Confused...

I pecked out a long post here to catch up with all that has occurred over the past five months, and I hit "post".... but it simply disappeared. Gone irretrieveably. It had taken so much gumption just to get it written out...and now it was gone. That was two weeks ago.

I'll try something short here first, to see if it will post, before I write something long only to lose it again.

My last post, I was on my way to the doctor at Swedish Hospital near Seattle. With hopes lifting me on my way and dreams of a nice neurosurgeon who would listen, who did not have arrogance and a big ego, and who would thoughtfully consider what could be done to help me.

Fat chance. He was almost as bad as the worst yet, this neurosurgeon the last in the litany of 8 neurosurgeons. He came in the door with his mind made up before even seeing me physically. He did not have more than a few minutes to go over the imaging I'd brought him when I arrived early for the appointment.

He announced that he simply never reads the reports of others. He makes his own decisions. Surgery is not an option for me. My symptoms are due to my Post Traumatic Stress Disorder.

Which only made me cry the harder and I could not stop even though my mind was telling me to stop. I hate crying! I don't want to do it, I am a darn strong woman and a child of the Living God, I shouldn't be crying but when this doctor opened his mouth to speak his first words, I could see that he was no different than most of the others I'd seen before.

He didn't care a lick about me. He pointed to the short version of my files that my PCP had sent him, and announced that I am a "trainwreck," and that NO doctor would ever work on me because they also would see I am a trainwreck waiting to happen.

I told him that the team of neurosurgeons at OHSU in Portland a year and a half ago had studied my imaging and had offered surgery to me. He told me to run as fast as I can away from them.

He was a jerk.

But, in the midst of being just who he is, I could see a positive. I now appreciate the docs at OHSU much more! I'm not in love with the neurosurgeon I saw there (3 times). That was why I was seeking a different surgeon. The Portland doc would not talk to me for more than 15 minutes. I did not see any effort on his part to create a connection with me which might reveal to him ways I need help. He simply did not want to offer me surgery, either, and said so adamantly. But, he did one thing that was either mechanical or heartfelt: he said he would have the whole neurosurgical team look at my imaging and would tell me on my next appointment what they all decided.

And when I went back to find out, this same doc burst into the exam room telling me: "You need surgery and you need it now! No doctor has done anything for you, you are very unstable (instability at the craniocervical junction) and you need rods, screws, plates and wires to shore you up!"

As I said, I decided to wait back then because this doctor, besides only allowing me to stay with him for 15 minutes, and, when I asked him to tell me more about the surgery, he told me he'd tell me more once I decided to go for it, despite those things, he also told me, "Now, you must be aware that you could end up worse after this surgery! You could become paralyzed. You could become a paraplegic. You could die! I do mistakes sometimes, you know!"

THOSE were the reasons I wanted to look elsewhere.

Now, I appreciate that team of docs at OHSU. And I think every day about surgery. This instability at the C1/skull junction is worsening. The CT of the C1 showed, according to the radiologist's report, that the C1 is moving, slipping to one side, allowing the bony finger of C2 to slip the other way within my spinal canal and thus crunch the brainstem...the pain is not good...and right now, I sit here just feeling neurologically OFF, I'm sweating bullets, swallowing problems have been worse than ever, vision is worsening, balance is worse.

I think of surgery every single day. Wondering if I can work up the nerve to go for it. Wanting a sign from the Lord but not getting one that I can read. I want to call up OHSU and schedule an appointment with a kinder, gentler doctor. I want to ask a nurse there just who she would recommend, perhaps to her mother, what doc would she want to treat her mom? Would they do that? Would they allow me to see another neurosurgeon? I don't know.

I need new glasses for sure, and I need to have my teeth fixed. I have a front incisor that looked okay, but it was very ouchy. I went to the small town dentist here locally and he was sick and a woman was taking his place, she drilled into the back of that tooth and accidentally drilled right through to the front! So, she pasted some junk in there that looks terrible. Yeah, I'm tired to the bone. I'm happy with life...but it almost feels like things are piling up too high.

The Lord will lead and guide me, I know. I keep waiting for His sign.

Thank you for reading!

IS it May 21 already?

Are you ready for the rapture tonight? If you are a believing Christian, then, yes, you are!

But, is it going to happen? I'm "not feelin' it." But I don't really know because the book of Matthew tells us no one knows. And it also tells us that Jesus will return as a "thief in the night." Surely, everyone, believer and non-believer alike, knows about May 21 and the prediction that all Christians will be taken up into the sky to live forever with Jesus on that date. It's on TV and radio, the nightly news and billboards. I never saw a thief in the night come with so much prior publicity. But...shrug...maybe it will happen!

