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.
Showing posts with label health update. Show all posts
Showing posts with label health update. Show all posts
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.
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.
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.
Tuesday, January 27, 2009
Health Update
Hi everyone!
Yesterday we went to Omaha and talking to my liver doctor. He didn't change anything in my care, except to have a nutritionist call me with more ideas on how to keep the weight on.
We got to do some fun shopping in Omaha. It pretty much finished me off, but I'm glad we did it.
I was calling back the gyno's office just as we pulled into our driveway and they said they wanted me to come in and get my hemoglobin checked since I had been bleeding more. So, we went straight to their office. My hemoglobin was very low at 8.4 and they decided to admit me so they could give me a blood transfusion and observe me overnight.
I got to be in the brand new women's area at Bryan East. The rooms are really, really fancy. The toilet seats are heated and the toilets even have special washers in them so you can keep clean "down there". It was so awesome.
Still, I was very glad to come home this afternoon. I'm not feeling so weak and the pain isn't as bad and I'm not bleeding so much. So fingers crossed!
Tomorrow I'm going to see some gyno specialists in Omaha and they will decide where we need to go from here. Since I didn't get many of the menopausal effects from the lupron shots it seems that the liver didn't assimilate them like it should. So, my gyno decided it would be good for me to see specialists who were in the same place as my liver doctors, that way they could all work together, especially if I have to have a surgery or procedure (which may happen if things don't improve, but I have high hopes since I'm doing so much better today).
If I start bleeding more again I'm supposed to go straight to Omaha.
Right now I am enjoying being back at home!!
Yesterday we went to Omaha and talking to my liver doctor. He didn't change anything in my care, except to have a nutritionist call me with more ideas on how to keep the weight on.
We got to do some fun shopping in Omaha. It pretty much finished me off, but I'm glad we did it.
I was calling back the gyno's office just as we pulled into our driveway and they said they wanted me to come in and get my hemoglobin checked since I had been bleeding more. So, we went straight to their office. My hemoglobin was very low at 8.4 and they decided to admit me so they could give me a blood transfusion and observe me overnight.
I got to be in the brand new women's area at Bryan East. The rooms are really, really fancy. The toilet seats are heated and the toilets even have special washers in them so you can keep clean "down there". It was so awesome.
Still, I was very glad to come home this afternoon. I'm not feeling so weak and the pain isn't as bad and I'm not bleeding so much. So fingers crossed!
Tomorrow I'm going to see some gyno specialists in Omaha and they will decide where we need to go from here. Since I didn't get many of the menopausal effects from the lupron shots it seems that the liver didn't assimilate them like it should. So, my gyno decided it would be good for me to see specialists who were in the same place as my liver doctors, that way they could all work together, especially if I have to have a surgery or procedure (which may happen if things don't improve, but I have high hopes since I'm doing so much better today).
If I start bleeding more again I'm supposed to go straight to Omaha.
Right now I am enjoying being back at home!!
Sunday, January 25, 2009
Hi all,
Okay, now you finally get the whole story:
My period started getting out of control so Saturday morning I called the gyno on call at the office. She upped my hormone pills and said to call on Monday. Around ten or so in the evening I started to have bad pain that wasn't responding to my normal pain meds. The pain just exploded and so we went to the ER. They gave me a shot of morphine: nothing. Shot of hydromorphone: nothing. They gave me an IV and started shooting drugs into me with only a little improvement. At around 3 AM the admitted me. I was able to get some sleep and I was given a meth pill as a last resort for the pain (so now I've tried meth! It didn't do much...). In the morning the pain was still there, though more tolerable. I was given two different narcotics before I was stable enough to be sent home.
I've slept all day and have to continue on the heavy duty narcotics and meth.
The pain is from my crazy period and what is happening is my body is doing somewhat of the same thing that happens when you give birth. Thus, the horrible pain. So, last night could technically be compared to a long labor, only I still have lots of pain and no baby as a reward.
Okay, now you finally get the whole story:
My period started getting out of control so Saturday morning I called the gyno on call at the office. She upped my hormone pills and said to call on Monday. Around ten or so in the evening I started to have bad pain that wasn't responding to my normal pain meds. The pain just exploded and so we went to the ER. They gave me a shot of morphine: nothing. Shot of hydromorphone: nothing. They gave me an IV and started shooting drugs into me with only a little improvement. At around 3 AM the admitted me. I was able to get some sleep and I was given a meth pill as a last resort for the pain (so now I've tried meth! It didn't do much...). In the morning the pain was still there, though more tolerable. I was given two different narcotics before I was stable enough to be sent home.
I've slept all day and have to continue on the heavy duty narcotics and meth.
The pain is from my crazy period and what is happening is my body is doing somewhat of the same thing that happens when you give birth. Thus, the horrible pain. So, last night could technically be compared to a long labor, only I still have lots of pain and no baby as a reward.
Wednesday, January 21, 2009
Health Update
Hi All,
I hope everyone is doing well!
Unfortunately, I am not doing so great. I seem to getting worse, feeling much as I was in last fall. My appetite has diminished greatly, I'm in much more pain, I have more severe fatigue (if that were possible), and I'm more jaundiced. My blood is having more trouble clotting than usual, another sign that the liver is not doing well. I also started my cycle, which is not supposed to happen when you have menopause, of course. I haven't had a period in around 3 months, so this is weird and, of course not helping my current situation. I'm waiting to hear back from the gyno about that.
I have an appointment to see my primary care doc on Thursday and I see my liver doctor in Omaha at the end of the month. Hopefully someone will have some answers, but I'm not counting on it. I got a blood test yesterday but the med center called and said that my place on the list had not changed. So much for that.
So, being at home stuck in bed more than ever I am, of course, a bit bored (reading and sleeping are all swell, but they do get old after a few days), so anyone who wants to come and entertain me and/or bring me presents is more than welcome! ;-D I'm still trying to make it to my various classes and meetings.
