DABDA

In one of my college courses, I learned the acronym for the five stages of grief: DABDA. Denial, anger, bargaining, depression and acceptance.  Currently, I sit at the first A. Anger. I am mad as a hornet right now. My denial stage ended Tuesday of this week when I tried to scale back on my meds, hoping that all of this would have just been a fluke, a bi-product of the antidepressants I had been taking or something. I cut back by only a third and that night I was convulsing again. Stubborn as hell, I decided "FINE! I'll take the meds but I'll be damned if I sit back and let this illness take over my life!" I took the bus. I walked in the heat. I went to coffee. I made dinner. Next day, my legs didn't want to work, but I forced it and went to farmers market, then to coffee with a friend. I pushed and pushed and pushed because I was NOT going to sit back and accept my limitations! A few minutes ago, I had several major convulsions, like the ones I had before I ended up in the hospital. The kids had to call Jason home from work and I am pissed as hell!
I missed my daughter's field trip last week, the first of my kids’ field trip I'd ever missed. James has had an incredibly poor school year because I've been so messed up with one thing or another that I haven't taken the time to figure out what's going on in his classroom and now I look back over the year and CRAP! What a mess! These stupid convulsions have taken away my ability to drive and therefore to shop by myself, or even drive around to blow off steam. I've lost friendships because the only thing that was keeping them alive was my ability to drive and now that I can't, they have fizzled into a shell of nothingness. Because I physically can't handle the demands of clothing at citp, I have left that role and the hours of social contact it was giving me, not to mention the self-esteem boost of being in a position of leadership. Yes, I do see how God is using all of these things to refine me, to point out my flaws and make me a better person, but it definitely isn't pleasant! I feel so out of control and mad, mad, mad!!! The crazy part is, what difference does all this anger make? None whatsoever. Absolutely none at all. And I despise anger with a passion! I hate the feel of it. I hate the sound of it. I hate the existence of it. I wish there were some miraculous pill they could give to take all that anger away. I can understand the appeal of drinking and drugs now, the ability to forget, to deaden the pain just for a little while. However, one of the things I also learned in college, along with the DABDA acronym, is that if a person does not work through the stages, they will get stuck somewhere in them. Sometimes people get stuck at that anger stage their entire lives, but I'm determined that I will not fit into that statistic and instead will look forward to the day when I reach the final A of acceptance.

Medical update

I have so many blog posts floating around in my head, but I'm either too busy or too exhausted to post them most days. Today, I thought I'd update what we know medically, since that's what I seem to get the most questions about. Some of this may be duplicate posting because I can't remember what I have posted already and what I have only thought about posting and I don't feel like reading back over my older posts to find out :-).
Currently, I am taking medication that keeps my convulsions under control, so I am no longer struggling with that aspect of the illness. I do have tremors at times, and get easily exhausted, but seem to be doing physically better and better. Emotionally, I'm struggling. Some days are better than others. I'm not sure how much of that has to do with my illness and how much of it has to do with the myriad of other things that have seemed to all hit at the same time, but I try to remember that this too will get better. One way or another, it will get better. As I peel each piece of the emotional onion away, eventually the pain will be gone and there will be victory and confidence in its place. Baby steps.
Back to the physical part of my life. One of the possible culprits we are looking at for my symptoms is MS. There are 3 tests that typically determine whether a person has MS or not. I've had all three, but am waiting for some of the results back. The MRI says I might have MS. So far, the results that have come back from the spinal tap (they come trickling in, every couple of days) are all negative for MS indicators, meaning my levels are normal in all areas tested so far. The third test is the Visual Evoked Potential. I had that done in Sacramento on Monday and do not have the results back yet.
I have an appointment with my neurologist on Wednesday the 16th to discuss whatever the results may be. If the VEP is negative for MS, I have no idea what our next step is. She wouldn't say last time I was in the office. She just said "Let's wait and see what the tests show." So we are waiting and looking forward to seeing :-).

At the cross

Today, I'm going to set the stage for a future post, because I know that for me, if blog posts are longer than a page or two, I say "forget it" and never read them, so I'm cutting this one up so you'll actually read it :-).
Four weeks ago, I went to Church in the Park in a wheelchair. My convulsions had gotten pretty bad by that point and I was regularly losing the use of my legs, hence the need for the wheelchair. During that time, if a convulsion was about to come on, I would get an "aura" of sorts, warning me of what was to come, and I could lay down and get into a safe position before my body decided to take on a mind of its own. That Sunday, I had sat through the service and someone brought me lunch so I didn't have to go through the line. I was sitting in the back, near the sound table. People were lined up within a few feet of us, waiting to get their food when I felt the "aura". I told Jason and Sonja who were standing next to me to get me out of there because with 200 people standing around, I knew someone was bound to call the medics whether we asked them to or not and the last thing Church in the Park needed was an ambulance trying to squeeze its way into the parking lot at lunch time. The problem was, I knew I only had about a minute before I couldn't control my body anymore and when Sonja turned the chair to get me out of there, she headed TOWARD the line of people. I knew there was no way we would make it past everyone before our time ran out, so I yelled at her "No! The Cross! Take me to the Cross!" She whipped the wheelchair around and headed down the hill, away from the crowd. We made it to the foot of CITP's portable cross right as my convulsion hit and I lay in the mud (it had been raining all week) until my convulsions stopped long enough to get me into the car and on my way home.
I didn't think much of the significance of what had happened until days later, when life got even more difficult and the reality of my illness hit home. I now had a vivid image in my brain of Sonja dumping me at the foot of the cross, and when the fear and the anger and the pain of my situation all rained down on me at once, I was reminded that I had been dumped at the foot of His cross and that the blood that He shed while upon that cross covered me utterly and completely. Even though that particular cross meant nothing in and of itself, the symbolism of it helped remind me of where I lay, each and every day, at the foot of the cross of the One Who gave His life for me.

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.