Today's blog post is especially for those of you who suffer from a mental illness with me, because today I wanted to give up, as I know you have too, countless times. Today, life was just too heavy, too pointless, too much trouble. One pain after another. One heartache after another and I know you know what I'm talking about. Laughing was too much trouble. Chin up was too much work. Why struggle to get through this crisis when there will just be another one waiting for me around the corner?
But then I realized something. I am not alone. You and I, we don't walk this road of mental illness by ourselves. We walk it with hundreds of thousands of others who also feel like their cries are going into a vacant sea of nothingness, that the pain of each and every heartache is falling on deaf ears. And because of those unheard cries, we need to pick ourselves up, take that next step, and HEAR THEM.

Let me tell you two things that stand out to me about my hospital stay a couple weeks ago. Two experiences amongst hundreds. The first one was my Auntie. Well, she's not my biological auntie, but in my heart, she's just as much my auntie as anyone could ever be. I had been in the hospital a few days and she came to see me. She walked in my room and the first thing she did was hold me and I wept. I was smelly and stinky and gross from not having showered in days, but she held me tight. She stayed for about an hour, she told me afterwards, but what I remember of her entire visit was that she held me and let me cry.
The second memory I have is that of the charge nurse. Sadly, I don't even remember his name, but anytime I would go into convulsions, I would curl into a ball and he would gently rub my side until the convulsions stopped. All he said the entire time was that it was going to be ok. That's all. No advice. No panic. Just a quiet touch letting me know it was going to be ok. And of all of the instances of that horrible experience, those two stand out as the ones that meant the most to me. Because of the one I felt the love of family and because of the other, I felt the love of a perfect stranger. Both gave me the strength to go on.
So if you don't have the strength to get up and go for yourself today, get up and go for that person who needs to know it's going to be ok. Get up and go for that person two years from now who thinks no one can possibly understand that roller coaster ride they are on, only to find out that you understand exactly how they feel because you've been there and you SURVIVED! We admire people who become seriously injured and overcome. Let's become those stories of inspiration ourselves. Let's be the paraplegic who teaches himself to walk again. Let's be the person with throat cancer who wins American Idol. Let's be the person with a mental illness who shows others what it means to hope again.

Pull me out!

Too much. It's all too much. I'm sinking deeper and deeper into the abyss and no one can pull me up. No one can pull me out. I thought they would help, but they didn't. They only made it worse.
Limbs flailing. Brain zapping. Heart aching. Nothing to do. Nowhere to go. What to do?
I seek the reprieve of sleep, but all I feel is anger. Anger and pain. And I want to give up. Oh, how I want to give up! But not tonight. Maybe tomorrow. Or maybe tonight. Why carry on? What is the point? I was strong. I laughed and praised and looked at the bright side and it got me nowhere but...here. And where is here? At the end of the life that I knew. At the end of all that was good and pure and happy. God help me! Where are You in the midst of this darkness? The doctors are supposed to know what they are talking about, but they don't. Instead, I am a guinea pig in a laboratory of guess work and I scream but no one hears. Test after test. Trial after trial and in the midst of it all, what? Pain. Oh, I know it's supposed to refine me. I know it's supposed to draw me closer to God, but tonight, it doesn't. Tonight, it does nothing for me except make me completely incompetent and useless. Could someone please let me out of this brain that has become my prison? Please someone let me out of here!!

The scoop

I thought I'd pop on here real quick and write a summary of what we know to this point. For those of you who don't know, I spent 7 days at Memorial Hospital last week, after my convulsions got so bad that I couldn't breathe at times, and was losing the ability to speak and swallow at times. There is so much I could write, but for now, I'm going to try to give a brief summary of the facts to bring everyone up to date.
The doctor at the hospital put me on Depakote for my convulsions (called convulsions and not seizures because even though they may look like seizures to us lay people, they do not present as true seizures). Depakote is also used to deal with depression, so they have me on it as an anti-depressant as well. They also put me on klonopin for anxiety, because the doctor said that with the overwhelming changes in my life right now, and all the emotions that come along with them, as well as the renewed energy that the Depakote should bring, with my history of anxiety, my risk of becoming suicidal is elevated, and the klonopin should reduce that. Currently, those are the only two medications I am on.
My EEG results were non-conclusive. The first MRI I had showed a cyst on the brain, as well as several areas of demyelination. The second MRI showed no cyst, but still showed the lesions. Because my symptoms closely match (as in, are nearly identical to) those of my older sister Katie, who has had MS for 15 years, and because of the lesions on my brain which are a common indicator of MS, the hospital doc highly suspects that I have MS. I have an appointment with my neurologist tomorrow to look into that more and do further testing. The hospital doctor said that if the neurologist doesn't take me seriously (as is often the case with patients with MS), I need to request a referral to a different neurologist.
There was some talk while I was at Memorial Hospital of sending me up to San Francisco, but for now, we are going to try to get as much done locally as we can. There may come a time when I will need to see a specialist in San Fran, but right now, we're trying to take it one step at a time and not jump through unnecessary hoops.
Because of my convulsions, the DMV has pulled my license, so I am unable to drive and probably won't be driving for a very long time, if ever again, which means drastic changes in our lives. Currently, the kids are in a school out of district. Because they only have six weeks of school left, we will do what we need to do to let them finish the year there, but next year, we will need to get them into a school that is on our bus route and/or within walking distance. We have not told them this yet because we don't know exactly what our plan is. Our apartment lease is up June 30th, and we are looking at moving somewhere closer to a school and to some of my friends, because I'm definitely NOT a home body and the thought of being stuck at home for days on end with no one to talk to makes me want to weep.
Anyway, there is so much going on right now, but I hope that gives some clarification to those of you who were asking. Please feel free to ask any questions you may have. I will try to update more after my appointment tomorrow morning.

