March 31st, 2009
Alright, this is gonna be quick.
For the past 5 days now I have had excruciating restless leg. I do take medication for it, but despite all our efforts of increasing meds, trying new meds, adding supplements and using holistic methods, nothing has worked. The only thing that will work short-term is to knock me out with heavy-duty narcotics. However, when the drugs start to wake up I'm still sleepy but the restless leg has taken over again. It’s so frustrating and horrible that I've been screaming like a baby.
We went to the ER. They couldn't do anything for me.
In desperation today I called my doctor's emergency line and, miracle of miracles, got a bed at Bryan East! I'm happy for this because of the convenience of having doctors there to help. Maybe they'll put their heads together and figure this out.
What we think this is is my ammonia levels (which are still high) are messing with my brain. Since restless leg is neurological this could be a side-effect of my decreasing brain function.
So, here I go, off to see the wizards (I hope). Please pray for me and send me healing energy!
March 2nd, 2009
Hello everyone,
I'm still at the hospital. The restless leg is getting a little better but they've found other problems to replace it: low blood pressure, dehydration, higher ammonia levels and then of course the fact that I don't eat. So now they're thinking of putting a gastric tube in me to get more calories in me. I've dropped down to almost 110 lbs. (although I've gained some water weight from all the fluids their putting in me.
So, I dunno how much longer I'll be here but people are welcome to smuggle in rats for me! Or spring rolls! Or bring me stones! The nurses have all been pretty impressed with the "small" collection of about 25 stones that I brought (not including jewelry. My Gramma brought me some of the first daffodils and they've bloomed beautifully. I've made a sort of healing altar with the stones, flowers and, of course the Anubis statue (hospital patron god), Buddha and my pewter castle figure.
Thursday, April 2, 2009
Wednesday, March 18, 2009
Health Update
Hi all,
I realize I'm way overdue for a health update. When I need to write on the most is when it's hardest to do because usually that means I'm sick.
Also, before I get into the updates, I apologize if this email makes no sense, has errors or seems disjoined.
So, I'm off the Pristiq (the bad antidepressant) and that helped a little. Of course, I went back into things full swing and wore myself out totally. One litte bit of relief and I forget that all the other stuff is still there and I end up worse off than I started.
Anyway, the dizzyness got worse and I started veering off to one side all the time or blacking out for a second and stumbling and falling. I lost my footing very easily.
The brain function started to go down, too.
One day I just started crying for hours. I don't know where it came from.
I had been having crying episodes that were shorter almost everyday.
I couldn't stand being with more than one, maybe two friends at a time or being in crowded places.
I became so overwhelemed by things that I had to close my eyes when we drove.
Then I started, like a small child, to freak out and cry at the slightest mishap or accident.
I forgot things even more. I zoned out. I couldn't put concepts together, making reading books or watching movies really hard.
All of this is still true today even though on Friday we went to the ER. All they could find out was that my amonia levels were really high (my liver doesn't filter the amonia so it goes straight to my brain and causes the fog anf forgetfullness).
I've been given some yucky meds for the amonia stuff.
In the meantime, just be aware, I'm crazy. Or as Gina put it, a lot like a autistic child.
I realize I'm way overdue for a health update. When I need to write on the most is when it's hardest to do because usually that means I'm sick.
Also, before I get into the updates, I apologize if this email makes no sense, has errors or seems disjoined.
So, I'm off the Pristiq (the bad antidepressant) and that helped a little. Of course, I went back into things full swing and wore myself out totally. One litte bit of relief and I forget that all the other stuff is still there and I end up worse off than I started.
Anyway, the dizzyness got worse and I started veering off to one side all the time or blacking out for a second and stumbling and falling. I lost my footing very easily.
The brain function started to go down, too.
One day I just started crying for hours. I don't know where it came from.
I had been having crying episodes that were shorter almost everyday.
I couldn't stand being with more than one, maybe two friends at a time or being in crowded places.
I became so overwhelemed by things that I had to close my eyes when we drove.
Then I started, like a small child, to freak out and cry at the slightest mishap or accident.
I forgot things even more. I zoned out. I couldn't put concepts together, making reading books or watching movies really hard.
