too. But I know that's just crazy talk. And I honestly think I'm getting better at thinking about it in terms of it being something that's happened to me, not something that is my fault.
I feel like I'm babbling a bit here, so I'm going to end for now.
Today was the day, one year ago, when I was hospitalized. I remember every detail of that day, until I actually got to my hospital room. Then the days blur together in my mind. But I don't want to live in the past today. I want to be where I am right now.
Today was a very good day. I can't believe how many very good days I've been having in a row!! I didn't have to go into work until noon today and Jeremy didn't work today so we got to spend the morning together. When I woke up he was just getting back from the grocery store where he bought me a Starbucks iced mocha, half-caf with whip. Yum!
We lazed around a little bit and then threw on our workout clothes and went for a walk in the beautiful Arizona sunshine. I love walking with him. We get to talk and catch up on things and dream and plan. And that's what we did this morning. We dreamed and planned. Do you know how long it's been since dreaming and planning has been a part of our lives? It's been a long time. It's such an important part of living too.
Give a girl a week or so of feeling good and watch her mind go! Already I have plans in my mind to run a race this year sometime (of course whether it's a 5K or a half-marathon is yet to be determined by my on-going energy level). I'm thinking about what yoga classes might work with my schedule. Today I looked up The Good Samaritans to see about volunteering with them (something we looked in to a while back but never ended up doing). Jeremy and I talked about home improvement projects we would like to do. We also talked about what the future holds for us as far as having a baby is concerned. Lots of things to think about . . .
One thing that dawned on me today on my drive to work (it's always on my drive to/from work, isn't it?) is that I think there was this part of me that was afraid that something had happened to my personality that made me become one of those complaining type people through this whole ordeal. Maybe life was really pretty good and I was just not ever going to be happy because of some personality flaw or something. Today I actually thought to myself, "See Abby, it's not that you wanted to be in pain all the time so you could complain. You really did want to be pain-free and happy!" I have no idea where that came from. Probably because I really don't want to be a negative person. I don't want people to say, "Oh here she comes, that woman that always complains about how bad her health is." Part of it is also that I feel personally responsible for all that happened too. But I know that's just crazy talk. And I honestly think I'm getting better at thinking about it in terms of it being something that's happened to me, not something that is my fault.
I feel like I'm babbling a bit here, so I'm going to end for now.
Monday, March 23, 2009
Sweet relief
March 23, 2009
Relief is a bittersweet thing. You are keenly aware of the suffering that you experienced that brought you to this place, but the suffering is no longer there. I feel relief well up inside me and it almost brings me to tears. I don’t know what’s happened, and I’m not going to ask too many questions, but I feel like I am on the other side now. I’ve had at least a week now of feeling good constantly. No pain, no exhaustion, just feeling good. It’s hard for me to even think about what I’ve come through. I don’t want to remember. I want to just move on now. But I can’t forget.
Being with my dad and Barbara this weekend reminded me of the last time I was with them together. They had come to Tucson in December to celebrate Christmas with us. I had apparently been developing a peristomal infection (that means an infection on my skin near my stoma – the stoma was the part of my intestine that stuck out of my stomach and emptied into a bag that was attached to my stomach with adhesive). Because of the infection, my ostomy bag wouldn’t stick to my skin. My bag had fallen off four or five times in the day. And when we couldn’t get a new bag attached, the output (bile and stool) from my stoma ended up running onto my skin. It was acid on an open wound.
Jeremy and I didn’t know what to do. I was laying in bed, writhing in pain, moaning and yelling when the bile would run onto the open sores on my stomach. Jeremy was e-mailing and on the phone with our ostomy nurse, trying to find out from her what we should do. My dad and Barbara helped by bringing me wet paper towels to wipe off my stomach with. I ended up in the hospital that weekend. It was during that stay that Dr. T arrived on scene and said she could do my ostomy take-down surgery right then so I wouldn’t have to deal with the bags any more. Relief. Sweet relief. How do you forget something like that? That was some intense physical pain.
Again, I’m aware of what it must have been like for Jeremy and my dad and Barbara to see me in so much pain not be able to do much to help me. I wonder if I’ll ever stop being grateful for how I feel now. Part of me hopes that I will, because that would mean I have moved on in some respects. Part of me thinks I will never stop being grateful.
What will become of all of this? This could not have happened for no reason (pardon the double negative). Or do we make the reason?
And the depression too; I am feeling relief from the depression. I am seeing beauty in the world. I feel hope for the future – for my future. Can you believe that? Sweet relief.
Relief is a bittersweet thing. You are keenly aware of the suffering that you experienced that brought you to this place, but the suffering is no longer there. I feel relief well up inside me and it almost brings me to tears. I don’t know what’s happened, and I’m not going to ask too many questions, but I feel like I am on the other side now. I’ve had at least a week now of feeling good constantly. No pain, no exhaustion, just feeling good. It’s hard for me to even think about what I’ve come through. I don’t want to remember. I want to just move on now. But I can’t forget.
Being with my dad and Barbara this weekend reminded me of the last time I was with them together. They had come to Tucson in December to celebrate Christmas with us. I had apparently been developing a peristomal infection (that means an infection on my skin near my stoma – the stoma was the part of my intestine that stuck out of my stomach and emptied into a bag that was attached to my stomach with adhesive). Because of the infection, my ostomy bag wouldn’t stick to my skin. My bag had fallen off four or five times in the day. And when we couldn’t get a new bag attached, the output (bile and stool) from my stoma ended up running onto my skin. It was acid on an open wound.
Jeremy and I didn’t know what to do. I was laying in bed, writhing in pain, moaning and yelling when the bile would run onto the open sores on my stomach. Jeremy was e-mailing and on the phone with our ostomy nurse, trying to find out from her what we should do. My dad and Barbara helped by bringing me wet paper towels to wipe off my stomach with. I ended up in the hospital that weekend. It was during that stay that Dr. T arrived on scene and said she could do my ostomy take-down surgery right then so I wouldn’t have to deal with the bags any more. Relief. Sweet relief. How do you forget something like that? That was some intense physical pain.
Again, I’m aware of what it must have been like for Jeremy and my dad and Barbara to see me in so much pain not be able to do much to help me. I wonder if I’ll ever stop being grateful for how I feel now. Part of me hopes that I will, because that would mean I have moved on in some respects. Part of me thinks I will never stop being grateful.
What will become of all of this? This could not have happened for no reason (pardon the double negative). Or do we make the reason?
And the depression too; I am feeling relief from the depression. I am seeing beauty in the world. I feel hope for the future – for my future. Can you believe that? Sweet relief.
Sunday, March 22, 2009
It is well
March 22, 2009
It's been a full, wonderful day with family. I don't want to take much time to blog tonight, but I will write briefly about church this morning. Dad asked if we would go to church with them as there were a lot of people who had been praying for me from their church. It was so sweet to me to meet people who had cared so much about me and my family without having ever met us. I was deeply touched.
And then we sang It is Well with My Soul and I was moved to tears. Do you know the song? It's a song I sang in church growing up. I felt as I sang that song like, "Yes, it is well with my soul."
I have been feeling so good physically lately. Except when I go to the bathroom, I feel "normal" again. I can't believe it! I'm so very thankful.
It's been a full, wonderful day with family. I don't want to take much time to blog tonight, but I will write briefly about church this morning. Dad asked if we would go to church with them as there were a lot of people who had been praying for me from their church. It was so sweet to me to meet people who had cared so much about me and my family without having ever met us. I was deeply touched.
