Saturday, January 31, 2009

Beauty revolution?

January 31, 2009

I have all these thoughts hitting up against each other in my head and I don't know how to sort them out. Maybe I'll just spew and see what happens:

I went and got my hair cut this morning. I was in desperate need of a hair cut. I didn't feel attractive or like getting my hair cut was going to make a difference for me. Nonetheless, I work in a professional setting and felt the need to look the part.

My clothes don't fit me right now. Even my "skinny" jeans are hanging on my hips. My weight has been all over the place this year. As I think I've blogged about before, when I was in the hospital I put on 100+ pounds of fluid in a matter of weeks. I think the highest my weight was (that they actually recorded anyway) was at 255. When I was discharged from the hospital the first time I had no clothes or shoes that would fit me. My mom and sister had to go to Walmart and buy me all new clothes - size "XXX." My skin stretched something awful all over my body. As a result, I have stretch marks from the middle of my waist all down the inside of my legs. Believe it or not, if you look closely you can even see stretch marks on my feet (from where water blisters would form anytime I tried to get up on my feet and walk).

No one told me when I was in the hospital how quickly I would lose the weight. They just told me not to worry - it would go away. But I thought it would be a year before I could lose 100 pounds! Come to find out, I peed off eleven pounds in one day, so within the matter of a week or so I was down to 130-something. I had no muscle and was very weak. I could hardly walk I had been so malnourished from the month's worth of bloody diarrhea I had had. I had lost so much blood while I was in the hospital I had to have five blood transfusions and two plasma transfusions (thank you to all you good souls who donate blood). I was just in really bad shape when I got home.


I don't know that I can even explain how traumatic this experience was for me. My skin was stretched so tight that when I would bend my arm (as best I could - which I really couldn't do), water would ooze out of the crease in my arm. I've written about this so many times, but still when I write I can hardly keep from sobbing. It was terrifying for me. I didn't know what was happening to my body.


So I'm in the fitting room at JCPenney today trying on some clothes that might actually fit me right now, and I'm faced with my reflection. And the stretch marks bring the trauma back. As do the baggy work pants that hang on me when I walk down the hallway - they bring the trauma back. You would think that needing to buy some new clothes because you were skinnier than you've been in probably decades would be fun, wouldn't you? But it's not for me. I want my body to be the way it was. I want to fit in my clothes again. I want to go back in time. I would give anything to go back in time.

I'm going to have to make peace with my body somehow. I just don't know how to do it. If I try to deny that beauty matters, I end up feeling like crap and not taking care of myself. If I believe that beauty matters I end up feeling like crap because I can't meet the standards. I know I'm not alone in dealing with this issue. I think it's just heightened for me because of the drastic changes I've been through lately.

While I was taking my nightly hot bath I thought about bucking the system and redefining beauty. Could we do that? Could we stand up together as women and buck the beauty system? Could the men in our lives join us and support us in that? I thought about all the brave people I've been getting to know on jpouch.net and jpouch.org - people who show pictures of their stomas and scars to help others going through the same thing. I thought about how freeing it would be to show the world my scars and stretch marks. I'm tired of feeling like I have to hide and be ashamed. So I'm not to the point that I'm going to post any pictures of my stomach yet or anything, but writing about it is my first step into living shame free. I've written about it before and I'm sure I'll write about it again.

Friday, January 30, 2009

Time for bed

January 30, 2009

I went for my procedure at the hospital this morning. Dr. T said the opening to my j-pouch had gotten smaller again. She also said she now has the equipment in her office to do dilations on Wednesdays if I wanted as well. She said she wouldn't be able to give me the IV drugs, but that if I wanted to take a couple Percocet before she did it she would be willing to try it and see what happens. The more frequently I can be dilated the better my chances are of it working. I'll have to see what I can work out with my job. We'll see . . . It was pretty painful last time. Ugh.

I think I slept for about four hours after we got home. Jeremy turned the ringers off on the phones so I wouldn't be interrupted. It was nice to get some rest. I'm looking forward to having the weekend to get as many naps in as I want.

That being said, this entry is going to be short because I'm tired and want to go to bed!

Thursday, January 29, 2009

Only the lonely

January 29, 2009

I'm feeling lonely today. The kind of lonely that I would feel no matter who I was with. It's probably my depression. There's this whole speech going on in my head:

"You feel lonely because there really isn't anyone out there who understands you. You're always going to feel lonely. All you do is talk about how rough things are these days anyway. Who wants to be around that?"

And then my mom called me. "How are you doing sweetie?" she asked. I started to lie, "Okay," and then changed my mind and said, "No, not so okay. I'm not doing well Mom. I'm just so lonely," and I began sobbing. I told her how I feel like a burden and feel like people don't want to hear how I'm doing any more. They want to hear I'm fine and then pat me on the back so they don't have to listen to my pain any more. Then, in her wonderful mother wisdom she said the following (not exact quotes - paraphrased by me):

"People do want to hear you're fine Abby. They want more than anything for you to be fine. They have so much compassion for you. People are just so afraid of saying the wrong thing and offending you or they don't know how to put to words what they are feeling for you. But they are feeling compassion for you."

I knew she was right. I knew it. I know that people care about me. I know they don't know what to say either. The people who have said just that to me have touched me deeply. One of my co-workers sent me an e-mail at the beginning of the year. She said, "I'm not very good with words Abby, but I hope you and Jeremy have a good year this year." I knew what she was saying. That she reached out to me to tell me that almost brought me to tears.

My mom and I sat in silence quite a bit during our conversation. Sometimes that's what it takes. Just to sit with another person in their pain. Just to be there (the way Django is for me when I'm in the bathroom too). Hmmm . . . maybe this is a whole new kind of therapy I'm developing - silence therapy (maybe it already exists?!). Just sitting with another person while they feel their pain. No words are required. Just be a witness.

Once again, talking to my family pulled me through my funky mood.

Wednesday, January 28, 2009

A letter to me

January 28, 2009

Probably sitting down to blog after I just had a rough time in the bathroom is not the best of ideas. Oh well. My stomach is rolling right now - I shouldn't have drank OJ with my dinner - too acidic. I have a feeling I'm going to be paying for that all night long. My obliques are sore from pushing so much when I have bowel movements. I honestly don't know what's happening to me physically when I go to the bathroom, but it's so exhausting - my whole body shakes to the point that my teeth almost rattle. Too many gritty details? Sorry. This is my life.

I have had a pretty good day today. Yes, a couple of knock out rounds in the bathroom that wiped me out, but I got back up on my feet to face the world in a relatively quick amount of time afterward.

I have these recurring dreams sometimes where I'm swimming in these large swimming pools. I'm swimming deep in the water. My body is light and my motions are fluid. I don't even have to think about air. There are always other people around me, but they don't get in my way. They seem to be enjoying themselves and let me be in my own space.

For me, right now, to know that I could go to sleep tonight and have that dream; it would be a gift. If for just a moment in a dream my body could float and move and just be, just thinking about it brings tears to my eyes.

I've been seeing my body as the enemy these days. When I used to work as a therapist and had clients who were dealing with eating disorders, one of the assignments I would give them between sessions would be to write a letter to their bodies. I was thinking about that on my drive home today. I was trying to view myself from outside of me. There are things I wanted to say, and things I wanted to hear:

Dear Abby,

You, dear girl, don't have to be so strong. Let go. Let go of every expectation you have of yourself as you go through this labor and birth into this new you. Let those expectations turn to a gentle mist and blow past you. If the droplets touch you, let them cool you.

I want to take the empty space in your heart and warm it with orange and yellow. Oh that I could wrap my arms around you and calm you and soothe your thoughts till they slow to a dripping molasses. I want to paint every scar on your body in beautiful colors so you won't be reminded of the pain; so you'll only see the beauty that is coming. And it is coming tired one. A new beauty you've never known. Let go of the ravaged clay that you knew as beauty. Loosen your fearful, painful, grip and let go. It will all be okay. You'll see. It will all be okay.

