Here is the health update I sent out:
Hello all,
Well, I had all my doctor appointments today so I'll give you the update.
First, I had a CT scan. After that was done Mom and I ate a little breakfast in the cafeteria (I had to be fasting for the scan) before heading up to see Dr. Rademacher, my infectious disease doctor. He informed us that the abscess had hardly shrunk at all, which was disappointing since I'd just endured one month of constant antibiotics through my PICC line. His suggestion was to try stopping the antibiotics and waiting a couple weeks before doing another CT scan. Granted, if I got sick from the infection in the abscess, we'd move the CT scan up to a closer date. He said if the abscess didn't grow at all during that time then we could probably just leave it alone. If it got bigger or I got sick we'd have to probably do the surgery to remove it. In case you've forgotten this surgery would have to happen in Omaha under the watchful eyes of my liver doctors and I would have to have plenty of clotting factors ahead of time since my blood doesn't clot very well right now because of my liver disease. We went with Dr. Rademacher's decision and made an appointment for two weeks in the future.
I've been having more pain in my lower abdomen and more cramping in my stomach (bad enough that it reaches to my back). This is the pain that, if it gets bad enough, sends me to the ER. These are what I call my "episodes". Originally this pain was diagnosed as being from the ovarian cysts and the endometriosis. My episodes post-surgery for the cysts aren't as bad, but I've still had a couple that have sent me to the ER. The CT scan today showed I have more cysts on my ovaries, though they aren't infected. Perhaps this is the cause of some of my pain? We'll talk to my gynecologist on the 8th about the new cysts (which may be harmless and just there because of ovulation) and about maybe finally starting the shots that will shut down my ovaries (the drug fools my body into thinking it has menopause!).
Next I saw my primary care physician, Dr. Pierce, about the horrible restless leg syndrome I've been experiencing. It's gotten very severe and something more drastic needed to be done. Dr. Pierce gave me a sample of a drug called Requip that is made specifically for restless leg. I take it once a day. Since I'm on so many medications, it's hard to tell when there will be an interaction so basically we have our fingers crossed here that I won't have a reaction to this drug. I'll try it for 2 weeks (stopping if I notice any bad reactions) and then see Dr. Pierce again to tell him how it went and procure a prescription if it seems to be working.
I'll let you all know how things go. Hopefully we're on the road to some more information here!
Thank you all for your prayers, thoughts and kind emails. They make me so happy. I'm lucky to be surrounded by so many wonderful people.
Love,
Becca
P.S. Since I'm no longer recieving the IV antibiotics my PICC line was pulled today. Bye bye PICC line! I'll miss the convienence of not having lots of pokes, but I won't miss carrying around a pump all the time, having the tubing catch on things and having to keep the line dry while bathing.
Wednesday, September 3, 2008
Tuesday, September 2, 2008
Liver Transplant Anecdotes, Part 2
Remember this post? Well, this is me, finally picking it up again.
And do you know what? I totally left out the best 1st transplant anecdote. Here it is:
We went to radiology a lot, as you can imagine. There was a desk there where a nurse/secretary worked checking people in, dispensing contrast, etc. During all the waits she and my mom had gotten to know each other a little.
Sometime after my first transplant she apparently had a very revealing conversation with my mother. I didn't find out about it until later. First of all, you have to know that one, my first liver was only half a liver and two, you are never told who the donor is unless that person's family chooses to come forward. You can however, send them a thank you card through a social worker or someone like that.
At this time this woman confided in my mom telling her that I had half of her ex-husband's liver! How weird is that? This woman had watched over me in radiology I don't know how many times. She was always especially kind to me. I wonder how it felt to watch her ex-husband's liver being destroyed by a disease and causing an 8-year-old girl endless pain...
As for the second transplant:
We were living in Lincoln by this time. My parents had just seperated, I was eleven years old, in the 6th grade and we (my mom, sister and I) were living at my grandmother's.
On the morning of St. Patrick's Day, March 17th, 1999, I woke up with a start at 6:30 AM. Something told me that there had been a change. Something had happened. It was then that I heard my mom speaking on the telephone just up the stairs from where I was sleeping in the basement. No one else was awake and the only reason I could think for her to be on the phone without me hearing it ring was that she had made the phone call. And if she was making them phone call then...
I walked slowly up the stairs and listened to the conversation, but I knew before I even heard my mom's words that a liver had been found for me. My mom hung up the phone and I crouched at the top of the stairs.
"Mom?" I whispered, getting her attention. "The liver is here isn't it?"
