New beginnings

I will no longer be posting on this blog. I have started a new one at http://thistreasureinjarofclay.blogspot.com/ . Hope to see you over there! :-)
-Becca

Sit down!

I find it ironic that every time I refuse to stop, God has a way of putting me on my butt. Last August, when I was put on a 5150, the intake social worker fudged the paperwork to get me in. I didn't know this until afterwards, when I saw the papers that said I had a plan to hang myself. What?! I had no plan and if I did, that is DEFINITELY not the way I'd go! But apparently, to "qualify", I needed a plan, so she made one for me. I remember laying my head on the bench in the intake room of the mental hospital, with the sunlight streaming in that window and feeling so very, very tired. And as I laid there, I was so incredibly relieved that everything had stopped. I wasn't allowed to have my phone, so there was no texting, no facebook, no emails, no phone calls. There were no children clamoring for my attention, no people in need to be helped, no husband to be taken care of. I didn't have to worry about what we were going to have for dinner, or whether the house was clean enough, or whether the kids had done their homework. It was quiet. For three days, life stopped. I slept. I journalled and I played lots and lots of Rummy. Looking back at it now, I wonder, if I had stopped myself, if I had taken the time to relax, if I had shut off my phone, got a sitter for the kids and ordered take out, would I have ended up where I was? I don't know. There were many other things going on at the time that contributed to my mental illness, but I do wonder.
A few months later, I started developing tremors that turned into spasms that turned into convulsions that landed me in the hospital for a week. Again, life stopped. I was parked in a bed for a week! My meals were brought to me and I had no responsibilities other than getting well. Stress seizures, they told me. Stress seizures?! Stress parked me on my butt in the hospital for a week?! Again, had I stopped, had I turned off my phone, hired a sitter and ordered take out, would I have ended up in the hospital? In this case, I think yes, because my stress was of a nature other than just being busy. I had some personal issues I needed to take care of, but had I taken the time to slow down and deal with them, perhaps God wouldn't have needed to plop me on my butt in a hospital room. Perhaps, but who really knows?
Now I'm facing a suspended license. I pushed and pushed and pushed myself over the last month, to the point that I couldn't stop. I kept saying I would, but every time I tried, something would come up and I wouldn't say no. Then, out of the blue, I found out that I am not legal to drive for another MONTH!! What?! Suddenly, my calendar is wiped nearly clean because I have no way to fulfill the commitments I made without a car and I am, once again, parked on my butt.
As frustrating as it is, I see God's love in this. I don't know why I'm so stubborn and didn't learn my lesson the first or second time. Perhaps this third time, it will take. After all, this time, I'll have a whole MONTH to think about it, lol! There is something heartwarming for me, in looking back over my life, not just this last year, but over my life as a whole, and seeing how time and time and time again, God stepped in to protect me from myself. I am incredibly grateful to Him for that, thankful for His watchful eyes over me.
And now, off to pump up my bike tires :-).

Rest

I'm standing all alone in the middle of nowhere. The sun is beating down on me and the ground underneath me is parched, with deep cracks in it. I'm standing strong as the heat and the wind beat about me, but I'm tired. So very, very tired. I'm standing tall, but I feel as if at any moment I am going to fall. My legs are shaking and I'm exhausted. Then all of a sudden, out of nowhere, He comes. I can't see His face, but I know it's Him. He's big and soft and oozes warmth and peace and kindness. I fall into His arms, bury my face in His chest and cry. We share no words. I just stand there, supported by His love and I feel His strength pouring back into my veins. I know it's still hot and parched all around me, and I know there will come a time again soon when I will have to stand strong, but right now I am a pile of mush in my Daddy's arms and I savor it. I breathe in deeply, thankful that right now, He's carrying it all and I rest.