For me, I'll be so glad for that day. The only thing that will mar it is that so many of my loved ones do not have that personal relationship with Jesus, and if the Lord came back tonight, they would indeed be "left behind." But, that's their choice.

I did not intend to post on the rapture or "taking up" here just now, but that is what poured out of my heart. Now that I've obeyed God, I will post a couple of other things.

Two sad/happy losses to our Chiari and Christian family. The lovely, spritely Michelle McCollum has passed away. She died on May 18, I believe. Her son was born with Chiari, and her strong advocacy for his health issues led to many of us getting to know Michelle. What a gem of a person she is! Sadly, she was diagnosed with cancer several years ago and has been fighting such a battle ever since.

In and out of hospitals (the "in" days numbering much more than the "out" days, sad to say); at home being hooked to IV poles and other medication suspensing equipment.
I marveled as I watched her, through her emails and posts on the Christian support group, Healing Friends, supporting and encouraging on her son as he excelled in school athletics. She would drive him and other team members all over Texas, while, unseen, her body was challenging her at every turn.

Last year, her left leg was amputated. Infection raged through her body. She fought it all with grace and dignity and sharing with us her understandable human emotions.

We were shocked to hear she had passed to the other side! It seemed like she was doing somewhat better.

Michelle left behind her devoted husband, Brent, and 2 teenaged children, a son and a daughter. We miss you, sweetheart!

Last night, while searching for Michelle's Facebook page, my eye caught a post from Matt Harms. The topic of his post left no doubt: he was readying for his wife's services! What??? What happened to beautiful Becky??? I stayed up late as I searched FB and the web and read her obituary, and read all comments, pages and pages of them, on her FB page.

Becky Harms was 41. She died "at her home," the obit reads. Other than that, I do not know any more. I miss her so much.

Becky had her craniocervical fusion done at TCI at the same time I had my Tethered Cord surgery. She and Matt, two separate occasions, picked me up at JFK airport in NY and delivered me to their (and my) motel in Floral Park. We went out to eat one time together. Since Becky and I were both on the neuro floor at North Shore Hospital at the same time, I often toddled down the hall to her room to visit with her, and her husband Matt would come to my room and sit down and visit, often. Later, I learned from Becky that she had sent him down to check up on me. I was alone at the hospital for 3 days and those visits with Matt and Becky made me feel less alone.

A few times, we sat in each others' motel rooms and talked and talked. I remember her showing me her children's pics on her laptop (and I marveled at someone being able to show pics on a lap top screen far away from their home PC! Boy, how our technology has rushed along. That was back in 2008).

She loved horses and she and Matt had a farm full of them. Sadly, Chiari took away the horses and I could visit and relate with Becky about that. She had a movie star smile! A lovely, loud laugh. I recall her telling me that she used to be a bullrider before her life as a mom. she remains the only lady-bullrider I know.

Becky Harms, I miss you, but a huge part of me is envious of you right now. You no longer have pain. And you are most of all in the Arms of Jesus!! And when you are not holding onto our Lord, you are riding again, perhaps even some bulls along with the horses! I loved you and still do. I look forward to seeing you one day. Please have a good horse saddled up and waiting for me, okay?

Last year, I intended to enter...

...the following here on my blog, thoughts that came to me on the 6th anniversary of my injury date (April 9, 2004).

I say "my injury," not "my accident." I've never been able to call anything an accident in my life.

I think about it now and realize with wonder, as I look back down the trail I've been on, I never blamed God. I never blamed the horse. I never blamed myself or anyone else.

And today, I realize this is because I lived so many years on the edge, when I could have or should have been hurt or killed in my profession of horse-training and cowboying, that what happened seemed to be what naturally SHOULD HAVE happened.

I never had regrets and I still don't.

If I could go back and trade in the injury with a payment of all those horseback years; give those 40 years of cowboy life in exchange for "no injury," no broken neck...I honestly wouldn't do it.

Those days and stories remembered are treasures to me, gems that I sometimes get out of the safe-deposit box of my memory and I hold them up to various rays of sunlight and allow the facets to fracture into beams that play over my upturned, thankful face...

...and I thank God for them all.

Every last one.

another sweet poem...

I liked that "I needed the Quiet" poem so much, I did a websearch on the author. And I found this wonderful poem about faith:


Doubt cries, "It is impossible! You can't, you can't go on!"

Faith softly whispers, "Yes, you can. Just trust in God. Be Calm."

Doubt cries, "Look down! Your path is steep and rough with stones and briar!"

Faith gently says, "I'll take your hand. It's beautiful up higher."

Doubt has not one thing to give but "going back" alone;

Faith has God, eternal life, and heirship to a throne!

And so, on unseen eagle's wings, these feet of clay are borne.

