Sunday, November 28, 2010

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?

Tuesday, November 23, 2010

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.

Thursday, November 11, 2010

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.

Wednesday, November 10, 2010

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.

Thursday, November 4, 2010

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.