She smiled a worried, but happy smile and said, "Yes. Get dressed and get your bag." (Just like if you're pregnant, you have to keep a bag of clothing and other essentials ready while you're on the list so that you can grab it and go. I had worked hard to keep my backpack stocked with art supplies and books.)
We woke up my sister and Gramma and drove out to the airport to Duncan Aviation. There my mom and I boarded a pretty white jet that had red and blue stripes. The inside of the jet was like a small car. There was a seat for the pilot, a passenger seat beside him, and two regular airplane seats in back. Behind the seats was a little stash of chips and sodas which I was told to help myself to. I declined, saying I couldn't eat since I was about to go into surgery. I was too filled with nervous excitement to eat anyway, though I eyed the Cheetos with a bit of longing. I tried to play cards to distract myself, but mostly I looked out the window. We couldn't really talk since the jet was so loud. We had to wear ear plugs.
We arrived in Minnesota an hour later. I don't remember going to the hospital, but I do remember being there and my dad showing up with the same anxious look on his face as my mom. I knew what to expect this time around and was literally bouncing up and down with excitement. I'm pretty sure I had a goofy grin on my face the whole time. I was just so glad to get this new liver. I also wanted to be strong for my parents.
I remember being wheeled into the OR, seeing the Coleman cooler and watching a nurse sort mounds and mounds of clamps and other metal instruments.
"This is like a kitchen!" I remarked. "It looks like that person is sorting the utensils." I wanted to stay awake and watch more of the hustle and bustle going on around me, but all too soon the anesthesia was given to me and I was out.
I woke up probably eight to ten hours later. I couldn't talk for a day or two since I had to stay on a ventilator. I tried to impress everyone by writing my notes of request in cursive or drawing small doodles. The recovery went great and within a week I was back home in Lincoln. What a difference from the first transplant!
This liver was a whole liver and from someone much younger than me. I seem to remember someone slipping me information that my liver had belonged to a four-year-old girl who'd died in a car crash, but I don't know for sure. I do know that this liver served me well up until last about a year ago. Sure, there were the occasional glitches, but that's bound to happen. For the first three years with my new liver I was PSC-free (PSC is my liver disease)! Unfortunately, it penetrated this liver and now, eight and half years later, the disease has taken control. Still, most organ transplants are supposed to last 10-15 years, so I'm proud of this liver for all that it's done for me. He's been strong.
Who knows what this next transplant experience will be like? All I know for sure is when I get that page on my beeper I am going to be one happy camper.
The gift of life is a fabulous one. I would be dead two times over if it weren't for organ donation. The miracle of giving life to one person through another's death is a gift from God. I will never take for granted the gifts that have been allowed me in my two livers. Every day that I'm alive is a miracle because of them. Please, please, if you are not already an organ donor, become one. What reason do you have not to? I and countless others are living proof that your decision to be an organ donor will save lives. And please, please, don't treat your organs badly. Live healthfully because in doing so you are preserving your life and, when it ends, you could be passing that health and vitality down to someone else. Who knows how many more people could have been saved if a person hadn't destroyed their organs with alcohol, drugs, or poor diet?
Even though they probably will never read this, I want to thank the families who made the decisions for their loved one's organs to be donated and gave me life. No amount of thanks can ever cover the gratitude I feel, but I still want to say thank you and God bless you! :)
And do you know what? I totally left out the best 1st transplant anecdote. Here it is:
We went to radiology a lot, as you can imagine. There was a desk there where a nurse/secretary worked checking people in, dispensing contrast, etc. During all the waits she and my mom had gotten to know each other a little.
Sometime after my first transplant she apparently had a very revealing conversation with my mother. I didn't find out about it until later. First of all, you have to know that one, my first liver was only half a liver and two, you are never told who the donor is unless that person's family chooses to come forward. You can however, send them a thank you card through a social worker or someone like that.
At this time this woman confided in my mom telling her that I had half of her ex-husband's liver! How weird is that? This woman had watched over me in radiology I don't know how many times. She was always especially kind to me. I wonder how it felt to watch her ex-husband's liver being destroyed by a disease and causing an 8-year-old girl endless pain...
As for the second transplant:
We were living in Lincoln by this time. My parents had just seperated, I was eleven years old, in the 6th grade and we (my mom, sister and I) were living at my grandmother's.
