u2 the saints are coming

Dennis says that Carol is going home soon..as soon as the infections clear. She cannot swallow, even with physical therapy. She can only eat ice chips. Its sad, because I believe that she will probably not live long. Its very sad.

My head hurts more since the brain swelling has gone down. The fusion anchors..whatever they are called, well when they get cold my head gets tender and hurt like the dickens.

I am going to Seattle tomorrow. Matt has been without power for a few days. The worst storm since the Inaugural Day storm, I think 12 years ago. That was bad, we were without power for four days. I finally gave up and drove till I found lights!
Matt is staying at Shelby's parent's house on the plateau.

Dennis and Brit are doing pretty well. They were shopping yesterday and called.

Sent out package to Jean and MA to Napa.

Dennis is up in Alaska right now.

u2 the saints are coming

u2 the saints are coming: "1. The Saints Are Coming - U2
"

Dennis and Britt's wedding

On November 24, 2006; Dennis and Britt married. We are soo proud of them!
See their picture, and even though they got married in Evergreen Hospital in Kirkland, WA..Mom Carol was able to attend at her hospital while recovering from Meningintis. She is doing better but very proud of our children.

Back in the NW

and working on Dennis and Brit's wedding. We met two nights ago with Carol and figured a lot of things out, the rehearsal dinner, Thanksgiving Day, and the wedding.
Wow. Now we have the rehearsal dinner, which we hadn't planned for, since Brit's sister(who is pregnant~high risk)and she just graciously bowed out, three weeks before the wedding.

So I meet with Oscar from the restaurant on Monday, I checked out the hotel that the out of town family is going to stay at, and lets see what else? Oh I got the dress, its very nice, and it was on sale! Lucky me. Just need a topper of some sort...hmm, more shopping which isn't my idea of fun and games.

Pain levels? Well, pretty high today, felt like hot oil was coursing in my veins of my legs instead of blood. Back still hurts. We are sleeping on an Aero-bed with a memory foam topper...seems to work pretty well.
Dennis left for AZ to check on things, and hopefully will be back about a week before the wedding.

The apartment is working out well.

I need to contact TCI regards billing, send out my mediation..but I had been waiting for one piece of information and they didn't receive it from Aetna either.
sigh.

Mass tomorrow with Dennis and Brit, downtown Seattle..might look after church for a topper for the dress.

more later

Leaving today for the PacNW!

Leaving today for the PacNW!

We expect to leave tomorrow around 2PM, and Dennis says if I am not ready to leave, I have to fly to the next stop.

HAHAHA..I am going to surprise him and BE READY to go!

Okay day otherwise, taking my time, and hoping for lessened pain on the drive to Seattle.

Tuesday and the days after

Had my SSDI application yesterday, but didn't need all the medical documentation that I had with me.
Received my Residual Functioning paperwork from TCI, but while it looks promising on the SS front, it is my life, and to have all those restrictions really written down in black and white, well its depressing.
I guess I am doing the right thing.

Monday

Went and had my car detailed...and lil red looks fabulous.

Dennis was apologetic about yesterday morning, and when I got home, I went to bed for four hours and slept like a log. I just don't have the stamina to get much more oomph going on.

Dennis wanted an apology from me, and while I thought I didn't, I did apologize for the situation.

Thanks Keesha for talking to me yesterday. I am still thinking it through.

Massage today with Gayla, another "early out" employee from Alaska.

Not well today

I did pretty well yesterday, felt hopeful that perhaps turning the corner, but today back again.

WHY???
I am so tired of dealing with this, I cry because of the pain, wonder how far I can go, want to be there for my family, and be productive again.

Maybe preparing my mediation letter has got the best of me. I dunno. I wish I knew answers.

My legs/ankles/knees hurt. My back nec and head hurt.

I am going back to bed.

Friday 20Oct

So I didn't sleep well last night, I guess going over insurance paperwork and the denial letters isn't good for my sleep patterns, eh?
I need more information to process my mediation, and the person that is in charge of reviewing it, well I hope that his silence to my emails is because he is busy.

Driving down to Tucson today, looking forward to going someplace else!

Spoke with Sondra yesterday, and she sounded pretty good, but not getting the treatment she needs for CM/SM.
I wish her the very best!