All of this is still true today even though on Friday we went to the ER. All they could find out was that my amonia levels were really high (my liver doesn't filter the amonia so it goes straight to my brain and causes the fog anf forgetfullness).
I've been given some yucky meds for the amonia stuff.
In the meantime, just be aware, I'm crazy. Or as Gina put it, a lot like a autistic child.
Sunday, March 1, 2009
The Newspaper Article
Alrighty, here's the link to the newspaper article! I hope you all enjoy! Let me know what you think.
http://www.journalstar.com/articles/2009/03/01/news/local/doc49a9edea9cc90501695797.txt
http://www.journalstar.com/articles/2009/03/01/news/local/doc49a9edea9cc90501695797.txt
Friday, February 27, 2009
Health Update Among Other Things
Boy have I got updates for ya'll!
I'll start with my health stuff--
For the past week I've been feeling icky and it's just been getting worse. I've got plenty of tummy problems, nausea, migraines, trouble breathing, pain, etc. I've been sleeping 10-20 hours at a time, which I really hate (I would rather being doing something and I'm already disoriented enough). So, today we called my family doc to see if anything looked weird on the blood test results from a couple days ago. Besides being in anemic and having horrible liver readings there was nothing that jumped out to the doctor, I guess. However, when I talked to the nurse on the phone she decided that it would be best if I came in and saw the doctor, so I'll go in on Tuesday.
Of course, I always get the sickest and have emergencies on the weekend when all the doctor's offices are closed, so I made sure I had a few things in order in case I needed to go to the hospital and wrote up a list of all my symptoms. I wanted to call UNMC right away even though we would just be able to talk to a liver doctor on call. I guess I was feeling pretty desperate. I'm not in a whole lot of pain, per se, but I am extremely uncomfortable. There's so much going on at once that I feel completely overloaded. Anyway, I guess we'll wait until Monday to call UNMC unless we really have to call sooner. I mean, there's not much they can do except look at test results, so...
However, I gave my list of symptoms to my mom and she started thinking about how I first started showing signs of feeling like this when I started a new antidepressent that was also supposed to work for pain control and hot flashes. The first sign was that I started getting lots of migraines. Naturally, I took my Imatrex (with is a triptan drug) to take the migraine away. Well, turns out the Pristiq (the new drug) interferes with triptan drugs. Makes sense since I had noticed that on the days I took my migraine med I would start seeing things (like I could swear that stationary objects were moving, for example), I would get really dizzy and I would have these shaking episodes. Most of my other symtoms were listed as side-effects for the Pristiq (nausea, fatigue, etc.).
Mom called my psychiatrist's office and so now I'm supposed to wean myself off the new antidepressed and back onto old faithful (Lexapro). I really, really hope it works.
In much more exciting news-
Those of you from Lincoln who get the Journal Star may remember this article from a couple weeks ago: http://www.journalstar.com/articles/2009/02/12/news/local/doc499379d8b141c557920173.txt
When I read about Sam I just felt this sort of calling, like I should meet with him and his family and encourage them. I guess I saw something of myself in Sam. That and I had all sorts of oragami to give him!
After emailing the author of the article (whom I already knew) and getting in contact with Sam and his family we were finally able to meet yesterday at my house. The journalist and photographer came as well to do a follow-up story. It will appear in Sunday's newspaper.
Sam is such an amazing kid and his enthusiasm is contagious. I'm so glad I had that light in my day before I started feeling so much worse. I can't wait to meet him again and also his sister Taylor. I know Natalie wants to meet her as well so she can pass on her wisdom about being the sister of a chronically ill person :P
In sad news-
Our rat Shirley finally passed on in her sleep today. Shirley was over three years old (ancient for a rat) and could hardly move on her own. We had been hand-feeding her nutritional shakes for a couple months and she was always so grateful and loving and happy. She would brux (when rats crunch their teeth together to show they're happy) as much as she could when we held her for feedings. She was quite the inspiration and will be sorely missed.
I adopted Shirley about three years ago from a family who's pet snake had rejected her as food. She spent her life here stashing food in my desk drawers and chewing my iPod cords. I got her name from a cashier at Wal-Mart who, when she saw a rat on my shoulder, told me about how her daughter-in-law had just gotten a white rat named Shirley. I thought it was a great name and so my next albino became Shirley.
