<![CDATA[Mostly Risible]]> http://www.mostlyrisible.com/index.php/weblog/index/ en Tue, 03 Jan 2012 13:24:00 -0500 <![CDATA[Happy New Year!]]> http://www.mostlyrisible.com/index.php/weblog/comments/happy_new_year2/ http://www.mostlyrisible.com/index.php/title_permalink=site/happy_new_year2/#1721

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. ]]> Tue, 03 Jan 2012 13:24:00 -0500 <![CDATA[I’m not amused]]> http://www.mostlyrisible.com/index.php/weblog/comments/im_not_amused/ http://www.mostlyrisible.com/index.php/title_permalink=site/im_not_amused/#1720
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. mad ]]> Tue, 25 Oct 2011 21:24:00 -0400 <![CDATA[Today I’m thankful for medical insurance]]> http://www.mostlyrisible.com/index.php/weblog/comments/today_im_thankful_for_medical_insurance/ http://www.mostlyrisible.com/index.php/title_permalink=site/today_im_thankful_for_medical_insurance/#1719
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. ]]> Wed, 05 Oct 2011 19:51:00 -0400 <![CDATA[To be fair to previous doctors..]]> http://www.mostlyrisible.com/index.php/weblog/comments/to_be_fair_to_previous_doctors/ http://www.mostlyrisible.com/index.php/title_permalink=site/to_be_fair_to_previous_doctors/#1718
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, wink

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.]]> Sat, 24 Sep 2011 19:08:00 -0400 <![CDATA[So.. About that cardiology visit..]]> http://www.mostlyrisible.com/index.php/weblog/comments/so_about_that_cardiology_visit/ http://www.mostlyrisible.com/index.php/title_permalink=site/so_about_that_cardiology_visit/#1717 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...
]]> Sat, 24 Sep 2011 18:56:00 -0400 <![CDATA[OK, the cardiologist has moved up on the priority list]]> http://www.mostlyrisible.com/index.php/weblog/comments/ok_the_cardiologist_has_moved_up_on_the_priority_list/ http://www.mostlyrisible.com/index.php/title_permalink=site/ok_the_cardiologist_has_moved_up_on_the_priority_list/#1716
My dental stuff for this year will be finished in two weeks. I'm going to wait to finish up the last of it until I have more insurance benefits at my disposal. I'm going to postpone the jaw surgery until next year (if I decide to do it at all. Maybe I'll just eat soft food the rest of my life.)

Yesterday was a very strong reminder that I need to get back to the cardiologist. I've been meaning to do it for several months now, and even more-so after seeing the feedback from the sports heart monitor I'm wearing when I'm exercising. My heart rate is erratic and it's disconcerting.

I didn't want to go back to my previous cardiologist because he blamed me IN A VERY LOUD AND MEAN WAY for not listening to my body. He made me feel ashamed that I can't feel my body signals. I think that not feeling my body signals has been helpful with the pain issues, but I can't help it that I don't feel the tachycardia coming on (though I sure did yesterday!), and no amount of pointing fingers at me is going to change that. Doctors intimidate me and when I'm intimidated, I avoid.

I'm switching to BJ's cardiologist because he's done such a good job in fixing up BJ. BJ's only beef with him is that he harps on weight loss. That's fine with me since I'm actively working on that.

Anywhocares- my appointment is a week from Friday. ]]> Wed, 14 Sep 2011 20:04:00 -0400 <![CDATA[THE most frightening 20 minutes of my life]]> http://www.mostlyrisible.com/index.php/weblog/comments/the_most_frightening_20_minutes_of_my_life1/ http://www.mostlyrisible.com/index.php/title_permalink=site/the_most_frightening_20_minutes_of_my_life1/#1715
I'm getting toward the end of my mouth repair from the fall of 12/08. I hope so, anyway- though the dentist said we could see problems for up to five years.

Today I was scheduled for six crowns at a time- some new, some replacing old because the teeth were cracked underneath.

This required a lot of Novocaine (or whatever dentists use these days.) Within minutes of having my mouth shot full of Novocaine, my heart started racing and I started shivering uncontrollably. I started crying out of nowhere and worked really hard to stop myself. My whole body felt completely out of my control. It was HORRIBLE. I was trying to maintain my cool, but it was difficult.

The dental assistant called for the dentist and they stayed with me until the worst was over- about 15-20 minutes. He told me that the stuff they use has epinephrine in it and he used a lot of it today and then related it to the scene in Pulp Fiction where they jab a shot of the stuff into someone's heart to get it started. NICE IMAGE, Doc!

My heart kept going through cycles of racing after that. I was laying in the dentist chair the whole time thinking I should probably go to the hospital. I'm glad I kept my cool though because it did eventually become less and less horrible. I'm still having some issues, but it's better than it was.