ASAP meeting

Well, today is pretty good, met with others with CM and SM, and new members joined us. Chiarian moment though I got the time wrong, I thought it was 10AM, and it turned out it was 11AM. Sigh, at least I was on time!

Its interesting to see newly diagnosed people, that are in denial, and I think that one person got a rude awakening, that this IS life changing, and that medication...and treatment options have to be utilized.
Interesting..also I wish those that are successful in their treatment would STAY involved instead of taking from those and picking the times to be involved; ie when they are impacted from the symptoms.

Fairly good day today, just the normal head turning issues, and stiffness. Slept pretty well.

Spoke with Keesha today, and Dennis and I will go visit tomorrow in Tucson.

Thats it for now.

forgot to add

I cut and colored my hair a couple of days ago. A few days shy of the six month mark, but I really needed a lift. It is much shorter than I am accustomed to, but it needed to be done.
Color? The same as it ever was.

I feel like I am still recovering from yesterday, drained and short on patience with Dennis. Its too bad, but our communication isn't what its supposed to be. I try, and he is eternally the joker, and makes light of my situation and he hasn't a right to do this.

TG he doesn't read this! LOL!

Another day

I will try and be better with this, write more often.

Baking brownies today, got a denial letter from SSI, but that doesn't matter as I am trying for SSDI.
Jane my PT says that my goal of being able to lift 30# is NOT going to happen by January 2007. I hate having my hopes dashed. I don't want to work on the ground, I want to work in the air.
With taking medication, I know that my employment opportunities are limited for what field I want to be in. Air transportation. USair is where I am going to try for, but its not going to be the better paying job I had hoped for.
Also, working for an airline, I will have the chance to help more people with air transportation to get to the "good" doctors. Sigh. Still I am working toward the goal of getting back to work by 2007....hopefully.
The last session of PT knocked the stuffing out of me...was in tears for most of yesterday. Couldn't sleep even with the Rezorem.

Hopefully Dennis will drive me to Tucson to see Keesha on Friday. If not, I will drive myself!!

more later...

no sleep, bad day

Well, thought I would update and put pics of my x-rays here...going back to sleep once I get this done. Did not sleep well last night, 4 hours and pain from overdoing it at physical therapy.

Told by my PT that my dream of again working as flight attendant was just a dream.
I don't want to work on the ground.
Paim in ankles, legs, head, neck, back. Not good.

September 1, 2006

Still in PT, had a rough day yesterday. On Wednesday used very light weights, but still had problems (1lb)and yesterday I needed ice all day. Spent most of the day in bed. Today we went went with no weights.
Hopefully I won't feel as bad tomorrow.

I got good news from Kris today in regards to Fonar. I am going to be a test study for their upright MRI's. They need a post-op candidate(chiarian) and I get their testing done for free. I hope and pray that my titanium plates and screws are acceptable to the testing!

I hope I can put my bracelets up here..and where did we get that money?? Weird. WF is on it now..
Dennis comes home on Sunday. YAY!!

Meltdown

Today(this morning and early afternoon) huge meltdown. The impact of my situation, my illness, my own depression hit me so hard. I am going to be responsible for my situation, acknowledge it, own it, realize it, not fear, and somehow, someway be comfortable with the "new" me. It scares me, but the realization is that this is the new me, and not something that is horrible, just the morphed into me.

I had a long talk with a great person today, Sarah, who encouraged me by her quiet way to apply for Social Security. There is no reason why I shouldn't. This EDS IS a nasty bugger. Ellen Quinn's words. And it is. My ankles, knees, and elbows hurt tonight.
My ROM is horrid, and PT is not good. Its a slow go. I e-mailed Dr B tonight, respectfully asking that he complete the ASAP form for doctors for patients that need to go for SSDI/SSI.
Please hold a good thought for me that things will go well. I hired Allsup for representation.

August 26th

Well, had another PT session yesterday, I do like my Physical Therapist, Jane. Ellen at TCI wants things to go very, very easy. I get tuckered out easily. One rep of each thing. I have had a "sleeping Kink" in my left side of my neck for days now, and not sure how to get it worked out.
I am diligent about getting this done. I feel a bit optimistic..yesterday anyway. Today NOT so much. Sad. I want to be back in WA state. That is my home. My only place. I miss my kids so much.
Anyways..I am hoping I can be "better" so I can apply for an airline job by January. With Dennis getting married in November, Check back in September for NY(TCI), and Christmas I believe its in my best interest to not job search until January. I had to cash in a bit of my IRA to subsidize my living. Sheesh. If I only knew then, what I know now.