I'll start with my health stuff--
For the past week I've been feeling icky and it's just been getting worse. I've got plenty of tummy problems, nausea, migraines, trouble breathing, pain, etc. I've been sleeping 10-20 hours at a time, which I really hate (I would rather being doing something and I'm already disoriented enough). So, today we called my family doc to see if anything looked weird on the blood test results from a couple days ago. Besides being in anemic and having horrible liver readings there was nothing that jumped out to the doctor, I guess. However, when I talked to the nurse on the phone she decided that it would be best if I came in and saw the doctor, so I'll go in on Tuesday.
Of course, I always get the sickest and have emergencies on the weekend when all the doctor's offices are closed, so I made sure I had a few things in order in case I needed to go to the hospital and wrote up a list of all my symptoms. I wanted to call UNMC right away even though we would just be able to talk to a liver doctor on call. I guess I was feeling pretty desperate. I'm not in a whole lot of pain, per se, but I am extremely uncomfortable. There's so much going on at once that I feel completely overloaded. Anyway, I guess we'll wait until Monday to call UNMC unless we really have to call sooner. I mean, there's not much they can do except look at test results, so...
However, I gave my list of symptoms to my mom and she started thinking about how I first started showing signs of feeling like this when I started a new antidepressent that was also supposed to work for pain control and hot flashes. The first sign was that I started getting lots of migraines. Naturally, I took my Imatrex (with is a triptan drug) to take the migraine away. Well, turns out the Pristiq (the new drug) interferes with triptan drugs. Makes sense since I had noticed that on the days I took my migraine med I would start seeing things (like I could swear that stationary objects were moving, for example), I would get really dizzy and I would have these shaking episodes. Most of my other symtoms were listed as side-effects for the Pristiq (nausea, fatigue, etc.).
Mom called my psychiatrist's office and so now I'm supposed to wean myself off the new antidepressed and back onto old faithful (Lexapro). I really, really hope it works.
In much more exciting news-
Those of you from Lincoln who get the Journal Star may remember this article from a couple weeks ago: http://www.journalstar.com/articles/2009/02/12/news/local/doc499379d8b141c557920173.txt
When I read about Sam I just felt this sort of calling, like I should meet with him and his family and encourage them. I guess I saw something of myself in Sam. That and I had all sorts of oragami to give him!
After emailing the author of the article (whom I already knew) and getting in contact with Sam and his family we were finally able to meet yesterday at my house. The journalist and photographer came as well to do a follow-up story. It will appear in Sunday's newspaper.
Sam is such an amazing kid and his enthusiasm is contagious. I'm so glad I had that light in my day before I started feeling so much worse. I can't wait to meet him again and also his sister Taylor. I know Natalie wants to meet her as well so she can pass on her wisdom about being the sister of a chronically ill person :P
In sad news-
Our rat Shirley finally passed on in her sleep today. Shirley was over three years old (ancient for a rat) and could hardly move on her own. We had been hand-feeding her nutritional shakes for a couple months and she was always so grateful and loving and happy. She would brux (when rats crunch their teeth together to show they're happy) as much as she could when we held her for feedings. She was quite the inspiration and will be sorely missed.
I adopted Shirley about three years ago from a family who's pet snake had rejected her as food. She spent her life here stashing food in my desk drawers and chewing my iPod cords. I got her name from a cashier at Wal-Mart who, when she saw a rat on my shoulder, told me about how her daughter-in-law had just gotten a white rat named Shirley. I thought it was a great name and so my next albino became Shirley.
Monday, February 2, 2009
Health Update
Just so ya'll know, I'm home now. Hooray! Velvet is just ecstatic and won't leave my side. I'm pretty ecstatic myself. Everything seems clearer, somehow, being home. Yes, I hurt, but it's more definable. I don't feel like I'm sinking into a plastic bed and all semblance of who I am has left me. Perhaps it's the lack of all the drugs...But stil, it's like I have my essence back and now I can at least deal with my pain and other issues with my own feelings and beliefs. It's hard to explain...