And then we sang It is Well with My Soul and I was moved to tears. Do you know the song? It's a song I sang in church growing up. I felt as I sang that song like, "Yes, it is well with my soul."
I have been feeling so good physically lately. Except when I go to the bathroom, I feel "normal" again. I can't believe it! I'm so very thankful.
Saturday, March 21, 2009
Sweet memories
March 21, 2009
I'm staying at my dad's house in Chicago this weekend. The last time I stayed here was a year ago when my illness struck hard. The last time I slept in this room, in this bed, I was pregnant. Last night as I crawled under the covers and turned out the lights, I thought about Harper. I remembered how the last time I was here, she was with me, inside me. And I was very aware of her presence. She was all I thought about. I loved it.
Last night I turned in bed to sleep on my side. I remembered doing the same thing a year ago. I remembered moving pillows around to help keep me comfortable while I slept - one between my knees, one behind my back, one under my stomach. And as I lay there in bed, I felt this strong connection to Harper. And for one of the first times, I didn't feel guilty or like I had let her down when I thought about her. I just remembered what it was like, curling up in bed with her the last time I was here. I remembered feeling her move inside me. I was comforted. I felt like a real mother, snuggling in bed with her, protecting her.
There's so much more I could say right now. I've had thoughts swirling in my mind all day about her. But for now, I want to end my day thinking about curling up with her in bed. I've done a major thing today to remember her, but for now I want it to be something private that isn't shared with whoever may be out there reading. Maybe in a few days I'll write more. For today the memories have been sweet.
I'm staying at my dad's house in Chicago this weekend. The last time I stayed here was a year ago when my illness struck hard. The last time I slept in this room, in this bed, I was pregnant. Last night as I crawled under the covers and turned out the lights, I thought about Harper. I remembered how the last time I was here, she was with me, inside me. And I was very aware of her presence. She was all I thought about. I loved it.
Last night I turned in bed to sleep on my side. I remembered doing the same thing a year ago. I remembered moving pillows around to help keep me comfortable while I slept - one between my knees, one behind my back, one under my stomach. And as I lay there in bed, I felt this strong connection to Harper. And for one of the first times, I didn't feel guilty or like I had let her down when I thought about her. I just remembered what it was like, curling up in bed with her the last time I was here. I remembered feeling her move inside me. I was comforted. I felt like a real mother, snuggling in bed with her, protecting her.
There's so much more I could say right now. I've had thoughts swirling in my mind all day about her. But for now, I want to end my day thinking about curling up with her in bed. I've done a major thing today to remember her, but for now I want it to be something private that isn't shared with whoever may be out there reading. Maybe in a few days I'll write more. For today the memories have been sweet.
Friday, March 20, 2009
I was not alone
March 20, 2009
I'm sitting at the airport waiting for my flight to board. I'm headed to Chicago this weekend. I'm so excited to see my family (especially the little ones!).
So this is it folks. This weekend marks a year since my health crisis really began. It was a year ago this weekend that I was in Chicago and ended up in the emergency room (on Easter Sunday). The next day, Monday the 24th I was back in Tucson and was hospitalized. I was so sick. I honestly didn't think I would see this day. Here I am now, on the other side.
There are still so many things to sort through in my mind about all of this. Questions I've asked before and tried to answer. I've been through some strange things in the past year. Those experiences have changed my world. They've transformed how I view things and how I feel. More than anything I want to know if other people understand.
Do you understand what it's like not to know if you're going to live much longer and how that changes your will? Do you understand what it's like to have your body go through dramatic physical transformations in short periods of time and how you look at physicality differently after that? Do you know how fragile and resilient we are and how the knowledge of both those things creates fear and courage? Do you know what it's like to live in the balance of those things? Have you experienced the embodiment of parenthood and how that changes your capacity to love?
How do people navigate daily life with all these questions going unanswered? I want to share with other people what my experiences have been so I can know that others understand. I want to know I'm not alone. I'm certain I'm not alone in that experience. Everyone wants to know they're not alone.
I've been so wrapped up in my own processing of things that I forget that my family and friends also went through this crisis with me. The other day I asked Jeremy, "Do you remember when we ended up in the ER and I passed out on the commode because I was dehydrated and losing blood. You and the nurse lifted me off the commode and put me back in bed, didn't you?"
"Yeah," he said somberly.
"What was going through your head then Jeremy?"
"I thought you were dying Abby." I remember sitting on the commode and passing blood clots and feeling myself start to lose consciousness. I fought to hold on and then finally let go. I couldn't hear and couldn't see. When I came to I could hear Jeremy and the nurse yelling at me, trying to get my attention. I just wanted to rest. I could feel people trying to move me, but I didn't know what was going on. I thought I was dying. My husband thought I was dying.
What was it like for him? To watch his wife pass out cold with blood coming out her butt. My heart starts racing just thinking about what it must have been like for him. I never want to be in that situation. No wonder he hardly left my side. I've asked my family members questions about their reactions to hearing "life or death" on the other end of the line. I can't even really go there emotionally. It's not something I even want to try to imagine. But there is this awareness I have that this wasn't just my experience. Family members tell me about how they've experienced the grief of losing Harper too; moments that tears have overtaken them. I have not been alone in this. Not for one second was I alone.
I'm sitting at the airport waiting for my flight to board. I'm headed to Chicago this weekend. I'm so excited to see my family (especially the little ones!).
So this is it folks. This weekend marks a year since my health crisis really began. It was a year ago this weekend that I was in Chicago and ended up in the emergency room (on Easter Sunday). The next day, Monday the 24th I was back in Tucson and was hospitalized. I was so sick. I honestly didn't think I would see this day. Here I am now, on the other side.
There are still so many things to sort through in my mind about all of this. Questions I've asked before and tried to answer. I've been through some strange things in the past year. Those experiences have changed my world. They've transformed how I view things and how I feel. More than anything I want to know if other people understand.
Do you understand what it's like not to know if you're going to live much longer and how that changes your will? Do you understand what it's like to have your body go through dramatic physical transformations in short periods of time and how you look at physicality differently after that? Do you know how fragile and resilient we are and how the knowledge of both those things creates fear and courage? Do you know what it's like to live in the balance of those things? Have you experienced the embodiment of parenthood and how that changes your capacity to love?
How do people navigate daily life with all these questions going unanswered? I want to share with other people what my experiences have been so I can know that others understand. I want to know I'm not alone. I'm certain I'm not alone in that experience. Everyone wants to know they're not alone.
I've been so wrapped up in my own processing of things that I forget that my family and friends also went through this crisis with me. The other day I asked Jeremy, "Do you remember when we ended up in the ER and I passed out on the commode because I was dehydrated and losing blood. You and the nurse lifted me off the commode and put me back in bed, didn't you?"
"Yeah," he said somberly.
"What was going through your head then Jeremy?"
"I thought you were dying Abby." I remember sitting on the commode and passing blood clots and feeling myself start to lose consciousness. I fought to hold on and then finally let go. I couldn't hear and couldn't see. When I came to I could hear Jeremy and the nurse yelling at me, trying to get my attention. I just wanted to rest. I could feel people trying to move me, but I didn't know what was going on. I thought I was dying. My husband thought I was dying.
