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.....