Daily

And........ that's all I'm going to say about that. I don't do resolutions.

Cameron told me that The Walking Dead was having a marathon on NYE, and I've wanted to start watching the series, so I recorded it. BJ was sort of interested, but unsure because he doesn't like "scary" movies.

We started episode one in the evening and then something else (truth be told, I fell asleep and he watched something else.) The next day he said that he didn't plan to watch TWD anymore because he had bad dreams.

Here's the interesting thing. I also had dreams about zombies. In my dream, I was trapped in an airplane with other passengers until the zombies left. Instead of waking up in a cold sweat, I woke up thinking, "What an awesome dream! I wish I could finish it to see what happens."

I wonder what that says about me? Ha ha.

Since I last wrote, I've had an Echo, MRI and EEG

I saw the neurologist today to get the results from the MRI and EEG.

My brain looks fine. No tumors, bleeding, structural anomalies, etc. The EEG is abnormal. Apparently my brain shuts down (brainwaves stop) and then starts back up again. He said this happened several times during the EEG. So, I'll be wearing an ambulatory EEG for three days the first week of December. He doesn't need me to TRY to faint (thankfully), since he already sees abnormal activity. He just wants me to push a button and write down what's going on when I feel weird (or faint) to see if the body weirdness corresponds with the brainwave weirdness.

He said that this finding could be the difference between one type of dysautonomia and another. It could also mean that I have a form of epilepsy due to- or in addition to dysautonomia. It seems very confusing to me. I’ll have to bring BJ with me when I see him in December for the results of the ambulatory EEG.

I tried to find something about this on the Internet, but all I found was a guy that was able to stop his brain waves when he reached a very Zen place. Maybe I was feeling super Zen that day.

I see the cardiologist in November to get the results of the Echo. The only thing the technician said was that my heart rate was averaging 95 and asked me if that was normal. My normal resting heart rate is in the low 60's- so I can only assume that my heart was giving away the secret that I noticed I had a very cute and young technician and I was worried that he might see my boobies. Actually, I'm pretty sure it was because I had to lay on the arm that is still recovering from shingles. I'd be willing to bet that pain raises the heart rate.

Frankly, I'm ready to quit thinking about ALL OF this. True, I don't want to bonk my head anymore but I wish the process to get to the treatment phase was quicker and involved less doctor appointments. It will be nice to get to the bottom of all of my health issues, but I am one of those people who likes to put negative stuff away in a little box and not think about it. It's not like I'm declining in health or anything (well, except for the shingles- but I'm going to attribute that to Disneyland.) In fact, my fankle is great now, so I'm feeling more healthy with all the walking.

This is really harshing my buzz.

I just looked at the calendar of medical stuff I'm doing this month. Wow...

I met with the new neurologist yesterday. He agrees with the cardiologist about the dysautonomia diagnosis. He said that now he needs to get to the bottom of which form of dysautonomia I have because certain forms of dysautonomia don't respond to cardiology treatments (such as pacemakers.)

He got me on a bad day. We'd just returned from a four day trip to Disneyland and I was beyond exhausted. I was having trouble talking and he said, "Let's try something". He had me lay down on the table and wait a few minutes and then asked me questions again. It was much better, and I was able to answer his questions. That was weird, but he said that it was what he expected to happen. I guess I should hook up some sort of laptop so I can work laying down. Yeah! (I'm kidding, of course, but I thought that was really interesting!)

He is sending me for a two hour EEG next Monday, a brain MRI the following Friday afternoon and then depending on the EEG results he'll be having me wear a portable EEG device and will ask me to do what it takes to make myself faint. Not sure I know how to MAKE myself faint, but I do know what to do to lower my chances of fainting so I guess I'll stop. He said he wants to see what my brain activity looks like before I faint. He also is going to send me to a DNA lab after all the test results are back.

In addition to the neurological tests, I have a heart echo on the last Monday of this month. KaCHING!

I need to schedule a follow-up with the cardiologist, and will have the follow-up with the cardiologist the last week of October so I think I should have some solid answers the first part of November.

I'm not sure if there's a whole lot that can be "fixed" from what I've read, but who knows. At least I'll finally have a diagnosis, and maybe I'll give myself permission to take it a little easier on myself.

Nah- who am I kidding. I don't know the concept of taking it easy on myself.

I think that so many doctors got it wrong because I was seeing specialists for each separate issue. They only looked at the issue through their specialist glasses.

The lesson I've learned (and the one you should listen to) is that it's important to tell the doctor EVERYTHING that is wrong, even if it's not in their speciality. There are several things I've been diagnosed with via lab work that I don't mention typically because I'm embarrassed to have so many things wrong with me and thought that the specialist wouldn't take me seriously if they saw the list. I FEEL like a hypochondriac even though everything has been proven via blood work or MRIs, etc.

