Fusions and Foul moods

Saw the Neurosurgeon yesterday for a follow up on the Chiari surgery. Everything looks good other than the muscle spasms which he says are not unheard of, even if they are not "normal" for two months post-op. I can't really complain, the neck doesn't stop me doing anything - it just gets annoying and sore. So no new news on the Chiari front - follow up in 3 months.

We did discuss my back however :-( He had said my degeneration was bad enough to be surgical but I never had the chance to discuss his thoughts on how to fix. Was kinda busy with the whole brain surgery thing. So, yesterday we sat down and discussed my low back. The MRI he is going by is almost 2 years old but he is suggesting a fusion of the L5-S1 based on my pain, limited abilities and past attempts at non-surgical treatments. He wasn't pushing the surgery but in the way I have come to know as Dr. Sullivan - he listened and said it was up to me to decide when and if I have surgery. He gave me the risks and his stats on outcomes and left it up to me.

I did have the MRI also last night that the pain clinic Doc ordered. Now I wait for him to call me and schedule the injection. I am hoping to avoid surgery and recovery during summer. I did take a peek and the disc looks bad. It is dark, thin and jagged. It was easy to see why I hurt even though I am no radiologist.

More of the waiting game now and this (or maybe just life) has me in a foul mood lately. I find it harder and harder to see a life for myself, one that doesn't hurt anyways.

Plan in place - well sorta

Saw the pain clinic Doctor yesterday. I saw Dr. Chiodo at U of M and he was a nice man, short on words but seemed genuinely concerned for my well being (for the most part). I have no reflex in my left ankle which shouldn't surprise me, it is the one that gets the pins and needles and numbness most often. In fact at times this foot doesn't move when I tell it to. He said my DDD has caused a nerve root to trigger muscle spasms in my back (gee that's just what it feels like) but since it is a nerve causing it, no meds will help. So - steroid injections it is. AFTER I get a new MRI. The current MRI is a year and a half old and things are MUCH different. He wants to know what he is dealing with and I am glad to get the new MRI as I am curious and I would rather he have a clue what he is dealing with. Sadly, this means I must wait for relief. His answer to my question of how do I get by until was for me to avoid the position that triggers the spasms - ummm - yeah that would be vertical :-(

So MRI ordered for next Tuesday, which is cool because Ann Arbor is an hour and a half away and that is the same day as my Neuro follow up. So, I will stay in the area and visit my Mommy in between appointments :-) I did address the fact that the last steroid injection was like I was in hell. They did "sedate" me but I felt everything! It felt like they were burning my nerves in the back of my leg. Now that I have been through a surgery with a Doctor who knew how to monitor me, I can tell this Doc that I need more meds than a normal person and he can verify this with my Neuro. The Neuro Doc told me he has never seen anyone need more meds during a surgery than me. He tried to look up my records but they wern't there yet so he will contact the Neuro and go by what they gave me. YAY! No torture during the procedure :-)

So, in the meantime - I am just stuck being a couch potatoe :-( I want my life back!

Found another four letter word - FEAR

Well the cold has finally let up for the most part. I still have a slight cough and some stuffiness but nothing like it was thank God! Back is still an issue, seems to be getting worse everyday :-( It is so bad, yesterday was my birthday and Dave offered me a nice dinner to which I had to say no, I just couldn't do it. I did enjoy my day though. I watched a movie with a good friend - Blindside - GREAT movie! We had banana splits with the kids followed by a few games UNO. Dave got me a massage and pedicure for next Thursday plus new PJ's! YAY!

I decided yesterday to try a hunch. A long shot but I remembered one physical therapist saying he hated Soma, he said it caused rebound muscle spasms. Since that is what it feels like is going on in my back (well, more like a charlie horse than a plain spasm), I decided to try stopping the soma. Surprised to say, my neck doesn't feel a ton worse. I can feel a tad bit of stiffness but nothing major. No changes on the back but we shall see. If he is right, it will take a few days to notice the difference. If it isn't helping me, I don't need it anyways. One less med in my system is a good thing.

Now - on to the fear. I guess I have this thing with four letter words. Fear is the latest. I find myself very scared of the results of my surgery at times. So many horror stories, sometimes it is hard to believe that ALL my Chiari symptoms are gone - yet they are. This morning I noticed an odd one returning and it has me scared. It's a silly one really. It wasn't even on my list of symptoms. For the past year and half, I have had this sound in my left ear - like there is water in it. I assumed it was from my ear surgery 13 years ago. I had a cholesteotoma and had a tympanomastoidectomy with two new hearing bones. Funny thing is - the day after surgery I noticed the sound was GONE. Seems it was spinal fluid I was hearing, not an odd symptom of Chiari - just one I didn't know was one of my symptoms. So - here I am this morning - I touch my ear and I hear that sound. Faint, but it is there.

My heart sank in my chest almost instantly. Damn Chiari I thought. I am going to be one of them I thought. It is never going to end I thought. I will never get my life back I thought. How fast I forget what I have learned. God has worked so hard teaching me to trust Him in this and I throw it all out the window from one stupid noise in my ear. It took my over an hour to realize it could be the fact that I have this major cold thing going on. It could be the spinal fluid just shifting. It could be NOTHING! yet I was so quick to assume the worst. So quick to give in to the fear. Fear has no place in my life! Silly human!

I feel for the poor mortals

I have been cocky when it comes to my health. Not my conditions, my regular health. I *NEVER* get sick! I am talking the flu and colds. When I do get them, it is usually fast and furious. A few horrible hours and then I am back to normal. I have never understood horrible colds or the flu that lasts days. I have not experienced them. Until now.

I am still VERY sick! I live on Nyquil. This cold has kicked my butt and taken my name for sure. When I cough, my head hurts so I am living on Nyquil. The gold standard for colds, you'd think after all these years they could make it taste a little better. At least it works. I am weak, my chest and head hurt and I am a big baby! Cranky, needy and just not fun to be around. Now I get it! Dave even said he has never seen me this sick in the six years we have been together. Not sure if the surgery itself has made me more prone or the steroids but either way - being sick SUCKS!!!

Finally heard from the pain clinic. I have an appointment Tuesday at 5:00. I am glad I get to talk to the Doc before the injection, even if it means waiting a few. Of course I say that now since I am so sick I can't do a thing so the back isn't an issue.

Trying not to get down. Trying to remember this is a season. Trying to hold out hope that it gets better.....

UGH - get me a tissue!!!