Love and peace and joy,
Me

Tuesday, January 27, 2009

Semi-obnoxious angel


January 27, 2009

I worked hard on conquering one of my favorite cognitive distortions today; all or nothing thinking. This morning as I was getting ready for work I was in pain, felt sick and I was soooo tired. "How am I going to do this today?" I mumbled to myself as I showered and got dressed. "No Abby, just because you don't feel well right now doesn't mean the entire day is going to be this way," the angel on my shoulder reminded me. And sure enough the entire day wasn't that way. I felt pretty good the majority of the day. In fact then I caught myself thinking, "Maybe it's passed? Maybe I'm all better!" And then the angel spoke again, "No-no Abby. Just because you feel better right now doesn't mean you're all healed! If you start thinking that way you are going to be devastated when you don't feel well again." Oh! She's right. I know she is; my little semi-obnoxious angel.

So I tried to maintain some balance today as I processed how I was feeling, both emotionally and physically. I also sang along to Manic Monday on the radio (I know it's Tuesday) on the way home from work instead of I Grieve, which maybe helped my mood a little too!

Monday, January 26, 2009

When will I learn?

January 26, 2009

Let me just start this out by saying today was a pretty good day. I got a good night's sleep last night (only woke up at 2 and 3 a.m.), which always helps. I felt good as I got ready for work and the morning went by practically pain free. These are all good things - very good things. The fact that I'm sitting down to blog after a rough afternoon and early evening means that my "voice" is going to be a little more negative. It's always hard for me to be in a positive mood when I'm having a tough time physically. That being said . . .

My drive home from work was another tearful one. I think it's that I have all this time alone to think and, yes, listen to sad music. I listened to Peter Gabriel's song I Grieve (http://www.youtube.com/watch?v=iQzU-PJ_eAY) all the way home. And this is what I realized: I have not been allowing myself to be angry about my losses. I touch on the anger briefly, but then the good girl inside my head tells me that I should know that this is all a part of life. No one gets what they really deserve. I tell myself that I'm going to learn life lessons from the pain and that understanding should make this all better. But I think I'm really talking myself out of the anger part of grief. And so, I decided that tonight I need to write the anger out of me, without qualifications or explanations. I need to just let it rip.

I'm angry that I don't have a colon. I'm angry that every time I go to the bathroom I'm reminded of all my pain and loss - every single time. I'm angry that I don't have my daughter. I didn't get to experience the joy of pregnancy. I never got to have a baby shower.

There are all these other subtler things I'm angry about too though. I'm angry that I feel so alone in all of this. No one else can truly understand what I went through. It was me, alone in my own mind, night after night in that hospital. It is me alone now who sits on the toilet in pain. It's me who looks down at my ravaged body and knows this is how I will live for the rest of my life. It was my body that went berserk. I was afraid on a daily basis that something was going to happen to me and I was going to die. And through all that fear I had to be thankful to people, because I was a good girl. I had to thank people for giving me shots and for cleaning up my toilet after I went to the bathroom and yes, even for helping me wipe my bottom. I had to say thank you when I was humiliated. I still do. Every Friday I have to say thank you to the nurse for sticking an IV into me. Thank you to the doctor for sticking a scope up my rectum. I'm just so tired.

And I'm angry that I used to work so hard at being not just a good employee, but a stellar employee. I never called in sick unless I was really, truly sick. I worked hard and smart. And then this illness came and I can't be that consistent person any more. And I'm angry about that - that was my reputation and I feel like I've lost a part of my reputation.

I can't even go there right now about all the anger I feel about losing Harper. Honestly, I don't think I've reached a point yet where I feel like I deserve to be angry about it.

And underneath it all there is this feeling that I have to say thank you to people for loving me. And there is a part of me that is angry about that. Angry that I'll never be able to repay all the kindnesses I've received.

Okay, so this is where the internal dialogue goes on in my head. This is the part that I can't let go unanswered. This is the hard part for me. This is the lesson I'm supposed to learn - I know it. As I'm working on my blog right now I'm sobbing. And I stopped to talk to Jeremy and tell him that I feel like I'll never be able to repay all he's done for me. "That's not what this is about Abby," he tried to tell me. Why can't I let that sink in? Why can't I just let others do for me without feeling like I will owe them? That's what grace is about isn't it? Receiving something we don't deserve? But allowing grace to change you isn't about feeling like you owe something and should do something in return (and then becoming bitter about what you owe). Allowing grace to change you is about being inspired by the goodness and grace you've received and going and doing the same for other people. All of a sudden I'm thinking about Les Miserables and how the main character (I don't remember his name - Jaq something?) was forgiven for stealing from the people who had sheltered him in the night and it inspired him to change his life around and do good. That is grace.

When will I learn? (And please God, how about no more lessons until I have this one figured out?)

Sunday, January 25, 2009

Sunday at the park

January 25, 2009

I woke up and got out of bed at a fairly reasonable time this morning. I didn't want to laze the morning away. I wanted to prove to myself that I could get going and that I would be ready to do it again for work Monday morning. After Jeremy woke up we decided to go for a walk at the park.

As we got out of the truck at the park a little girl caught my eye. She couldn't have been but two years old. She was a petite little girl with shoulder length blondish curls bouncing with every step she took. She was playing ball with her mom and her brother. There are certain kids that I see from time to time who look like how I imagine Harper would have looked. This little girl was one of them. My heart panged with a sense of loss. I didn't break down. I didn't cry. I just felt this sadness. I thought about how I would rather be spending my Sunday with my child at the park than anything else I could possibly be doing, and how lucky the woman was who had her two children there.

We had an enjoyable day nonetheless. I wanted to keep doing things, I didn't want to spend my day on the couch, so we decided to go to a movie. We went and saw Last Chance Harvey. It was a sweet movie. I managed to get a nap in after we got home. I felt well physically most of the day, until just about an hour or so ago. Pain started kicking in then and I started to feel a little panicked, "When will it go away?" But instead of focusing on the fear, I'm trying to focus on how good I felt the rest of the day.

Let's hope for a good night's sleep to start my work week off with.

Saturday, January 24, 2009

Just a few things . . .

January 24, 2009

I woke up for the second or third time last night at about 4:12 a.m. I had had a dream about a baby. One of my friends had given me a little baby boy. He was a little cranky and I held him close to me and swayed back and forth and soothed him till he quieted down. Then I woke up.

I laid in bed thinking about Harper again. I thought about how I didn't get to be big and pregnant and feel her kick or hiccup, but I did get to feel her flutter inside of me. I thought about how that is a connection to her that only I had with her. The rest of the world, including her daddy, missed out on that. I thought about the couple of days before we found out we lost her, how the doctors had asked me if I was feeling her move and I said, "Hmm, no I haven't really felt her move today." I didn't know. I was carrying all that extra fluid, I thought it had just reached the point where I couldn't feel her because of the fluid. I didn't know.

To answer the question that many have asked me - I don't think we will try to get pregnant again. Yes, it could just be the place we're at right now, but I don't think so. First of all, studies have shown that 25% of women who have their colons removed because of ulcerative colitis end up being infertile. I just don't think I want to go through the ups and downs of trying to get pregnant with those odds. Also, I still have my rectum and 5 cm of my mucosa lining - both of which could still flare up with UC at any time - pregnancy being one time it could happen. That would make me sick and I'd have to be on meds and all that - blah, blah, blah. Stuff I really don't want to have happen again. But the main reason is that I don't want to put my body through pregnancy. I don't want the sickness or the strain. Most of all, I don't want to risk having to have a Cesarean section. I never want to be opened up again - ever. If there is anything to do to avoid it, I will.

For now I just want to heal and enjoy my husband's company. Thinking about the future beyond that is too much to imagine.

On a different topic, you know how they say animals take on the traits of their owners? Jeremy and I laugh sometimes about how nervous Django is and how fearful he is. We wonder where he gets it from? Below is a little video I took today of Django in the hallway. Jeremy was doing some cleaning and reorganizing and had some boxes in the hallway, but Django is too afraid of them to walk past them without a little help (which his momma of course gave to him). Enjoy!


On yet another topic: So my doctor wants me to be on a high calorie diet to put on some weight. You would think this would be easy and fun even - but when you don't have an appetite and feel nauseous so much throughout the day, it can be hard. She did give me medication to help with the nausea on Friday. So far it's helped some today. I'm glad. And because my husband is all behind me getting a little more meat on my bones he did some grocery shopping yesterday and stocked up on snacks and goodies that I enjoy. One item in particular that he purchased was a bag of chocolate chips. We already had some bananas that were turning brown. It was the perfect time to make banana chocolate chip muffins - from scratch!

