Life goes on..

I really don't have much new to say today, just wanted to check for those of you who pop in. I'm back to work after the funeral. It's a good thing the walls around my desk are so high so people can't see me cry. I knew this would be hard, but no idea just how hard.

Things that get me thru the day.....

When I was young I heard a school counselor tell a group of us, "If you stood in a circle with everyone you know, you all put your troubles in the middle, everyone would take back their own." The older I get the more I believe that statement.

A woman at work told me the other day that based on all that has happened in the last 2 years, she doesn't know how I am able to get up and face the day, let alone come to work and be productive. So I thought this would be a good time and place to reflect and share what keeps me going...

Fist, my mom Nancy. She was incredible and my greatest source of strength and inspiration. She taught me by example how to think positive and to press on through adversity without feeling sorry for myself. Losing her before I could appreciate her as a friend was the greatest loss of my life.





Second, Bobby my DH and best friend. He has loved and stood by me through thick and thin. We lack any day to day support from our families so we have learned to lean on each other.

Third, my best friend Carla (sorry no photo available). She helps mostly by giving me either a hug or huge kick in the a_ _ based on what she thinks will help me the most at the moment. When my dad was dying and my sister was on my nerves, she drove an hour in the middle of the night to come be by my side.

Fourth, DH's daughter Kelly. I hate the word step, so from the beginning I have referred to DH and Kelly as my "package deal". DH and I have been together since she was 3. DH, Kelly's mom and I raised her together. Now 22, she has turned out to be a wonderful young lady.



Finally there is the menagerie that live with DH and I. DH and I never had any human children together, but we have raised many of the "fur" kind.
Kitties:
Salmon, Yoda, Sir William MacGreggor and Matilda.


Lastly, Heather the Australian Cattle Dog. Heather belonged to DH's best friend Ardis. When Ardis died last year we inherited Heather. For many months we debated if we were the best place for her. She stayed and we both agree it was the best decision for all of us.

Combined these influences give me strength, support, love and distraction enough to press on. It is amazing how a person has to put aside his/her own pain, discomfort, sadness or whatever may be weighing on their heart and mind when someone else needs their love and attention.

Getting up, going to work, caring for DH, the house and the fur children has never felt like a choice. It is simply living my life.

Who couldn't use a positive distraction???

My Emoticons for today (notice the prevalence of purple!!) reflect a slightly different mood than the posts since my dad's passing. While never a HUGE baseball fan, it is hard not to catch the Colorado Rockies fever that has engulfed my hometown.
Much to the chagrin of our Aussie DH and I could hear the pennant clinching celebratory fireworks at Coors Field all the from our home 10 miles away.

GO ROCKIES!!!

Trying To Move On

In my entire life, I have never been so tired. My father's wife of 7 years, Alberta, my older sisters and I buried him last Wednesday, October 10th. His sons were unable to attend. The only good thing about ending this process, is that I won't have to do this again. I can only pray that I won't be the next widow in my family.

I lost my mom to MS in 1998. I felt closer to her and as bad as it sounds, loved her more than my dad, but I am taking this loss much harder.

Even though I have long been an adult, I am finding it hard to be an "orphan". I realize this term is usually associated with children, but I cannot find a better word that describes how I feel today.

The family of my husband of 17 years has embraced me, so I am hardly alone.

My father has one surviving sister and five surviving brothers, not to mention aunts, uncles, cousins, nieces, nephews, etc. My extended family is anything but small. We will go on for generations. Due to my parent's cross country move when I was young, I don't know any of these people.

A loss like this always changes a person's perspective about life. I have realized that my brothers, sisters and I are the oldest of our limb of our family tree. It is a sobering thought. I held in the back of my mind that there was always going to be someone older and wiser than myself. While there are many people in my life that are older and wiser than me, they are not my family. In addition to learning live without my dad, I am going to have to find my new place in the world.