While faith within me sings and sings, We rise above the storm!


by Alice Hansche Mortenson

"I Needed the Quiet"

I needed the quiet so He drew me aside.
Into the shadows where we could confide.
Away from the bustle where all the day long
I hurried and worried when active and strong.

I needed the quiet tho at first I rebelled
But gently, so gently, my cross He upheld
And whispered so sweetly of spiritual things
Tho weakened in body, my spirit took wings
To heights never dreamed of when active all day,
He loved me so greatly, He drew me away.

I needed the quiet, no prison my bed,
But a beautiful valley of blessings instead...
A place to grow richer in Jesus to hide.
I needed the quiet so He drew me aside.

by Alice Hansche Mortenson @1978

What this blog is about...

Just thought I'd mention here something that some readers may not know and that is that this blog is a "medical blog."

It's just a place for me to post and record my feelings about happenings that relate to my April, 2004 injury (Jefferson Fracture, 4 plc, and "atlanto-occipital dislocation"-- or in laymen's terms, "internal decapitation"). I started this blog 4years ago, when I thought I was going to have surgery to stabilize my head/neck, and I thought I would be in a halo for a few months. I thought, at the time, that it might be of interest to hear the day-to-day struggles of living in a halo. However, that never happened, which is, even in the abscence of the surgery and halo placement, still a part of the story.

The readers here have followed my journey of raised hopes and dashed surgery plans. Once again, it's all still a part of the picture. And something that many, many patients (those with congenital conditions such as Chiari Malformation or cranial-cervical instability, and/or those with traumatic injuries such as I endured) deal with year after year after year. It's now been 7 years since that jumping horse stopped suddenly at the base of a 3'6" jump and launched me over his neck, over the jump poles, where I landed head first and thus suffered the traumatic injuries listed above. April 9 will mark that 7 year anniversary.

Rejection by specialists; difficulties dealing with health insurance and doctors' secretaries ; egotistical neurosurgeons and prima dona specialists; cancelled surgeries; ongoing pain and spinal cord symptoms; presenting our situations to family and then coping with their responses, and oh, so much more, all of these things are shared by so many, including myself.

For some people, they break a major bone, or receive a tragic diagnosis and their insurance stands by their promise of being responsible for treatment and follow up care, they undergo surgeries and treatment and then they recover. They have not had to undergo that difficult search for a specialist who understands the rare condition or injury that was incurred. They've not had to convince family and fellow workers that there IS something wrong, something major.

Thankfully, the sort of journey I've just described is a common occurrence and for that, I am so thankful.

But there are different experiences from that and I think many of my readers here relate to the disappointments, betrayals, grief, bitter rejection, shameful treatment, castigation from specialists and, again, dealing with egos and personalities and trying to "win them over" to your team, praying they will go to bat for you. Far too often, no one goes to bat for these people. They wind up being the driving force for any iota of care or treatment they receive.

After crawling under the porch and licking their wounds, these patients keep picking themselves up, dusting themselves off and moving ahead with the war, even after year upon year of intermittent defeats and lost battles. They are heroes of a sort, unknown soldiers fighting an unseen battle with little to no assistance from anyone else (family, fellow workers, case managers and claims adjusters, surgeons and nurses et al).

As you read my ongoing story, perhaps you can think of others in your acquaintance who are riding down the same trail, and this knowledge will help you to help THEM, and for that, I would be so thankful.

quick update

I am sorry I have not been able to keep up very well with posting! Life is so full with the every day things that my few hours to get them done seems lacking. Just the laundry and the kitchen and making the bed and keeping up with the few phone calls I make and the emails (I'm way behind on that one!), it all keeps my busy and that's a good thing!

For years, I have evolved into feeling like "living" is my job. Just waking up and doing the routine things I do every day, that is my job each day. And I love it. Do you feel that way too, those of you who are disabled?

Thank you to those who leave comments! I really do love getting those comments.

A few months ago, I gave up being a moderator at Chiari Connection International. I loved doing it and loved the people I was involved with. But I noticed that I was spending about 3 hours a day with CCI and other message board stuff, and then having a hard time finding the energy and time to call my Mom. She is 86 now, and lives 3000 miles away, so I need to focus on those family things for awhile.

We just got back from a quick trip to California to see our son. What a blessing we experienced there! We are now thinking ahead to the Fall and perhaps being able to use Sky Miles and taking our son to Alaska with us this year. There is so much "aviation" up there and that is what his career is, where his knowledge and experience lie, so we know he'd love it up there as much as we do.

While in California, we spent some time with the Elephant Seals that are almost always resting on the beaches near San Simeon. Since we used to live not far from there, we have spent a lot of time with these enamoring animals. They seem to radiate a warm peace that affects everyone who goes to see them. I mentioned to my son that the fresh, brisk breeze and watching the seals seems to bring a sense of euphoria to my brain, and he agreed, it does the same for him!

