Daily

I was reminded by family a couple of days ago that calling, or even accepting phone calls from my loved one could slow down his progress toward wellness.

I think this is going to be the hardest thing I've ever had to force myself to do.... Not call to reassure him that I'm out here loving him and that he's not been abandoned.

I've heard several people tell me that he feels abandoned, and I think that's a HUGE hot button for me. Here's something I'll bet you've already figured out- I have abandonment issues. Ha! Raise your hand if you're surprised.

I'm guessing all hands are down.

As I thought about my last conversation with my loved one, it was crystal clear to me that talking to him is a no win situation for him, or me for that matter. If I tell him that what he's saying makes absolutely no sense, he will perceive me as the enemy getting in the way of his mission. If I don't say anything, I'm pretty sure he perceives that as me agreeing with him.

When we last talked, I held myself hostage to his delusional thinking. I wasn't expecting to hear the same delusions I'd heard over the last few weeks, but they slowly crept into the conversation and then started speeding down the delusional path we've been walking the past few weeks.

At that point, I felt stuck in listening mode and didn't know how to end the 'conversation'.

After spinning the conversation in my head for a few hours, I started chastising myself for being a roadblock to my loved one's progress.

It feels like I'm probably THE WORST person to be placed in this situation because of my OWN issues. That tells me that the situation is all up in my face for a reason.

Sitting back and looking at it from the outside, if that's even possible, I can clearly see that this situation is testing my limits. When limits are tested, there are lessons to be learned.

Here's the thing.... Based on conversations we've had, it's clear that he believes he's talking to people that he's not really talking to. I've been asked (and stupidly agreed) to contact several people who he believes he's been in contact with, who hold certain bits of information. Not one of those people had any idea of what I was talking about and haven't talked to him in some cases years.

That should tell me that he probably doesn't remember our conversations the way they actually went down. I need to continually tell myself that calling him is more for ME than it was for him. It makes ME feel better to tell him I love him and am here for him, as I've always been.

I need to do what I did when I felt like crying while involved with a Hospice family. I had to force myself to not cry (I have loads of tricks), because crying puts the other person in a position of feeling like they need to comfort you. It's MY place to comfort them.

Taking that same logic, I need to remind myself that if I truly want my loved one to get better, I need to step away from calling him or even trying to find out where he is. I'm not helping him. I can only harm him. I need to force myself to do the opposite of what comes naturally to me.

My loved one told me that I could call him today if I haven't heard from him between our last call and today. I'm becoming more and more anxious as the time rolls on. I'm worried that he'll feel abandoned, but at the same time I know that calling him is wrong.

I feel as if my heart is going to beat right out of my chest every time the phone rings because I know that I'll be placed in the position (in my head) of abandoning him if he calls me and I don't answer. To say it is painful, is an understatement. There is no "right" thing to do in this situation, and plenty of wrong things. I'm pretty sure I fall in the latter category.

I write WAY too much about health here. It does not consume my every waking moment because I do my best to ignore whatever is going on. It does me no good to focus on something I cannot change. I've resigned myself that the dysautonomia will continue to affect my life in negative ways until the day I die because it's not something that can be 'cured'. It's all about managing whatever is going on at the time (thus the groovy head gear I'm wearing at the moment.)

I mentioned a couple of days ago that my doctor put me back on antidepressants to help me through the 'stuff'. I've been on it since Monday and each day the teeth grinding and jaw clenching got worse and worse. I'm pretty sure I've mentioned in my blog here especially in the beginning after HEAD BONK 2007 (ha!), that I was grinding my teeth and clenching my jaw during the day (and night, but I had a mouth guard for that) and it was a constant conscious effort to make it stop during the day. I even bought a mouth guard to wear during the day. Glamorous! Glad I work at home!

In fact, here I am grinding and clenching as I write this. Arrrgh!

It was annoying at best in the beginning, but after FACE BONK 2009, the one in which I broke all those bones on the right side of my face, it was a real problem because my jaw didn't heal properly and my cheekbone is shattered. Good thing I have a chubby face or I might scare someone. I've seen the CT scans. It's painful just to chew for long periods of time, so it's easy to imagine what this grinding and clenching is doing to my poor face.

All this time, I attributed the teeth grinding and jaw clenching to HEAD BONK 2007. When in fact, it appears that it was the antidepressant all along. The neurologist put me on Celexa right after I bonked my head in 2007 so it was easy to assume the grinding and clenching was due to the head injury.

I weaned myself off the Celexa and was completely off it by September 2011. I took for granted that I wasn't clenching or grinding anymore because, again, I try to ignore stuff that bugs me.

Starting day 3 into the new round of Celexa, I started grinding and clenching again. The right side of my face feels like it's on fire from the stress on my jaw. It's like my jaw and shoulder are now in a fist fight as to which hurts more.

