Reprieve

December 19, 2010

I've been feeling some relief the last few days. I think my UC flare has been dying down. Whew! So not only does that mean my rectal pain has (for the most part) subsided, it also means my bowel movements are no longer like a faucet has been turned on every time I go. Hydration is so hard when things get like that, which means I feel faint and completely exhausted too. When I'm not flaring, I actually have bowel movements that are pretty close to solid and so I'm able to stay hydrated fairly easily. My frequency of bowel movements has gone down now that my flare has subsided too. Instead of getting up every hour and a half to two hours at night when flaring, I am able to get up once or twice a night. I can live with that.

I'm very much looking forward to my January 5th surgery consultation so I can move forward with having the rest of the UC removed from me. I'm also ever so grateful for the reprieve from pain. Thank you God.

Visions of sugar-plumbs

December 17, 2010

My dreams this week have been crazy. I'm almost embarrassed to say it (though I think those of you who are colonless or have bowel issues might understand), but I actually dreamt that I had a normal bowel movement. In reflecting on that dream, I think it was a hopeful sign. I've given a lot of thought to how having the revision surgery may affect me, and one of my hopes is that my bowel movements will be more "normal" as a result. (More "normal" being not going 12 times a day and being able to have bowel movements that come out larger than the size of a pencil - sorry if that's too much information.) I guess that hope has gone deeper into my psyche than I realized.

Then last night I had a nightmare about my upcoming hernia repair. I don't even want to call it a surgery because it's so minor, but apparently I'm a little more concerned about it than I've allowed myself to acknowledge. Last night I dreamt that my surgeon began cutting into me and completely opened me up and I hadn't even been put under. I started yelling, "What are you doing?! Stop! I can feel that!" I'm know that's a pretty common pre-surgery dream for folks, but it still has me shuddering a little.

So here's to an upcoming night of sweet dreams. Visions of sugar-plumbs would be okay too.

Healing for everyone

December 14, 2010

What time is it? 4:13? Oh man. That's way too early. You've got to go back to sleep. Lay on your back. Yeah. That'll help. Then you won't have to feel like you have to go to the bathroom so badly. Oh boy. Remember what sleeping was like when you had your ostomy? Remember how you couldn't lay on your left side like that? And no sleeping on your stomach. Are you sure you're up for that again?

I could feel my heart beat in my chest. I could feel my breathing quicken. Relax Abby. Don't think about that. Think about something else. I lay in the quiet and hear the thickness of the air around my ears. I focus on the pattern of both Jeremy and Django's inhale and exhale. I wonder if I'll have to have a PIC line again. I wonder if my sleep will be encumbered by tubes from my arm to a bag of fluids. Jessica has a PIC line right now because of her pregnancy. She's 24 weeks. That's when I lost Harper. 24 weeks. She still has some weeks to go before she meets the mark of when she lost her little girl. Oh the fear she's experiencing. . . I get it. I really do.

There's so much fear out there. What was it Jason was saying to me about Blake and lost innocence? I need to read those poems. That's how I feel, like pain has stolen my innocence. But that's how we all feel. Everyone is going through something. Everyone. Tara, Emma, Lisa, Maria, Tami, Jessica . . . take a deep breath Abby. Oh God. Why is there so much pain? I just don't get it. I can't even hope for a world without pain, can I? So if I can't hope for a world without pain, what can I hope for? You can hope to handle it with grace. And you can love Abby. Remember? You can love. Keep loving. But it's so hard to love. It really is. It's so hard to open my heart to the pain that other people are feeling. It touches something so deep inside of me. And it hurts. And quite honestly, it scares me. It does that for everyone Abby. Everyone feels that way. But we have to keep on doing it, don't we? Even when it hurts. Especially when it hurts.

Okay God. I'm praying right now from a place of fear and of skepticism and of complete overwhelm. But I'm praying because I have not lost hope that you will hear my prayer. The only things I feel I can even beseech you (if there is a you) for are peace, love, and comfort. Healing would be nice too God. Healing for everyone.

Back to the lab

December 13, 2010

Friday was one heck of a day for me. When I got to work, I just didn't know how I was going to manage another day in the amount of pain I was in. I don't recall being in this much rectal pain since after surgery. I wondered if I needed a dilation, as the symptoms I was experiencing suggested as much. I knew Dr. T was only in the GI Lab on Fridays, so I decided to see if I could get in to see her. But I've got to tell you, just making that decision totally stressed me out because I had to, yet again, leave work early to get it taken care of. I hate doing that. Grrrrr . . .

I also didn't exactly follow regular appointment scheduling procedure to get in. Thank goodness the folks in the GI Lab know me and were willing to go out of their way to help me get in. Jeremy doesn't work on Fridays, so he was able to drive me and be there with me.

They took me back to the prep area and Jeremy sat next to me while I stretched out on the gurney and they started my IV. He's always so entertaining in that setting and I was glad he was with me. Dr. T came back to say hello. "So you're in a lot of pain?" she asked. I fought back the tears as I told her I was. "We'll get in there and see what's going on. We're going to use general anesthesia on you then if that's okay since your pain level is so high." That was a-okay with me. There have been times that I have been scoped/dilated and I could hear myself yell in pain with the conscious sedation drugs. I didn't need any of that right now.

They wheeled me back to the procedure room and the anesthesiologist laughed as I assumed the position. "You really know the drill, don't you?" I smiled, but just couldn't laugh. Tears started to roll down my cheeks as the drugs were administered. I'm just so worn out.

The next thing I knew, I could hear people talking around me. "I'm cold. Could I get another blanket?" I mumbled in an intoxicated manner. "What?" Jeremy asked. Where am I? What's Jeremy doing here? Are they done already? The last thing I knew I was crying, looking up at the anesthesiologist telling him my face felt tingly. Ah yes. I must be done. "What did she say?" I asked Jeremy, but I must not have been talking clearly as he asked me again what I had just said. "What did she say?" I asked.

"She said you didn't need a dilation." I broke down in a full-on sob. "Oh no. No Abby. That's good, right? You didn't need a dilation," he leaned over me and held his face next to mine smoothing my hair as I continued to cry. He doesn't understand. No dilation? "She said your rectum was inflamed though, and she took a biopsy of the tissue in your pouch to see if you have an infection there. She said they'll know in 7 days. If you have an infection she'll put you on a course of antibiotics. But that's good Abby. You didn't need a dilation." I wish he would stop saying that's good. It's not good. It's horrible. "What's wrong Abby?" he said as he kept smoothing my hair.

"If it was just that I needed a dilation then it could have been done and over with and I would have some relief. But it's that the disease is flaring?" I could barely finish my sentence. "I have to keep going in this pain," I sobbed.

I got it together though, by the time we got home. I was just so tired. I'm sure the drugs had messed with my emotions a little too. Always a strange and scary feeling to come to after being under. Nothing a little sleep couldn't help improve a little. So over the weekend I have doubled up on me enemas and have doubled my Cipro intake (both within limits advised by my doctor). I have used the hot-tub several times which has helped manage my pain. I have slept and given myself permission to do very little. This morning I'm feeling a little better. I just hope I'm on the upswing now.

I told Dr. T I am ready for the revision surgery. She told Jeremy when I come in for the consultation she'll explain it all to me in detail so I know what I'm getting into. After the revision surgery there will be no more UC in my body to flare like this. No more disease!! For that I cannot wait.

One girl, one boy

December 10, 2010

Yesterday morning was not a pretty time around our household. This has been a really stressful week for both Jeremy and me. I won't bore you with the mundane details of the pile of stressors that have fallen upon us, but suffice it to say, we we were both at our respective tipping points. The discovery of the breakdown of the washing machine first thing in the morning was what pushed us over the edge and a loud argument ensued. No wait, it was actually this sentence: "Could you call a repairman?" that did it. For my part, if I remember correctly, there was slamming of a couple of doors, tossing my work bag aggressively into the car, and a few curse words uttered outside of Jeremy's earshot. But my memory is a little foggy about it all (conveniently).

On my drive to work I was able to come down from my adrenaline pumping and see what was going on between us. I shot off an e-mail to him when I got to my desk: "I'm sorry I got so upset and stormed around the house this morning. I think we're both really stressed out and trying to prove to each other that we're each more stressed than the other. We haven't been focusing on Team Cashman." I gave him a couple numbers for repair men as an olive branch. We talked later that day and he apologized for his part as well.

Then last night was The Great Cover Up, for which Jeremy performed Dean Martin cover songs at the Rialto Theater with a bunch of other local artists who covered other bands. The whole thing was a benefit for medical expenses for uninsured musicians and artists in Tucson. He was performing earlier in the evening, but still past my normal bedtime. I knew he wanted me to be there, and I really wanted to be there to see him perform. It was one of those things where, yeah, getting a good night's rest for me is incredibly important right now for my health, but doing something for my spouse and that makes me so proud of him is also important for my overall satisfaction of life. So I went.

This is where I'm going to gush about him. The guys in the band all looked and sounded so sharp. Jeremy had shaved and was dressing Dean-like for the gig. They were just a class act up on stage. And then he started singing, and I couldn't help but smile a big, proud smile. What a great crooner voice! I loved it. The band sounded amazing. And then he sang one of my favorites: Memories are made of this. I get choked up if I don't just outright cry every time I hear the line "One girl, one boy, some grief, some joy, memories are made of this." The same was true last night. And I thought that would be the extent of my emotional response, but no. The best was yet to come.

