A strange thing, HOPE!

It's taken me a bit to get on here and get my blog up to date on what happened at the neurosurgeon's appointment....so here goes:

The minute I walked into the tall, tall building that houses the medical offices of OHSU (Oregon Health and Sciences University), I felt "right" somehow. It had to be a "God-thing" because I had a couple of tough experiences there a couple of years ago...but nope, everything was going well.

My neurosurgeon was on time, and when I and my husband went in, I was first interviewed by the kind physician's assistant who had interviewed me before, when I first visited that office in 2009. She visits with you, and then goes back to the surgeon and tells him all about what is wanted, expected, etc, so that he can be ready when he walks in. I had told her that I was ready to put it all into the surgeon's hands: if he says yes to a surgery, I will make a decision on the spot to have it done. If he says no, I'll walk out and not seek surgery again.

Therefore, it was not a surprise when he walked into the exam room and got right to the point: yes, you still need surgery and so, first, we'll get new imaging, and once that is done, I will go back to see him and we'll discuss if surgery is still the right thing to do. He wants to just fuse the C1 and C2. I asked him if he'd fuse to the occiput (skull base) and he answered that he prefers not to unless it's very necessary. He said that when he gets into the surgery, at a certain point, he can check it all to see if there is movement where there shouldn't be, and if so, then he'd fuse to the skull base.

My feelings about it are that I prefer he does go ahead and fuse the skull base, but I trust his judgment. I also feel that the fusion of C1 to C2 is certainly warranted since the last MRI where the radiologist reported movement of the C1 to the left, which is not good.

He was soooo nice, and said a few times that I will do really well with this surgery, that he will be helping me a lot, that alot of my symptoms will resolve. I am so happy!

So, right now, I'm waiting for my workers comp insurance to give the go-ahead to have the surgery, and then I can move ahead with the new xray; new MRI (regular) and then the SPEC scan which is an MRI done after a radioactive substance is injected into my veins. He said he was really liking his experiences with the SPEC. I had it last time and no problems.

I'm very excited about this. First of all, as soon as he spoke his words, I got misty-eyed, and tears came from my eyes. I realized as I went home that there was something HUGELY different in my life. Something felt so very changed to how I felt from the time I broke my neck, 7.5 years ago, until the surgeon spoke those words a couple of weeks ago. On the way home, it hit me what it was. HOPE. I have hope, something I have not had for many years. This surgery, believe it or not, will be the FIRST surgery ever that I will have had on the C1/skull base area, since I shattered it all April 9, 2004! The surgeon said it was high time someone helped me out. Lord, please bless this wonderful man!

All of your prayers were felt, believe me. The surgeon was like a new man, completely different from how he was 2 yrs ago. There was a sense of JOY in the exam room, when the center of attention, ME, was infused with happiness and joy that I would finally get stability at the craniocervical junction! The PA was laughing and happy; my husband was cracking jokes, per usual; the surgeon was joyful and tears were streaming down the cheeks of my face as that single emotion, HOPE, which had been missing for so many years, took up residence in my brain.

Thank you for everything and I will keep you posted.

The Bottom Line

I finally found it! I've been praying and asking the Lord to reveal to
me what I can say to the neurosurgeon.

You see, I know them well enough to know that they want things concise.
They want the bottom line and they don't want to hear all about your various symptoms.

But, I just didn't have it, that concise message that adds it all up. Because I know he will ask me, "Why do you want surgery now?"

I suppose this might sound foolish to many. Why worry about something like this? Why let it eat away at you and keep you awake at night?

You see, when you have a brain injury, you worry that things will be asked of you, IMPORTANT things, that will need an answer. I do, I worry about it. Especially when it's concerning something really important to me!

I feel like I can relax when I have the right words down on paper. Because I have had the experience of not explaining myself well, and the neurosurgeon was in a hurry and he didn't want to wait for me to collect my thoughts!
His time is worth money and he exudes the air that tells me he has much more important stuff to do than wait for me to explain myself.

Well, whether the reader understands this or not, it is what I often wrestle with, but now, on a piece of paper in my kitchen, scribbled out in pencil, is "the Bottom Line!" I am 3 days away from seeing the neurosurgeon, and thank You, Jesus, You've given me the words I feel will work when I'm asked why I feel surgery will be good for me.

This is what I wrote:
The Bottom Line

I cannot keep myself from living Life.
I cannot keep myself from doing things, even small things, that I know will later on cause me a lot of pain and suffering.
I also cannot stay out of a car or pickup. Life really demands that I go shopping or to doctor appointments and other
things that require a ride in a car. I gave up driving long ago.

