Sick of hospitals

Thursday I came home after 6 days in the hospital. My seizures were occurring 3-4 an hour and becoming increasingly violent. After DH being sure I was not breathing, he took me to the hospital. Seizures in the ER confirmed he was right; with each one, the monitor alarms went off. My 02 sats dropped to the 70's and instead of my heart rate skyrocketing, it plummeted. And long story short, I was admitted for 6 days.

I came home on another AED (seizure med). DH thinks they're helping a bit. I'm still seizing but not nearly as often.

I have a clinical trial check-up Tuesday morning and pain man appointment Friday afternoon. My mom is here from out of state so thankfully she can drive. I am anxious to tell Pain Man how his staff refused to give him messages about my situation not once but three times.

My pain control is not doing much at all. I dread getting up, sitting down, getting in and out of bed, whatever.

I don't know what to do any more. I am exhausted, and tired of relentless intractable
pain.

Here's a pic of me a few days ago in-patient, waiting for yet more imaging.

My 15 minutes of fame

Good morning all! It's 2:44 a.m. so I guess it's morning right? LOL!

You probably remember that I won a makeover contest hosted by the local NBC channel. During the news broadcast Friday evening they cut to the salon where they sent me for hair cut/style, makeup, and manicure, checking in with the anchor with me on how things were going.

The introduction of me and my family they filmed on Wednesday is now on their website, and the final clip from last night at the salon is available as well.

So, since you know my story already, I thought I'd share so you can put a face with the name!

http://www.kvoa.com/global/story.asp?s=8303757

I won a wonderful prize package and still can't believe it. My friend Kristina was there for it all and I'm so glad! She and her husband (who, along with friend Annette took turns taking care of our children so we could go to the salon) were so kind they sent DH and I to dinner afterward. DH was at work during most of the makeover and was unable to be there, but thankfully they let him off just a little early so he caught it live on television.

My hair feels fabulous, my nails are awesome, and I feel so blessed! The whole evening was such a wonderful reprieve from the nightmare of the last few years.

My baby boy's birthday

My baby boy is 7 years old today. This is the little guy who fought with all his might against being born! He resisted the induction meds pumped into me for 24 hours before I was sent home...with him still residing in his momma. He was quite comfy in there and no wonder. Another week later we discovered the hard way that this was no little baby in there but a 10 pound happy boy!

Due to suspected pneumonia he was rushed off to NICU immediately to stay for a few days of IV antibiotics. He didn't give as much as a whimper, and was adored by the NICU staff. When I was finally able to come see him many hours later, I was greeted by his own RN as well as the RN's of several other babies. They said they wanted to meet the mom who delivered "the toddler" and shared their plans to discharge him with a shaving kit.

He needed an oxygen hood but none in the NICU would fit him. They finally dug up a king-sized one out of a storage unit; they said most NICU babies have their entire body inside of it.

Not my boy. He was so big only his head fit in!

You've come a long way, baby!

Day by day

Things around here haven't changed. DH had to do a digging sternum rub for 15 seconds straight yesterday morning before there was any response. I don't know how long I had been unresponsive before he saw me.

This isn't a typical case of seizure disorder. Having uncontrolled meningitis for 9 months left me with arachnoiditis, a permanent, incurable condition causing intractable pain. All my brain knows how to do is grow scar tissue, around the clock 24/7. Every surgery increases the rate at which it grows, which is why my problems have no cure or treatment.

My NSG team strongly suspects the scarring that has been taking over my brain the last couple of years has now reached my hippocampus, explaining one of the types of seizures I've been having, the ones I've been having 3-4 an hour for the last couple of months. I don't know yet where the convulsions-type are originating from yet, since none of the local docs are calling me back with recommendations for local help.

I've been on pretty much all the AED meds already, since they're typically also used for HA and/or neuropathy as well. I've usually taken 2 at a time, though they've been switched around periodically. I'm on 2 at the moment and as usual, in large dosages of both.

Obviously they aren't helping.

This blog has the ability to leave comments or send emails. If you have something to say about this, please say it to me and not leave me as the object of discussion amongst yourselves. I don't like being the focus of what really feels like gossip. I don't think most people realize how much that hurts, and I don't need or appreciate it right now.

