Good Evening World! Well, life has changed so much. My dear husband, Dennis, died of cancer on April 20, 2019. I miss him so. The last year of his life was filled with a MVA and diagnosis of lymphoma 2 months after the head-on car accident. The other guy's fault. Dennis had trouble walking on September 12, 2019 - I rushed him to Evergreen Hospital - where he didn't leave and was transported to UW Montlake. He ended up having a big surgery to remove tumors from his spine. He spent 3 weeks in hospital and returned home at the end of October 2019. He received his first chemo treatment in hospital. The next months were filled with trips to Seattle Cancer Care Alliance. When Dennis started having falls and cognitive issues - his doctor said that palliative care was the next step. Dr Smith said "get your affairs in order" I was in shock. How could this be? Dennis and I were married for 38 years and together for 40 years. Father Vu renewed our marriage vows at our house days before Dennis passed. Whew... this was hard to write and relive this time. I miss him so. So... here goes with what has happened in the interim from when I first started this blog. It's more of a journal - since I don't write very well. I do type just fine! Matt and Stephanie married, bought a house and had two boys Ryan (b june 25 2015) and Daniel (b 12/31/2016) In January 2020 - Matt and Stephanie seperated. They are going through a divorce and the boys are here half time. Dennis Daniel and Britt are still together; making a beautiful life for their 3 girls. Louisa, Mary and Margaret. They live in Sammamish. I don't get to see them as much as I would like.. I'll update more when I have more time. LOTS to catch up on.

Check out Matt and Stephanie's Wedding website:

Check out my Wedding website:


Dennis and my son Matt is getting married on August 10, 2013! Here is their website - I'm so excited and Matt and Steph are so happy together!

November 10, 2010

November! I cannot believe it's November already! I'm in Physical Therapy and I'm getting better every day. I'm so glad the hardware is out of my head. It goes to show that the hardware and the fusion from my skull to C-4 was oh so wrong for me.

I haven't had a CM headache - I am getting range back and I love my Neurosurgeon - and I love my physical therapist, Karol at Novelty Hill Physical Therapy.
Now to get my health back to where I was in 2006 - where I should of been IF I just had the Posterior Fossa Decompression. There is some emotional issues and anger - I didn't have the chance nor the decision making process to decide about the extraction fusion. That still makes me angry - how am I to ever know if the PFD would've of ever worked now? There is a level of frustration - four years PLUS of pain and suffering = would I have returned to work? Four years of SSDI? Sleepless night? Anxiety and panic disorder? No more house - No more retirement benefit... so much loss and nothing to show for it. I'm back to less than square one because of THEM and they have EVERYTHING - and they convinced me that I NEEDED IT. AND PT and other medical professionals say I didn't have EDS - I don't believe any of them anymore.
Don't believe - question authority - and remember you cannot go back if you are cut upon.

another day in the life of me

okay... surgery with Dr Rod Oskouian at Swedish Hospital in Seattle. He took out all the posts and the fusion to C4 from the posterior. Then he fused me from C4 to C5.

I went in Friday the 16 of July and checked out on Monday 19 of July. Quick trip, eh? MUCH better than the first time getting this Chiari thing done!!

Here's some pictures of the hardware taken out of my head.

Holiday! Merry Christmas

Well, here in the PacNW, there has been tons of snow, cold weather.

Allie the new dog loves, loves the snow. She is a pretty good helper dog when I fell in the airport about two weeks ago. No one else around, called Allie over(she looked very surprised that I had fell) and then used 'brace' to help me up.

Too cute for words...

Too cute for words...
Originally uploaded by keri.meyers

Another of my baby GD Louisa, isn't she a doll?

Swing Lulu, Swing!

Swing Lulu, Swing!
Originally uploaded by keri.meyers

my baby girl Louisa!

Baby girl! Louisa !

HEY THERE

we are trying to have September named as Chiari and Syringmyelia month. We hope to have it done by the Conquer Chiari Walk across America on September 20th.

Also, I cannot get my topomax, the insurance company is saying 'no' to it. Blah to them!

I got the pharmacy working on it, and the doctor's office working on it, and I am working on it.

NY-TCI

It's Saturday the 2nd of August, yesterday I spent the morning at Manhasset Diagnostic Imaging, MRI'd from top to bottom.
It was kinda cool, when I checked out, with the payment/insurance window, the lady says "insurance?" and I say "Medicare" and the insurance lady says "have a nice day" WHOO HOO! I have never ever had it that EASY!

So we have a quick break and head to down town Great Neck and find Bruce's(which btw is a great place to eat) we order a bowl of lentil soup, and of course you get the plate of rolls, and a plate of goodies, like frosted brownies, and other assorted goodies! They also give you a bowl of coleslaw which is pretty dang tasty!

So we leave Bruce's and head to TCI. I am assigned a new nurse, Jungut(sp) nice nurse, but kind of hard to understand. I am taken back at 100PM and I am there for over an hour with questions.

Then I meet Dr Shelat, he is a very nice doc. He says the fusion is good, the chiari is good(well as good as it can be) then discusses the bottom end. That not so good. I have occult tight filum, and he proceeds to do the physical tests on me.

Then I try the heel/toe walking. That was semi-ok. Then I do the one foot in front of the other, which I CANNOT do. Well, I can, but not well. My balance is shot! I finally bent my knees, and tried to walk the line that way. I got a little further.

All in all, a good visit. I went for answers and you always get answers at TCI.

So we are off to NY city for the night then to Newark to fly back to Seattle.

Oh and I have some new prescriptions for the Pronex neck stretcher, the new improved neck brace. Also he thinks I should try topomax for my headaches.

That's it for now.

Hershey PA

Last night we ate at Houlihan's in Hershey. GREAT french dips!

