Tuesday, December 29, 2009

Appetite

December 29, 2009

I bit off a piece of banana this morning and chewed it, deliberate bites. The bitterness lingered on my teeth after I had swallowed. Too green. Ick. And the memory of eating bananas (for the potassium and for the binding properties) took me to another place.

Deliberate bites. That's what you do when you have no appetite. You chew your food, longer than you should, because you don't want to swallow. Swallowing is hard to do. You can't even really tell if there's flavor in the food or not. Texture means nothing any more. You struggle with thoughts of the food getting lodged in your intestine. That would cause pain and possibly a hospitalization. So you chew. And you chew. And as you sit at your meal that takes longer than a meal has ever taken before, you begin to feel warmth against your side. You feel something move there, next to your skin, and you realize that the food that you have been eating for probably half an hour is now exiting your body, there at your stomach. And you try not to picture the liquid that quite possibly still has color or shape or even smell of the food you just put into your mouth, emptying into the bag that you are very aware of hanging off your stomach. And you know that it won't be long before you'll have to sit down on the toilet and open the end of the bag to empty the contents into the toilet, because you can feel the bag filling up. And when it's full, you head to the bathroom. You wad up toilet paper and put it in the toilet first. You learned the hard way that if you don't do that, you'll experience a little too up-close-and-personally what "backsplash" means. You unclip the plastic clip that miraculously keeps the bag closed. You fold the edges of the bag back over itself and with a quick, masterful motion point the bag into the toilet. And if the contents were liquid, then the bag is now empty. But if you ate something, like a banana or white bread, the contents probably didn't just empty easily into the toilet. No, in that case you have to push the contents out, as you would toothpaste from a tube, only your bag is many times larger than a tube of toothpaste. The bag is empty, but you're not done yet. You have to make sure the edges of the bag are clean so it won't smell. So you take toilet paper and fold it just so - the perfect shape to clean out the inside edges of the bag. And you wipe the bag off. And you hold it up because you can already feel it starting to fill again, and you clip the plastic clip over the end to keep it closed. And you know you'll be back here in an hour or so, doing the same thing again. But maybe, just maybe if you don't eat anything, you'll get a break. Because who wants to eat anyway?

Subsequent thoughts:

*I'm so thankful to have my appetite again and to be back at my "normal" weight. I didn't know until I lost my appetite how truly important the pleasure of food is.

*There was a time when I was pretty proud of how quickly I could manage this routine.

*Big deal Abby. Everyone goes to the bathroom. Your way was just a little different.

*I could do it again if I had to. I could.

Thursday, December 24, 2009

Stand your ground

December 24, 2009

Okay Abby. You can do this. You can. Get your head in the game girl.

And then, as if he was reading my mind, Jeremy put one of his new Tom Petty CDs in the player (and no, the song isn't new, but the live release is):

Well I won't back down,
no I won't back down
You can stand me up at the gates of hell,
but I won't back down

Gonna stand my ground,
won't be turned around
and I'll keep this world from draggin' me down
gonna stand my ground,
and I won't back down

Hey baby, there ain't no easy way out
hey I will stand my ground
and I won't back down

Well I know what's right,
I got just one life
in a world that keeps on pushin' me around
but I'll stand my ground and
I won't back down

That's right Abby. How about listening to this song this morning? This one will keep you going. Stand your ground girl. Stand your ground.

Wednesday, December 23, 2009

My very best

December 23, 2009

I'll admit it. Yesterday I indulged in a bit of "poor me" behavior on my way home from work. It started off innocently enough. I planned on stopping at Target to pick up a couple of last minute stocking stuffers for Jeremy (okay, Django too). As I pulled into the turn lane to enter the Target shopping area I gasped quietly to myself. I could be Christmas shopping for Harper this year. Hmmm . . . What would it be like? What toys would I be drawn to for her? What toys are there for 16 month old little girls? I decided I would peruse the toy section to see what I was missing out on. I know, I know. That really is just making things worse for myself isn't it? I know. I didn't actually make it to the toy section though. The children's clothing was as far as I got. It really was purposeful torture. I don't know why I did it. I don't know what sick need I was fulfilling in myself, but I browsed through the little girl Christmas dresses (what was left of them anyway). I chuckled to myself thinking about the fact that Harper would not have been in clothes typical for a 16 month old. No. She was a Cashman baby. She looked like a Cashman baby. Cashman babies are big babies. I'm sure she would have been wearing bigger-sized clothes. I was taken aback at how little girl and not baby the dresses were for her age. I reached out and touched one of the cotton PJ's that had the little footsies. It actually physically hurt me to touch them. I could see little arms and feet and a protruding toddler tummy fitting into them. I turned away quickly. That was it. That was all I could handle. Honestly though? As torturous as it sounds, it also was very reassuring to me. My daughter was not just a figment of my imagination. She was a real baby that I birthed. She was and is a part of our family. A part that I'm missing something awful this Christmas.

