Showing posts with label Memories. Show all posts
Showing posts with label Memories. Show all posts

Monday, September 10, 2012

A Beautiful Angel....



My sweet T earned her wings August 28, 2012 It was a sad day here but I know Tiff had a welcome to heaven party for her. I can only imagine the shenanigans they are getting into up there. Tiff, Tanya and I.... The 3 Musketeers is what the hospital staff started calling us. From all our late night Starbucks visits, to mastering the Wii while still staying 3 ft apart, the late night talks, well the list goes on and on. I am grateful for so many great memories I share with them... my musketeers.

T and I at starbucks of course :)

So Sept 1 Amanda, Ron and I headed to Idaho for T's funeral. Amanda spoke and did such an amazing job. Her talk was perfect and I know T was smiling down at her...




Amanda's words for T

Tanya Lynn Taylor Downs was born on 7/11/83 (In case she hasn’t told you they give free slurpees away for her birthday.
  Tanya came into my life as a patient and left me as a best friend.  For those of us fortunate enough to know Tanya she had that effect on people.
  I met Tanya in 2006.  I had just moved to Utah from Nevada and had only been a nurse for one year.  I started working at the University of Utah Hospital on 2 East, which many of you know became T’s home away from home.  When I was given the job my manager was explaining to me the different types of patients on the unit and while explaining it to me she said CFers.  I had no idea what CF was.  Working with all the other nurses on the floor they would tell me our CF patients mean a lot to us and they know more about their disease then we ever will.  They explained to me how they have been in and out of the hospital most of their lives.  The nurses would tell me how they are very particular with their care and often request certain nurses.  They said don’t be offended if you notice some of us having more CF patients then others.  
  Then one morning I get to work and on my assignment was Tanya Taylor I will never forget she was in room 239.  I walked in so nervous just to see her happy smiling face watching a movie with Jackie.  Tanya was getting to go home that day so I had to de access her port.  (Port a caths were permanent catheter used for their IV access, they were also know as thipples “Third nipples” by Somer and Tanya).  I get her ready to go thought I did well and then realized I had forgotten to put heparin in her port. (Heparin is what keeps it from clotting).  I thought oh crap. I screwed up my first CF patient.  I am calling her frantically on her cell phone and she answers as she is pulling out of the parking garage and I told her what happened.  She said oh I will be right up, she came up to the floor and let me repoke her, and I will never forget what she said, you are a really good nurse and I liked having you even if it was only for a day.  That is the type of person Tanya was she found the good in everyone.  From then on out I was always T’s nurse.
  Tanya had to spend many holidays in what’s known as the joint.  Whether it is Thanksgiving, Halloween or her Birthday she was always ready to celebrate.
  Tanya had CF, CF did not have Tanya.  Right before her transplant she was in the hospital a lot, but she would always have fun.  With Tanya came great friends and family.  Tanya always had someone with her and I will never forget one night she said she was going for “a walk” little did we know that she had a get away car outside waiting to take her to the Moon. (No I don’t mean space I mean the bar).  Starbucks was a big hangout and thank God the one at the U was 24 hours you never knew when Tanya would need a starbucks run.  If everyone wanted to go down together and a doctor was around I would be directing and sneaking Somer, Tiff and Tanya to get away each taking a turn down the elevator (because there is a rule where CF patients have to be 3 feet away from each other).  You would walk by Somers or Tanya’s room and they would have the WII set up perfectly 3 feet apart.
  I know as soon as she saw Tiffany they gave each other a never-ending hug.  We will always have a sweet angel watching over us, but she is with one of her partners in crime so they will be watching us with their newly empowered angelic beings with a touch of teasing and joking too.
  I have to share two remember when’s.  No matter when I would talk To Tanya whether it be a day or a week she would always say remember when.  The first was when Tanya was staying at my house her and I were eating at Taco Bell and across the parking lot was a Hollywood Video, as we were eating I said hey do you want to hear something funny.  I have a 150-200 dollar late fees there (I know who has that much money in late fees at Hollywood Video) after she quit laughing she said lets go take care of this.  This was pre transplant and Tanya walks in with her oxygen and said I am Amanda Hankins I am not paying my fees cant you see I am sick, the lady at the counter said oh maam I am so sorry I will take care of that.  Thank you T.
  The second remember when was when my husband would bring my son Brenden up to see Tanya every Sunday.  Brenden did that about every Sunday she was in the hospital for his first 8 months of life.  He would just lay on her bed with her and as he was getting older he would mimic her cough.  Tanya would cough then Brenden would cough.  Then T got her lungs and once she was up and able to talk she said you know what I am going to miss Brenden's cough, since I won’t cough anymore neither will he.  That was Tanya always finding the humor in everything.
  Lets talk Ambiem the 2-east sleeping pill, which Tanya would often entertain us on.  If you have seen the commercial you know the side effects: People using this medication have engaged in activities such as driving, eating, and making phone calls and later have no memory of the activity.  Well I can say she didn’t drive but she did do all others.  Many of us out her probably got the infamous text of her combing Avril Lavanges hair; cats were coming out of the walls. Oh Tanya how you always made us laugh.
  I was blessed to get to be with her friends and family waiting for her while she got her lungs.  She was so brave and I have said this many times Tanya I aspire to be half as brave as you.  Tanya loved Reba McIntyre and I remember after she had gotten her lungs but was still sleeping a lot Reba had called her cell phone and left a message.  Oh my goodness she must have made me listen to it 100x. I took a quote Tanya had on her facebook. She was so grateful for her donor.  The quote says “There is no greater love then this.  There is no greater gift that can ever be given.  To be willing to give up your organs, so another might live.  There is no greater love then this.”
  Tanya you taught me so much.  You taught me to love when things are hard, you taught me to smile regardless of the fight we are fighting, you taught me to walk on.
  Tanya I will miss you everyday.  I will miss you and your dogs having a sleep over at my house, I will miss are dinner dates, I will miss your laugh and your “oh hells” the phone calls and the texts, but I know you are with us each day taking deep breaths and smiling.
  Tanya I would like to tell you to rest in peace, but don’t’ rest it is your time to run, dance, laugh, and breathe.