WOW! I don't even know where to start, or how to word what it is that is going through my head right now. I'm sitting here, staring at the computer not knowing what to say because tonight, I made a life-changing realization. It's funny because it's one of those things that I probably would have told you I knew before tonight, but tonight the reality of it hit me and I'm sitting here feeling light, and free, and, well, sort of unsure of what to do with myself without the heaviness of the burden that has been weighing me down for the last two years. Let me see if I can explain.
I am naturally co-dependent. It requires effort on my part to not feel responsible for other people's feelings and for the circumstances of their lives. However, I usually make a conscious effort to remind myself that I am not responsible for other people's happiness and do not allow their unhappiness to ruin my life. For some reason, however, I missed it in one of my friendships. I just didn't see it! I took upon myself my friend's happiness and set out on the roller coaster ride of my life! We'll call this friend Hank for the purposes of this blog because I don't actually know any Hanks in real life. Oh, wait, yes I do, but he's just an acquaintance that I see only every few months, so you can rest assured that I'm not actually talking about Hank. Or maybe I should call her Sophie. Why Sophie? Well, I don't know. Why not?
For two years, when Sophie (aka Hank) was happy, I felt content and happy and satisfied. When she was upset, angry, lonely or sad, I felt responsible, down in the dumps, inferior and a failure. I cannot tell you what it was about tonight that made me finally see that her loneliness/unhappiness is not my burden to bear, but for some reason, the blinders just fell off my eyes and I became aware of the fact that HER choices that have led her to where she is now and I cannot change those, nor can I live her life for her. She decides if she wants to get close to other people or would rather isolate herself in her work and ministry. She decides if she wants to spend her evenings alone or with friends. She decides if she wants to trust others and open up or guard everything she has close to her chest. I cannot change her, and I cannot cure her loneliness no matter how hard I try because her loneliness is of her own making. I will always be her friend, but I've finally realized that I CANNOT be her savior and what a freeing realization that is!

New Beginnings

An unexpected result of recovery has taken place in me. It has created a certain restlessness, a searching for something, anything to occupy my mind and my time. For the last year, I have been attempting to survive, to make it through the day, to talk myself into living. I had no healthy dreams and no goals. My mind was so trapped in unhealthy thought patterns.

Now, as I heal, I find the obsessive thoughts calming down, and the desire to really LIVE again rising to the surface. With this comes a sense of bewilderment, of loss, because I don't really know what to do with myself. I have energy. I have time. I have dreams. I have interests, but all of these seem foreign to me and I'm not sure what to do with them right now. I want to go somewhere, to do something, but I don't know which direction I'm heading!
So for now, I'm pursuing the interests I know are real and genuine, like my desire to learn sign language. I'm diving into that, signing every chance I get, carrying my flash cards in my purse and signing to the kids when I know the signs of the words I'm speaking. I have no idea why God has placed this desire to learn in my heart, but it's strong and has been building over time, so I'm going with it :-). We shall see how He chooses to use it.
I'm also looking for social outlets. Church in the Park was my life for the last two years and while I still am incredibly passionate about CITP, and throw myself into it every chance I get, I am no longer in leadership there. I stepped down from clothing when I got sick and have opted not to take back my position in clothing because I feel God leading me to serve in other areas of Church in the Park. The fall back of that decision, however, is that my work in clothing provided me with my mid-week social contacts, when we sorted clothes, and when I did clothing pickups. Now I need to find another way to fill my need for social contact. I'm hoping to join a mid-week Bible study at either Big Valley Grace or Shelter Cove, but I'm not sure yet.
Right now, the world is my oyster, so many opportunities to choose from. Life is exciting and inviting and full of joy and beauty. Praise the Lord for second chances!

WOW! I came on here today because I wanted to type a new blog post, and instead ended up reading my last two posts. I sit here in awe because I was feeling really frustrated that I had slid back some, back into my anxiety over the last week, but then I read those posts and realized how far I have come in the last month and I can't help praising God for His goodness and faithfulness! I can't believe that only a month ago, my body was still giving me fits and I was unable to drive. Today, I don't give a second thought to whether or not I'll be able to walk, or whether I will go into a seizure. I am completely med free (except for a sleeping pill I took last night and the night before), and even though my depression and anxiety are still a huge part of my life, I am functional and can shove them aside for awhile when life demands it. Yesterday, I realized that a feeling I used to have regularly had returned. I don't know if I can describe it well enough for all of you to understand, but it's a feeling of restrained laughter, that at any moment, the laughter that is welling up inside my chest will come out in a full on burst of giggles :-).
It's funny, really, to look back over the last year and a half. If I had met me a year ago, I would think of myself as a very sad and depressed person, but truly, at my core, I am not. I love life with everything in me. But this year, the pain, guilt, shame and stress of life piled up on me so heavily that the laughter that lives inside of me got smothered. It is so nice to throw off the bricks of depression one or two at a time and give that joy some air again!