I hope everyone is doing well!
Unfortunately, I am not doing so great. I seem to getting worse, feeling much as I was in last fall. My appetite has diminished greatly, I'm in much more pain, I have more severe fatigue (if that were possible), and I'm more jaundiced. My blood is having more trouble clotting than usual, another sign that the liver is not doing well. I also started my cycle, which is not supposed to happen when you have menopause, of course. I haven't had a period in around 3 months, so this is weird and, of course not helping my current situation. I'm waiting to hear back from the gyno about that.
I have an appointment to see my primary care doc on Thursday and I see my liver doctor in Omaha at the end of the month. Hopefully someone will have some answers, but I'm not counting on it. I got a blood test yesterday but the med center called and said that my place on the list had not changed. So much for that.
So, being at home stuck in bed more than ever I am, of course, a bit bored (reading and sleeping are all swell, but they do get old after a few days), so anyone who wants to come and entertain me and/or bring me presents is more than welcome! ;-D I'm still trying to make it to my various classes and meetings.
Wednesday, January 7, 2009
Health Update
Hi everyone,
I hope you all had a wonderful Christmas and New Year.
I've been doing O.K. lately. Mostly I've been very, very tired. Around Christmas my blood pressure lowering medication built up a little too much and I became very weak so I pretty much slept through most of the holidays, or, if I wasn't sleeping, acting like a brainless zombie. Just ask my mom about all the brainless, and even dangerous, things I did (and continue to do). As always, part of my "slowness" is because my liver isn't filtering chemicals that go straight to my brain. Don't ever give me new instructions on how to do something. It just doesn't work.
I want to thank you all for the lovely, wonderful gifts!!! I want to get out thank you cards, but lately with me, these things don't always come to pass.
I've still been having pain, but it's not as bad as it was, say, 3 months ago. I've started physical therapy and continue to see my pain control doctor.
I've been keeping busy with various projects and social endeavors. Though I don't always have it in me to do everything I want to do, I still am able to get out of the house on a regular basis while (usually) keeping up with things like laundry, rat cages, and keeping my room sumptuously clean and tidy. ;-)
One of my biggest complaints right now is the cold. I'm very sensitive to it and can shut down physically and emotionally pretty quickly when it comes to the cold. Despite keeping my room at around 75 degrees fahrenheit, I usually wear two or three layers of clothing, usually with at least one layer of fleece or some other toasty fabric on each part of my body. If I leave the house I put on even more layers and wear my gloves at almost all times (yes, even indoors).
I also get these horrible chills if I don't keep my pain under control. Sometimes the chills remind me that I have pain I need to take care of because, after living with these paricular pains for over 6 months, I sometimes don't notice them.
As for the menopause thing: I can keep the menopause symtoms under control pretty easily, but the pain in the ovary area is still the same as ever, if not worse. I'm on my second shot now and am due for the next one in a couple months, although if it hasn't delivered satisfactory results by then we'll have to look at other possiblilities.
I've been doing a lot of research into natural pain relief and have completed my Reiki training so I can do more advanced self-healing (this helps my pain a lot). I've also been doing some Reiki on friends and family (and of course the animals) who all seem to really enjoy it.
I have one energy healing group in town who are giving me their services for free. They do wonderful work. I always feel more energized after a session with them and the pain relief I get is sometimes better than narcotics!
I think that pretty much covers it for now. As always, I'll try to keep ya'll updated as often as I can.
I hope you all had a wonderful Christmas and New Year.
I've been doing O.K. lately. Mostly I've been very, very tired. Around Christmas my blood pressure lowering medication built up a little too much and I became very weak so I pretty much slept through most of the holidays, or, if I wasn't sleeping, acting like a brainless zombie. Just ask my mom about all the brainless, and even dangerous, things I did (and continue to do). As always, part of my "slowness" is because my liver isn't filtering chemicals that go straight to my brain. Don't ever give me new instructions on how to do something. It just doesn't work.
I want to thank you all for the lovely, wonderful gifts!!! I want to get out thank you cards, but lately with me, these things don't always come to pass.
I've still been having pain, but it's not as bad as it was, say, 3 months ago. I've started physical therapy and continue to see my pain control doctor.
I've been keeping busy with various projects and social endeavors. Though I don't always have it in me to do everything I want to do, I still am able to get out of the house on a regular basis while (usually) keeping up with things like laundry, rat cages, and keeping my room sumptuously clean and tidy. ;-)
One of my biggest complaints right now is the cold. I'm very sensitive to it and can shut down physically and emotionally pretty quickly when it comes to the cold. Despite keeping my room at around 75 degrees fahrenheit, I usually wear two or three layers of clothing, usually with at least one layer of fleece or some other toasty fabric on each part of my body. If I leave the house I put on even more layers and wear my gloves at almost all times (yes, even indoors).
I also get these horrible chills if I don't keep my pain under control. Sometimes the chills remind me that I have pain I need to take care of because, after living with these paricular pains for over 6 months, I sometimes don't notice them.
As for the menopause thing: I can keep the menopause symtoms under control pretty easily, but the pain in the ovary area is still the same as ever, if not worse. I'm on my second shot now and am due for the next one in a couple months, although if it hasn't delivered satisfactory results by then we'll have to look at other possiblilities.
I've been doing a lot of research into natural pain relief and have completed my Reiki training so I can do more advanced self-healing (this helps my pain a lot). I've also been doing some Reiki on friends and family (and of course the animals) who all seem to really enjoy it.
I have one energy healing group in town who are giving me their services for free. They do wonderful work. I always feel more energized after a session with them and the pain relief I get is sometimes better than narcotics!
I think that pretty much covers it for now. As always, I'll try to keep ya'll updated as often as I can.