What was it like for him? To watch his wife pass out cold with blood coming out her butt. My heart starts racing just thinking about what it must have been like for him. I never want to be in that situation. No wonder he hardly left my side. I've asked my family members questions about their reactions to hearing "life or death" on the other end of the line. I can't even really go there emotionally. It's not something I even want to try to imagine. But there is this awareness I have that this wasn't just my experience. Family members tell me about how they've experienced the grief of losing Harper too; moments that tears have overtaken them. I have not been alone in this. Not for one second was I alone.
Thursday, March 19, 2009
How is that possible?
March 19, 2009
Could it be? Were these moments of happiness rushing over me? Was it joy I was feeling? Today was a wonderful day. I felt good when I woke up. I had energy and pep in my step. I can't believe I'm in this place! I am so grateful I could cry.
On my drive in to work this morning I started thinking about "all I've put Jeremy through" this past year. And then I stopped myself. No! I did not put Jeremy through anything. It wasn't my fault that all this happened. It just happened. And it happened to both of us. And that shift in thinking finally sunk in and I felt this new sense of freedom emotionally. I thought about the partnership that we have developed even more this year. We have dealt with some pretty tough stuff.
On my drive home from work this afternoon my heart welled up with love thinking about Jeremy. I'm in love with him. Thinking about him makes me happy even after eleven and a half years of marriage! Knowing that when I get home he will be there excites me; really it does. How lucky am I to be 34 years old and still in love?! And to know that it's more than just infatuation or marshmallow fluff; that there is real sustenance there, man that's fulfilling. What more could a person ask for? Really? I feel pretty darn content with my life right now (today anyway!). After everything, I feel content. How is that possible?
Could it be? Were these moments of happiness rushing over me? Was it joy I was feeling? Today was a wonderful day. I felt good when I woke up. I had energy and pep in my step. I can't believe I'm in this place! I am so grateful I could cry.
On my drive in to work this morning I started thinking about "all I've put Jeremy through" this past year. And then I stopped myself. No! I did not put Jeremy through anything. It wasn't my fault that all this happened. It just happened. And it happened to both of us. And that shift in thinking finally sunk in and I felt this new sense of freedom emotionally. I thought about the partnership that we have developed even more this year. We have dealt with some pretty tough stuff.
On my drive home from work this afternoon my heart welled up with love thinking about Jeremy. I'm in love with him. Thinking about him makes me happy even after eleven and a half years of marriage! Knowing that when I get home he will be there excites me; really it does. How lucky am I to be 34 years old and still in love?! And to know that it's more than just infatuation or marshmallow fluff; that there is real sustenance there, man that's fulfilling. What more could a person ask for? Really? I feel pretty darn content with my life right now (today anyway!). After everything, I feel content. How is that possible?
Wednesday, March 18, 2009
Let it fly!
March 18, 2009
I no longer fear the questions. I have so many questions for God. Though I knew intellectually that it was okay for me to ask questions of God, emotionally I used to feel a great amount of guilt for doing so. Maybe not so much guilt, but this sense of defensiveness. Like I had to prove to others I was a person of faith and if I asked questions I had to explain why and how I could have such questions. No more. Now I let the questions fly without reservation.
First of all, the questions are authentic. They are coming from a place of really trying to figure out what is going on. I need to make sense of the chaos if I'm going to be able to survive it (or so I think). But more than that, I have to believe that God wants me to ask the questions. The fact that I'm seeking answers from him has to say something to him about my heart.
Never before in my life have things been as clear as they are to me right now, in the midst of all the chaos. Isn't that crazy? What is real and true and what is important have settled deep inside me. It's like I've sifted through all the dogma and while there are only a few ideas, principles, tenants, whatever you want to call them, that have fallen through the sieve, they have settled there and are growing roots.
One of the seedlings that has taken root in me is about love. I feel like I've experienced God through the love that people have poured out on Jeremy and me this past year (God is love, right?). It has been life changing for me. Before that, I have no idea what I thought experiencing God was about. It was all just language to me. Gorgeous sunsets and views from the mountain top were awe inspiring, yes, but they were not experiencing God like this. Man, I'm getting all emotional writing about this. It kind of chokes me up. I'm just so thankful.
By the way, I've been feeling really good physically lately. For that I'm thankful too!
I no longer fear the questions. I have so many questions for God. Though I knew intellectually that it was okay for me to ask questions of God, emotionally I used to feel a great amount of guilt for doing so. Maybe not so much guilt, but this sense of defensiveness. Like I had to prove to others I was a person of faith and if I asked questions I had to explain why and how I could have such questions. No more. Now I let the questions fly without reservation.
First of all, the questions are authentic. They are coming from a place of really trying to figure out what is going on. I need to make sense of the chaos if I'm going to be able to survive it (or so I think). But more than that, I have to believe that God wants me to ask the questions. The fact that I'm seeking answers from him has to say something to him about my heart.
Never before in my life have things been as clear as they are to me right now, in the midst of all the chaos. Isn't that crazy? What is real and true and what is important have settled deep inside me. It's like I've sifted through all the dogma and while there are only a few ideas, principles, tenants, whatever you want to call them, that have fallen through the sieve, they have settled there and are growing roots.
One of the seedlings that has taken root in me is about love. I feel like I've experienced God through the love that people have poured out on Jeremy and me this past year (God is love, right?). It has been life changing for me. Before that, I have no idea what I thought experiencing God was about. It was all just language to me. Gorgeous sunsets and views from the mountain top were awe inspiring, yes, but they were not experiencing God like this. Man, I'm getting all emotional writing about this. It kind of chokes me up. I'm just so thankful.
By the way, I've been feeling really good physically lately. For that I'm thankful too!
Tuesday, March 17, 2009
The great motivator
March 17, 2009
I'm fighting with the "shoulds" in my mind today. All day long I was thinking about Harper, wondering, "Should I still be missing her and thinking about her this much?" Am I stuck in one of the grief stages? I just don't know. I've never done this grief thing before. Then there's this other part of me that thinks, I want to think about her every day. She is a part of my life. She will always be a part of my life. I don't have to get over her.
Then I started worrying about my marriage. What if Jeremy gets tired of hearing me talk about how I miss her? I'm going to miss her for the rest of my life! There is still a part of me that's scared that how we deal with the grief of Harper's loss will cause problems for us in our marriage. I'm really not basing that fear on anything that's happened so far (thank God - seriously). It's just a fear. I know that it's these types of things that can cause marriages to end.
Really, when I look at our marriage though, I can see that what's happened hasn't torn us apart but that we've grown closer together. It takes vigilance though. It really does. There has been so much sadness shared in our home. Oh, when I think back to when the wounds were fresh and raw. I can see how far I've come in the grieving. The first few weeks when I couldn't get out of bed and broke down sobbing out of the blue several times a day, Jeremy was right there holding me and comforting me. I was so fragile. I'm stronger now.
I wish there was something wonderful that I could do for Jeremy, not because I feel obligated or because I feel bad for what we've been through, but because I would love to see that he wasn't worrying any more. He's been on orange alert for so long; too long. The thought that me getting strong and healthy helps relieve his stress is a great motivator for me.
I'm fighting with the "shoulds" in my mind today. All day long I was thinking about Harper, wondering, "Should I still be missing her and thinking about her this much?" Am I stuck in one of the grief stages? I just don't know. I've never done this grief thing before. Then there's this other part of me that thinks, I want to think about her every day. She is a part of my life. She will always be a part of my life. I don't have to get over her.