On the morning of St. Patrick's Day, March 17th, 1999, I woke up with a start at 6:30 AM. Something told me that there had been a change. Something had happened. It was then that I heard my mom speaking on the telephone just up the stairs from where I was sleeping in the basement. No one else was awake and the only reason I could think for her to be on the phone without me hearing it ring was that she had made the phone call. And if she was making them phone call then...
I walked slowly up the stairs and listened to the conversation, but I knew before I even heard my mom's words that a liver had been found for me. My mom hung up the phone and I crouched at the top of the stairs.
"Mom?" I whispered, getting her attention. "The liver is here isn't it?"
She smiled a worried, but happy smile and said, "Yes. Get dressed and get your bag." (Just like if you're pregnant, you have to keep a bag of clothing and other essentials ready while you're on the list so that you can grab it and go. I had worked hard to keep my backpack stocked with art supplies and books.)
We woke up my sister and Gramma and drove out to the airport to Duncan Aviation. There my mom and I boarded a pretty white jet that had red and blue stripes. The inside of the jet was like a small car. There was a seat for the pilot, a passenger seat beside him, and two regular airplane seats in back. Behind the seats was a little stash of chips and sodas which I was told to help myself to. I declined, saying I couldn't eat since I was about to go into surgery. I was too filled with nervous excitement to eat anyway, though I eyed the Cheetos with a bit of longing. I tried to play cards to distract myself, but mostly I looked out the window. We couldn't really talk since the jet was so loud. We had to wear ear plugs.
We arrived in Minnesota an hour later. I don't remember going to the hospital, but I do remember being there and my dad showing up with the same anxious look on his face as my mom. I knew what to expect this time around and was literally bouncing up and down with excitement. I'm pretty sure I had a goofy grin on my face the whole time. I was just so glad to get this new liver. I also wanted to be strong for my parents.
I remember being wheeled into the OR, seeing the Coleman cooler and watching a nurse sort mounds and mounds of clamps and other metal instruments.
"This is like a kitchen!" I remarked. "It looks like that person is sorting the utensils." I wanted to stay awake and watch more of the hustle and bustle going on around me, but all too soon the anesthesia was given to me and I was out.
I woke up probably eight to ten hours later. I couldn't talk for a day or two since I had to stay on a ventilator. I tried to impress everyone by writing my notes of request in cursive or drawing small doodles. The recovery went great and within a week I was back home in Lincoln. What a difference from the first transplant!
This liver was a whole liver and from someone much younger than me. I seem to remember someone slipping me information that my liver had belonged to a four-year-old girl who'd died in a car crash, but I don't know for sure. I do know that this liver served me well up until last about a year ago. Sure, there were the occasional glitches, but that's bound to happen. For the first three years with my new liver I was PSC-free (PSC is my liver disease)! Unfortunately, it penetrated this liver and now, eight and half years later, the disease has taken control. Still, most organ transplants are supposed to last 10-15 years, so I'm proud of this liver for all that it's done for me. He's been strong.
Who knows what this next transplant experience will be like? All I know for sure is when I get that page on my beeper I am going to be one happy camper.
The gift of life is a fabulous one. I would be dead two times over if it weren't for organ donation. The miracle of giving life to one person through another's death is a gift from God. I will never take for granted the gifts that have been allowed me in my two livers. Every day that I'm alive is a miracle because of them. Please, please, if you are not already an organ donor, become one. What reason do you have not to? I and countless others are living proof that your decision to be an organ donor will save lives. And please, please, don't treat your organs badly. Live healthfully because in doing so you are preserving your life and, when it ends, you could be passing that health and vitality down to someone else. Who knows how many more people could have been saved if a person hadn't destroyed their organs with alcohol, drugs, or poor diet?
Even though they probably will never read this, I want to thank the families who made the decisions for their loved one's organs to be donated and gave me life. No amount of thanks can ever cover the gratitude I feel, but I still want to say thank you and God bless you! :)
Friday, August 29, 2008
For Your Entertainment: Some Drugged Becca
Hi all. So it's 1:57 AM, my Ambien is kicking in sooner than expected so, if I can manage to keep a semi-level head here, you may be entertained rather than scared out of your boots. It was about 1:20 when I noticed I was getting hyper. I wanted to be out of the bed, doing something. I just couldn't relax. So, I took a Lorezepam and, for good meansure, an Ambien. I was exhausted, but reading a book like Breaking Dawn before bed isn't a good way to soothe your way on to slumber. Shoulda stuck with L.M. Bostons books, like I'd planned...
