People of Lyme (kinda sounds like an Olde English story....) know that everyday they feel pain. Somedays the pain is not too bad, almost like "the new normal". Sometimes its so bad you can barely get out of bed. Somedays is a combination between the two, normal in the morning (so you try to do too much with the energy you have), and then exhaustion in the evening. But the people with the Lyme are not the only sufferers of "the dreaded disease". It effects everyone whom YOUR life effects. For instance, in my case, it effects all my co-workers. I am currently on diasability, so all the jobs I did have to be done by others. However, the people that Lyme effects the most are my immediate family. I have noticed more changes in them in the last year then anyone.
My husband, for instance, has become LITERALLY OBSESSED by the game World of Warcraft. He plays it almost every minute of the day that he is not at work, sleeping, eating or going to the bathroom. It is a pretty cool game, awesome graphics, and it goes on forever. It never ends. There are always new rooms, new things to encounter, new challenges to face. It's become his life. His job, although stable and he is VERY good at, seems to be a dead end. He comes home to usually a pain-filled, grumpy wife. This is his escape...takes him to a place where he is in control. However, it's taken over his life, but he doesn't see that. It is something that he enjoys, so I don't want to take it away from him. However, I would love to be able to have a CONSCIOUS CONVERSATION with him, without him in the middle of killing some giant or selling pre-historic weapons. Now, he could counter that I am obessed with facebook (and I'll admit that I do enjoy it). However, you can only harvest so many crops in Farmville, whack so many people in Mafia, or read up on what other people are out doing/enjoying in their lives before it becomes mundane.
My oldest daughter is tall, willow-y, and sensitive. She is also a TWEEN and going through her own major life changes right now. It really sucks for her to have a sick mom who is irratable and tired all the time. Luckily she still wants to share things with me, and I love having talks with her during this especially pivotable time in her own life. Last year she was pulling down all A's and B's...but her grades have slipped to B's and C's. She immerses herself in fantasy worlds of Hannah Montana, American Girl dolls, and Club Penguin. That is all normal (as far as I can tell), but its what she's not telling me is what is worrying me. What is really going on in school that her grades have fallen off? If I was completely healthy, would I be working so hard that I would be missing out on seeing this beautiful, sweet girl develop, or would I be more patient, more tolerable to to the challenges she constantly brings?
My youngest daughter is my baby. She has always been cute, with these chubby cheeks I just looove to smoosh, and a lovebug. She still constantly does what I call "drive by kissings", where she will just enter the room for no reason and wants loving. She is a total social butterfly, and often will get in "trouble" in school for her constant chatter (anyone who knows me......I don't know WHERE she gets that from :). However, in the last 9 months that I have been ill, this sweet little loveygirl has re-sorted to hitting & kicking people she is frustrated by. If a kids picks on her (she's a 2nd grader), then she hits them. If a kid sits by her that she doesn't want she kicks them. We've given her more time-outs than I can count. What happened to my lovey smooshy girl?
I supposed a lot of this could be my own guilt talking. I wish I could do more, be more, but right now I just physically can't. It hurts me, and it hurts others. I wish that I had a World of Warcraft to escape into....but I am a MOM.
Sunday, February 21, 2010
Thursday, February 18, 2010
Death by Long John Silvers
Ok...not really, but I have discovered that food like this no longer "agrees" with me.
Had a doctor's appointment today with yet ANOTHER doctor. This time a OB/GYN surgeon who will be performing a total hysterectomy on me a week from tomorrow. I am actually anxious for this surgery, and when I say anxious...I say READY. This is one problem that a person with Lyme disease doesn't need on top of everything else. So lets GET IT ON...SO I CAN GET ON with dealing with my other issue.