Anyway, I got my unit of blood and I think it helped. Maybe that's why I feel more like myself.
Well, I go now to wash off all the hospital grime.
Anyway, I got my unit of blood and I think it helped. Maybe that's why I feel more like myself.
Well, I go now to wash off all the hospital grime.
Sunday, February 1, 2009
Health Update
Hi Everyone,
I'm still in the hospital. I've been sleeping nonstop basically. I have had no appetite except to eat my beloved yogurt melts. I'm trying to keep hydrated as dehydration is part of my problem (high sodium, low potassium).
The bleeding is just as bad as ever and so is the cramping. I had some pretty painful episodes last night and again this morning. As much as I hate being here, I was glad I was able to get some IV morphine during those episodes!
My hemoglobin is down to 8.6 (just a teeny, tiny bit higher than it was when I had to get my blood transfusion) so it sounds like they're going to give me one unit of blood and then send me on my way. Of course, they said that at around 11:00 this morning and now it's 1:30. I just hope they don't start it so late that I have to stay another night.
Anyway, that's it for now.
I'm still in the hospital. I've been sleeping nonstop basically. I have had no appetite except to eat my beloved yogurt melts. I'm trying to keep hydrated as dehydration is part of my problem (high sodium, low potassium).
The bleeding is just as bad as ever and so is the cramping. I had some pretty painful episodes last night and again this morning. As much as I hate being here, I was glad I was able to get some IV morphine during those episodes!
My hemoglobin is down to 8.6 (just a teeny, tiny bit higher than it was when I had to get my blood transfusion) so it sounds like they're going to give me one unit of blood and then send me on my way. Of course, they said that at around 11:00 this morning and now it's 1:30. I just hope they don't start it so late that I have to stay another night.
Anyway, that's it for now.
Friday, January 30, 2009
Health Update
Hello,
I meant to get an update out sooner, but things move pretty slow for me right now.
Anyway, on Wednesday I saw a gyno specialist dude in Omaha who recommended a few things we're going to try. Unfortunately, while these methods may make me "better" I will have the same amount, if not more, pain and the bleeding will probably continue.
Thursday morning I went into my local gyno's office to get my hemoglobin checked because I had been feeling so weak. Surprisingly, my hemoglobin was 10.6 (even higher than it was after my blood transfusion), so that was good news. However, it didn't change the way I felt. In fact, looking back, I'm surprised I didn't faint on my way out of the hospital building. I spent the rest of the day in bed reading and sleeping. In the evening I tried to fold a small load of laundry but I had to do it in stages I was so weak. Kinda pathetic, huh?
But...I got to talk to some friends yesterday, which was awesome. I get a little lonely being in my room all day with nothing but sleeping rats and a demonic--I mean, loving--black cat. Poor Velvet, she works so hard to take care of me and worries herself whenever I leave the house (she never knows if I'm just going out for an appointment or if she won't see me for a week or two). But yeah.
Today I'm doing a little worse (so far), but I hope things will look up as the day goes on.
I meant to get an update out sooner, but things move pretty slow for me right now.
Anyway, on Wednesday I saw a gyno specialist dude in Omaha who recommended a few things we're going to try. Unfortunately, while these methods may make me "better" I will have the same amount, if not more, pain and the bleeding will probably continue.
Thursday morning I went into my local gyno's office to get my hemoglobin checked because I had been feeling so weak. Surprisingly, my hemoglobin was 10.6 (even higher than it was after my blood transfusion), so that was good news. However, it didn't change the way I felt. In fact, looking back, I'm surprised I didn't faint on my way out of the hospital building. I spent the rest of the day in bed reading and sleeping. In the evening I tried to fold a small load of laundry but I had to do it in stages I was so weak. Kinda pathetic, huh?
But...I got to talk to some friends yesterday, which was awesome. I get a little lonely being in my room all day with nothing but sleeping rats and a demonic--I mean, loving--black cat. Poor Velvet, she works so hard to take care of me and worries herself whenever I leave the house (she never knows if I'm just going out for an appointment or if she won't see me for a week or two). But yeah.
Today I'm doing a little worse (so far), but I hope things will look up as the day goes on.
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