As if I don't have enough health crap going on, I now have a fierce cold. Stuffy nose, congested in the chest, sore throat - the whole deal. I haven't had a cold this bad in years but this doesn't surprise me, having been on prednisone for more than a month.

Made it through an hour of church Sunday, 1/2 hour more than the last time I tried so I guess that's progress. Sad part is that it was my back that made me leave early. It does end right? I am at the point where just taking a shower brings on one of the back fits and I am DONE for hours :-( Still waiting for the Doctor at the pain clinic to review my file so I can get in to see them. It cannot happen fast enough. I REALLY want a new MRI of my lower back, the last one was 1 1/2 years ago and things are VERY different now. The pain is way stronger, the weakness and tingling is new and now the pain is higher up my back. The plan is to get one at the 3 month check-up, MRI's of my entire spine and that should suit the Neurosurgeon until the back surgery. He wants the MRI to be within 6 months of surgery. If the steroid shots do not work, I will not make it until fall for surgery. I have NO quality of life as is. I cannot do anything. I can't even sweep a room :-(

Had a super nice surprise yesterday. My oldest son is staying with us for a few days. This may be the last longish visit we get before he goes off to basic training. Daniel is a Chaplain's Assistant in the Michigan National Guard. It sure is nice to have them all under one roof again.

Not EVERYTHING is Chiari

Just rambling now. When you have a disorder as odd and invisible as Chiari, with symptoms wrecking havoc on virtually every part of your body, it is easy to blame everything on Chiari. For so long, I blamed all my symptoms on a multitude of oddities. I had an "excuse" for every symptom since the Doctors didn't seem to have a clue, now I am the opposite. How does one balance it all? Yet again, that word is this blog.

Yesterday I woke up feeling like a truck hit me. My back hurt, I ached all over, was exhausted and had hot/cold flashes all day. Of course I said it's recovery or Chiari related. How easy it is to blame the disorder. Until my 11 YO, who didn't know of my temperature issues complained of the same symptoms. So, a simple bug and here I was blaming Chiari. Not a big deal, just made me wonder. Does it ever go away? Will I ever have a day where that word doesn't enter my head? It must, I did have a few hours where my neck felt normal. First time since surgery where I couldn't feel any pain or any trace of surgery. So it must - right?

I believe in Vampires

Odd title for a Chiari blog written by a Christian but it is the truth, in a fairy tale kinda way. If you are only interested in Chiari info, don't both reading more - this isn't about Chiari for once - it's about life as I see it. Or at least one aspect of it.

When the Twilight series first came out, I resisted. It's vampires after all. For one I am a Christian and for two - well, I grew up on Dracula and there wasn't anything sexy or romantic about those movies to me. My amazing hubby reminded me that I was a youth leader at the time and to connect with teens, one must understand them. So - we rented Twilight. I wasn't expecting much honestly. What I ended up with was falling in love with vampires and annoyed at the Christian community. How the Christian world had let the vampire world corner the market on a movie of what it means to be a man and be in love was beyond me. I was annoyed. Edward LOVED Bella. The deep, primal Love that I believe can only come from God. How do I know? Well, I have it. I HAVE that fairy take love. I am safe with Dave and for us gals, isn't that what it REALLY boils down to?

Sure we have to work at our relationship but I honestly have a man who would die for me and I have no doubts. The vampire world portrayed that so well and so many Christian kids would never see the movie because - well, it's a vampire movie. So sad.

I struggle not to get sucked into two worlds I am surrounded by. One world is a wicked world, ruled by the flesh with no signs of God and no submission to Christ. The other is this bubble that has their children NOT interacting with the outside world for fear of contaminating them. Being a woman who is one giant ball of contradictions, one would think balancing raising my children to be IN the world but not OF the world would be easy, but it's not. I struggle daily. So, I bit the bullet and decided to let them all watch it me. I think we can learn a lot from the series.

Both Jacob and Edward love Bella to the point of she comes first, family means more than anything and learning to be who you are sometimes means hurting the ones you love. Imagine if that movie had both Edward and Jacob as Christians? Talk about impact!

Trust is a 4 letter word

Spelling and math have never been my best subjects. If you read my blog, you know by now that even spell check can't help me and when my daughter who is in 4th grade asked me for homework help and I saw it was fractions, I had to call my 7th grader to help her. That being said, I do realize there are 5 letters in the word trust BUT where I come from - when things are rough, four letter words are used. So - trust is a four letter word to me today.

I have no choice but to trust God's plan. Yet again I find myself, reminding myself, HE is steering this ship, not I. Things will happen in HIS time, not mine. Healing will come in HIS time, in the way HE desires. It is not an easy thing for me to grasp. Yet again, the spirit is willing but the flesh is so very weak.

Another BAD back day for the books. I am positive something new is going on. This pain is worse than any pain I have had in the back for the 4 years and it is just different. When I walk, the back freezes up with pain and when I first stand, my legs go numb. My legs are getting weak, to the point I am not sure walking is an option at times. Shopping, even with an amigo and an amazing teenager to help me, wore me out! But - I did it! One less thing I have to ask Dave to do - YAY! Made my way through dinner, leftovers so no biggie. Even went to secretary of state to deal with some items. BUT - the back - WOW!

Heard from the pain clinic finally. I called and she said she is waiting for the Doctor to email her back. I guess he is some big-wig Medical Director at the pain clinic and VERY busy but when one of the Docs from Neurosurgery asks, he squeezes people in. He has to review my file and see if he wants to see me first or just go ahead and schedule the injection. Hubby hopes for the injection, I would kinda like to meet him before he pokes my spine but will take what I can get - living like this isn't an option.

I adjusted my meds beginning yesterday. Prednisone taper begins, which means sciatic pain will return and it was time to increase the Neurontin dosage :-( Originally I was going to stay at the lower dose as the neck is doing wonderful but have decided to try the higher dose to see if it helps my back. Sucks because of side effects :-( Trade offs are never fun.

The devil can kiss my ass!

To say that yesterday was a roller coaster day would be putting it mildly. The ups and downs of life can wear ya out if you don't have hope! I struggled all day to stay positive and had a grip on it despite some situations that happened that could have easily taken my hope. By the end of the night, I was just ready for bed. Getting ready to get in the shower and my husband tells me a story. A conversation between him and Eric - my 18 YO. Well, if you knew either of them you'd know they are interesting characters to say the least and I was cracking up. I haven't laughed so hard in a LONG time. Good for the soul right? Well, until I felt my head explode. OK not literally but that's what a Chiari headache feels like and I was now having my first one since my surgery. My vision was altered in the shower it hurt so bad. So here I am, back is hurting so bad I can barely move, head pounding and hope leaving. My first thought is - OMG - the surgery didn't work and I am doomed to have these headaches forever.