It probably went un-noticed by everyone there but me, but before he began singing another song he said, "This one is for my wife, who is here tonight." And then the music began, and my heart started beating quickly. And then he sang:

Watch the sunrise on a tropic isle
See the pyramids along the Nile
Just remember darlin', all the while
You belong to me

See the market place in old Algiers
Send me photographs and souvenirs
Just remember when a dream appears
You belong to me

I'll be so alone without you
Maybe you'll be lonesome too and blue

Fly the ocean in a silver plane
See the jungle when it's wet with rain
Just remember til you're home again
You belong to me

Fly the ocean in a silver plane
See the jungle when it's wet with rain
Just remember til you're home again
You belong to me

I kid you not, as I stood there swaying back and forth to the gentle melody, my legs were quivering. It was such a declaration of love. A public declaration of love. And I'll tell you what, there ain't much more romantic to me than that, especially coming from such a private man. I might even go so far as to say I swooned a little (smile).

But there was more behind that song for me than the public declaration of love too. He and I had talked about that song, how it was one he played on his acoustic guitar for me in our backyard as we sat out there with a fire in our chiminea one morning shortly after I had gotten out of the hospital and was recovering. The line "just remember till you're home again, you belong to me," was the kicker. He played lots of songs for me when I was in the hospital about being home again. The man knows what gets me. He knows what speaks to me.

One girl, one boy, some grief, some joy: Memories are made of this.

Trying it on for size

December 9, 2010

Now that I've made an appointment with Dr. T to consult about the j-pouch revision surgery, I've been living in a different mental space, preparing myself for life with an ostomy again. I am determined not to let this rock my world the way it did the first time around. You can do this Abby. You can handle it.

There were lots of things that made life with an ostomy difficult for me, one being that I never got a break from it. I could never just turn off the juices in my system and take my bag off and be free. It always had to be there, attached to my stomach, collecting bile if nothing else. It didn't take long for it to fill to a point that I could feel it bounce against my side as I walked. It was like I had a six inch long, four inch wide water balloon attached to me. Granted, I rarely let it fill up entirely before emptying it (if that happened it was usually at night when I was sleeping), but you get the picture.

Then there was the art of emptying the bag. Oh how soon I forget! It's not like you take the bag off and empty it that way. Oh no. The bag stays attached to your stomach as you unclip and then unfold the bottom of it and lean just so, so that you can empty the contents between your legs into the toilet. Without sounding too crude but wanting to give you an accurate depiction, let me just say that the scent associated with stool that has not been fully processed through one's colon carries quite the odor with it.

By far I think the hardest part of having the diverted ostomy for me was how quickly food went from my mouth to my bag. I kid you not, many a time I sat at a meal with friends or family and had not finished my meal before I began to feel the contents of my dinner begin to fill my bag. (I ate a lot slower then because I had to meticulously chew my food so I wouldn't get an obstruction.) I lost my appetite as a result. Seriously lost my appetite. I was losing around 3 pounds a week, and that was with me trying to gain weight. Hydration was hard then too. I felt faint throughout the day every day. And that was with me doing a liter of IV fluids every night at home.

I will say though, when I had my end ostomy (called an end ostomy because the part that stuck out of my stomach was the very end of my small intestine), that was not a problem. The food had further to travel and took longer to process before it reached my bag. I was actually able to get up to my pre-UC weight when I had it. If I have the revision surgery, I will have a diverted ostomy, not an end one. With a diverted ostomy, a hole is made somewhere in the middle of the length of my small intestine and pulled through a hole in my stomach to divert my stool from going through the rest of my system where other revisions have been made so those revisions can heal. Make sense?

My understanding is that one of the main risks in doing the revision surgery is that the veins (or whatever they are technically called) that supply blood to my j-pouch will not be long enough after the j-pouched is revised. The j-pouch can't function without that blood supply. If that happens, the surgery would not be successful and I could end up with a permanent end ostomy instead. I've been told the risk of that happening is low. I have heard of people in that situation whose surgeons attached the vein to the inside of the abdomen for a year or more to try to stretch it out so that the revision surgery could be completed later, though it didn't always stretch as necessary. Crazy huh?

This is where hope comes in to play for me. I am not going to live in fear of the worst happening. I'm going to hope for the best. I'm going to have faith that if the worst does happen, I will summon the strength and (intestinal) fortitude to move forward with my life. Even if the revision isn't successful and I end up with a permanent ostomy instead of a temporary one, the disease will be gone from my body. I can't help but believe that I will experience better health regardless. People with permanent ostomies are active, vibrant people. I will be one of those people, no matter what!

I know I'm writing this as though I've already decided to do the revision surgery, but I'm not 100% there yet. I'm trying the decision on for size right now. So far, it feels like the best fit of all my options. My appointment with Dr. T isn't till January 5th, so I've got a little time to check out the fit in my full length mirror.

Diary of a non-wimpy woman

December 8, 2010

The psychological aspect of pain is taking its toll on me. I used to think pain was just a physical thing. It was easy to think that way when the pain I experienced was short term. A sore throat maybe, sprained ankle. Throw in a migraine here and there and that was as bad as it got. Migraines were the worst, but I knew they would end. It feels like I've been dealing with pain in one form or another for a long time now, and it's exhausting me, both physically and mentally.

If I could just figure out how to get a handle on the psychological part of it, I know it would help a lot. So what are you telling yourself about it Abby? What's so distressing about it? I tell myself that I'm not tough enough. If I were just a little tougher, none of this would bother me. It's because I'm a wimp that I'm in pain.

Boy, just writing that makes me realize how untrue it is. I've been through hell and back with pain. I have not been giving myself credit that I deserve. It makes me sad that I've been so hard on myself. I need to be more gentle with myself. I'm not a wimp. I'm a strong woman who has endured more than her fair share of pain. So maybe that needs to be my new mantra: I am not a wimp!!

It was not too late

December 5, 2010

"She was dying." Dr. V's words have been stuck in my head since my appointment with him on Thursday. I knew it was serious. I felt like I was dying. I thought I was dying, I guess I just didn't realize that the doctors thought so too. Dr. V wasn't the first doctor to say that to me either. A year or so ago when I went to an appointment with my OB at the hospital, she told me that the nurses were talking about me saying, "She's the one who tried to die on us." The only time a doctor actually said something like that to me during my hospitalization was in the beginning, when Dr. S told me my situation was a "life or death" one.

On the one hand, hearing those words from Dr. V have provided a sense of relief for me. I wonder sometimes what's wrong with me? Why am I struggling so much with life now, with understanding it all? I'm having a hard time because it all happened so suddenly and because I almost lost my life. And I did lose the life of my daughter. It was just so much. It flipped me upside down and turned me inside out. Completely.

While I may have been, no, was dying, I was very aware of the life force inside me too. For those who were with me during that time, I think they would agree that life was all that was left of me. Everything else that had made up who I was before was stripped away and that life force was all that remained. It's an unreal thing to be stripped down to that point. To see the essence of what really makes me who I am as a living being, man, it's crazy. Because I'll tell ya, we do a lot of fooling ourselves about what makes us who we are.

How Harper fits into it all is still confusing to me. Were we sharing the same life force? Did she have her own little life force that she was trying to hold onto while fighting the disease too? Did my life trump hers? Why do I even spend so much time thinking about these things? Why can't I just let it be as it is? And you know, some days I can. But some days, when I'm thinking about my life and the impact I want to have, or the difference I want to make in this world, I get caught up in the game of trying to figure it all out. I get frustrated, confused, and sad. It's usually at that point that I stop myself. You don't have to understand it all to live a life of love Abby. Just keep doing your best to love. You'll figure the rest out in time. And then I'm able to let out a big sigh. Yes. Love. I can do that.

Angel Dream (Tom Petty)

I dreamed you, I saw your face
Caught my lifeline when drifting through space
I saw an angel, I saw my fate
I can only thank God it was not too late

Over mountains I floated away
Across an ocean I dreamed her name
I followed an angel down through the gates
I can only thank God it was not too late

Sing a little song of loneliness
Sing one to make me smile
Another round for everyone
I'm here for a little while

Now I'm walking this street on my own
But she's with me everywhere I go
Yeah I found an angel, I found my place
I can only thank God it was not too late
I can only thank God it was not too late
I can only thank God it was not too late

December 4, 2010

Thursday morning I had an appointment with Dr. V, the surgeon who did my first two surgeries. His nurse gave me a hug when she was me in the lobby. When she was with me in the exam room she said, "Dr. V is excited to see you." It was so sweet to me.

Dr. V is an older gentleman, with white hair and a strong accent (I believe he is from Columbia?). I'll just admit up front here that I idolize him a little. I mean come on, the man performed a procedure that saved my life. So I'll be honest and say I was excited to see him too. I wanted him to see how well I am. He saw me at my very, very worst, just about every day when I was hospitalized. And while I may not be at my best ever, the difference is no doubt drastic as was apparent when his jaw dropped when he opened the exam room door (though I'm sure he was being a little dramatic too).

"Stand up and let me see you!" he said with his arms wide open. "You look wonderful! Give me a hug!" he said, which I gladly did. "So tell me how things have been going." I refreshed his memory on the different issues I had post-surgery as it was one of his colleagues who did my third surgery and followed me after that. He began telling the student who was with him about me. "She was dying. She was so sick. How much blood did you lose Abigail?" I told him I knew I had five blood transfusions and two plasma transfusions. "Yes. She was dying. That was a very bad time for you," he said with a frown on his face. He explained the course of my illness to his student, looking to me for details and confirmation as he did so.

We talked about the reason for my visit yesterday (a minor hernia that needs repair), and then as his nurse was going over paperwork with me, he picked up the phone and began dictating into the phone. I'll tell you, it's kind of crazy to hear someone talk about the worst time of one's life like that. His voice was grave as he recounted my history and I couldn't help but tune out the nurse and listen to him as I heard him say, "And then her baby died and her symptoms improved slightly, but only briefly. There have been no pregnancies since."