After my appointment, I decided to stop and get some lunch, instead of eating the healthy turkey/cheese/apple combination I was going to eat at home (bad decision #1). Then I decided to go to one of my favorite places to get good, wholesome, American, GREASY food...Long John Silvers (bad decision #2). I then decided against all the remotely healthy baked fish options and got the Chicken Planks meal w/hush puppies and extra crumblies (the crunchy batter pieces) as my choice (bad decision #3). Then I brought it home, sat down with my dog anxiously yapping at my heels...and ate my ridiculous, fat ridden meal (while watching a DVR'd episode of THE BACHELOR, might as well ruin my mind too...LOL).
By about 2:00 in the afternoon my stomach was rolling around like waves crashing on a beach. By the time my daughter got in the car after school, I was naseated, grumpy.......and PHYSICALLY EXHAUSTED. All I wanted to to was take a nap. It consumed me, it was all I could think about. I NEEDED THAT NAP...NOW. As soon as my husband came home from work, I was crashed out in the bedroom. This is about 3:30. He tried to wake me up about 5:30, but he could not awake me. About 6:30 he came into the bedroom to get his jacket to take the kids to get food. Light flooded the bedroom (and so did the Dog), but it finally awoke me.
When he came in the second time, I was in the middle of a terrible nightmare. In the dream I was out in a restaurant with my family, and someone in the restaurant was trying to poison us. They had already gotten to me, because I couldn't think straight. I was running around in the restaurant, like I was drunk or drugged, knocking over things....trying to figure out who was trying to kill us and protect our family. When my husband came in, I was crying when I woke up. How messed up is that?
So effective immediately, I am swearing off greasy food. Okay...let's not get crazy here. I am swearing off Long John Silvers. Don't get me wrong, it's still greasy lovely goodness...but its obviously not for me
Had a doctor's appointment today with yet ANOTHER doctor. This time a OB/GYN surgeon who will be performing a total hysterectomy on me a week from tomorrow. I am actually anxious for this surgery, and when I say anxious...I say READY. This is one problem that a person with Lyme disease doesn't need on top of everything else. So lets GET IT ON...SO I CAN GET ON with dealing with my other issue.
After my appointment, I decided to stop and get some lunch, instead of eating the healthy turkey/cheese/apple combination I was going to eat at home (bad decision #1). Then I decided to go to one of my favorite places to get good, wholesome, American, GREASY food...Long John Silvers (bad decision #2). I then decided against all the remotely healthy baked fish options and got the Chicken Planks meal w/hush puppies and extra crumblies (the crunchy batter pieces) as my choice (bad decision #3). Then I brought it home, sat down with my dog anxiously yapping at my heels...and ate my ridiculous, fat ridden meal (while watching a DVR'd episode of THE BACHELOR, might as well ruin my mind too...LOL).
By about 2:00 in the afternoon my stomach was rolling around like waves crashing on a beach. By the time my daughter got in the car after school, I was naseated, grumpy.......and PHYSICALLY EXHAUSTED. All I wanted to to was take a nap. It consumed me, it was all I could think about. I NEEDED THAT NAP...NOW. As soon as my husband came home from work, I was crashed out in the bedroom. This is about 3:30. He tried to wake me up about 5:30, but he could not awake me. About 6:30 he came into the bedroom to get his jacket to take the kids to get food. Light flooded the bedroom (and so did the Dog), but it finally awoke me.
When he came in the second time, I was in the middle of a terrible nightmare. In the dream I was out in a restaurant with my family, and someone in the restaurant was trying to poison us. They had already gotten to me, because I couldn't think straight. I was running around in the restaurant, like I was drunk or drugged, knocking over things....trying to figure out who was trying to kill us and protect our family. When my husband came in, I was crying when I woke up. How messed up is that?
So effective immediately, I am swearing off greasy food. Okay...let's not get crazy here. I am swearing off Long John Silvers. Don't get me wrong, it's still greasy lovely goodness...but its obviously not for me
Monday, February 8, 2010
We've Got Another Leak!
I couldn't believe it when I checked under the kitchen sink today to see standing water. Soaked through dishwasher detergent boxes, garbage bags, and kitchen towels. We'd sprung another leak! This time our faucet/sprayer hose is a goner. We've already had the plumbers out to the house once this week when our basement ceiling started to leak (issues with the upstairs bathroom toilet). Ah the joys of being a homeowner! When it rains it pours (or considering this Iowa Winter...when it snows it SNOWS!)