How quickly I forgot the good. How fast the fact that EVERY symptom is gone escaped my memory and all I focused on was this one headache. Luckily, Dave was the voice of reason. He reminded me I have a Dura patch, one who hasn't had to stretch a ton since laughter hasn't been happening. He assured me this was different. I tried to believe him but I could feel all the hope drain right out of me. When I laid in bed, I could literally feel the hope draining. I asked him to put some praise music on and as I focused on God - the pain just left. Dave was right, this was different. This wasn't a Chiari headache, they never left that fast - they lasted days not minutes.

The whole point in this is a reminder of where your focus is. My focus was shifted so easily. Knowing that God does have a plan and I have seen Him working on me and in me left me all too easily. So, I told the devil he can kiss my ass. He can't have my hope. My hope is in Christ who is bigger than any negative crap the devil can throw at me.

Today's plan is - well, I don't have one yet. I am still trying to gather my thoughts. I am still amazed at how easily a silly human forgets and how gently God reminds us, if we only listen.

New Sleep Schedule

before the surgery, my sleep schedule was NUTS! Insomnia was so bad, I would get just a few hours a night. Luckily, I can sleep again! I do have this odd pattern though and I am trying to figure out if i like it or not. It may be just odd enough to keep me happy and out of trouble for awhile!

I wake up early (I have never been a morning person!), between 4-6 A.M. and need a nap before long. I do get to see Dave off to work and the kids off to school but am usually back in bed by 10-11 A.M. and sleep until 3-4 P.M and then bed for the night by 11 or 12 P.M. Odd but it seems to work. I get to do the morning thing with the family, have some quiet time before any of them wake up and sleep during the hardest part of the day. I get bored easy so I have a tendency to do more than I should. During the day is when I usually want to do stuff so sleeping through that isn't the worst thing in the world I guess :-) Plus if I do some small errands in the morning, my nap helps me recover before evening. I guess this is the pattern I shall keep for a while!

Yesterday wasn't such a great day. Good news is that it wasn't my head or neck but my lower back again. My puppy is a GIANT (156 pounds at 8 months) and hasn't been on the leash much because of winter and me being sick. Manners needed some work so did socialization. He tends to be afraid of everyone and barks (and then hides behind me). Two of my kids had a dentist appointment so my oldest daughter was at the school by herself. I decided to walk Duke up to the school to get her. I have walked farther than that since surgery with no issues so I assumed I would be O.K. Mistake #1. I made it almost all the way when my back just FROZE and it hurt so bad I couldn't move. Not even one step was an option. Once I rested I was able to hobble the two houses to my home but that was insane how bad that hurt. It kept doing that all evening, if I walked too many steps in the house it would freeze up and then the tingling started :-( I HATE THAT! Good news is my puppy did wonderful! He was happy to let the kids pet him and loved the attention as well as did wonderful on the leash for me. He was giddy all evening, I swear I haven't seen a goofier puppy!

I was able to fumble through dinner, easy dinner of frozen taquitos, peaches, fries and corn dogs (my kids were in heaven!) but none the less I made it through dinner. This is one of my few simple, daily goals. Dinner, laundry, a dog walk and one small house chore or an errand are my daily goals. Some days I make it, some days I don't and it's all good. Tonight's dinner is Chicken Alfredo (I am cheating - using packaged Alfredo with noodles and then adding cooked chicken breast) with rolls. Simple but it gets me cooking again :-) I plan to cook the chicken before my nap in hopes of even being able to do clean up from dinner. Hubby is still sick with a cold and he loved coming home and just resting so much the other day - he deserves that!

Doc update

Forgot to update the Doc stuff!

I put in a call to my surgeons office to get some a few items clarified. First of all, I asked for a referral to the pain clinic for the steroid injections for my back. My prednisone taper begins tomorrow which means the sciatic pain will return and I am nowhere near ready to tackle the back surgery. She said it can takes up to 4 weeks to get in but she will ask if they can squeeze me in sooner. I pray for God's favor! I have a follow up with my Doc in 3 weeks and it's up to me if I up the neurontin dosage. I am down to one or two narcotic doses a day, by evening the pain is intense. The sharp pain that sent me to the ER and the reason for the neurontin was ordered is here this morning so I may have no choice but to increase the dose. I will rest most of today and see if that helps. I was hoping to stay at the smaller dosage as it has less effects on me than the higher dose. I can live with the side effects, I would just rather not :-(

Balance - can I buy this?

I have never been a fan of balance. All or nothing, there is no middle ground. I *MUST* find middle ground. I do not want to baby myself nor do I want to over-do things and end up in pain. Hence, I must learn balance. Yeah I am very sore this morning. Not like last week in any way but still more sore than I wish to be. Yet again, I did too much. I can't seem to understand what I can do and it is frustrating. When I am doing things, I listen to my body and if it says stop - I listen! This is frustrating though because I get no warning. I feel fine then bamo - I am sore as can be. It's a process is what I keep telling myself. No regrets from yesterday. I needed to see that I can do the things I so long to do, even if they hurt me today. To me, this means down the road I will be able to do them without hurting. I need to remember it hasn't even been 5 weeks and Doc said 6 months to recover from this surgery. SIX MONTHS!


Today's plans are not too bad - two kids have a dentist appointment and my oldest daughter is doing jump rope for hearts tonight. This means - frozen dinner :-( Kids love it, Mom hates it! lol I will rest most of the day since I am so sore. Again - it's only been 5 weeks - I keep reminding myself. It is supposed to hurt still, this is normal and WILL go away.....

It's the simple things in life....

Today was a good day. I was able to shop for dinner, make dinner, serve dinner AND clean up from dinner - all by myself :-) Sounds silly but it has been so long since I was able to make it through these tasks without Dave helping - it was amazing! Dave has a head cold, hence the chicken soup , so I am very glad he didn't have to help me. The typical day is if I am lucky I can make dinner but by the time it is served, I am so done - he gets stuck with cleaning up. Mind you, I took a long nap after I made dinner - my back was killing me but still. THIS is progress. taking care of my family is what I have wanted. My wish and prayer was granted today and this makes me happy......