Thursday, December 18, 2008
Holiday Health Update
Hi Everyone,
The past week or so has not been a good one for me health-wise. I overdid it over the weekend (even though my body was telling me to stay home and rest) and then on Monday I collapsed. Actually, I started collapsing Sunday night...The point is, I've spent the week basically not moving from my recliner. My pain hasn't been as bad as usual, but I've been so weak and tired. Sleeping is as hard as ever and the menopause isn't helping with anything. I've been doing a lot of Reiki on myself, which has helped magnificently. So has my work with crystals and gemstones. I've also been using my old methods or aromatherapy, herbal teas, herbal/aromatherapy baths and meditation as well. Sometimes all I have the energy to do is close my eyes and meditate and this gives me a chance to let my imagination soar and do things I can't do in real life!
However, migraines have been an almost daily occurrence. I probably have 1-2 days a week where I don't have a migraine. The rest of the time I'm relying on my Imatrex and natural remedies to get me through it.
The pain doctors are now having me take the 12-hour, slow-release narcotics and only allowing me to use the regular ones when I absolutely have to; and if I do, I have to log it. This has been okay since I've just been staying in, but I rely on those narcotics to allow me to do normal things, like going out with friends or cleaning the rat cages.
This weekend is a busy one for me, what with Yule, getting ready for Christmas, babysitting and an Omaha trip (for fun with friends, not to see doctors). And now I've come down with a lovely cold, so my disappointment that I may have to miss these things is mounting. So is my worry that I won't be able to meet expectations. Speaking of which, if you do not receive a Christmas card or gift from me or receive one late, I am very sorry. I've been trying my hardest, but there's only so much I can do and I've already run myself into the ground with overwork many times these past couple of months. My mom, also, has been working like a mad woman to make money and, in her spare time, to take care of me and my sister. So I apologize ahead of time for any lack of gifts or cards. I have not forgotten you!
Blessings to you all!
The past week or so has not been a good one for me health-wise. I overdid it over the weekend (even though my body was telling me to stay home and rest) and then on Monday I collapsed. Actually, I started collapsing Sunday night...The point is, I've spent the week basically not moving from my recliner. My pain hasn't been as bad as usual, but I've been so weak and tired. Sleeping is as hard as ever and the menopause isn't helping with anything. I've been doing a lot of Reiki on myself, which has helped magnificently. So has my work with crystals and gemstones. I've also been using my old methods or aromatherapy, herbal teas, herbal/aromatherapy baths and meditation as well. Sometimes all I have the energy to do is close my eyes and meditate and this gives me a chance to let my imagination soar and do things I can't do in real life!
However, migraines have been an almost daily occurrence. I probably have 1-2 days a week where I don't have a migraine. The rest of the time I'm relying on my Imatrex and natural remedies to get me through it.
The pain doctors are now having me take the 12-hour, slow-release narcotics and only allowing me to use the regular ones when I absolutely have to; and if I do, I have to log it. This has been okay since I've just been staying in, but I rely on those narcotics to allow me to do normal things, like going out with friends or cleaning the rat cages.
This weekend is a busy one for me, what with Yule, getting ready for Christmas, babysitting and an Omaha trip (for fun with friends, not to see doctors). And now I've come down with a lovely cold, so my disappointment that I may have to miss these things is mounting. So is my worry that I won't be able to meet expectations. Speaking of which, if you do not receive a Christmas card or gift from me or receive one late, I am very sorry. I've been trying my hardest, but there's only so much I can do and I've already run myself into the ground with overwork many times these past couple of months. My mom, also, has been working like a mad woman to make money and, in her spare time, to take care of me and my sister. So I apologize ahead of time for any lack of gifts or cards. I have not forgotten you!
Blessings to you all!
Saturday, November 29, 2008
Health Update
Hi everyone,
I know it's been a VERY long time since I've written a health update. Again, not a lot has been going on. I've had some really good days and some really bad days. A few days ago I was in the ER for a pain episode. It started at 8 PM so I loaded up on the heavy drugs and prayed they'd kick in soon. Well, they didn't and it wasn't long before I was puking my guts out as well. I tried so hard to deal with things at home, but it got to the point where I was severely dehydrated, exhausted and still in pain after copious amounts of narcotics. We weren't getting anywhere and it hadn't been worth the hours of agony to try and do things at home so around midnight mom and I headed for the ER.
Then we had the normal problem of getting an IV in me, made so much worse by my dehydration. Some IV goddess eventually came in and made it look easy as pie. Still, one of the most painful IV experiences I've had. I'm sure there were some people down the hall scared out of their wits by my screaming. I got lots of morphine and nausea drugs, not to mention glorious IV fluids (thank you God for IV fluids!) I was feeling a little better. Well, I felt well enough to stand for an X-ray and memorize the Spanish word for pregnancy. I was not thrilled, however, to see my X-ray up on a screen where my chest was more visible than I would have liked it to be for the elderly male X-ray tech.
Anyway, it was weird because usually the pain drugs worked and this time they weren't. They even switched me to the super morphine stuff and even that didn't make a huge difference. The nausea med did help, however and I was finally able to drink some water. I was eventually sent home since my X-ray looked normal. At home I continued to medicate through the night and was still in a lot of pain. I was able to sleep, though and that was a huge plus.
I was still sleeping a lot and having extra pain through to Thanksgiving. However, on Friday I seemed to be doing better. I'm still not tip-top but I did manage to clean the rat cages myself and even do some Black Friday shopping, so I'm pretty proud of myself.
I know it's been a VERY long time since I've written a health update. Again, not a lot has been going on. I've had some really good days and some really bad days. A few days ago I was in the ER for a pain episode. It started at 8 PM so I loaded up on the heavy drugs and prayed they'd kick in soon. Well, they didn't and it wasn't long before I was puking my guts out as well. I tried so hard to deal with things at home, but it got to the point where I was severely dehydrated, exhausted and still in pain after copious amounts of narcotics. We weren't getting anywhere and it hadn't been worth the hours of agony to try and do things at home so around midnight mom and I headed for the ER.