Then I started worrying about my marriage. What if Jeremy gets tired of hearing me talk about how I miss her? I'm going to miss her for the rest of my life! There is still a part of me that's scared that how we deal with the grief of Harper's loss will cause problems for us in our marriage. I'm really not basing that fear on anything that's happened so far (thank God - seriously). It's just a fear. I know that it's these types of things that can cause marriages to end.
Really, when I look at our marriage though, I can see that what's happened hasn't torn us apart but that we've grown closer together. It takes vigilance though. It really does. There has been so much sadness shared in our home. Oh, when I think back to when the wounds were fresh and raw. I can see how far I've come in the grieving. The first few weeks when I couldn't get out of bed and broke down sobbing out of the blue several times a day, Jeremy was right there holding me and comforting me. I was so fragile. I'm stronger now.
I wish there was something wonderful that I could do for Jeremy, not because I feel obligated or because I feel bad for what we've been through, but because I would love to see that he wasn't worrying any more. He's been on orange alert for so long; too long. The thought that me getting strong and healthy helps relieve his stress is a great motivator for me.
Monday, March 16, 2009
Some day . . .
March 16, 2009
On my drive in to work this morning I was thinking about my answer to the question, "Have you been feeling her move?" While I was in the hospital before we lost Harper, feeling her move inside me was one of the guaranteed ways to get a smile on my face. It reminded me of what I was fighting for. It was while I was in the hospital that we found out she was a girl too. I was excited to name her Harper after Nelle Harper Lee.
Every day the OB's would come to my room and we would get to hear her heartbeat. It was always beating so fast. I loved that sound. That will always be one of the most beautiful sounds in the world to me. For a couple of days before I knew that she had died, the OB's would ask me, "Have you been feeling her move?" I hadn't. I didn't realize that meant something. Everything was going haywire with my body. I had one hundred pounds of fluid on me. The doctors couldn't run tests on me because the fluid distorted so many of the results. I figured that if I wasn't feeling her move it was because I couldn't feel her through all the fluid. The damn fluid.
The day we found out she had died they were doing an ultrasound. They were having a hard time locating her through the fluid. I was tense. But then when they found her I thought, "Well there she is, everything is okay." Like if she had died she would no longer have been inside me. It took the doctor explaining to me that her little heart wasn't beating any longer for me to understand that even though her 14 ounce body was still there, she was no longer alive. That's why I hadn't been feeling her move.
I wish I could go back and pay closer attention to what she felt like the last time I felt her move. But then again, I guess that's the least of my wishes.
It's strange to have been pregnant and not have a child to show for it. My body has experienced this miracle, but in a distorted sort of way. I will never stop wishing that Harper's daddy, grandparents, uncles and aunts would have gotten to experience her the way I did. No one but me felt her move. It doesn't seem fair that they didn't get to feel her.
She made such an impact for having such a short little life. One day will you all get to know her? Will I get to beam with pride at the souls of my loved ones getting to know her? I wish you could have seen her. She was perfect and beautiful. Every part of her was perfectly formed, just so very small. Some day . . .
On my drive in to work this morning I was thinking about my answer to the question, "Have you been feeling her move?" While I was in the hospital before we lost Harper, feeling her move inside me was one of the guaranteed ways to get a smile on my face. It reminded me of what I was fighting for. It was while I was in the hospital that we found out she was a girl too. I was excited to name her Harper after Nelle Harper Lee.
Every day the OB's would come to my room and we would get to hear her heartbeat. It was always beating so fast. I loved that sound. That will always be one of the most beautiful sounds in the world to me. For a couple of days before I knew that she had died, the OB's would ask me, "Have you been feeling her move?" I hadn't. I didn't realize that meant something. Everything was going haywire with my body. I had one hundred pounds of fluid on me. The doctors couldn't run tests on me because the fluid distorted so many of the results. I figured that if I wasn't feeling her move it was because I couldn't feel her through all the fluid. The damn fluid.
The day we found out she had died they were doing an ultrasound. They were having a hard time locating her through the fluid. I was tense. But then when they found her I thought, "Well there she is, everything is okay." Like if she had died she would no longer have been inside me. It took the doctor explaining to me that her little heart wasn't beating any longer for me to understand that even though her 14 ounce body was still there, she was no longer alive. That's why I hadn't been feeling her move.
I wish I could go back and pay closer attention to what she felt like the last time I felt her move. But then again, I guess that's the least of my wishes.
It's strange to have been pregnant and not have a child to show for it. My body has experienced this miracle, but in a distorted sort of way. I will never stop wishing that Harper's daddy, grandparents, uncles and aunts would have gotten to experience her the way I did. No one but me felt her move. It doesn't seem fair that they didn't get to feel her.
She made such an impact for having such a short little life. One day will you all get to know her? Will I get to beam with pride at the souls of my loved ones getting to know her? I wish you could have seen her. She was perfect and beautiful. Every part of her was perfectly formed, just so very small. Some day . . .
Sunday, March 15, 2009
Today is a new day
March 15, 2009
Yesterday I had an interesting experience. A fascinating woman named Jean who lives in one of the retirement communities that my dad is president of came to our home to meet Jeremy and me. She also just happens to be 87 years old. She was beautiful, down to earth, and has led this amazing life. She spent less than an hour with us, but I wanted more. I wanted to learn from her. I ached to know how she has managed to live to 87 years and still had a smile on her face, was still open to meeting new people, but more than that, how she seemed not to be afraid.
I took a three hour nap yesterday. I slept hard. It felt so good. When I woke up it was time to get ready to go to a wine tasting party friends were having. I reconnected with a part of myself when I was socializing. I met new people. I felt like I was "normal" again. On the drive home from the party I thought about how important it is to have social connections. That sense of community means so much.
I had a restless night's sleep last night. My dreams lately have had touches of reality in them so I have to really think whether what happened was a dream or not. I dreamt that I was talking to someone about Harper and that I started sobbing telling them how much I missed her. The closer I get to the year anniversary of her birth the more distant I feel from her and it panics me.
Today is a new day. It's been a decadent morning so far. When I woke up Jeremy was just returning from a trip to Starbucks with iced mochas for us. He then fired up the waffle maker and made waffles with milk chocolate chips in them. With full tummies we headed out into the cool morning air and jumped in the hot-tub. It was so relaxing. So here I am now, wrapped up tight in my robe and snuggled under thick blankets, ready to drift back to sleep for a bit longer.
Yesterday I had an interesting experience. A fascinating woman named Jean who lives in one of the retirement communities that my dad is president of came to our home to meet Jeremy and me. She also just happens to be 87 years old. She was beautiful, down to earth, and has led this amazing life. She spent less than an hour with us, but I wanted more. I wanted to learn from her. I ached to know how she has managed to live to 87 years and still had a smile on her face, was still open to meeting new people, but more than that, how she seemed not to be afraid.
I took a three hour nap yesterday. I slept hard. It felt so good. When I woke up it was time to get ready to go to a wine tasting party friends were having. I reconnected with a part of myself when I was socializing. I met new people. I felt like I was "normal" again. On the drive home from the party I thought about how important it is to have social connections. That sense of community means so much.
I had a restless night's sleep last night. My dreams lately have had touches of reality in them so I have to really think whether what happened was a dream or not. I dreamt that I was talking to someone about Harper and that I started sobbing telling them how much I missed her. The closer I get to the year anniversary of her birth the more distant I feel from her and it panics me.