Anywho, here I am and tomorrow I want my bed moved so I can move my reliner into a position that points out the windows. Nature, peoples, nature! We need the trees and the skyline! Else Becca will ball up in the recliner and get all wrinkly and no one will ever be able to distinguish between her and the much-loved, many-times-read paperbacks with which she surrounds herself. Maybe then some abstract artist with oil paints will come and and paint a demented picture of the scene and then all the world will regret placing Becca's recliner away from the window.
I was thinking I'd move the bed to burn off the 1 AM energy, but seeing as how I'm klutsier than a bull in a china shop when I'm on Ambien, I thought better of it. My vision goes all blurry.
I'm halfway through Breaking Dawn. I couldn't stop myself, of course. I'm a little dissapointed so far, but at the same time, at the edge of my seat and I can't stop reading. I finally put my bookmark down halfway through where we first see the half vampire baby! Grrr! Scary!
Okay, okay, here's my short story for the night:
Ullyses reluctantly followed his brother through the stone passages of the castle, festooned though they were for the festival.
"You're going to love this Ullyses. Wonder entertainment. Very thoughtprovoking as well."
I nodded my head more as a sign for him to keep walking than for him to continue on about the merits of whatever talent he was taking me to see next. We walked swiftly, never fearing a false step. Our feet could have been two inches off the ground.
"Here is is," Erik pronoucned, excited. Opening the wooden door they saw a women curtsy to them before lifting up her skirts and sitting down with a sigh on the chamber pot.
"Really, Erik," I said, "a urination? I had my fill of those when I was in Italy."
"But Ullyses, I thought you liked them!" by brother called after me. But to no avail, I was already half way down the flight of stairs.
This website is fun. You can make pretty color combinations. http://kuler.adobe.com/
Off you go then little dears and bunnies and birds! Shoo! Go read another blog!
Anywho, here I am and tomorrow I want my bed moved so I can move my reliner into a position that points out the windows. Nature, peoples, nature! We need the trees and the skyline! Else Becca will ball up in the recliner and get all wrinkly and no one will ever be able to distinguish between her and the much-loved, many-times-read paperbacks with which she surrounds herself. Maybe then some abstract artist with oil paints will come and and paint a demented picture of the scene and then all the world will regret placing Becca's recliner away from the window.
I was thinking I'd move the bed to burn off the 1 AM energy, but seeing as how I'm klutsier than a bull in a china shop when I'm on Ambien, I thought better of it. My vision goes all blurry.
I'm halfway through Breaking Dawn. I couldn't stop myself, of course. I'm a little dissapointed so far, but at the same time, at the edge of my seat and I can't stop reading. I finally put my bookmark down halfway through where we first see the half vampire baby! Grrr! Scary!
Okay, okay, here's my short story for the night:
Ullyses reluctantly followed his brother through the stone passages of the castle, festooned though they were for the festival.
"You're going to love this Ullyses. Wonder entertainment. Very thoughtprovoking as well."
I nodded my head more as a sign for him to keep walking than for him to continue on about the merits of whatever talent he was taking me to see next. We walked swiftly, never fearing a false step. Our feet could have been two inches off the ground.
"Here is is," Erik pronoucned, excited. Opening the wooden door they saw a women curtsy to them before lifting up her skirts and sitting down with a sigh on the chamber pot.
"Really, Erik," I said, "a urination? I had my fill of those when I was in Italy."
"But Ullyses, I thought you liked them!" by brother called after me. But to no avail, I was already half way down the flight of stairs.
This website is fun. You can make pretty color combinations. http://kuler.adobe.com/
Off you go then little dears and bunnies and birds! Shoo! Go read another blog!
Tuesday, August 26, 2008
Annabel and How Famous I Am
This is Annabel, the new rat. We adopted her from Capital City Rat Rescue as a friend for Cupcake, who's older companions weren't too keen on joining in her baby antics. Annabel is still very young, around 3 months old, and she's giving Cupcake a little taste of her own medicine. I think it's good for Cuppers. I think I've already introduced her, but with the way my mind is these days... Click on the picture to view the whole set.I told ya'll I'd show you a present I made for Rayne, so here it is. I've got another one waiting to be uploaded.
I also said I'd tell you how famous I am. Let's just say that everyone I know has told everyone they know about me and my "hard times", so everyday I hear about people who are praying for me, thinking of me, offering help (which I don't need much of, unless you want to clean rat cages). My sister says her teachers take her aside during class to ask about me. My mom is bombarded with more of the same at work. Staci (who runs Capital City Rat Rescue) says she tells all her friends and family about her "brave friend Becca" which I think is so totally sweet.