The photo above was when we were at her graveside T didn't have her Love to Breathe necklace on and Tiff and Astra both had theirs. On top of her casket were 65 beautiful roses and Amanda took her necklace off and placed on the roses so now T can have her Love to Breathe necklace with her forever too.

Breathe Easy T! You Lived, You Loved, and now you can Breathe!!! Xo infinity your musketeer

Sunday, September 9, 2012

Roomies 4 Life!

I can't believe it's been 15 years since we all shared a dorm/apartment together. So many fun, crazy, silly, awesome memories from that year. We are bonded for life!!

We all tried to get together this summer when everyone was in town but life is crazy. I'm glad some of us were able to still meet up. Love these girls!!

Saturday, September 8, 2012

The Perfect Day

August 10, 2012 I drove up to Logan with my friends Amanda and Ron to see Tanya get married. It was a beautiful day and she was a beautiful bride and she was so happy she glowed.

It was probably the happiest/saddest wedding I had been to. I am so glad that Tanya was able to have her special day with Jake it meant so much to her to be able to walk down that aisle.



Amanda, T and I 

Cysters... Stephany, T and I

The Happy couple and their first dance Jake picked her up for this one she was getting tired. 

Tanya teasing Jake with the cake

Friday, July 9, 2010

LOVE is a BATTLEfield





One of my besties Erika Michelle Maymi married Stanley Mac Battle 6~20~10 on Father's Day!

The wedding was beautiful definitely the wedding of 2010...

I was honored to be there the first day they met and was honored to stand up and be a part of the bridal party at their wedding. Erika was breath taking and in true Maymi form it was an unforgettable blast filled with so many memories to last a life time.

Love ya DIK! Xo


All the wedding peeps

Mariel and I ( Mariel is Erikas older sister aka the MOH maid of honor)

My mom and John and My Dad and I

The BLONDES of the bridal party Tangee on the R came all the way from the land of OZ

Striking a pose

Me and the Couple of the YEAR!
THE MOST AMAZING PARENTS!

So you can see Erikas dress in full... So pretty!

Ricki's Parents My mom and John and Dad

My friend Erinn and I (This pic is VERY Thipplicious)
And it wouldn't be a Maymi function without a performance... During Mariels MOH speech which she killed BTW Amazing Job Mariel!!! The Maymi's had a lil something something planned.