Goodbye Dad

I lost my Dad, Charles (Chuck to me and Charlie to his mom) Halle yesterday, October 6, 2007. Even though he was 80 years old, I felt like we would have had more time. His oldest brother is in his 90s and still doing okay. In addition to myself he left Alberta "Bert" (his wife of 7 years), my two sisters and 2 brothers. I am going today with Bert and my oldest sister to make arrangements. This is like de ja vu (sp?) as I lost my mom in 1998. It seems strange to be the oldest generation of my branch of the family tree.

While we had our troubles, like most dads and youngest daughters, still I will miss him. The last few weeks he called me every Sunday. He wanted to know how the recovery from my surgery was going.

Prayers for my family are always welcome.

Back to Work - sort of

So I'm trying to get up to working full time. The problem is, every time I think I can do it I take 2 steps forward and 1 or 2 steps back. Last week I worked almost a full day everyday, then yesterday I started having the feeling like the creature from Alien had attached itself to the back of my head, accompanied by a nest of ants and a painless, but annoying "throbbing" I have never felt before. Okay, I expected to not "feel" the same. I learned that from the implants from last year's fusion. But this is just strange. I'm afraid to drive (main reason I have not left the house since Saturday.)

My co-workers have been understanding up until now, but I think their patience is wearing thin. I look good, my hair has grown back, I have more stamina, but days like today make me feel like a malingerer. I have read so many helpful things from people who have been through the same thing. They all say "listen to you body". I am still learning to do so.

The very good news is that the "mental stuff" feels so much better. Before the surgery, putting more than 3 or 4 coherent sentences together was a struggle. I can now actually pay attention to an entire conversation.

Am I just the sum of my diagnosis?

So many of my fellow chiarians are witty, interesting and forward looking people. For all my tough talk, I find it hard to not remain a sum of my symptoms and I wish for something positive and unique to say.

I am back to working almost full time, with the exception of time off for continuing doctor appointments for both me and DH. For folks who don't know, DH is billybobswildride. My work day is stressful only because we are understaffed and hence overworked. The work itself is not stressful. While I'm there I can pretend my life is relatively normal. I can even forget I am a zipperhead for a few minutes here and there. That is, until my left hand decides to have a mind of it's own or the scar itches to high heaven.

DH says I am brave and should not beat up on myself for continuing to have fatigue, clumsiness or memory issues. As a survivor of child abuse, positive self image has been a life long struggle. When usual "human" shortcomings are hard to enough overcome, the issues brought on by chronic pain and illness are a whole new ball of wax.

DH found a great new support site for chronic illness "But you don't look sick". One included story relates an exchange between the author, Christine Miserandino, and a friend. The author struggles to explain, in a way her friend will understand, what it is like to live with chronic illness (in her instance, Lupus). It is called the "spoon theory". It is the most articulate explanation of what living life with chronic pain is like I have ever read.

WHAT IS WRONG WITH WANTING NORMAL?

When I was a teenager most of my friends were artists types and people who really didn't care what the world though of us. I never wanted to be normal. I thought it would be dull and meaningless. I wanted to be unusual, unique and misunderstood. (What can I say, I'm a product of the 80's) This was long before words like physiatrist, platabasia, Chiari, high-tone, retroflexed, odontoid, or any type of syndrome would part of my usual vocabulary. I no longer want to be unusual, unique or have something most doctors never heard of, let alone understand or know who to treat.

It was not until my diagnosis that I found out not everyone had one arm that was always colder than the other, it was unusual to have tunnel vision in the very cold weather and it was not funny, normal or entertaining to trip over one's own feet.

Before the surgery I told Dr. O that success for me would be no more new symptoms and relief of the headache that had come to stay. In the three months prior it seemed like there was a new tingle, numbness or pain every week. When I described success, I thought I knew what I was saying. Now I am not so sure. After all the difficulty of the surgery and the seemingly endless recovery I want more. I want to be normal.

Like so many people with life changing diagnosis, I wait, read web postings looking for support and pray.

LET THERE BE SPACE!

