August 8, 2009
"Do you have children?" I saw Jeremy look at me, deferring to me to handle this. There was a pause. "No," I said. And we moved on in conversation. Actually, I purposefully directed the conversation back at her. This was a birthday party after all, a little girl's birthday party. She didn't need to know about Harper. And I guess my instincts served me well. My stock answer to that question is, "None living." But then that always leads to a sad look in the other person's eyes. Maybe that's the end of the conversation, maybe they ask more, but last night I didn't want to deal with that. Still I'm left to deal with the tiniest bit of feeling that I betrayed my daughter - I didn't acknowledge her. Or that I'm denying myself a title that I fought hard for and don't get to wear: mother.
We were the childless couple last night. Did we stick out like a sore thumb, or was it just me? I don't know. I enjoyed myself though. I really did. I loved being around all that family, all those little ones, laughing, playing, pretending. I held my share of babies, kissed enough soft precious baby-scented cheeks and tops of heads. Jeremy and I would engage in our separate conversations and then drift back to each other briefly. He would put his hand on my back, I would rest my head on his shoulder. Jeremy made a little friend, 13 months old who kept coming to him with his arms up to be held by him. It made me laugh.
I didn't cry. Maybe I carried a little sadness with me, but I think I did well. I come away from situations like that not being able to gage my interactions with people. I have this fear that I'm going to be the wet blanket - that I exude this sorrow or something that people won't want to be around. Do others see me that way? I just want to be myself, authentic, but do I over-compensate then? I really don't know. It's all so hard. But it's life. It's what we have to navigate, Jeremy and I together. And as the waves push us around a little, we reach out and find each other, steady each other, and then go back out to try to swim again.
Saturday, August 8, 2009
Wednesday, August 5, 2009
As stable as can be?
August 5, 2009
Have you noticed a change in my "voice" the last little bit? I certainly have. I think I was unfairly blaming it on August, but truly, I believe there is another culprit at play here. My good old friend depression. Under the direction and care of my psychiatrist, Dr. N, we had agreed I was in a good enough place to stop taking my anti-depressants (because they do have side effects that aren't so fun, but are the lesser of two evils sometimes). It took me a while to ween myself off them as I get physically ill if I stop them cold turkey. I finished my last dose just a couple of days after we returned from San Francisco. I swear to you, it's like clockwork too. Within two weeks my crying episodes have begun, just as within two weeks of beginning the medication, my crying episodes ended.
I do consider myself a tender-hearted person (smile), but not to this extent. I totally understand where the saying, "at the drop of a hat" came from, because when I'm in this state, I can feel so badly for the smallest little things that they bring me to tears: "Oh, you dropped your hat? [tears begin to trickle] I'm so sorry [sob]." When the little things affect me that way, imagine how August and I get along. Not so well.
So before I drive my husband crazy with searching for life-altering solutions to my sadness, I'm going to give the meds another try. This time I'm not going to wait for the thoughts that the only thing that will cure it all is to end my life. At least I've learned that lesson (hopefully)! You just watch too. Two weeks from today, I'd place money on the fact that I'm back in a positive, stable place emotionally (or at least as stable as I can be in my circumstances - I guess I should qualify it with that, right?).
Have you noticed a change in my "voice" the last little bit? I certainly have. I think I was unfairly blaming it on August, but truly, I believe there is another culprit at play here. My good old friend depression. Under the direction and care of my psychiatrist, Dr. N, we had agreed I was in a good enough place to stop taking my anti-depressants (because they do have side effects that aren't so fun, but are the lesser of two evils sometimes). It took me a while to ween myself off them as I get physically ill if I stop them cold turkey. I finished my last dose just a couple of days after we returned from San Francisco. I swear to you, it's like clockwork too. Within two weeks my crying episodes have begun, just as within two weeks of beginning the medication, my crying episodes ended.
I do consider myself a tender-hearted person (smile), but not to this extent. I totally understand where the saying, "at the drop of a hat" came from, because when I'm in this state, I can feel so badly for the smallest little things that they bring me to tears: "Oh, you dropped your hat? [tears begin to trickle] I'm so sorry [sob]." When the little things affect me that way, imagine how August and I get along. Not so well.