About my health, it remains the same. I last posted that Kadlec Neuroscience Center in Richland, WA turned me down due to my out-of-state workers' compensation insurance. So, I next asked for authorization to be seen by a neurosurgeon in Seattle, at Swedish Hospital. Dr. O has done surgery on a few patients who had previously been Chiari Institute patients. And the feedback has been very favorable.
My insurance responded quickly with a "yes," and then Dr. O's office has requested a new cervical MRI before they set me up with a consult appointment. The MRI will be March 23. I am anxious to be seen by Dr. O and to hear his feedback.

I am wondering if any of my readers experience the same dilemma that I feel right now. The world seems to be in such chaos! Since I am a born-again Christian and believe the prophecy in His Word, I naturally wonder if all of this turmoil is a precursor to the end of the World...to Jesus' second coming. I know that each generation experiences such worldwide havoc. I sometimes think and wonder how it must have felt to be alive during the Second World War, and seeing war being fought valiantly on two fronts, the Pacific and European theater.

To see the atrocities of concentration camps; the bombing of Hiroshima and Nagasaki; the terror of brutal dictators, must have made many believers at that time wonder themselves if this was "it." The time that all prophecy points to in the Bible.

The Bible tells us that no man will ever know the date of His coming. Not even the angels know. But we will know the seasons, just as surely as we know that Fall has arrived when we see the leaves falling from the trees.

In the shadow of world events, I wonder: do I want to go through with an intense surgery that will demand a rugged recovery?

Perhaps the reader thinks this is simplistic or foolish, but remember, the Bible also tells us that the ways of God ARE foolishness to the world.

It's difficult and challenging, isn't it, to listen to our hearts and instincts and also our knowledge of God and our every day experiences and then make a BIG decision.
Sometimes, the way is not so clear. Please help me pray that the way WILL be made clear in the choice of having surgery or not (If it is offered. I have asked God to help me by having this new neurosurgeon refuse to see me IF it's not God's will that I have the surgery. After all, Kadlec refused me. The doctor at The Chiari Institute refused me. Perhaps I'm missing all the road signs!).

My husband and I are planning to plant a big vegetable garden this year. Maybe "big" is a relative term here, as I'm sure we will not be planting anything BIG, just something larger than we've done to this point on this property. I am guessing that we all are, in large and small ways, wanting to feather our nests, batten down the hatches and hold down the fort!

However, the most important thing we must do is to be sure of our relationship with our Creator. We can have the basement full of foods and lots of money stored under the mattress; we may can and freeze and dehydrate and "put by," but it all can be gone in the blink of an eye. We are told in God's Holy Word to "lay not up our treasures on earth where moth and rust doth corrupt and thieves break in to steal, but instead lay up your treasures in Heaven." (Matthew 6:19-20)

Now is the time to be sure of your salvation, which floats within your reach in the form of everlasting life and forgiveness with Jesus Christ. Just as you must "make hay while the sun shines," you must make this big decision BEFORE you die and face His judgment. Now is the expected day of salvation, His word tells us: "Behold, now is the accepted time; behold, now is the day of salvation" (2 Cor. 6:1-2).

We may wonder what is happening spiritually within the world. We may ask ourselves, is this the time, are these the signs of the end of the world? We may feel a bit confused about it all and wish for more clarity.

But the verse above, from 2nd Corinthians, leaves no room to waver on interpretation. NOW is the day of salvation! If you have not done so, won't you pray with me as you read this?

"Dear Lord Jesus, I come to You today with a broken heart. I know that something is missing in my life. I know that when I try to take over, I mess things up. I know I need help.

I know I have sinned, as all people have sinned. And I know those sins are a wall between You and me. I want a relationship with You. I want to know more about You! I want to feel confident about where I stand with You. I want to know where I will go when I die, when I pass from this brief life into the presence of Almighty God.

So, right now, I give You my life. I give You all of my heart and I ask you to come into my life and heart and to reside with me, as Master and Savior. Please, forgive me of my sins and make me whole and clean.

I don't know much about doctrine or even much what the Bible says, but I do believe with all of my heart that You died on the cross for MY sins. If I'd been the only person in the world, You still would have died on that cross for me alone. So that I could dwell with You for ever, in heaven and on earth.

Please, Jesus, come to me and be my Savior. Save me from the chaos of this world. When I hear the news reports of earthquakes, tsunamis, political turmoil, uprisings, bombings, terrorism, deaths of loved ones and divorces between friends, oh, please God, place in my heart and mind a confidence that those things are only temporary, but I stand "right and sure" before You and here on earth because I have prayed this prayer today.

In Jesus' Name, AMEN."