In 1995 I worked part time for a few months for a woman in St. Boni, MN (I'm ashamed to say I don't even remember her name now!) helping her with her daycare. One day she made these banana chocolate chip muffins for the kids. They were to die for! I got the recipe from her and have made them as gifts for people around the holidays ever since. And now, because I want to share the wealth, I'm sharing the recipe!

3 ripe bananas - 3/4 c. white sugar - 1 egg - 1 tsp. baking soda - 1 tsp. baking powder - 1 1/2 c. flour - 1/2 c. melted butter - bag of chips (milk chocolate are the best!)

Bake for 20 minutes at 375. Yum!!

Friday, January 23, 2009

Reach out, reach out and touch someone

January 23, 2009

Jeremy got home from work last night just as I was finally falling asleep (10ish). He came to bed an hour or so later, and as he crawled in next to me he started smoothing my hair. He kissed my forehead a few times and then whispered to me, "Do you want a back rub to help you sleep?" I half cried, "Oh yeah sweetie, that would be so nice." I turned onto my side and drifted off to sleep as he soothed my aching muscles.

It's amazing to me these days - the power of touch. I have this heightened awareness of all things tactile. I kid you not when I say that I have almost been brought to tears by my co-workers a couple of times when they took my hand in theirs and asked how I'm doing. When you are struggling with so much pain, you just don't realize what the smallest bits of affection mean. Do you remember the old AT&T commercials? "Reach out, reach out and touch someone." My new mantra!

I think this must be why I'm soaking in warm baths almost every day now and of course it's why I LOVE cuddling with Django and petting him - so few things feel good to me physically. I totally immerse myself in the positive sensations that I find. But you know, I think it's more than that too. I think there is a part of my heart that has opened up to love more than it ever did before. I want to snuggle up to as many people as I can - with my whole heart and soul. I'm not feeling the need to put up a protective, tough front. Bring on the love! Because I am acutely aware now of how much I need that love.

Thursday, January 22, 2009

The darkness (before the dawn?)

January 22, 2009

I started writing about my day and then went back and erased it. I feel like such a negative person writing about the tough spots. I'm tired of me. Today has been a day full of me questioning my own intuition. Man, that's just a tough spot to be in. Do I know what my body needs right now? Do I know what my mind needs right now? Do I believe what my body is telling me? Am I even together enough these days to know anything?

I've blogged some about how I'm dealing with the grief of losing Harper. And I've blogged quite a bit about the physical challenges I'm facing. One thing I don't think I've been as up front about (though I'm sure it will be no surprise for any regular readers that may be out there) is my struggle with depression. Yep, diagnosable, DSM-IV, major depression.

This isn't the first time I've had an episode of depression in my life, and I highly doubt it will be the last. Today was one of those days where my depression stood front and center, spot light and all. I've a hard time sorting through my thoughts. Every story I encounter I turn a negative spin on.
Example: This morning as I was walking from the parking garage to my office building I started thinking about how sick I felt. Waves of nausea were coming over me. And then a purple and grey pigeon crossed my path. Now, during times when I'm not depressed, I might look over my shoulder to see if anyone is within earshot of me and, if not, I might actually greet the pigeon - out loud. "Hey there little fella." Something like that. But not today. When I'm depressed this is what happens in my head: "Is that bird limping? What if a bird had a disease like mine and was in pain? Oh my gosh, what do dogs and cats and horses and birds do when they're in pain and they don't have a human to take care of them? I know what they do. Animals kill the weakling. Chickens will peck the sick chicken until it dies. It's survival of the fittest. Our world is set up to get rid of the sick and lame - to put them out of their misery. Oh God, would that I could be put out of my misery."

I made it to my office. I had a few ups and downs physically and then the work day drew to a close. But not before I made a trip to the bathroom and felt like I was going to vomit and fall down on the ground. It was all I could do to walk to my car without groaning in pain. As soon as I pulled closed my car door I began to cry. When will it end? I cried as I drove around in circles exiting the parking ramp. I cried as I merged into traffic. I sobbed at the stoplight and worried about the person in the car next to me looking at me. "I'm a mess. I'm such a fake - I don't have anything together. When will it end? And I don't have Harper!" Tears, tears and more tears. Snot and staccato breath. (Okay, now I'm going to be honest with you about my thoughts right now, but please don't freak out okay? I am very familiar with this depression thing and I know that these are just thoughts and are nothing I would ever act on - but this is where I'm at right now - okay?): "Don't people know that I just want to give up? I can't do this any more. I don't want to live. Would people be mad at me if I killed myself? I'm such a freaking mess. Wouldn't they understand? No, no, I could never do that. I need some serious psychiatric help. My medication isn't working any more. I should be able to handle all this, but because I'm such a weak minded fool I can't! I'm so weak minded."

Yeah, I know. It's pretty negative. The first thing I did when I got home though was to call family. I don't sit and wallow in these thoughts when I'm alone. I know when I need help and I reach out for it - okay? So please don't worry about me if you're reading this blog. (Man, writing this one is quite an experiment for me - how much do I put out there? Will this help someone else?)

Talking with my family always helps me. I know that people love me. I know that I never want to leave this earth - I really just want to find a way to live - pain free. I really want to be happy. But that's how depression plays out for people. If you've experienced major depression, you know.

I got a letter from my grandma the other day. It was the sweetest letter. So to the point. My dad told her I was having a hard time. She doesn't want me to give up. She loves me and is praying for me (and my doctors). I'm going to keep that letter close to me. It means so much.

After an hour or so I finally got around to opening my mail. There was a card in there for me from a Minnesota address. I couldn't tell by the handwriting who it was from. When I opened it there was a picture of my friends from high school - Sara, Jessica, Amy, Kim, Molly, and Emily. My friends. Women I knew as girls (since 6th grade). It was the strangest feeling, but I swear I could feel the love from them. How could women who I shared such inconsequential angst with when we were just girls care so much about the heartache I feel as an adult woman? But they do. I know they do. I feel so connected to them. And I'm so thankful for the love they gave me today in that card.

So that's been my day today. I'm in bed now with my laptop, ready to power down. Ready to get a good night's sleep and head in for my scoping/dilation in the morning! Sleep tight.

Wednesday, January 21, 2009

Gratitude continues!

January 21, 2009

We sat in Dr. T's office in silence. The air was cool. The room was clean. I thought about how I could close my eyes and imagine I was in a hotel room. "I always worry that they're going to tell me I'm wasting their time or that the problem I'm there for isn't that important," I said quietly to Jeremy. He nodded his head in agreement.

Dr. T entered the room. She smiled and I felt at ease. We talked about what was happening. "Yeah, things are a little better since the dilation on Friday, but I'm still having a hard time," I told her. She asked if I thought I could handle her trying to dilate me today without drugs in the office to see if it worked. Apparently the more I'm able to be dilated, the better chances of my body responding and it staying permanent. In fact, Dr. T said she did some research and there is a 50-60% chance that after a while my body will stay dilated with repeated dilations and then I won't need surgery. If I can tolerate it being done without drugs, then there would be the possibility that we could do the dilation at home. "We" is the operative word here. I won't be able to do it myself. My husband, the angel that he is, asked Dr. T if he could learn how to do it and help me at home. She said that she could teach him if I was comfortable with him helping. I laughed a little nervously. "Yeah, I would be comfortable with him doing it. There isn't much he hasn't been a part of at this point. He helped the nurse put my catheter in when I was in the hospital." She smiled at him. I patted his leg. "Oh sweet baby," I said.

So I told her I was willing to try to have her dilate me in her office without drugs and see what happens. We tried, and it didn't work well. I couldn't handle the pain without meds enough for her to do the full dilation.

Dr. T said our plan is going to be for me to have a standing weekly appointment at the hospital GI lab for her to dilate me. There they will be able to give me the IV medication so they can do the full dilation. She said I did really well last week. She said we'll do this for about six months, unless I find my body is responding and I don't need it any longer. After six months if my body is still not responding then we'll talk about surgery. But with a 50-60% chance that it will work, she didn't want to go right to surgery. Besides, she wanted to wait longer for my body to heal from the last surgery before doing another one any way.