Friday, January 22, 2010

Flashback Friday


Ok here is a lil glimpse of when I was 15/16... Madonna would be SO proud ;)

Thursday, March 5, 2009

So Fancy!!

Ok sorry I have been MIA but I have been busy being busy.... :)

Ok Utah is getting the most fanciest Nordstrom store ever!! It is beautiful! I went to the private party on Tues night to check it out and I felt like I was in Vegas Milan. It was BEAUTIFUL! I am going bright and early tomorrow when the doors open I can't wait. I have always wanted to open a new store it will be weird being on the customer side of things it was bitter sweet on Tues. However, I did get to partake in the food and beverages and working there that wasn't an option. 

The fancy party...
My SIL and I (LOVE HER) and in the background the fancy store...



My new fabulous purchase from the kids dept! Love glasses!!! I love them I wore them all day and it wasn't even sunny :) Not to mention they are a great prop for photobooth!!

Today I went to the cutest lil cupcake shop called Divas with my friend Amanda. Its crazy I went to CF camp with her and get this believe it or not she was mis diagnosed she ended up not having CF, but horrible asthma. They still let her continue to go to camp since she was so close to so many of us. We got reconnected a couple years ago and have kept trying to get together when she comes up to SLC she came to Taste last year but we have been trying to do coffee or lunch so today it finally worked out and I am so glad!

Here is a pic of us at camp... I am in all red and Amanda has the white sweater on with red pants. The other 2 girls Marie and Michelle fought their fight with CF and they both were given their wings... 

Friday, February 27, 2009

Can't Stomach it

When I was 15 I had to gain some major weight my mom made a deal with me that if I gained 10 lbs by my next appt, she would let me get my belly button pierced. Well I can't even tell you how many cans of ensure I drank in that month. I upped my enzymes and took them with every can. I split them up and took some before, during and after each can. To this day I still have my belly button pierced. But that month ruined me for any type of meal replacement drinks on the market, they all make me gag a bit. 

I am so ruined that if a dessert tastes a bit like the choc, vanilla, or strawberry drinks I can't eat it. Just recently however I can get a USANA Nutrimeal down... I drank the chocolate, it is a powder and I only added water and it wasn't bad considering I don't like chocolate. It tasted like a Wendy's frosty. I can only imagine what it would taste like if I doctered it up a bit.



Thursday, February 26, 2009

"My CF About Me"


Ok so I have been loving reading these and getting to know so much more about my Cysters. So after much consideration I thought I would put together one myself. I didn't think it would be that long but it has turned out to be quite a novel.

~I was diagnosed with CF when I was 11 months old on a hunch. My mom read a newspaper article that said “kiss your baby disease” If your child tastes salty get them in for a sweat test to see if they have CF. So she licked my bro and I and I guess I tasted salty.  She called my pediatrician and told him she wanted me to come in for a sweat test. He assured her I didn’t have it, I was a very chunky baby and there is no CF in my family history. But she insisted and so he did it and called her the next day crying. The docs told my parents I wouldn’t live to be 10 and from that moment on my two fabulous parents chose to fight my disease and when I was old enough I joined the fight.  Look at those cheeks :)

~My parents started the CF Chapter here in SLC after my diagnosis and I was a poster child for many years and attended many functions in the community to help raise money for a Cure. You can read more of my story and see photos of these events at www.lovetobreathe.com a web site that my bro put together for me.
 ~ I was first hospitalized when I was 7 and I didn’t start enzymes until then either. This is a pic of me in the joint for the first time

~ My lil bro was adopted. My parents always wanted 3 kids but they didn’t want to chance having another Cfer. The pic below is the day we got Shelby

~I went to CF camp when I was younger for only 2 or 3 years my mom didn’t think it was very sanitary (smart lady) However I met some amazing people and we have lasting friendships.
~After my first hospital stay I began to do Ivs at home once a year until I was 10 then I started going into the hospital for a yearly tune up. I would usually go in around Christmas break so I wouldn’t miss much of school since not everyone knew I had CF growing up. When I graduated high school I started to talk more openly about CF. When I was growing up I just didn’t want people being sympathetic and never wanted to be the “sick girl” To this day when someone gives me The head tilt, you know the one it is just a lil irritating. 
~I danced growing up and was in a performing company we traveled many places to perform including Japan. I did ballet, tap, jazz, hip hop, and modern. I stopped dancing with my dance company my senior year in high school so I could be a cheerleader.
~I went to private school all my life so when I went to college for my first year it was hard to be a # rather than Somer. The college was 2 hours away from my home. I moved back after the first year and continued my career at Nordstrom and worked my way to management. I managed Kids shoes, Jewelry and Savvy.
~ Went to Primary Childrens Hospital until I was 22 I was the oldest patient then I finally transitioned to the University of Utah the Adult CF Center.
~Every time I go into the joint My mom chooses a theme and gets decorations and my parents decorate my room for me. It’s a different theme every time. Unless I am in around a holiday it is decorated from floor to ceiling you can see some pics on my website. The two below were from last March. I took my tap shoes to the joint, they made pulmonary rehab more fun :)


