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.....