Maybe it's all about the onion?

Had a few bad days. Honestly, I am tired of the pain. I am tired of the emotions. I thought I was superwoman and would bounce back like nothing. Reality is quite different however. I woke up this morning to an empty house. Not abnormal on a weekday but it's Saturday so it just feels odd. Dave is out running errands I would normally do but am unable and I feel bad for him. I feel like I suck as a wife and Mom lately. I know, I know - I just had major surgery and all but I just wasn't prepared for this. When I read all the horror stories of the recovery from this surgery and then saw how I was home the next day and feeling pretty good, I got cocky and thought I would be different but I must admit, I am not. This sucks. This hurts. This is part of the process.

That may be the key right there for me. All along I have know God had plans for me during this process and it wasn't just to make my spinal fluid flow like He originally planned, it was to deal with what really matters - my heart. So, now I ponder the point in the pain.

I am beginning to think this is layers being peeled away. My defenses are down, I am not so busy I can distract myself from feeling anymore. All I do is cry. OK - maybe a slight exaggeration but I cry a LOT lately and don't know why. Maybe a hardened shell isn't productive in the Kingdom. I know it isn't. It is something God has been working on since I finally gave up running from Him a few years ago.

Over the years, I learned to add layers. Life sucks, people hurt you and you either deal or you add protective layers. Layers that don't let people in, if they can't get in, they can't hurt you. These layers are leaving me, in the form of tears. I am guessing I had more layers than I admitted given the amount of tears coming out of me lately.

Reminds me of a song -Healing Rain. We used to sing this song at my old church. It made me cry and I never knew why really. It hits me hard now. I wish I had a video to share of the guy who sang it at our church, his voice is unmatched, even by the original artists on most songs. It speaks of healing rain coming with fire and not being afraid. I sang it, arms held high, wanting to be healed but I am not sure I really GOT it until this morning.

So now the task is to see the tears as healing rain, a gift from God. Healing my broken heart, preparing it for for His plans.

Wish I could post a video of the song but I am not that geeky :-(

Healing Rain by Michael W Smith

Healing rain is coming down
It's coming nearer to this old town
Rich and poor, weak and strong
It's bringing mercy, it won't be long

Healing rain is coming down
It's coming closer to the lost and found
Tears of joy, and tears of shame
Are washed forever in Jesus' name

Healing rain, it comes with fire
So let it fall and take us higher
Healing rain, I'm not afraid
To be washed in Heaven's rain

Lift your heads, let us return
To the mercy seat where time began
And in your eyes, I see the pain
Come soak this dry heart with healing rain

And only You, the Son of man
Can take a leper and let him stand
So lift your hands, they can be held
By someone greater, the great I Am

Healing rain, it comes with fire
So let it fall and take us higher
Healing rain, I'm not afraid
To be washed in Heaven's rain

To be washed in Heaven's rain...

Healing rain is falling down
Healing rain is falling down
I'm not afraid
I'm not afraid...

Staples are out!

The long awaited staple removal day has come and gone. Tuesday was an eventful morning to say the least as we headed out the door. Dave has a bad knee, an old injury he has yet to deal with and he slipped and fell in the shower. Full blown crashing down in the tub fell as we were trying to leave to head to U of M. Got that crisis solved only to head out the door and me getting sick. I was having hot and cold flashes and we stopped for lunch. I have this bad habit of not eating enough and not even knowing it. Dave is a smart guy and assumed eating would help. It did, I felt better and we had an enjoyable ride to the Docs.

Staples came out easily. MUCH easier than I remember the staples from my last C-Section. Only three hurt when the PA took them out, not bad at all. I was excited to see what my head looked like minus the metal so I had Dave take a pic with his phone - BAD idea! YUCK!!! But - at least they are out!

Yesterday and the day before were rough days. Sore and stiff all day. I assumed I had just done too much on Tuesday, being up ALL day without resting my poor neck. By last night I was frustrated and needing relief and hoping today would be different. Haven't been up long but it's not looking good so far.

