Entry for September 30, 2005
Still feel bad. Fatigue, cp. Me and the couch are buds!

Entry for September 29, 2005
Well, Last night while at church I started to feel really wiped out and my chest pain came back. My Doctor believes it is related to the mitral valve prolapse. But, I have read that chest pain (cp) is also a symptom that goes along with the autonomic disorder. But, with my history of the heart attack we watch it a little closer.
So Today is not a good day. The cp would not go away. It just drains me. Also, I am dehydrated. My blood pressure is in the high 80's to low 90's for the top number. My heart rate is in the low 100's. Since my blood pressure was so low I was not able to drive today. That's okay, I didn't feel like going anywhere.
You gotta love the couch!

Yesterday morning I was very very very foggy. As the day progressed my fog began to lift and I was able to do more.

Great news Tuesday afternoon!! Dr. Li's office called me. I thought it was to tell me that they were sending the referral letter to Vanderbilt. But, they were calling to tell me that yes they had talked to Vanderbilt and I have an appointment for Jan 31 @ 2:30pm.
Dan and I are so excited.

Today I am doing pretty good. No skating today. I went yesterday for about one hour. Had a great time.
Wednesday, Sep 28, 2005

Not one of my better days. A couch day. Some CP, extreme tiredness. Feel better laying down.

Rough night last night. BP up to 130/70. HR 105. I was SOB and having CP. I took a propranolol and a whole Bendadryl. I was finally able to fall asleep. This morning I was very tired and a little foggy. Okay, actually I was very foggy all day. I felt like my brain was in cement.
I made it to Sunday School and church. Dan told me this afternoon, that he had his doubts that I would make it out the door. I slept really, really hard for 2 hours this afternoon. I couldn't defog my brain enough to go to church this evening.
I feel funny this evening. Can't describe it. Some chest pain. Nauseated and hot. (yesterday I was so cold. I just couldn't get warm)
Well, tomorrow is another day.
Sunday, Sep 25, 2005

Still doing well. I only took 1/2 a benadryl to sleep last night. My legs are feeling good with the special herbal leg formula that I started taking. Skated from 1130 to 1500 today and then went to a friends house for about 1 and 1/2 hours. Was home by 5.
My blood pressure tonight was 120/7o with my heart rate at 105.
Well, I'm going to bed earlier tonight. I'm tired after all of that skating and visiting.
Oh, today at skating my students were commenting on my increased energy and the fact that I was actually demonstrating jumps. People can tell when I am feeling good.
More later.


Saturday, Sep 24, 2005

Ohh, I just wrote this whole entry and it disappeared from the screen! So, here goes another try.
I was very groggy when I woke this morning. Last night I only took 1 1/2 benadryl. But, will need to cut back for tonight. I fixed breakfast and layed down and slept really hard from 0730 to 0845.
I went into town for a 0930 meeting and made it back home at 3pm. Long day but I was doing well and didn't need a nap! I sat down a little and put my feet up. Then my ride came and took me to church for the ladies meeting.
Other than my slow start to the morning, I had a pretty great day.
Tonight I only took one benadryl, so we will see how I do. Oh, the herb for my legs really seems to be working!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Yah hooooooo!!!!!
Thursday, Sep 22, 2005

Pretty good day today. Very groggy this am, layed down from 8-1030am. Think I need to cut back on the benadryl. So, will do that for tonight.
But, feel really good. Just a little tired, but no fatigue for the last few days. That is half the battle. If I don't have the fatigue I can do just about anything.