So that's the plan. I left the clinic feeling so much lighter. I was so scared that I was going to go in today and she was going to schedule surgery for me. I still have hope! I will go in for a weekly scoping/dilation for as long as I need to if it means I might not have to live with an ostomy again!! Oh thank you God.

Tuesday, January 20, 2009

An attitude of gratitude

January 20, 2009

Today has had its ups and downs, but right now I feel the need to focus on my gratitude.
What I'm thankful for:

  • I'm thankful for my family members who call me to see how I'm doing and don't seem to tire of me.
  • I'm thankful for my husband who made me dinner tonight.
  • I'm thankful for my co-workers who hug me and squeeze my hands and ask what they can do to help me and never flinch when I respond.
  • I'm thankful for employers who are so authentic and kind.
  • I'm thankful for friends who send me e-mails and open up and share about their lives too (that's you r!)
  • I'm thankful for the few hours I had today when I felt okay.
  • I'm thankful for pain meds.
  • I'm thankful for health insurance (my bills from the last year total close to $400,000!)
  • I'm thankful for smart people who chose to go to medical school and became surgeons and GI's instead of investment bankers.
  • I'm thankful that I live in America!
  • I'm thankful for my dog who gave me HUGE kisses when I came home from work today.

Peace to you all . . .

Monday, January 19, 2009

Trusting the love

January 19, 2009

Last night Jeremy had rehearsal with some other musicians here at our house in the evening. I was going to barricade myself in the bedroom and fall asleep watching TV without making any face time. And then something that I'm embarrassed to admit happened. I heard a woman's voice. Not only that, I heard her playing my piano and singing. I stood in our master bathroom and listened to her through the wall. I never realized the piano was on the other side of the bathroom wall.

I stood in front of the tub and leaned over it and put my hands on the wall. I felt the wall vibrating from the piano. I turned and looked at myself in the mirror. My hair was greasy. I hadn't showered in, hmmmm, I don't know how many days. My face was pale. My eyes were dead. And I heard her voice.

I undressed and got in the shower, careful to wait till the song was done to start the water. I didn't want to interrupt. But I wanted to get fresh and clean. And I wanted to sob. I thought about how much life I heard coming from that powerful voice out in my house and how little life I saw in my own eyes. The thought that I really didn't want to have but couldn't stop from coming was, "How can my husband still love me when I've lost my vibrancy?"

This stupid struggle continues. When will I let go of the fear of losing his love and just trust it? I was talking to him about this today. His response was just perfect, "It's your house Abby. If you want to walk around without showering in your own home, that's okay. And it won't change my love for you." I hadn't said anything about worrying about his love. But he must have known. I looked over at him after he said that I thought about how certain I am that Jeremy has never wanted anything other than to be with me. I'm certain of it. What a gift.

This afternoon I felt like Jeremy and I connected in a way we haven't connected for a while. There was an ease between us. We laughed with each other and joked around. Oh, I was so glad. You become a different couple when there is so much stress around. It was nice to have a glimpse back to the way we used to interact.

Sunday, January 18, 2009

Finding meaning

January 18, 2009

I woke up yesterday with a sore throat and had a 101 fever by the end of the day. I knew it! I knew the moment I shook hands with one of my clients this past week who could hardly talk because she was so sick (and had kids at home with fevers) that I was going to come down with something. I just don't have the immune system that I once did. I get so angry at these people who walk around sick and then have the nerve to shake hands with you or hug you OR kiss you on the cheek for crying out loud!! Boy, I sound pretty stand-off-ish don't I? Maybe I'd be better off if I became bubble-Abby? No, that wouldn't be good either. After all, didn't I just blog a couple of days ago about how much hugs that day meant to me? So if you're reading this, please don't stop with the affection (those of you who know you are sick notwithstanding).

I'm disappointed to say that I'm still having problems going to the bathroom. I have a feeling the dilation didn't work - or only worked for the afternoon. I'm going to call Dr. T in the morning and see what she wants me to do.

Today I posted an entry on http://www.jpouch.net/, a website for people who have the disease I have (Ulcerative Colitis) and have had the surgery I had (j-pouch surgery). Check it out if you have time. There's a great photo of Django at the end. It gives a brief (okay, maybe not super brief, but it's not as long as my memoir) history of what I've been through in the last twelve months.

Before I did the post on jpouch.net I had been feeling kind of down. I got really discouraged after one of my trips to the bathroom and ended up in tears. Then I started feeling like the people in my life must be so tired of hearing about all the obstacles I'm facing, even though I really need to talk to them about it. Blah, blah, blah - I was feeling sorry for myself.

When I was writing my post on jpouch.net I reminded myself that I am responsible for what I make of all of these experiences. My mantra, "Don't be a victim, be an inspiration," came to mind again. Meaning can come of this if that's what I want to have happen. It's up to me. I will not let this ruin me. I will not.

This blog, the memoir I have been working on, my entry on jpouch.net - they are all ways I am trying desperately to reach out and help someone else through their grief or health problems or whatever else I can help with. That is giving me purpose. I need purpose right now. I felt so much better emotionally after my entry today. So I guess trying to help others is helping me too! (So much for altruism!)

Saturday, January 17, 2009

3:42 a.m.

January 17, 2009

I woke up at 3:42 a.m. to, yes, you guessed it, go to the bathroom. When I came back to bed my mind was racing. I started thinking about Harper, as I am wont to do in the wee hours. "Stop, stop, stop, stop," I said to myself. I knew I would never get back to sleep if I let my mind wander there. A short poem came to my mind; Tiny fingers, tiny toes, but the little voice, I'll never know.

I know what she looked like, but I will never get to hear her little girl voice. Little girls' voices are so wonderful too aren't they? I think about my niece Delia's voice and how I practically melt whenever she talks to me. She could get by with anything with that voice (and she might know it). But my favorite is when she says, "I love you Abby." Ohhhhh . . . .

3:43 a.m. my mind went to being in the hospital after I gave birth to Harper. I thought about how the very next day, not even 24 hours after having given still-birth the chipper little nurse who was assigned to me wanted me to get up and move around. In my mind I knew she was a sweetheart, but I really just wanted to knock her over with my fluid filled arms that I could hardly move. At that point I had over a hundred pounds of extra fluid on me because of the medications I was on. Get up and move - yeah right. What about the fact that I just gave birth to a dead baby? Maybe what would be best for me would be for someone to put their arms around me and just hold me for a few days. How about that? As I lay in bed last night thinking about that I just wanted to punch the mattress as hard as I could. There was no time to grieve. Now I wish I could go back in time and just yell at the top of my lungs.

I was finally able to get back to sleep. Today has been a little tough for me. When I've gone to the bathroom I've had some problems and I worry that the dilation didn't work. I'm pretty freaked out today. We'll see how today and tomorrow go and if need be, I'll call Dr. T on Monday. I'm so scared. I keep trying to tell myself that I'll be able to deal with whatever happens. Jeremy tried to reassure me of that too. It's just so frustrating.

Friday, January 16, 2009

The results are in

January 16, 2009

I guess I'm feeling a little numb right now. I slept fairly well last night. I think Jeremy was more anxious this morning than I was. He kept starting to talk through how we would deal with the worst case scenario happening and I'd start laughing. "Are you trying to make me feel better?" He'd grin kind of sheepishly and then explain that he needed to talk through some of this. "Can you do it up there?" I asked as I pointed to his head.

All morning I focused on just getting through the procedure. "Didn't she have to have you completely under last time when she dilated you?" Jeremy asked. I told him she did. "Oh, that's going to be painful then," he said.

"Again, are you trying to comfort me?" I laughed. He laughed too this time.

"I'm sorry, that sort of just came out," he said. Once we got going though, he was a pillar of strength. As I laid in the prep gurney with my freshly donned IV he squatted on the floor next to me and kept me occupied with funny little anecdotes. There were plenty of kisses and the smoothing of my hair too. I so wished he could go into the exam room with me - it would have calmed me down so much.