So before I drive my husband crazy with searching for life-altering solutions to my sadness, I'm going to give the meds another try. This time I'm not going to wait for the thoughts that the only thing that will cure it all is to end my life. At least I've learned that lesson (hopefully)! You just watch too. Two weeks from today, I'd place money on the fact that I'm back in a positive, stable place emotionally (or at least as stable as I can be in my circumstances - I guess I should qualify it with that, right?).
Tuesday, August 4, 2009
My bitter enemy
August 4, 2009
I talked with my brother last night on the phone. Hmm . . . "talked" isn't exactly an accurate description of what transpired. I did a lot of crying. He did a lot of listening. I told him I still feel so alone in all of this. I think the need to talk about it all is growing from that place of feeling alone.
On my drive home from work yesterday I was suddenly back at NW Hospital, there in the bathroom attached to my room. I could see the color of the floor and all the tiny little flecks of pattern. I could see the one tiny red fleck that was in the shape of a heart. I focused so much of my attention on that tiny little fleck when I was in that bathroom. It was all I could do. Thinking about it now, I can physically feel it all again. I can feel the weight of the fluid beginning to collect in my body. I can feel the pain in my skin as it stretched. I can feel Harper moving inside of me, fluttering every now and then, reminding me why I was fighting so hard. I can see myself lifting my legs out of the bed with urgency, reaching for the IV pole to drag it along with me, barely making it to the bathroom. I can feel my stomach cramping up as I pushed, the gooseflesh covering my body. I can feel the stool passing through me. I can see the blood in the collection hats in the toilet. I can see myself writing the time on a scrap piece of paper where the list of times were collecting and then climbing back into the bed, pulling my legs up, closing my eyes and trying to sleep, my body exhausted, but knowing that in another 20 minutes, I'd be doing the same thing again.
And that was it. That was all my mind thought about. That was all I could think about. My body had nothing. Everything was going through me, right through me. There was no energy to think about anything else. Except the fear. But even the fear was something I had resigned myself to. I thought I would be there for months, if I ever left. It was March. I wasn't due till August. I tried to imagine her surviving it all. I had visions of her as a little girl - it was what I held on to desperately. I was fighting. Do you know how hard I fought?! No. Most people don't know. I fought so hard for my little girl. I don't know. Maybe it doesn't sound so hard, laying in bed and then going to the bathroom. Big deal, right? I just don't know if you can imagine how hard it was though. Have you ever had the flu? Where you run to the bathroom? Imagine doing that 17 times a day. Imagine blood coming out when you do it. Imagine a baby growing inside of you.
And now. Now I have to let go of those visions of her that I held so tight to. Those visions that got me through. The little girl with the loose brown curls in a karate uniform running around the house with her bare little feet, showing off for mommy and daddy. She was fully flesh in my mind - flesh and spirit and laughter and personality. I have to let go of what kept me going. How do I do that? She was why I held on. Yes, as time has passed my grip has loosened, but when your starting place is a place of holding on for dear life, it's hard to let go.
Oh August. Maybe some day we'll be friends, but today you are my bitter enemy.
I talked with my brother last night on the phone. Hmm . . . "talked" isn't exactly an accurate description of what transpired. I did a lot of crying. He did a lot of listening. I told him I still feel so alone in all of this. I think the need to talk about it all is growing from that place of feeling alone.
On my drive home from work yesterday I was suddenly back at NW Hospital, there in the bathroom attached to my room. I could see the color of the floor and all the tiny little flecks of pattern. I could see the one tiny red fleck that was in the shape of a heart. I focused so much of my attention on that tiny little fleck when I was in that bathroom. It was all I could do. Thinking about it now, I can physically feel it all again. I can feel the weight of the fluid beginning to collect in my body. I can feel the pain in my skin as it stretched. I can feel Harper moving inside of me, fluttering every now and then, reminding me why I was fighting so hard. I can see myself lifting my legs out of the bed with urgency, reaching for the IV pole to drag it along with me, barely making it to the bathroom. I can feel my stomach cramping up as I pushed, the gooseflesh covering my body. I can feel the stool passing through me. I can see the blood in the collection hats in the toilet. I can see myself writing the time on a scrap piece of paper where the list of times were collecting and then climbing back into the bed, pulling my legs up, closing my eyes and trying to sleep, my body exhausted, but knowing that in another 20 minutes, I'd be doing the same thing again.