Wednesday, Sep 21, 2005

Sunday went pretty well. I did not sleep well Saturday night. My blood pressure Sunday am was only 88/61. But, I felt fine. It was friend day at church and we had both invited people. We were very excited as we had a total of four friends come!!!!
I napped really hard Sunday afternoon. Dan woke me up to go to church and I was have a really hard time with brain fog. It continued on through Monday night. I seem to be doing better today. Not so off-balance as Sunday night and Monday.
I've been having trouble sleeping again. Even with the benadry, so the last two nights I have been taking 2 tabs instead of the one. I did pretty well last night. Went to sleep a little after 11pm and I think I stayed asleep all night.
Today my blood pressure is up in the 90's (along with my heart rate).
I have skating today for 1/2 an hour. I remember last week, I felt really good after skating, so I'm hoping the same will happen today. I plan to skate tomorrow for 1/2 an hour. Then I have AWANAS at church that night. Thursday morning I have a presentation at Interim for the Clinical staff. I usually try to stay home on Friday to rest up for Saturday's busy day of skating.
Yesterday, Monday, I was able to vacuum, wash the sheets, wash the towels, run the dishwasher and fix breakfast and lunch. I did take a long hard nap though!
Write more later this week. I seem to be doing pretty well.
Tuesday, Sep 20, 2005

Skating today. I did pretty well. Skated from 1130 to 1430 with two 15 minute breaks. Came home worked in garden for about 15 minutes. Was able to relax for a little bit but did not nap. Then Dan came home and we changed clothes and went to the ranch city party. We haven't been in several years. Probably not since the last time that we had free tickets.
It was good to see so many people out. Dan and I both visited with various friends. You just never know who you will see there! I made it for a couple of hours then I started getting really tired so we headed home before the music started. It was so very crowded, filled the entire industrial building at the fairgrounds. Ned Ledoux and his band from Nashville are to play. Ned is Chris Ledoux's son.
Tomorrow is friend day at church and we have invited several people and I'm picking up one person. I'm really tired, so I better head off to bed. So, glad that I got a break from cooking supper tonight.
Overall a pretty good day!

Thursday I wound up staying home all day. I felt like I had drank five pots of coffee. Very anxious, constantly on the move, and unable to focus long enough to complete tasks. I was a pacing and pawing all day long. Dan came home from work to a wife who was chattering a mile a minute about nothing and changing subjects just as fast. He just smiled and said, ya been like this all day?
I started drawing and doodling after supper and it really, really helped to calm me down. It was the most focused I had been able to be all day. After an hour, two pictures and a doodle page, I was able to go to bed and fall asleep. I did wake up a few times during the night but was able to go back to sleep.
I made an appointment to see Dr. Li in one month as per his request.
Today was a pretty good day. I was able to go into Interim for 4 hours. That is the longest I have been in there for some time.
Tomorrow is skating. I have plenty of help lined up, so I should be okay.
The side effects from the florinef are already beginning. My face is already starting to turn red and I think it looks a little puffy. No noticeable difference with my blood pressure yet. Today it was 94/56 and heart rate this am was 95.


Friday, Sep 16, 2005 - 09:36pm

Wow, time sure does fly. I didn't realize it's been since Monday when I last made some notes. I'm doing pretty good. No major changes. My heart rate is remaining in the 90's with normal activity and higher with walking and working outside.
Tuesday I went skating for 1/2 an hour and felt really, really good. I was feeling so good all evening. Dan was dragging and I was still feeling good!
Wednesday I woke up feeling pretty good; but when my blood pressure was measured it was only 87/66. My heart rate was good, in the 80's. So, I rearranged my schedule a little. I don't drive when my blood pressure is so low.
Today, I feel the fatigue back in me. It feels like a have cement blocks inside of me and sitting up is hard. I will just re-adjust my plans for today and see if it will leave me with a morning nap instead of an afternoon rest period.
Then maybe I can go into town to Interim. If not, I will just go in tomorrow.
The really good news is that with the help of the benadryl and hot bath before bed; I'm able to fall asleep within 15-20 minutes and I'm staying asleep all night!!!!

Thursday, Sep 15, 2005

Yesterday morning started out a little sluggish but by the time church was over I was feeling much better. Took a nap between services and was able to make it back into town for the 5:30 service. (I often don't make it back for the evening service).
Today a little sluggish with some low bp feelings but that improved if I was careful with my activities and didn't stand for so long.
I am still requiring benadryl for sleep. The good news is that for the first time in several weeks I slept through the night without waking up at all. It was very exciting for me.
This morning I over did it working outside. My blood pressure dropped and my heart rate went very high. Dan helped me fix some lunch and then I layed down for about 3 hours.
I feel a little shaky and have some chest pain and tightness tonight. A little jittery feeling.
Tonight will be my last natural bath treatment. I will have used up the supply. I guess it's not going to work. Oh well, it was worth a try.
I am still taking all of my new herbs. I think the leg formula is really helping. I am taking double the recommended dose. When the pain calms down a bit I will reduce the dose.
Well, I better get some supper fixed.
Monday, Sep 12, 2005