As we ended the appointment, he patted my leg and said, "You made my day." I smiled at him and said, "Well you know you're my hero." I have to choke back the tears when I think about it all.

A profound moment happened for me during that visit. The nurse asked me what my pain level was when she was taking my vitals. Normally, I would have said a 1 or a 2, but their little pain scale with the corresponding faces showing differing levels of discomfort was right in front of my face. Hm. I said I was probably a 4 (but it might have been higher). And then they took my blood pressure and it was high, and I usually have low blood pressure. "Wow. I wonder what that's about?" I said. "Well you're pain is at a 4, so it makes sense to me," the nurse said. Duh Abby.

Something about that little exchange stuck with me. When I tough it out, I'm really not helping myself (again, Duh Abby). Subconsciously I may think I'm somehow more pleasant to be around and so people will like me better or something, I don't know. But no. By not seriously addressing the pain I'm in, I'm hurting myself physically. And that continuing pain wears on me.

Honestly? I'm worn out from not feeling well. Most mornings if I don't just break down and cry, there is some point where I'm fighting back the tears because I'm just so weary. I'm not exaggerating to say I've had probably 3 days in the last three years where I felt good and full of energy. I tell myself I can't feel bad because things aren't as bad as they were. Like if I acknowledge that I feel bad now I'm somehow dismissing the improvement I've made. But the truth is, I don't feel well. I understand that there is a new normal for me. Believe me. I understand, but this new normal stinks. It really does.

So here's where I'm going to unabashedly complain. I'm not going to suck it up and be a trooper. I'm going to tell it like it is. I am so very tired of doing the "rectal suspension" medications (two of them) at night. Almost every night I go through this conversation in my mind: "Just do them Abby. You know they'll make you feel better. Suck it up. Just do it and take your sleeping meds and knock yourself out and you won't even think about how uncomfortable it is."

Sleep is supposed to be a time of rejuvenation, which is really hard to do when you are trying to hold 120 mL of liquid medication in your rectum the whole night through. Rarely do I make it the whole night through by the way. Sometimes I am barely able to hold it ten minutes. If I get past the initial urge to evacuate, I can usually hold it till about 2:30 or 3:00 in the morning when I get up to use the bathroom. That's if and only if I've taken meds to help me sleep.

There are nights when no matter how much I do the talk in my mind, I cannot physically make myself reach for those damn enemas. On those nights I may be able to drift off to sleep with ease, but when I wake up, I'm in pain. Pain. I try to downplay the pain too. I've been wondering lately how much having UC in that small part of my rectum affects my overall sense of well being, not just when I know it's flaring (which is anytime I'm not doing the enemas), but when it's under control too. Is the fact that my body has that disease in it making it that much harder for me to fight off other things? Because it seems that I have one health issue after another these days. Is it just that I'm getting older? Or maybe it's just that I'm emotionally worn out from it all and so the minor health issues seem huge to me? I don't know.

As I'm pondering these things, the discussion about whether to have the revision surgery to remove my remaining rectum and re-do my j-pouch so it has a bigger opening for evacuating has begun. It's on my mind all the time. I'm in constant pain and so that's what I think about.

Jeremy and I have also renewed our discussions about the surgery (or surgeries because there would be two). The discussions aren't easy for me. He tells me all the time that the decision is mine as it's my body and he'll support me no matter what. "But what if I fall in that small percentage of people who end up with a permanent ostomy? Will helping me with that be too much for you? Will you still find me attractive? Will you resent me and all the care I require?" He tries to reassure me, but my fear makes it hard for me to hear him. He tells me that he has always known we were going to get old together and that we were going to be taking care of each other down the road anyway.

But I'm afraid. It may be my body, yes, but it is our relationship. And what I do to my body greatly impacts our relationship. He's been taxed so much by all we've been through. He's the one I've turned to the most. That wouldn't change with another major surgery. This surgery would mean that for at least three months I would have another temporary ostomy. I relied on him to help me with a lot of the care of the ostomy in the past. But really, he helped me because emotionally I couldn't be left to face my intestine sticking out of my abdomen by myself. Yeah, when there were complications with my ostomy he helped because we needed four hands to deal with the leaks and such, but for the most part his help was due to my emotional needs.

I am in a different place emotionally now than I was then - thank God in heaven for that. I realize that if I have this revision surgery now, how I handle it emotionally is going to determine how it affects our marriage. And if I choose to do this, I know I can handle it. It will be stressful for us, but it doesn't have to be as stressful as it was before. I know what I'm getting into this time. I know what to expect. I also have a lot more support in the ostomy world now than I did when I was in the trenches before.

So I have a consultation appointment with Dr. T about the revision surgery, just to explore it further (again). I'm making my list of questions that we have for her. I guess we'll take it from there. One step at a time. I applaud you if you've managed to read this entire entry. Writing it sure has been helpful to me.

The funny things we hold on to

November 28, 2010

My dad was here a few weeks ago for a short visit. We put him to work while he was here, helping us with a home improvement project. We worked hard, but had fun together as we completed the project. That evening, I made a barley bean soup and homemade bread for dinner. After dinner we sat in front of the fire and talked. We were all so tired. The crackling of the fire filled the sleepy silence. Jeremy dozed off on the couch. It was one of those moments that I was aware of Harper's absence and tears started to fall. I didn't want them to. I didn't want to be sad, but I miss her, especially when I'm around family. My dad loves his grandchildren, and I felt sad that my daughter was not one that I get to see bring him that joy.

As quickly as the tears started, they stopped, because a thought crossed my mind: This grief right now, this sadness? It's you feeling sorry for yourself, for what you don't have and what you can't give to your dad.

It's true. Grieving is really a selfish process. I'm not saying it's not natural. It absolutely is. And what does that say about us as humans that such a natural process is so focused on one's own self? I believe we were made that way. Yes, I'm sad for how Harper's loss has effected my family members and friends too, but if I'm being honest, the hardest part is about what's missing in my life. Maybe that's why grieiving is so hard for me sometimes too - because I think one of my core beliefs is that selfishness is wrong. So by allowing myself to grieve I'm having to do something dimatrically opposed to one of my core beliefs.

There's a balance in there somewhere too - knowing when my focus on my own loss has been enough already. It's just been really hard for me to know what's okay and what's not as a result. And I don't mean according to other people either. It's been hard for me to know just for myself what's okay. I don't know if any of this is making sense or not. I know I spend a lot of time on this blog sorting through all of this. Really, this is the first time I've ever personally grieved. It's funny, I used to think that because I have experienced episodes of major depression that I understood grief, but they are not the same. Definitely not the same. Anyway . . .

I got my haircut this weekend. I go to the Aveda Institute because it's so inexpensive and I have a really hard time spending money on things that are appearance related. (It's one of my hang-ups.) I always get tense when I get my hair cut, for two reasons really. The first is the most obvious, that inevitable question from the stylist: "So, do you have kids?" I prepare mentally for my response. What's it gonna be this time Abby? Yes, but not living? No? That's a tough one to answer? Fortunately, the young woman cutting my hair was very focused on my hair, so conversation was minimal, and that was fine by me.

The other reason haircuts are hard for me is because of my hair. I had stick straight hair my entire life, until, that is, pregnancy. Sometime during my pregnancy, the hair on the back of my head began to curl. At one point it was super curly, but has now tamed down to a crazy waviness. Hairstylists always comment on it and it's hard for me not to go into my explanation, which of course makes me think of Harper. I didn't say anything yesterday, but as the stylist commented and said she was going to blow dry out the curls, I thought, Oh don't get rid of the curl! It's one of my physical reminders of her. One that I sort of want to hold on to. One that proves that she was here and she still affects me physically.

We hold on to the funniest things, don't we?

All dogs go to heaven

November 23, 2010

Yesterday, one of our extended pet-family members was put to sleep. Skeeter was 14, going on 15 years old. She joined our family around the same time as Jeremy did. I lived with her for a few months before Jeremy and I got married, when she was just a puppy. Lately, when I've had the chance to go home to visit, I've taken care to say farewell to the old queen, suspecting each time might be my last.

When I think about Harper, I don't typically think about her being in "heaven." I struggle with my faith in an afterlife. Do I want there to be a heaven? Absolutely. That would be wonderful. Do I always believe there is one? No, not always. But today as I've been thinking about Skeeter, I was comforted by the thought that she is now in heaven with my Harper (because if there is a heaven, I'm certain dogs go there too, and I don't say that flippantly).

Pets, dogs in particular, have been a huge part of my life. If you've read my blog at all you know how important Django has been to me - what a companion and comfort through some really difficult times he has been, not to mention the comic relief he provides me daily. And so when I think about Harper being in heaven, I love to think of her having Skeeter there. I picture the two of them playing together, Skeeter looking out for Harper the way I imagine Django would have done had Harper stayed with us. It's a cheesy little fantasy, I know, but it's providing me some comfort and even bringing a smile to my face in the midst of sorrow.

The state of the GI system address

November 11, 2010

I know there are fellow j-pouchers and/or Ulcerative Colitis (UC) sufferers who may visit this blog from time to time, and I thought this might be a good time to give an update on my GI situation. I also know a lot of folks who have UC want to know what life may be like for them if they choose to have surgery to have their colons removed. So here's a little of what life post j-pouch has been like for me:

A little background: I was first diagnosed with UC only after I had already been hospitalized for a few days due to constant (and I mean constant) bloody diarrhea and dehydration (March of 2008). I was pregnant at the time, which complicated my course of treatment. It was apparently a freak thing that the pregnancy brought on a genetic predisposition of such a severe case so quickly. I had never had UC symptoms prior to pregnancy and my symptoms started immediately after I became pregnant.