I feel like I don't deserve all of this attention. I mean, I'm ill, I'm cranky, I hardly ever smell or look good. I should think people would be running away from me making the sign of the cross. Plus, none of this is new to me. I mean, suffering through various maladies and beinging in and out of the hospital is sort of the norm for me. Granted, this is a really bad time, but it's nothing I haven't already been through before.
Today has been more of the same. I slept a lot, I was in pain, etc. etc. I sat outside for a bit, which was nice. Lil' Staci sat out there with me. She has now decided that the wild life is for her, but I insisted she is domestic through and through and put her back in her cage.
Monday, August 25, 2008
Insert A Cool Title Here
Last night I was up until past 4 AM. I got pretty darn close to having another pain episode, but thanks to multiple layers of narcotics, a heating pad and Catching-It-Early, I was okay. My mom had to go out to Walgreens at 2 AM and get me more pain pills. It was either than or another ER visit. So, all in all, I'm glad with how things turned out.
I've been kind of walking on eggshells all day because I know my body is ripe for another episode if I let it. Basically, I've been sleeping, reading and hugging my heating pad. I ate some stuff I didn't want to eat. I just ate it for the sake of eating. Why the hell do I do that? The Chex Mix is only going to make me feel worse, and yet a part of me knows that if I don't eat I'll starve or at least have to have a gastric tube put in, neither of which sound very pleasant. My doctors say I have "anorexia" and, even though they aren't referring to the mental disorder it still sounds bad. Hello, my name is Rebecca and I have anorexia.
Trust me, I would so be gorging myself at Village Inn if I could.
When I started writing this blog I for some reason thought it was going to longer and fun or at least meaningful, but I don't think that's going to happen.
Everyone send happy, healthy thoughts Rayne's way. She was sick(er) today. When I can get the stupid file to upload properly I'll show ya'll the present I made for her.
Remind me to tell ya'll how famous I am, too. I'm too tired right now.
I've been kind of walking on eggshells all day because I know my body is ripe for another episode if I let it. Basically, I've been sleeping, reading and hugging my heating pad. I ate some stuff I didn't want to eat. I just ate it for the sake of eating. Why the hell do I do that? The Chex Mix is only going to make me feel worse, and yet a part of me knows that if I don't eat I'll starve or at least have to have a gastric tube put in, neither of which sound very pleasant. My doctors say I have "anorexia" and, even though they aren't referring to the mental disorder it still sounds bad. Hello, my name is Rebecca and I have anorexia.
Trust me, I would so be gorging myself at Village Inn if I could.
When I started writing this blog I for some reason thought it was going to longer and fun or at least meaningful, but I don't think that's going to happen.
Everyone send happy, healthy thoughts Rayne's way. She was sick(er) today. When I can get the stupid file to upload properly I'll show ya'll the present I made for her.
Remind me to tell ya'll how famous I am, too. I'm too tired right now.
Sunday, August 24, 2008
There and Back Again
Yesterday I spent my morning and early afternoon in the ER because I had one of my episodes. They did a bunch of tests and gave me some pain med. The CT scan showed the my abscess has shrunk even more, which is great. However, since it's been shrinking to rapidly mom and I kind of wonder if it hasn't been leaking it's sickly fluid into my already sickly body...
The last week has been awful, there's no doubt about that. I've been sleeping for most of it, which always throws me off and makes me feel depressed. I dream what I would be doing if I were awake and that kind of screws things up, you know? Did I already relay this important piece of information or was that a dream? Did this really happen or did I just dream that? It ends up feeling like nothing got done.
I have to remind myself that I do get some things done. Why, today I organized my pills, folded laundry, took a bath and had my mom trim my hair (does that last one count as me doing something, though?). I think of what Rayne said in one of her blogs and what my mom has been telling me for years: Even when you are very sick and feel completely useless you can always do at least one thing. Being an avid list-maker and someone who prepares everything far in advance, "one thing" never seems good enough to me. Can't I add in just one more thing? Oh, and that other thing? I think to myself. No, my body replies, no, not today.
The I'm-S0-Tired-It-Feels-Like-Someone-Put-Sandbags-In-My-Organs feeling is back. I sit in my recliner and try to summon the energy to breathe. I try coloring in my coloring books or knitting, but eventually my tools fall out of my hands and I'm panting for breath. I try talking to Rayne online, but summoning the brain power to make an adequete reply or add an anecdote of my own soon becomes too much and I retreat to my bed saying, "I'm just gonna take a nap, I'll be back soon." I wake up four hours later.