Then we had the normal problem of getting an IV in me, made so much worse by my dehydration. Some IV goddess eventually came in and made it look easy as pie. Still, one of the most painful IV experiences I've had. I'm sure there were some people down the hall scared out of their wits by my screaming. I got lots of morphine and nausea drugs, not to mention glorious IV fluids (thank you God for IV fluids!) I was feeling a little better. Well, I felt well enough to stand for an X-ray and memorize the Spanish word for pregnancy. I was not thrilled, however, to see my X-ray up on a screen where my chest was more visible than I would have liked it to be for the elderly male X-ray tech.
Anyway, it was weird because usually the pain drugs worked and this time they weren't. They even switched me to the super morphine stuff and even that didn't make a huge difference. The nausea med did help, however and I was finally able to drink some water. I was eventually sent home since my X-ray looked normal. At home I continued to medicate through the night and was still in a lot of pain. I was able to sleep, though and that was a huge plus.
I was still sleeping a lot and having extra pain through to Thanksgiving. However, on Friday I seemed to be doing better. I'm still not tip-top but I did manage to clean the rat cages myself and even do some Black Friday shopping, so I'm pretty proud of myself.
Sunday, October 19, 2008
More ER Fun
Hello all,
Today started out okay. I thought myself well enough to brave our normal Sunday morning routine of going to Barnes and Noble. After awhile, though, I started to have pain which quickly turned into a horrible episode. We left right away and my sister dropped my mom and I off at the ER. I was spared a CT scan because I've had so many and the doctor didn't want to up my cancer risk by exposing me to more radiation. I got an X-ray instead and this time I was full of gas! Lovely. The doctor said my X-ray looked just like the ones they see for really colic-y babies. So, after two doses of morphine and a heafy dose of anti-nausea med I was ready to go home. I'm to take Gas-X and do the catnip tea thing.
And that was my day.
Becca
Today started out okay. I thought myself well enough to brave our normal Sunday morning routine of going to Barnes and Noble. After awhile, though, I started to have pain which quickly turned into a horrible episode. We left right away and my sister dropped my mom and I off at the ER. I was spared a CT scan because I've had so many and the doctor didn't want to up my cancer risk by exposing me to more radiation. I got an X-ray instead and this time I was full of gas! Lovely. The doctor said my X-ray looked just like the ones they see for really colic-y babies. So, after two doses of morphine and a heafy dose of anti-nausea med I was ready to go home. I'm to take Gas-X and do the catnip tea thing.
And that was my day.
Becca
Wednesday, October 15, 2008
Health Updates
I've still been suffering from horrible pain, intestinal difficulties and throwing up. We called my doctor's office this morning and they advised us to go to the ER for more tests. So I suppose that is where we'll be going as soon as my mom gets home from work. I seem to just be getting worse with whatever is going on and I hope they can find a solution.
At the moment I'm not in so much pain, but that's due to two doses of narcotics, one of them being the super duper one. I'm going to put a few things in order here, drink a lot of water so my veins will stick out and then I'll be ready for whatever happens.
Many of have been asking about my readiness for a transplant.I am on the list and waiting. I'm not in good shape for a transplant, but I will of course be offered any organ that is right for me. It is up to the doctors to decide if I am able to endure the surgery and recovery at whatever time that organ should become available. Also, the transplant area of the hospital at UNMC works with people who need to be in the hospital up until transplant time by doing everything they can to get them in as good of shape as possible for transplant.
Unfortunately, my placement on the transplant list has nothing to do with how much pain I'm in or how many other troubles I'm having. It relies mostly of liver function numbers from blood tests. Mine usually aren't too bad, considering, so I have not been moved any higher.
I hope that answers some of your questions. I will try to keep you all as updated as possible but you can all feel free to call me, my mother or my sister for more current details on how I'm doing. I know some of you hear about me further down the grapevine in which case feel free to call your normal informer ;-)
<3 Becca
_____________________________
We did go to the ER (and I'm sorry I haven't gotten around to updating ya'll sooner) and a CT scan showed that I was full to bursting with stool. So I got a lovely hospital enema (they're crazy) and was sent on my way.
All the narcotics I've been having to take are making my constipated, thus the build up.
Even after being cleaned out I feel like crap and am still in the same amount of pain. I've been doing a lot of laxatives at home which, so far, haven't made much of a difference.
So that's where we are. We may be going to see my GI or regular family doctor for a follow-up exam.
Becca
At the moment I'm not in so much pain, but that's due to two doses of narcotics, one of them being the super duper one. I'm going to put a few things in order here, drink a lot of water so my veins will stick out and then I'll be ready for whatever happens.
Many of have been asking about my readiness for a transplant.I am on the list and waiting. I'm not in good shape for a transplant, but I will of course be offered any organ that is right for me. It is up to the doctors to decide if I am able to endure the surgery and recovery at whatever time that organ should become available. Also, the transplant area of the hospital at UNMC works with people who need to be in the hospital up until transplant time by doing everything they can to get them in as good of shape as possible for transplant.
Unfortunately, my placement on the transplant list has nothing to do with how much pain I'm in or how many other troubles I'm having. It relies mostly of liver function numbers from blood tests. Mine usually aren't too bad, considering, so I have not been moved any higher.
I hope that answers some of your questions. I will try to keep you all as updated as possible but you can all feel free to call me, my mother or my sister for more current details on how I'm doing. I know some of you hear about me further down the grapevine in which case feel free to call your normal informer ;-)
<3 Becca
_____________________________
We did go to the ER (and I'm sorry I haven't gotten around to updating ya'll sooner) and a CT scan showed that I was full to bursting with stool. So I got a lovely hospital enema (they're crazy) and was sent on my way.
All the narcotics I've been having to take are making my constipated, thus the build up.
