So much to catch up on

The last time I posted a blog was so long ago and so much has happened since then. I think I spoke too soon and with a positive blind fold on. I did not want to think that anything was wrong, and hoping I was healing as normaly as possible.

I went back to Colorado for my post-op visit in November. Mom went with me and it was good. I was to get an MRI at 10:30 and my Appointment with Dr.Oro was at 4:30. We had a fundraising dinner to go to that night in Aurora and Dr.Oro was the speaker so I was excited about that. I also got to see Joleen for the first time. Well, she had seen me on my birthday and I went to visit her the day after her surgery, but I don't remember either visit. She has been such a rock for me these past few months, I cannot express how greatful I am to have her in my life.

The appointment with Dr. Oro went well. The MRI was fine and everything looked good, so I was sent on my way. I went to the dinner that night, and Dr. Oro, along with several other people got to see what I am like each and every day. As the day progressed, I was in more and more pain. It was as if my head was being pulled down to the Earth with a giant magnet. It SUCKED. I also experience some incredible pain with any movement where gravity has some affect. It is like my head and neck are no longer attached. That gives me the sharpest pain, but there is the long lasting throb that goes along with it.

My mom and I were on the plane to come back to California on Wednesday and Dr. Oro's office called. They wanted a CT scan in hopes of finding out what was causing all the pain. I was already on the plane so I got the CT done the day after I got home. Guess what...????.... It was normal.

So, off to physical therapy I went. For 5 weeks, all I did was manual traction. Don't let me fool you, the traction was the BEST. It was the best I felt all day long. Anything other than pulling on my head was torture. Yes, I love the pulling. That is an indicator of Craniocervical Instability. YIKES!! I don't want that. I want to be healing normal and getting better. I want to go back to school and get my degree. That's what I want.

I guess I will just have to wait to figure out what will make me better. It has been 3 1/2 years. Another night won't hurt....well, I am sure it will hurt, but I hope it won't kill me.

Getter better every day

Today I am 8 weeks post op and getting better every day. Sometimes I cannot believe it has been that long. I started driving again which has been great.. I can get out of the house. Turning my head is still a little hard though. The pain is better, but still not gone, but I know it will be.

I leave for Colorado on Sunday for an appointment with Dr Oro on Monday including an MRI. I cannot wait to see what he has to say. I am worried about cranial instability. I get severe pain in my neck when I am laying down and move - moreso at night, so sleeping has been an issue. We shall see!!!

Windsor Jr. PeeWee going to playoffs!

The Windsor Kights Jr. PeeWee football team beat the Cal Golden Bears and made it into the playoffs!!! We are so proud of our son Austin for being a part of the team and together working hard to accomplish this.

Go Knights!

Texas, we can almost taste it

It's like the saying goes, "You can take your blood out of the South, but you can't take the South out of your blood", so in the not too distant future, we are taking it back!

Getting better!

This past week, I told Terri if she stayed down and rested enough she could go out to the kids games (cheer and football). Well she rested just enough and went. We caught the end of Channing's cheering and all of Austin's football game. Channing's team won (they shut out Healdsburg) and so did Austin's team (they shut out Healdsburg too). Terri was very ready to go home at the end and she was pretty sore that night and the next day. Macee (the little fire-cracker in the photo above) and I stayed down at end-zone for the whole game since there is no one around and she is free to get crazy and yell like she enjoys so much.

We are doing our best to keep on top of all that is going on in our lives right now like house, school, cheer and football. Terri's mom Linda has been a great help picking up Channing from school and dropping Chan and Austin off at practices. I don't know how we would do it without her help.

Terri has her flight booked for her first follow-up appointment with Dr. Oro in November. Her mother will be flying out with her and I'll be staying with the kids holding down the fort.

This weekend we play Ukiah in Ukiah on Saturday so we will get to go to church on Sunday!!! It will nice to get to see our church family who has been such a big help during these times.

Well, I hope this blog finds you happy, healthy and blessed!