Today is a new day. It's been a decadent morning so far. When I woke up Jeremy was just returning from a trip to Starbucks with iced mochas for us. He then fired up the waffle maker and made waffles with milk chocolate chips in them. With full tummies we headed out into the cool morning air and jumped in the hot-tub. It was so relaxing. So here I am now, wrapped up tight in my robe and snuggled under thick blankets, ready to drift back to sleep for a bit longer.
Friday, March 13, 2009
That's what we're going to do
March 13, 2009
I had my dilation this morning. It went okay. The nurse couldn't get my IV in the first time so someone else had to come and poke me again. I've been doing okay with that kind of thing these days, but for some reason today I got a little queasy and tense. When they finally wheeled me into the procedure room and gave me the good drugs I didn't fight to stay alert, I shut my eyes and relaxed. I don't remember any thing after that.
Dr. T hadn't yet talked with Dr. G. She said "I'm pretty sure he'll agree with me about doing the surgery." She said she just wants to hold off as long as we can before doing it, so if we need to keep doing the dilations to bide our time, then that's what we'll do. So that's what we're going to do.
So I've been feeling okay about my body these days. I've been viewing it from a sort of detached place. I've put on a few pounds so I'm not looking so sickly. Still, I need frequent reassurance from Jeremy. "Are you sure you still find me attractive?" I asked as I point to the scars and sagging skin on my legs.
"Abby, more often than not when I look at your legs I'm reminded of the sacrifice that you made and I think that's beautiful." He's a good man that husband of mine. I think I'm starting to believe him when he says those things to me.
After I took my two and a half hour nap today Jeremy and I went out and got a bite to eat and ran a couple of errands. We were easy with each other. We chatted about this and that. He made me laugh, I tried to make him laugh. I just felt so much like we were two best friends hanging out together. It made me happy.
I had my dilation this morning. It went okay. The nurse couldn't get my IV in the first time so someone else had to come and poke me again. I've been doing okay with that kind of thing these days, but for some reason today I got a little queasy and tense. When they finally wheeled me into the procedure room and gave me the good drugs I didn't fight to stay alert, I shut my eyes and relaxed. I don't remember any thing after that.
Dr. T hadn't yet talked with Dr. G. She said "I'm pretty sure he'll agree with me about doing the surgery." She said she just wants to hold off as long as we can before doing it, so if we need to keep doing the dilations to bide our time, then that's what we'll do. So that's what we're going to do.
So I've been feeling okay about my body these days. I've been viewing it from a sort of detached place. I've put on a few pounds so I'm not looking so sickly. Still, I need frequent reassurance from Jeremy. "Are you sure you still find me attractive?" I asked as I point to the scars and sagging skin on my legs.
"Abby, more often than not when I look at your legs I'm reminded of the sacrifice that you made and I think that's beautiful." He's a good man that husband of mine. I think I'm starting to believe him when he says those things to me.
After I took my two and a half hour nap today Jeremy and I went out and got a bite to eat and ran a couple of errands. We were easy with each other. We chatted about this and that. He made me laugh, I tried to make him laugh. I just felt so much like we were two best friends hanging out together. It made me happy.
Thursday, March 12, 2009
Maybe tomorrow
March 12, 2009
My mind has been swirling lately. So many thoughts, I don't even know where to start. Last week they discovered a "cyst" on my mom's kidney when she was in the hospital for chest pains. While her heart checked out okay as far as they could tell, the cyst has turned out to be a large growth that her doctor believes is cancer. She is going to have to have her kidney removed. We're looking at the surgery being the first week in April. As far as we know now, the cancer hasn't spread. She won't have to do chemo. The removal of the kidney and the growth should eradicate it.
I hate it that my mom has to go through this. I hate it that I'm not able to do more for her. It's so hard to be helpless. I'm angry that this is happening.
I've had a lot of anxiety this week about my dilation appointment tomorrow. I'm always nervous and afraid beforehand. Hopefully Dr. T and Dr. G will have talked and they will have come up with some type of plan for action.
You know, I've been writing about all the thoughts that are going through my mind. I think I'm avoiding the feelings. It's a survival tactic really. I just can't go there emotionally right now. Too much. Too much. Maybe tomorrow.
My mind has been swirling lately. So many thoughts, I don't even know where to start. Last week they discovered a "cyst" on my mom's kidney when she was in the hospital for chest pains. While her heart checked out okay as far as they could tell, the cyst has turned out to be a large growth that her doctor believes is cancer. She is going to have to have her kidney removed. We're looking at the surgery being the first week in April. As far as we know now, the cancer hasn't spread. She won't have to do chemo. The removal of the kidney and the growth should eradicate it.
I hate it that my mom has to go through this. I hate it that I'm not able to do more for her. It's so hard to be helpless. I'm angry that this is happening.
I've had a lot of anxiety this week about my dilation appointment tomorrow. I'm always nervous and afraid beforehand. Hopefully Dr. T and Dr. G will have talked and they will have come up with some type of plan for action.
You know, I've been writing about all the thoughts that are going through my mind. I think I'm avoiding the feelings. It's a survival tactic really. I just can't go there emotionally right now. Too much. Too much. Maybe tomorrow.
Tuesday, March 10, 2009
The birth of comedy
March 10, 2009
I feel like I just need to sigh. I need a moment of quiet right now. I need to still myself and just listen. This is the time, right now, when I can decide where my attitude is going to be.
I've been trying too hard to keep it together today. I feel a torrent moving through me, crashing up against me, trying to break out. The odd thing? I want to laugh. I want to laugh because sometimes what life throws at us is just so much it's almost funny. I want to laugh and I want to scream and I want to curse. "IS THAT ALL YOU'VE GOT?!!" I want to yell at the universe, at God; "Bring it on God! If you're going try me, then TRY me!"
Isn't this where comedy is born?
I feel like I just need to sigh. I need a moment of quiet right now. I need to still myself and just listen. This is the time, right now, when I can decide where my attitude is going to be.
I've been trying too hard to keep it together today. I feel a torrent moving through me, crashing up against me, trying to break out. The odd thing? I want to laugh. I want to laugh because sometimes what life throws at us is just so much it's almost funny. I want to laugh and I want to scream and I want to curse. "IS THAT ALL YOU'VE GOT?!!" I want to yell at the universe, at God; "Bring it on God! If you're going try me, then TRY me!"
Isn't this where comedy is born?
Monday, March 9, 2009
It's a start anyway
March 9, 2009
Today has been a good day; practically pain free! I found myself feeling anxious about whether my good feeling was going to leave me or not throughout the day. That's just so stupid! I'm really working on changing my perspective about all that I've been through. Talking through things with a few different people has really helped me with this (so know that these aren't all original thoughts!).
There isn't going to be some final, magic, cure to everything I've been through. It's not like I'm going to take a medication or have a surgery and then everything will be okay. This healing thing is a process (haven't I learned that yet?). I'm much better off today than I was a year ago. Bumps in the road don't have to mean my world is falling apart.
We saw Dr. G (GI doc) this afternoon. Basically he said he didn't want to make any changes until he got to talk with Dr. T (which they've been trying to do). He said the fact that we've done so many dilations and it hasn't stayed dilated does sound like revision surgery is going to be necessary to change that. He also agreed that the pouchitis could have been caused by my inability to evacuate completely because of the stricture at the opening of the pouch, leaving bacteria there in the pouch to grow. He said he would try to talk with Dr. T by my appointment with her on Friday. Finally, he told me how to get in to see him if I need to before my next appointment with him (which had been a major frustration for me). All in all I am still feeling like I'm going to get through this eventually.