The flip side

I'd like to sit in my quagmire of anger and depression. Not sure why exactly. What the appeal of that is. Perhaps I feel entitled to a pity party for myself. Perhaps I just don't want to muster the strength it takes to reshape my thoughts. But whatever the case may be, there comes a moment when it is time for me to put on my big girl panties and get moving again.
Today, I physically can't. My body is reeking havoc on me, and mentally, it was a doozy of a day too. I just didn't want to go on. What was the point? But I have decided to look at the good that this illness has brought, because as much as I don't want to admit it, it has come with some decidedly good things.
First, it has brought our family together. Because I can't go anywhere without someone taking me, we have had to do a lot more as a family than we used to and this has already allowed for a couple of really good memories already. Because I can't drive, we have to go everywhere in one car, creating more family time with all four of us.
Secondly, in our marriage, it has reinforced the knowledge I had that Jason will stick by me through thick and thin. The man has been tender and loving and incredibly supportive and I know he loves me unconditionally.

Thirdly, we have reached our family medical deductible so all medical expenses from here on out are fully covered, LOL!! No more stress in that regard :-).
Fourthly, I have learned to cherish the little moments I get with the kids. Instead of stressing about getting them to bed, getting the dishes done, etc, Jason gets to stress about that (just kidding), and I get to value the few minutes I get to snuggle with them in bed, to stroke their faces and let them know how much they mean to me.
Fifthly, (and I struggle with this blessing still), this illness is teaching me to look at my life, keep what is important, uplifting and wholesome and get rid of the activities and relationships that didn't need to be there. I struggle with this one daily because I like things to be "normal" and when the apple cart gets upset, it is challenging for me put back the pieces, but good definitely does not mean painless, so this one goes on my "good" list.
Sixthly, past friends have come out of the woodwork and old friendships have been renewed. Blessings that were there all along, but just hiding around the corner.
Seventhly, my larger family, as in my sisters, brothers and parents, has show way more support than I would have ever deemed possible! I have been very loved and supported.
I could go on, but my body's getting mad at me for sitting up for so long so I must go lay down. Until next time :-).

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.

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.

What do we live for? Do we live for eight decades of laughter, of peace, of love and of happiness? And when those things don't happen, when life intervenes, do we cry out in anger, indignant that life isn't fair? What did I do to deserve this pain? What did I do to deserve this heartache? Well, let me ask you something. What did I do to deserve the first breathe I took? What did I do to deserve the years I have already received? Nothing. I did nothing. I just existed. Those breaths, those years, were a gift to me. I am entitled to nothing but I am gifted with much. Everything I have, everything I will ever receive from this point on is a gift, so when things don't go my way, I cannot be angry because I still have way more than I could ever deserve. May my lips never curse the One Who has blessed me beyond measure!

"The Lord giveth and the Lord taketh away. Blessed be the name of the Lord." Job 1:21

Thursday update

Today was an interesting day. I didn't sleep well last night. No particular reason that I could pinpoint. Just restless. Woke up at 4:40 to use the restroom and got something to eat then went back to sleep. When my alarm went off at 6:45, I still felt exhausted. I noticed my face felt more numb than usual and my lips were tingling. Jason said something to me and I suddenly noticed that I couldn't speak. I was completely lucid. I understood everything he was saying and my mind could formulate a clear response, but I could not get my mouth to speak the words. After a few minutes, my words kicked back in, and then a few minutes later, I once again couldn't speak. The next time my speech came back, I quickly told Jason what sign I was using for yes and no, and explained to him that I was completely lucid, just couldn't get my mouth to move. Then my body went into convulsions. Again, I was fully lucid, and it didn't scare me as much as it had in the past because I had experienced these types of convulsions before, but I did decide to take a xanax. Starting the day off with a xanax before I'd even left my bed wasn't exactly how I had hoped to start the day and at first, it didn't pay off immediately. Because not only did I continue to have spasms, but my clear brain went foggy because of the xanax. Within a half hour or so, though, it did kick in fully, my speech returned and I was able to get up and take a shower and get ready for the day.
The kids ended up being over an hour late for school because Jason didn't feel comfortable leaving me until Sonja got to our house at nine. After Sonja got to the house and Jason left for work, Sonja and I went to the storage to sort clothes. I was hoping I would be able to help, but my legs weren't working well and my balance was off, so I stayed in the back of the car while Sonja, Gary, Audry and Ronnie sorted. I had three full body convulsions during those two hours, but one of the nice things about whatever this affliction is is that I get an "aura" before most of the convulsions, so I was able to set my coffee, phone and glasses to the side when I felt it coming on and curl up into a safe position so I wouldn't get hurt.
After storage, we grabbed some Taco Bell for lunch, then headed to my psychiatrist's office to sign a release form so they could fax my records to the neurologist. While there, I discovered that I am not authorized to have a copy of my own records. They can only fax them directly to the doctor. When I asked her why, she said "because it's our policy". Alrighty, then. We then went to get a copy of our house key made so that Sonja now has one in case she needs to get into our house for any reason. Then we went by the school office and I added Sonja as an emergency contact so that she can pick up the kids without us having to authorize it every time. By the time we picked up the kids, both Sonja and I were exhausted, and I wanted nothing more than to lay down and sleep, but I needed to help the kids with their homework, so after resting for about half an hour, I got up, helped the kids with their homework and made dinner. I have been spasm free since about 1:30 today. Woohoo!! While I definitely don't feel "normal", it feels really good to have the use of my arms and legs for several hours straight without interruption.
The kids seem to be doing ok. Gabby was disappointed that I couldn't go to the talent show at the school today. She said it was going to be really hard for her to watch since she really wanted to be in it, but didn't make the cut, and I told her I was really sorry, but then told her I didn't think people would appreciate it if I started convulsing in the middle of the show. I did a little demonstration for her. She thought it was funny and that was the end of that. James, on the other hand, seems a bit more concerned. This morning, he said he didn't want to go to school because he wanted to be right next to me to make sure nothing happened to me. After school, I was relaxing on the floor and he started rubbing my feet and asking me if that made me feel better. Then he got onto the computer and tried to find information on tremors and massage to see if he could find out what pressure points in my feet would make my tremors stop. And he's been asking questions. Tonight he asked what would happen if they couldn't fix my spasms. We've been trying to answer his questions as simply and as honestly as possible, although we don't really have many answers to our own questions at this point.
Jason called the neurologist this morning and explained to them what was going on to see if I could be seen earlier than next Friday. They said they would try to squeeze me in tomorrow and that they would call back to confirm. They never called back and when Jason tried calling them repeatedly toward the end of the day, it rang busy. We will try calling them again first thing in the morning, but I'm not holding my breath. If things continue to deteriorate as quickly as they have this week, however, I plan to head to the ER if the neurologist won't see me. Right now I feel good though (other than some numbness in my face and tingling in my lips) so I'm hoping that perhaps whatever this is will leave me alone for a few days until the doc can see me and I can hopefully get some answers and some relief.