Mike

Entry for September 25, 2007

Today is really hard. Yesterday I took a shower.. Yipee!! Sounds like a mundane thing to do, but let me tell you, by the time I was done, I felt like I had just run a couple of miles.. and I haven't run in many years ;)

Today, once again, I am just sitting here. Actually I am laying here. It is getting harder and harder to just sit here. I hate to have to call someone just so I can do something. I CAN walk up and down the stairs, but coming down makes me nervous, I stay downstairs all day until someone gets here to 'assist' me down. I just called my mom, who was busy, because I wanted to go to the grocery store. She put up the HUGE stop sign. No go!! Something that I use to take for granted.. going to the store, and I can't do it.

I had a thought today that I would be able to go to the store AND cook dinner for the family tonight. I am three weeks post-op. You would think I would be able to do something like that. NO chance. My mom reminded me that I still can't drive, can't go to the store alone, I can't do a lot of things... but I want to!! I know it is for the better, and so that I can heal properly and all, but geesh!! So, tonight, Mike will have to do it all once again. I know it is wearing on him so much, and I feel so bad. I sit here and I see something on the floor; a couple of weeks ago, I wouldn't have thought about it too much, but now, I want to pick it up so he doesn'thave to, and I can't.

For those of you rockers from the '80's remember Cinderella "Don't Know Whatcha Got Til it's Gone"... that sums up how I am feeling right now. I know others get depressed like this too, and they get through it, so will I.

Chiari Do's and Don'ts

DO'S & DON'TS WHEN DEALING WITH SOMEONE WITH CHIARI

DON'T ASSUME BECAUSE I LOOK WELL THAT I FEEL WELL. LOOKS CAN BE VERY
DECEIVING. MANY DAYS I LOOK GREAT, BUT I FEEL TERRIBLE.

DON'T TELL ME YOU KNOW HOW I FEEL. NO ONE KNOWS HOW ANYONE ELSE FEELS.
TWO PEOPLE WITH THE SAME DISEASE MAY FEEL TOTALLY DIFFERENT.

WE ALL HAVE VARYING THRESHOLDS OF PAIN AND PAIN CANNOT BE MEASURED.

DON'T TELL ME ABOUT YOUR AUNT GERTRUDE AND HER CHIARI AND HOW WELL SHE
MANAGED IN SPITE OF IT. I AM NOT AUNT GERTRUDE AND I AM DOING MY BEST.

DON'T TELL ME, "IT COULD BE WORSE." YES, IT COULD BE, BUT I DON'T NEED
TO BE REMINDED.

DON'T DECIDE WHAT I AM CAPABLE OF DOING. ALLOW ME TO DECIDE WHAT
ACTIVITIES I CAN PARTICIPATE IN. THERE MAY BE TIMES I MAKE THE WRONG
DECISION, AND IF I DO, I'LL KNOW IT SOON ENOUGH.

DON'T BE UPSET THAT YOU CANNOT EASE MY PROBLEMS. IT WON'T DO ANY GOOD
FOR BOTH OF US TO BE MISERABLE.

DON'T ASK ME HOW I FEEL UNLESS YOU REALLY WANT TO KNOW. YOU MAY HEAR A
LOT MORE THAN YOU ARE PREPARED TO LISTEN TO.

DON'T ASSUME BECAUSE I DID A CERTAIN ACTIVITY YESTERDAY THAT I CAN DO
IT
TODAY. CHIARI IS EVER-CHANGING.

DO LEARN EVERYTHING YOU CAN ABOUT THE DISEASE. THE MORE YOU KNOW, THE
BETTER EQUIPPED YOU WILL BE TO KNOW WHAT TO EXPECT.

DO REALIZE I AM ANGRY AND FRUSTRATED WITH THE DISEASE, NOT WITH YOU.

DO LET ME KNOW YOU ARE AVAILABLE TO HELP ME WHEN I ASK. I'LL BE
GRATEFUL.

DO OFFER ME LOTS OF HUGS AND ENCOURAGEMENT.

DO UNDERSTAND WHY I CANCEL PLANS AT THE LAST MINUTE. I NEVER KNOW FROM
ONE DAY TO THE NEXT HOW I WILL FEEL.CHIARI IS LIKE THAT.

DO CONTINUE TO INVITE ME TO ALL THE ACTIVITIES. JUST BECAUSE I AM NOT
ABLE TO BIKE RIDE ALONG WITH THE GANG DOES NOT MEAN I CAN'T MEET YOU
FOR
THE PICNIC AT THE END OF THE TRAIL. PLEASE LET ME DECIDE

AUTHOR UNKNOWN