Even after being cleaned out I feel like crap and am still in the same amount of pain. I've been doing a lot of laxatives at home which, so far, haven't made much of a difference.
So that's where we are. We may be going to see my GI or regular family doctor for a follow-up exam.
Becca
Saturday, October 11, 2008
A Health and Rat Update
Hi all,
We've had a serious sickness of some sort come into our home and take the lives of four of our rats and make the rest of them very sick. It's been a very exhausting time trying to save the remaining rats and grieving over those who are gone. Daisy, Francis, Bindi and Oreo have passed on. On Thursday I pretty much collapsed from everything that had gone on and I haven't been back to normal yet. In fact, I've been getting worse.
Last night was a close call, but I managed to get through without an ER visit.
Fast forward to earlier in the week. I did go to the pain clinic and I got two nerve blocks for the pain in my pelvic/groin area. Two shots of lidocaine and steroids were given. The lidocaine was heavenly, but once it wore off I was back to where I started and haven't felt any improvement since. I got back in about a week for more shots.
Becca
The Departed:
Daisy
Francis
Bindi
Oreo (on the right)
We've had a serious sickness of some sort come into our home and take the lives of four of our rats and make the rest of them very sick. It's been a very exhausting time trying to save the remaining rats and grieving over those who are gone. Daisy, Francis, Bindi and Oreo have passed on. On Thursday I pretty much collapsed from everything that had gone on and I haven't been back to normal yet. In fact, I've been getting worse.
Last night was a close call, but I managed to get through without an ER visit.
Fast forward to earlier in the week. I did go to the pain clinic and I got two nerve blocks for the pain in my pelvic/groin area. Two shots of lidocaine and steroids were given. The lidocaine was heavenly, but once it wore off I was back to where I started and haven't felt any improvement since. I got back in about a week for more shots.
Becca
The Departed:
Daisy
Francis
Bindi
Oreo (on the right)
Wednesday, October 1, 2008
Finally...A Health Update
Hello all,
I'm sorry I haven't sent out a health update in so long. My excuses are the same as always.
Since I left UNMC I've still been in lots of pain and having plenty of problems along those lines. And even with my determination to gain weight I have somehow lost 6 pounds. I hate how skinny and sickly I look and there is plenty of wardrobe frustration as all of my clothes are now huge on me.
My primary care physician has given me a prescription for a slow release narcotic that I would just take twice a day. That way I can stay on top of my pain better. Nights and mornings are the hardest times for me and often that is when all of my pain meds have worn off.
My GI doctor found anal fissures, which is just grand. We're going for a cream to treat them instead of surgery since I'm not doing too well with surgeries at present.
I'll be starting to get the Depolupron shots in about a week to make my body think I have menopause. Hopefully that will help with some of my lower abdominal pain. Also, she's referred me to a pain clinic, so we'll see how that goes.
All in all, I'm haivng a hard, painful time right now, but I have been able to be more active, which is nice.
Becca
I'm sorry I haven't sent out a health update in so long. My excuses are the same as always.
Since I left UNMC I've still been in lots of pain and having plenty of problems along those lines. And even with my determination to gain weight I have somehow lost 6 pounds. I hate how skinny and sickly I look and there is plenty of wardrobe frustration as all of my clothes are now huge on me.
My primary care physician has given me a prescription for a slow release narcotic that I would just take twice a day. That way I can stay on top of my pain better. Nights and mornings are the hardest times for me and often that is when all of my pain meds have worn off.
My GI doctor found anal fissures, which is just grand. We're going for a cream to treat them instead of surgery since I'm not doing too well with surgeries at present.
I'll be starting to get the Depolupron shots in about a week to make my body think I have menopause. Hopefully that will help with some of my lower abdominal pain. Also, she's referred me to a pain clinic, so we'll see how that goes.
All in all, I'm haivng a hard, painful time right now, but I have been able to be more active, which is nice.
Becca
Wednesday, September 17, 2008
This Is A Long One
I suppose I should start off this blog with a short update on my well being. With the exception of Monday morning, I have been doing remarkably well outside of the hospital. I am certainly in a lot of pain, even more so than usual, but I am determined to get some exercise both to ready myself for the transplant and to help my osteoporosis. This has kept me distracted from the pain and, although it means an extra dose of narcotics midday, I am happy for the accomplishment and sense of living it gives me.
Today I was very sore and tired, but I forced myself to do a few things. I must admit that when my Gramma called and asked if she could accompany me on a walk around the block I almost turned her down saying I needed to rest more today. However, my curiosity in the neighborhood gardens and the beautiful weather got the best of me and I accepted. You see, yesterday evening I was walking around our yard looking for some lingering flowers of summer. I found some, but I was still rather depressed by the lack of variety. I took a few clippings here and there, even a bit of my mother's blooming lavender (ssssh, don't tell) and made myself a rather pathetic little vase. I've been inside so much that I feel I've missed most of the beauties of summer.
My how I was satisfied today! Between our house and my Gramma's live our good family friends the Aikens (their daughter Becky and I were best friends in school). I was walking past their house on my way to Gramma's and saw Kathy stepping out the door. I invited her on our short walk and while she got her shoes I was able to admire her own little plants in the front yard. Then my Gramma had even more beauties, including a butterfly bush filled with butterflies. On our walk we even encountered a tree which had one branch that had turned to a fiery red. Many of the leaves had dropped on the ground and I picked a favorite to press between the pages of a book.
Now I will share a video I took of Annabel:
On to other things. There is much more to tell about my hospital stay in Omaha than my test results and how mean the doctors are to me (don't you notice that when a person is overweight their doctor treats the situation delicately but when they're underweight they feel they can lecture and bully them endlessly?). I don't know if I'll be able to tell it all, but I'll try and pull out some highlights from my memory and write them down. Let see...
