Health

I saw my "normal" doctor (I have so many damned specialists!) today about more Valium. I was told by the neurologist who referred me to her that this doctor was not warm and cozy. She was all business. That was fine with me because I have plenty of hands holding mine.... Just need a doctor for what ails me.

Edited to add: Oops, I already wrote about seeing my doctor.

I've never seen this side of her. Probably because in the seven years we've been together, she's never seen this side of me. She said that Valium was short term (I knew that.. That's why I'm in therapy!) and because she thinks this situation will probably be long term, she doesn't want me to become addicted. I'm in complete agreement. Can you even imagine adding addiction to my list of issues? NO THANK YOU.

I haven't taken much of it so far. Lots of times it's just enough to know it's in my cupboard just in case I've had a particularly bad panic attack after a phone call.

Have I mentioned that I'm having an automatic reaction to the phone ringing? I'd turn it off, but I'm trying to run a business here.....

Anyway, she put me on anti-depressants to help support the underlying CONSTANT state of stress. Crossing fingers that it works.

I'm not a 24 hour mess, by the way. I try to get it all out before the hubs comes home. I couldn't imagine having to worry about what sort of wife I'm coming home to every day.

Also had my second therapy session with the new therapist. I REALLY like her. She used to treat abused kids and other stuff that is all part of the psychological makeup of yours truly. I probably will never fully disclose everything here. Just part of the layers.

My therapist told me today that she thought about me all week because she can't believe all the stuff I'm dealing with, especially considering the "layers". I walked out of there with my head held high because she said that I'm the definition of survivor. I really needed to hear that, especially from a professional.

We talked about the relationship that ended a couple of years ago that I thought would destroy me. It didn't. I now refer to that relationship as someone who died, because it's just easier to explain. I spoke with a Hospice counselor (one that I'd worked with in my volunteering days) back when it first happened, because i felt like I could no longer handle volunteering for grief and bereavement. I was too afraid that I'd cry at inappropriate times. She said that what happened is actually more difficult to work through because that person still exists and it's like a carrot dangling in front of me.

The counselor today said the same thing.

I think that the mere fact that I'm willing to write again, come what may, means that I've given up on that relationship.

Layers and layers and layers. I thought I'd worked through a lot of the childhood trauma over the four times I've sought counseling in my adult years. My counselor today said that my reactions to situations are cellular and deep, especially when it comes to my siblings. I was the oldest and I put myself in the position of protector. That's a very hard role to give up. It's a role that I will work VERY hard in giving up.

I'm thankful that I sought counseling before I developed unhealthy relationships/boundaries with my sons. I'm also thankful that I was at my best self when I married the hubs, because that relationship remains good and strong. It had/has a good foundation and I have no doubt that will continue, especially now that I'm allowing him to see me at my most vulnerable self. I didn't give him enough credit for his ability to support me in despair (I know, drama word- but that word fits like a glove.)

I'm going to be OK. I feel it deep in my soul. I have such amazing friends, kids, family (admittedly cobbled together family in some cases!) and husband. I feel loved and cherished. I'm taking that and running with it.

I've alluded to a lot of stuff on Facebook, but not come out with the story because my loved one and I share some common friends. Those friends know nothing about my blog, so I'm comfortable in writing about it here. If you're my friend on FB, then you must be so confused!

Sometime around the 3rd week of January, my loved one had a psychotic break. This has never happened to him before and I've never been around psychosis before, so all of this is very frightening and stressful.

I didn't understand the true depth of the dilusional thinking until my birthday (01/31). He was picked up by the sheriff's office and one of his neighbors had the whole thing on speakerphone for me to hear. What I heard will be forever seared into my brain, "Happy birthday Lori, I did this all for you." over and over again in a voice that I hardly recognized.

From that point to today (and probably ongoing for quite some time), my daily life has consisted of a series of calls from a manic and/or angry loved one (angry because I wouldn't do the things he'd asked me to do, like hire an attorney to get him out of the various psych holds), his angry neighbors who have my phone numbers (home and cell), and various hospitals who have my loved one in a 72 hour hold (if that long.) My daily life has also consisted of trying to take proactive measures in getting help for my loved one.

On top of everything else (I'll backfill as time goes on, but suffice it to say that I've suffered a series of losses in the last two years that I haven't dealt with properly), I've been running my business and trying not to let ALL OF IT ruin what I've built. I have people who work for me and count on me to provide an income.

I'm taking proactive measures in self-care because I've had many very fragile moments. I can't allow myself to go down the rabbit hole, though it feels that I've been circling that hole for a while. To be honest, I started circling that hole about two years ago but have forced myself to remain afloat. Right now, self care consists of weekly therapy (today is my second session), Valium (weeeeee!), and pushing back a little. Or a lot....

The people-pleasing days are over, my friends.

I hope.

Two weekends ago, I had a seizure. All of the symptoms from the 2007 head bonking incident are present and accounted for these days. I'm walking like a drunk, falling down and am having problems forming sentences. I'm not completely back to that point In time because as you can see, I CAN write and unless I'm in an acute stress (for example right after receiving a call), I can speak intelligently. I knew after that seizure that my body/brain was overload and I needed to do something immediately to take care of myself.

How many years have I been writing in my blog that I need to learn self-care and that I KNEW the lessons would be worse and worse until I finally "got" it? I think you're witnessing the brick wall tumbling down on my head and I have no choice but to care for myself.

I keep reminding myself that if I don't take care of myself then I will be taking down many people with me who don't deserve that. I see how one person's actions can cause a catastrophic chain of events. I don't want to be that person.

I realize catastrophic is a very dramatic word, but it's the right word in this case.

Yesterday, I received a call from a hospital in NYC. My loved one was there and it was immediately clear to them that he needed help. How he got there from where he lives is anyone's guess. For the first time in six(?) weeks, I feel a teeny-tiny bit hopeful that this is where he'll get the help he needs. I've told the doctor that my loved one is extremely smart (it's in the genes!) and told her everything he'd said and done up to that point. I wanted her to have full disclosure in case he tried to act "sane". Apparently he can appear stable enough when he needs to, in order to get out of a hold.

I don't want my loved one in that scary place all by himself, so along with the disclosure comes a lot of guilt. I'm not going to share the delusions here, even though I know that this is a safe place to post, out of respect for my loved one. If I thought that he was just a happy nut, I wouldn't be so passionate about getting him treatment. Unfortunately, the situation is well beyond "oh, that's just my nutty relative."

So, my immediate job in therapy is to find a way to let go of the guilt and responsibility. Then I'll work out the other stuff.

Wow, it feels good to write honestly again.

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 The Hubs 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.