We stayed at the Best Western Harrisburg, not the greatest of places to stay. They didn't have towels cause their washer broke down and they had to haul all their linens/towels across the street.
After a long drive well it would've been nice to have good shower with clean towels!

Neck hurts. I worked on my website livingwithchiari.com and bought the .org site as well.

Off to Cooperstown for the Baseball Hall of Fame.

4 hours in the car, well I guess I will survive.

Banquet tonight

Tonight is the last night of the banquet, and I am thrilled to be here. Networking with the doctors, the patients, and telling others about our group.

I bid on a couple of items in the silent auction. The silent auction is items that have been donated throughout the year, and then the items(brought here to DCA)are placed on the tables, with a sheet with minimum bid, and your name.

I really like the hand-made things! BUT, I really, really want the leather jacket with a fox fur collar!

Anyways, resting up before the dinner tonight at 7:00PM

Have a great day!

Registration

Well, nice registration, good goody bag!

Saw Ellie McCallum she is a sweet lady and it was good to see her.
Dr Kula is here and a nice doc as well.

haven't run into the people that I was supposed to see, not yet anyways

DCA!

We got here, Sheraton Crystal City.
The front desk upgraded us to a club room without charging us, which is very nice.

We were going to do a memorial night tour, but Dennis and I are both bushed.

I forgot how hot and muggy DC can be in the summer.
Haven't seen anyone I know, and hope to meet lots of folks here!

Here we GO!

wednesday we are off for WA DC!

We get to go to the ASAP conference, and I am excited to be back in WA DC again. I worked there in 2004 for 2 months, and it was great! All the museums are free, cept for a few art museums which some we did pay for.

I am trying to figure what to have Dennis see. We made reservations at "Scandals of DC" that has a comedy troupe that takes you around DC and shows you various things where people made headlines.

Back to the east coast trip, I emailed Dr B, and told him we would be there before my TCI appt. He already emailed back.

I go for testing at Manhasset Diagnostic Imaging on the 1AUG, then TCI in the afternoon.

this trip is going to be fun as well, after DC, we will pick up a car, drive to Hershey PA, spend the night(two hour drive from DC) then the next day to Cooperstown NY a four hour drive. Spend the night. We are still working on the Boston part.

Supposedly, one night in BOS, then down to Great Neck for a check back, and TC screening, which I am pretty sure I will be diagnosed with based on what I know, what I have read.

Whew. I am done. My carpal tunnel is flaring up again, so I am limited on typing.

More later, HAHAHA.

My brother

My brother is mentally retarded. His words. Not totally politically correct is it.

However, these are his words.

Today I fill out an advance directive for him. I don't know. I am his sister and he is my responsibility. I love him dearly, but why must I do this?
I had to apply the DNR for my father during an episode when he was hospitalized. He died of Alzheimer's. I loved him and I love my brother.

Today I decide his fate when others won't. Words to decide a fate, a person.

I can't believe it's been this long!

I haven't posted in a long time. I need to get busy.

I have been active in www.chiaiconnectioninternational.com and moderate at the yahoo support group.

My little grand-daughter Louisa is 9 months old.

It's Father's Day tomorrow, we leave for PHX tomorrow.

I will post pictures tomorrow! I promise!

I am not well.

Been a long time!

Hi all, just an update on my family.

I have been to NY to help a friend get back to WA state. She underwent Tethered Cord sugery and was in NY all by herself. Since I am not working I can travel when I want.

Christmas was wonderful! Dennis and I visited with Matt and Shelby on Christmas Day and a visit with Dennis, Britt, and baby Louisa. She is truly amazing!

Here are some pictures of my family.

Just resting. A vent for psychiatrists that don't listen. I know Chiari is in our heads, but its not a mental disorder, it is a physical problem for which there is a treatment but no known cure. Thats why the pharmacuetical companies want nothing to do with us! Dang Earl!

Our pain isn't their pain, and it just doesn't "go away" I wish it did.

I feel blessed today.

Back to AZ, weather is kinda warm. Heck, its HOT!
Oh well, I am enjoying it. I am so glad I still have my flying benefits. I stayed with Julie for five days, very thankful for that!
Visited with Matt at the bank where he is assistant manager at WAMU downtown Seattle. I usually get lost, but this this time? I found the parking right away! Plus they validated for two hours, guess I could do my Christmas shopping downtown, eh?

My PM doc is wonderful. I told him I was having peaks and valleys in the pain department, and he upped my break-through pain meds. Doubled the amount. Crap insurance.
Dennis, my husband doesn't know if he will be home for Thanksgiving, which is also our wedding anniversary this year. And the day after is Dennis Daniel and Britts renewal of vows and Baby Lou's christening. I hope and pray he makes it back!

I go to Eugene for Cousin Alice' birthday party on the 11NOV. Flights look wide open. The cousins from Sunnyside WA are going to meet me there, and pick me up. Uncle Burt and Gwen are going to be there too.
I look forward to it.

Okay here goes I will post, I will post more

Been busy this summer, and been so many places. I need to update my life here in this blog. Things are about the same pain wise for me, but I am dealing with it.

I have attended the ASAP conference in Seattle in July and met wonderful people. I have met my fellow chiarian friends, and exchanged emails with them.

I met my relatives in Sunnyside, WA. I also met a wonderful lady who isn't chiarian, but is having surgery at TCI later this year due to her Jefferson fracture(the same as Christopher Reeve) and she is a lovely woman and her husband is wonderful as well.

I took care of my Dad's ashes in Chelan, WA a couple of weekends ago, and I am a new NANA!

See Louisa Pieta Donohoe. My son Dennis and his wife Britt are the proud parents of Louisa. She was born on September 4, 2007 and weighed in at 8lbs 5oz. Born in Kirkland , WA.

Isn't she gorgeous?