May 7, 2009
I've been having a tough go of it lately. My hospitalization over the weekend drained me. I need another dilation, which I have scheduled for tomorrow afternoon, thank God. When I need a dilation it's like going to the bathroom through a straw. With that in mind, I'm sure you can picture the straining that I have to do to evacuate (as the doctors say). So there's a lot of pain in going, but there is also pain that results from straining, such as hemorrhoids and hernias. Both of which hurt, an awful lot, both of which I have right now. (TMI? Sorry.)
To top it all off, yesterday I had a migraine. It was a strange one for me. Usually when I get migraines I sit or lay in one position and can't move without throbbing and nausea. Yesterday's migraine, however, was one of the roaming type. For some reason, I could not sit or lay down without the throbbing happening. So I had to walk. The light was killing me. I turned out all the lights in the house, pulled the curtains closed, turned up the AC, placed an ice pack on my head, and walked throughout the house, back and forth from the kitchen to the bedroom. Django was a little confused at first, but eventually found a spot to lay down in the middle of the hallway where he could keep his eye on me no matter where I was going.
I walked in the darkness and the silence, aware of every bit of pain I was in; pelvic pain, hemorrhoid pain, migraine pain, pain from the blown vein in my arm (which I had to have raised as I was walking so it too didn't throb), joint pain from my UC. I couldn't escape any of it. Something very strange happened to me while I was walking in the dark. I felt like it was me and my pain, just the two of us, alone, fighting it out. I was exhausted, but I was patient. I prayed out loud, "Oh God, oh God, oh God." (Sometimes that's as far as the prayer gets, but I think that's all that's needed.) Then I started singing quietly, hymns from my childhood. Hymns that my mom used to sing around the house. Words, melodies, scenes in my mind that comforted me.
I would try to sit down and see if the pain had passed, but it hadn't. As soon as I sat the throbbing started. At one point I felt as if I was walking around carrying a crying baby, trying to calm her down, knowing that I couldn't stop moving or she would start fussing again. It made my heart ache to think about, so I stopped.
Then I stopped walking at the end of the hallway and I stood there. There was the faintest light from the outside night lights shining through onto our living room wall. As I looked at the light my vision started quivering. When I tried to focus on the light it just became more blurry. And in my pain and in my heartache, I thought I could see beating wings in the pulsing of the light. I stood in the comfort of the moment and then started walking again. I thought about how different faiths teach that pain brings you closer to the spirit world. That seemed real to me last night.
And today I'm still in pain. I'm exhausted from the pain. I feel like giving up today. I'm scared. I know that at my appointment on the 13th Dr. T is going to talk about surgery, and I'm scared for that. I just don't know how much more I can handle. And tomorrow is the year anniversary of when I had my colon removed. The ugly, sick thing that it was. The word "colon" is one of the most emotionally charged words there could ever be for me.
And then there's Mother's Day coming up. And I'm sick of my sadness affecting people around me. I want Mother's Day to be the wonderfully happy day that it is! I don't want my family to be sad for me on Mother's Day. I want to be in denial this Mother's Day. I want to pretend like I'm not a childless mother. I want to think about my wonderful mother, not about my daughter. I can't handle the pain of it. I think I'm actually in denial about a lot of my situation right now. I just don't want to deal with it. I don't want to talk about it. I'm sick of it.
So anyway. Tomorrow I get to go get poked and prodded again. I hate it. I'm so tired of it. I sobbed tonight telling Jeremy, "When do I get to do what I want with my life?" I feel so out of control. I hate it. Have I mentioned that?
Oh God, oh God, oh God.
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Hi Abby,
ReplyDeleteI suffer from occasional migraines on top of everything else too. The worse bit is that the meds I have that I know "fix" my migraines (high doses of Naproxen) can contribute to pouchitis. I just can't win! I do have some narcotics for when I'm in lots of pain, but I really don't like to take them as they make me feel so nauseous.
I totally get where you are coming from. I had a hospital visit in January, the very same day I was scheduled to go back to work after recovering from my jpouch surgery. It was so humiliating to have to call in sick to work and it was so stressful to be back in the hospital (for me and my husband). I was convinced it was a bowel obstruction and that something horrible was happening as it usually is the case. Turns out it was probably just a gastrovirus, but I needed a lot of fluid replacement. I can't even get sick like "regular" people anymore. I HATE being the ER, the waiting, the smells, the disruption to my life, having to call my parents in the middle of the night in a panic because I have to go back to the ER again. When I came out of that last ER trip, I actually asked my doctor for some anxiety meds -- I was so stressed out about it all that I just couldn't calm down. I hate taking meds, and I've actually never had to take the few pills she gave me, but just having them on hand helps in case any more ER trips are in my future.
I get what you mean about the pain and not being able to move on and look forward. I'm tired of having pouchitis and having the docs admit that they really don't know what to do. I'm not ready to throw in the towel for a permanent ostomy yet, but it tempting just to feel better again. Then again, I never know if I'll be trading one set of problems for another - I had my ostomy for almost a year the last time, and while you start out hating it, you do end up just accepting and managing it - but it is possible that it will come with it its own problems.
I'm finding it difficult in that everyone seems to think that I'm OK now that all my surgeries are done and I "look" healthy. Everyone keeps asking when we are going to have another baby (um, not until I don't have to take antibiotics and can be healthy for at least 3 months in a row and actually have enough energy to deal with my 3-year old!) Pouchitis and chronic feelings of unwell are hard to explain - sometimes I explain that it is like having a recurring flu every couple of weeks. That usually suprises them, but puts it in perspective. People don't realize that it is something I have to take into account with every decision I make - can I work overtime? can I go away on the weekend? can I plan a vacation? how close to a hospital will we be?
I don't have faith in god like you do, so I'm glad you have some comfort in that. I get my strength from nature, family, friends . . . I attended a Crohn's and Colitis volunteer event held in a major city up here in Canada this weekend and it was actually very inspiring and uplifting to be in a room full of folks who were all very positive and living with the disease, using our power for good by volunteering and giving back to raise money to find the cure.
Anyway, sorry I'm rambling . . . I didn't set out to write a book! Just wanted to let you know that you aren't alone and you are in my thoughts.
Kristen
Hey Abby,
ReplyDeleteHave you heard of Ann Weems Psalms of Lament? She wrote 20 Psalms I believe after the death of her son. It's one of the most poignant books that I have found that conveys deep sorrow and holds that grief place... thought I'd mention it. Your work here reminds me of it; real, authentic, and hard. You're in my thoughts.
Davin
Kristen,
ReplyDeleteThank you so much for your response. I can't tell you how much it means to me to know that there are other people who have experiences similar to mine. It makes me feel not so alone. I'm glad we can do that for each other. That's what this journey is all about, isn't it?
Peace,
Abby