Last Christmas I had just gotten home from the hospital on the 22nd after my third surgery. My focus and energy was on my physical health and making it day to day. I cried for Harper on Christmas Day, but I had not yet really begun to grieve her. This year, the loss is everywhere. I cry every day on my way to work and most days on my way home. She's missing from everything. I am not sending out Christmas cards or photos or letters talking about all Harper did this year. I'm not facing the crowds at the stores to shop for her gifts. I'm not dolling her up for Christmas parties. I'm not staying up till after she's gone to bed to wrap presents and hide them in our closet till Christmas morning. We're not decorating Christmas cookies together. I'm not reading her Christmas stories or watching Christmas movies with her. We're not singing Jingle Bells together or Away in a Manger (with all the choreography). Her absence is everywhere for me. And the deeper we get into the holiday season the more I want to close my door and lock myself away from it all. It hurts and I'm sad. There's just no other way to put it.

So dear friends, please forgive me if you don't get cards or if I don't enter into the Christmas festivities this year. I'm doing my very best. I'm trying . . .

Tuesday, December 22, 2009

Who knew?

December 22, 2009

I want my old life back, I thought to myself yesterday. Who knew the holidays would be so hard? I didn't, that's for sure. I miss Harper every day. Every day. I've been having a hard time lately too because there's this annoying little voice in my head saying, You should be better than this by now. This shouldn't hurt so much any more. But it does. It all seems to unreal to me sometimes too. Was I really pregnant? Did I really wear maternity clothes and rest my hands on my protruding tummy? Was that really me? I went through it all, but I have no baby so sometimes it seems like something I dreamt, a story I wrote in my head. But then I see her footprints in my wallet, or hanging in a frame in our fireside room, or catch a glimpse of the photo album full of pictures of her and I remember that I didn't make this all up as a way to torture myself. No. It really happened.

I just haven't been feeling well physically lately either. As planned with Dr. G, I went off my Cipro last week and tried relying on probiotics to help my chronic pouchitis. It didn't take long for things to get bad. Just a couple of days and my bowel movements were like water, all day long, many times a day. I woke up in the morning on Friday with a headache, which turned to a nasty migraine by mid-morning. I think I was dehydrated. It was just too hard to keep up with all the fluid I was losing. I'm back on the Cipro. I'm still struggling with aching and cramping and some blood when I wipe. None of that's good. And my mind is just worn out from all the thinking and weighing the decision to have surgery. I'm just so exhausted.

I decided it was time to try to get in to see Dr. N for a little therapy again. I'm hoping he calls me back today. We'll see . . . I'd like to end this post with some up-beat comment about how I'm hanging in there, but I just don't feel like it. Sorry.

Saturday, December 19, 2009

My little girl

December 19, 2009

On Thursday I was at a client's home doing a home inspection as part of my work. One of the little girls sat on a couch opposite me and showed me her Build-A-Bear. I told her how much I liked it and asked her where she got it. She told me and then, looking me straight in the face, her head tilted: "Do you have a little girl?"

I froze for a moment. I sped through an internal dialogue: What do I say to this child? "None living?" No. I can't say that to a child. Adults, yes. Children, no. "Yes?" And then she'll ask me how old she is. I can't do that. Kids know when you're not telling them everything. I won't have any credibility with her.

"No," I finally sputtered out and I felt the heat rise around my neck. Every time I answer that question with a "no," I feel as though I'm betraying a huge part of myself. But I don't know what else to do. My adrenaline was pumping and I wanted to sob. But I didn't. I fumbled through some questions, trying to track what was being said around me, thankful for my colleague who stepped in and asked questions too until I could gain my footing again.

It wasn't until I got to my car to drive home that I began to sob.

The previous Saturday night we were driving back from Casa Grande after spending an evening with Jeremy's parents and sister, brother-in-law and his mother too. It was dark as we headed home. Jeremy and I were quiet and, I swear I wasn't hallucinating, but I thought Harper was in the back seat in her car seat. I thought she had just kissed her auntie and uncle and grandma and grandpa goodbye. I thought I had grabbed her diaper bag as Jeremy carried her in his arms to the car and fastened her in to her seat and she had fallen asleep. It was what should have been. I actually turned to look at our empty back seat to make sure that what I was dreaming was not true. It wasn't.