I'm almost done putting 2007's Crunchy Bits blog entries in Word format and look what I stumbled across: "I have spent the last two weeks quite literally asleep. Not a good sleep either, a deep, drag you down, limbs weighing a million pounds each sleep. Weird dreams, some of them would make some pretty good novels. Especially the ones with the train."- From This Blog By Rayne
That there is exactly how I feel and what I'm experiencing! I do have some novel-worthy dreams and the only reason I ever wake up from my slumbers is because of duty. I feel I have to show my face to the world or else it will forget about me and do something really cool and I'll miss out on it all.
Last week I was passing on a message to a mutual rat friend for Rayne. "Why don't you just talk to her yourself?" I asked. "She's online."
"I'm too out of it," Rayne replied. "I'd be too embarrassed. You're used to me when I'm like this."
"But I don't think you sound out of it at all!" I exclaimed, although I went ahead and asked our friend about the rat food Rayne needed (although if you look at some of her rats I don't think they need anymore food...well, I'll keep my opinions to myself...)
The point is, I understand where Rayne was coming from now. Sure, it's easy to come off sounding like I'm sitting up in a desk chair, perky as ever, clicking away on my computer, but I can't keep up the charade for long. And it is kind of embarrassing because I want to be there, in the present, talking to my friends and paying them the best of attention, but I can't. I want to express the emotion that a certain comment requires but I just can't summon up more than zombie fluff.
I can't seem to make myself interested in anything. And again I am reminded of how I have stopped believing in time. How can I when I sleep and don't know when I'll wake up? And then my dreams are of what I've done and what I'm planning to do.
Sometimes, when I feel sick and am having trouble going to sleep I imagine that I'm someplace else. Lately, it's been Brambly Hedge for me. In my mind I design my own little home inside a tree. It's quiet there and my troubles and pains can't find me. There is nothing pressing or overly important to worry about and I am free to boil water in my little kettle and make tea from leaves I gathered in the woods. I sew pillows and quilts and knit gifts for all my friends. I write peaceful letters with blackberry ink. If I want, I can put on a pretty dress and a hat and go visit my neighbors, bringing along preserves and freshly picked flowers. I feel better just writing about it.
I made myself go sit outside today. Perpetually cold, I had to bring along my quilt, but it all worked out. I have a nice lawn chair so that I can lie back (I can only sit up for short periods of time). I set my humming IV pump in it's little purse beside me and breathed in the air. It smelled so good. I just couldn't get enough. I took a walk around to look at the plants in our garden. Only two kinds of flowers were in bloom, both of them white. I ran my hands along one of our trees and immediately felt relief and tenderness. I don't know what it is about me and trees, but it's like God is in them. Sometimes I feel as if I could stand there exploring their every branch and leaf forever.
I read a book while I was outside, but eventually I got too cold and tired and went in.
Today Mom went to Target and brought back Hello Kitty coloring books and bags for all. My sister started coloring in my Hello Kitty Coloring and Activivities Book (no, that's not a typo, that's seriously what it says on the book) while I was in the hospital last and, feeling guilty, expressed her desire to replace mine. Then she started coveting one of her own, so when Mom asked if there was anything she could get for us at Target that was my sister's request. My mom also got me a Barbie doll just because it had pink highlights like me. And she brought home lunch. I decided I should probably eat it since I hate leftovers, so I popped a Zofran and ate all but one bite of my all-beef hot dog. Ya'll should be proud of me...except it's the only thing I ate today with the exception of a strawberry Boost with my morning meds.
Poor Mom, she was all excited about this stuff she got and I had to say sorry, I'm gonna go take a nap.
This is officially the longest, most disjointed blog ever.
The last week has been awful, there's no doubt about that. I've been sleeping for most of it, which always throws me off and makes me feel depressed. I dream what I would be doing if I were awake and that kind of screws things up, you know? Did I already relay this important piece of information or was that a dream? Did this really happen or did I just dream that? It ends up feeling like nothing got done.
I have to remind myself that I do get some things done. Why, today I organized my pills, folded laundry, took a bath and had my mom trim my hair (does that last one count as me doing something, though?). I think of what Rayne said in one of her blogs and what my mom has been telling me for years: Even when you are very sick and feel completely useless you can always do at least one thing. Being an avid list-maker and someone who prepares everything far in advance, "one thing" never seems good enough to me. Can't I add in just one more thing? Oh, and that other thing? I think to myself. No, my body replies, no, not today.