I am complaining and I know I have no right. My recovery has been so smooth but I am TIRED OF THIS ALREADY! I wanted to have one thing on my to-do list daily, that's it, so I have some sense of accomplishment. Yesterday was ,making dinner. The real kind, not frozen stuff you pop in the oven and call it good. So I made beef soup. Who knew how many muscles in your neck it took to cut up meat? I do now :-( Dinner was good, everyone was happy but it bothers me that such a simple task was so hard for me.

Maybe I ave a superwman complex I need to let go? I assumed that since I was home the next day and am doing so much better than expected, I would be actually doing more than expected. Maybe this isn't the case. I thought resting would make it better, it gave me hope for today and yet I woke up worse than yesterday.

I hate to complain to Dave. He worries, it's his job he says. Knowing I have to go through another major surgery in just months, how do I tell him how bad I really feel and expect him to be OK with me doing this again? What good is two depressed people? One of us needs to have hope that there is a light at the end of the tunnel and I guess I feel like it's my job to provide that light.

I know God has a plan in this. I really do. Some days, it is just harder to trust that plan. Today is one of those days I guess....

My life in pain - a poem

Found this poem that made me cry. This woman has a gift, a gift to put into words my life.

M Renee Gallop
My Life in Pain

Pink flawless skin, so soft and tender,
Sweet baby girl, full of hope and wonder....
Tiny little cries with new breath of life,...
No one foretold future years of such strife.

Very stubborn, strong-willed, and always full sail.
Living life to its fullest, blazing her own trail.
Educated by experience, a stranger to fear;
Walking on faith blind to demons near.

Savor the highs, she's always vowed;
Enjoying the journey of living out loud.
Sampling the world, an adventure to roam;
With God's gift of grace, her heart found a home.

Blessed in love, her best self she'd found;
Charming those near, laughter her favorite sound.
With drive, dreams, and wit, seeming to have it all.
Now hearing the whispers, her health soon will fall.

Her brain slipping downward, her MRI notes;
She's buried in pain and a sea of white coats.
Giving up her goals, her body now weak;
Rare condition they say, new specialists she'll seek.

More scans and tests, questions abound.
Surgery the only hope, no cure to be found.
Her balance so unsteady, her head in a spin;
Aches and pains all over, her energy now thin.

Her health is unfaithful, her body betrays;
A beauty now broken in so many ways.
Grand dreams now futile, her efforts in vain;
A new evil now lingers bringing more pain.

Unable to think clearly, illness her new friend;
Her body the new battlefield, the medications defend.
Time is her warden in this prison full of ache;
She'll live long in her torture, her life it will not take.

Once her drive was so strong, but now it's dwindled low;
Her star then blazing brightly, is now a dimming glow.
A life so full of joy, and with passion for the quest;
She's unable to move forward, for now it's time to rest.

The playground of her world, once welcoming and warm;
Now stealing with shadows, thriving in her harm.
The warriors of disease will battle all life long;
Breaking her defenses, the beasts seem so strong.

"I will add to this the beast that is Chiari is strong but my God is stronger... - Amy"

I thought I was ready, I thought I was tough

That's what I get for thinking huh? I am a planner by nature. I plan everything, to the point of driving my loved ones crazy, it's just how I roll. I planned out who would handle what, how I would handle the different hurdles and thought I had it all figured out. What I didn't plan for was the emotions.

This is like the worst case of PMS ever combined with the insanity of a ready to-pop Mama to be and a new-Mama combined. I cannot seem to control my emotions. Not even sure what my problem is really, maybe THAT is the problem. As far as healing goes, it doesn't get much better than my case. Sitting up without assistance the same day, discharged the day after brain surgery, doing laundry and simple household tasks within days, cruising walmart in an amigo within a week and over an hour slow trail walk in less than 2 weeks. Many of my symptoms disappeared when I woke up from the anesthesia. Sounds wonderful right? I guess it is compared to most stories I have heard. Yet, the wind blows and I am this big pile of mush, crying or angry or both and I have no idea why. I blow up for no reason, I cry for no reason.

