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.....