On another topic, there are some things I think I've been really hard on myself about too that I'm trying to let go of. One is that I have felt guilty that I didn't come to a place of acceptance with having the ileostomy before I was able to get rid of it. You know what, I don't think it's something that I need to accept! It's okay that I hated it. It's okay that I'm relieved that I don't have to have a bag attached to me any more. It doesn't mean God is conspiring to punish me for my vanity and is going to make me have one again. I don't believe that's who God is anyway. I need to trust that.
The other thing is that I've had to face many of my own judgments that I've held - judgements about beauty and appearance most of all. I have felt an incredible sense of guilt for thinking things about people's appearance. I realized the other night when I was talking with Dr. N that although I thought things about people and how they looked, I have always done my best not to gossip or make remarks or treat people any differently because of their appearance. I guess I'm realizing that I could be a little easier on myself about that. We all think and notice things about other people. The things that I notice have never been the deciding factor in whether I would befriend someone or not. I think that's what matters.
So I'm trying to let up on myself a little bit. I don't think I would be nearly as hard on a loved one who was going through what I've been through as I am on myself. Realizing and doing are two different things though, aren't they? Perhaps this is where I need to start putting this new found faith of mine into action. Is this something that I can ask this God of mine to help me with? I don't even know what it would mean to do that at this point. Is it just like cognitive therapy - when I start to think about how guilty I feel, ask God to help me not feel guilty? Sometimes I'm still a little skeptical about prayer. I don't know what God hears or acts on or what he cares about. Sounds pretty bad huh? It's true. But at least I'm to a place where I believe that He exists!! Not only that, I believe that I'm experiencing God every time I experience love. I believe that I'm experiencing God every time I experience forgiveness. I believe I'm experiencing God every time something good or beautiful happens. It's a start anyway!
Today has been a good day; practically pain free! I found myself feeling anxious about whether my good feeling was going to leave me or not throughout the day. That's just so stupid! I'm really working on changing my perspective about all that I've been through. Talking through things with a few different people has really helped me with this (so know that these aren't all original thoughts!).
There isn't going to be some final, magic, cure to everything I've been through. It's not like I'm going to take a medication or have a surgery and then everything will be okay. This healing thing is a process (haven't I learned that yet?). I'm much better off today than I was a year ago. Bumps in the road don't have to mean my world is falling apart.
We saw Dr. G (GI doc) this afternoon. Basically he said he didn't want to make any changes until he got to talk with Dr. T (which they've been trying to do). He said the fact that we've done so many dilations and it hasn't stayed dilated does sound like revision surgery is going to be necessary to change that. He also agreed that the pouchitis could have been caused by my inability to evacuate completely because of the stricture at the opening of the pouch, leaving bacteria there in the pouch to grow. He said he would try to talk with Dr. T by my appointment with her on Friday. Finally, he told me how to get in to see him if I need to before my next appointment with him (which had been a major frustration for me). All in all I am still feeling like I'm going to get through this eventually.
On another topic, there are some things I think I've been really hard on myself about too that I'm trying to let go of. One is that I have felt guilty that I didn't come to a place of acceptance with having the ileostomy before I was able to get rid of it. You know what, I don't think it's something that I need to accept! It's okay that I hated it. It's okay that I'm relieved that I don't have to have a bag attached to me any more. It doesn't mean God is conspiring to punish me for my vanity and is going to make me have one again. I don't believe that's who God is anyway. I need to trust that.
The other thing is that I've had to face many of my own judgments that I've held - judgements about beauty and appearance most of all. I have felt an incredible sense of guilt for thinking things about people's appearance. I realized the other night when I was talking with Dr. N that although I thought things about people and how they looked, I have always done my best not to gossip or make remarks or treat people any differently because of their appearance. I guess I'm realizing that I could be a little easier on myself about that. We all think and notice things about other people. The things that I notice have never been the deciding factor in whether I would befriend someone or not. I think that's what matters.
So I'm trying to let up on myself a little bit. I don't think I would be nearly as hard on a loved one who was going through what I've been through as I am on myself. Realizing and doing are two different things though, aren't they? Perhaps this is where I need to start putting this new found faith of mine into action. Is this something that I can ask this God of mine to help me with? I don't even know what it would mean to do that at this point. Is it just like cognitive therapy - when I start to think about how guilty I feel, ask God to help me not feel guilty? Sometimes I'm still a little skeptical about prayer. I don't know what God hears or acts on or what he cares about. Sounds pretty bad huh? It's true. But at least I'm to a place where I believe that He exists!! Not only that, I believe that I'm experiencing God every time I experience love. I believe that I'm experiencing God every time I experience forgiveness. I believe I'm experiencing God every time something good or beautiful happens. It's a start anyway!
Sunday, March 8, 2009
I can do this
March 8, 2009
I think the weight of the news I got on Friday hit me this morning; ulcerative colitis, pouchitis, and dilation. I feel overwhelmed by it almost more emotionally than I do physically. My poor body. But as my brother said in a little pep talk today, they are three issues that can broken down and dealt with individually. This is true.
I'm trying to gear up mentally for work tomorrow. Life can be good - will be good - is good. Be an inspiration Abby, not a victim - right? I have family and friends who love me. I have a wonderful job that I love and I work with incredible people. And my husband, don't even get me started on my husband!! I can do this. I can do this.
I think the weight of the news I got on Friday hit me this morning; ulcerative colitis, pouchitis, and dilation. I feel overwhelmed by it almost more emotionally than I do physically. My poor body. But as my brother said in a little pep talk today, they are three issues that can broken down and dealt with individually. This is true.
I'm trying to gear up mentally for work tomorrow. Life can be good - will be good - is good. Be an inspiration Abby, not a victim - right? I have family and friends who love me. I have a wonderful job that I love and I work with incredible people. And my husband, don't even get me started on my husband!! I can do this. I can do this.
Friday, March 6, 2009
Plugging away
March 6, 2009
I know it's been a few days since I last blogged. I haven't felt very well this week. I had my appointment with Dr. T on Wednesday. She didn't say anything about "cryptitis." She said that the results of the biopsy showed my rectum was pretty seriously flared with ulcerative colitis. She also said that my pouch looked really good. I told her I was having a tough time and felt like I needed to be dilated again, so we scheduled a dilation for today. I asked her if she is pretty certain I'm going to need another surgery and she said yes. It's just a matter of timing. She wants to wait as long as she can because that's healthier for me.
Jeremy and I went in early this morning for the dilation. For some reason the meds didn't work quite as well and I felt some pain during the procedure, and I remember the pain and the entire procedure too, which usually I don't. She said the opening had definitely closed up and needed to be dilated. She said we should probably start doing the dilations on a regular basis again, but we'll try doing it every two weeks instead of every week (although I'll go next week because she won't be available the following Friday).
While she had the scope in me Dr. T took a look at my pouch and said it didn't look good - that I definitely have pouchitis now too. When we were all done, she said that she would probably look at doing the surgery in June or July, but she wanted to talk with Dr. G (my GI doc). She knows I have an appointment with him on Monday too. She had told us on Wednesday about the possibility of doing the surgery by going up through my rectum instead of cutting me open abdominally. Apparently that's something she needs to research a little more and talk with some more experienced surgeons about. I'm hopeful about that. If that could happen, it would mean I wouldn't have to have an ileostomy again. But Jeremy is telling me not to get my hopes up because it sounded to him like that was a long-shot. We'll see . . .