I was not prepared for this. Physical pain is a funny thing - when you live in constant pain, adding new pain isn't that big of a deal so the added pain of 19 staples in the back of the head, pieces of my skull and one of my vertebrae missing are really not that bad. Does that make me lucky? I guess so yet I don't feel like it.

Maybe I did so much planning I didn't stop to think that this isn't even a cure. I know there are no guarantees in life but it appears I will be facing even more major surgery in a few months, my lower back needs to be fixed. Can my marriage handle it? Can I do that to my kids again? Can I loose more pieces of me? Am I just feeling sorry for myself?

All the amount of physical ailments in the world does not give me the right to act this this way. I have been saved, I have the promise of a perfect body, the promise of a forever life with my Savior. THAT is all that matters and somedays - that reality is just hard to find.

Wow - a week already!

Took a picture of the incision, Dave says it looks good - I personally cannot wait until Tuesday when the staples come out. It itches, feels swollen and is hard to brush my hair, I am afraid of brushing a staple!

Yesterday was a week since my surgery. I had a very good afternoon. I was vertical for 5 hours, wow that felt good!! Went to Walmart, got to ride the amigo and pick out foods for me. I have no appetite which isn't good. Was hoping if I picked out food I like, I'd eat.

Sad part is I paid for that today. This morning and early afternoon were one of my worst days. I slept, I whined, I took meds and it finally let up this afternoon Thank GOD!!!

So - symptoms gone so far - my hands and feet are now a normal temperature, insomnia seems to be gone, my fingers are no longer numb and my limbs no longer have that horrible pins and needles feeling. One of the oddest symptoms is that I am not thirsty as much. It used to be bad, I had to have a drink with me everywhere! Diet Coke was my choice and now - well, it doesn't taste the same. Odd.

Now where were we?

Sounds silly but one of my biggest fears was what I would look like with the shaved head. Yeah I knew it was only a part but it still bugged me. I have hair with a mind of it's own anyways, curly, frizzy and disobedient. I was so shocked when my hair covered most of the incision :-) You can see some of the staples at the bottom but not many! YAY!! I didn't even have to work for this :-



I think it is Wednesday now, not super sure, the days all kind of blend honestly. The last few days have been the same. Each day a tad better than the last, with the exception of morning and evening. I am on this plan to hopefully wean off the narcs and stick with just the muscle relaxers as that is most of my pain, from my poor neck muscles.

I sleep a lot. I sleep hard and long and night and usually take one good nap during the day. My day consists of bugging people on facebook and playing farmville. I also spend my day fighting with my dogs and cats. They love the concept of the big bed which has Mama in it in the living room except that Great Danes take up the entire bed so I am forever asking one to leave. Like their Mom, they sleep hard so it is no easy feat to move them :-) The cats seem to adore my pillows and no matter how fast I go from moving them to getting my head back down on my pillow, they are faster and we repeat the process. lol

Eric is still taking care of me. He feeds me, finds my lost slippers, phones or whatever else I loose and takes care of the doggies for me. He is such a good kid.

Need some cheese for this WHINE!!!!

We will take a break from the regularly scheduled blog post just in time for this breaking news - I SUCK AS A PATIENT!!!

Recovery SUCKS! Maybe I am just venting, spoiled brat that I am, I feel like I can I guess. I have had a super recovery and yet - I am disgusted already :-( Tomorrow is a week since my surgery (I think - what day is it anyways?) and I feel a million times better than the stories I have read. So why am I complaining? I guess I assumed I would be rather knocked out from pain meds and would sleep this part away, but no such luck. Thank God really, I am mostly down to just muscles relaxers for pain. I don't need the major narcs. I just hate the useless feeling. Yeah I know - recovery is hard work but still!

