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?
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