In the exam room they gave me the good drugs. "In a matter of seconds it's going to feel like you've drank a half a bottle of wine," Dr. T said. "Bring it on then!" I responded. She was right. I was awake enough to see what was going on and to feel a large amount of discomfort. There was no pouchitis there. There was, however, not a very large opening to my j-pouch. She said she was going to dilate it right then, which she did, which did not feel good. When she was done I vaguely remember someone telling me I could close my eyes (or did I make that part up?).

The next thing I remember I was back in the curtained off area with Jeremy and Dr. T. Dr. T was explaining that the hole was the size of a straw opening and that's why I was having such difficulty going to the bathroom. She dilated it to the size of a quarter. Apparently she said she doesn't expect me to go for more than two weeks before the hole will start closing up again. (That part of the conversation I don't remember, but Jeremy said I was still a little drugged up then.) When it starts to close again I should call her and we'll go through this procedure again to dilate the hole. Ultimately, however, she believes the j-pouch will need to be revised. She said she likes to wait a year before revising a j-pouch, but that she doesn't know if I'll be able to handle all of this that long. It's already been three months since my j-pouch was constructed.

Dr. T explained that revising my j-pouch would be the most difficult surgery I have had to date. She said that it's a very complicated surgery. She would like to keep the j-pouch that has already been created, but that isn't always possible. She said if it isn't possible and a new j-pouch needs to be created it can take up more of the small intestine and ultimately there might not be enough small intestine left to stretch down to my rectum. Thus leaving me with a permanent ileostomy.

If she revised my j-pouch and everything went smoothly, I would be left with a temporary diverted ileostomy until the j-pouch healed. After about three months of healing then the temporary ileostomy could be taken down (what I just had done a few weeks ago).

I know it's hard to picture. For those of you who are interested in learning more about it, here is a great link to a little tutorial with diagrams and everything. http://www.j-pouch.org/illustratedpouch/basicanatomy.html Check it out if you have a few minutes.

As I said earlier, I'm a little numb emotionally right now. All of this hasn't completely sunk in yet. When we got home I took another percocet and took a long nap. I just woke up. My bum's a little sore (of course!) so I think a warm bath is on tap for the night. I tend to do a lot of my deep thinking when I take a tub - so perhaps that'll be the time for me to mull all this over.

I did have these moments of resignation today when I thought, "I'll just deal with whatever happens." What else can we do? Jeremy, God bless the man, said that he's ready for whatever comes our way. I think his biggest worry about all of this is that my spirit is going to break in this process. I guess I worry about that too. How much can one person take? Gosh, I even feel silly writing that because there are so many people out there who have dealt with and are dealing with so much more than I.

The things that made me smile today:

My niece Delia said, "Good luck wif your test today. I lub you." She also sang for me "If you like it then you should've put a ring on it," and totally cracked me up!

As I was getting ready for my exam this morning Jeremy affectionately squeezed my bum. Then he said, "Oh, I probably shouldn't goose you this morning. Your poor butt is going to have enough attention today." Made me laugh.

My brother told me Jonas' bum is sore today too from diaper rash - so I know the little guy can relate to his Aunt Abby.

Of course, the drugs made me smile, and laugh, and act just a little goofy. =)

Thursday, January 15, 2009

Catching some zzzzzzzz's

January 15, 2009

I stayed home and took care of myself today. I stayed on top of my pain meds all day, which really helped. And I SLEPT!! And when I say I slept, I'm talking two naps for a total of FIVE hours of sleep today. At one point Jeremy was napping with me and I heard him ask me what I was saying, so I said it again. "What Abby?" He asked again. Then I figured it out. "Oh never mind. I'm talking in my sleep," I said a little frustrated that I wasn't communicating clearly whatever was going on in my dream and then I fell back into my mouth open, head back, dead to the world sleep.

I've tried to do some positive self-talk today to prepare for my wonderful scoping tomorrow. "No need to get tense Abby. Stay relaxed. That will help you the most," deep breath. I'm trying not to think about the results. I'll deal with whatever happens. Yep. I will.

I've been so touched by all the people who have responded to my last blog. I'm amazed at how people are willing to enter into this process emotionally with me. I honestly think that's what love is - being able to enter into anything emotionally with someone else. At least that's when I feel the most loved. It takes a lot of courage to jump in to someone else's grief and pain. There's no control there - you just have to let go and feel and connect and comfort and love.

This whole process has taught me something else too. I don't have to be strong and have it all together. In fact, the times that I have received the most love have been the times that I have been authentic and honest about how I'm feeling and what's going on with me. I know that's obvious, but sometimes the obvious lessons are the hardest to learn.

So I'm going to hope for a restful night's sleep tonight. I'll blog about the results of my scope when the drugs have worn off tomorrow. In the meantime, my heart will be full of gratitude for all the love, prayers and positive thoughts you all are sending my way.

Wednesday, January 14, 2009

What a marvel

January 14, 2009

"I'm ready for this Abby," Jeremy said to me on the phone tonight. How can he be ready? How can being with me be worth it for him?

Last night was a rough night for me. My body is exhausted. I had a bowel movement that just took all I had out of me (okay, I had more than one that was too much for me, but this one in particular caused a breakdown). I crawled into bed and sobbed. "I just can't do this any more Jeremy. I feel nauseous for like an hour after I go to the bathroom. I'm so tired. I just don't even want to go on any more," I wept as he put his arms around me.

We talked about a number of things after that. Jeremy said he's worried about leaving me alone now because he thinks I don't want to live any more. I reassured him I would never do anything to hurt myself, but that I needed to be honest about how I'm feeling about life these days. He told me he thought I needed to get in to see Dr. T again. I agreed. He told me I need to keep taking my pain meds. I agreed about that too. Then he just loved on me. He told me how much I mean to him and that we'll get through this.

This morning I got up and was still exhausted from my trips to the bathroom during the night, but I showered and dressed and drove in to work for the day. My stomach was cramping as I sat at my desk. I knew this wasn't going to be a good day. Alexis stopped by to see how I was doing just as I was about to have a mini-breakdown, which I proceeded to do. She came quickly to my side and put her arms around me. I just let go and cried. She talked to me about needing to take care of myself physically. I knew she was right. I needed to go home, so I did. But first I put a call in to Dr. T's office.

When I got home Dr. T's office called me back and told me she could see me this afternoon at 2 p.m. Jeremy was at work, so I was going to go to the appointment alone. That's fine - I'm a big girl. Going to the bathroom on the other hand, that's something that I'm having a hard time doing alone. I know it sounds silly, but I'm in so much pain when I go, it's almost scary to be alone. I sat on the toilet and called Django into the bathroom with me. He walked in and looked at me and turned to leave but I told him to stay. Then I started groaning in pain and crying. He laid down at my feet. I had my head in my hands and he started licking my face. He stayed with me till I was done - God bless him. It's okay, you can think I'm strange.

So I went to see Dr. T. She was so kind and listened to everything I had to say. She told me that I could have pouchitis and she wanted to start me on Flagyl to treat it. She said after 10 days if I was still having problems she would schedule a pouchoscopy to scope my pouch and see what's going on. I started to cry. I told her that I couldn't wait 10 days to find out what's really going on. I said that, although I don't enjoy being scoped, I would prefer to just get the scoping over with and know now what's going on now. She said she could "absolutely" do that. I'm scheduled to have my pouchoscopy done on Friday morning at 10 a.m. She said they would have to give me some drugs to make sure I was relaxed. FINE WITH ME!

So what it comes down to is that 1) either the hole to my pouch isn't dilating as it should and that's why I'm having so many problems; or 2) I have pouchitis and that's why I'm having problems. Dr. T said that if it's #1, she would dilate the hole to my pouch on Friday while I'm there. She said, though, that if the hole doesn't stay dilated and I have to keep coming back for this procedure, she would need to do surgery to revise the pouch. That would mean I would have to have an ileostomy for a few months again, but it would be temporary. She also said that if #2 is the case, she would treat me with the Flagyl, but that she would not be happy that I had pouchitis so soon after my surgery. She said, "I don't want to scare you here, but I do want you to know that there are some people, not everyone, but some people who get pouchitis so frequently that they have to have surgery and have a permanent ileostomy." I told her that did in fact scare me. I started crying again. She told me it was going to be okay.