Entry for September 10, 2005
We were at the doctors for quite a while. He saved me for last so he wasn't so rushed. It has been quite sometime since I had been in for an official visit. I am always struck at his true kindness and caring towards Dan and I. Dr. Li sees Dan and I out and about around town, and he always stops and visits. He is also a customer of Dan's.
We always brainstorm at my visits. We throw around what the most prevelant of symptoms are, which ones are worst, which ones we should treat first and what treating one symptom would do to the other symptoms. But here is our plan of attack :
1. He is going to call Vanderbilt and found out what information they need for a referral.
2. Keep Atenolol at 1/2 tab qam. (this is for my heart rate)
3. Re-start Florinef one quater tab qd (this medicine makes my blood pressure increase by causing my body to retain sodium. Just for the record, I HATE THIS Medicine.) I have been on this medicine two other times. It does help, but we know that I can't stay on it forever as my blood pressure steadily increases and increases and increases. The first time I was on this medicine I was not on the home med monitor and failed to realize my blood pressure was increasing to dangerous levels. I blacked out in the shower one day Dan came and got me and took me into to the docs. My blood pressure was over 200. The second time I was on the drug I had the home med monitor. The home med monitor is an automated blood pressure/heart rate/weight machine that is computerized to automatically summon me to measure my vital signs at 9am and 6pm. I can also trigger it as needed. The results are then transmitted via phone line to my home health agency. Then their computer software flags anything out of the norm. The nurses then fax my reports to Dr. Li whenever he needs them. So, getting back to the second time, this monitor saved me from a high blood pressure crisis. By having the daily results we could see where my blood pressure was gradually increasing over time. We were able to discontinue the med before it sent me into a crises. I anticipate this is what will happen again. But, I will get to feeling a little better for a little while.
4. Take the propranolol as needed for abnormal heart beats, high heart rates and chest pain.
5. Follow-up in one month.
6. Discussed the possibility of discontinuing the atenolol all together and only taking the propranolol as needed. He feels I should be able to function with my heart rates consistently in the 100 to 105's. Said I should only be concerned if my heart rates are in the 120's. This is wher him and I disagree. I don't tolerate my heart rate above 100 at all. At 105 I get short of breath and only feel good if I am lying down. (my heart rate drops if I am lying down). So, I don't think eliminating the atenolol is ever going to happen. This morning my heart rate was 117 when I got up.
7. Try benadryl for sleep if that doesn't work, he has some other ideas.
8. Will research other alternative to neurontin but feel that neurontin is probably the best option for my autonomic neuropathy at this time. (This makes my legs have pain, feel like they are on fire, feel cold, etc.) Part of the reason I'm not able to fall asleep and stay asleep.
So, we did cover a lot of things. He also scolded me for not coming in sooner. Said he worry's about me when he doesn't hear from me. That's why he is making me come back in one month...
He is very anxious to get me the referral to Vanderbilt so hopefully we will know soon!

I have an appointment with Dr. Li tomorrow afternoon.

Entry for September 08, 2005
My new herbal things finally arrived. I am taking herbs for my leg pains, sleep, and fatigue. We will see what happens. I started them yesterday.
Yes, I am still soaking 45 minutes a day in the tub with that special soap and neutralizer. It gives a good mental health break I guess. I committed myself to bathing until I ran out of the product. So, I am one clean gal and a little bit pruned up!
I did pretty good yesterday. Very tired yesterday and groggy. But I did go skate for one hour and went to church. People did comment that I looked tired. Hmmm, I must need better make-up or something.
I am going into town this morning. Usually I stick to afternoons, but hey, I'm up, I'm dressed, why not go now and get it over with?
I still need to make an appointment with Dr. Li. My meds are messed up and so is my heart rate and blood pressure. They are all over the place. No rhyme or reason. Much worse than usual. When I go to see Dr. Li we are also going to discuss the content of his referral letter to Vanderbilt Medical Centers Outpatient Dysautonomic Disorder Clinic (say that real fast twice!). Yes, I spoke to the clinic a little over a week ago and all they need is a call from Dr. Li, records and a referral letter then they will set up the appointment through his office. I know, sounds too good to be true!
Well, I better go for now.

