Monday, August 24, 2009


Dont mind my grammer or spelling it was just for me :) i shared this at my 20yr class reunion sat night!

good evening fellow classmates,

let me start by saying I just might cry and my disease effects my speech causing me to run out of breath, yawn, crack and slur! So be patient with me please!

My name is Tippi many of you know me and many of you don’t. When Dackeyia first asked me to share I thought omgosh im really going back to highschool! I have to give a oral report!!!

However after I thought about it I thought it was a great opportunity to share my very rare disease and the importance of organ donation.

I have a inherited progressive disease that I was born with called Friedreich's ataxia (FA for short ). Most people come down with symptoms 9-15 years of age.
I was 27 when I first noticed things were not quit right .At the age of 31 I had a heart attack and finally after 7 years of going to the Dr. I got diagnosed with the FA at age 34. I knew I was not crazy!!!! its basically a muscle wasting disease effecting ever single muscle in your body.

the say my heart condition is secondary to the FA. I lived with a bad heart until I was 37 with the help of medication. Finally the medication did not work no longer and I started to go downhill.

my Vallejo kaiser Dr. referred me to heart transplant in santa Clara. When I very first had my appointment I left feeling like I would never get a heart.

My weight was to high and the neuro disease. Well I was not happy and was not gonna go down w/o a fight. I lost 57 lbs and started emailing FA Dr. around the globe!!! I got letters from DR's, literature whatever I could get to educate kaiser and Stanford to even approve me for the list.

I got approved!!!!!!!!!!!! and waited 5 longggggggggggggg months at home. Never got the call. Finally Aug last year I got admitted to kaiser santa Clara to live and wait for a heart.

That was very very hard my son was going to be a senior and my baby girl was starting middle school. I was not home for any of that my husband Scott had to do it all.

I am very blessed to have such a good man in my life he takes the best care of me along with our two children.

I did not know if it was gonna be weeks or months waiting!! one man waited 12 hours another 1 year!

The Dr. came in 15 days later while I was on the phone with my daughter and asked me if I wanted to take a ride? I said ok where? she said Stanford!!!!!!!!!!!!!!!!!!

!! Brianna heard everything and started yelling saying dad,dad mom is going to Stanford, they got a heart!!!!!!

To make it short I got the heart and then had to live in santa Clara for a month before I could come home.
Finally October 9th Scott came and took me home!!!!!!!!!!!!!!! wow it had been 2 months I was gone..

its gonna be a year in 6 days since my surgery. Also just to inform you. I am the very first FA patient in the united states to get a heart transplant.

my main message to you thru all of this is please, please donate your organs or families if ever put in the spot to make that decision. God has a
plan for the 1 dying and they could save someone else. 1 person can save up to 50 people!

BTW I have met my donor mom and we keep in touch and its been good healing 4 her.

I have a 28 yr old heart and not a day goes by I don’t think of Angelina or her mother for making decision to donate her organs.

also go out there and make those special memories and like my heart transplant friend deb says make moments that take your breath away. Don’t put anything off until tomorrow, a walk on beach or a visit to friends or family. We don’t know if there will be a tomorrow!!
As my husband always tells me live for today tomorrow is another day. I know easier said than done trust me I know but its still encouraging words to live by.

Thank you
for listening and being patient with me.

class of 89 rocks!!!!!

Tuesday, August 18, 2009

Where to begin?

I am a horrible blogger!!!!!!!!!!!
I dont even know where to start! hehehe

Busy with softball softball and more softball. Now its over and we won 1st place two weekends in a row! Now its soccer time and she is trying out for a new fall ball softball team!

School starts tomorrow and my baby is going in 7th grade! wow wee how did that happen?

Rob passed his test, signed and is officially enlisted in the United States Airforce! He leaves in January.

I go to my first annual heart check up on Sept 1 and 2. Hope it all is good. Will keep ya posted on that.