I sat in the exam room by myself as I waited for nurse LE to schedule the pouchoscopy. Tears streamed down my face. LE came into the room and immediately put her arms around me. Nurse M then came in the room and asked why I was crying. I told her I was scared and tired. She said, "Oh, don't cry." Then she paused for a moment and looked at me. "No sweetheart, you go ahead and cry. I hate it when people tell me not to cry. You cry until you can't cry any more," she said as she wrapped her arms around me and held me for a moment.

I cried on my way home. When I got home I went to the bathroom and called my "anonymous" brother. I asked if he would stay on the phone with me while I went to the bathroom because I just needed a little support and Django was outside. He laughed in a concerned way and then I began sobbing and told him how I just couldn't take this any more. He told me how hard it is to hear me like this. He said he worries that I'm going to do something to kill myself. I told him, as I told Jeremy, that I would never do anything like that. "I want to live and to be happy," I said. But I told him that I just want to be honest about how I'm feeling and that life is pretty discouraging right now. A bout of anger rose up in me and I yelled how unfair all this is. I'm tired of it all. I told him that I hate my body. He listened. He told me he loves me.

We talked again a little later and Jason (my brother) said, "You know Abby, with all you've been through, I'm still just happy that you're alive." He told me how there would be a hole in the hearts of my niece and nephew if I wasn't around. He told me again that he loves me.

My mom called to check in on my day and I recounted all the kindness people had shown me today. I don't think people realize when they do things like put their arms around you or call to see if you need anything, not to mention just saying how much they love you - what a great difference that can make to a person - what a great difference that makes to me. This day would have been hell without the love I received.

And then Jeremy called. I didn't have a way to reach him today, so I was eager to tell him what Dr. T had said. And Jeremy told me he was ready for whatever comes our way. And once again I'm left to marvel at the love . . .

Tuesday, January 13, 2009

Discouragement

January 13, 2009

I'm discouraged. Yesterday and today I've felt really down. I had been hopeful that Dr. G would be able to give me some answers as to why I feel so bad, but he didn't have answers for me. He said I could be having UC symptoms on the part of my rectum that's left OR it could be that my body is just still healing from surgery. He said it would take a couple of months to know for sure either way. So I have to put up with feeling this way for longer. Every time I go to the bathroom I just want to give up - it's so exhausting physically. Ahhhh!! And I still feel like something's not right - something is wrong. Jeremy wants me to make an appointment with my surgeon again and I think he's right. Maybe the doctors will start thinking I'm some paranoid pain, but if my gut (pardon the pun) is telling me something's wrong, I have to listen.

I'm so tired of fighting these battles. I'm so tired of trying to figure out what's going on with my body. Oh, I'm tired. I'm just not feeling a lot of enjoyment in life right now. It's been a long time . . .

Sunday, January 11, 2009

Living in fear

January 11, 2009

It just doesn't feel like my body is on my side these days. And I'm so tired. It has been so long since I felt good. Will that day ever come again? I don't want to complain - I'm grateful that I am where I am right now - no ostomy, post-surgery, etc. But that doesn't mean it's easy yet. Because it's not. And I get angry that it's not easy yet. Then I feel guilty for feeling anything other than gratitude for where I am.

Sometimes I want to turn off the guilt switch in my mind. I want to stop trying to make the best out of this situation and I just want to be ANGRY. I want to rant about how unfair all of this is. It is SO unfair. There is so much pain that I'm carrying around. I have lived through hell this year. Hell. I have been in physical pain and emotional pain for so long.

I think I'm even more angry because I really do feel like something is not right with my system yet. I just can't believe that what's happening is a part of the normal process. I shouldn't feel nauseous and sick every time I go to the bathroom (which is 10-12 times a day). I'm exhausted. I feel like my doctors haven't heard me. I'm scared. I'm so scared and I'm tired of being scared. I don't have much fight left in me. But I know that I am going to have to be smart tomorrow at my GI appointment and really verbalize exactly what's going on with me so that I am heard. I'm not saying that I think something is seriously wrong - it could be as simple as pouchitis (treatable with antibiotics), but I just don't think what I'm experiencing is part of the normal healing process.

Will I ever heal from this? Will I ever get past the fear that something tragic is going to happen to me again? I don't want to live my life in fear. I want my spirit to be free. I want to experience joy and peace. But there is fear everywhere I turn. God please, help me! I don't want to be afraid. I just don't know what to do.

Saturday, January 10, 2009

I need a good laugh

January 10, 2009

My mood has been all over the place today. I've gone from feeling really down thinking about my health to laughing hysterically as I played with my ever comical dog.

I'm tired of feeling down. I'm actually a little tired of thinking about myself. There's this song the band Mini Bar sings called Holiday from Myself. That's what I need. "I need a holiday from myself. I need some time away from being me." Maybe that's why the video I saw today on YouTube of the guy dressed up as a superhero struck me as so funny (http://www.youtube.com/watch?v=c87kpoBmYPg). I need to get in touch with my inner alter-ego/superhero. Really, I just need a good laugh. Any ideas?

Friday, January 9, 2009

Life on mute

January 9, 2009

I had a dream last night. I was at my high school reunion (my 15 year reunion was this past summer - though I didn't go) sitting around in a circle with all the women I went to high school with. Someone started talking about her baby, and I tried to respond, but got choked up and started crying. Everyone in the circle turned and looked at me. I desperately wanted to show everyone that I was okay, so I attempted to compose myself and with a smile on my face asked how many women there had children. All but two or three raised their hands. And then I asked in an angry, tearful voice, "And how many of you have given still birth?" I woke up then.

The dream has muted my day today. This afternoon I was rummaging through the drawer by my bed trying to find something and I came across a picture of me taken the day I was born. I had put the picture there when I was pregnant and I liked looking at it and baby pictures of Jeremy and wondering what our baby was going to look like. I could hardly stand to see that picture of myself. I have had dreams where a baby who looked just like the me in that picture was naked and crying and needed a mother.

This evening I took a warm bath and was playing the new Marc Cohn CD that he released after he fell victim to a carjacking and survived being shot in the head. It's about recovery and healing. I submerged my head in the bath water and listened to the mumbling music as my ears filled with water. I thought about losing Harper. I'm angry. I'm angry because I always thought that after someone I loved died I would still feel this connection to them - like their spirit would never leave me. That's not true. I have never felt Harper's presence. I want to feel her presence. I want to be her mother. I want to clothe her tiny little baby body and take care of her. Instead I feel dead.

And then questions swirl around in my head. Is it because she knows that I was willing to sacrifice her life for my own well being? Is that why there is this distance? Does she know that I resented her at one point? Oh God, the guilt is too much sometimes. Because I really did love that child. How can I say I loved her when I was willing to sacrifice her? How can I call myself a mother? And still my heart aches for her.

I don't want theological answers to these questions. I'm putting this all out there because I can only find peace in being authentic about this journey I'm navigating. The anger and the guilt and the sadness are all a part of it I suppose.

Thursday, January 8, 2009

Taking it easy a few more days

January 8, 2009

I pretty much did nothing today. Okay, yeah, I messed around on-line a little and paid some bills, but other than that I watched TV all day. My brother called me and I told him I was thinking about going out into the world just so I could say I did something today, but he talked me out of it. "Abby, you only have a few more days before you go back to work. I say you do whatever you feel like doing. You've earned it." I really didn't take much convincing.

One milestone I did achieve though, I took a bubble bath! You may not think that's a big deal, but for me it sure was. Yesterday Dr. T gave me the go-ahead. It's the first time in a long time that I haven't had an ostomy bag attached to me and I was able to totally relax in the tub. Yes, you actually can bathe and go swimming with an ostomy bag, but it wasn't something I ever felt comfortable or confident enough in doing to try. Plus, there was nothing relaxing for me about the idea of laying naked in a tub of water with a bag attached to me. So, as much as I am reluctant to admit it to my Tucson water-conscious friends, I filled the bathtub and totally submerged myself! Hopefully this weekend Jeremy will get our outdoor hot-tub running and we can enjoy that again as well. It's been a long time since I sat in the hot-tub. There's nothing quite like it!