The dentist said he won't be using that on me again, he'll use something doesn't have epinephrine in it, but is less effective . Right now I don't even care if I have ANY numbing stuff. I never want to go through that ever again.

Not to sound even MORE dramatic, but I think I've just had my first glimpse of what a heart attack might feel like. ]]> Tue, 13 Sep 2011 21:08:00 -0400 <![CDATA[In a New York Minute]]> http://www.mostlyrisible.com/index.php/weblog/comments/in_a_new_york_minute/ http://www.mostlyrisible.com/index.php/title_permalink=site/in_a_new_york_minute/#1713
I'm glad for the reminder, so I can say a prayer for those who lost someone or became horribly traumatized from the tragedy.

]]> Fri, 09 Sep 2011 18:47:00 -0400 <![CDATA[QOTD]]> http://www.mostlyrisible.com/index.php/weblog/comments/qotd4/ http://www.mostlyrisible.com/index.php/title_permalink=site/qotd4/#1712
"In life, think of mean people like sand paper. They may scratch you and hurt you, but at the end, you come out smooth and polished and the mean person is just worn and ugly."
~Unknown (until I figure it out!)


I suppose you could think of hardships in life that way as well, in which case I thank the hardships I've had because I feel pretty dadgum polished. ]]> Fri, 09 Sep 2011 18:22:00 -0400 <![CDATA[Currently reading…]]> http://www.mostlyrisible.com/index.php/weblog/comments/currently_reading/ http://www.mostlyrisible.com/index.php/title_permalink=site/currently_reading/#1711
My favorite quote today:

Before enlightnment, chop wood, carry water. After enlightnment, chop wood, carry water.
~Zen proverb


Aside from making me giggle, this quote reminds me to stay humble, and can be applied to any sort of education. We're here on earth to learn, but being enlightened (I'm not claiming to be enlightened, by the way) doesn't make me any more special than the next guy. It just helps me to understand circumstances differently than the average Joe. I still have to trudge through life just like everyone else.

Bummer, dude.]]> Wed, 07 Sep 2011 05:38:00 -0400 <![CDATA[QOTD]]> http://www.mostlyrisible.com/index.php/weblog/comments/qotd3/ http://www.mostlyrisible.com/index.php/title_permalink=site/qotd3/#1710 ~Dalai Lama]]> Mon, 05 Sep 2011 18:11:00 -0400 <![CDATA[When the two selves became one]]> http://www.mostlyrisible.com/index.php/weblog/comments/when_the_two_selves_became_one/ http://www.mostlyrisible.com/index.php/title_permalink=site/when_the_two_selves_became_one/#1709 The confidence game, how to bring out your inner hotshot." If I had any more confidence, I'd be annoying (probably already am, but too bad!) I was just interested in the article to see what it had to say about the topic.

I was able to tick off all of the indications of confidence (with confidence, even!) as I read through the article. Yep, I use furniture "wrong" in an office setting; I can maintain uncomfortable eye contact, etc etc etc.

Not too many years ago, people in the office would have never recognized the "Lori" outside of the office. If I were to put myself on a confidence scale of 1-10 back then, I'd be in the negative numbers. I had no confidence at all. Yet at work, you couldn't faze me. I was (and continue to be) NOT TO BE MESSED WITH.

I've always known my value at work. Outside of work, I had no value (in my head).

I can't really give a rhyme or reason about when the two selves fused, but I'm glad it happened. I'll admit that every now and then the old self peeks in, but it's rare and I'm able to shoo her away.

I think the best part of the personal emotional growth is that I can tell people, "don't tread on me". If they choose not to listen, then I choose not to spend my time with them. Who knew it could be so simple? Life is too darned short to be a welcome mat.

Back to the article... It pointed out that practicing the body language and speaking styles of a confident person, even if you don't feel that way, helps your brain to retrain its way of thinking. I've found that to be true. One of the benefits of "pretending" to feel confident is that you can see how others react to it. It's a lot better than you'd imagined, making it easier to not pretend the next time.

I suspect my hesitance to assert myself in the past was because I abhor aggressive people. It took a while for me to learn that you can be assertive AND kind at the same time. To me, that means I will not tread on others NOR will I allow others to tread on me. Pretty simple if you think about it in those terms.

Anyway, it's a good read if you need some confidence booster tips. It's also a good read if you want to know if you're in the right track. tongue wink

]]> Mon, 05 Sep 2011 17:20:00 -0400 <![CDATA[QOTD]]> http://www.mostlyrisible.com/index.php/weblog/comments/qotd2/ http://www.mostlyrisible.com/index.php/title_permalink=site/qotd2/#1708 People take different roads seeking fulfillment and happiness. Just because they're not on your road doesn't mean they've gotten lost.
~H. Jackson Brown

I love this quote, and I'll tell you why. I love having discussions with people who aren't out to convince me to change to their point of view, but are just to help me to understand why they think the way they do. I really do enjoy having conversations with people who have a different viewpoint than mine, because I'm always interested in what makes people tick. I like to study people. People are so interesting, aren't they?