And that was it. That was all my mind thought about. That was all I could think about. My body had nothing. Everything was going through me, right through me. There was no energy to think about anything else. Except the fear. But even the fear was something I had resigned myself to. I thought I would be there for months, if I ever left. It was March. I wasn't due till August. I tried to imagine her surviving it all. I had visions of her as a little girl - it was what I held on to desperately. I was fighting. Do you know how hard I fought?! No. Most people don't know. I fought so hard for my little girl. I don't know. Maybe it doesn't sound so hard, laying in bed and then going to the bathroom. Big deal, right? I just don't know if you can imagine how hard it was though. Have you ever had the flu? Where you run to the bathroom? Imagine doing that 17 times a day. Imagine blood coming out when you do it. Imagine a baby growing inside of you.
And now. Now I have to let go of those visions of her that I held so tight to. Those visions that got me through. The little girl with the loose brown curls in a karate uniform running around the house with her bare little feet, showing off for mommy and daddy. She was fully flesh in my mind - flesh and spirit and laughter and personality. I have to let go of what kept me going. How do I do that? She was why I held on. Yes, as time has passed my grip has loosened, but when your starting place is a place of holding on for dear life, it's hard to let go.
Oh August. Maybe some day we'll be friends, but today you are my bitter enemy.
Sunday, August 2, 2009
Carpe-freakin'-Diem
August 2, 2009
It hit me yesterday that it's August. And August has been heavy on my mind ever since, this extra weight inside my head, like lead.
At 2:15 a.m. this morning I got a phone call. It was Jeremy. He had just finished playing at the Red Room with the Low Ones and couldn't start the truck. He thought the battery had died. "No problem sweetie, I'm on my way." I threw on some clothes, searched the usual suspect places for jumper cables which I could not find (because we don't own them - what?!), grabbed baking soda and some water at Jeremy's instruction and headed out. I never thought I'd thank God for Walmart, but at 2:30 in the morning I was doing so. I ran in and bought some jumper cables and got downtown all within about 25 minutes. It was the battery and all is well now.
This morning we went out to run some more errands, one of which was to buy a new truck battery. I had Jeremy's Adam Again CD in the player. A line had caught my attention the day before as he had it playing. But different lines were catching my attention now: "What can you say, the impossible happens? What can you sell for? What can you live without?" Oh and the cello in the song. The cello will forever be an instrument that strikes the very core of my being when I hear it. It's August. The tears started pouring.
I put my face in my hands and let go. "I'm just so sad Jeremy. It's August." I think it took him a moment to follow my train of thought, after all this had just come out nowhere. We were just running errands for goodness sakes. "We should be getting ready for her first birthday," more sobs. "I would make the invitations myself. And the party favors, I would make the party favors myself too. And I'd take pictures of her eating her first birthday cake. I don't want to be sad about this. I want to be over her. Why can't I be over Harper?"
"Oh Abby, we won't ever be over her. And there's more than sadness there too. It's not just sadness," he reminded me. And it's not. But today it is. And I cried some more. August 17th. That was my due date.
It's not out of my system. I'm starting to feel a little troubled about that too. Should it be? Should I be better than I am now? I have what they call complicated grief. There were so many losses, one on top of the next, piling up like bad garbage. Wish I could just toss it all into the can and be done with it.
Getting up in the middle of the night to help Jeremy brought up more stuff too. This time I was on the other end, and I was so glad. I was so happy to be able to go help him when he needed me. But we talked today about the other phone calls in the middle of the night. There was one night in particular that I was scared and alone in the hospital. I told myself I was having a panic attack, I just needed to ride it out, but I couldn't. I still had Harper with me then. They were pumping me full of all kinds of drugs, but if there were ones I could avoid taking, I still did because of her. Seems so silly to me now. They offered me Ativan, but I said no at first. I was so scared. I thought I was going to die. I couldn't lay down. I couldn't breath when I laid down. I was going to jump out of my skin.
"What can I do to help you?" the sweet nurse asked as she sat next to me, rubbing my back. I was sobbing.