After nearly a month of hospitalization, we lost our daughter and she was still born at five months along on April 22, 2008. My symptoms improved slightly after her death, and I was discharged home on a very high dose of oral steroids. I returned to the hospital four days later as I was getting much worse. The diagnosis of Toxic Mega Colon was mentioned, though to this day I don't know for sure if I had been given the diagnosis or not. Another course of IV medication was attempted to no avail. It was decided that my colon needed to be removed.

I had a subtotal colectomy on May 8, 2008. A small portion of my colon was left along with my rectum. The hope at the time was that that remainder would heal and would function for me. It was a calculated risk that didn't pay off. My j-pouch was created in October of 2008 and the remainder of my colon was removed at that time. My rectum was left, again a calculated risk. A PIC line was put in at that time as well and I did nightly IV fluids at home to help with hydration. My PIC line got infected at one point and I ended up hospitalized as a result. (Sidebar: As is often the case, with the disease came some horrible joint pain that once the remainder of my colon was removed left completely.)

My diverted ostomy had many problems which led to leaking stool which led to a skin infection around my stoma. I could no longer get an ostomy bag to stick to my skin due to the infection and was hospitalized. They had already completed my barium scoping to see how the j-pouch was healing and it was healing well so they decided it would be okay to do the ileostomy takedown surgery early since the skin infection was causing so many problems (December 2008).

I immediately began having a lot of pain when I had bowel movements. I had to strain and could barely get anything out of my system. After some time of trying to figure out what was going on, we realized scar tissue had been forming around the anastamosis where my small intestine and rectum had been connected. The scar tissue was essentially closing up the passage for me to be able to evacuate stool. I began doing dilations on a weekly basis to reopen the passage way (basically tearing the scar tissue open, or as I like to describe it, literally "ripping me a new one"). Because my pouch was so far up inside me, self-dilating was not a safe option, nor was it a pain-free option. I had to be consciously sedated to have the procedure done each week.

My doctors wanted me to have surgery to rectify the situation and to remove my remaining rectum which was still (and is still) actively diseased. I did not want another surgery and was not willing to give up on the dilations finally "taking." After somewhere between 10-13 dilations (I lost count), it finally took. During one of the times I was being dilated (and also scoped), a biopsy was done and I was diagnosed with pouchitis for which I was prescribed Cipro which I continue to take on a maintenance level daily.

I have had one bowel obstruction which landed me in the hospital, but which resolved itself without requiring any surgery. "At least we'll know what's happening if that kind of pain ever hits again," Jeremy and I tried to reassure each other. Apparently bowel obstructions are something that happens more frequently to j-pouchers than to you lucky colon-people (though obviously it happens to people with colons too!).

So because I still have UC in my rectum, I do two enemas each night - mesalamine and hydrocortisone to treat it. When I do them regularly, I have no problems. The thing is, it wears on me psychologically to have to do enemas every night as I'm getting all comfy and sleepy in bed, so sometimes I give myself a break and skip them. I can actually skip them for a week or so before my UC symptoms start up again. But after that, I start seeing a little blood (not much) in my stool, and I start to feel pressure (kind of like I have to go to the bathroom really bad all the time) and pain. After a couple/few days back on the enemas I'm better. So it's a balance for me of which is worse.

My GI doctor says that the Cipro I take may actually be treating the UC and not pouchitis (though I think there is some difference of opinion in the medical community as to whether Cipro helps UC or not). What I know is when I stop taking the Cipro, I get incredibly painful, explosive gas - all day long.

I have to have a pouchoscopy (a colonoscopy for people without their colons) every year to check for pre-cancerous cells. The good thing though is that I don't have to drink the colonoscopy prep beverages that you colon-people have to drink.

Because of all the straining I did when I went to the bathroom after my surgeries, I have a hernia near the top of my incision. The hernia has gotten worse over time and I am scheduled to meet with my surgeon on December 2nd to decide if something needs to be done about it or not.

At this point, I have bowel movements eight to ten times a day. Much of the time my stools are like water. Hydration is therefore a challenge for me. I can many times improve their consistency by eating certain foods and avoiding others, and by taking Immodium. I take Immodium numerous times each day, which helps. There are certain foods that many j-pouchers avoid. I eat whatever I want, but do so knowing that there may be consequences such as watery stools, "butt burn" (the name speaks for itself), and increased frequency of stools.

For the most part, I'm used to my new lifestyle. I get weary of it sometimes, yes. But other times I remind myself that I'm alive, and that's what matters.

And that's the state of my GI system to date.

November 10, 2010

As the holidays are fast approaching, I decided to bulk up my coping skills and support network by attending a grief support group last night. It was a group specifically for family members who have lost a child either during pregnancy or infancy. I had gone to the group once last year at this time and decided to give it another try. I am feeling very self-conscious these days that I am still grieving. It's been two and a half years since we lost Harper, and while I know that grieving is a long process, I don't believe that people in general understand that. Thus my self-consciousness. It's not that I'm in the throws of sorrow on a daily basis (here's my self-consciousness again wanting to explain to people how normal I am - ha), it's just that the holidays are darn hard.

Because we were specifically trying to get pregnant when we got pregnant with Harper, I happen to know that we conceived her if not on Thanksgiving day (which I believe because of my meticulous charting), then on Thanksgiving weekend. Needless to say, the holiday has a whole different layer to it now. For months, no, well actually for well over a year, I was asked at every appointment when my last period was prior to getting pregnant, so of course November 12, 2008, is a date that doesn't go by without notice.

I'm not going to go into detail about my fantasies of what family life would be like during the holidays with Harper. But they're there. I thought about what it would be like to have her, just over two years old, during this time of year. I thought about that when she was growing inside me, fluttering around, my little hummingbird.

So all these thoughts and accompanying feelings have been ganging up on me a little lately, and I went to the group last night. It is SO hard to go to a support group with strangers and to open up about something so incredibly personal. It is even harder to open the wound and to hear the pain of so many other people too. I fought off feelings of hopelessness as I listened to all the heartache and loss contained in that room. But it's a place I can go where I know I will be understood. So many heads nodded in agreement and understanding with the things I said. I don't have to feel self-conscious there about grieving.

We ended the group with sharing what we were thankful for about our babies. I loved that the leader talked about our babies. I might have been seeking that out more than anything last night. That acknowledgement that Harper was my baby. It's a strange thing, but I have this feeling that because the other people in my life for the most part didn't ever get to see her or hold her or feel her move, that to them she wasn't a real person - a baby. But she was. I have to fight the urge to whip out pictures of her to show to people to prove that in fact I had a baby. I fully acknowledge that this assumption could be all in my own head, but it's there nonetheless. I've been thinking that having a memorial service for her could go a long way in helping me to acknowledge her "realness" and thereby help me heal. But I don't know . . .

Anyway. As I was saying, we ended the group with sharing what we were thankful for about our babies. My cheeks were wet with tears the entire time, so to say that I started crying then wouldn't exactly be accurate because I don't think I really stopped crying from the moment I sat down. A whole new wave of tears swept over me when I said I was thankful that I got to see what a child that Jeremy and I created together looked like, and I was thankful for the night I gave birth to her, which was the most sacred and beautiful night of my life.

I'm trying to focus on the things I'm looking forward to about the holidays: the cooking, the baking, the company, and all the fun activities, but it's a balancing act. I just need to give myself permission to let my feelings be what they are and to be authentic. It's getting better. Last year I didn't break down sobbing at the Thanksgiving table the way I did the year before that. Maybe even this year I'll be able to include Harper in a prayer of gratitude as I reflect on all the things for which I'm thankful.

The Art of Contentment

November 4, 2010

A while back I was thinking about how, when I was in the hospital, I wept many, many times saying, "All I want is my life back. We had a good life. Can't we just go back in time? I just want to be home." My heart yearned to be with Jeremy and Django in the safety and comfort of home.

It dawned on me that I have that now. I have all I ever wanted. I have all that was important to me, all that I longed for when things were as bad as they could ever get (at least I hope they never get worse than that - smile). And so lately I've been focusing on contentment. I'm not just talking about being grateful. I'm talking about being content.

I take my time doing the dishes, wiping down the counters and the sink. I leave the kitchen at night all clean and orderly and I feel content. I transfer loads of laundry and fold a load of clean clothes and think I'm taking care of us. We spend a morning in the yard, hacking down dead branches, pulling weeds from the rocks, sweeping off the patio. Oh this is satisfying. I've been making larger meals on the weekends - a big pot of soup, homemade bread. We eat what we want and I freeze the rest for my work lunches. On Saturdays and Sundays we walk Django in the early morning hours. In the afternoons I take a nice long nap - without guilt because I know I've been working hard. And this is all I want. I don't need more. I don't want more. And I am so very content.

But it takes work to be content. And how funny is that? That contentment should take work? For me the work is telling myself to be still. To notice what I have. Not to pine for more. (You don't need new kitchen cabinets Abby. That won't change a thing inside you. ) Not to always be planning the next accomplishment meanwhile missing today. And also, not to dwell on the heartache of the past. I don't deny the feelings of grief when they show up. I settle in with them for a bit, knowing their stay won't be long. And when they have done their job, I open the door and send them on their way.

For now, I'm still working on the art of contentment, because I believe it's an art. But man, the outcome is a pretty amazing piece of work.

Moving forward

August 31, 2010

If we lived in the days of wearing a black arm band while mourning, I believe I would be to the point where I would take my band off. There are still surprises for me once in a while. Things I didn't realize would remind me of Harper but do. For the most part though, I know what to expect and can prepare. I don't break down crying when reminded. If there is something that hits me hard, I'm able to hold onto it and process it at a later, more appropriate time. I think about her every day. Every day. But more often than not, it is with a tender sadness and awe.