All in HIS time

I have learned that I cannot control my life. You would think that I would have learned that well before the age of almost 39 but sadly, I think I finally have it figured out. If we heal, when we heal and how we heal, is in God's hands as far as timing, not ours. See I have always been independent, strong willed and self sufficient. Leaning on or depending on anyone was something I had given up on long ago. It never worked, so I trusted my own actions to get me where I needed to be. Silly human.

Reading my Bible the other morning and I stumble upon this verse - 1 Peter 5:10 says "And the God of all grace, who called you to His eternal Glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast." That was a hard pill to swallow, even for someone who swallows a ton of pills daily. I had to learn something during my pain and it was to lean hard on the only one who can change me. Yes, submission to Him even is still a struggle. I may have come a long way but I am nowhere near where I need to be.

If I had only trusted. I tried and I guess for the most part I did. All along I have known that this path was a God thing. My diagnosis was a fluke, I ended up with the Doc I didn't want myself and so many other things that just don't add up in the human world have proven to me that God is steering this ship. If God is steering - why did I fear? I am human and weak. The spirit was willing but the flesh was weak. Now that the flesh feels better, the spirit can see what was in the works.

Praise God He is in control and I am not! I have no clue what I am doing here. I fumble daily and without His Grace - well, I'd be lost. This morning I am singing a love song to my Savior.....

Have I mentioned how AMAZING my surgeon is?

Interesting title given how I have felt the last two weeks. About two weeks ago, the pain changed. I called the Docs office and they said it was normal, gave me a list of symptoms to be careful of and that was that. Then - the meds STOPPED working. Don't get me wrong, they have never taken away 100% of the pain but they made life tolerable while I healed. Well, when they just stopped, I got a tad worried. I looked online to see max doses of the narcotics I was on and upped the dosage myself (bad I know). That didn't work. I stopped all narcs thinking it was rebound pain and I was addicted. That didn't work. Finally, after about 9 days of wanting to die, regretting my surgery and in tears every day, I broke down and called the Docs office again.

Spoke with his nurse, who knows me and she was surprised given how I was home the day after the surgery and how amazing I was moving around at my first follow-up. She never dismissed my pain but admitted her hands were a tad tied in what to do. There wasn't anything stronger she could call in for me. We decided to try a different narcotic, in hopes that maybe I had built a tolerance to the percocets and a different narc would help. I was instructed to call back if that didn't work and then I would need to be seen.

Well, a few hours after I took the vicodin I knew - we were going in. It didn't help at all. Called the Docs office and they said to head to the ER and they would call ahead and let them know I was coming in. I have never been to an ER just for pain, nor have I been to an ER when my Doctor told me to so I expected to be treated nice. Well, that didn't happen. I was shocked at how poorly I was treated, it is The University of Michigan for goshs's sake and they were all so amazing to me after my surgery. The nurses ignored me, the Doctor was rude and condescending and I was ticked!

They ordered a CAT scan, gave me joke meds that did nothing and then we saw one of the resident's from my surgery. He came in and said that I was officially under the ER care and I told him how rude they were and he said not to worry - they had a plan. Within minutes, the idiot Doctor was nice to me and told me I was being admitted but he didn't know why. While i was relieved that I would be back under my own Doctor's care, being admitted after a CAT scan scared me. They threw out several options when I got there - aseptic meningitis, cervical instability and a spinal fluid leak. None of which would be good answers. I was scared, annoyed, hungry and wanted to smoke.

We finally got upstairs after about 3 hours (they told me some people had to wait 23 hours so I guess I was lucky?) and was back on the Neuro floor. Super nice nurse. Resident came in again, said the CAT scan looked good but they have more tests ordered and new meds. They gave me some serious narc and sadly, after an hour and a half, the pain was back full swing and I was miserable. CAT scan came at 2 AM for a contrast scan and I slept an hour at a time all night. By morning I was not a happy camper. The resident came in and said they cannot see any reason for my pain and that's about it. When he left, I saw no hope. I thought - I am going to be one of the horror stories I read about of people who have Chiari and have no life. I was in tears and so sad.

Out of nowhere a Doctor from the pain clinic came in. Hmmm - maybe there is hope? He did an exam, asked me a ton of questions and said he thinks my pain is all from the tightness of my muscles and skin and my nerves regenerating. He changed ALL my meds and he really seemed to think he could help me. Hope. YAY! Saw a few more people from my Doctors team as well as my actual Doctor, all just checking on me. Amazing how many came to see me. I was really treated like a queen. My pain was not dismissed. I was not treated like I was drug seeking nor was I treated like living like this was optional.

The best news was that everything from the surgery itself looks amazing! That was a huge relief. With all the pain I had, I was sure something was wrong. So, I was sent home with new meds and hope.

I woke up the next morning and that sharp pain was GONE! Praise God the Neurontin and Lidoderm patch worked! Best part is they are not narcotic so addiction and tolerance are not something I have to fear. I hate being on meds but really hate being on narcs. I have had addiction issues in the past and that is one of my biggest fears - being able to control the pain without getting addicted. Again - Praise be to God - I have been on major narcs for two months now and no addiction :-)

So - all is well once again in my soul. I do not feel 100% but I have not cried, nor have I regretted the surgery. I am just amazed at how well my surgeon handled this situation, how the pain clinic docs figured it out and how the meds worked!! I am one happy camper who has her hope restored. I enjoyed an amazing day with hubby. We went to breakfast, dinner AND a movie! What a treat for us.

The pain clinic Docs have me hopeful for when I have to stop the prednisone. I am on steroids for my siatic pain - it is the only med that works but you cannot be on that long term. The plan is surgery down the road to fix the back but I am nowhere near ready so Dr. Sullivan had said before surgery that he would refer me to the pain clinic to handle the back pain until I could do surgery. Maybe they can actually get it under control and I can enjoy my summer before I go through this again?

Wishing I had amazing news - really I am

I did what I always do before something major, I prayed and I researched like crazy. I do not do well with the unknown. I read stories. I read lots of stories. Somehow - I thought I would be different. I keep coming back to this statement don't I? It just blows my mind that it has been almost a month and I am still in so much pain. NOT WHAT I HAD PLANNED!

The meds no longer work. Over time, the body develops a tolerance for narcotics, meaning they don't work and you need stronmger ones. So this week I found myself facing a decision. Wean off all narcs and pray I could handle it or ask for stronger ones. At 4 weeks post-op, asking for stronger wasn't my first plan. I should be needing less meds not stronger ones. This isn't working though. I am back to being able to do nothing. I am back to crying many times a day due to pain. I am finding myself humbled by the scalpel and will call the Doc today and ask for something stronger. What I refuse to do is let this take my spirit. THIS is what I stand on this morning.