I hate the fear. I wake up with an odd pain and I freak my CSF is leaking or I popped a Dura stitch. I can't process complex writings yet or I would be studying something, I can't be vertical more than 30 minutes without needing narcs and I am trying to wean off them. Sorry, just venting and hoping some will understand. Hubby keeps trying to fix me. Bless his amazing large heart but I am not a computer gone haywire he can tweak or a loose board he can nail down. I just want to cry and eat chocolate - lots of it!! if you made it this far, bless you and thank you for just nodding and saying "uh huh - that's normal"

First few days home

The picture from after the shower really should have gone here as I wasn't allowed to take a shower until Saturday. I begged Dave to let me take it early but he wouldn't have it. By the time it came time for my shower, it was the highlight of my day! Maybe I went overboard but not knowing how the shower would affect me, we set up this elaborate set up. Towel down on floor, metal folding chair on top with another towel on the seat and Dave in the bathroom with me just in case. It went well and felt so good!! I was afraid the water hitting my incision would hurt but it felt wonderful! He helped me a tad as lifting my arms up was still a chore and bending down to wash my feet was freeky! Sadly though, this was all I could do for the day. I was exhausted and hurting. We laid around watching TV the rest of the night.

I slept so good that night. I didn't wake up once. Maybe it's the meds, maybe it's the fact that I am not drinking as much as a horse who crossed the dessert anymore - who knows but it was nice! Woke up really wanting to go to church. Our former church, the one we got saved,baptized and married in finally bought their own building and this was their first service there. I really wanted to see it. I also know how many people from that church prayed for me and I wanted to show them the fruits of their labors. God is faithful, has been through this with me and I wanted to show people just how amazing He is! It is not by my strength I was able to go but God's alone.

Yet again, the shower and hour spent in church was all she wrote for that day.

And then there is home

I have yet to figure out how to put pics where I want them in the blog so for now - we must deal with it this way. This picture is right after my first shower, about 48 hours after surgery. Wow - that felt amazing!!

Dave says I have things out or order. I kinda knew that would happen so I am resorting to bribing him to tell his version. We shall see if he does it or not.

So, after I visit my new friend, they come in and give me the amazing news that I get to go home! YAY!!! The ride home was - well - OUCH! We live about 1 1/2 hours away from U of M and despite being in a roomy van and having pillows, it HURT!

I have two great danes, my adult is a rescue, 140 pounds of pure joy named Apollo. My puppy Duke is 7 months old and a beast at about 120 pounds. To say they are mama's boys is an understatement. They follow me everywhere. I was more than a tad afraid how they would react when I walked in. We blocked them out of the living room with chairs and I gave them love over the chairs in a safe fashion. My son Eric, who will get his own post one day he has been so amazing through all this, fed them and then I got to say hello. I missed my babies and was so happy to get my leans in.

The 4 youngest kids were at their Dad's and I plopped down, well ok more like crawled into bed. I had bought new pillows before surgery, including a memory foam one. Laying on my side is the only way my head feel remotely OK and this pillow is a life saver. I made a bunch of calls and that was my evening. With the couch in the living room and Mama in bed - Dave, the Danes and kitties were all very content to just lay with me.

It is now Monday night and I am caught up to Friday night - I'm getting there :-)

And it's done

This puffy picture of me laying on my side is just sad. My eyes are OPEN believe it or not. This was taken sometime during the day on Friday, before we left for the regular room. The picture with the matted mess of hair showing my scar was not long after surgery. Not sure what the gunk was but it was caked in my hair! Gross!! The first pic is with Staci - you can see how swollen I sill am, when my youngest daughter (7) saw it she asked where Mama was :-(

I am hoping to get Dave to guest blog his version of the story since I am missing a bunch of information. I can't even tell you the actual first thing I remember. I know I was in ICU, I know I was in the worst pain of my life and that my eyes were swollen shut. I had this granny turban looking bandage on my head and that made the swollen eye thing worse. It was tight and pushed my forehead down into my eyes, you know the ones that can't see as it is from being so swollen. I was told that my face was swollen from being on my belly for so long during surgery. The fluid decided to pool into my face. All I know is I couldn't even open my eyes and my left eye hurt so bad! It stung, light made it worse and was constantly tearing up. Of course every resident at U of M had to look at, with their silly little light pens. GRRR!! They said I had a corneal abrasion and ordered meds for 2 PM, this was early in the morning - why the wait is beyond me.