I am going to my 20yr class reunion on Saturday and I was asked to share!! I am not a public speaker and do not do well but I am going to try so i can promote organ donation!!
Pray 4 me that I can do it with out freezing or crying like a baby!

umm I am sad summer is coming to a end. It is my favorite time of the year. Plus my body does better in the heat. Winter cold makes my body ache!! grrr

I have a little more I can share but I will save it for next time hehe

Until then God bless

Friday, July 3, 2009

Happy 4th

Wow its been a long time!!

We are going to Hidden Valley lake for the 4th. We are going to my aunt Sharons best friend house. We have been doing that the last 4 years or so. I love the Lake and Bri loves to go there also.

If we have time I plan on visiting Deb at her trailor as its not to far!

Bri softball team won 2nd last weekend. Wooooooooooo the weekend before that was horrible!!

I have been feeling good and no complaints, other than my walking stinks! I guess I just gotta deal with that.

Scott finally home getting ready for the weekend so have a happy and safe 4th


Thursday, June 18, 2009

victoria case #4

Here is my 4th challenge its so fun to use the images I keep coloring hehe
Click here to find the sketch and details!

Wednesday, June 17, 2009

victoria challenge #3

This is my challenge this week you can go to the website here for the sketch and info!

Friday, June 12, 2009


Wow im happy and sad that my baby boy graduated h/s!!!!!!!!!!!!!


Here is some pics!

Saturday, June 6, 2009

mojo challenge

This is a card i did for Mojo Monday's card challenge.
You can find the sketch here and all the info :)

Friday, June 5, 2009

victoria case challenge

Here is the card I made for the challenge. It had to be white,black and pink. Hope you like it :)

Click here to go to the website

Tuesday, June 2, 2009


I am happy to say my cold is finally going away!!!!!!!!!!!!!!!!! Just got a lil cough but nose is clear and no more snotty hehehe

Nothing new going on and nothing too really share. Just that i am finally starting to feel better.

Oh im starting a new diet tomorrow!!! Hope it works lol
I need to do something!!!

Have a good evening :)

Sunday, May 31, 2009

memorial weekend

Well we came in 1st place again in our division?? Lots of teams so there was division brackets. I decided to come down with a cold last Friday while gone at softball tourney!!
It has now been 9 days and it wont go away!!!!!!!!!!!!!!!!!

Well its a little sad to say but we are leaving the softball team for another one. Right now we are on under12A travel ball team. She can not go to under12B team so we went to a under 14B. They need a pitcher and Bri is a pitcher!! She has not got a chance to pitch on her 12A team because its a better team she is young one and not as big and strong as a couple girls.
She wants to pitch!!! and we want to see her pitch!!!!!!!! This is the main reason.

Well i better go get ready as she has practice in less than 2 hours.
have a good Sunday!


Friday, May 22, 2009


1st attemp crayon resist

water bottle holder

post it note pad

Cd/dvd holder

copic 1st attempt

copics 1st attempt

book of me

Book of me

Book of me

Book of me

Book of me

book of me

Book of me
Book of me

Book of me

book of me

A book of me

6x6 book i started of just Bri and I when I was on heart list just in case I did not make it and she had to always remeber us!




Wednesday, May 20, 2009


First 1place Go Lady Hawks!

Rob and Janet prom 2009

Kris?? Are you serious!!!!!!!!!!!!!!!!!

Well guess what? Bri's softball team came in 1st Place this past weekend in Fremont!!
Saturday they did so bad and then sunday they kicked butt and won all 4 games to take 1st! Saturdays just place you for sundays then on sundays you play until you lose.

She also had a Soccer practice game and they won 2-1. Bri scored both goals :)
Go my lil sport girl :) The whole team is good but she is a forward and gets all the glory, however we know soccer is def. not a 1 man sport!! She is not the fastest but has a good kick and great ball control!

I really need to take some pictures of stuff I made. Maybe tomorrow!

That shot I got last wed. ohhhhhhhhhhhh man has helped soooo much!! I have no knee pain right now. I hope it last a while!!

Let me see if i CAN FIND A PIC OF rOB AT PROM. iT WILL PROBABLY POST THE PICTURE first again. (opps caps) hehehe

If no pic I will do it!!!


Wednesday, May 13, 2009

What's new?