So I know that Dr. T told me I could move ahead with my "normal" life, but I still don't feel normal - physically I mean. It's a strange thing, to have your body function in a whole new way. The most difficult part about it is that I feel like I've lost my sense of intuition about my body. Right now it feels like some thing's just not quite right. Dr. T insists that it's just my body learning how to function again. Okay. I guess I have to trust her - right? I keep telling myself to trust that every thing's okay, and that if anything gets worse I can get it checked out. I know that's true. It's just so difficult.

Wednesday, January 7, 2009

Let the games begin!

January 7, 2009
I'm sitting here in my living room, Django's on the couch beside me resting his head on me leg. Jeremy and Dan are playing music in the music room. Their music is just quietly drifting down the hallway. If I curled up in the blankets it would lull me to sleep. But for now I'm going to let it be the background music to my blog. I wish you could hear it . . . (I'll at least let you see a picture of Django resting his head on my leg!)






This morning when I got up to shower I was feeling a little worn out. I had one of those moments (do you ever have them?) when I caught a glimpse of myself in the mirror and stopped and just looked myself in the eye. I was so separate from myself. It was like I was looking into the eyes of a stranger. I looked sad. I wonder if that look will ever go away. Jeremy and I have this picture of us at my sister's wedding up on our fridge. We were laughing and so healthy and vibrant in that picture. There was a period of time during my recovery when I couldn't look at that picture. I turned it over so I wouldn't see who I used to be. It broke my heart.


I had the radio on while I was showering. The Springsteen song, Streets of Philadelphia came on and I almost started crying as I sang along to the first verse:

I was bruised and battered
And I couldn't tell what I felt
I was unrecognizable to myself
Saw my reflection in a window
I didn't know my own face
And then the verse:
Ain't no angel gonna greet me
It's just you and I my friend
And my clothes don't fit me no more
I walked a thousand miles just to slip this skin

And I started thinking about Harper then. I wondered, will she be an angel to greet me when I leave this world? My thoughts went all over the place. I started thinking about my family - Harper's family. I thought about all the aunts and uncles she has who would have loved her so much. I thought about Jeremy's brothers and sisters and how focused on children his family is; aunts and uncles doing things with the nieces and nephews because they just plain enjoy their company. I thought about my brother and sister and how much love there is for my niece and new nephew in my family. I thought about all the laughter there is in both families when everyone's together. The laughter and the children, it's just wonderful. There is so much love the whole family is missing out on with Harper's loss. One less child to tell the funny stories to at family gatherings. One less child to go sledding down the big hill. One less child to give kisses all around at hellos and goodbyes. Oh it hurts to think about.

I had my doctor's appointment this afternoon. The appointment was at the Cancer Center. As we were waiting a man who must have been in his late 50's sat across from us and started talking to us out of the blue. Normally it would have annoyed me. I would have wanted to wait quietly in my own little world, but today was different. He was there alone for one thing and my heart always goes out to people who are alone at the Cancer Center. He started telling us that he was diagnosed with lung cancer that spread into his bones in 1998. He said that they told him he had two months to live back in 1998. The steroids caused him to get cataracts and he had to have both lenses replaced and they caused some problems with his joints which caused him to get both hips replaced. He sat there smiling as he told us his tale. He took his hat off and rubbed his head, "But I am here and I can work out in my yard," he said.

I didn't say much to him. I just looked him in the eye as he told me what he had been through. When he got called away I told Jeremy, "It could have been so much worse." And it's true. It could have. I had the beginnings of those things - eye problems, joint pain - but nothing serious happened as a result. That man held on and fought hard for 11 years!! 11 years!! I was amazed by him - the man who sat there alone at the Cancer Center.

So at my appointment I explained my symptoms to Dr. T. She said that she was not concerned. She said it sounded like my body is just trying to figure out how to do this bowel movement thing again. She gave me a list of symptoms that would cause her concern. After doing an ever so wonderful exam (yowzah) she told me that I could go back to my "normal" activities of life. AND she said that I should be eating a regular diet again. "Fruits and vegetables too?" I asked with a huge smile on my face. She told me I absolutely should be eating fruits and vegetables now. She told me, of course, not to start eating them all at once, but that I could eat a normal diet now. To top it all off, she said that she doesn't need to see me until next year (unless symptoms start up or something)! And then my PIC line was pulled too! (No more flushing my line every night or wrapping my arm up to shower every day.)

Jeremy and I left the office floating! We made a date to go to Sushi Matsu for sushi this weekend to celebrate. I've been holding off on the sushi for fear the veggies would be too much for my system, but the doctor says it's a go. It was one of our frequent weekend meals "before." So my anxiety yesterday was pointless. Oh Abby . . .

Let the games begin!

(http://www.youtube.com/watch?v=9L9_8vwx2w8)

Tuesday, January 6, 2009

Anxiety creeps in

I am trying so hard not to feel anxious tonight, but it's not working. I have an appointment with my surgeon, Dr. T, tomorrow afternoon. I always get anxious before doctors' appointments these days. The worst case scenario rolls around in the back of my head and I get really freaked out. So here it is, my worst case scenario: I tell my surgeon about all the cramping and straining I've been having and she tells me that my j-pouch isn't working properly and she's going to have to do surgery to revise it. I will have to have another ileostomy until the revisions to the j-pouch heal.

How would I deal with that? And really, how much mental engery do I want to put towards picturing that happening to me? For my own sake, I'm not going to explore this topic any further. I would get through it because I had to. But that's not going to happen. I'm going to talk with Dr. T tomorrow and everything will be just fine. (Ahhhhh!!!!)

I went for a short walk this afternoon. The weather was just perfect; cool but not crisp air, warm sunshine. When I exercise by myself, whether it's walking or running, those times are really times that I think about who I am and who I want to be. I think part of it is because I feel so healthy and strong when I'm exercising and that's definitely part of who I want to be. Today I could picture this woman, this wise woman with a gentle spirit. I want to be that woman. I don't want everything I've been through this past year to have been in vain. I want to learn the lessons that are there for the learning. I will come out of this with a more beautiful spirit as a result- I will. And that's what this life journey is about - is it not?

I'm having a hard time finding a balance in dealing with Harper's loss. Today I went to see Marley & Me with a friend. I had read the book, so I knew that they lost a baby. I was prepared to see it play out on the big screen. But in knowing that it was coming, I shut off my emotions. I didn't shed a single tear. I was protecting myself. But where's the balance in protecting myself and in being authentic? Every time I shut off my emotions I feel like I'm not honoring Harper as I should. Yet there are times when I need to keep the flood gates closed either to enjoy myself (like when I go to a movie with a friend), or to protect myself around people I'm not safe in grieving around. I guess I just need to be patient with myself as I figure it all out.

Monday, January 5, 2009

Unconditional Love

January 5, 2009

I've been thinking today about all that Jeremy's done for me lately and I just feel so unworthy of him. Sometimes my insecurity gets the better of me and I ask him, "Do you wish you had never married me?" He tells me he loves me and wouldn't want to live without me. It's hard to accept sometimes, this thing called unconditional love. If he could tell me specifics about why he loves me, "Because you let me buy expensive guitars," then I would feel so much more in control! I would know what to do to keep him loving me. But when I probe the question further he just explains that I'm his partner and he needs me.

I really don't mean for this to sound like, "Oh poor Abby. Doesn't she have it tough because her husband loves her?" (Sarcasm intended) Part of the difficulty in my journey has been in letting the man who has seen everything ugly and gross about me, love me. It's not like he didn't see it all before, it's just that there wasn't as much to see before. So now I have to trust that the man who has helped me change my ostomy bag means it when he says he still loves me and wants me. I have to choose to trust him. Choosing to trust is much like choosing to hope. That means when those stupid, nagging thoughts that I'm unworthy of his love come buzzing into my mind, I have to swat them away. (Okay, my more likely response is that I go to him in tears asking him to tell me yet one more time that he loves me and won't leave me because of all we've been through. But I'm still working on it and Jeremy's patient with me!)

So as I'm blogging about this I'm seeing something a little more clearly about myself, and I'm not so sure I like it. All of the things that I felt were ugly and gross and would give my husband cause to stop loving me are superficial things. Has my understanding of love really been that shallow? Is that just part of the human condition, or at least the American condition? I have had more than a few people tell me how lucky I am to have Jeremy (no argument there) and remind me that there are a lot of men who would not have stuck around through all the difficulties we've had. It's sad really. I no longer want to buy into that.