Not feeling so well right now. Haven't felt real whoopy since Sunday. The atenolol is getting out of my system and I'm having increased frequency of high heart rates and taking more propranolol. It is a little disappointing because my blood pressures have been staying up quite nicely with the lower dose of beta blocker.

Tuesday, Sep 6, 2005 - 09:41pm

Entry for September 04, 2005
Last night I felt my heart racing and started having some painful heart beats, so I went to my handy home med monitor and my heart rate was 105, just standing there. So, I took a propranolol, a different kind of beta blocker that I have for as needed use. It seemed to work within an hour or so.
This morning I am so very tired. Then at 9am, my trusty monitor goes off asking me to take my vitals (it is connected via telephone to Interim Home Healthcare) And I found out why I am so very, very tired this morning. My blood pressure is only 78/59!!!!!
Welcome back the rollercoaster of my health. Hopefully, I will improve by this afternoon.

Sunday, Sep 4, 2005 - 08:25am (PDT)

I am feeling pretty good today. I have been feeling so much better in the mornings the last few days. It could be the baths or the fact that my beta blocker was decreased a week ago. The beta blocker while reducing my heart rate, which is a good thing, also decreases my blood pressure, which is a bad thing.
Today my blood pressure remains above 100. In the past when we have tried to decrease my beta blocker, the high heart rate and irregular heart beats and cp would force us to resume the bid dosing, but so far I have only had a few episodes which only last for a couple of minutes. So, if I don't need to increase my medicine I won't.
We are going to town today to buy groceries. Shopping is probably the hardest activity for me. We will see how I do. I usually am forced to ride in the wheel chair, especially at Walmart. I totally hate being in the w/c. (People always look at my legs and feet to see what's wrong). Standing is just so fatiguing, and you tend to do a lot of that when shopping. We will see.
I am going to finally get my pictures developed from my trip back home to Illinois in July. If they are any good I will scan them in and put them in an album on the main page. Yes, it's true, I am still fluctuating between digital and 35mm. They both have pro's and con's....
I slept well last night!!!!
I'm still waiting for another shipment from a vitamin company. I subscribe to a fatigue newsletter on-line and they suggested something called 5-HTP to help combat fatigue. So, I am anxious to try it as it is also supposed to improve your quality of sleep as well.
Well, it's off to town!
Saturday, Sep 3, 2005 - 08:25am

Doing pretty well today. Did not get a lot done but still felt pretty good at 7pm. Started getting tired after supper. 2nd bath in natural treatment today. BP 100/58 tonight. Still not taking second dose of beta blocker. Seem to be tolerating that pretty well.
No nap today, but I did rest.
Slept pretty well last night, thanks to the neurontin.
Hope I keep doing well. :)
Friday, Sep 2, 2005 - 08:51pm

I felt really good this morning, in fact, I had one of my "I'm cured" days. "I'm cured days" are when I feel so good, it's like I could never feel bad again. Well, I was cured until about 3pm.
Today I also started a new natural treatment. A friend of Dan's told us of another old friend of Dan's whose wife had a heart attack for no apparent reason, (sound familiar). She was responding poorly and they stumbled upon this product that she bathed in everyday. It had miraculous results. In fact, they were so impressed with it that they bought the rights to the product and started their own company and called it, "The Master's Miracle". So, as soon as the UPS man arrived today I was taking a bath.
We'll see. I know it sounds ridiculous, but I felt so very bad last week, I'm just desperate to get my groove back and get on with living.
Now, I'm really tired. I sure hope I can fall asleep tonight. It took me until after 1am to finally fall asleep last night, but at least I stayed asleep!!
I skated today for 1/2 an hour. I always feel better in the cooler temperature. I know it's bizarre.
Tomorrow I don't have to go anywhere, which is a good thing with the gas prices going so high.
Thursday, Sep 1, 2005 - 07:31pm