Sunday, December 13, 2009

A mere 365 days

December 13, 2009

Another painful anniversary this weekend. One year ago on Friday, I came home from work early, a complete mess. My ostomy bag had sprung a leak, not once, but twice. The first time I was prepared. I locked my office door, changed into my extra outfit that I carried around with me for such occasions (because they were happening more and more frequently), and changed my bag. When I changed my bag, it was quite painful. My skin stung so badly, and I knew I didn't get a good seal. My skin around my stoma (stoma = the part of my intestine that was sticking out of my abdomen) was looking bad. When my bag started leaking the second time, I wasn't prepared. I had already used my back-up supplies, so I let my boss know I had to leave, sobbing as I did so.

My dad and his wife where visiting for the weekend. We were going to celebrate Christmas together early. Dad's gift to us last year was that he laid brick around our fireplace and when I arrived home I found him finishing up the job, Jeremy and Barbara admiring his work. I headed straight to the bedroom and changed my clothes and my bag again. I was scared to move at that point. It seemed any movement caused my seal to break and a leak to occur. I honestly don't remember how many times I ended up changing my bag that night. The skin around my stoma was just too damaged to get any kind of a seal. We didn't know what to do. Jeremy e-mailed our ostomy nurse, Kelly (God bless her), and they tried to come up with ideas all evening long. If I remember correctly, Kelly even called us from her home to try to help us. Oh that meant so much . . .

Evening turned to night and things got worse. The bag kept leaking, and every time it did the output from my stoma spurted onto my skin which at that time had become almost an open wound. The pain was unbearable. I could sense the panic rising in Jeremy. We didn't know what to do. No bag would stick. I was laying in bed with chuck pads under me and basically cleaning up the almost constant output that was coming with paper towels, writhing in pain any time I didn't catch the liquid before it hit my skin. We couldn't keep up. I hollered for my dad and Barbara. Dry paper towels hurt on my skin, so Dad and Barbara kept warm, wet paper towels coming my way as Jeremy talked with Kelly on the phone. I was groaning and yelling the pain was so bad. I wasn't even concerned with getting a bag to stick anymore. I just wanted the pain to stop. Pain meds weren't helping. Kelly suggested I let warm water run over the stoma and my skin. (I was pretty sick around this time too. I was having a hard time staying hydrated, even with nightly IV fluids. I just couldn't eat and had lost so much weight. I was at the doctor's weekly and almost every week the scale read 3 pounds lighter than the week before. I was not in good shape.) I was too weak to stand in the shower, so Jeremy got a cooler and set it in the tub. I sat on the cooler, hunched over and let the warm water from the shower wash away the output that continued to spew out of my intestine onto my stomach. It stung at first and I sobbed, but within a few minutes, the pain subsided. I don't know how long I sat in the shower. I think it was like an hour and a half. I honestly don't know how we got through the night. I remember holding each new bag against my stomach, hoping that if I held it it would stay. I was exhausted and fell asleep at some point, only to wake up to the bag leaking again. I know I took another shower in the wee hours of the morning too. When morning came, we made our way to the Emergency Room. There was nothing that was working and I was at the end of my rope.

The ER doc was an idiot. He had no clue what was going on, but pretended to know. It was horrible. He told me there was nothing he could do and was going to send me home. I told him if he sent me home, I would be back because I could not live like this. And it was true. I was done. This weekend one year ago I had reached my limit. Of everything that had happened to me, I reached the end of my coping skills then. Had he given me any hope, I would have held on, but to tell me there was nothing he could do - that was it. There was no way in hell I could keep living like that, not even one more day. No way. If they didn't admit me to help me with what turned out to be a skin infection around my stoma, then they were going to be admitting me psychiatricaly within the next 24 hours, I knew that much. And I told my family that too. "I can't go on anymore," I said, sobbing. I don't know what my dad and Jeremy said to the doctor after that, but they admitted me to the observation unit after that.

I was there for a few days. Dr. T had just started on staff that week and Dr. V introduced her to me. He said she would be taking over my case as it was her specialty. She said she would look at the barium x-rays that had been done of my newly created j-pouch and see what she thought. If it looked like enough healing had occurred, she might go ahead and do my takedown surgery then, a month earlier than they normally do it. The takedown surgery meant I would no longer have my intestine sticking out of my abdomen. I would no longer need a bag attached to me. She was going to let me know the next morning. I prayed harder that night than I have ever prayed.