God has not brought me this far to leave me hanging. I know my physical pain is irrelevant, what is in my heart is what matters. I praise God this morning, through the pain, thanking Him for all He has shown me through this. I woke up in pain, after going to bed crying from pain. I put praise music on and am choosing Him this morning. I am choosing His healing. It may mean physical or it may mean emotional. Am I prepared for whatever He has planned? That is the question of the day for me.

The song ringing in my ears this morning starts out like this "I am not skilled to understand, what God has willed what God has planned. I only know at His right hand, stands one who is my Savior" Is that enough? It should be. The amazing Grace song was wrote for ME I swear. What a wretch I was before I found God. But He saved me, He changed me. He saved me from myself. He showed me a Love I didn't think existed. He showed me Mercy when I deserved death. I thank God for this journey, in all the pain I have right now - I thank God I am where He needs me to be. I pray to have my heart opened to what He needs me to learn.

I do beg for relief though. enough relief to let me keep my heart focused on Him where it should be. It's not about me - this is my mantra today. It is about a Savior who died for ME, a slab of a human, useless yet used by Him for His Glory. There is more. My story isn't finished. He is not done using my life, using me to Glorify Him and to show others His amazing healing powers. So, on this I stand - there is a way out. The end is near. It's there - even when I don't see it.

It's a checklist kinda morning!

Was having a bad day the other day (gee that's shocking huh? lol) and was trying to lift myself out when I sat down and was thinking how many of my Chiari symptoms are gone. Figured I would make a list. So far, here are my pre-surgery symptoms that are now GONE!

~The dreaded Chiari headaches
~The constant thirst, which also means the constant bathroom trips
~The nueropathy in my hands and arms
~The burning in my leg muscles when I walk up stairs
~The squishy sound in my left ear
~The insomnia
~My hands and feet are warm for the first time in - well, for the first time I remember

I also decided to make a list of things I *CAN* and have done now, just past 3 weeks after my surgery.

~I have gone grocery shopping alone
~I can drive (not distances, but I have drove 45 minutes once!)
~I can cook a meal again
~I rode my motorcycle 3 whole blocks!
~I can walk up to an hour

Mind you, any of these activities wear me out still and I need a nap but I *CAN* do them! I do tire very easily and am sore a lot but I think I see the other side finally. YAY!!!

I Hope

I wrote this out the other day, internet was being wiggy and I forgot to publish it. I wish I had my old sense of style and flair with words. Once upon a time, I could put my feelings into words so easily - now - I read what I wrote and it's just no longer there :-( I wrote this with hope and yet when I read it back, it was depressing. Ah well - It is what it is, it's what I feel so it shall be posted....

When facing something crummy – sometimes, all you have is HOPE. Sometimes, that’s enough.
One day I hope…..

I hope to say yes or no based on the calendar alone when my children ask me if we can do an activity down the road, not to say “we’ll have to see how Mama is feeling”

I hope when I sign online in the morning to greet my husband who is at work, to say I am fine when he asks, “how are you?” Not to wonder if I should lie to protect him or answer the truth, which is usually - “I hurt”

I hope when I open my kitchen cabinet, I won’t see all the bottles of almost useless medicines that keep my symptoms at bay, or at least pretend to.

I hope that when I see my husband watching me, I no longer see his pain. The pain he has watching ME be in pain.

I hope my children stop asking how I am feeling. That they will just assume, like normal children, that Mama is fine.

I hope days go by, weeks maybe even where I don’t say or think of the word Chiari

I hope none of my children have been dealt the nasty genetic card that carries Chiari

I hope to not cringe when people ask me how I am feeling. What is the answer to that anyways? They are usually just being polite and don’t REALLY want to hear how bad it is but is it rude to lie? I hope to answer I am well and MEAN IT!

I hope to learn the lessons God has set forth for me during this time of trial.

I hope to NOT be the same woman I was when I had my surgery, to be better, missing pieces of my body but gained pieces of my heart back

I hope to be held by my husband like I won’t break.

I hope to be able to be the big kid I am, the active, playful, energetic, crazy me I know – not this sick, old, depressed person who has invaded my body

I hope my Grandchildren-to-be will not know me as the Grandma who is sick but the Grandma who is fun and can play with them

I hope to see Duke doing pet therapy, me as his handler – sharing the joy he gives me with others

I don’t have many answers yet but I do have HOPE and for today – HOPE is enough…..

It does eventually end right?

Coming up on three weeks since my surgery. Many symptoms gone, most in fact and even a few I didn't think were Chiari related yet I am complaining yet again. I am tired of recovering. I am tired of being tired and sore and being able to do - well - nothing! I know, it takes time for the body to heal and all that jazz but I am bored. My mind isn't able to focus like it used to just yet. Not sure if it's recovery or meds but focus isn't my strong point so I can barely even engage my mind, yet alone my body. Both are revolting. I am complaining.

Had several bad days in a row and that's never good. I was getting really worried something went wrong, the pain just seemed to change one night. It was sharp and throbbing. Finally put a call into the Doc who seems to think all is well and this is just part of recovery. GRRRRRR!!! Glad it's not something wrong but ready to move foreward. This is making me re-think my back surgery plans. Maybe June is too soon. We shall see.....

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.

U of M it is!

Went to see Dr. Sullivan at U of M and REALLY liked him. Surgery is set for February 11th. and pre-op is next Wednesday. I will be in ICU the first night, regular room the next and if they can control pain, I will go home on Saturday. I am a fighter and have every intention of fighting my way home. Of course I say that now, before I have an 8 inch incision in my head/neck and have bone missing from my head and neck along with a ton of muscles being cut in my neck. Two weeks from tomorrow - YIKES! I can do this right?

Ironic part is when I called Cleveland Doc to tell them I have chosen a different Doctor, the lady I spoke with cut me off mid sentence and was very rude. Confirmation maybe, I dunno but I am glad I didn't stick with that Doctor. I have a peace. That doesn't mean I don't have fears but I am comfortable with my decision.

What a difference a week makes....

Last weekend I was on cloud 9, knowing I had found my Doc. I should have expected the roller coaster that has the name Chiari would go down at some point :-( Uneasy quite a bit last week, for reasons I am not sure are valid or not but it's MY brain, my health so I am not sure I have to have reasons.