EEG and MRI

I slept fitfully last night. I was too cold to sleep soundly, but not cold enough to actually wake up and get another blanket until around 5am. After the warmth of the bed hit me, so did the overwhelming emotions of my journey to this point. I grabbed my fluffy cat from the end of my bed, buried my tearful face in her soft purring belly and suddenly the world didn't seem quite so bad. Unfortunately, I was not quiet enough in all of this and woke up Jason, who allowed me to cry and vent some more. As I fell back to sleep a little while later, I knew I was well loved.

Jason got up with the kids and they let me sleep until 8:30, at which point my alarm went off so I could get ready for test one of the day, EEG. I didn't take my xanax because I didn't want to minimize anything they might find on the tests, so my tremors were strong this morning. I walked into the kitchen to get breakfast, opened the dishwasher to get out a bowl and stared at that bowl for a good minute or two, although it felt longer. I knew I wanted the bowl but there was no way I could get the instructions to grab it from my brain to my hand. So I stood there and stared until my hand decided to obey and I was able to grab the bowl and continue on with breakfast. I showered, grabbed a few things I was going to need, then laid down on the living room floor, waiting for Auntie Kay to come pick me up.

She arrived around 10:30, we swung by the storage to swap a couple things with Sonja and then we were off. I was tremoring some on the way to Sutter Gould, but was able to walk myself in. We walked over to the lab, where they told us we needed to go to the second floor and as we headed to the elevators, that's when it hit. I knew that I didn't have long before a big spasm episode was going to hit. I concentrated really hard in the elevator so I would start shaking everyone in there and as soon as we got out of the elevator, I told Auntie I needed to sit down. I tried to grab on to her to stabilize myself enough so I would create a scene, but it didn't work and I knew I needed to lay down, so I hit the floor and started convulsing.

A woman approached us. She looked like she was just another person waiting in the wait room. She said her aunt or sister or some relative of some sort used to do "that" (what I was doing). Auntie told her she hoped that they were able to figure out what was wrong with her, and the woman said: "Yeah. It was a brain tumor." I couldn't help but laugh. Why, thank you, Ma'am! On that positive note, you have a wonderful day! Lol!

I curled into another spasm and the room filled with people. I heard them call a code, call for a gurney, try to start an IV. I pipped up when they said they wanted to transfer me to the hospital and told them I did NOT want to be transported, that I was completely lucid during the tremors and that I did NOT want any medications that would interfere with the EEG I was scheduled to take in a few minutes. The neurologist I saw on Tuesday came over and I don't know who said what to whom, but they decided to give me some attivan, do the EEG and then move up the time of my MRI so they could do it while I was still under the effects of the attivan.

They took me into the EEG room, where some lady gave me a shot of attivan in the rump. OUCH!! That thing HURT! But then I felt very, very relaxed :-). The tech put a funny looking cap on my head and hooked me up to some machine that measured my brain waves. I had to do most of it with my eyes shut. I had three times when the spasms got bad again. The first one was when she made me breathe in and out deeply, for three minutes. It mimics exercise to the brain. Man, was I spasming with the one! Then she did the blinking lights test. That one made my body squirm. And then the third one was a surprise to me. I was just sitting there. She told me I could even sleep if I wanted to. I just had to sit there for twenty minutes. With about 7 minutes left, my body was NOT happy! It wanted to jerk and jolt about. I tried to concentrate really hard to keep my head from moving because she said that messes up the results if the head and neck move too much. I was so glad when she told me time was up!

Then onto the MRI. They did squeeze me in a couple hours early, so into the machine I went. I was worried that I wouldn't be able to stay still, but it wasn't a problem. The noises were annoying, but nothing terrible and now I'm home.

The techs obviously couldn't tell us anything and we have no word on when to expect the results, so we plan on sitting back and enjoying this beautiful Easter weekend to the best of our ability. Thank you to all of you who have been praying. Please continue to do so. We couldn't have made it this far without God's strength. He is our Rock and our Comfort in time of need. Blessed be His name!

We will continue to update here as we find out more.

Today, I'm angry because anger is easier than pain.

CITP

I decided to tackle Church in the Park today. I'm a little (ok, VERY) nervous about it. My biggest fear is, well, actually, I have two big fears. The first one is that I will have a full on body convulsion (not a seizure per the doc, since I'm lucid the entire time, but it looks like one). I'm worried I will have one of those and someone will call 911. No matter what you tell people, when you have over 200 people in one location and something like that happens, someone is bound to pull out their phone whether we ask them to or not, so I'm praying I can avoid that.
My second fear has more to do with my pride. I'm worried about what people will think. I'm worried they will think that I am going to the park to get attention, so people can dote on me and that I should just stay home and not cause a ruckus. I have pondered whether or not to go back and forth and back and forth, but ultimately, what won out for me is that one of the things I value the most about CITP is that it is a come as you are church. Today, I'm physically a mess, but I want, I NEED to be with my family. So I'm trying to put on my big girl panties and not give a darn what people think, not care whether they look at me as an attention seeker or not, but to be honest, I am terrified of what certain people will think, which just goes to show that I'm still a work in progress, with a need for lots and lots and lots of progress.