Who knows, I might learn a thing or two but rarely do I have a conversation about a topic that I haven't already thought through at some point.

Let's face it. I'm 51 years old and have pretty much thought through and made up my mind on all of the important stuff. rasberry

I'll let you in on a little secret: Just because I'm silent, it doesn't mean I agree with you. It means that I'm studying you.... in fact, my silence often indicates that I disagree with you, but I know that I’m talking to a “right-fighter” and my input will be perceived as arguing. Arguing isn’t very much fun to me, so I avoid it.

BJ and I couldn't be any different in the way we think about many things and what our core beliefs are, but I still respect his right to his beliefs and love the guy no matter what his beliefs. A big gap is our belief in life after death and a belief in a larger power than ourselves. I love it that we can talk about this stuff and end it with an agreement to disagree. Voices are never raised and respect of each other's intelligence is always part of our discussions. I guess one of us (probably him... ha ha ha) will find out that they are wrong after they take their last breath. I hope that I'm not the one who is wrong, but I'll find out sooner or later. I suppose that if I'm wrong, then there won't be any "finding out" anything. I'll simply end. It sounds kind of like waiting for retirement to come and once work ends, I lapse into a coma. What a drag!

I could even apply this thought process to the many people in my life that smoke. I HATE it that they smoke, but as an adult it's their decision as long as they don't do it in my house. I do things that other people might not agree with, but I'm an adult and it's my decision. Hmmmm... sounds like I'm pontificating.. but I'm just trying to make a point.

I learned a really good lesson this week, which is why I've posted the quote. I'm not going to get into the details because this blog is public, but will share that it had to do with one of my sons. I called him last night and a great conversation came out of it. What a great kid I have. He knows what he's doing, and knows what's best for him. I must have done something right with that kid, that's for sure.

Or perhaps, he was just born to be awesome no matter who his mother is (most likely the case.) ]]> Fri, 02 Sep 2011 18:18:00 -0400 <![CDATA[Annnndddddd…… We’re back]]> http://www.mostlyrisible.com/index.php/weblog/comments/annnndddddd_were_back/ http://www.mostlyrisible.com/index.php/title_permalink=site/annnndddddd_were_back/#1707
I'm back up to 2+ miles a day, but I'm talking it much slower and gentler (is that really a word? More gentle, is weird too.. So I'm sticking with gentler!)

I'm still in pain, but not NEARLY as much as when I re-injured the tendon. It's down to a level 3 or so from a 6-7. I'm stretching before and after and I think that's the trick. No real need to warm up at this point since I'm not walking very fast. For example, Einstein and I walked for almost 90 minutes and only covered 2.5 miles.

I stop walking when the pain level starts to go up (or try to... Sometimes I'm kind of far from my car). When it hits 5 or so, I stop. The pain never goes fully away, which is a drag. I'm learning to live with it, just like my face pain. It is what it is, and I just need to grin and bear it (or become an opioid addict, which I can NOT do AND run a successful business.) Maybe I'll save that for retirement. Ha ha ha ha ha.

Anyway, this was meant to be a happy post! I've lost two pant sizes, and that makes me crazy happy. I went through my closet and rearranged the 20+ pair of jeans into sizes... Smaller in the bottom, larger on top, so I can continue to pack up the jeans as I get smaller and have "new" jeans to wear at my fingertips.

Einstein has lost 2 lbs! I weighed him at the vet on our way home from the White River walk. I've taken him off the low fat food and put him back on regular food. I think he's pretty happy to be off that stuff!

I hope I never ever take walking for granted again. ]]> Mon, 29 Aug 2011 19:49:00 -0400 <![CDATA[Puzzle me this]]> http://www.mostlyrisible.com/index.php/weblog/comments/puzzle_me_this1/ http://www.mostlyrisible.com/index.php/title_permalink=site/puzzle_me_this1/#1706
Eventually, I downloaded the pay version (big deal, it was only 3 bucks!), because I've found it to be a wonderful way to relax at night. What I really like about it is that I can use any picture I find on the Internet or out of my personal photo albums to create puzzles. Friends, beware, many of you have turned into a puzzle, especially if there's an animal in the picture with you! I can also make them hard or easy to do, depending on the brain cells I have left at the end of the day.

I now look at almost every picture as a puzzle, which is kind of fun. I find at least two new pictures a day (typically more than 10) to fill my puzzle bucket. I think I look at pictures differently now. I am drawn to the more intense photos in a way that I've never been before. I think that's kind of neat that something so simple has changed the way I look at things.

Much can be said about many things in life, I guess. ]]> Sun, 28 Aug 2011 20:46:00 -0400