I'm really exhausted right now. I've been in a lot of pain this week. On top of my health issues, my mom is having some health problems that are scary to me. I'm trying to take it all a step at a time and sort through everything as we get answers, but it's been hard.
With everything, I have to say that it has been a sweet week for me emotionally in a way. My birthday was on Wednesday and people were so generous and so many people have said kind things to me - it's really buoyed me emotionally. I wonder if people have any idea how much their little words of kindness mean? I sure hope so.
I think an attitude of resignation has set in for me at this point too. I'm very tired of being in pain. I want to do whatever needs to be done for me to feel better again. It seems like my poor body just can't get it together!! But I'll keep plugging away!
I know it's been a few days since I last blogged. I haven't felt very well this week. I had my appointment with Dr. T on Wednesday. She didn't say anything about "cryptitis." She said that the results of the biopsy showed my rectum was pretty seriously flared with ulcerative colitis. She also said that my pouch looked really good. I told her I was having a tough time and felt like I needed to be dilated again, so we scheduled a dilation for today. I asked her if she is pretty certain I'm going to need another surgery and she said yes. It's just a matter of timing. She wants to wait as long as she can because that's healthier for me.
Jeremy and I went in early this morning for the dilation. For some reason the meds didn't work quite as well and I felt some pain during the procedure, and I remember the pain and the entire procedure too, which usually I don't. She said the opening had definitely closed up and needed to be dilated. She said we should probably start doing the dilations on a regular basis again, but we'll try doing it every two weeks instead of every week (although I'll go next week because she won't be available the following Friday).
While she had the scope in me Dr. T took a look at my pouch and said it didn't look good - that I definitely have pouchitis now too. When we were all done, she said that she would probably look at doing the surgery in June or July, but she wanted to talk with Dr. G (my GI doc). She knows I have an appointment with him on Monday too. She had told us on Wednesday about the possibility of doing the surgery by going up through my rectum instead of cutting me open abdominally. Apparently that's something she needs to research a little more and talk with some more experienced surgeons about. I'm hopeful about that. If that could happen, it would mean I wouldn't have to have an ileostomy again. But Jeremy is telling me not to get my hopes up because it sounded to him like that was a long-shot. We'll see . . .
I'm really exhausted right now. I've been in a lot of pain this week. On top of my health issues, my mom is having some health problems that are scary to me. I'm trying to take it all a step at a time and sort through everything as we get answers, but it's been hard.
With everything, I have to say that it has been a sweet week for me emotionally in a way. My birthday was on Wednesday and people were so generous and so many people have said kind things to me - it's really buoyed me emotionally. I wonder if people have any idea how much their little words of kindness mean? I sure hope so.
I think an attitude of resignation has set in for me at this point too. I'm very tired of being in pain. I want to do whatever needs to be done for me to feel better again. It seems like my poor body just can't get it together!! But I'll keep plugging away!
Tuesday, March 3, 2009
Yep, I'm a list person!
March 3, 2009
Does God answer my toilet prayers? That's what I want to know. "Oh God, oh God, oh God, help me, help me, help me," I plead as I sit on the toilet in pain. I've been hanging on the last couple of days because I know I have an appointment with Dr. T tomorrow. I'm pretty certain I'm going to need another dilation on Friday. A warm Epsom bath and Percocet have been my saving grace this evening.
I'm going to have a serious discussion with Dr. T tomorrow. Questions to ask:
1) What caused the cryptitis? (And I guess more to the point, explain to me what cryptitis is please.)
2) What do you think are the chances at this point that I'm going to need a revision to my pouch?
3) What are the chances that I'll end up with a permanent ileostomy if you revise my pouch?
4) With the defocography study on the 27th, are we only looking for nerve damage, or might it tell us something else?
5) If there is nerve damage, is a revision surgery the only option?
6) Why do I seem to feel so much better every time I take the Cipro? What do you think it's treating?
7) Where is my pouch located on my torso? Is the lower abdomen pain that I have pouch pain?
8) I've read that 25% of women who have a total colectomy due to ulcerative colitis are infertile. What's that about?
9) What would pregnancy do to my body? What risks would be involved with pregnancy because of what I've been through.
10) Why would we need to wait a year before a revision surgery if scar tissue forms and people technically "heal" after six weeks from major surgery?
Oh, I'm so glad I made this list. Hopefully it'll help me sleep better tonight. I so need a good night's sleep. Last night I woke up (to go to the bathroom) at 11, 1, 2, 3, 4:30, 5:30. Ugh. It's so much harder to deal with the pain when I'm tired out. Somehow I managed to do it today. Let's hope tomorrow is better.
Here's to hope!!
Does God answer my toilet prayers? That's what I want to know. "Oh God, oh God, oh God, help me, help me, help me," I plead as I sit on the toilet in pain. I've been hanging on the last couple of days because I know I have an appointment with Dr. T tomorrow. I'm pretty certain I'm going to need another dilation on Friday. A warm Epsom bath and Percocet have been my saving grace this evening.
I'm going to have a serious discussion with Dr. T tomorrow. Questions to ask:
1) What caused the cryptitis? (And I guess more to the point, explain to me what cryptitis is please.)
2) What do you think are the chances at this point that I'm going to need a revision to my pouch?
3) What are the chances that I'll end up with a permanent ileostomy if you revise my pouch?
4) With the defocography study on the 27th, are we only looking for nerve damage, or might it tell us something else?
5) If there is nerve damage, is a revision surgery the only option?
6) Why do I seem to feel so much better every time I take the Cipro? What do you think it's treating?
7) Where is my pouch located on my torso? Is the lower abdomen pain that I have pouch pain?
8) I've read that 25% of women who have a total colectomy due to ulcerative colitis are infertile. What's that about?
9) What would pregnancy do to my body? What risks would be involved with pregnancy because of what I've been through.
10) Why would we need to wait a year before a revision surgery if scar tissue forms and people technically "heal" after six weeks from major surgery?
Oh, I'm so glad I made this list. Hopefully it'll help me sleep better tonight. I so need a good night's sleep. Last night I woke up (to go to the bathroom) at 11, 1, 2, 3, 4:30, 5:30. Ugh. It's so much harder to deal with the pain when I'm tired out. Somehow I managed to do it today. Let's hope tomorrow is better.
Here's to hope!!
Monday, March 2, 2009
Sitting with the silence
March 2, 2009
I stayed home from work sick today. Last night was just a rough night. I got some very good rest today. Around 11:30 this morning I fell asleep on the couch reading my book. I felt the sleepiness cover me like a warm blanket and set my book down just in time to be taken under. I was in this strange state of awareness as I fell asleep. I felt this peace come over me and I wondered if I was dying. I wasn't scared or panicked about it. I kind of welcomed it; the peace that is, and if the peace was associated with dying then I guess I was welcoming that too. It was a very odd experience.
Hmmm . . . just now as I'm writing this I was thinking about the fact that the only other time I experienced anything like that was when I believe Harper passed away. The part of me that wants desperately to have some supernatural experience with her wonders if that was in fact her spirit visiting me. Whatever it was, I wish I could feel it more often. Maybe I don't let enough silence into my life to experience it more often. There are a lot of ways to distract oneself from pain in this world. Sitting with the silence is not one of them. But it's what I did a lot of today, and it was healing for me. I wasn't afraid.