The I'm-S0-Tired-It-Feels-Like-Someone-Put-Sandbags-In-My-Organs feeling is back. I sit in my recliner and try to summon the energy to breathe. I try coloring in my coloring books or knitting, but eventually my tools fall out of my hands and I'm panting for breath. I try talking to Rayne online, but summoning the brain power to make an adequete reply or add an anecdote of my own soon becomes too much and I retreat to my bed saying, "I'm just gonna take a nap, I'll be back soon." I wake up four hours later.
I'm almost done putting 2007's Crunchy Bits blog entries in Word format and look what I stumbled across: "I have spent the last two weeks quite literally asleep. Not a good sleep either, a deep, drag you down, limbs weighing a million pounds each sleep. Weird dreams, some of them would make some pretty good novels. Especially the ones with the train."- From This Blog By Rayne
That there is exactly how I feel and what I'm experiencing! I do have some novel-worthy dreams and the only reason I ever wake up from my slumbers is because of duty. I feel I have to show my face to the world or else it will forget about me and do something really cool and I'll miss out on it all.
Last week I was passing on a message to a mutual rat friend for Rayne. "Why don't you just talk to her yourself?" I asked. "She's online."
"I'm too out of it," Rayne replied. "I'd be too embarrassed. You're used to me when I'm like this."
"But I don't think you sound out of it at all!" I exclaimed, although I went ahead and asked our friend about the rat food Rayne needed (although if you look at some of her rats I don't think they need anymore food...well, I'll keep my opinions to myself...)
The point is, I understand where Rayne was coming from now. Sure, it's easy to come off sounding like I'm sitting up in a desk chair, perky as ever, clicking away on my computer, but I can't keep up the charade for long. And it is kind of embarrassing because I want to be there, in the present, talking to my friends and paying them the best of attention, but I can't. I want to express the emotion that a certain comment requires but I just can't summon up more than zombie fluff.
I can't seem to make myself interested in anything. And again I am reminded of how I have stopped believing in time. How can I when I sleep and don't know when I'll wake up? And then my dreams are of what I've done and what I'm planning to do.
Sometimes, when I feel sick and am having trouble going to sleep I imagine that I'm someplace else. Lately, it's been Brambly Hedge for me. In my mind I design my own little home inside a tree. It's quiet there and my troubles and pains can't find me. There is nothing pressing or overly important to worry about and I am free to boil water in my little kettle and make tea from leaves I gathered in the woods. I sew pillows and quilts and knit gifts for all my friends. I write peaceful letters with blackberry ink. If I want, I can put on a pretty dress and a hat and go visit my neighbors, bringing along preserves and freshly picked flowers. I feel better just writing about it.
I made myself go sit outside today. Perpetually cold, I had to bring along my quilt, but it all worked out. I have a nice lawn chair so that I can lie back (I can only sit up for short periods of time). I set my humming IV pump in it's little purse beside me and breathed in the air. It smelled so good. I just couldn't get enough. I took a walk around to look at the plants in our garden. Only two kinds of flowers were in bloom, both of them white. I ran my hands along one of our trees and immediately felt relief and tenderness. I don't know what it is about me and trees, but it's like God is in them. Sometimes I feel as if I could stand there exploring their every branch and leaf forever.
I read a book while I was outside, but eventually I got too cold and tired and went in.
Today Mom went to Target and brought back Hello Kitty coloring books and bags for all. My sister started coloring in my Hello Kitty Coloring and Activivities Book (no, that's not a typo, that's seriously what it says on the book) while I was in the hospital last and, feeling guilty, expressed her desire to replace mine. Then she started coveting one of her own, so when Mom asked if there was anything she could get for us at Target that was my sister's request. My mom also got me a Barbie doll just because it had pink highlights like me. And she brought home lunch. I decided I should probably eat it since I hate leftovers, so I popped a Zofran and ate all but one bite of my all-beef hot dog. Ya'll should be proud of me...except it's the only thing I ate today with the exception of a strawberry Boost with my morning meds.
Poor Mom, she was all excited about this stuff she got and I had to say sorry, I'm gonna go take a nap.
This is officially the longest, most disjointed blog ever.
Friday, August 22, 2008
Projects, Family And A Health Update
I nearly died yesterday getting through my appointments. I could hardly stay upright, I had horrible abdominal cramps, I couldn't stay awake and I was freezing cold. Not to mention I was feeling very irritable. The good news is that the abscess has shrunk a couple inches! Let's hope it keeps on shrinking. I'll get another CT in two weeks and I'll continue with my IV antibiotics.