The beauty of today

I typed out an entire post, but then my computer ate it, so I've decided to go a completely different route with my post tonight. My medical symptoms have worsened, and with the increasing severity of my symptoms has come a new-found awareness of my vulnerability, of the fact that there is no guarantee of tomorrow. And along with that has come an appreciation of the things that I oftentimes take for granted, because when you don't know if there will be a tomorrow, you realize all that today holds. (*disclaimer: As far as I know, I am not terminally ill and do not expect to die in the near future. It's just that my body is doing some pretty scary things, which make me realize that health and a long life are no guarantee.)

 So right now, I am thankful for all of the things that today holds. I am thankful for the smell of roses on a warm spring day, and for the sound of that perfect song at just the right time. I love the feel of a friend's arms holding me in a hug that tells me just how special I am to them. I cherish the smell of the rain on dirt after a long dry spell, and the sound of the birds chirping in the trees. And that feeling you get when you take a bite of a perfect piece of cake and you savor every millisecond of it because it was just that good. I love that too :-). And I love the sound of my daughter giggling while she plays with her daddy and my son's non-stop discourse when he describes his latest idea for a new invention. I love the smell of coffee after a long, hard day and the feeling of sinking into a freshly made bed and smelling the clean sheets. I love that feeling when you've laughed so hard that tears are streaming down your face and your sides hurt so bad, but you just can't stop because the joy just has to come out. Oh, and I love meeting someone my soul connects with. You know, someone you talk to for hours and then realize that you have to leave, but you really don't want to because there is still so much you want to know.

So tonight I share with you just a few of these things that I love in today because tomorrow is no guarantee. And when that day comes when there are no more todays, I will cherish the presence of my Lord, which will beat all of the beauty of all of my todays by a mile. But for now, the beauty of today is all I know, and I cherish it.

Transition

Well, here we go! Went to the psychiatrist yesterday and am now weaning off Pristiq and onto Lexapro. Pristiq and my body were definitely NOT a good combo and I am very relieved to be getting off of it. The doc said it will take about a month to get it out of my system, so my mom is coming down from Oregon to help us while I transition. Because my spasms have gotten so bad, I am not safe to drive or ride the bus, which severely limits my ability to do daily tasks like pick up the kids from school, grocery shop, etc.
And I miss my brain. How I miss my brain!! I live in a near constant brain fog right now. Very frustrating. I can't wait for that to lift. Speaking of brain fog, typing blog entries can be challenging in a fog, so this one will be short and sweet :-). Thanks for reading!