Thursday, April 2, 2009

2 Health Updates

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.

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.

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

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.

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.

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.

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.

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!!

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.

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.

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.