I honestly think a stabilization will help my problems with riding in a vehicle. The wobbling about, the motion of travel, will have less effect on me if I have a stabilization done at the cranio-cervical junction. I might even be able to drive again!

And I'll be safer in the vehicle with that surgery done, those rods and screws and plates and wires in place. In the event of a motor vehicle accident, I will have more to hold my head onto my spine!

AND, I believe that surgery will cause me to have less range of motion, which is just what I want. I believe that if my neck is held rock-solid, then I will not be apt to do those things that I do now, the things that cause neurological flareups. I will be more aware of not wanting to lift something heavy or turn in such a way that will cause anything to twist, turn or pop out of position.

These things are the bottom line. I truly believe, given my own awareness of my own situation, that a top-notch stabilization will finally put me into the right place, and keep me there.

finis

A couple nights ago...

I am feeling so sick. It's the nausea I get from the pressure on my upper spinal cord, ie my brainstem. It's a "dry" nausea, I can have dry heaves and nothing comes of it. But the nausea comes every day and sometimes sticks around for hours.

Last night, I did a very, very bad thing!! I sanded down my dogs' toenails. I hold them on my lap and do the job with an electric moto-tool.

You see, I'm not wired to find reasons not to do something. I'm hard-wired to find a way to do it even if I'm sick. That was the way I was all of my life. Now, you can see only a faint shadow of the person I used to be. My weakness and the pain that wracks my body just puts a huge block wall in my way. It's been a long, long time since I've been able to really work hard, but each day, as I find a way to get through it, I look for that special, rare moment when there's a millimeter of strength to achieve something. That's all I hope for, each day, is some oomph that will allow me to do something that I really want to see done.

I can't afford a house cleaner or a yard worker and really can't afford to pay a vet to do my dogs' nails. But...I'm their owner and it is my responsibility to keep them healthy. So, last night, I felt pretty good, so I did their nails. I knew, knew well, that doing something that keeps my chin on my chest will produce some nasty symptoms soon to follow. I would think I'd weigh the known payback and simply not do it! But, I'm just hard-wired to do something if there's any chance in the world that I can do it. Which is not necessarily a quality...

So, tonight, after a day that saw me spending 3.5 hours in bed, due to painful weakness, I have been overwhelmed with the nausea. Pain at the back of the head...but also this wicked nausea. Ginger drops help but not tonight. I've taken a handful of tums, I drank 2 small glasses of milk, I ate a half a piece of bread with peanut butter, which often helps. But not tonight. I laid down in the dark...just took another oxycodone for the head pain...

and through all of this it seems silly that I still wrestle with the question that haunts me day and night: if the neurosurgeon offers me a surgery like he did last time, should I take it? I guess it wouldn't be a question so much if this neurosurgeon had not told me before, "You could die from this surgery."

She said the word, "safer!"

Another step on the slow, long road...

Yesterday, I received in the mail the authorization to visit my neurosurgeon in Portland, Oregon, at OHSU. The next step is to get an appointment there, and "cowboy up" and go see him. I suspect he will first order new imaging, since the last imaging I had there is now over 1.5 years old. After those are done, then I expect to go see the good doctor. At least that is the way I remember it went before, over a few months in early 2010.

I've tried to explain for the reader my feelings about surgery. How I realize now that I have been afraid of surgery, and without knowing that, I've avoided it. The other thing that happens is my mind wavers hot and cold about surgery. I can't seem to keep it on one track. One moment, I am sure 100% of the reasons I need surgery and I want to go in right that moment.

However, another day, I think about not taking any risks and about going with the evil I know, ie no surgery.

I have come to also realize that a person can have constant central pain and pretty much get used to it. Unless I'm late taking the pain meds...or the pain is worse than even it is normally. But...my observance is that a person can become accustomed to Pain.

So, today, I went to the pharmacy to pick up my meds. Usually, my pain meds run out at different times in the month and it seems like I'm going once a week to pick up a refill. But, this month, they all fell on the same time of needing refilling, so there I was, picking up six bottles of pills. The young man at the pharmacy joked with me, saying, "I have to give you the BIG bag for all your meds!"

As I checked out in the front with something else I'd bought, the girl noticed my neck brace and asked, "Oh, dear, you hurt your neck! What happened?"

I am SO used to hearing this from strangers. Every time I go to town, in fact. So, to her, I answered, "Oh, I just broke it a long time ago. I've been thinking of going for surgery though."