I'm feeling tired of my grief. I'm tired of the self absorption that accompanies grief. I guess that's part of the process too. Part of what helps us move forward. And that's what I'm trying to do: move forward. Slowly but surely I'm doing it.

Something that happened

August 18, 2010

The feelings are fading. Especially the fear. I find myself reminded of something that happened in the hospital and my entire body is no longer affected by the memory. I can talk to people about my experiences without the urgency I used to have. It's becoming something that happened. I'm not weepy any more. I'm finding a routine, a rhythm to my life that is familiar. Ah yes. I'm remembering how my life felt. I remember. But it feels like this life now is muted somehow. Faint whispers of what it once was. It's not bad. The familiarity is comforting. I still wonder though, will the colors ever be as crisp as they once were? Will excitement ever reach the level it once did? Will it always be tempered somewhat with fear or sadness?

I am not fully engaged in my life yet. I can see myself holding my arm up, keeping everything at a distance. A safe distance. I laugh at the irony now when I picture myself in the hospital struggling to get up and go to the bathroom. Go to the bathroom. That's all you have to do. Just keep going Abby. Focus on what you have to do and you can do it. What did I fight so hard for if not to LIVE and to live fully? Then for crying out loud Abby - DO IT! Live fully. Don't be afraid. Hope. Love. Dream. You can do it. I know you can. How do I know? Because I've seen you do it. I've seen you face everything you were afraid of. And you survived.

That's right. I survived. (I'm trying hard not to bust out into song. That's right. You know what I'm talking about. I know you're hearing it too. That's okay, right? It's a good song to focus on once in a while. Hope you're smiling . . .)

No guilt

August 13, 2010

I had a massage last night. Oh it was so wonderful. Getting massages these days isn't just doing something luxurious. It's therapeutic for me. It's an act of showing love to this body of mine that I have so many negative feelings about. I'm trying to rebuild a foundation that has crumbled; a foundation of gratitude, trust, and care.

I'm keenly aware of the fact that if we had kids, massages would not be something I would indulge in. I have a hard enough time spending money on myself as it is, but if we had kids, no way would I be able to spend the money. I'm aware of that any time I buy a mocha or chai tea latte too. I'm aware of it as I take a two hour nap on a Saturday and/or Sunday afternoon.

I don't want kids right now. I can't say I won't want them in the future, but right now, I don't. Jeremy and I spent ten years of our married life NOT wanting kids. Before we decided to try to get pregnant with Harper, we spent a lot of time going over the pros and cons, talking about all the sacrifices we would have to make, discussing the financial ramifications, etc., etc. When I say a lot of time, I'm talking years. Even when we tried to get pregnant with Harper, we had said we would try for two months and if it didn't happen, it wasn't meant to be. Of course I got pregnant the first month.

It's a strange paradox too - grieving the loss of a child and being in a place of not wanting children. I've finally gotten to a place where I can say that I don't want a baby right now without feeling like I'm betraying Harper. I am not yet to the place where I can say "I'm happy I don't have kids." I feel like it should be okay to say that, but there is this little voice in the back of my head that says, "But if you say that then you're saying you didn't want Harper." I know, I know. That's not what that means. It just all gets so mixed up in my mind. The only reason I'm writing about this is to share with people how complicated the grief process is.

Until I get it all figured out, I'm going to allow myself to enjoy my mochas and massages. No guilt! Right?

The moments she's missing

August 6, 2010

It was dusk and the sun had gone down without me realizing it, so the house was dark; no lights on yet. I timidly opened the door to his music room and walked in. He has a sleeping bag spread out on the floor for when he wants to get comfortable and really listen to an album. I sat down on the sleeping bag and then laid back and looked up at the ceiling fan. He sat down near me and crossed his legs. The new Lost Dogs CD was playing. I repositioned myself so my head was in his lap. He clicked through different songs, pointing out the things he liked about each of them. We were mostly quiet though, just listening. It wasn't a scene that I had fantasized about before, but I could picture her there with us nonetheless. She would have been laying on my stomach, following the flow of her parents' mood. She probably would have drifted off to sleep, it being her bedtime and all. He couldn't see my tears in the darkness as they slipped out the corners of my eyes. I didn't sob. I didn't weep. Just a few quick tears.

He moved to lay down next to me. "There are some moments where I can feel that she's missing," I said to him. He nodded in agreement.

She never really had a chance

August 4, 2010

I've been sick the last couple of days. (I hate writing that. I hate being sick and I feel like there's always something wrong with my stupid body and I'm embarrassed to write that I'm sick, yet again.) This morning I went to the lab and had a chest x-ray done. As I was changing into the paper gown and donning a lead apron, I thought about the many, many x-rays I've had done the past few years. I thought about all that radiation that my body has been exposed to. And then I thought about Harper, and all the radiation she was exposed to. And I thought about the medications she was exposed to. And about the way she was nourished in the final weeks of her life (through TPN - chemically engineered nourishment that was pumped straight to my heart), and about how she never really had a chance. I was deluding myself the times I said out loud, "I'm leaving here with my baby and my colon."

Then it hit me. Saying "she never really had a chance," is so close to saying that this was part of the plan. This is the way my life was supposed to unfold. And before all of this happened, I used to believe that there was a purpose for things, a reason. A plan, if you will. But then when my own body turned on me and nearly killed me, when my daughter died inside me and I had to deliver her, I just couldn't believe that any more. I just couldn't. That "God" had planned for this to happen to me? No thanks. And so I've been left to sort through the why of it without the foundation that I used to rely on to explain it to me. And it has left me devastated, fearful, and frustrated.

I tell myself sometimes, You don't need to have life all figured out to keep on living it Abby. You just keep going, day after day. Do you think everyone else around you has it all figured out? No. But everyone else keeps on going too. And I marvel at how people do that. Do other people think about these things? How do they reconcile the pain? It amazes me, that we as a species keep on plugging away without having the answers, or in the very best situations, having answers built on faith that they are true.

It's funny though. I've almost come full circle in my beliefs. I'm almost to the point where I need to believe in a plan again, because living my life without knowing there is a reason is too depressing. It's kept some anger and pain at bay, but not for long. Perhaps it's time to entertain those thoughts and just accept the emotions that will come with them.

How've you been?

August 2, 2010

I was at the doctor's office today, waiting for my name to be called, when a former co-worker walked in. Someone I hadn't seen in three years. Three long years. "How've you been?" he asked with a big smile on his face. "I'm doing alright," I answered. We're meeting in the doctor's office, maybe he'll think my lack of energy and enthusiasm is because I'm not feeling well.

We chit-chatted awkwardly as we both waited, and then my name was called. I was so relieved. What do I say? How do you sum up three important years in a casual conversation. You don't, right? You don't. But my world has changed. My entire world has changed. But it's left unsaid as it should be in this situation. It's just such a strange thing. To talk with someone who knew me then, right before my world fell apart, and who has no idea.

But it was okay too, not to spill myself all over the place. To remain composed. To hold within myself the most important moments of who I am. It was okay.

I will not fear today

July 27, 2010

Yesterday at work I was reading through the medical records of one of my clients and hospital memories began to flood my mind. I wonder what it would be like to read through my records. How would those pages depict the most horrendous days of my life? How would they talk about Harper and her birth? I bet I could read about every time we listened to her heart beat. They must have made some notation about that. Would they have written down any comments I made during that time, little notes anywhere speaking to my state of mind or emotional wellbeing? I realized I had been holding my breath and forced myself to exhale. My heart was beating quickly. I looked out the window at the cityscape, but that's not what I saw. I saw myself in the ER on the day I thought I was going to die. I saw myself losing consciousness several times that day. I felt the humiliation I felt when my bed pan overflowed with blood and feces there beneath me in the bed. I felt the pointlessness of the fight for life because I had just lost Harper. It's been two years and I still struggle to find the courage within myself to face a life that I fear holds more pain, more loss, more heartache. It takes so much work, so much work to sort through the mess that grief made when it hijacked my thought processes. But still I soldier on. I look for the moments of ease in my life, the people who I can relax around, who understand that I'm still sorting through it all and they are okay with that. Those people have become an oasis for me. Because every day it's a struggle in my mind to make sense of my life now. I'm thankful for the moments of distraction, for laughter, for a good night's sleep without fitful dreams.

Here I sit. Finishing my cup of coffee, preparing myself for a day that I have decided will be a good one. Telling myself in my constant state of prayer that there will be goodness today. There will be goodness that I will notice and will embrace. I will not fear today.

Inception Spoiler Alert

July 25, 2010

Spoiler Alert! This blog is about the movie Inception, and I do discuss the ending.

He was looking for his children. He saw them in his dreams, only he couldn't see their faces. Hm. I understand that. I've been looking for my daughter in my dreams too. And I can't find her. I desperately want to know what she looks like. I want to see her face, just once. I'd do just about anything to see it. And then the end. He got to see them, his children. Tears welled up inside me and began seeping from the corner of my eyes. How silly I felt. I don't think anyone else was crying. It wasn't exactly a crying kind of movie. But I did.

The beginning of us

July 19, 2010

In a year full of dates that make my heart hurt, today is one that does quite the opposite. Fourteen years ago today, Jeremy and I went on our first date. It was the offical beginning of the story of us. We sat at our outdoor table at the Freighthouse and talked and ate. At least I ate. Jeremy barely touched his food. I thought it was because I wasn't carrying enough of the conversation so he didn't have time to eat, so I excused myself to the restroom to let him catch up. But when I came back to the table, he still had hardly touched a thing. Later I found out he was too nervous to eat.

I remember bits and pieces of our conversations that night. I talked about wanting to go to law school one day. He talked about his love of music. Ah yes! He's got passion! I remember looking at his hands and thinking how handsome they were. We walked through downtown Stillwater and then walked along the river and talked and talked. And laughed. He always made me laugh. I hadn't planned on falling in love. Really. But when I walked into my apartment that night after the date, I couldn't keep the smile off of my face. My roommates teased me, "I thought you said he was just a friend?"