I guess I'm just going to keep doing my best to buck the system and choose to trust in unconditional love.

Sunday, January 4, 2009

January 4, 2009

After a day or two of feeling well I start to get excited and think that I'm all better: that's it, my recovery is over! Oh Abby, when will you learn? I woke up this morning with my stomach a little off and I knew it would be a day I needed to stay close to the restroom. But not to worry, it was cloudy and rainy all day (one of the 30 days a year that happens here), so I wasn't tempted by the sunshine outside. I spent the entire day in my PJ's, reading and writing in bed. My body is tired out today too, all the muscles in my back are sore from my numerous trips to the bathroom. But I'm not complaining - my spirits are still high!

I am keenly aware of this cycle. I've noticed it before - hope followed by disappointment or heartbreak followed by hope and on and on. This has been a tough one for me to figure out too. Do I keep chosing hope? There are times when the heartbreak has been so great, it took everything in me to hold on to hope. I didn't know if I wanted to. I didn't know if I could. And really, there were times that the hope that I held came from outside myself. I received hope from co-workers who sent me cards in the mail or donated sick time to me, or from the friends of family members who I have never met before but who sent cards and prayers my way. I needed that hope. I wouldn't have survived without it.

What I have learned about hope is that it is a choice. When the fear of heartbreak starts creeping into my mind I do my best to shut out those thoughts. I can't dwell on those fears. That would be the death of hope. Even now, I'm tempted to list for you all the things that could go wrong for me right now, but I'm not going to. I'm not going to give any mental space to those thoughts right now. I'm going to hold on to hope that the future will be full of wonderful things, and trust that when the wonderful things don't happen I'll have the resources and the strength to deal with them. But I won't fear. I will hope . . .

Saturday, January 3, 2009

Figuring it all out

January 3, 2009
I've started writing today's blog a number of times and have just felt like I couldn't focus on one topic. Maybe I need to stop censoring myself. There's a lot going on in my mind that I want to sort through. So I'm just going to start writing . . .

The last couple of days I have felt so much peace. I have sought out the quiet. I'm not running from my thoughts anymore. I'm not afraid to sit in silence and let my mind wander. When did that change? And why did it happen?

I'm actually a little afraid to delve into why I think it happened for what it says about me. I know It's because I feel so much relief at no longer having an ostomy bag attached to me. I know that's why. I feel free. Those words, "I feel free," are so weak compared to what I'm really feeling. I carried so much shame around with that bag. I felt like a freak. Try as I might to present myself to the world in a "normal" state, I knew that underneath I was hiding something I thought of as grotesque. I had a part of my intestine sticking out of my stomach with a bag attached to that where my body deposited its feces. I believe I'm a pretty open and honest person and I think going through my life like I had to hide something from the world just went against the grain of who I was. Now that I no longer have that ostomy bag, I feel free.

But there is a part of me that feels guilty too. I feel guilty that I had so much shame about it. Crazy little cycle I've got going there, huh? I've been perusing different websites lately for people who have ostomies and I am absolutely amazed at these people who post pictures of their stomas (the part of the intestine that comes out of the abdomen wall). No shame. They talk about how happy they are to have their ostomy bags because it's given them a freedom they never had before, and I feel like I'm somehow lesser of a person because I carried so much shame about my bag. That's it. I feel like I was supposed to learn a lesson about not being ashamed, but that I didn't fully learn that lesson and I failed. I chose the shame, I didn't have to feel it. And I didn't get to work through that enough to live with the ostomy without shame. I hate feeling like I failed!

But where's the grace Abby? Haven't I also learned to be gracious with myself? I can forgive myself for that can't I? This has been an arduous journey to say the least. It's okay if I'm still figuring it all out.

Yesterday evening I was sitting in the bathtub looking at my body. I have so many scars now. Not just the scars from my surgeries, but stretch marks all over from the 100+ pounds of fluid I carried while I was on the steroids in the hospital. No more soft, beautiful skin. I laughed at how I used to feel like my body wasn't attractive. If I could go back in time and know how my body was going to change, I so would have enjoyed my body more. And then I thought, what's keeping me from enjoying my body now? If something else goes wrong in the future I could once again find myself sitting in a bathtub wondering why I didn't enjoy what I had when I had it thinking about my body's condition NOW! It's all a matter of perspective isn't it? So I looked down at my stretch marks and thought about how they symbolize my strength and my courage and I told myself they are beautiful. And I'm going to keep telling myself they are beautiful, because they are.

Friday, January 2, 2009

Keepin' it light

January 2, 2009

Things that made me smile today:
  • Seeing our neighbor's yard that had both Christmas decorations and a tree full of ripe grapefruit in it when I went for my walk. That kind of juxtaposition for a Midwestern girl is pretty funny. (And yes Mom, I went for a MILE walk today.)
  • Checking out the apparel and accessories at http://www.cafepress.com/jpouchgroup/427857 for people who no longer have a colon! I especially like the "I'd like to buy a bowel," mug and the "Got Guts?" t-shirt.
  • Talking with my sister and planning a weekend trip to Vegas with her; just my sister and me! My smile was extra big when I heard my brother-in-law get a little jealous that he wasn't allowed to go on the trip.
  • Dressing for my walk I was able to put on regular workout pants and a regular-sized t-shirt. I didn't have to worry about an ostomy pouch when choosing my wardrobe.
  • Every time I go to the bathroom I have to laugh at the arsenal of sore-bum accoutrements that I have handy.

Thursday, January 1, 2009

January 1, 2009
I woke up at 11:58 p.m. last night to the sound of fireworks going off at the Mission. I whispered "Happy New Year" to my husband who was also awake in bed next to me. Django wagged his tail without lifting his head from his warm spot at the end of the bed as if he understood what I said. But of course he understands what I say! Then I drifted back to sleep.

I was up about three times in the early morning hours to go the bathroom. The bathroom has become such a stressful place for me. I'm trying to think of things I can do to reduce my stress when I go (which is a lot these days -but I'm not complaining!). I started reading The Shack the other day. My dad gave it to me for Christmas. It dawned on me that I should read while I'm in the bathroom and that might prove to be a good distraction. I actually laughed at myself, "Ah, duh Abby! There's a reason that people read in the bathroom." Ha! I think it's helping me though.

When I finally woke up to start my day, I came out to the kitchen and my husband had started a fire in the fireplace. He had also brewed a pot of decaf coffee, the smell of which was tantalizing beyond belief. I haven't been drinking warm beverages because I'm worried they'll cause me to make extra trips to the bathroom, but this morning I couldn't resist. The picture we were forming needed me to have a cup of coffee in my hands. And so I partook of a cup of strong dark coffee with plenty of half and half in it. At first I turned down the sugar, but before I took a sip I looked into the mug and thought about the fulfillment that just a touch of sweetness would add so I asked my husband if he would hit me with a spoonful while he was adding the sugar to his own brew. I curled up in the "prayer blanket" my in-laws had given me before my last surgery with my coffee and my book and thought what a good day this was going to be.

My husband was milling about the kitchen when he spotted a hummingbird by the fountain in our backyard. I experienced Harper as a little hummingbird inside me, pulses and beats, and now every time I see a hummingbird I think of her. I smiled. Later in the morning as I was in the hammock reading my book I saw the hummingbird again. A wave of peace came over me.

I really haven't set any resolutions for this year. I'm just not feeling like I need to list off things I want to accomplish. I suppose that's a good place to be, huh? I'm living in the here and now, enjoying each moment for what it is. I was overcome with a sense of relief and joy today at how good I felt physically. There are these moments where I have no pain at all. I can't believe it. It's been so long since I have lived without pain of some sort. I would cry, but I'm just too happy to cry.

Sleepiness overtook me in the afternoon so I laid down and ended up taking a three hour nap. Oh that felt good. That's the way to see in the new year!

My husband's band is over right now. They have taken over one of the living space in our house with all their gear and instruments. They're practicing for tomorrow night's CD release party. It's like I'm listening to a musical translation of our year. It brings tears to my eyes.

Peace to you all . . .