I stayed home from work sick today. Last night was just a rough night. I got some very good rest today. Around 11:30 this morning I fell asleep on the couch reading my book. I felt the sleepiness cover me like a warm blanket and set my book down just in time to be taken under. I was in this strange state of awareness as I fell asleep. I felt this peace come over me and I wondered if I was dying. I wasn't scared or panicked about it. I kind of welcomed it; the peace that is, and if the peace was associated with dying then I guess I was welcoming that too. It was a very odd experience.
Hmmm . . . just now as I'm writing this I was thinking about the fact that the only other time I experienced anything like that was when I believe Harper passed away. The part of me that wants desperately to have some supernatural experience with her wonders if that was in fact her spirit visiting me. Whatever it was, I wish I could feel it more often. Maybe I don't let enough silence into my life to experience it more often. There are a lot of ways to distract oneself from pain in this world. Sitting with the silence is not one of them. But it's what I did a lot of today, and it was healing for me. I wasn't afraid.
Sunday, March 1, 2009
One, two, three, four, five . . .
March 1, 2009
I had a couple of really good days this weekend. Both Friday and Saturday I felt good. Today has been a little tougher, but I'm still hoping there will be more good days to come. I have an appointment with Dr. T on Wednesday afternoon, so even though I'm not feeling well today, I'm not too panicked about it because I know I'll get to talk with her.
When I met with Dr. N on Thursday evening we talked some about my anxiety. I told him that I felt like I had a panic attack the other night and that I've been counting a lot more lately. He asked if I do anything behaviorally to deal with the counting. I told him that I just tell myself STOP and then I stop the counting. He told me to start paying attention to what it is that I'm feeling and thinking when I catch myself counting. So I've been trying to do that.
Maybe I should explain the counting thing. For as far back as I can remember I've counted things; my teeth, my fingers, my breaths, my footsteps, how many times I chew my food, the number of times the phone rings, any other sound that is repetitive, etc., etc. I might also spell words over and over in my mind (or with my hands because I know sign language). There are a few other things like that that I do. Normally, it's just something that I notice that I do and it doesn't really bother me. It's just one of my quirks. But at times when I've had serious bouts of depression my counting also gets worse. It reaches a point where I'm very aware that I'm counting all the time and I can't get myself to stop. I get a little frantic in wanting my mind to relax, but it just can't. (I think I do actually meet the criteria for being diagnosed with Obsessive Compulsive Disorder, but for some reason this diagnosis is not one I'm ashamed of. I think it is kind of quirky and interesting and besides, most people who are diagnosed with it are pretty intelligent - smile.)
So in trying to pay attention to what I'm thinking and feeling when I catch myself counting I realized that I'm thinking about my health. I know, that's not really a shocker at all. Of course I get anxious when I think about my health. But taking it further, I have a very deep fear that I'm going to have to have an ostomy bag again. I'm terrified of it. I look back over the eight months that I had one attached to me and I have no idea how I managed. I actually stood in front of close to sixty people and taught a class at work with a bag attached to me. You know how you scrutinize people when they are speaking in front of you (more from boredom than from being critical, but still)? I can't believe that I did that.
I have this feeling that there is a lesson that God or the universe or whatever wants me to learn and that I haven't learned it yet. This time without an ostomy bag has just been a respite for me, because God knew I needed a break. But I didn't learn what I was supposed to learn and so things are going to happen to me so I'll learn it; that beauty doesn't matter. Then I take this all another step further and I think that if I end up with another ostomy, I brought it on myself! Isn't this just messed up? But it's what's going on in my head. Some how I have this deeply ingrained belief that I deserved all that I've been through. I don't know how to let go of that feeling. Ahhhhhh!
Jeremy and I had a sweet moment of peace together this weekend. He had just gotten home from playing tennis and drinking beer with a buddy (not simultaneously - I don't think). I had gotten back from a wonderful coffee with a friend. I had a new mix CD playing and sat down on the couch in our sitting area off the kitchen. Jeremy laid down on the couch and put his sunburned head on my lap. The back door was open so we could hear the water from our fountain. We started talking about Harper. It was sweet. She was with us in spirit. We both cried as we talked. I realized that while we both have been grieving in our own separate ways, the coming together to grieve together is important too. I need that. It's a tough thing to balance or to even know how to balance, but I think we're figuring it out.
I had a couple of really good days this weekend. Both Friday and Saturday I felt good. Today has been a little tougher, but I'm still hoping there will be more good days to come. I have an appointment with Dr. T on Wednesday afternoon, so even though I'm not feeling well today, I'm not too panicked about it because I know I'll get to talk with her.
When I met with Dr. N on Thursday evening we talked some about my anxiety. I told him that I felt like I had a panic attack the other night and that I've been counting a lot more lately. He asked if I do anything behaviorally to deal with the counting. I told him that I just tell myself STOP and then I stop the counting. He told me to start paying attention to what it is that I'm feeling and thinking when I catch myself counting. So I've been trying to do that.
Maybe I should explain the counting thing. For as far back as I can remember I've counted things; my teeth, my fingers, my breaths, my footsteps, how many times I chew my food, the number of times the phone rings, any other sound that is repetitive, etc., etc. I might also spell words over and over in my mind (or with my hands because I know sign language). There are a few other things like that that I do. Normally, it's just something that I notice that I do and it doesn't really bother me. It's just one of my quirks. But at times when I've had serious bouts of depression my counting also gets worse. It reaches a point where I'm very aware that I'm counting all the time and I can't get myself to stop. I get a little frantic in wanting my mind to relax, but it just can't. (I think I do actually meet the criteria for being diagnosed with Obsessive Compulsive Disorder, but for some reason this diagnosis is not one I'm ashamed of. I think it is kind of quirky and interesting and besides, most people who are diagnosed with it are pretty intelligent - smile.)
So in trying to pay attention to what I'm thinking and feeling when I catch myself counting I realized that I'm thinking about my health. I know, that's not really a shocker at all. Of course I get anxious when I think about my health. But taking it further, I have a very deep fear that I'm going to have to have an ostomy bag again. I'm terrified of it. I look back over the eight months that I had one attached to me and I have no idea how I managed. I actually stood in front of close to sixty people and taught a class at work with a bag attached to me. You know how you scrutinize people when they are speaking in front of you (more from boredom than from being critical, but still)? I can't believe that I did that.
I have this feeling that there is a lesson that God or the universe or whatever wants me to learn and that I haven't learned it yet. This time without an ostomy bag has just been a respite for me, because God knew I needed a break. But I didn't learn what I was supposed to learn and so things are going to happen to me so I'll learn it; that beauty doesn't matter. Then I take this all another step further and I think that if I end up with another ostomy, I brought it on myself! Isn't this just messed up? But it's what's going on in my head. Some how I have this deeply ingrained belief that I deserved all that I've been through. I don't know how to let go of that feeling. Ahhhhhh!
Jeremy and I had a sweet moment of peace together this weekend. He had just gotten home from playing tennis and drinking beer with a buddy (not simultaneously - I don't think). I had gotten back from a wonderful coffee with a friend. I had a new mix CD playing and sat down on the couch in our sitting area off the kitchen. Jeremy laid down on the couch and put his sunburned head on my lap. The back door was open so we could hear the water from our fountain. We started talking about Harper. It was sweet. She was with us in spirit. We both cried as we talked. I realized that while we both have been grieving in our own separate ways, the coming together to grieve together is important too. I need that. It's a tough thing to balance or to even know how to balance, but I think we're figuring it out.
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