And this girl said, "You mean with screws and wire?"
and that was an unusual question she asked, not one I'm used to hearing, so I looked at her more closely, smiled and said, "Yes!"
She said, "I think you'd be a lot safer."

Why would she say that? She knew no details of my situation. Why would she say something so knowledgeable and personal?

I believe that there are angels around us, and God uses them to give messages to us.
In the Bible, there are several examples of strange ways God gave messages to His people. A prophet once picked up the jawbone of an ass and it spoke and delivered the prophecy to the people. The Bible also tells us, "Jesus Christ, the same yesterday, today and forever." God is the same God as He was back then.

I smiled at this young lady and sort of said, "Wow." Then I told her how much that meant to me. She said, "I don't know why, it's just what came to my mind."

Safer...that word means a lot to me because I heard my son say this to me once, and I never could forget it.

It was about four years ago, and I was ready to go for the fusion surgery, the very one I am still seeking, and I was talking on the phone to my son. He said that he felt I should get the fusion because it would make me safer were I to experience a car accident. It made a lot of common sense to me.

As the reader knows, I never did get that fusion due to some political stuff going on at the hospital. I've left all of that behind now. But it does seem like warnings about car accidents have been sent to me upon several occasions.

Dr. Bolognese in NY told me once that I would die if I were in an MVA (motor vehicle accident) and had not had the fusion.

My son told me he felt I'd be safer in the case of a MVA.

The neurosurgeon in Portland wrote in his report to my primary care doctor that there is a "risk of catastrophic failure of the C1 in the event of a car accident."

Hmmm. I wear the neck brace almost always while in a vehicle. But it is not something I worry about.

I've again been in the throes of inner debate about a surgery and this sweet checker at Rite Aid told me out of the blue that I'd be safer if I got the fusion surgery.

Wow...

it might be coincidence. But I've been asking God to tell me more directly if I am supposed to get the surgery. And then this woman said such a simple, yet strange, response to my mentioning surgery.

It feels good to me. I'm going to chew on it for awhile, but right now, those words have made me feel more confident about getting the appointment in Portland.

I'll keep you posted.

Catchin' up!

Okay, twice I typed out long posts and twice, when I hit the "submit" button, the messages were erased and lost and just plain GONE. It's frustrating!

I finally did, this morning, what I should have done all along: type, first, the post on a Word doc and then paste it onto the blog text box. So, here is what is going on in the neurological world of Virginia...

Ponderings about surgery, Sunday, Oct. 23, 2011

I have become "used to" the fact that my arms and hands are weak, and that goes for the rest of my symptoms, too. The symptoms are not mere nuisances, they point toward the progression of residual pains and signs that were left to me after my injury 7.5 years ago.

This morning, as I brushed my teeth, I thought about the times, at night, that I forego brushing, because I feel too weak to wield a toothbrush. And I noticed the painful weakness in my arms after brushing my teeth and a couple of quick swipes with a comb through my self-cut hair. My arms hurt and are so weak. This is definitely a progression.

Another one I can think of right now is the distinct feeling I get each day of my head, all 12 lbs of it, being too heavy for me to hold up any longer, and I seek out someplace, any place, to lie down and take away that stacked weight upon my spine and neck. Each day, I lie down for 2 hours or more, and the sensation of relieving that weight (of my head) produces often a euphoric reaction. An uncontrollable "AH" of sweet release.

[This reminds me of the "invasive cervical traction" I had done in NY several years ago. I've written about it all back when it was done, in November of 2007, but the procedure went thusly: They put you out for a few minutes while they put a halo on you, with the 4 screws going into your skull (through the skin); Then, they wake you up and sit you up in bed, and hook the counter balance weights onto the top of the halo, so they can pick you up by the halo. Then, they start stacking weight and asking if you can handle more, or if you reach a point of euphoria. And most people DO experience euphoria when that weight is removed. My husband's cousin in NY described this procedure as "draconian," and I would definitely agree!

I sat up in that position with the counter balance of 50 lbs holding me for an hour or so, while a CT machine went around me taking pictures and then several specialists pored over the resulting imaging on computer monitors nearby. When they had reached their conclusions, one of which was seeing for the first time that not only had I broken my C1 into 4 pieces, but I also had suffered Atlanto Occipital Dislocation (internal decapitation) at the same time, they removed the weights, and when the weight of my head once again was carried by the C1, it honestly felt like someone had placed a 50 lb. sack of feed on the top of my head! It was amazing how heavy my head felt, and if it happened to you, you would be surprised, too!]