Thankfully, I'm smart and put two and two together. Hey dummy! You're grinding and clenching again! And guess what? You haven't been doing that for almost six months. Hmmmm...... what is the common denominator here?

Stupid Celexa.

I emailed my doctor to let her know I think the Celexa is causing all of this. It looks like she concurs because as I was writing this, my doctor called and told me to stop taking it. She's putting me on Paxil.

I've never been on Paxil, so I guess I'd better study up after work. Or, maybe not. Maybe I should just let the side effects be a surprise.

I'm wearing all this gear on my head, but that's not all! I'm also sporting a fanny pack (sorry Sarah- I remember your reaction to fanny last time I wrote the word!) which holds the monitoring device.

Since I have a dog (oh!!!! he's so cute!!!), I'm wearing it all under a big shirt. The fanny pack thingee tends to gravitate toward the front of my body and I look about 7 months pregnant.

Lucky Hubs has been regaled with the sideways "pregnant pose" and the song, "Havin' Ma Baby" since he got home from work. I am, of course, laughing my arse off, but he doesn't seem to get quite the same kick as I do over this.

Doesn't he realize what a gem he married? I'm funny and I can sing!

I keep telling him that he's going to miss my singing/dancing/comedy show when I'm dead. He's not buying it.

That's me purposefully bonking my head against the wall.

I called my loved one today. I'd talked to him yesterday and he 'seemed' like himself, albeit drugged up. He's still in the hospital, thankfully.

Every day he tells me that he thinks he'll be out of there "tomorrow" because he's doing so well. Yesterday I asked him if he were released, would he continue to take the meds? He said yes, if that's what his doctor told him he needed to do.

Today was a completely different experience. He said he doesn't like how he feels on the medication and thinks it's hindering his ability to think.

...boy do I know how frustrating it is to not be able to use your mind when you're so used to stuff being immediately available.

I was hopeful yesterday, but after about 15 minutes, I could see that he still firmly believes everything that got him put there in the first place. He DID say, however, that he trusts his doctor a lot- but thinks his doctor is trying to mess with him. I decided to not ask what that means.

He said that he’s told his doctors that they can’t give family any information, and “don’t bother calling them.” He told me that he believes I was on a mission to get him committed and it pissed him off. I told him that I was NOT on a mission to get him committed; I was just doing everything I could to get him help each time he landed in the hospital. I reminded him that he was not himself and I've never seen this side of him before. I also reminded him that it was never me who called the police to have him hauled away. I just answered questions when doctors called me. I felt a moment of guilt- - because he was right. I WAS doing everything I could to get him help. I didn't lie though- I never did anything to place him in the various hospitals.

He now is telling me that he went to NYC just for me, because he knew they'd have good psych wards there. Every day the story changes. I told him that we are both adults and we need to quit protecting each other. I was getting tired of hearing “I’ve only done all of this to protect YOU”, "I've done all of this for YOU." It makes me feel horrible. Something I need to work through. I know in my head that this isn't true- it's just hard to make it stick in my heart.

I'm sure thankful I'm in therapy. That was one of the best decisions I've made in a long time.

After the seizure at the beach a couple weekends ago, I decided to quit putting of the ambulatory EEG. I really need to quit using the "I don't have time for this" excuse to take care of myself. Grrrrrr.

I am positive that I don't have epilepsy. Though what happens to me does look like a seizure, it doesn't have the same characteristics. I'm conscious the entire time and I'm aware of where I'm at. It doesn't feel like a brain thing- it feels like a body thing. My entire body tenses up and jerks and it all seems to radiate out from my abdomen. After it's over, I feel as if I've done a million sit ups. Hard to describe, but I'm sure I don't have epilepsy on top of the other stuff. No brain tumors either- so don't let your mind wander. I've had several MRIs since 2007.

Imagine if you will, having to drive in your cool Hummer looking like this:


I put my black hoodie over my head, but I ended up looking like a nun. I'll wait while you imagine it.

Done? Good. Funny, no? YES! Yes it is! I laughed at the idea that someone might think a nun is driving a Hummer the entire way home.

The Hubs, being ever so supportive, laughed at me all night. What a jerk! (I kid! I laughed too. It's FUNNY LOOKING!)

So, I'm sporting this little number until Friday late afternoon. I have to drive back and forth to the neurologist to download the information gathered. Trying to find a way to make it fashionable, is tough- so I'm not even wearing makeup. The cardinal rule for me for leaving the house has been broken at age 52.

True story- the technician told me to stay out of banks. I've worked in a bank and I was trying to figure out what sort of technology we have in a bank that might interfere with the results. That's when I had my DERP moment. She further explained that one of their patients went into a bank with this get-up and soon a bomb squad was surrounding the place.

I think if you saw the entire set up, you'd see why. I have loads of wires coming out of my head stuffed neatly into this bag that I get to carry around and sleep with. It definitely could look like a bomb.

I have the follow up with my neurologist next week, so I'll have quick answers.