August 24

another day, upper back pain. Still trying to reduce meds. Still a forgetful chiarian. I have had to take four flights in about 3 days.
I don't know how I got into with the TSA at Seattle airport, but they decided to "check" my carryon for gunpowder. They got my contact eye solution, and took that even though it was under 4oz.
I left my laptop at security, and I had to fly back yesterday to get it, and back last night. One flight was cancelled out of PDX, so I almost didn't get on the flight..whew.
But it was good to sleep in my own bed.
PT tomorrow. I hope that I will continue to sleep as good as last night. I tried the rezorem.

Lazy days

Feeling pretty good after PT on Wednesday, Aetna authorized -90- visits..but COBRA runs out at the end of September. I am hoping that AS will help with that. I think PT is going to be the key for me. I didn't realize that I was fused from C1-C4 in addition to the basilar invagination. Went over surgical report and found more information that leads me to KNOW I did the right thing...but 20lbs to take the pressure off? WOW! Glad its in the past.
I go back to NY to TCI on September 27, 130PM. I hope and pray that my fusion has taken.
Kim and Rob visited overnight here, we swam and had a great barbecue. I love having company. Kim and I then walked like over 2 miles last night, over an hour walking. It felt good, cept the dang shoes! I got a blister and walked the last mile barefoot. Took a good long soak in the tub.
More company this weekend then to Seattle for Brit's Bridal shower.

OOPS, my best friend from HS is 50 today!

Happy Birthday Bev...I called your Dad to get your phone number, somehow I have lost it..I pray you have/had a great day!

Never thought we would make it this far.

Another hot summer day

Pretty good day all in all. I had my first physical therapy appointment. My PT's name is Jane, and she seemed very good. However, I am the first Chiarian she has treated and had lots of questions. Plus the prescription that Ellen from TCI sent two different times had conflicting instructions.
We went over basics, and did some exercises. She then gave a very gentle massage and told me things I should NOT do. Isometric, bringing my chin back towards my spine, BIG NO NO! So I only did that a couple of times..and won't now again. And Aetna is paying for all my physical therapy, at least until the end of September when I change insurance companies. I would like to go back to work then, but I don't know if I will be ready.

Aetna still hasn't contacted me since the letter sent the 20JUL. Hmmm..I hope that means that a real doctor is going to review it versus a systems analyst denying my claim!!!
Dennis is going to be done around the 20AUG, so I might fly up to Kodiak to see him and see Suzi.
In Seattle I saw all the BVU girls we had a great time, sitting around at Katherine's new house overlooking a serene lake. I should of taken some picture but I didn't.
Been kind of depressed the last couple of days, weepy and all. Not like me at all..sometimes this situation is so despairing, whether I should go back to work, cash out the 401K for more recovery time...decisions, decsions.
Dennis called but I missed his call. blah!

Another day..SHITE! As the Irish say, and we love the Irish

Off to Seattle this afternoon. Need to get the tax stuff done this trip.
Dennis is on his way to Kodiak. I miss being up there. I love the people and miss them.

HA is pretty much gone, just the residual upper back pain that has continued to cause me lots o pain since the surgery. Well, before the surgery too.

Alaska!

I left for Alaska on the 2JUL2006 and spent a couple of days in Anchorage then down to Valdez to go to Dennis' boat. I was there until the 12JULY, then over to Kodiak until the 21JULY.
Here are some pictures. Some are while I was on the boat, others are in Kodiak.
Please enjoy them!
I am on the left, Trixxie and Helen. We perfected the Lemon Drop while in Pasagshak..but ssssh don't tell anyone. The salmon boat is in Anderson Bay, and thats Columbia Glacier, we had fun there cause it was so quiet. Then there is Dennis running the boat.
Good skipper!

another day...