My absolute favorite places to go were these: the chapel and the garden. I'd say I liked the chapel more than the garden, though, because the garden had a pond devoid of fish. If you're going to have a pond you need to have fish. It should be the law. Every time I looked in that pond I felt disappointed. The hospital has a great many beautiful gardens and the garden I frequented was on a rooftop, which tended to be chilly, but sunny.
The chapel was difficult the first time I visited. I went in through the side door which was very heavy and had a large piece of woodwork in the ground separating it from the hallway. This was very difficult to get an IV pole over, especially when you're trying to hold open a very heavy door. I later saw that the front doors to the chapel were automatic...
It's a very small chapel, but beautiful. That first time I was there the candle was lit to let us know the Eucharist was present. Unfortunately, it was locked up somewhere otherwise I would have had tasties. I did, however, find the holy water right away and anointed myself the best way I knew how: I painted a cross on my forehead. Next I found a plastic rosary in a sweet little bowl. It said the rosary was for chapel use only. It's too bad. Aren't Catholics always giving out plastic rosaries? I would have loved to have had it. Then I found a bunch of literature that bored me so I looked at the prayer list instead. I saw my name on there and remarked about it to my mother who said something to the effect of, "Yeah, duh, that's because I put it there." So I put down Rayne's name. Then I sat down to rest for awhile and read out loud from Revelation about the beasts because it made mom and I think of Velvet, my cat. Before we left I played "This little piggy" with the toes of a statue of Jesus healing the paralytic let down through the roof.
The second time I went was with my dad who is actually Catholic. I again anointed myself with the holy water and he informed me I was doing it all wrong. Then I remembered that making the cross on your forehead was what you did with the ashes on ash Wednesday. Oops. And someone had taken the rosary! How dare they!
I had two roommates while I was in the hospital. Constance came in at 3 AM my first night there. She was 89 years old and suffering from a bowel obstruction. I was kept awake while they asked her all their questions to admit her. The poor woman could barely think through the morphine but was still in so much pain I wanted to shout at them to get her something. Of course they couldn't until the doctor ordered it. I myself had had to wait three hours for pain medication when I'd gotten to the hospital. Thankfully, an hour or so later, they delivered the goods.
Constance was a sweet old lady, though I often felt frustrated listening to her conversations. She didn't understand things very quickly and had trouble hearing. Still, for an 89-year-old she did remarkably well. I painted her a picture of an orange day lily, but it got lost (so did some of my other paintings. Perhaps there was a botanical watercolor thief on the loose...). Her granddaughter and her daughter, Lily would would come to visit. Lily was just learning to talk and I would often lure her over to my side of the room with my abundance of balloons, stuffed animals and books. This gave Constance time to talk with her granddaughter for which she was very grateful for and thanked me for many times.
One time the phone rang in our room and I picked it up. It was Constance's granddaughter. The ring had woken Constance from her sleep and she picked up the phone when I told her her granddaughter was on the line. She had the hardest time getting her head on straight to talk because she had been sleeping so deeply and having morphine dreams. When she hung up she started telling me about it through the curtain the separated our beds.
"I can understand that," I said, "When I'm on all these drugs I often dream that I've done something and wake up thinking I've already done it. Or vice versa. It makes things so confusing."
"Yes!" she agreed.
When she talked to her doctor later she put her foot down on the morphine issue. She didn't like feeling confused and wanted a different drug. They were able to switch things around for her so she wouldn't have to have to much morphine and I heard her telling her granddaughter later, "I talked to Becca about it and she gave me the courage to bring it up with the doctor."
After I'd been in the hospital for about 5 days Constance was transferred to another ward. She wasn't a transplant patient and had only been placed in the transplant wing because of overflow. The change was very upsetting for her, but she was firm with the nurses and said, "I have to say goodbye to my roommate first." Little, tiny Constance with half her teeth missing and wearing her old floral dressing gown peeked around the corner of the curtain and said her goodbye.
Thirty minutes later I had a new roommate. Alicia was her name. She was soft spoken, in her 50s and accompanied by her mother and sister. She had just had abdominal surgery or some sort. Alicia was another nice, quiet roommate. We didn't talk often, though I think she talked more to my mom. I think we could have had some nice conversations if we both hadn't been feeling so crappy. Maybe I could have gotten to know her better if I had been there longer, but two days or so after Alicia became my roommate, I was discharged from the hospital. I didn't say goodbye-she was sleeping.
I'd better leave it at that for now. This is one long blog entry already.
Today I was very sore and tired, but I forced myself to do a few things. I must admit that when my Gramma called and asked if she could accompany me on a walk around the block I almost turned her down saying I needed to rest more today. However, my curiosity in the neighborhood gardens and the beautiful weather got the best of me and I accepted. You see, yesterday evening I was walking around our yard looking for some lingering flowers of summer. I found some, but I was still rather depressed by the lack of variety. I took a few clippings here and there, even a bit of my mother's blooming lavender (ssssh, don't tell) and made myself a rather pathetic little vase. I've been inside so much that I feel I've missed most of the beauties of summer.
My how I was satisfied today! Between our house and my Gramma's live our good family friends the Aikens (their daughter Becky and I were best friends in school). I was walking past their house on my way to Gramma's and saw Kathy stepping out the door. I invited her on our short walk and while she got her shoes I was able to admire her own little plants in the front yard. Then my Gramma had even more beauties, including a butterfly bush filled with butterflies. On our walk we even encountered a tree which had one branch that had turned to a fiery red. Many of the leaves had dropped on the ground and I picked a favorite to press between the pages of a book.
Now I will share a video I took of Annabel:
On to other things. There is much more to tell about my hospital stay in Omaha than my test results and how mean the doctors are to me (don't you notice that when a person is overweight their doctor treats the situation delicately but when they're underweight they feel they can lecture and bully them endlessly?). I don't know if I'll be able to tell it all, but I'll try and pull out some highlights from my memory and write them down. Let see...