Well lets see what is new? lol

Bri just won 1st place at her very last city wrestle tourney at school!!! Go Bri hehe

Scott has been sick off/on for two weeks now and it does not make any since. I just know I am gonna get sick!!!!!!!!! I dont need anymore

I just went to dr today to see why this joint/knee pain. The plan for now is she gave me a shot in knee, x-rays of knee and finger, referral to pt for knee!! Go back in 3 weeks to see if shot or pt helped, oh and lots labs. No prednisone yet (last resort)

Rob grads in less than a month!!! Wow wee where did the time go?

My heart has been ok and I dont go back until June 9th for a appt. Hope that continues to go well.

I think we go to Fremont this weekend for softball, not totally sure. I am ready as we had the last two weeks off and I want out of house and in sun!

I really need to post some pics!! Got Rob at his prom too!! I am such a procrasinator and have no excuse hehehe not like im not on pc all day LOL

Getting ready 4 idol. Go Adam!!!!!!!!!!!!!!! I like Danny too but Adam is amazing!!

Until next time :)

Tuesday, April 28, 2009


oh man I am a lagger!! I still peck on this stupid keyboard that is why!

So Brianna's team came in 2nd place in Sac!! Then we went to Fresno this passed weekend and they did not do so hot!

She now started Soccer as well as Softball!!!!!!!! Oh man its busy around here with the sports!! however I love watching her :)

She likes both sports and does well at both so its hard for her to pick a favorite.

I am still aching really bad and trying to adjust med's to find the perfect mix. Other than that I feel pretty good. I fell on my butt on the cement, ouch!!!!!!!!!!!!! It still hurts and its been 5 days.

Got to run, chiro appt time!! I told ya the evenings are crazy busy!

Saturday, April 18, 2009

the weekend

Finally the weekend has arrived and its gonna be a nice (weather) one.

My last check up was Tuesday and I had no biopsy, just blood work (allomap). It checks for rejection as well. My allomap came back like it always is. That means I just go for another checkup in June and do a dsa blood test. If all well then no more biopsy for a year!! (my neck can use the break).

Bri has a softball torney in Sacramento but the first game is at 2:30. Wow late, never had this late of a bracket. Last game starts at 7:30! So we will get home late and have to be back at 7 a.m. lolol

Scott just went to kaiser! He got bit by something in his sleep Thursday night and now this morning hurts really bad and a red line going up arm!! Sign of infection!! Good thing we have a late start with ball. Only 9 girls gonna be there, no subs! Which is fine with me as my daughter is one of the subs!! lol

I have been scrapping my butt off hehe I know I need to take pics. Some really cute layouts to :)

Let ya know how the girls do

Have a good weekend

Saturday, April 11, 2009


Jesus is the reason!!!!!!!!!!!!!
Happy Easter


Monday, April 6, 2009

Donor's mother

Well Saturday my mom and dad took me to Hayward to the Ca donor network function and I got to attend that and meet my donors mother and her grandmother. She brought all kinds of pictures for me to look at, then we sat together for the function and then Juanita and Esther joined us for lunch at the Olive Garden.

My mom loved her mom Esther right away. She just liked her personality.

The gathering was to honor everyone who donated organs in 2008. It was a bit sad as most everyone of course who donates is very young :( Some babys too.
I got a nice book with photos etc. of everyone that donated in 2008 to remember them always. It was a special and i am sure emotional day for the families.

Juanita brought a t-shirt for me in rememberance of Angelina and her and my parents thought we sorta looked a like.

After my mom and dad took me to stockton to the hotel Scott and Bri were at for her softball tourney. I got to see them play Sunday and they did very well :)
One game away from the champ. game!

So I had a busy weekend and all went well :)

Until next time

Friday, April 3, 2009

Donor mom

I am going to meet my donor (Angelina's) mother tomorrow! My mom and Dad will take me as Scott will take Bri to a softball tourney.

I will post some pics of us and Angelina later!

Have a great weekend and tell ya about visit later.


Monday, March 30, 2009

cant sleep

I cant sleep so figured I would update. I had a heart biopsy on Tue 24th and no rejection!! All good

Waiting to hear if DSA came back negative although I am not worrieed about it.