"I need my husband, but I don't want to call him. He needs his rest." I could just ride it out. I could. Surely I would get so tired that I would have to fall asleep. But when the nurse left my room after sitting with me for nearly an hour, I couldn't stand it. I was so scared. Finally I agreed to take the Ativan. But the Ativan didn't kick in right away, so I called Jeremy. I woke him from a dead sleep. The nights that he went home to sleep, he slept with the phone on the pillow, which explains that why to this day when I get up to go to the bathroom in the night he jumps up saying, "What's wrong? Are you okay?"
He came to be with me that night. And bless his heart, by the time he got there the medication had kicked in and I was loopy and groggy and hardly knew he was there. He told me there were other times the nurses called him in the night too. I didn't know that. I didn't know.
As I sit here writing this, I want to go back to that time. It was a living hell and I'm crazy for saying it, I know, but I do. I want to go back to that time because then I could feel Harper moving inside of me. She was still alive.
Boy, do I have issues? There's something in me lately that feels like I need to keep talking about this. I need to keep telling people what happened. I wonder if it's time to join a support group? I need to purge. There's still more in there. Is this normal? Don't get the wrong idea either okay? Because when I first started blogging, these thoughts and feelings were shackled to me everywhere I went. They aren't any more. I fly free much of the time. But this is my way of purging. So you get this distorted view of who I am. Oh Abby, it is what it is, let go.
Okay. So I need to get myself out of this funk. I can do this. I can. I'm going to start by changing the music I'm listening to as I write this. Certain music just allows me to wallow in the gunk. So let's listen to Dig: "The earth is hard, the treasure fine." "There was a time I might have surrendered, but not now." And yes, the words are better, but how about changing the whole mood Abby? Yes. That's what I need.
So here's my little pep talk to get me out of the funk:
This is the beauty of life Abby. This is it. The pain, the heartache, all of it. It has given your life so much abundance. And you know you can feel that there's something amazing right around the corner. Every day you wake up ready for it. It's going to happen. And you are strong! You are strong and can endure! Look at the love around you. What more could you ask for? Nothing. There is nothing more to this life than love. That's it! And you've got it! You are a blessed and lucky woman. Don't ever believe otherwise.
And colon-schmolin! Who needs a colon anyway? You don't! Look at you! You're running, you're doing yoga, (you're eating granola) - you are living the life you want to live. What a gift?! You are alive for crying out loud! ALIVE! Carpe-freakin'-Diem! Okay?!
It hit me yesterday that it's August. And August has been heavy on my mind ever since, this extra weight inside my head, like lead.
At 2:15 a.m. this morning I got a phone call. It was Jeremy. He had just finished playing at the Red Room with the Low Ones and couldn't start the truck. He thought the battery had died. "No problem sweetie, I'm on my way." I threw on some clothes, searched the usual suspect places for jumper cables which I could not find (because we don't own them - what?!), grabbed baking soda and some water at Jeremy's instruction and headed out. I never thought I'd thank God for Walmart, but at 2:30 in the morning I was doing so. I ran in and bought some jumper cables and got downtown all within about 25 minutes. It was the battery and all is well now.
This morning we went out to run some more errands, one of which was to buy a new truck battery. I had Jeremy's Adam Again CD in the player. A line had caught my attention the day before as he had it playing. But different lines were catching my attention now: "What can you say, the impossible happens? What can you sell for? What can you live without?" Oh and the cello in the song. The cello will forever be an instrument that strikes the very core of my being when I hear it. It's August. The tears started pouring.
I put my face in my hands and let go. "I'm just so sad Jeremy. It's August." I think it took him a moment to follow my train of thought, after all this had just come out nowhere. We were just running errands for goodness sakes. "We should be getting ready for her first birthday," more sobs. "I would make the invitations myself. And the party favors, I would make the party favors myself too. And I'd take pictures of her eating her first birthday cake. I don't want to be sad about this. I want to be over her. Why can't I be over Harper?"
"Oh Abby, we won't ever be over her. And there's more than sadness there too. It's not just sadness," he reminded me. And it's not. But today it is. And I cried some more. August 17th. That was my due date.
It's not out of my system. I'm starting to feel a little troubled about that too. Should it be? Should I be better than I am now? I have what they call complicated grief. There were so many losses, one on top of the next, piling up like bad garbage. Wish I could just toss it all into the can and be done with it.