That was the beginning. The beginning of us.

We just do

July 12, 2010

Jeremy is a huge Tom Petty fan. We've had Mo Jo playing in our home since it was released. Jeremy is eagerly anticipating the concert he'll be attending in September with a friend in Phoenix. There is a song on Mo Jo that tugs on my heart strings every time I hear it. "I knew you'd like that song," Jeremy said the first time he played it for me. Last night was no exception.

We were driving back from an end of the weekend iced mocha run. Mo Jo was playing. That song came on. I was mesmerized by the rhythm, the lyrics, my memories. All of it. Tears started streaming down my face. "What's wrong sweetie?" he asked. "What are you thinking about?"

"Harper. And all that we've been through. It could be so different Jeremy," I sobbed and doubled over, hugging my knees to my chest. I didn't want to look at my bare legs with all their scars. They only reminded me of more pain. I wanted to hide them from myself. "Her second birthday would be coming up. When will it stop hurting? It hurts every day. I try to think about the future and make plans but then I think, what's the point?" I saw his face. His eyes were welled up. Our tears were interrupted by Django (who had gone along for the ride). He went on full alert when he saw a short, pudgy dog in our neighborhood. He started to make his muffled barking sound. Jeremy and I laughed. "So tough."

My mind wandered to one of my friends who had lost a daughter. How does she do it? How does she keep on going? And not just her. Everyone. We all have this pain and loss and grief, and we keep on going. How do we do it? We just do. We just do.

Cool relief

July 8, 2010

I had moments of sweet relief this weekend. Fleeting moments, but ones I held tight to nonetheless. I went to Barnes & Noble by myself, just to browse, to dive into the beauty of the book covers, the stationary, and yes, the baking books! As I walked into the store I inhaled deeply the scent of coffee and books. A smile crept across my face. It was open mic night in the coffee shop area and a group of old hippies strummed their guitars and sang Peter, Paul & Mary songs. After perusing the gifts and greeting cards, I made a beeline for the baking books. Oh they were beautiful; pictures of scrumptious cakes and artisan breads. I poured over the recipes and made mental notes of the techniques described for getting the perfect pie crust. And then I had to force myself to walk away before I started making purchases my budget could not support. But it was a wonderful experience.

On Sunday Jeremy and I went to our HOA pool. For a while it was just the two of us there. We played in the water and laughed together. We held ourselves in the water with our legs swung over the edge of the pool and talked. And for a moment, I laid on my back and floated in the cool water and looked up at the blue sky and white clouds above me. I let the fluid silence soak me and breathed deeply. Another moment I would hold onto. A moment of relief from the anxious thoughts swarming my mind. Cool relief.

I'll get there

July 2, 2010

I've been in a negative head space lately. And you know what? I'm kind of embarrassed about it. Like it's my fault or something. Like it's a character flaw or failing on my part. Geez Abby. Let it go. But here I am, having a hard time. Again.

You should be over this by now. No one's going to want to spend time with you any more. You're so negative. You're going to be one of those people who only talks about their health or their depression or their losses. One of those people that others see coming and turn to go the other way. You better be quiet about it.
I don't know why, but I've been in a lot of pain lately. All day long. I broke down sobbing on my way in to work the other day. Suck it up Abby. You've got to do this. You've got to work. Keep going. So I did. But every time I felt the pain, I just really wanted to give up. I guess I'm just tired. Plum tuckered out. I wish I knew what was causing the pain. It was the same thing a couple of weeks ago that caused me to go in and see Dr. G, and then have my pouchoscopy procedure that said everything looked fine. Then why the heck am I having these days where I'm in so much pain? I think part of the feeling of wanting to give up comes from feeling like there aren't answers. But sometimes we have to live without answers, don't we? It's hard. There's no way around it. But we all have to do it. We make sense of what we can, and try to live the rest. I guess I just need to trust that in the afterlife things will make sense to me.

I've been alone a lot lately too. That probably isn't the best thing for me. I haven't been reaching out to friends much. I've been eating more comfort foods than usual. I'm trying to keep myself exercising because I know that's good for me, but I get on the treadmill and walk for 10 minutes and think, "Ah, what's the point?"

I know! Don't you just want to shake me?! I certainly want to give myself a good kick in the pants. Snap out of it Abby! Come on already! I'll get there. I will. I always do.

Falling tears

June 24, 2010

I just wanted to see her picture. To reassure myself that she wasn't a dream. As if the sadness in my heart doesn't remind me of that every day. But still, I wanted something physical. There is a particular picture of her that I love. I love it because she looks like a living baby to me. It's not that I want to fool myself that she was alive. That's not why I like it. It's that when she looks alive I can focus on her and not on the fact that she was dead. I looked at the soft skin of her shoulder and wanted desperately to kiss her. The tears dropped down my cheeks. I didn't even realize they had been building inside me but as they released I felt myself open up and relax. I let myself feel my love for her. I didn't keep it at bay. Along with the love comes the pain, but I let myself feel that too. She was a little person, I thought. Sometimes I really do feel like she was a dream and I'm almost surprised at the fact that she wasn't.

I analyzed her features. Everything about her face was Jeremy. Everything. But darn if that little girl didn't have my hands. I could almost feel her skin against my lips. But I never kissed her. I had a daughter that I never kissed. Oh that makes me ache inside.

My second favorite picture is of Jeremy holding her. You can see how tiny she was in that picture. Jeremy is smiling a sad and tired smile. And this time I noticed that his eyes were wet. I had never noticed that before. My heart broke for him; for the strength that he maintained for me, the gentility he possessed, the exhaustion he must have felt. His eyes in that picture said so much. So much. And my tears kept falling.

Pouchoscopy

June 21, 2010

I had one of my frequently reocurring dreams the other night. It's one where I'm back in college. There is this time warp thing happening so that it's simultaneously the mid-90's and the present time. The time warp creates this kind of anxious confusion for me. I'm not exactly sure what I should be doing. I'm trying to settle into a dorm room in some type of hostile environment which makes settling impossible. I'm keenly aware of the fact that I need to get my mail, only I get lost trying to find my mail box and I worry that I'm going to get in trouble because there are months worth of mail waiting for me. I get lost trying to move my clothes from some unknown location to my dorm room. And then there's Jeremy. All of a sudden I realize he's not with me and so none of this can be right. And I don't know how to get to him, but I know that I need to be with him.

I hate that dream. I hate it. I wake up all anxious and feeling guilty for some reason too. I look over at Jeremy sleeping next to me. It was just a dream Abby. Just a dream. Friday morning before we left for my dilation we took Django for a walk. And as we walked, we talked about Harper. We talked about the guilt we both have felt over everything that happened. Guilt is a normal part of grief and loss. It's a part of the process that can really mess you up too. We talked to each other about how we handled our own respective guilt and reflected to each other how we viewed the other's guilt. There has been this balance we have had to find as we go through the healing process together, a balance of separateness and togetherness. There are times that we desperately need to know we are in this thing together, and other times where we need to acknowledge how individual both of our experiences are. Yesterday's conversation was a beautiful mixture of both.

As I laid on the gurney with the IV in my arm, I looked up at Jeremy standing out of the nurse's way. I saw his blond eyebrows. They always remind me of Harper. We heard a voice in the bay area next to ours. Jeremy mouthed the name of a doctor. I smiled and nodded. Dr. C. He was with us through it all. He was a fellow who worked with Dr. I. I can't see Dr. C without remembering him sitting in my room with my mom and me on the labor and delivery floor. They had already started to induce my labor. It was dark outside. He sat next to my bed with a defeated look on his face. He told me we could have another baby. I knew he said that because he wanted to make everything better. His bottom lip quivered with emotion as he talked with mom and me.

The dilation went well. I actually didn't need to be dilated. And even better than that, Dr. T said everything looked really good. She said the enemas I started in January were making a big difference for me, she could tell. She also said she eventually wanted me to have the revision surgery. (Why I don't know. She talked to Jeremy about it while I was in recovery, so I didn't to ask questions and I don't think he got into that with her.) So while this is great news, I'm still confused about all the pain I was in last week. The pain is gone now though, so I guess I'll take it as a blessing. I would have had to have the procedure done in August anyway for my annual exam, so even though the dilation wasn't necessary, the scoping served a purpose.

Thanks for your well wishes and good thoughts. That's the word for now.

It's his cheese too

June 18, 2010

I have my dilation scheduled for 10:30 this morning. We have to get there an hour before for paperwork and prep. Because I have no colon, the only prep I have to do is not drink or eat for four hours before the procedure. I don't have to drink the colon prep stuff that those of you who have experienced a colonoscopy have had the pleasure of drinking. Whew. So here I am now, up at 5:00 a.m. trying to hydrate myself good and plenty for the next hour so starting my IV is easy for the nurse. The last couple of days I've been drinking more water than I usually do (which is a lot anyway) to try to stay hydrated too. They have enough problems starting IV's on me due to scar tissue that's formed on my veins from so many needles (I sound like a drug addict don't I?), dehydration is the last thing I need! I also thought I better have a cup of coffee while I can so I don't get a caffeine headache. I don't mind getting up early because I know after the procedure I'll be all drugged up and sleepy and will nap the afternoon away anyway.

My OB/GYN called me this week with the results of my lab work I did last week. She said my thyroid was normal, which was great. When it came to the results of my hormone levels she said there are three ways those results can go. One, they can show very clearly that my hormones are normal. Two, they can show that I am very clearly going through premature menopause. And three, they can be confusing and not show clearly either way. Guess which way my results went? Yep. Number three. She said if we were trying to get pregnant, which we are not, she would want to explore the results further, or if my symptoms got worse, but since neither of those things are issues for me right now, she recommended that I do what women who are going through menopause do. Which is, that I take calcium, vitamin D, and do weight bearing exercises to address the issue of bone density. Okay. No problem. I already do the exercising.