To all of those who have written me with thoughts, prayers, recommendations, suggestions, and advice, I appreciate it more than you now! Even those who write to say they don't know what to say but they're there, I understand and it means a whole lot just the same!

The "big one"

After scaring the daylights out of my husband last night by going into full-on forceful convulsions and beating my keyboard with my fists during so, I talked to a good friend who is diagnosed epileptic. She advised to take notice of any patterns that may indicate precursors to the seizures.

It was then I realized a couple hour before the "big one" (what am I, an earthquake??) I'd told DH I was getting hit with dizziness and nausea again. I also experienced another sudden onset of what I've been calling "the sweats." I will suddenly break out in sweat all over, though I am freezing cold. Yet it feels like my insides are roasting and just dying to break out. Even when I was a competitive dancer, I didn't sweat. But with this I suddenly just soak through my clothes and not a thing helps relieve the insane discomfort.

I've been having the nausea, the sweats, and the vertigo since shortly before Easter. I am beginning to believe these are my precursors for an oncoming seizure.

Today I braved up and texted my DH, asking him how often my regular seizures are, where I am found staring into nothing and being completely unresponsive for a couple minutes. His answer? 3-4 times an hour.

Wait. Did he just say per HOUR? You've got to be freaking kidding.

And I asked how long the "big one" lasted, which turned out to be a minute of him trying to get me to respond while I was thankfully in my recliner while I beat into it forward and backward but with no response still.

To me, I'd just been typing someone's response for the ASAP board, so why is my husband suddenly yelling at me and holding my arm?

I can't handle all of this right now. My only local doc is my pain man, he can't manage this, I need a NL. That's another story where I live, where if you're a young woman all the neuros seem to think you just need to be good to yourself and all your problems will magically disappear!

I can be good to myself till the cows come home and it won't change the fact I'm having seizures...more than I can even count.

I need a break. I don't think I can handle anything right now. Nothing. I still can't get sleep. My friend's heads up was right, post-seizure I do feel tired, and I also feel queasy. So why is it I still can't sleep worth squat?

My greatest apologies are to DH. He is scared to death, afraid to go to bed at night and leave me in the living room, afraid I'm going to stop breathing.

I've had several calls today and my emotions are on such overload I just can't take it. I wish I could crawl into bed and sleep for days. WHY can't I:

Unexpected news. Feelings of defeat.

Today, I met defeat face to face. It never had a name before. Yet on this day it intruded into our home, into our lives.

I've had some troubles the last couple months. Long story short, all of this has been due to temporal lobe seizures. Today I was diagnosed with epilepsy.

Suddenly everything makes sense. Sterling only today reported spotting me several months over the last month staring off into space not moving, asking me multiple times if I'm ok but me taking a couple minutes to answer, confusion, then angry.

I don't remember any of that. What I have noticed though, as have online friends, is that when we're "talking" that without warning I break a sentence and without missing a beat saying something completely unrelated, often nonsensical (sometimes in English, sometimes German, etc.)

Come to find out that my near-daily fight with nausea and vertigo, the passing out, all are signs of this kind of seizure, or pending onset.

Enter defeat. I don't know what to do with this.

The unexpected cost of pain control

I was remembering about my time in in-patient rehab following my time on the ventilator, learning to speak and walk again, how I fought pain meds tooth and nail.

Despite 6 ½ hours a day of intense therapy, I wanted to be a super-hero and take only the lifesaving meds: heart, anti-seizure, blood pressure, and the like. One night though, late, I was in bed on my side grasping the rail in pain, trying to keep my sobs to myself.

Eventually the two nurses who’d checked me in from the other side of the hospital (crying at the time) and spent a lot of time with me just talking, came in. Someone had gone by, heard me, and let them know.

They told me they’d seen others like me try to mask it, the pain, and it only served in less effective therapy, higher stress, & raised blood pressure, all because of being stubborn.

I told them (with my best "mask and fake you're ok" smile) that my family prefers to call me "bull-headed."

One of them said, not smiling, they call that "dead," because they see people stroke out & die from that stubbornness, directly. They wanted me to understand that I just can’t sit and suffer like that.

So I took the meds and haven't fought them since. I have never forgotten the lesson I learned that night.