Getting up in the middle of the night to help Jeremy brought up more stuff too. This time I was on the other end, and I was so glad. I was so happy to be able to go help him when he needed me. But we talked today about the other phone calls in the middle of the night. There was one night in particular that I was scared and alone in the hospital. I told myself I was having a panic attack, I just needed to ride it out, but I couldn't. I still had Harper with me then. They were pumping me full of all kinds of drugs, but if there were ones I could avoid taking, I still did because of her. Seems so silly to me now. They offered me Ativan, but I said no at first. I was so scared. I thought I was going to die. I couldn't lay down. I couldn't breath when I laid down. I was going to jump out of my skin.
"What can I do to help you?" the sweet nurse asked as she sat next to me, rubbing my back. I was sobbing.
"I need my husband, but I don't want to call him. He needs his rest." I could just ride it out. I could. Surely I would get so tired that I would have to fall asleep. But when the nurse left my room after sitting with me for nearly an hour, I couldn't stand it. I was so scared. Finally I agreed to take the Ativan. But the Ativan didn't kick in right away, so I called Jeremy. I woke him from a dead sleep. The nights that he went home to sleep, he slept with the phone on the pillow, which explains that why to this day when I get up to go to the bathroom in the night he jumps up saying, "What's wrong? Are you okay?"
He came to be with me that night. And bless his heart, by the time he got there the medication had kicked in and I was loopy and groggy and hardly knew he was there. He told me there were other times the nurses called him in the night too. I didn't know that. I didn't know.
As I sit here writing this, I want to go back to that time. It was a living hell and I'm crazy for saying it, I know, but I do. I want to go back to that time because then I could feel Harper moving inside of me. She was still alive.
Boy, do I have issues? There's something in me lately that feels like I need to keep talking about this. I need to keep telling people what happened. I wonder if it's time to join a support group? I need to purge. There's still more in there. Is this normal? Don't get the wrong idea either okay? Because when I first started blogging, these thoughts and feelings were shackled to me everywhere I went. They aren't any more. I fly free much of the time. But this is my way of purging. So you get this distorted view of who I am. Oh Abby, it is what it is, let go.
Okay. So I need to get myself out of this funk. I can do this. I can. I'm going to start by changing the music I'm listening to as I write this. Certain music just allows me to wallow in the gunk. So let's listen to Dig: "The earth is hard, the treasure fine." "There was a time I might have surrendered, but not now." And yes, the words are better, but how about changing the whole mood Abby? Yes. That's what I need.
So here's my little pep talk to get me out of the funk:
This is the beauty of life Abby. This is it. The pain, the heartache, all of it. It has given your life so much abundance. And you know you can feel that there's something amazing right around the corner. Every day you wake up ready for it. It's going to happen. And you are strong! You are strong and can endure! Look at the love around you. What more could you ask for? Nothing. There is nothing more to this life than love. That's it! And you've got it! You are a blessed and lucky woman. Don't ever believe otherwise.
And colon-schmolin! Who needs a colon anyway? You don't! Look at you! You're running, you're doing yoga, (you're eating granola) - you are living the life you want to live. What a gift?! You are alive for crying out loud! ALIVE! Carpe-freakin'-Diem! Okay?!
Saturday, August 1, 2009
You've come a long way baby
August 1, 2009
Yesterday I had an ophthalmology appointment in the morning. When I was in the hospital last year some funky things started happening to my vision as a result of either the high doses of IV steroids I was on, or the cyclosporine treatment I was on, or all the straining I was doing on the toilet. I'm really not sure which. But beginning during my hospitalization I saw large brown spots out of my right eye, and any light made my vision pulse. It was strange. An ophthalmologist saw me in the hospital, and then I followed up with some tests and visited with an ophthalmologist after being discharged from the hospital too, but honestly, I didn't understand what it was all about. I didn't try to understand either. I just did what I was told. My mind was so hazy during that time. I was easily confused and couldn't verbalize very well (hard to believe, I know). There were so many times that when doctors were around I would just look to Jeremy with this helpless look on my face, hoping that he could speak for me. And he always did. (God I'm so thankful for him.)
So yesterday I was in a better state of mind. And I learned a lot. Apparently some test results from last year showed that I am at high risk for glaucoma. (Until yesterday, the only thing I knew about glaucoma was that it had to do with your eyes.) I have to go yearly to be screened and tested as a result. Apparently with glaucoma, once the damage is done there's not much you can do. (But really, I'm just beginning to learn about this.) I have to keep reminding myself that I'm only at high risk - I don't have the disease right now.