Today, I definitely can feel the wobbliness of my upper C spine. When I'm well-rested and fresh, it is not as pronounced, but after being up and about for a few hours, each bump in the pickup, each snappy turn of the steering wheel (my husband drives, I do not drive anymore) keeps me well-aware of my cranio-cervical instability, and each bump or
turn adds up collectively until, all tolled, I have that dire NEED to lie down and get the weight off. I am always very aware of the weight of my head.

What do I hope to get from surgery:

The ability to drive again. Without a fixation, if I drive, my head is held in an instinctual,
strained, self-balancing fashion. In order to focus and see what needs to be seen, I hold my head still and steady, and this effort is a great one, which, again, collectively adds to the flareup that I will feel the next day, or that night, after driving.

So, I'd like the freedom to drive again. At almost 60, I can't help but think about my future and my "silver" years ahead. My husband is 11 years older than I am. We've been married 38 years this year, and it is my desire to be able to take care of him as we age, and not be a burden upon him. I would like my independence back, I have many years to live if the Lord "tarries."

Having lived with this instability for 7.5 years, I know things about it that no doctor can understand, and I know the tiny, the subtle, the secret ways I am affected by things. And I have a sense of what will help me. IF my neck and skull were affixed, I think that it will keep me from moving my head so much. I am told that I move my head around a lot when I am talking to someone (something I have, for years, tried to control). With that fixation, it seems common sensible to me that it would prevent me from that motion in the CC junction! It would control my movements in ways that my desire to control them or a neck brace can never do. And I think with a distinct "AH" how good I would feel if the movement at the CC junction were STOPPED! After 7.5 years? It seems like a heavenly thing to achieved a FIXATION that will keep things from moving around, especially my own movements as I do light housework or garden work, or even just chatting with a friend. The other day, I talked with my sister for 2.5 hours on the phone. Even though I was using a light-weight headset on the phone, just the action of holding my head relatively still and using the muscles and ligaments in the back of the skull that are put into action when I talk, altogether add up to a severe reaction to the seemingly benign action of talking! With a fusion, I believe I could talk again to family and friends!


I do not care about any loss of range of motion. I have restricted those movements of my head for years now. Right now, I love the thought of having bolts and screws and plates holding my head right where it needs to be! It's now, or never. I should have gone for it sooner, but in retrospect, I did TRY. I went to New York to see Dr. Bolognese in June of 2007 with every intention of getting a big fusion! I was pre-admitted to the hospital, had the hospital bracelet on my wrist, my friend from NY had already arrived in order to help me in the hospital post-op after my sister would have to leave to go back to work in NH.
I had the motor running and my foot on the gas! Until my doctor decided against me and basically dumped me as a patient!

And, naturally, that experience warded me off of neurosurgeons and surgery for four years now. It's understandable that I became afraid of surgery after that NY experience, but on the other hand, it's time now to let go of the fear and move forward into a chance for improvement.

I take gobs of pain pills. Nortriptyline, Oxycodone, Oxycontin, Cymbalta, Metanx, Lidoderm patches. And I use a lot of iced gel paks. I have a mobility scooter. I KNOW, without a doubt, that there is no natural healing for me. I am not going to see any improvement without mechanical interaction. No, instead, I will see progression, an increase in pain, weakness, and the many neurological symptoms I experience that are due to compression of my brainstem by the C2 odontoid bone.

IF my work comp insurance authorizes a consult with a neurosurgeon, my next journey will begin. A trip to Portland, OR for the consult. I imagine a myriad of CT scans and MRIs will need to be taken and studied. I put my trust in God and my head in the hands of Him and the neurosurgeon, if surgery is offered. I will try and keep the reader posted.

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."

well...

...the long and winding road....

As I'd written here before, I felt really good about going to Kadlec Neuroscience Center, only 2.5 hours from me. However, yesterday, I received a call letting me know they will not accept my out-of-state, workers' compensation insurance.

Sigh...

Used to be, I'd go crashing on the bed in the guest room and cry my eyes out, expressing and releasing my crushing disappointment yet again.

It's been almost 7 years now. Maybe I've learned. Maybe I'm jaded.

I was disappointed, but I shrugged it off, and fell back to Plan X, having exhausted over the years Plan A thru W.

I called Dr. Rod Oskouian's office in Seattle and asked if they would take my insurance. They replied that they would.