My absolute favorite places to go were these: the chapel and the garden. I'd say I liked the chapel more than the garden, though, because the garden had a pond devoid of fish. If you're going to have a pond you need to have fish. It should be the law. Every time I looked in that pond I felt disappointed. The hospital has a great many beautiful gardens and the garden I frequented was on a rooftop, which tended to be chilly, but sunny.
The chapel was difficult the first time I visited. I went in through the side door which was very heavy and had a large piece of woodwork in the ground separating it from the hallway. This was very difficult to get an IV pole over, especially when you're trying to hold open a very heavy door. I later saw that the front doors to the chapel were automatic...
It's a very small chapel, but beautiful. That first time I was there the candle was lit to let us know the Eucharist was present. Unfortunately, it was locked up somewhere otherwise I would have had tasties. I did, however, find the holy water right away and anointed myself the best way I knew how: I painted a cross on my forehead. Next I found a plastic rosary in a sweet little bowl. It said the rosary was for chapel use only. It's too bad. Aren't Catholics always giving out plastic rosaries? I would have loved to have had it. Then I found a bunch of literature that bored me so I looked at the prayer list instead. I saw my name on there and remarked about it to my mother who said something to the effect of, "Yeah, duh, that's because I put it there." So I put down Rayne's name. Then I sat down to rest for awhile and read out loud from Revelation about the beasts because it made mom and I think of Velvet, my cat. Before we left I played "This little piggy" with the toes of a statue of Jesus healing the paralytic let down through the roof.
The second time I went was with my dad who is actually Catholic. I again anointed myself with the holy water and he informed me I was doing it all wrong. Then I remembered that making the cross on your forehead was what you did with the ashes on ash Wednesday. Oops. And someone had taken the rosary! How dare they!
I had two roommates while I was in the hospital. Constance came in at 3 AM my first night there. She was 89 years old and suffering from a bowel obstruction. I was kept awake while they asked her all their questions to admit her. The poor woman could barely think through the morphine but was still in so much pain I wanted to shout at them to get her something. Of course they couldn't until the doctor ordered it. I myself had had to wait three hours for pain medication when I'd gotten to the hospital. Thankfully, an hour or so later, they delivered the goods.
Constance was a sweet old lady, though I often felt frustrated listening to her conversations. She didn't understand things very quickly and had trouble hearing. Still, for an 89-year-old she did remarkably well. I painted her a picture of an orange day lily, but it got lost (so did some of my other paintings. Perhaps there was a botanical watercolor thief on the loose...). Her granddaughter and her daughter, Lily would would come to visit. Lily was just learning to talk and I would often lure her over to my side of the room with my abundance of balloons, stuffed animals and books. This gave Constance time to talk with her granddaughter for which she was very grateful for and thanked me for many times.
One time the phone rang in our room and I picked it up. It was Constance's granddaughter. The ring had woken Constance from her sleep and she picked up the phone when I told her her granddaughter was on the line. She had the hardest time getting her head on straight to talk because she had been sleeping so deeply and having morphine dreams. When she hung up she started telling me about it through the curtain the separated our beds.
"I can understand that," I said, "When I'm on all these drugs I often dream that I've done something and wake up thinking I've already done it. Or vice versa. It makes things so confusing."
"Yes!" she agreed.
When she talked to her doctor later she put her foot down on the morphine issue. She didn't like feeling confused and wanted a different drug. They were able to switch things around for her so she wouldn't have to have to much morphine and I heard her telling her granddaughter later, "I talked to Becca about it and she gave me the courage to bring it up with the doctor."
After I'd been in the hospital for about 5 days Constance was transferred to another ward. She wasn't a transplant patient and had only been placed in the transplant wing because of overflow. The change was very upsetting for her, but she was firm with the nurses and said, "I have to say goodbye to my roommate first." Little, tiny Constance with half her teeth missing and wearing her old floral dressing gown peeked around the corner of the curtain and said her goodbye.
Thirty minutes later I had a new roommate. Alicia was her name. She was soft spoken, in her 50s and accompanied by her mother and sister. She had just had abdominal surgery or some sort. Alicia was another nice, quiet roommate. We didn't talk often, though I think she talked more to my mom. I think we could have had some nice conversations if we both hadn't been feeling so crappy. Maybe I could have gotten to know her better if I had been there longer, but two days or so after Alicia became my roommate, I was discharged from the hospital. I didn't say goodbye-she was sleeping.
I'd better leave it at that for now. This is one long blog entry already.
Sunday, September 14, 2008
I'm Home!
I'm home!!
My drain was hardly draining and I wasn't having anymore fevers. So the drain was pulled (that hurt) and I was given express instructions to gain weight, keep a food diary for a future appointment with the nutritioinists, do some physical therapy and try to wean myself off the narcotics as much as possible.
I had a happy reunion with the animals and now am enjoying my own pain medication, my own bed and recliner, and my large variety of books and magazines.
Becca
A glimpse into the rat reunion (from my post on the Capital City Rat Rescue forum):
Oh goodness, ya'll--You know my new rat Annabel? Well she's always been so hyper and is a little skittish. I figured she was in the baby stage where humans are ignored and toys and wheels are paid attention to. I didn't think she'd really bonded with any of us yet. I guess I thought wrong because I came home today and she was SO happy to see me! I took her out and she sat still in my hands while she bruxed and purred like a crazy girl! I was so happy and touched that she actually had missed me as much as I had missed her.
Daisy was really cute, too. She LOVES being petted and she I stood at the open door of the FN and she would put her front paws on my chest and sort of lean agaist me while I petted her.
I think the Bindi babies were really relieved to see me, too (which makes sense, since they don't like any other humans).
My drain was hardly draining and I wasn't having anymore fevers. So the drain was pulled (that hurt) and I was given express instructions to gain weight, keep a food diary for a future appointment with the nutritioinists, do some physical therapy and try to wean myself off the narcotics as much as possible.