Bri had softball tourney this weekend and hit a triple last night then turn around and did it again today! She has been in a slump and hope her confidence is back.

If my knees and legs were not hurting so bad I would be feeling great!

I have just been crafting as usual and the kids were home last week and again this week. Unlike most parents I like when they are home :) Then I am not as lonely.

I got my hair straightend and I love it, so much easier. I wash it today and still straight. I was scared hehe I like waking up and not having a afro!!

Both kids got a goods report card. Bri was sooo close to straight A's.......Rob is happy with B's. He could do better but dont try. Bri has report and its done week ahead of time, where as Rob is doing the night before!

My Dudley is sooooooooooo happy and loves his papa to death! I am so happy for him and I love not having any dogs. We are to busy to have a dog.

My heart transplant team is referring me to see Dr Perlman (fa) dr in southern ca ucla. I cant wait! She is an ataxia specialist.

I cant think of anything else I need to report so if I remember anything I will share it next time.

Love all

Thursday, March 19, 2009

Been a while

Easter pull treats

random types of bookmarkers

Bee card

Easter cards

Well its been a week or so since I last posted.

I get off prednisone Saturday woooo

Started a new b/p and I think its helping.

I go in Friday to get a event monitor that I have to wear for a month to make sure heart is ok. I am sure the passing out episode was from the med's.

I have been feeling pretty good the last couple weeks and got some things made. I will post some pictures. That is funny it posted my pictures first and not last hmmmmmmmmmmmmmm oh well :)
Its almost Friday!!!!!!!!!!!!! Have a great weekend

Wednesday, March 11, 2009

Friedreich"s ataxia

Go watch this video

Friday, March 6, 2009

feeling better

Finally feeling better!!!!!!!!!

Just trying to adjust med's to get head back to normal. Started 5 mg prednisone today and stay here until further notice.

Gained a little but not as much as I thought. The prednisone made me retain some fluid and face of course but ankles also puffy.. I been on lasiz for 3 days now and almost gone! Wooooooooooooo

Went to the neurologist yesterday and he said there really has been no change since last visit a year n half ago. ( That is a good thing) SLOW

I am finally cleaning my room today so I can scrap!!! Its been so long since I have felt good to make a HUGE paper mess hehe

Dudley is doing sooooooooooooooooo good with my mom and dad, I am so happy for the little snot!

Bri softball team did really good at there 1st tourney! She is on a pretty good team.

Glad its Friday and maybe I can post a pic of a new something I made hehe

Have a good weekend!

Friday, February 27, 2009


I have been in my room for days!!!!!!!!!!!!!!!! Iwant out of jail but at the same time this dizzy wont go away.

They are changing my meds today so I hope this helps.

Bri has a softball tourn this weekend in salinas. Hope it dont rain out there, we are leaving early in the morning.

Tonight Scott will drop me off at the Front Room and I will meet all the ladys I used to work with at the college! That will be nice, I have not seen any of them in at least a year!!

That is about all that is new. I have not scrapped as I been laying more than sitting grrrrrrrrrrrrrrr hope to start again!!! I miss my hobby (addiction) hehe

Love all Tip

Wednesday, February 25, 2009

no more rejection!!

I am back to what I usually am. 1a/1r which is not NER (no evidence of rejection) but they are totally happy with a 1.

Now I just need to get off this high dose prednisone. I passed out yeterday in x-ray (so dizzy) grrrrrrrrrrrrrrr

but I am alive!!!!!!!! wooooooooooooooo hehehe

Sunday, February 22, 2009


Omgosh all I want is food!!!!!!!!!!!!!!!!!!!!!! I am already up 18lbs and now this high prednisone I want more food.

I started oral prednisone yesterday. I have been up since 5:30 but I did not want to take ambein to see if for one that is causing dizzy and for two Bri was supposed to have a friendly softball but it got rained out.

I dont feel bad except for the high dose med's. They are icky!!

Go tue for another heart biopsy and will know wed if all the massive drugs knocked out rejection! I am not gonna stress unless it dont.

Ok I need to find food grrrrrrrrrrrrrrrrrrrrr this is worse than in the begining!!!!!!