I asked Dr. U what caused this? She told me that Hispanics, African Americans, and people with a family history of glaucoma are at the highest risk for the disease. To my knowledge, I have no known family history of it. She said there was some asymmetry in my test results that made her more concerned than she might have otherwise been. Anyway . . .
She dilated my eyes (Jeremy and I joked that I was having a different type of dilation than I normally had on Fridays!) and checked me out. We scheduled a time for me to come in for the annual field vision study, and Jeremy and I left. But last night I started doing some research. What I found was that glaucoma can be linked to being on long-term steroids - which I was on last year. I knew steroids could cause vision problems, but I didn't know it was certain types of glaucoma.
So all of this is to say, I felt overwhelmed last night. It feels like this is yet another reminder of all that I have been through - and it will be a continual reminder. And yet another reason to be afraid. What if I lose my vision because of this? I just can't go there though. I can't be afraid of that. Jeremy said this morning, "Remember Abby, you don't have glaucoma. You're just at high risk for it." That's right. I don't have it. Let go Abby. You can't control this. Man, it sucks not to be able to control things, doesn't it? (Smile)
I asked Dr. U if ulcerative colitis can affect vision in and of itself (not just the medication side-effects). Yes. It can. It can cause inflammation in the eyes. I already have some inflammation in my joints as a result of UC. Ugh. But again I tell myself: Let go Abby. Let go.
Part of my frustration in all of this is that I didn't understand what was happening when I was sick. I didn't understand that this caused that. It just felt like all these things started happening to me. I felt so helpless. I kid you not, I did not understand that ulcerative colitis was a disease until after my colon had been removed (almost two months after my diagnosis). Dr. I came in my room after my surgery and said, "Ulcerative colitis is a lifelong disease." What?! All along I had been thinking that this was some illness, like the flu that if we could just find the right treatment it would be cured. I didn't understand why they were sending me home still so sick, having diarrhea and on high doses of steroids. I didn't understand why they gave me a blood transfusion thirty minutes before they discharged me. How could they do that and let me go? Didn't that mean I wasn't cured?
And it's not like my doctors didn't take plenty of time every day to answer the questions my family and I had. They did. And it's not like Dr. U didn't answer my questions yesterday. She did. And it's not like I'm a stupid person either. I'm not. But I think doctors are so used to talking about the conditions that they deal with that they forget that us normal folk don't have the same knowledge base as they do.
Looking back, I wish someone had sat down with me and started from the very beginning, talking to me like I was five years old, explaining every part of ulcerative colitis to me. Oh yeah, and the whole ostomy thing! The nurses brought in samples of ostomy supplies to show me before the surgery, but I really had no idea what I was getting into. No one told me what a stoma was going into the surgery. The surgeons talked about a bag that I would have. I just didn't get it. And I really don't want to blame the medical professionals here either. I fully admit that I was in a very fragile state mentally and emotionally. The medications I was on left me confused. Maybe they did explain things to me, I just didn't get it. And yes, none of this would have changed the outcome of my situation. BUT, it might have lessened my feelings of helplessness. Knowledge is power, is it not?
Okay, so I'm going to try to let go of all of this today. Writing helps. It really does. And on the positive side, this morning Jeremy said to me, "Do you know what the highlight of my day was yesterday?" Hm. I thought through the things we did. I had no idea. "It was hearing you tell the nurse, 'No I'm off that medication now. And I'm off that medication now. And I'm off that medication now.' It warmed my heart. You've come a long way." Ah shucks. I really have. I'm on two prescribed daily medications right now. That's it. Woo-hoooo!
Yesterday I had an ophthalmology appointment in the morning. When I was in the hospital last year some funky things started happening to my vision as a result of either the high doses of IV steroids I was on, or the cyclosporine treatment I was on, or all the straining I was doing on the toilet. I'm really not sure which. But beginning during my hospitalization I saw large brown spots out of my right eye, and any light made my vision pulse. It was strange. An ophthalmologist saw me in the hospital, and then I followed up with some tests and visited with an ophthalmologist after being discharged from the hospital too, but honestly, I didn't understand what it was all about. I didn't try to understand either. I just did what I was told. My mind was so hazy during that time. I was easily confused and couldn't verbalize very well (hard to believe, I know). There were so many times that when doctors were around I would just look to Jeremy with this helpless look on my face, hoping that he could speak for me. And he always did. (God I'm so thankful for him.)