So, now my primary must re-contact my insurance case manager and ask for a new authorization, this time to Swedish Medical Center in Seattle. Then they must copy reports again and fax or mail them off to Dr. Oskouian's office. From there...hopefully I'll get a consult.

It's a six hour drive to Seattle but it's okay. I really "feel" right about surgery. I haven't felt like this in a couple of years, since I was dumped by my previous neurosurgeon.

I'll keep you posted!

Thanks, Dear Reader!

Timeline

I am constantly thinking these days of the new neurosurgeon I hope to go see...and soon! I asked my primary to refer me to Kadlec Neuroscience Center in Richland, WA. I have not heard anything about this place, not talked with anyone who has gone there, but I saw their ad, and I just had a feeling that this could be THE place.

In preparation for my first consult there, I thought I should create a timeline for the doctors, showing the high points of my medical history for the last six plus years. I thought I'd post that here.

******************************************************************************

TIMELINE FROM DATE OF INJURY TO PRESENT


April 4, 2004 -- injury incurred while training jumping horse. Fell onto (helmeted) head and, at emergency room, was diagnosed with 4 place fracture of the C1. I was 52.

April 4-12, 2004....hospital stay. No surgery or other treatment. Sent home with semi-rigid collar and told to return for follow up in 30 days. Also told to
remove collar in 8 weeks.

September, 2004... After being told by my neurosurgeon (no surgery had been done) that my C1 had healed "straight and fine" many times, I asked to go back to work (training horses). I was allowed back to work.

After a couple of months, however, I noticed that my symptoms were much worse after riding or working (ranch work). I also noticed I had to stay in bed for several days after a gentle horseback ride, due to the diffuse weakness, pain and nausea.

Winter, 2004... I asked to be put back on temporary partial disability and proceeded to try to work at my own pace.

Since my symptoms continued to worsen in spite of being told my C1 had healed "straight and fine," I began to wonder if I had a congenital problem that the injury had riled up. When I went online, the symptoms associated with Chiari Malformation seemed close to what I was dealing with.

April, 2005... I was seen by the Chiari expert at UCLA in CA. He told me I did not have Chiari, that I was "lucky to be alive. Get off the internet and get on with your life."

My condition continued to worsen. I was not able to do much work at all and entirely unable to enjoy hobbies or life outside of work. I began to visit with the neurosurgeon at a Chiari center in N.Y. online via email.The neurosurgeon felt that I probably had cranio-cervical instability (vis a vis a traction test he had me do at home, approved by my primary treating physician).

January, 2007.... I traveled to NY for a consult. From a fine-cut CT, the surgeon found that I still had a very large break in the C1 (3 years post injury). "You are walking around with a broken neck," he said.

From my list of symptoms, from in-office testing and from new imaging of the lower spine, he diagnosed me with occult tethered cord. He felt the injury caused the OTC to become symptomatic. It was also practice at that facility to cut/release the filum terminale (if suspected to be too tight) before their "extraction" craniocervical fusion.

November, 2007.... I traveled back to NY. I underwent the "Invasive Cervical Traction," where the skull base area is examined via CT while under 45 lbs (in my case) of traction. From this test, I was told by the chief of neurosurgery that when I suffered the Jefferson Fracture in 2004, I also had suffered dislocation of the occipital condyles (the skull broke loose from the spine/C1). I was told my skull had fused itself back but at a wrong angle, slightly down and to the right.

I also was told by this neurosurgeon that I "have A chiari but not Chiari." I understood him to mean that I have low-lying cerebellar tonsils, but not Chiari Malformation. This was confirmed later by the first neurosurgeon I saw there.

The next day, I underwent surgery for the tethered cord. During this surgery, it was found that I had 2 dural ectasias (of significant size and weeping CSF) and a very large mass of arachnoid adhesions.

According to the OR report, these were dissected to reach the filum, and the dural ectasias repaired.


The plan was set for me to return in a month to undergo the CC fusion. However, because I had mild osteoporosis, my neurosurgeon felt I should undergo 12 months of some sort of bone-enhancing" therapy to strengthen the bones before fusion.

Therefore, I underwent 6 months of pamidronate treatment (IV) at The ______ Cancer Center. Even before I had these treatments, my osteoporosis had been downgraded to moderate osteopenia.

After that, I did six months of daily injection of Forteo, again to strengthen my bones. This was prescribed by a hematologist at OHSU, where I had been referred by my local hematologist.

My hematologist finally said that he felt my bones were good enough for a fusion surgery.