"I really don't know what I believe about the Bible or even about you God, but I do know that you promised that you wouldn't give me more than I can handle. I'm telling you right now, I think this is it. I don't think I can handle any more. Are you going to stick to your word?"

The next morning she came in and said the barium x-rays looked good and that she would go ahead and do the takedown surgery on me when a spot opened up in the surgery schedule that week. She said scar tissue had formed around the opening to my pouch, and she was going to have to try to dilate me at the beginning of the surgery. If the dilation took, she would be able to proceed, but if it didn't, I might still end up with an ostomy when I came to. Again, I prayed hard. I prepared myself for waking up from the surgery with a bag still attached to me. It was such a difficult way to go into surgery. I remember after I woke up from the surgery I kept asking the post-op nurse if I had a bag or not. I was so groggy. I also kept asking where Jeremy was. Finally when the anesthesia had worn off enough I realized the bag was gone and I started to cry.

Relief is just too simple of a word.

I cannot believe how far I've come in a year. A mere 365 days. It's unbelievable to me. I no longer look like the sickly, defeated woman I was then. I'm no longer that woman. I may still be trying to figure out who I am now, but at least I know I'm no longer her!

Wednesday, December 9, 2009

Support: In the form of a group

December 9, 2009

So I made my way to the Footprints support group last night for the first time. I had a headache that got worse and worse as the day worn on. By evening time it hurt to move. I wanted to curl up in the blankets and watch TV, but I knew I couldn't do that. Not last night. The group was all the way on the other side of town from me and I knew I wasn't going to get home until probably 10 p.m. All things I was telling myself as I drove there asking myself, Why are you doing this Abby? But then some song on the radio distracted me and low and behold, what did I start thinking about? Harper. Tears started coming. This is why you're doing this Abby.

As with any support group, the details are confidential, so I can't share with you things other people said (obviously). But what I can tell you is that it was the first time I have cried with other people who knew. And that meant so very much.

One of the things I realized as I sat in the group was that Jeremy and I never memorialized Harper publicly. For one, my health just didn't leave me in a position where planning some type of memorial was really feasible. But now, now it is. I think that might be something that I need to do to bring her existence in to my world, not just my home. I don't know if that makes sense to you or not. Don't get me wrong, I talk about Harper to people who knew what went on. She's not some secret, and I want people to know that. I heard a woman once say, "Talk to me about my dead baby. Trust me, you aren't going to make me feel any worse than I have already felt by bringing it up." I know people have no idea how to approach that type of conversation. Perhaps by having a memorial service, Jeremy and I could let people know that it's okay to talk about her, ask about her, and we could show them the language we use. Does that make sense?

All in all the support group was just what I needed for right now. I don't know if I'll need to go again or not, but it's so good to know that it's there, and I'm ever so grateful for the other people who were willing to open up and share their hearts with me too.

Tuesday, December 8, 2009

The Scene is Set

December 8, 2009

There's a scene that's been set in my home. It's a warm, happy, peaceful scene. I've taken a lot of care in setting it too; candles here and there, the tree placed just so, the fireplace lit, stockings, ornaments, it's all there. But there's one thing missing. Harper.

I thought specifically about this Christmas when I was pregnant. I thought about how last Christmas my baby would only have been a few months old, so she wouldn't have understood or gotten excited or curious about any of the holiday festivities. But this Christmas, this Christmas she would have been 16 months old. She would have been into everything and curious and she would have been able to open her own gifts.

When the scene wasn't set, I didn't think about it as much. I didn't notice what was missing. But now it is, and there is this gaping hole in the vision the lays before me. And so I cry because that's all I can do. I cry, and I tell myself I'm not going to pretend to be happy if I'm feeling sad. I'm going to be true to what I'm feeling.

Yesterday was a chilly day. I couldn't seem to warm up for the life of me. Even with a cup of hot tea my hands were like icicles. So when I came home I started a fire in the fireplace and sat in front of it, watching the flames. You know that trance you fall under in front of a fireplace? Not the creepy arson kind of trance (smile), but the peaceful, warm one? I fell into the trance. Jeremy came and sat with me and asked what I was thinking about. Again, the tears began to fall. I told him about my tearful drive in to work and about the ache I had for Harper. I told him about the scene and how painful it was that she wasn't in it. He came beside me and wrapped his arms around me. "Oh, that's a tough way to start your day off. Sets the mood for the whole day, doesn't it?"