I was told by the Doc's office when I left Cleveland to fill out this stuff online, a survey type asking all these questions regarding my health. This is what they use to "map out" what tests need to be done before surgery. I blanked out on how long it takes from that point to get a surgery date. Maybe it's just me but between me and my 6 kids - I have scheduled MANY surgeries, I have never had to wait to schedule a surgery - this whole concept is just foreign to me. So Monday I call the Doc's office to see how long it takes to get it scheduled. Simple question really. They took a message and assured me this is how it's done.

Wednesday I spoke with a woman on facebook who also went to see Dr. Di for her daughter - she left with a surgery date. Same Doc, same procedure. It just wasn't sitting right that 1) they STILL hadn't called me back and 2)why would office procedures be different for two patients? So Thursday I call back and they were - well, annoyed with me.

She kept bringing up the fact that I had called on Monday. Yup, I did and I am stalking you at this point because - well, you haven't called back and it's now Thursday. In my head I am wondering - what if this were post surgery and I had a question? I explain that I am not trying to be a pest, I just want to know how long I have to wait to know my surgery date. I carry my phone everywhere, I don't want to miss that call. I have anxiety - is it Chiari or just me? Not sure but it doesn't matter. What I am asking for isn't unreasonable. Just keep me informed on how this works, simple. She assures me this is the process and someone will call me back by the end of the day. Despite the fact that this clearly isn't always the process since I have spoke to another patient of theirs, I am not asking to deviate from protocol -I am simply asking how long does it take to have someone call me with the date? Weeks, days, a month? It is now Monday and guess what? Nobody called me on Thursday - or even on Friday for that matter.

Initially I thought I wanted 4 opinions - "experts" in PA, OH and WI and a somewhat (so I hear) experienced but not labeled expert in MI. I had them ranked in my head, knowing it may change once I hear what they have to say. The WI Doc's office was 1rst or 2nd on my list, until they wouldn't return my calls once they got my MRI's. The office had assured me it took only days for that Doc to review films and decide if I was a surgical candidate and they would call me either way. I called twice (weeks apart), never got a call back either way so I crossed them off my list without even going. When dealing with major surgery, states away - the phone is all I have post-surgery. I live in a small town with a crappy E.R. If something goes wrong - is this how they handle it? Ignore you? If so, going to my local hospital isn't a good option since they wouldn't even know what to do with me.

Maybe I expect too much but when I am looking at throwing $100,00 at a Doc, who I am trusting with my life - I expect a call back when they say they will call back. Perfect example - about a year ago I was having ear pain again (major surgery 13 years ago to remove a non-cancerous tumor). I saw an ENT who said I needed another major surgery, there was a hole in my eardrum. I cried. I scheduled the surgery and a few days later called the office with a simple question about an antibiotic. The woman I spoke with was rude and accused me of drug seeking when I wasn't even discussing pain, only the antibiotic. I sought another opinion (at U of M ironically) and was diagnosed with TMD and told to stop chewing gum. My pain left. There was never a hole and I never needed surgery! Was it God steering me? I have to wonder at this point.

So, here I sit, wondering if God is steering me away from Cleveland. The U of M Doc was last on my list. I never canceled my appointment though, for some reason, even when I just "knew" that the Cleveland Doc would do my surgery. My appointment is this afternoon with the U of M Doc.

More irony, I spoke to an old friend I haven't talked to in months on Friday and her daughter's best friend has Chiari and had the U of M Doc do her surgery a few years ago. She was thrilled with him. Hmmmm - makes ya wonder.

Of course I try to filter everything through my fears. Maybe I won't 100% trust any Doc because I really don't want brain surgery. I want to be symptom free so I SAY I want the surgery but the reality is - I don't want to have Chiari. Maybe I am just scared? Maybe I expect too much? Or maybe God is steering once again? We shall see.......

Is it March yet?

Trying to be patient, but this has never been my strong point honestly. Still waiting for Cleveland Clinic to call with a surgery date. My appointment was Thursday so it hasn't been long, again I am just not patient. I want this done with, I want my life back, I want off these darn meds.

Dr. Di doesn't handle pre-surgery meds so it's up to my regular Doc to manage me until surgery. Seeing as he is clueless on Chiari, how is he supposed to help me? He is a wonderful Doctor, I drive over an hour to see him and I HATE driving. But - he just doesn't know, so we guess. I am unsure if my newest worsening side effects are Chiari or meds.

Last night I couldn't sleep. Slept an hour and half total. It is now 2:30 A.M. and guess what? I am still awake :-( I am EXHAUSTED but cannot sleep. If I drift, within minutes I am awake again. Is it the new meds or my insomnia getting worse? I am on prednisone for my low back/sciatic pain, neurontin for my nerve issues, Excedrin Migraine for headaches and percocet for pain. Half are like uppers, half are like downers and I am scared my body is revolting.

I am having somewhat of a life with the new meds, minus the sleep issue. Was able to shop, clean, run errands and hang with the family today. That is nice. being a Wife and Mom is good. Not sleeping however is messing with my head. I am still for the most part positive.

I Love what God is showing me through all this. My earthly body is irrelevant, my heart is what matters and He is working on that daily. I am learning to trust and to be dependent. I have no choice really as I could not even pretend to face brain surgery without God. Having had two episodes where the general anesthesia didn't take fully or wasn't enough - I should be so scared but overall, I am hopeful. Praise The Lord!

Finally found a Doc!

WHEW - what a crazy week it has been. I had an appointment in Pittsburgh on Tuesday and in Cleveland on Thursday. So, of course I had to turn this into a mini-vacation :-) My friend went with me and we left Monday morning, flew out of Flint and into Chicago. I had a choice between a 2 hour lay-over and a 7 hour lay-over. Having never seen Chicago, of course I chose the longer one! We went on the subway, saw the Sears Tower and had Chicago style pizza - WOW on both accounts. The skydeck was amazing and the pizza, well, I am not sure I can ever eat normal pizza again! We finally got into Pittsburgh around 11 P.M. Monday night.

I was amazed by the hills in PA. Michigan is flat, hills don't exist so seeing houses on the hills just blew my mind not to mention what it looked like just driving around to get to the hotel. Tuesday morning we went to the top of Mount Washington and enjoyed the view (and took pics of course!) and then headed to meet with Dr. Sekula. After waiting two hours, I met Dr. Sekula. Super nice Doctor, took his time (an hour with me), knew his stuff but I walked away uneasy, scared and confused. Not really sure why but I just wasn't comfortable with him. Nothing personal at all since he was super nice and down to earth.