June, 2009...I was scheduled for the fusion surgery in NY. However, at the time I went there, this center was experiencing some problems which ended with my surgeon no longer being allowed to perform surgery until the procedure is first approved by a hospital review board. The review board did not approve my fusion surgery. I was told that my C1 had "spontaneously healed" because of all the pamidronate treatments and I was no longer unstable and, therefore, did not need a fusion.

When I came back to WA, I went to visit my hematologist in Portland (OR). I told him what I had been told, that my C1 had "spontaneously healed." He told me that just does not happen. Non-union bones do not suddenly fuse themselves after four years.

November, 2009... I decided to seek another opinion. I went to see a neurosurgeon at a large hospital in Portland. I had many tests done there, and the neurosurgeon told me that the neurosurgical team went over my imaging. He showed me where my C1 is still non-union in 2 or 3 places. He stated they wanted me to have the fusion surgery. I thought about it for some time, but finally concluded to myself that there was something that did not quite "fit" for me and and that surgeon/facility. It might have just been "me." Whatever it was, I decided not to pursue a fusion.

From about February, 2010 until January 2011, I had made up my mind not to pursue a fusion. However, my symptoms have worsened and worsened. I began to feel once again that I would like to find a capable yet friendly neurosurgeon who would not mind giving me all the information I need about a surgery, and hopefully he would offer me a stabilization surgery.

I saw the ad for Kadlec Neuroscience Center in the Oregonian and that is why I have come for a consult today.

oh, this is not good!

I am in the depths of suffering right now. I filled my prescription yesterday for oxycontin, and this morning when I went to take it, I noticed the pills were different. I took off my glasses and read the label on the bottle: they were oxyCODONE, 15 mg. I didn't take one!

I hate to think what I would have felt like if I had taken my regular 5 mgs of oxycodone PLUS the mistaken 15 mg of oxycodone! (For those who do not know, oxycodone is "immediate release" and oxycontin is oxycodone BUT "extended release."

My usual regimen is 2 oxycontin a day, one in the AM and one at night. Then I take oxycodone throughout the day for breakthrough pain, 5 to 6 per day. This does not take care of the pain completely and some days, I feel awful rough.

But now I can see what good the oxyCONTIN does for me this morning, not having it (at the time of this writing) up to 4 hours late. Oh my! I don't feel withdrawal symptoms so much (such as chills) but I just feel the PAIN that is happening when the oxycontin is covering it up. And oh dear, not good! Now, I understand why people addicted to oxycontin break into pharmacies, quite honestly.

Addiction: this might be a good time to talk about that. No one likes to be addicted. And I do not feel I AM addicted. However, my body IS used to having it. I'm not addicted to the action of getting a glass of water and taking a pill every 3 hours. I do not feel a "high" when I take my meds, so I certainly am not addicted to that! I just am so glad that there are drugs out there that help mask this central pain because this is surely reminding me that I have some severe spinal cord pain happening!

I can't think right now of the word that is used for when your body is used to getting a certain thing (cigarettes, alcohol, coffee, soda, and yes, medication) versus addiction. I have heard over the years and have also read on medical sites that someone who is in pain, real pain, will NOT become addicted to the pain medication. Their bodies are accustomed to having the medication, but the patients themselves are not addicted to that behavior.

I always think that proof of this are the hundreds of people I know and have seen on support groups over the last 5.5 years who are so eager to get off the meds. Everyone I know with central pain wants to be off the meds, and some even go through the process of getting off of them (always having to go back to taking them, however. Short of a miraculous healing, there is nothing natural or herbal that can be done for spinal cord/brain pain. You can't meditate your way out of it).

Well, what has happened this morning is that I called the pharmacy as soon as it opened, speaking with a very kindly pharmacist with an Australian accent (don't we northerners love that accent!). He told me he was not on duty yesterday, but that he would make the switch (take back the oxycodone 15 mgs and give me back the correct oxycontin 15 mg) when I bring it in. I told him, "I live 35 miles away and I do not drive. I can't get there today. Could you have a courier bring it?"

Right now, I'm waiting for the taxi driver to bring the correct meds. Great idea they had, hiring a cab to bring it out here. I've taped the top/cap of the wrong med and put it back into its original pharmacy bag, stapling the top. This was a request from the pharmacist so they know they are getting the full 90 back.

The druggist said, "If it's any consolation, the pharmacist yesterday, his daughter was in labor having his grandchild. But I'm so sorry you've had to go through this!"