When I was at my appointment with her I had also talked to her about my migraines, which I think are hormonal. I'll be seeing a neurologist/headache specialist on the 29th (it's been ten years since I did that last), but in the meantime, I've started on progesterone pills to see if by stopping my ovulation I can decrease the migraines because I've noticed I get them the worst when I ovulate. So I've been on the pills for almost two weeks now. And I thought everything was going fine, but last night I started connecting some dots, and I'm not so sure this is going to work out for me. I think the pills are affecting my depression. Which is just crazy to me. Seriously.

Earlier this week I told Jeremy that something's been happening to my thoughts lately. Out of nowhere these really negative thoughts will pop into my head. And when I say really negative, I mean really negative. It's not like the thoughts are connected to any train of thought I'm having either. They just pop in and out. They don't stick around long, and I don't obsess about them. I know this isn't normal for me. I've also been incredibly irritable. I'm having to do a lot of self-talk to keep myself from being annoyed and lashing out about things that really don't matter at all. Come on Abby. Do you really need to rip Jeremy a new one for eating the last piece of cheese? No. You don't. It's his cheese too. Things like that all the time. I know, it sounds kind of funny. And I can get some perspective and see that these things that are happening are not me.

At first I thought maybe something was happening with my anti-depressants and so I put a call in to Dr. N (who is out of the country until November), asking him if we needed to tweak things a little maybe. I still haven't heard back from him, but after I left the message for him telling him the timeline of these symptoms, I realized that they coincided with when I started taking the progesterone. Last night I hopped on-line (God bless the internet, right?) and looked into the side effects of progesterone. Yes, I did read through them when I started them, which is why there was something in the back of my mind saying they might be the culprit. Sure enough, my symptoms were on the list of possible side effects. I'm not going to make decisions about these things without talking to my doctors, but I'm pretty certain that's what's happening.

Having an explanation is helpful. Absolutely. But last night I felt so discouraged about it all. So am I going to have to choose between the pain of migraines versus depressive thoughts? As I closed up my laptop I sat there on the couch and pictured all the chemicals in my body that all the medications I'm on produce. I've never liked the idea of taking medications. (Not that anyone likes taking medications.) But what can I do? I felt helpless and needy. But maybe I need to shift my paradigm on this. I could be grateful that there are these things that can help me. Were it not for medications I would be dead right now. Plain and simple. Or maybe I should just allow myself to be frustrated and not beat myself up for not being grateful all the time. I don't know . . .

In the meantime I'll cope by, as Dr. N would say, observing the depressive thoughts and recognizing that's what they are, and buy stocking the fridge with extra cheese.

Ugh

June 15, 2010

Things have been a little rocky for me lately health-wise. The last couple of weeks I haven't felt well and this weekend they got worse. Saturday night I was in a lot pain when I went to the bathroom (which was frequently) and then for quite some time afterwards as well. Then all day Sunday too. Monday morning I got up and showered and dressed for work only to break down crying as I approached my front door, realizing that I wasn't going to be able to manage with all the pain I was in. I called in sick yesterday and pestered Dr. G's office till they got me in to see him yesterday afternoon. He said he thinks I need a dilation. I'm guessing he's right. He wrote orders for Dr. T to do a dilation ASAP. He said if she couldn't get me in right away to page the resident working with him and let him know. I'm guessing she'll be able to get me in. She's usually pretty good about that. Because he's now the Dean and only sees patients on Monday afternoons, it will be easier to get in to see her than him. I'll be calling first thing this morning to get it scheduled.

It's disappointing to have this issue creep up on me again. The pain is exhausting.

The resident that was working with Dr. G yesterday introduced himself to me when he came in the room like we had never met. Seriously? He saw me pretty regularly while I was in the hospital too. He's been seeing me for years. I never liked him. Even when I was in the hospital he would stand close to the door like he was afraid of me or something. Yesterday he never let me finish my sentence before he moved on to the next question. Not once. So annoying. It wasn't till I was up on the gurney with him palpating my abdomen that he remembered who I was. "How many times have you been admitted?" he asked. I laughed. "Hmmm . . . eight, maybe ten. I don't know." "Do you have children?" he dared to ask me. "We lost a child when all this happened in the beginning." Then he remembered. "Oh yeah. You saw Dr. I then right? You were on cyclosporine? You look different. That was a tough time." Well, at least he remembered that much. Someone seriously needs to talk to that man about his bedside manner. I don't really put much stock in what the residents say anyway. I wait till I hear things from Dr. G because I've heard him contradict what they've said too many times. But he was just outright annoying.

So anyway. I'm going to work today, pain and all. Grumpy, down mood and all. And I'm hoping to get in for my dilation by the end of the week. Cross your fingers for me. Ugh.

Away from the past

June 7, 2010

"Who's your doctor?" the brunette with the baby in a carry seat sitting next to her asked the heavy set blond woman.

"Dr. C," she answered. "She's really soft spoken. Do you know her?" The brunette squinched her face and shook her head affirmatively.

"You don't like her?" the blond asked. Hmph. I know her. Soft spoken yes, but that woman was not straight with me about my choices when it came to how Harper needed to be delivered. Did I really tell her I was angry at her? I think I did. There on my hospital bed, tears flowing, I told her I was angry because I was told I had more choices than delivering my dead daughter when she had told me I did not. Let it go Abby. Let it go. Forgive. You have to forgive her and consider how things turned out a blessing. This anger is not going to do you any good. Let. It. Go.

In the exam room the nursing student began with her questions. And then she came to the one I knew she would come to. "And how many pregnancies have you had?"

"One," I said.

"And it was a live birth?" she asked looking at her paper.

"No. It was a still birth," I responded and looked at the floor.

"When was the date of your last period?" She moved on. No "I'm sorry." No eye contact. And did we really just refer to the most imporant thing in my life as "it?" I think we did. Both of us. I suppose keeping "it" impersonal is easier. Easier for who? Not for me, that's for sure.

I sat on the gurney in the paper outfit, legs dangling over the edge, and I thought about how other women answer that question. I thought about my friends who have been struggling to get pregnant and have had numerous miscarriages. They know how hard it is to answer that question too. I thought about how I used to feel so good about these appointments. I know that sounds crazy, but there used to be a part of me that walked out of the OB/GYN's office and felt like I was really taking care of myself. Now I dread it. Now I wish I could ignore it all. And so there was a part of me that was relieved when my doctor said she wanted to do tests to see if I was going through premature menopause. Thinking about my fertility is just downright painful sometimes. Yes, I'm only 35, but the nightsweats, change in my cycle, increase frequency in migraines, all those symptoms made her wonder. So we'll see.

The exam was traumatic for me. A rush of memories flooded me. When I was alone in the room again I stood to change my clothes and looked at myself in the mirror. My nose was red and my eyes were full of tears. Maybe if I wait a few minutes I won't look like I've been crying. I walked out of the office and as I waited for the elevator to arrive, I stepped into the hallway and peaked through the doors to the Labor and Delivery floor. Just through those doors is where I last saw Harper. I hesitated. Should I go down there to see the room? Part of me wanted to. But no. Not today. Besides, I doubt they would let me down there anyway. The elevator arrived and I went back to my life. Away from the hospital. Back to the present. Away from the past.

So much in a nod

June 1, 2010

This morning as he was heading out the door, Jeremy gave me a mix CD he had compiled this weekend of songs about and for Harper. I put it in to listen to on my way to work, but I couldn't listen to all of it. Especially the song that he wrote that has her heartbeat in it. I had to skip that one. I remembered a time when she was still with me, when the song was new, I listened to it for hours on repeat.

The man I was sitting next to at a training today asked me if I had kids. "None living," I said. "Oh. You lost a child?" he asked. I told him I had. He said, "Me too." He told me he had a child who only lived for three days. He must have been 60 years old. He went on to say, "Oh and you were probably going along having a good day and I had to ask you that question." I smiled and reassured him that it hadn't ruined my day. It was so nice to hear someone understand how that tiny little question could send one reeling (and had done so in the past to me). "It's just a part of life for me now. Something that will always be with me." He nodded in agreement.

When I think about Harper and the love I have for her, I always end up thinking about Jeremy and the blessing he is in my life. I think about how sharing her has brought us closer to each other. And then I sometimes think about how long we will be together, and, ultimately I end up thinking about what I will do when I lose him one day (meaning when one of us dies). Isn't that horrible? But I can't help it. I get really angry sometimes when I think about how we will spend our lives together as partners only to be separated by death in the end. It just isn't fair and it doesn't make much sense to me. And then this is where I do a little self talk: Okay Abby, let's try the glass is half full approach shall we? How lucky are you that you have him to share your life with now? Enjoy what you have now.

Oh, and tonight I'm tired and not feeling well. Would that I could drift off to sleep and my little girl would come and visit me in my dreams.

Some day . . .

May 27, 2010

Dear Harper,

I've been thinking about you in a new light lately. A friend of mine came over for dinner the other night and I was showing her pictures of you. She said something to me that, while I've heard it before, it really sunk in this time. She said that you gave up your little soul so that I could live. Your daddy said the same thing to me when we found out you had died, but I wasn't ready to hear that then. Part of my inability to hear it was that I felt like my illness was caused by you to begin with, (though I hated myself for feeling that way). But as I was looking at your picture, listening to my friend talk, I realized that you had just as much right to this life as I do. While you were a part of me, you were also your own being. Your dad and I used to talk about raising you with an understanding that you were your own person. You weren't "ours." You were just with us for us to take care of and teach for a couple of decades before you would want to move out on your own. And it's true. You were your own. And so perhaps it was your choice to help ease my pain. I don't know. Perhaps we were both victims of the same random tragedy. I don't know that either. But it did make me see you in a whole new light, thinking about it that way.