Headed to Cleveland after the Doctor appointment. My head hurt, couldn't sleep, was scared and hope wasn't in my vocabulary. Shook off what I could and Wednesday was a day off for us. We went to the Cleveland Zoo, the Rock and Roll Hall of Fame, took a nap (well, I did!) then went to the Hard Rock Cafe. Fun day but I was exhausted! We had a small amount of time so we went to the Art Museum and then to the Cleveland Clinic.

This place is like a city it's so big! Nice hospital to say the least. When we got there, we were warned how long the wait was (nice touch to at least warn me!) and so we went down and explored the hospital a tad. Cute shops, interesting food and a Starbucks had me thinking that Dave would love this place! A PA took me back to the room and went over symptoms then I waited just a few for Dr. Di. Nice guy for sure. Not as talkative as Dr. Sekula but he explained things in a way I understood. He wasn't afraid to use big words and drew me a diagram of his plan for surgery. Both Doctors basically said I should have surgery, they just approach it different.

I felt comfortable with him. I cannot explain it since there wasn't anything wrong with Dr. Sekula, just one of those things. Not every Doctor is best for every patient or maybe God was steering me toward Dr. Di - I am not sure. Some questions won't be answered until surgery as Dr. Di has variables depending on what he sees once he gets in there. The basic plan is to remove part of the bone in the back of my head, stretch the Dura, shrink the bottom part of my cerebellum and do a laminectomy of C1. In theory this will make enough room for my brain. He is scheduling into the second week of March, they will call me next week with a date.

Dr. Di does the surgery endoscopic, meaning my incision will be less than half the standard size for this surgery. Hospital stay will be about 2 nights instead of the standard 5 and recovery from the actual surgery will be much shorter. He can't say how long until the symptoms leave, if they even will but he is hopeful that I am a very good candidate for a successful outcome. I left with this giant weight lifted off my shoulders.

I have hope once again. I can see a future. I am not as scared. I Thank God for my church family and friends who prayed for me. A group meets every morning for prayer and they had me on their list for this week. They asked for peace and I have this. I have peace and hope. Those are needed when you are about to have brain and neck surgery :-)

So I am home now and soooo glad to be here. I missed my life! My wonderful husband, my loud kids, my crazy dogs - the whole works. Life is good, if only for today!

Healing Hurts

No, I haven't had surgery yet. What may be harder than recovering from brain surgery is the healing of the heart. A wicked, wounded place - needing more healing than my condition. Spent some major time in prayer and Worship this morning. The power of Jesus to heal when we stop and let Him, in so intense. It's hard. It's needed but oh so hard.

Some people can Christianity is a crutch. I have to disagree. This would be so much easier to deal with if I could just get mad at God or didn't know him and turn miserable. Misery is easier than growth and hope. Instead, God has a different plan. He uses this to draw me close to Him so He can heal what really matters - my heart. My body will not last forever, my heart and soul will live on in heaven with Him forever. So, the healing needs to happen.

Submission, surrender and trust are things that do NOT come natural to me. I am a stubborn, strong willed brute of a woman. I like control. I trust my own stupid ways since I KNOW them. When I have to depend on someone, it makes me nervous. One of the first things God worked on when I got saved was this and the journey continues. He first showed me through my husband how to submit and to trust. God designed men to be the head of the house for a reason. He has wired us differently. I have accepted that (most days). I love it now. I trust Dave with my life. He has shown me God's version of submission. I submit to Dave and He always acts in MY best interests, not his. God knew I needed to see with my eyes and used Dave to teach me to trust. NOT an easy lesson for me, one I am still learning.

Again I find myself wanting to control as I get ready to fly to meet with the Neurosurgeons. All the research in the world is irrelevant if I don't involve God. He is in the drivers seat and He reminded me of that this morning. It's ALL about Him - not me! So this morning, I surrender my life yet again to my Jesus. I am in His hands and there is no better place to be when scared or making decisions.

Sometimes, I forget.....

Planning like a fool here lately. As per my usual, I have changed plans 100 times. I have it all set now - finally! I am flying out Monday morning, with a 7 hour lay over in CHICAGO!! This is what makes me forget. I *LOVE* to travel but have been hardly anywhere. 5 days, 4 nights, 3 states, an amazing friend and lots of cool stuff to see and do. Makes me busy, I get excited and I forget, if only for a few, this isn't actually a vacation - I am "interviewing" Docs to see which one gets the privilege of doing my brain surgery :-(

Am I ready? Nope. Not even close. Aside from packing - emotionally, I am not sure I am ready to face this just yet. Not much choice as the first appointment is Tuesday afternoon. This is silly but I am freaked out about my hair. They shave a very large portion of the back of your head, typical incision is 7-8 inches long. I have short, curly, layered hair. No hiding this for me. What do I do? Shave it all or look like a fool with a reverse mullet? I don't even like my hair, never have - why do I care?

I have two days to deal with getting ready to go. I will make 100 lists, check them 100 times and try not to freak at not seeing the hot hubbie, kiddos and my Danes for 5 days :-(

Tired of decisions

Some days - I just want to run away. Once again I admit to being tired of the emotions, the roller coaster that has become my life. Looking really hard at which Docs I need to see today. Funds just arn't there to see as many Docs as I want. Biggest decisions for today are - look into having the "regular" slice your head open about 8 inches or the endoscopic version, 2-3 inches. Now ladies - we can say size doesn't matter but when it comes to having your head cut open it does.

Part of me wants so bad to go see the Doc who does the small version but as far as stats go - this surgery has even LESS data than the traditional surgery. So - how can I possibly make an informed decision? If I go by what the others Docs say, most will say - not enough long term studies to prove it is effective. Ineffective means a repeat surgery down the road. NOT GONNA HAPPEN! I cannot go through this again. It is infecting every area of my life, except for spiritually which is amazing but still. I snap at the kids, at Dave, I don't listen when my kids tell me stories about school because I am thinking about this, I don't get much done around the house because I am trying to find peace with this stupid surgery. Not gonna do this to my family again. So I guess maybe my decision has been made?

Yet I find myself lusting over a 3 inch incision. Less risk of a spinal fluid leak post-op, less time in hospital, maybe being able to not shave my entire head, less pain - sounds like a vacation on a desert island surrounded by Cabana boys fanning me compared to the regular surgery. Sometimes, doing what is best is harder than doing what is easier.

