Saturday, March 31, 2012

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, March 29, 2012

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.

Tuesday, March 27, 2012

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.

Tuesday, March 13, 2012

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!

Sunday, March 11, 2012

Spasms

Today is the very first baptism at Church in the Park and I am determined not to miss it. My tremors have been getting more and more severe the last few days. I woke up today with tingling in my lips, a symptom I've had before, but then I started having tingling in my tongue and in my feet, which I have not had before. My head started to jerk and then my whole body started to act like a puppet on strings. Interesting walking experience, that's for sure!
So it is now 8:45 and I have already taken a xanax. I hope it calms the spasms enough that I can enjoy the service. We had to cancel clothing today because I just wouldn't be able to do it.
It's weird to continue putting into my body the drugs that I know are doing this to me. Pristiq is making me spasm and to continue to take it for two more days because I can't go off it cold turkey and I don't have my doctor's appointment until Monday at 11:40 is very frustrating. I feel like I'm intentionally ingesting poison for two more days. Well, I guess I am, but I don't see any other option right now.
On a lighter note, Gabby does a hilarious impression of the "Mama Shake"! I will try to video tape it and post it here in the next couple days.
Gotta run! Church in an hour!

Tuesday, March 6, 2012

Medical mystery

My tremors and spasms have returned. Had a short episode Sunday during Church and a really bad one yesterday. I'm very frustrated. I spoke to my sister Katie, who has MS (Multiple Sclerosis) and she said my symptoms match what was happening to her when MS first started to flare up in her body. I am not scared of the disease per se. Not exactly what I would order for myself if I was the one doing the choosing, but I know God is in control. Where my frustration lies is with the medical aspect of things. I have no idea if I have MS. It's possible. It's also possible I have something completely different. Maybe I'm just having an adverse reaction to the medications I'm on. I'm not usually one to dream of being independently wealthy, but today I do. If I were, I would undergo a whole gamut of tests, MRIs, blood tests, whatever was needed and find out what the heck is going on in this body of mine. But I don't have an unlimited supply of money and I don't want to waste the resources God has given us on pointless tests that will reveal nothing. We've already spent thousands on medical bills over the last couple years and it's getting really annoying.
How do I explain my symptoms to a doctor? Um, yes, doctor, I'm really, really tired. Exhausted as a matter of fact. I will lay in bed super thirsty for half an hour before I will force myself to get out of bed to get a drink. My legs ache. My back hurts. My muscles spasm, sometimes, but not always. My brain...well, it's not really foggy, but it just draws a blank sometimes. I go to get something but then can't remember why in the world I'm in the room I'm in. I'm moody. I'm always an emotional person, but sometimes, like the last couple days, my emotions go nuts and I get frustrated because I can't take myself seriously and neither can anyone else.
I'm scared. I don't know what lies ahead. I do know that God is in control and sometimes my faith is strong, but sometimes I'm tired. And I'm weak, and I feel very, very alone.

Thursday, March 1, 2012

Walking with me all this time

I was reminded of something I had forgotten today. I had an appointment with my psychiatrist this morning and I was incredibly frustrated. My anxiety has been really high this month, not really the result I was hoping from the new med I switched at the beginning of the month. I was dreading yet another doctor's appointment with no change, no results, stuck in the quagmire of a mind that won't stop, stress that won't diminish, anxiety that won't leave. I was mentally banging my head against a wall as I was driving, frustrated beyond belief, wondering what in the world it would take to FIX me! Where was that magic pill that would make it all better?! Then a song came on the radio. It's a new one "All This Time" by Britt Nicole. I'd never heard before. It's not particularly well-written or catchy, but today, it was EXACTLY what I needed. As the words flowed from the speakers, they went straight to my heart. I posted them below so you can read them. "You've been walking with me all this time." See, in my frustration, I forgot that life with God isn't about being perfect. It isn't about never getting sick, never hurting, never falling. It's about the journey, the relationship we have with our Creator. Today, I am medically no closer to freedom from the anxiety that I feel robs so much of my life. But I am reminded that as I walk through this, good days, bad days and all the days in between, He's right there with me and that makes it all okay. Not easy, but okay.



Thank You, Lord, for the blessing of Your presence in my life. Thank You for the days like today when I can just climb up on Your lap and just be. I can't give You anything today. I don't have it. I'm tired, I'm sick and I'm fresh out of "oomph". But I thank You because You love me just the same. Thank You for not being a fair-weather God. I am blown away today by the extent of Your love, Your acceptance, Your grace. Thank You for being my Daddy.
 


ALL THIS TIME
By Britt Nicole

I remember the moment
I remember the pain
I was only a girl
But I grew up that day
Tears were falling
I know You saw me

Hiding there in my bedroom
So alone
I was doing my best
Trying to be strong
No one to turn to
That's when I met You

All this time
From the first tear cry
To today's sunrise
And every single moment between
You were there
You were always there
It was You and I
You've been walking with me all this time

Ever since that day
it's been clear to me
That no matter what comes
You will never leave
I know You're for me
And You're restoring

Every heartache and failure
Every broken dream
You're the God who sees
The God who rescued me
This is my story
This is my story

I hear these people asking me
How do I know what I believe?
Well I'm not the same me
And I saw the proof I need
I felt Love I felt Your grace
You stole my heart that day