The last cardiologist was talking to me about something and I said, maybe I should have told you that I have "x" (an adrenal syndrome.) It's so rare that the endocrinologist tested me for it twice because he couldn't believe it. The cardiologist became angry with me that I hadn't disclosed it and accused me of not knowing what I was talking about.

So, before I saw the new cardiologist I sat down and typed out a list of EVERY.SINGLE.THING that I've been diagnosed with, and I think it was easy for him because the puzzle was right there in black and white. 

So, the lesson for me (and anyone reading this) was to not decide for the doctor what he needs to know based on his specialty. I'm still not sure that anyone except a cardiologist or neurologist would have put the pieces together, but I'm glad that now I know.

I'm wondering if growing extra stuff is part of this too. I'll have to ask. It would make sense since the bottom line is that my body doesn't regulate itself. Maybe it doesn't know when to stop generating bone and things like that too. I'm going to make a fine study some day,

I'm not sure how much better things will be even though I'll have treatment. The cardiologist was rather grim. The important thing is that they can do something about the fainting, and that's what matters to me most. It doesn't matter to me that I can't be "cured". I never thought I'd be told why I faint, so this is better than I had a week ago.

So it's OK that this is grim, because at least I know what it is. To quote Lady Gaga, I was born this way, so have learned to work around it for 50 years. But now when I'm tired, I will stop feeling guilty about it. And that is a good thing.

All I can say is, WOW I'm glad I changed cardiologists. You may recall that the last cardiologist told me that I had P.O.T.S (http://www.dinet.org/pots_an_overview.htm), tried some drugs on me (which put me in the ER) and then said to fix my problem I had to wear compression hose, prop up the head of my bed, eat a lot of salt and drink a lot of caffeine. He blamed me for not listening to my body and I never went back because I was embarrassed.

My new cardiologist spent an HOUR + with me today and said that P.O.T.S. is just part of the syndrome. I gave him a full list of all of my medical issues (liver, heart, head, adrenal, etc.) in a nice table with dates of diagnosis. He said that the form of dysautonomia I have is a full on malfunction of the nervous system and is both cardiological and neurological. He said that my previous neurologist needed to be replaced as did the previous cardiologist because they should have figured this out easily if they would have just spent the time asking questions. He said the previous cardiologist was right about eating lots of salt, and drinking lots of caffeine, so keep doing it, but the previous cardiologist was wrong in not investigating further.

He printed out a sheet for me to read about dysautonomia and said he'd give me 10 minutes to read it and that I would agree that it was just like checklist of all of the stuff I have wrong. He was right.

He then told me that he was sorry that I've gone all these years without a true diagnosis because this is an extremely difficult syndrome to live with and its easy to be misunderstood by friends and family. He said that my body doesn't regulate ANYTHING, including sleep cycles, moods, temperature, energy levels, etc.

Maybe now I can be honest with everyone and tell you that there are days that I pretend so hard that I'm feeling normal that it's exhausting and EXTREMELY unhealthy for me. I don't like being a drag, so I keep a lot of it inside until I feel at the end of my rope. I often feel that living alone would be much easier because then I wouldn't have to pretend. HOWEVER, BJ is stuck with me so I push those thoughts right out of my head.

So, moving forward, the cardiologist recommended a new neurologist who will work with him to find medications to help my brain regulate my body and he will work on regulating my heart. He said he wants to put in a little monitor under my skin that will monitor any abnormal heart rhythms that I'll wear for 2-3 years. He said that I'll probably need a pacemaker.

He even told me that losing weight was next to impossible for me because my system is so out of whack. It was nice to hear that because I have been walking at least 15 miles a week and eating next to nothing (coffee, two protein shakes and a banana would be my typical daily intake) and the weight has been stalled for a month. He said to not even worry about my weight. My blood pressure is super low as is my heart rate.

There is so much more to the conversation we had. He said that it's common for people with this syndrome to need to sleep for 14 or more hours at a time, which made me feel better about my sometimes excessive sleep. He said that I've probably been misdiagnosed as depressed, when actually it was just my brain not being able to regulate my emotion as well as my body needing excessive sleep. I'm glad I went off the anti-depressants. They never really did anything for me even though we kept upping the dosage.

I guess long story short is.. My body is just a big old hay wired mess, but at least now I know the reason behind lots of the stuff that my body does (even getting startled so easily.. Which drives BJ nuts...) This is also what happened at the dentist. My adrenal glands went crazy along with my heart.  Several things happened within my nervous system to make it the perfect storm.

He actually offered to call the neurologist from his cellphone in his office to get the appointment set up ASAP. I said I'd call on Monday. He seemed very intent in getting me "fixed", which feels like such a relief to me.

Word of caution to my family. This is hereditary so you might want to read up on it and talk to your doctors about it. There are many sub-syndromes of dysautonomia.

http://www.medicalnewstoday.com/releases/76785.php

I'll let you know how the neurology appointment goes...