Bear with me while I reflect a little:) Do you ever look back at a hard time in your life and reflect on a decision you made? Sometimes you wish you had taken a different path and sometimes you realize that a power greater than yourself led to to the right one? I remember reading some of the philosopher Immanuel Kant in college. He suggested that at a crossroads a person can make a choice simply by not choosing. That is often how I felt after my appointment with first appointment with a neurosurgeon on January 6, 2003. I knew as of that day that surgery, very scary surgery, was in my future. I also knew I wouldn't trust him to remove an ingrown toenail. I spent the next 3 months calling doctor after doctor trying to find a neurosurgeon who had even heard of Basilar Invagination, let alone one who knew what to do now. When came to the realization that there were no good choices in Denver, I stopped trying. I gave up on hope of any help other than medication. Then, Dr. O moved to Denver and everything became crystal clear. It was meant for me to wait for him. I know to my core that by choosing to wait, I had made, or been influenced to make, the right choice.

Now, the good news. Bobby, Billy Bob and I saw Dr. O yesterday and yes, there is SPACE! I knew from Dr. O's description of the procedure that there was a lot of bone and other "stuff" removed to give my brain more room, but it was a whole other thing to see it on an MRI. "Things" feel different in there, but it was rather freaky to have a visual to go with how I feel now. Dr. O explained that the positive cognitive changes are directly connected to the flow of the spinal fluid. He said my progress was right where he expected and to not be discouraged in regard to the continuing headache. The focus now should be moving on with life. I admitted to him that I have felt like such crap for so long that I don't remember what I used to like to do.

When Bobby first stopped drinking he said he was struggling with how to reinvent himself. I think I know what he means.....

For the first time y'all are hearing from me directly. I hope I can be half as entertaining and informative as Bobby. Forgive me if I repeat him from earlier posts. Life is getting somewhat back to normal. As normal as life can be for someone with Chiari 0, platabaysia, basilar invagination and ehlers danlos syndrome. Didn't realize how much I appreciate driving for myself. Access-a-ride was a great service, but there is nothing like going where you want, when you want and with whom you want. I feel like I have lost 2 summers in a row. When I went in the hospital it was spring, when I got out it was full on summer. Now that I am back to work fall is just around the corner. I went back part time on Monday and hope to be up to full time by the end of August. When I got home from working 4 hours I slept for 2. My coworkers have been more supportive than anyone could hope for. The headache continues...and continues...and continues. The doc says he is not supprised, be patient. Other than being headache free I don't know what else to wish for. Progress for rest thus far...well...the right foot and left hand have begun to get the train with the rest of me and not have minds of their own. The world famous Dr. O suggested I start knitting to help get the left hand on board I had to tell him I had already started this last year when she was doing more and more her own thing. Another MRI, I have lost track of how many this makes, and another doctor appt on Monday the 13th. Cross you fingers and continue those prayers and positive thoughts, I can use every one :)

Babinski Shminski

Sharon went to see the outstanding pain doctor and he confirmed what the neuro surgeon had told us... that her Babinski reflex had improved to normal. This is when the foot is stimulated along the side, someone with neurological problems will have their toes curl up. Hers used to, but now they curl down. Wa- la! -a normal Babinski. Her hair has grown back, and she's heading back to work after one more week off.

Switched sides

What a freaky two months. We've switched sides of the bed. I'm in here and Sharon is riding the handicapped bus every morning to be by my side. It is a daunting task for someone who not too long ago was in a post surgery ICU. She is a tough lady. Thank you to all our friends and family for your logistical support, prayers and well wishes. Click here to visit us at my liver's blog.

Gone fishing

Yesterday we went fishing. I thought this day would never get here. The day had an ominous start as my abdominal pain threatened to cancel the activities, but it calmed down with the help of pain medication, and off we went on the accessaride to a friends' house and then to a local lake up in the foothills of Denver. We had no bites, but got to watch the fish jumping in a late afternoon feeding frenzy.