I replied: "That's okay. It's simple human error. No bad was intended. I'd hate to have to pay for every mistake I've ever made. I'll probably be just fine as soon as the right med gets here."

He said, "Yes, I will, too!"

Litigation: Of course, your mind goes to "should I call a lawyer and sue this place for this error that is causing me so much pain?" After all, it is a big, national chain of a place.

However, I'm not that kind of person. I can't take credit for it, I just am not wired that way. If I ended up in the hospital and suffering for a long time or whatever, then I'd certainly consider making someone pay the damages for their error. But, if I just suffer for one morning, and all is fine as soon as the meds arrive, I just can't even begin to consider suing anyone.

As I said to the Aussie pharmacist, "I'd hate to have to pay for every mistake I ever made!"

Bottom line: When you open a new bottle of meds, do NOT take them if they look differently. Even if the label says the right med, if the pills look even just a little bit different, don't take one! Call the pharmacy and talk to the druggist. Call your doctor if you need to. You might find that a different company is making the drug you take, and thus the pills are differently colored or shaped. If this is the case, then that is fine.

Another lesson: if this ever happens to you, if you live far from the pharmacy, then ask firmly for them to deliver the meds as soon as possible. I think they will do it, their butt and reputation are on the line. In my case, the pharmacy folks were wonderful.

Sigh...taxi is not here yet. I'm waiting!

Compulsive List Making

If you think about it, you can create lists and notes and cross-references to infinity, to the nth degree.

I have a compulsion to make lists. But not just lists of things I need to do, I do make those lists but then I re-list the lists in sub-categories, such as: "Things I must do tomorrow," and then I relist the items in the order of priority. I cross reference things into a notebook I use under letters of the alphabet. Insurance, under I, will say, "see The Hartford" or "see Simcoe" (a local insurance company).

I keep all of my lists in my notebook I call my "working memory," and even tho I rewrite my lists, I enjoy going back to several different pages crossing off ONE thing I've accomplished on several pages. It makes me feel like I've achieved more than I have!

And "cross off things done on list" is on my list too!

I've been overwhelmed with paperwork and desk work and computer work for the last two months. I've had to research and select and arrange our auto insurance; our health insurance (we are dropping our Medicare Advantage plan because they stopped offering it in our area and because, with Obama-care, the premium went up over 100%. We are now on just original Medicare with a drug plan); our homeowner's insurance and our re-finance; and many other clerical things.

Clerical type things make my brain burn. I also in that time period wrote an article about our neighbor (with her blessings!) for a magazine, so there was that pressure to do it right and get it done on deadline.

I hate every single thing that has to do with my left brain. My injury was on the left side (I know because I still have the helmet with the divet in the felt showing where I laned on my head) (and I know because the MRIs show the lesions on the left brain).

I LOVE the right brain, the creative side. Mindlessly painting a wall or a door; cooking and baking; drawing; gardening, you get the drift.

Making phone calls; figuring out how something works; learning some new task (like how the new FoodSaver works) is all daunting to me.

And I keep these lists because I have anxiety that I will forget if I don't write it down. And my speech therapist back six years ago told me to make lists because if I didn't write it down, my brain would loop thoughts of it trying to hold onto it in my memory. I could let it go if I wrote it down.

I keep a list in my notebook-working memory. I write a list down on my calendar block saying what I did today. When I ordered something, joined something, sent away for something.

I have various file boxes, more than I can count without looking. I just organized a new expandable file with insurance and mortgage information. It's good to be organized and know where to find things. Oh that reminds me, I have a list of "where things are stored," but I can never remember where THAT LIST is STORED!

Problems with thinking plague me as I muddle my way through. Today, I had to call the auto insurance company. THANKfully, I got a nice man with a clear voice, easy to understand. I started off with my caveat: "I suffered a fall onto my head and have some trouble with thinking and understanding. I may ask you to repeat things and ask you to wait while I take notes on what you just said. I hope you understand."

I laughingly told him an example: I was reading all of this material sent to me by the insurance company, and it kept referring to "the covered vehicle." Each time I read that, I seriously thought it meant the car we keep in the garage, because, since it is in the garage, it is COVERED. A couple of hours later, it dawned on me: Oh, it doesn't mean our car in the garage, it means the car covered by their insurance! Oh yeah!

I always have trouble with nouns, the names of things. I know I have many readers who also have this funny symptom. Today, I was wanting to mention something about an envelope and ended up mentioning an elephant. This can really be entertaining at times!