I've been pretty sick these last few days and have been sleeping almost constantly. Waking up ever 7.5 hours to administer antibiotics was really wearing me down as well. So...I now have a spiffy new pump that goes in a cool bag with lots of pockets. This pump allows me to change out the antibiotic only once a day. Huzzah for sweet convinience!
Last night I had a horrible restless leg episode. My mom did everything but nothing worked. I cried the whole time because I was so tired and I just wanted to sleep but my legs wouldn't let me. We're going to get some more serious doctor help with this now. I mean, I was begging to go to the ER so that maybe I could get some anticonvulsants. Ugh, it was awful.
Today I'm feeling a lot better. Still sleepy, but it's not unbearable. I've got a little more energy and I don't have a lot of pain. So, I tidied my room and made an actual list of things to do. Some of my projects right now are:
Knitting Rayne some birthday presents and gathering other non-knitted gifts.
Knitting some socks.
Trying to send some thank you cards.
Painting by numbers
Making a birthday card for my friend Gina, who is having a birthday tea time tomorrow.
Turning most of Crunchy Bits into a printable word document.
Teaching Annabel, the new rat, that biting (no matter how light and harmless) is frowned upon.
Finishing Inkspell (For some reason that book is starting to frustrate me. I just want it to be over so I can move on.)
Summoning up the inspiration to get on with writing The Master Painter.
Getting my hair re-dyed.
My little sister Ginny went back to school yesterday. She is now officially a senior. The mail never lets us forget this, supplying us anew each day with pamphlets and letters from various colleges. She doesn't know where she wants to go yet, she just knows she wants to leave the state. Right now it sounds like she wants to go on studying theatre. I know she'll continue with cello, photography and art as well. Whatever she does, I know she'll be amazing at it, just like always.
Mom is taking care of me, of course. She's also getting ready for the new school year, though. She's one of the accompanists at Nebraska Wesleyan University in the music department. This year she's cutting back and how much she takes on and she's not doing anything vitally important because you just don't know what she'll have to drop everything and stay with me at the hospital or something like that. Or if a liver becomes available, of course.
So that's my blog today. Written while dizzy and on drugs, but (I hope) a happier blog than the previous. Now I shall eat some toast.
I've been pretty sick these last few days and have been sleeping almost constantly. Waking up ever 7.5 hours to administer antibiotics was really wearing me down as well. So...I now have a spiffy new pump that goes in a cool bag with lots of pockets. This pump allows me to change out the antibiotic only once a day. Huzzah for sweet convinience!
Last night I had a horrible restless leg episode. My mom did everything but nothing worked. I cried the whole time because I was so tired and I just wanted to sleep but my legs wouldn't let me. We're going to get some more serious doctor help with this now. I mean, I was begging to go to the ER so that maybe I could get some anticonvulsants. Ugh, it was awful.
Today I'm feeling a lot better. Still sleepy, but it's not unbearable. I've got a little more energy and I don't have a lot of pain. So, I tidied my room and made an actual list of things to do. Some of my projects right now are:
Knitting Rayne some birthday presents and gathering other non-knitted gifts.
Knitting some socks.
Trying to send some thank you cards.
Painting by numbers
Making a birthday card for my friend Gina, who is having a birthday tea time tomorrow.
Turning most of Crunchy Bits into a printable word document.
Teaching Annabel, the new rat, that biting (no matter how light and harmless) is frowned upon.
Finishing Inkspell (For some reason that book is starting to frustrate me. I just want it to be over so I can move on.)
Summoning up the inspiration to get on with writing The Master Painter.
Getting my hair re-dyed.
My little sister Ginny went back to school yesterday. She is now officially a senior. The mail never lets us forget this, supplying us anew each day with pamphlets and letters from various colleges. She doesn't know where she wants to go yet, she just knows she wants to leave the state. Right now it sounds like she wants to go on studying theatre. I know she'll continue with cello, photography and art as well. Whatever she does, I know she'll be amazing at it, just like always.
Mom is taking care of me, of course. She's also getting ready for the new school year, though. She's one of the accompanists at Nebraska Wesleyan University in the music department. This year she's cutting back and how much she takes on and she's not doing anything vitally important because you just don't know what she'll have to drop everything and stay with me at the hospital or something like that. Or if a liver becomes available, of course.
So that's my blog today. Written while dizzy and on drugs, but (I hope) a happier blog than the previous. Now I shall eat some toast.
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