The leaks have kind of been a a metaphor to what is going on in my own personal life. In August 2009 I was diagnosed with Lyme Disease after being sick for over a month and a 1/2. Unlike many Lyme Disease sufferers who are misdiagnosed because their tests come out negative, mine came out POSITIVE. However, upon seeing an infectious disease doctor (in the Midwestern state of Iowa), he informed me that "There was no Lyme Disease in Iowa", and that his advice to me was that I was being overmedicated, and to go off all my perscriptions. Upon my husbands and my insistance, we asked for another blood test to be sent to a different lab. It, too, came out positive.
My doctor began to treat me with IV Cephatoraxone. By the time the treatment began, I was in so much pain that I could barely get out of bed in the morning. I would sleep for hours during the day. I couldn't hold my neck up. The pain in my hips and knees was unbearable. Then I developed blood clots in my arms from the picc line sights, and had to be hosptialized for a week. I am still on blood thinnners...which have their own set of problems. Irregardless, my ID doctor refused to treat me for my Lyme Disease past the 14 day IV protocol. Even a trip to the prestigous University of Iowa led to nowhere. There are not any Lyme Literate doctors in Iowa, and the one that is, is not affiliated with any hospital, nor does he take private insurance.
So where am I now? Well....let's go back to that leaking faucet metaphor. My life is constantly plugging the leaks. I am not currently taking any medications to help with the Lyme Disease. I am on medications for Fibromyalgia, as the doc at the UofI believes that is what I have because "Chronic Lyme doesn't exist". I am also preparing myself for having to undergo a hysterectomy within the next couple of weeks. Although I will not have a funeral for my "lady parts" (my baby days are long gone), it does mean more weeks of pain and recovery. Currently I am duct taping my leaks. I am hoping one of these days I will be able to patch the holes properly. In the meantime I will be using this blog to help with my "daily mental floss". Thanks for coming along with the ride!
Laurie
The leaks have kind of been a a metaphor to what is going on in my own personal life. In August 2009 I was diagnosed with Lyme Disease after being sick for over a month and a 1/2. Unlike many Lyme Disease sufferers who are misdiagnosed because their tests come out negative, mine came out POSITIVE. However, upon seeing an infectious disease doctor (in the Midwestern state of Iowa), he informed me that "There was no Lyme Disease in Iowa", and that his advice to me was that I was being overmedicated, and to go off all my perscriptions. Upon my husbands and my insistance, we asked for another blood test to be sent to a different lab. It, too, came out positive.
My doctor began to treat me with IV Cephatoraxone. By the time the treatment began, I was in so much pain that I could barely get out of bed in the morning. I would sleep for hours during the day. I couldn't hold my neck up. The pain in my hips and knees was unbearable. Then I developed blood clots in my arms from the picc line sights, and had to be hosptialized for a week. I am still on blood thinnners...which have their own set of problems. Irregardless, my ID doctor refused to treat me for my Lyme Disease past the 14 day IV protocol. Even a trip to the prestigous University of Iowa led to nowhere. There are not any Lyme Literate doctors in Iowa, and the one that is, is not affiliated with any hospital, nor does he take private insurance.
So where am I now? Well....let's go back to that leaking faucet metaphor. My life is constantly plugging the leaks. I am not currently taking any medications to help with the Lyme Disease. I am on medications for Fibromyalgia, as the doc at the UofI believes that is what I have because "Chronic Lyme doesn't exist". I am also preparing myself for having to undergo a hysterectomy within the next couple of weeks. Although I will not have a funeral for my "lady parts" (my baby days are long gone), it does mean more weeks of pain and recovery. Currently I am duct taping my leaks. I am hoping one of these days I will be able to patch the holes properly. In the meantime I will be using this blog to help with my "daily mental floss". Thanks for coming along with the ride!
Laurie
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