I have the appointment with Dr. Sekula in Pittsburgh scheduled for next Tuesday, the 12th. Yesterday I tried planning the trip. What a nightmare. Plane is out of the question, too expensive, me driving isn't an option so train or bus it is. Somehow the thought of spending 10 plus hours on a bus or train for a trip that would take 6 by car has me second guessing all my options. Do I just bite the bullet, rent an SUV and pray for no snow, taking many rest stops on the way? Maybe. I don't like any of my options. I feel like a spoiled brat.

So what does Chiari feel like anyways?

Guess listing symptoms might interest some people. Chiari isn't an easy thing to describe and since the spinal cord, CSF and all that are involved - everyone's symptoms are different. Mayo lists these:
Headaches, often severe, are the classic symptom of Chiari malformation. They're typically precipitated with sudden coughing, sneezing or straining. People with Chiari malformation type I also can experience:

• Neck pain (running down the shoulders at times)
• Unsteady gait (problems with balance)
• Poor hand coordination (fine motor skills)
• Numbness and tingling of the hands and feet
• Dizziness
• Difficulty swallowing (sometimes accompanied by gagging, choking and vomiting)
• Vision problems (blurred or double vision)
• Slurred speech

Less often, people with Chiari malformation may experience:

• Ringing or buzzing in the ears (tinnitus)
• Poor bladder control
• Chest pain, in a band-like pattern around the chest
• Curvature of the spine (scoliosis) related to spinal cord impairment
• Abnormal breathing — specifically, sleep apnea characterized by periods of breathing cessation during sleep

As for me - mine are odd for the most part. Maybe one of the most frustrating things is the unpredictability of this disease. Days are different, some days I feel as normal as can be and others - well, let's say I dream of dancing on the streets of gold it's so bad. My symptom story begins at least 6 years ago, with headaches. A former gym rat, recovering from the birth of my last baby - I decided to get my out of shape butt back in the gym. Didn't last long, every time I lifted weights - I would get these horrible headaches. Now I never lifted like a girl. No pink dumbells or wimpy machines for me. I lifted with the big boys - squats, deadlifts and the like. Heavy weights, low reps was my thing. So - my first of many "straining headaches". So - I quit the gym, we moved and life got in the way. The headaches went away and I felt human for awhile. Then the insomnia began.

I was at the end of my first marriage and dismissed the insomnia as part of the stress of becoming a single Mom of six children. Medicated it with drugs and alcohol, to a functioning level as always - nobody even knew. Control was my specialty. That period followed itself by the opposite. Sleep was all I did. 15 hours a day wasn't enough. I didn't eat because I wasn't awake long enough to eat and even if I was, I didn't have the energy to get food. Somehow I gained 50 pounds in just a few months, despite not eating. Many other odd symptoms in this period but I was diagnosis with Hashimoto's - an autoimmune hypothyroid condition.

Fast forward a few years, thyroid under control by meds and I am attempting to be human again. New husband, new house, new life, new me. For once in my life I was emotionally and spiritually healthy - or at least on my way. Low back pain had become a daily thing. MRI showed moderate stenosis and a mild disc bulge at L5-S1 - not abnormal for a woman my age who led the life I had. Always being the rough and rumble kind, not out of the norm to see disc changes in your late 30's. Former marathon runner, gym rat turned couch potato :-( I was a CENA for years, lifting the elderly daily. I loved my job but assumed I had caused my back problems. Tried everything - PT, meds, chiropractor - nothing worked. I resigned myself to that life and quit working.

Odd symptoms really starting creeping in here. As if a switch was flipped - one day EVERYTHING hurt. Every joint in my body hurt. No swelling, but I would cry in my sleep it was so bad. A million Doc's later, I was tested for everything under the sun and was no closer to a diagnosis. The pain subsided to mostly lower back and my hip so I assumed it was all due to my lower back and changed my lifestyle.

The headaches returned one Saturday. I was a Youth Leader for my church and *LOVED* it. Being a big kid, my gift to them was love and goofy games. I would laugh so hard and one day - i felt like my head would explode it hurt so bad. I was blinded by pain. Two days later, the headache was finally gone and returned every time I laughed really hard. Not trusting Dr.'s, knowing they wouldn't find anything wrong - I researched it and diagnosed myself with exertion headaches and moved on. After a few months, it just stopped as quick as it started.

I had some more odd symptoms creeping in at this point. My finger tips and feet would go numb and my hand grip strength was an issue. Again, hating Docs, I decided it was Carpel Tunnel and bought a brace and once again altered my lifestyle. No mixing, no bending, no lifting - I was almost useless :-( Maybe a slight exaggeration but that's how it felt. My body and spirit were at war. I am an active, energetic, hyper person trapped in an old person's body at this point.

I am always thirsty which means I am always in the bathroom. Annoying to say the least. Again, assuming this is just how it is. I did have my sugar tested a million times and no diabetes so once again - just another life altering symptom. Episodes of dizziness, loosing my words and my memory became another new norm. Typing this out, I realize how many things I blamed things on. Former drug addict explains the memory loss and word issues in my head. Since Docs can't figure me out and I have given up on that profession, I found excuses for every odd symptom I had.

The headaches returned this fall. I went over two weeks with a headache and severe dizziness. The flu or some odd virus I assume. That went away, only to return a few weeks later with a new symptom - drop attacks or fainting or whatever you want to call it. I would have the headache, get dizzy then would feel like the world was spinning and knew I was going down. Happened a few times. This is just my life I assume. Pain in my shoulders and mid-back, loosing feeling in my limbs, loosing the ability to move my entire leg. Must be all related to my back or drug induced brain issues right? I walk into walls and trip over nothing but this is just me - I'm a klutz and it's cute right? Randomly loosing the ability to read is because I have bad eyesight right? Either that or the Docs are right and there is nothing wrong with me and I am just a nut job.

One evening, I somehow must have fallen and blacked out. I was walking the dog, came inside and was different, confused and grumpy. Took a tiny nap and woke up and had lost 3 years of my life. Hubby took me to the ER and we assumed it was yet another concussion. First one was in February when my hip "gave out" while walking the dog. This is where I got the diagnosis of Chiari. Hence my journey had truly begun.

I am very curious how many of my symptoms are Chiari induced. I have read stories and it would appear almost all of my odd crap is Chiari. Being called a nut job is also common in Chiari people. Docs can't figure you out since they arn't trained to diagnose Chiari so they assume you are making it all up. Sadly, once again the research isn't there to support a firm case of what really are Chiari symptoms. I guess we will find out after surgery.