After a few moments I got myself together. We sat and enjoyed the cozy feeling a little while longer. "You would have been in your element too Abby," he said. "Yeah. I would have," I agreed. And then I let myself dream out loud the detailed dreams of her, because I knew he would appreciate them.

"We would have made cookies together. She would have helped me decorate them. They would have been a mess too. Can you picture it? She would have dumped sprinkles on them and covered every last visible spot of icing, but she would have loved it." And I would have loved it. I would have loved eating her sloppy, happy, over-decorated cookies.

Can you see how she's so real to me? From the moment I read the pregnancy test (which just so happened to be two years ago on December 4th), my fantasies of her began. It's enough to make a person not want to dream any more. But who am I kidding? I've always been a dreamer and I will continue to be one. No matter how painful it proves to be.

Did I mention I'm going to the support group tonight? Wish me luck . . .

Sunday, December 6, 2009

The Good Days

December 6, 2009

I don't even realize how good I can feel physically until I have days like I had yesterday and today. I don't know what the magic formula is, and quite frankly that bothers me a little, but I'll take the good days when I get them, no matter how infrequently they may come.

Okay, actually, it bothers me a lot that I don't know what made the last couple of days so good. And seriously, it makes me want to cry because I think, Am I living in pain and discomfort on a daily basis and I don't have to? Things were so tough for me for so long with needing dilations and such. It was an incredibly painful and trying time, and so I'm actually thankful for what I deal with now and I've accepted it. I don't really talk about it to people, except maybe Jeremy, and even then I keep pretty quiet. I have figured that this is the way my life is going to be. But then I have a couple of days where I feel normal and I wonder, does it have to be this way?

So how is it? It's kind of hard to explain. There is this constant pressure and cramping that I walk around with. Hmm . . . I don't really know how to describe it. I'm sure folks with UC understand what I'm talking about. And after I go to the bathroom I feel it too. From time to time you'll find me in my office fighting back the tears after I've gone to the bathroom. I suppose it's like the feeling you have after you've gone to the bathroom when you were sick with diarrhea and the stomach flu, only it's pretty constant for me. You know what I'm talking about? So what do I do? I take something for the pain. I take a warm bath. I'm sure I'd be justified in taking prescription pain meds, but I just don't even want to go down that path. So I don't.

Honestly? I think it's worse than I've let on or even than I've let myself believe. Geez. I really wonder if I've been in denial. And what's the alternative? Another surgery, because medications just don't seem to get it done. Ugh. No freakin' way. I just don't want to do that. So maybe that's why I'm in denial. It's how I cope.

And as this evening rolls around, the good feeling, the normal feeling, has passed. But hey, it was a good weekend. I got in a couple of nice runs with my husband and sat through an entire movie without even having to use the bathroom at the end!

Wednesday, December 2, 2009

December 2, 2009

"There's been blood when I wipe lately," I finally admitted.

"Really?" he asked. "Then you need to start doing your enemas again."

"Ahhh. I hate doing those enemas!" It's true. I hate it. Every night before bed. It does not make for an easy drifting off to sleep, that's for sure.

"Well I'll help you with them then," he offered - seriously. I laughed.

"It's not that I can't do them myself," I explained, "It's just that I hate how it feels after I've done them." I think if you listened closely you could hear me growling inside.

"Well we need you healthy, don't we Django?" he asked. Django perked up and walked over to us. "Tell your mama how much we need her," he said to the dog as we both petted him. I laughed again.

"You just need me to walk you," I said to Django.

"No. We need you. Tell your mama how much we need her Django," he said. And I believe them. My boys need me. And I need to be responsible here and take care of myself for them. I honestly think I've been in denial lately, because I know that there has been blood for quite a while. Not a lot. That's good. But it's been there nonetheless, which means the disease continues to flare. No remission. I just kept telling myself it was hemorrhoids. But no. It's not. I'm afraid that by admitting that it continues to flare, I'm one step closer to another surgery and the possibility of an ostomy again. But maybe I'm willing to live with it. Maybe I am. Maybe I would rather feel not 100% all the time than live with an ostomy. God, these choices are hard. And yes, it's not certain that I would have an ostomy again, but . . .

Okay. So tonight - the enema. Once again, the enema routine. Really Abby, it's a little inconvenience compared to what could be - right? Yes. Right.