I think about you every day. Every day Harper. Yesterday I was walking on the treadmill and I started thinking about you. I was thinking about my uncertainty about what happens to us when we die. I'm okay with the uncertainty because I don't think knowing for sure would change how I live my life, but as I thought about you, it made me want to believe without a doubt that I would see you again. I so want to get to know you. This sort of settled feeling came over me then and I thought, yeah, I'll get to know her some day. One way or another I'll get to know you. There's something really exciting to me about that. I was going to say that you may not have had a fully developed body, but you had a huge spirit, and then I realized that you did have a fully developed body. It was just so tiny is all. Any yes, you had a fully developed spirit. And I believe that one day my spirit will recognize yours. And I will feel such completion and joy when that happens. I don't know the context for sure, but I do have a sense of certainty that it will happen.

I miss you. I get wrapped up in it sometimes, how much I miss you. You know, I like to think of you as a being who made a choice about giving up her life for me instead of being a victim of circumstance. It makes it all seem less tragic. But then I wonder if I believe those things just so I won't be sad, to settle the dissonance in my mind.

I love you sweet girl. Some day . . .
Mom

Lingering fear

May 23, 2010

I napped the afternoon away yesterday, which would have been nice, except for the dream I had that woke me. My recollection of the dream started with me sitting on the edge of a hospital bed, hunched over as the doctor was about to put in an epidural. All of a sudden I realized that I didn't know what was going on. "Wait! What's happening here?" I cried out. I was alone with the doctor. "We have to take it out," she explained. Take what out? What's she talking about? There's nothing in me. There's no baby. What does she want to take out? "Listen, you have no choice here. We have to take it out." I began to sob. "I wish my husband was here," I cried as I hunched over again to let her put the epidural in. I didn't know what was going on. I kept thinking there was nothing there to take out. But just before I woke up I could see her begin to cut me open. And then I woke up.

Olfactory memories

We were busying about the house Saturday morning, preparing to host a retirement party for one of my co-workers that night. I had just gone outside and started setting up chairs and tables when a scent caught my attention. I paused and sniffed around and then went back to what I was doing. But no, that scent. What was that? I walked over to our bedroom window to see if it was open. Was something coming from inside? It was a fresh scent. Clean. I was feeling something churn inside me. Maybe someone nearby was doing their laundry. Suddenly I could not rid the picture from my mind of the two nightgowns I wore when I got home from the hospital. They were the same nightgown, but one was pink and one was yellow. I was flooded with the feeling of being incredibly weak and sick. What the heck was going on? And where was that scent coming from? I went inside to investigate.

"What is that scent?" I asked Jeremy who was scrubbing out the toilet in our bathroom.

"What scent?"

"The one in the guest bathroom. What is that?"

"Oh. That's the Febreeze," he said. I walked into the bathroom and took a deep breath. Yep. That was it. Mystery solved. I went back outside, but I couldn't go back to work. I sat down on the bench by the fountain and closed my eyes. I could see it all. I could see myself in the bathroom after my surgery. I could see myself emptying my ostomy bag. The smell from the bag was horrible. They made special drops you could order from the ostomy supply companies to try to help with the smell. I didn't think they worked so well. We used a lot of Febreeze back then, apparently, though I didn't remember that until that day.

I began to sob. I went back into the bathroom where Jeremy was, my face scrunched up in sobs, "That scent took me back. I'm so thankful I don't have a bag anymore Jeremy. It was horrible. I hated it. I'm so thankful," I told him. He wrapped his arms around me and told me he knew.

Sunday morning we took Django for a walk. "I'm still prepared for you to end up with an ostomy again Abby," he said.

"I know Jeremy. I am too. But for now I'm going to enjoy the time that I don't have one." It's not something we talk about a lot. But it needs to be said from time to time. We need to prepare ourselves mentally for it so it doesn't devastate us if it happens. And it won't devastate us. I just have this feeling though, that that part of my life isn't over. Maybe that's lingering fear talking, I don't know. Maybe it's my body telling my mind something the rest of me doesn't know yet. Maybe the feeling will dwindle with time. But for now, it's where we are.

A very good place to be

May 13, 2010

I've been enjoying the peace in my life lately; driving with the radio off, sitting outside in the hammock in the silence. I'm not afraid of my thoughts. I don't need to distract myself from my pain or sadness. I feel like I'm entering into a new phase in my life. A phase where I do not need to focus on me so much any more. I'm wanting to really enjoy myself. I don't think I've ever been as okay with just relaxing and enjoying things as I am right now. I find myself smiling frequently. Such a good place to be. Such a very good place to be.

2010 Take Steps for Crohn's & Colitis

May 9, 2010

Yesterday evening Jeremy and I, aka "Team Cashman," completed the 2010 Take Steps for Crohn's and Colitis walk. We raised $1025 for the cause and it was with pride that I wore the visor I received as a gift for reaching the $1000 mark. I would guess there were over 100 people there walking. There was "The Swollen Colon" team, and there were the "semi-colons" who of course had a large ";" on their t-shirts. There was a group of people walking in memory of a young woman who lost her life to one of the diseases with her picture on their t-shirts. There were kids and dogs, food, and music. It was quite an event for diseases about which there isn't much public awareness. One of the most funny parts of the experience to me was seeing the signs pointing to the restrooms everywhere with "Crohn's & Colitis Foundation of America" written on them. Every sign we passed made me laugh a little harder. Okay, the game for the kids where they tossed toilet paper rolls into a toilet seat was pretty funny too.

There is nothing like the feeling that comes with doing something active to help make a change for the better in the world. Nothing like it! I said it before, but I'll say it again: Thank you so much to those of you who supported Jeremy and I with your financial contributions to this cause. Thank you!

I don't know how else to describe what I felt walking beside Jeremy other than to say it felt good. Down to the core of my being it felt good.

Gassy Gus

May 7, 2010

The night sweats are making me crazy. It's my understanding that night sweats are one of the symptoms that often accompany UC, so that's what I'm attributing them to, but I think I'm going to talk to my doc about them anyway just to make sure there's nothing else going on. But man, could I just get a little break from them please? I wake up in the night with my PJs wet and cold and I go through this little debate about which action would wake me up more - to get up and change my PJs and sheets (which would mean waking Jeremy up too), or to try to go back to sleep wet and cold? If you've ever had night sweats I'm sure you understand the dilemma. Ugh.

The lack of sleep is exhausting me. When I'm tired, it feels like everything is just a little bit harder for me emotionally too. Little annoyances bother me and even worry me more than they normally would. For instance, now I know this is going to sound funny, but I can't really pass gas anymore. Well, I can, but it takes some effort and is only done when I'm in the restroom. Granted, this does remove me from any public embarrassment, but sometimes I think I would trade that risk for comfort. Gas can be mildly painful you know. Fortunately I'm in the bathroom frequently throughout the day relieving myself on a regular enough basis that the bloating that's associated doesn't get too bad. And while there may not be public embarrassment, I do have to talk myself through the fact that it's okay for me to make noises in the bathroom. For the most part I've been able to get to a place mentally where I'm okay with just letting it rip. Hey, you have to have a sense of humor about this stuff, really, or there would just be no way to deal with it.

Okay, so writing this has actually been helpful for me today. Instead of feeling frustrated and worn out about the whole gas thing, I'm kind of laughing at myself. So for that I'm thankful. Any other colonless people out there who have suggestions or share this issue, I'd love to hear from you!! (Maybe it's not a result of having no colon, maybe it's more about the active UC in my rectum, I don't know. One of those minor things I'll talk to my doc about next time I see him.)

Oh yes! And I am so pleased to tell you that Jeremy and I have raised over $1000 so far for our walk!! I cannot believe it!! What generous folks you all are! Thank you, thank you, thank you!! If you're still interested in donating, don't let the fact that we've reached our goal stop you (smile). You can donate at online.ccfa.org/goto/abbycashman and click on "make a gift." Tomorrow's the walk. I'll let you know how it goes!!

No Colon & Still Rollin'

May 2, 2010

This past week Jeremy called me and told me he heard on the radio about a walk that was taking place in Tucson to help fight Crohn's and Colitis. "Do you wanna look into it? I think we should do it," he offered. So I hopped on-line and found out about the walk and signed us up right away.

On Saturday, May 8th, Jeremy and I will be doing the 2010 Take Steps for Crohn's & Colitis walk here in Tucson. So the funny thing about this, that just dawned on me today, is that the walk will be on the 2 year anniversary of the date I had my colon removed. How appropriate is that?! I can't tell you how excited I am about this. It feels so empowering first of all to be raising money that will help local patient programs and support research, but also to be doing something active, something concrete to fight against this disease that nearly took my life and really, did take the life of my daughter. I told Jeremy I was going to make a No Colon & Still Rollin' t-shirt to wear to the walk and he actually laughed. "That's the first time you've ever laughed at any of my colon jokes!" (And believe me, I've told my share of colon jokes.) Up until now, he has said he couldn't laugh. "I've seen too much to laugh Abby." But I got one laugh out of him. So maybe that means the visions and memories of the hard times are fading for him? I sure hope so.

Already people have donated more money to our walk than I anticipated. I'm deeply, deeply touched by that. If you would like to help in the cause, you can go to online.ccfa.org/goto/abbycashman and make a donation. Every little bit counts! I will for sure post pictures of the walk on my blog, so stay tuned!

(And thank you so much to those who have already given!)