I had a happy reunion with the animals and now am enjoying my own pain medication, my own bed and recliner, and my large variety of books and magazines.
Becca
A glimpse into the rat reunion (from my post on the Capital City Rat Rescue forum):
Oh goodness, ya'll--You know my new rat Annabel? Well she's always been so hyper and is a little skittish. I figured she was in the baby stage where humans are ignored and toys and wheels are paid attention to. I didn't think she'd really bonded with any of us yet. I guess I thought wrong because I came home today and she was SO happy to see me! I took her out and she sat still in my hands while she bruxed and purred like a crazy girl! I was so happy and touched that she actually had missed me as much as I had missed her.
Daisy was really cute, too. She LOVES being petted and she I stood at the open door of the FN and she would put her front paws on my chest and sort of lean agaist me while I petted her.
I think the Bindi babies were really relieved to see me, too (which makes sense, since they don't like any other humans).
I'm Still Here
Hi All,
I'm sorry I haven't gotten around to writing a new update. I just haven't been feeling up to it. I'm sorry also that I can't respond to all your emails. I love getting them, though!
I had a hard night again Friday night. My IV infiltrated and i had to get a new one,which turned into a very traumatic experience. On top of that it was evening and my liver really hurt. So my sobbing from the IV trauma made my liver hurt all the more and made me cry even more...it was just an awful night. Eventually I got some more pain meds and fell into an exhausted sleep. The bright side: I didn't have a fever.
Yesterday I wore myself out trying to wash myself and getting the exercise I was supposed to get. My dad was in town so he came to visit. I ate too much food and got a stomach ache in the evening, but the liver pain wasn't as bad.
I slept pretty well (or as well as you can in a hospital) last night but of course that meant I didn't wake up to take any pain meds. The morning has been very slow and painful. I still have to rely on my itsy dose of morphine and a pain patch in addition to my regular narcotic. I hope this doesn't mean they'll keep me longer...(I can't leave the hospital on the morphine, which is stupid because I'll just go home and take my own).
Since it's the weekend things are pretty slow. I'll talk to a liver transplant nurse coordinator today and that'll be it until tomorrow. Dad and Ginny are going to come visit me. I hear tell they have The Office Season 4 on DVD.
Becca
I'm sorry I haven't gotten around to writing a new update. I just haven't been feeling up to it. I'm sorry also that I can't respond to all your emails. I love getting them, though!
I had a hard night again Friday night. My IV infiltrated and i had to get a new one,which turned into a very traumatic experience. On top of that it was evening and my liver really hurt. So my sobbing from the IV trauma made my liver hurt all the more and made me cry even more...it was just an awful night. Eventually I got some more pain meds and fell into an exhausted sleep. The bright side: I didn't have a fever.
Yesterday I wore myself out trying to wash myself and getting the exercise I was supposed to get. My dad was in town so he came to visit. I ate too much food and got a stomach ache in the evening, but the liver pain wasn't as bad.
I slept pretty well (or as well as you can in a hospital) last night but of course that meant I didn't wake up to take any pain meds. The morning has been very slow and painful. I still have to rely on my itsy dose of morphine and a pain patch in addition to my regular narcotic. I hope this doesn't mean they'll keep me longer...(I can't leave the hospital on the morphine, which is stupid because I'll just go home and take my own).
Since it's the weekend things are pretty slow. I'll talk to a liver transplant nurse coordinator today and that'll be it until tomorrow. Dad and Ginny are going to come visit me. I hear tell they have The Office Season 4 on DVD.
Becca
Friday, September 12, 2008
Keeping THEM Happy
So the liver people aren't exactly thrilled with me. I've lost 11% of my body weight in two months, my bone disease is getting worse so I need to start doing more exercises and popping the world's supply in Calcium and vitamin D pills. I also need to stop taking so much pain medication. They're giving me those pain patches instead. Apparently I'm not exactly in fit enough shape for a transplant. When I get home I'm supposed to start drinking up to 5 cans of Boost a day. 5! I usually have 1, maybe 2.
The liver pain and fevers are going to be monitored over the weekend and I can get this drain pulled once it's draining next to nothing (which is what I think it's doing now, but I guess I'm not the expert). So it looks like I'm here for the weekend at least.
Today I get to see physical therapy. Wooo.
Becca
The liver pain and fevers are going to be monitored over the weekend and I can get this drain pulled once it's draining next to nothing (which is what I think it's doing now, but I guess I'm not the expert). So it looks like I'm here for the weekend at least.
Today I get to see physical therapy. Wooo.
Becca
Where am I again?
I'm feeling very light-headed and out of it, so I'm going to make this quick:
It was yet another crazy night last night. I had another slight fever, but worst of all my liver was hurting me really badly and I wasn't getting the pain med that I needed. However, they gave me some IV lorezepam that put me to sleep pretty well. I continued to have the pain, I just never woke up enough to request more meds.
Today I still hurt and I feel all light headed and drowsy, kind of drugged though I haven't had anything more than normal. We're still waiting to talk to people in radiology about how the procedure went. Athough we have heard the brief notes they left for other doctors about the procedure.
I've been bleeding from weird places like my nose and gums. There's some weird stuff going on, that's for sure.
Sorry that this email is so weird and disjointed.
Becca
It was yet another crazy night last night. I had another slight fever, but worst of all my liver was hurting me really badly and I wasn't getting the pain med that I needed. However, they gave me some IV lorezepam that put me to sleep pretty well. I continued to have the pain, I just never woke up enough to request more meds.
Today I still hurt and I feel all light headed and drowsy, kind of drugged though I haven't had anything more than normal. We're still waiting to talk to people in radiology about how the procedure went. Athough we have heard the brief notes they left for other doctors about the procedure.
I've been bleeding from weird places like my nose and gums. There's some weird stuff going on, that's for sure.
Sorry that this email is so weird and disjointed.
Becca
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