So yesterday I was in a better state of mind. And I learned a lot. Apparently some test results from last year showed that I am at high risk for glaucoma. (Until yesterday, the only thing I knew about glaucoma was that it had to do with your eyes.) I have to go yearly to be screened and tested as a result. Apparently with glaucoma, once the damage is done there's not much you can do. (But really, I'm just beginning to learn about this.) I have to keep reminding myself that I'm only at high risk - I don't have the disease right now.
I asked Dr. U what caused this? She told me that Hispanics, African Americans, and people with a family history of glaucoma are at the highest risk for the disease. To my knowledge, I have no known family history of it. She said there was some asymmetry in my test results that made her more concerned than she might have otherwise been. Anyway . . .
She dilated my eyes (Jeremy and I joked that I was having a different type of dilation than I normally had on Fridays!) and checked me out. We scheduled a time for me to come in for the annual field vision study, and Jeremy and I left. But last night I started doing some research. What I found was that glaucoma can be linked to being on long-term steroids - which I was on last year. I knew steroids could cause vision problems, but I didn't know it was certain types of glaucoma.
So all of this is to say, I felt overwhelmed last night. It feels like this is yet another reminder of all that I have been through - and it will be a continual reminder. And yet another reason to be afraid. What if I lose my vision because of this? I just can't go there though. I can't be afraid of that. Jeremy said this morning, "Remember Abby, you don't have glaucoma. You're just at high risk for it." That's right. I don't have it. Let go Abby. You can't control this. Man, it sucks not to be able to control things, doesn't it? (Smile)
I asked Dr. U if ulcerative colitis can affect vision in and of itself (not just the medication side-effects). Yes. It can. It can cause inflammation in the eyes. I already have some inflammation in my joints as a result of UC. Ugh. But again I tell myself: Let go Abby. Let go.
Part of my frustration in all of this is that I didn't understand what was happening when I was sick. I didn't understand that this caused that. It just felt like all these things started happening to me. I felt so helpless. I kid you not, I did not understand that ulcerative colitis was a disease until after my colon had been removed (almost two months after my diagnosis). Dr. I came in my room after my surgery and said, "Ulcerative colitis is a lifelong disease." What?! All along I had been thinking that this was some illness, like the flu that if we could just find the right treatment it would be cured. I didn't understand why they were sending me home still so sick, having diarrhea and on high doses of steroids. I didn't understand why they gave me a blood transfusion thirty minutes before they discharged me. How could they do that and let me go? Didn't that mean I wasn't cured?
And it's not like my doctors didn't take plenty of time every day to answer the questions my family and I had. They did. And it's not like Dr. U didn't answer my questions yesterday. She did. And it's not like I'm a stupid person either. I'm not. But I think doctors are so used to talking about the conditions that they deal with that they forget that us normal folk don't have the same knowledge base as they do.
Looking back, I wish someone had sat down with me and started from the very beginning, talking to me like I was five years old, explaining every part of ulcerative colitis to me. Oh yeah, and the whole ostomy thing! The nurses brought in samples of ostomy supplies to show me before the surgery, but I really had no idea what I was getting into. No one told me what a stoma was going into the surgery. The surgeons talked about a bag that I would have. I just didn't get it. And I really don't want to blame the medical professionals here either. I fully admit that I was in a very fragile state mentally and emotionally. The medications I was on left me confused. Maybe they did explain things to me, I just didn't get it. And yes, none of this would have changed the outcome of my situation. BUT, it might have lessened my feelings of helplessness. Knowledge is power, is it not?
Okay, so I'm going to try to let go of all of this today. Writing helps. It really does. And on the positive side, this morning Jeremy said to me, "Do you know what the highlight of my day was yesterday?" Hm. I thought through the things we did. I had no idea. "It was hearing you tell the nurse, 'No I'm off that medication now. And I'm off that medication now. And I'm off that medication now.' It warmed my heart. You've come a long way." Ah shucks. I really have. I'm on two prescribed daily medications right now. That's it. Woo-hoooo!
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