I know my list making is compulsive because, in June, 2004, I started seeing a physiatrist as my primary-treating-physician for my work-related injury. Dr. R was funny, telling jokes all the time, a lot of fun. I felt the need to give to him each time I saw him (even if it was every two weeks or every month) a list of my symptoms. This list, typed, was always a page and a half long. It got to where I would give the list to him, and he'd say, "You know, there's a name for this, it's a mental illness called OCD, all of this list-making."

That made me feel rejected and judged. But I just told him back, "I don't care if you don't read them. I just don't want you to ever say I didn't tell you about such-and-such symptom someday!" I think that kinda put him back into his place, and he realised he better pay attention.

Ginger and Nausea

It pays to have friends who remember things about you and read your blog!

My friend read this blog about nausea and the next thing I knew, I had a small package in the mailbox from her, with two tin boxes of ginger drops! Wow!

And you know what? I'd forgotten how well ginger helps. I have a bottle of ginger ale in my refrigerator that I simply forget is for nausea and I have the spice container of powdered ginger for mixing up with water and ice and a bit of sugar. But, one must REMEMBER to use these things!

One of the brands of ginger drops that sent to me is wonderful. Made by "Newman's Own." They are tasty and comforting to take. I have the tin right beside the bed now and even my husband will take one when he feels that his stomach is upset. They truly 100% work!

The other kind is made by Altoid's and they are HOT. Like fire in the mouth. But they do work. I have that tin in our pickup.

Thank you so much, dear friend! For the tins of ginger drops and for remembering that these exist and work so well! God bless you!

excerpt from a telephone conversation yesterday...

"I ask you to be patient with me, please. I can't hear very well, and I also have brain damage, so it's hard for me to understand sometimes."

Who wants to tell a perfect stranger that they have brain damage? No one! But I do, and more often than I care to admit. Now, some folks might think that is being "negative" or stating a "self-fulfilling prophecy," but to me, it just "is what it is." And I can't pretend to understand, especially about things that are important to comprehend (no pun intended) like insurance!

The statement above was made yesterday while talking to a woman for United Health Care, which provides insurance for AARP members. I would think she'd be used to talking to the elderly and know that she needed to slow down and repeat herself often.

I only stopped and said that because I could hear the impatience in her voice. When I would ask for an explanation or request that she repeat something she'd said, she was started to "sigh" before answering. We all know how it sounds. And I don't take it anymore. I was just trying to find out if my husband was firmly subscribed in their insurance, since he did not get his welcome letter and I had received mine.

As it eventually turned out, I had a good reason to call them and find out! After I asked her to be patient, she softened somewhat and told me that they were getting lots of people calling because the new membership cards had not been included in the welcome letters as they should have been.

I just thought I'd write about this for the sake of others reading here who have problems with thinking. If you haven't already, then tell yourself it's okay to tell someone on the phone that you have troubles with thinking and you need them to talk slower and to explain things. Even practice it out loud a time or two. I learned that from my speech therapist who I saw for six months after my injury. She called it "rehearsal."

Also, if you can, determine to be self-depricating. These people on phones have a rough job, dealing with folks all day. I wouldn't want to do it. So, if you don't take yourself too seriously, that usually creates a "vibe" with the person on the other end of the phone to where they will move mountains for you.

What I mean is if you ask for a repeat often of the same question or fact stated, you might start the next request with, "Oh, my silly brain! I'm sorry to have to ask you again. It seems like I can't add 2 plus 2 today!"

This way, the person on the other end isn't feeling defensive and thinking you are blaming her/him.

There's an old adage about this sort of negotiation-personality. I can't recall it exactly right now (silly brain!) but it's something like, "You can catch more flies with honey than pig...er...ah....doo-doo!" I guess the honey is sticky and therefore catches the flies better. 'Cause I sure do know that pig doo-doo attracts plenty of flies!

I hate calling on the phone for anything these days. Perhaps this is one of the reasons why. Not only is it difficult to understand someone when you can't SEE them talking, but who wants to have to put on a happy face and admit you have brain damage??? But, we all have to do our daily business when necessary on a phone, so this is the way I have found to navigate through it all.

great pic of my old friend

I don't post any pictures of our other dog, Quincy, because he looks as bad as I do in pictures! But the other day, I looked up and saw him lying on top of the back cushion of the leather loveseat, and with the red pillow below him and the chile--colored door behind him, I was taken with the beauty of it all. I grabbed the camera, told him to STAY, and surprise! he did! And the result is the picture of my old buddy, Quincy.