I hope you enjoy the pictures..
The first is of my brain prior to surgery on April 28th. Dr Milhorat and Dr Bolognese did my decompression surgery. I was wheeled into the OR right on the dot. I was sooo scared to have surgery on my brain/neck. I introduced myself and tried to remember their names. I met around 8-10 people in the OR. Dr Carras was responsible for anesthesia. Dr Remy was in the OR, and I was introduced finally to Dr Milhorat. I was thrilled to meet him since he was the one that started TCI. The foresight on his part, and knowledge of chiari and the associated syndromes. Anyways, trying to get the IV line started well it was tough, Dr Carras had to try again. He managed on the second try, and soon enough I was asleep. Then I was brought back up, and there was like screws on the side of my head, and I felt like I looked like a deer caught in the headlights, searching around on how to get out of there. The doctors asked questions of how I felt with different levels of weight added to determine how much degree would be when they did the extraction fusion. When they released all the weight, I told them I felt like a toad.
Then ASLEEP again. When I came to, I was thrashing around in horrid pain, and I could hear the recovery room staff saying things like "we have given her something, something" and mercifully they put me back under again. All I could communicate was crying "I hurt, I hurt" over and over again.
When I came to again, I was in another room, called a PACU, and Dennis came in for a very short time to see me. It was so good to see him, but I was so drugged up I just remember seeing his smiling face and he looked sooo worried.
I spend the night in PACU and then the next day I was moved to NICU where I spent two days. I slept a lot. I kept getting tangled up in the wires/cords to the morphine pump, and getting woke up by the nurses for the heparin shots. Teeny tiny needles that had to be injected into my tummy. The back of my head was wrapped in that brown stretchy tape.
I think it was the second day I met Dr Kula, Denise and was asked different questions, and was told to move my neck. Well I had heard some horror stories about how if you don't move your neck, they move it for you. I didn't care how much it hurt, I was gonna move it NO MATTER WHAT..I didn't want someone else doing it for me.
On the second day, I did dangle my legs over the side, but it was quite the production to take a walk and by the time all the stuff was done, well I was done. Energy levels were down, and I would just roll back into bed(like a log just like I was told)
On the end of the second day I did some Hall Walking...didn't need a hall pass for that. Dennis escorted me, and it was short, but I did it. The third day, I didn't want him to help too much cause I wanted out of there, but as long as you are hooked up to the morphine pump you have to stay in the hospital. I was kinda scared to get out, I didn't want any of the complications that are mentioned after decompression surgery, extraction fusion.
So, after four days total in PACU/NICU I went to the regular ward, and spent two days there. Pretty noisy. I got spoiled in the NICU, own special nurse. Yikes how the other half lives. LOL. Nice people. Always calling me "honey" and "sweetie" but I didn't get the "good food" BAD BAD FOOD!!
So, I had surgery for Chiari, retroflexed odontoid, Eagles Syndrome, and fusion. Laminectomy c1, partial laminectomy c2, fusion c3/4.
Still in the recovery process right now

Day 1

Hi there all. This is my blog to journal my chiarian life. Its been a tough road. I was in a motor vechicle accident on August 27, 1987. I was driving a Chevy 2 door, and was in the number one lane when another driver, thinking she would get ahead of the traffic, whipped past the second lane and realized too late that she would hit me. She was going approximately 35-40 MPH. I saw her mouth "Oh shit!" and I just clung onto the steering wheel and watched her in the rear view mirror.
I went to work, the other woman's car totaled. By the next day, I was crawling around on all fours. I couldn't stand upright. Dennis had left to go fishing in Alaska two days before and I had two little boys to care for. Matt was 5 and Dennis Daniel was 3 years old at the time. They ate lots of toast.
I sought out chiropractic, massage therapy. I tried to go back to work at Alaska Airlines at the Oakland airport as a customer service agent, but I couldn't even pull open the drawers. I left in tears and spent another month off work.
I sought orthopedic specialists, begged for relief from the pain, no such luck. I finally settled after transferring to Seattle in April of 1988. In California at the time you were allowed a year to settle.
Fast forward, I continued to work, with episodes of pain, usually three weeks of muscle relaxers, hydrocodone and I would be fine. I worked out, worked full time, Dennis Patrick worked in Alaska, and we lived, traveled and laughed. We have been to Australia, Mexico, England, Ireland..Alaska on the Kodiak and Determined to visit Dennis Patrick.