Saturday, February 21, 2009

This is how her hair looks most days because she is lazy!!!!!!!!!!!!!!
Will update on me later!

Snuck one of Rob!

Thursday, February 19, 2009


I had my biopsy this last tue the 17th and got a call yesterday morning that I had to go do IV infusion of 1000mg of some drug that is like prednisone, for 3 days in row.
Then starting Sat i go on heavy pill form prednisone with a taper.

Had 1st infusion yesterday and not sure if I even slept!!!!!!! grrrrrrrrrrrrrrr

I go back next tue 24th for another biopsy and hope the drugs knock it out!

I have some pic I will post later of Bri playing w my make-up she is so beautiful :)

Ok I got a new keyboard that I need to get used to, that is why lag on update, its hard to type lol

Monday, February 9, 2009

The latest

I need to make something other than cards!!!! I got them coming out of EVERYWHERE!!

My B-day dinner was very good. My mom and dad came and took us all out for dinner and was very nice.

I texted Juanita ( my donor mom) and tell her it was my b-day and thanked her for her decsion to make it possible for me to see another.
We plan to meet in April.

I have not went to labs lately as white blood cell count was good last time so I will just wait for Feb 17th when I go for next heart biopsy. I have a feeling my cylosporne (spell) is high as I am a bit shakey! ( Well more than usual )

Bri softball team just had there first lil friendly double header and won both games, so that was good.

I am hoping Debbie is well enough to pick me up tomorrow to take me with her to Santa Clara Kaiser for our once a month heart transplant meeting.
I have not been in 2 months! Scott is already taking time off work as it is to bring me to biopsy's so when that is not once a month then he can start going to support with me as well. ( i dont drive freeway) noooooooooooooo way.

I have been very frustrated lately. The heart surgery went well and my heart has been all good so far, but my FA is sooooooooooo much worse.
I am barely walking now a days and my legs ache all the time!!! Weight loss has been so hard not able to excerise ( i want to but then after a few days I am down for two).

My mom and dad took Dudley our pug who is 5 year old and never potty trained.
After we had to put Jess down, he is all alone now and I am the only one here all day long and I cant give him what he needs. They are willing to give him a shot to keep him in family or I am either going to ship him to my sis or give him over to pug rescue.
I really hope he gets it!!!

Well I guess that is it for now so until next time, BE SAFE

Wednesday, February 4, 2009


She just got her hair cut and I love it when its done!! So beautiful!!!!!!!!!!!!!
This is my goal, to grow out my hair just like her's :)

Tuesday, February 3, 2009

That is just some stuff I made over the last couple days.
I did not win the football pool :( if that first steeler touchdown were to count I would have had 50.00 that quater!!
Well some good news. I have been having very low white blood cell count for a while now. I think we finally figured out it was the Idebenone I take for FA.
The drug family helped me get a couple years ago. I still take it 2 years later and now im cutting dose in half and cell count is now 5.0 which is lower but low end of normal!! That is a good thing!
Besides that and what I have been making that is about all the new stuff I got to share :) until next time!!!

Saturday, January 31, 2009

I made more

Those are so fun to make. The best thing is its made out of scraps!!
I am working on 4 more now :)

We just got home from the grocery store. We got food and stuff for superbowl.
Its just gonna be us at home no biggie!

Today was beautiful outside. We took dudley aka pee pee boy hehe to the dog park. I enjoy seeing all the different breed dogs. Plus it got me out of this jail for a while!!

Tomorrow we get up early and go to pitching lessons for Bri then we are stopping at the park on the way home and Scott will hit her some infield. Got to take advantage of these nice days.

Then its superbowl time. I hope I win the pool hehe that is the fun part of the whole thing!

Have a good sunday and be safe tomorrow if you go out!!

Thursday, January 29, 2009

Todays scrapping

Well I finally got in gear and made a little something. I have not decroated the tags inside yet as if I leave blank for now then I can chose the occasion later as I need it. This can be used for anything. B-day card, Valentine card and treats inside or gift card holder. Let the imagination roll!!
Gonna make some more it was fun and easy!