The follow up

Well, it came time for the one month follow up with the neuro surgeon. we saw him and he did tests in his office on Sharon and he found some improvement with things that we lay people don't know about. This is encouraging. Sharon states that some symptoms that she does recognize have gone away or lessened. So, he said that at one month he had three goals. 1- to have avoided serious complications, 2- to see some neurological improvement, however small, and 3- to see some improvement in the headache. We have seen some improvement, especially in the quality of the pain, not necessarily the quantity. So she has met the one month goals. Next on the agenda,... life.

Happy fourth of July

The neighbors woke us up on July 4th at 12:00 am, making the dog bark. Then at 2:00, then at 3:00. Sharon has this weird thing she does when her head hurts real bad, she turns around in the bed, and sleeps with her head at the foot of the bed. At 3:00 I woke to find her feet in my face. So, I had had enough. I called the police. They came, but said that they wanted to get the neighbors on something better than just disturbance. That thing came the next day, when they caught their house on fire.

My central line girls

I was never familiar with a central line I.V. until this April when my 22 year old daughter got very sick and had 5 feet of small bowel removed because it was dead and gangrene. She was in ICU for 3 or 4 days, and the hospital for 14 days. I was very worried about that central line. It saved her many sticks, as they needed lots of blood all the time, and had to transfuse her.But I worried just the same. Then fast forward to June. Sharon had to have one. You can't have brain surgery without one. It's standard. So, when Kelly came over last night to deliver some specialty foods and visit, they were comparing scars. If it was a contest, it was a draw. They both sport very impressive scars. The 'Kelly belly' scar is nearly from chin to navel, with many various small scars from drains. Sharons' is just as impressive, from high on the back of her head down past her neck, over 6 inches. And they both have central line scars. It was a tie.

Signs Of Hope

Sharon is starting to show signs of hope. She has had one continuous headache since thanksgiving 2002. Her recent surgery is going to put an end to the headache. Knockknockknock.
That's me knocking on wood. But there are some subtle signs that things might be changing. For instance - her needing less pain medication. Her not having to use the ice bag. Her not waking me in the middle of the night to have me put my hand on her forehead. Ever try to sleep with your hand on another person's forehead? Try it. tell me what you think. ( kinda weird). So, I, We hope that things might be lookin up. In the meantime, when she feels up to it, I'll be filming a thank you movie for the great care received by the hospital staff and support from friends and family. In the meantime, cross your fingers, etc. All prayers are much appreciated, in other words.

HOME

The eagle has landed! It is a done deal. Sharon is HOME.
I pray oh I pray... home to stay. Yesterday as soon as she got the new pain medication, things changed dramatically. She
could feel her surgical incision, something that she had not
been able to feel through the splitting headache. The new
medication has the ability to last four times longer than what the hospital had. So I took her home with he help of Aunt Julie, the sweetest lady in the world. Last night we slept. I mean for the first time in 14 days, we both really slept.
Hard.

The days are melting together

I thought I was going to crash and burn from no sleep today. We found out that one medication had been reduced, and they fixed that. She had a good shower, and ate
a fair amount of dinner. Her Excellent pain doctor will have them try a new medicine on Sharon tomorrow and the hope is that she can once again FLY THIS COOP.

Slow but sure

Well, I don't have much to add. We seem to be stuck in limbo. Sharon's existence has boiled down to moving about during the in between doses of Dilaudid. Increasing pain at the end of that two hour period. She has started to eat a bit more, (I really love that) and her hair is already started to grow back. We're going to get a change of address for the hospital, and have our mail sent there. All joking aside, I really want to get her out of there, because there are lots of really BAD cooties that live there. Time for Sharon and Billy Ray to come home!!

LITTLE BY LITTLE

Poco a poco. One day at a time. Yeah, we were all ready to go fishing at golden gate
park. Not yet, anyway. Sharon needs to make some progress just to make it home.
Friday night was very scary. Yesterday, she slept the deep sleep of someone with phenergan breath. No vomiting, though, thank God. Today was 50% better than
yesterday. Today she had a shower, and actually ate some food. We watched the second half of doctor Zhivago(we started the first half in the ER when my daughter was in last month). Strelnikov. Lara. Victor Komerovski. Wow, not bad for me. Memory... what a concept. Well, I will have to see that movie 10 more times before I really get the point.