The pain in my head was not something that can easily be described. It was like I had two levels of pain. The outside pain I knew and understood - my poor neck muscles being stretched and manipulated while the Doc did his thing, the other pain - well, it made me wish I was dead honestly. It felt like glass was being ground into my brain and no matter how many meds they gave me, it wouldn't leave. The hours past by like minutes as I waited for my next dose of useless meds. Poor Dave tried to help but there was nothing he could do. This continued throughout the first night. My nurse Steve was so sweet. Not the brightest bulb on the planet but sweet as can be.

Morning came and I was starting to get pissed. Yes I get that I should be hurting after brain surgery but this was becoming too much. I cried, I snapped, I was mean to the nurse and my poor husband. He left to make calls and get food (or so he said, I don't think he actually ever ate) and it was like a light switched. The glass grinding pain was gone. Maybe it had something to do with the fact that the Docs were giving me Vicodin for pain. SERIOUSLY? I take stronger meds than that daily for my back and somehow they thought Vicodin would help after they cut my head open. Well, my meds were with me and honestly - I took them. When you live with chronic pain for 3 plus years, you know what meds work and which ones don't. And this lady knew the Vicodin wasn't gonna cut it. They brought me my breakfast, a tiny omelet that was child sized but it was the first food I had eaten in over 24 hours.

The nurse that replaced Steve was not as sweet. We had words more than a few times which I honestly think helped the next step of my recovery. He came in and told me it was time for a regular room. I was ready to leave ICU! The catheter came out and off I went to a new room, after I went to the bathroom of course :-)

Within minutes of getting there, I had the arterial line and the IV in my foot out - YAY! They left the IV in my left hand in but the bag was gone. We decided to go get somewhat real food from the cafeteria since I had not picked my lunch and who knows what was coming. The room itself was super nice. Somehow I got a private room, my own bathroom and even a shower. A nice chair for Dave to sleep in and all. I still wanted to feel as normal as possible.

So, I put my PJ's I brought with me on, after I washed up as best as I could in the bathroom and my trusty hoodie and off we went. We explored a tad and had lunch. It felt good to feel human but I paid for it with pain when I got back.

Dr. Sullivan finally made his rounds, up until this point it was his residents. He told me everything went well and he has never seen anyone need more drugs to knock them out like me. Finally some validation that what I have been saying all along is true, normal meds don't work on me. Good to know for future reference. He also said I could go home the next day.

A few hours later another resident came and I half jokingly said can I go home now since I'm eating, walking and on only oral meds and she said she would ask but didn't see why not. While waiting for my answer, this amazing new friend I "met" on facebook called and asked if she could come see me. She found me through a Chiari facebook page and we have spoke online the last few weeks. It doesn't get any better than someone who understands what you are going through! Staci came bearing gifts and even tried to brush my nappy hair. She is a blessing I thank God for!

More on the return home part later, I get tired very easy.

Pre-op

This is me, shortly before they took me in for surgery. Gotta love the happy meds they gave me :-) The funny looking thing on my forehead is the monitor they used to tell how out I was during the actual surgery.

We found our way to the admitting spot and after a very short wait, we were taken back and the prep began. Got the elegant gown on, IV in and then a guy comes over to put the arterial line in to check my blood pressure every hour during surgery and when he told me he was from anesthesia, I started crying. I couldn't help it. One of my biggest fears had been anesthesia. Having had two surgeries and a procedure where the anesthesia wasn't adequate, I was afraid. One surgery I was paralyzed but heard and felt everything, not pressure but the actual surgery itself. The other surgery, I woke up in the middle and pulled the breathing tube out, dislocated my jaw and had to be restrained. Needless to say, the concept of the anesthesia not working fully freaked me out.

The guy was so sweet. He asked why I was crying, with genuine concern in his face. I told him my story and he went to get me some meds to calm me down and brought the anesthesiologist with him. I re-told her my story and again, I see true concern. I swear the guy even had tears. They understood and had actual sympathy for what I had been through and assured me they would do everything in their power to make sure that didn't happen again.