I transferred to Airfreight in 1996, and worked there until 2000. Just after 261 went down on January 31st 2000, I got word that my bid to Bellevue City ticket office came through and I transferred there. I think the emotional stress and sadness of 261 put me over the top, as I don't think I have ever been so sad before about an event. I rushed to airport the day it happened, and helped at air cargo. I woke up the next morning with hot tears in my eyes at the sadness of it all.
At any rate, I continued to work at the BVU office with some of now my closest girlfriends/co-workers. Tracee Stubrud, Suzi Smith, Kim Thayer, and Katherine Torrence. They helped me as much as they could but there wasn't anything that could be done about the pain issues I was suffering.
I sought out relief with Group Health, and never had a MRI...told I had "coat hangar syndrome" with a rheumutologist telling me its right here in this book. After 2003 I changed to Aetna, where I finally got MRI's of my neck and found that there were disc herniations, dessicated disc, lordosis of the c-spine.
I received treatments including epidurals, facet nerve injections, radio frequency lesioning, prolotherapy(got a collapsed lung with the 5 th treatment), massage therapy, rolfing, chiropractic. Sheesh....all these things and still pain.
In October 2003, I took six weeks off seeing if taking time off would help my pain levels, it did not. I returned to full time work at the Bellevue office and just tried my best, but came home in tears. I found support on line with Brain talk, and other chronic pain support boards.
In April of 2000, my step-mother Juanita passed away. I dearly loved her. I became responsible for my father's care due to Alzheimers. I had Power of Attorney for his finances, responsible for selecting his home amongst other things.
In May 2004, I was awarded a bid to Washington DCA to work for 60 days. I was unable to go until the beginning of June 2004. I worked with John Fujioka, Pam Curtis, Marcos Comotto, Connie Carlson....one other I cannot remember right now. We worked 6AM-930AM then we would catch the shuttle back to the hotel for the free breakfast at the Embassy Suites. At the urging of the hospice care I took the bid, even though my father was ill...he passed on June 24, nine days after I arrived in DCA. I returned to Seattle to take care of his arrangements. I returned and finished out my assignment in DCA.
I returned to work in Bellevue and warned the girls that Bellevue was on the chopping block, and that our jobs were in jeopardy. The closure was announced on September 9, 2004 with a closing date of December 31st 2004. We would remain on the payroll until January 5, 2005. We all took the VSI(Voluntary Severance Incentive) that was being offered to management as well.
I figured that if I lasted two more years at best, I would walk out the door with nothing. Now in hindsight, I would of taken a medical leave as eight months later I found out that I have chiari, Ehlers-Danlos, Thoracic Outlet syndrome, Eagles syndrome.
I requested a new MRI in July 2005 from my pain management doctor, and he ordered one specially through CDI in Mount Lake Terrace WA to find any "nuances" surgical or otherwise. The Chiari was apparent from that MRI to the doctor there.
My search began in earnest for answers. I requested and got a referral to Dr Ellenbogen at the UW, who ended up calling me and dismissing me by phone, him telling me to "run if anyone wants to operate on me" and "those meds aren't the ones I would prescribe to you". I continued my search on the internet. I found the Chiari Institute in Great Neck NY.
I filled out a questionaire, and received an appt date in November. Dennis and I went to NY and I had additional testing in NY, CINE MRI, CT brain scan, thoracic MRI, and went to meet with Dr Mora, and Dr Bolognese. The good/bad news was that I am a chiarian and all the above syndromes.

On April 28th 2006 I had surgery for decompression, extraction fusion with Dr Milhorat and Dr Bolognese. Dr Douglas Carras was there as anesthesiologist. There was about 10 people present besides myself. I was scared, but when Dr M introduced himself I was less scared. Dr B had called the night before at the Andrew Hotel and spoke to me about what was going to happen. He called at 1015PM and said that Dr M had decided due to my relatively high score on the Ehlers Danlos scale that I needed to have invasive traction. I was put under and brought back up with screws on either side of my head, and I was even more scared. The added weight under fluroscopy and then took it off, and I told them I felt like a toad with all the weight off.

I was put under again, and Dennis had to wait 7.5 hours for me to come out. Then he was told it would be too distressing to him to see me the way I was. Little did he know that I was thrashing about crying "I hurt, I hurt, my head hurts", and crying...hearing the doctors saying "we gave her this we need to give her this" and mercifully I was out again and when I came to, there was less pain and I saw Dennis.