Going home-coming back

Well, things were looking pretty good. We weren't knocking on enough wood. Sharon started to
have such severe pain a few hours after we got home, that she could barely open her eyes.
When she threw up, that was it. I called 911. Three days out from brain decompression
surgery, severe pain, dizziness, nausea, and vomiting... enough for me. Meets my 911
criteria. I can't drive. Even if I could, I didn't want her to vomit again. Brain surgery and
vomiting do not go hand in hand. The paramedics were so helpful. In the hospital she had a lumbar puncture and another CT scan to add to the long list of difficult experiences. They were finally able to get her comfortable around 1:00 pm today. This homecoming was just a dry run. The real deal coming up next.
Stay tuned.

BACK TO THE HOSPITAL!!

We weren't home 7 hours. Sharon's pain became so unbearable, she said "take me back."
So, as I was getting ready, she threw up. Not good. She got to ride in the ambulance.
I'll post again when I get a chance. Thanks again for all your support.


OK...phew! It's 8;46 am. I just got off the phone with the nurse. Sharon was in isolation this morning. Her white cell count was high, they did a spinal tap to check for infection in the CSF(cerebral /spinal fluid). No infection in there, at least. They suspect infection, but have not narrowed it down. CSF is a term familiar to all CHIARIANS. It is what they don't have enough of flowing around like you and I. The surgeon says that while most people have 4 milimeters of space between the brain and spine for flow, Sharon had less than 1. More later.

The bad owie

Today was a busy day. Sharon got up several times to walk around the ward. if all
goes well, she will get to fly the coop tomorrow. Things are going well right now. Everyone reading this- please stop right now and knock on some wood. Or say a prayer. Do something. Sharon smiled more today than she has in weeks. Things had gotten quite tense. The tension leading up to this event was immense. Sharon and I thank everyone for all the prayers, and well wishes. Me and the cats cannot
endure another night without our 'alpha'. Sharon, come home!

THIS MOVIE COULD NOT BE ADDED LAST NIGHT



THIS IS TODAY'S MOVIE

The healing

Now begins the healing. When she woke today, Sharon said she didn't know they made pain that bad. She called the nurse, and asked for an ice pack, and the nurse
scrambled to give several injections into her central line IV, but Sharon snapped
"I need ice!!!". So, we are trying to find that nurse so she so she can apologize. She
lost her composure for a moment, but hey, the doctor used a drill bit to remove
a 2 inch by 2 inch section of her scull, sew a patch over that hole, and screw a metal
plate over the newly made space. This was all about space. You know how when
theres too much stuff in the fridge and you stuff the OJ back in and something
on the other side squirts out? There you go. Sharon's brain. But not any more.
So, she got up, walked, sat up, all that " we need to get you moving,prevent complications, yada yada yada...











The saga continues...

Surgery Day

Brain and surgery. According to Sharon, these are two words that should never have to
be used in the same sentence. I agree. The surgery went well. Sharon is recovering this evening in the ICU. She is very brave. I am proud of her fighting spirit.
(unless of course it's me she's having the fight with! Ha Ha) Go, Sharon!!

Surgical posterior fossa decompression

The big haircut

Today Sharon and I had to get a ride to her pre-surgery appointment. She stopped taking Celebrex a week ago to prepare for the surgery and the pain came. Bad. She was in complete agony. Three days on the couch with an ice pack. So, when she got to the surgeon's clinic, he had her admitted to the hospital.

So, she is there, resting after three hellish days of chasing the pain.
Tomorrow, the big haircut.

Step two

On May 3rd Sharon went into the hospital to have an MRI while in traction. This was step two in the quest to end the 5 year headache she has been suffering with.

So, the wait is over. Tommorrow the pre surgery, and then on Tuesday, 'The Big Haircut'.