They had a plan and even said they would wait until I was under anesthesia to put the arterial line in. They would use a BIS monitor to make sure I was actually "out" and I now sing the praises of this invention.

The meds calmed me down and they gave me more as they were taking me away. Next thing I know, I am in ICU - I didn't even remember being in the OR or the recovery unit. This was a huge blessing to me.

Despite the tears I saw in Dave that morning, he was once again my rock during pre-op. No tears or fear was visible in his face, even as they took me. He is the most amazing husband anyone could ask for.

Officially a zipperhead!

Once again, I am bad at blogging :-( I am done with surgery and even home. Since I am so far behind - this will take a few posts to get caught up on things.

The day before the surgery was better than I thought. I had moments of freaking out but I kept busy and that helped. we got the kids hair cuts, cleaned up and moved the bed downstairs. I won't be limited on stairs but figured this would be an easier way for me to re-coop. I must say, the living room looks silly with a bed in it but it is rather convenient. I think the next house will have to have the master bedroom on the main floor!

Morning of surgery I woke up too early, nerves were there but not as bad I had imagined. I puttered around until it was time to get Dave up. The ride down to U Of M was good, as long as we didn't discuss the actual surgery. Once I saw the actual hospital, I kinda freaked. My heart went in my gutt and I was so afraid. I wanted to go home. I wanted to be anywhere but facing brain surgery. Dave was my rock. He did cry that morning when we both let our guard down and felt the fear but other than that he was my trooper.

More later, my time spent upright is still limited to about 1/2 hour tops before I have to rest.

I am so bad at blogging!

I have a good excuse though - actually a few :-) As if prepping for brain surgery isn't enough to deal with, we ended up at Children's hospital with my 11 year old son last week. I had my pre-op appointment not too far from my Mom's so I decided to take the kids down there to see her. Who knows how long it will be again before I can make the 2 hour drive. While down there, Josh ended up doubled over in pain and a hospital trip became on our agenda. The original hospital didn't have a pediatric surgeon so they sent us to Children's hospital, via ambulance. After a long, sleepless night (screaming babies!) they told me his appendix needed to come out.

He was discharged late that night, which meant a long drive back to my Mom's to get my other kids and my Danes, then back home. In the two days we were down there, I got MAYBE 3 hours sleep total. I was done when we got home! The next day I re-cooped some of my sleep though with lots of napping and the slept like a baby last night, for like 12 hours with only one wake up. WHEW!

He is doing very well and hoping to go to school tomorrow. He hasn't had any pain meds in two days. YAY!

Now we are down to the final countdown. Surgery is this Thursday and I am not ready and ready at the same time. I want this done but am so afraid of the recovery :-( Sometimes information can be a blessing but sometimes, well, it can scare the crap out of you! I have read so many horror stories. Not much I can do but pray at this point.

My biggest wish is honestly that had let me do the back surgery first. My lower pain causes me more issues than the Chiari but the Chiari has me in danger of loosing the function of my right hand so it must be done first. Slim chance the Chiari surgery will help the lower back, a girl can wish though right? I just want my life back.....

In the still of the night....

In the still of the night I hear the wolf howl honey, sniffing around your door. In the still of the night I hear my beat heavy.....

Can you tell I am a child of the 80's? Whitesnake was not talking about fear in this song at all but when I woke up from my nightmare, that was what I heard. I know fear is the work of the devil, maybe that is why I heard that song. The wolf that is the devil tries to steal whatever he can and tonight, he stole my peace.

I am scared. My heart is beating fast and I am thinking I don't want this surgery. I have to, I know this. I just don't want the pain. Maybe I am just being a wimp but I don't want it :-(

During the day I handle it well. I keep busy, I make smart ass jokes and all is well. Everyone keeps telling me how strong I am but they don't see me in the still of the night. They don't see the nightmares, the fear and the trembling. I still have 10 days before surgery and I just hope I can make it through.