~I had a hard time with piccs year after year and finally after forming blood clots in my arms and being on coumadin on 2 different occasions. I got my “Thipple” in 2005. Many of you may know that as a port but I call it my “Thipple” for third nipple. I SO wish I would of gotten it sooner but it seemed so permanent. I flush it once a month and don't mind it at all. When I first got it I was a lil self cautious about it. I have had many people say some interesting things about it. Once when I first got it I was in Vegas with some girlfriends and I wore a low shirt so it was clearly showing it was my first time with a thipplicious shirt on and my friends assured me you could hardly see it. So we went downstairs and I noticed we forgot the camera so I opted to go get it and I was in the elevator with 4 guys all of a sudden I hear a guy scream "OMG what the hell is that" I was mortified right when I was about to answer the doors opened to my floor so I replied back "thats what happens when you go to a third world country and get a boob job" and I kept walking I didn't even look back. I told my friends they were liars :)
~I went to a chiropractor in 2005 and they found a kidney stone the size of a large gumball by accident. I had to have surgery to remove some of it and break the rest up so I could pass it thru a stent I never felt a thing not even passing the rest of the stones.
~I stopped working at Nordstrom in Dec of 2005 after continuing to get really sick. I was admitted when my FEV1 hit 22.
~ I am very involved in the CF community and try to raise awareness whenever I can. I sit on the Heroes of Hope Panel a fabulous program by Genentech (makers of Pulmozyme) I sit on the board of directors with my local chapter and I send my paintings to different fundraisers around the US. I was in the TOBI calendar for 2008 and helped the Boomer Esiason Foundation out with a campaign with Jiffy Lube last year.
~When my bro got prego with Makena Tammy had to be tested to see if she was a carrier and she was not. However my bros blood test came back showing 2 negative genes (which would mean you have CF) So they actually wanted him to go up to Primarys and get another sweat test it came back negative so it turns out one of his negative genes is mutated so with that mutated gene it makes him only a only a carrier. So my doc thinks I may have 3 or more CF genes. Which is very rare! The pic below is Shane getting his sweat test a lil over 3 years ago

~ 2006 I was in the joint 5 times 2007 6 times and  2008 twice all for 2-3 weeks at a time. I am happy to report the last time I was admitted was March 3 2008 almost one year ago. I am not sure I remember the last time I was out for a whole year. In April 08 I started back up on USANA and also got on the aztreonam early access study.
~ The meds I am on are albuterol (3 times a day) ,pulmozyme (twice a day),Tobi, (every other month)Aztreonam (on my off tobi months), Pulmicor 1mg (In the am)advair (twice a day),pancrease MT 16 4-5 with meals 0-3 depending on the snack azythromiacin (daily) Nexium (in the am) AllegraD (in the am) Vitamin C 500mg (3 times a day) USANA(proflavonal 90, hepasil, coquene 30, Essentials) am and pm) nasalcort (twice a day) During flu and cold season I drink 1 to 2 emergen c’s a day I also drink apple cider vinegar and I have a nose and throat spray that I use pretty regularly they are made by Seagate and I get them at the health store. I drink wheat grass when I can and just try to have a healthy diet. The last oral glucose tolerence test after I drank that drink my blood sugars were in the 40s so they said I was hypoglycemic which I guess is borderline CFRD not sure that whole thing is confusing to me. My airway clearance consists of somergenics J a mix of auto genic and other breathing techniques and I use the pep mask 3 times a day I got it after last March and I love IT! I thought why would I use that it is so 10 years ago but I really love it!!! I wear o2 at night and when I work out. I work out on the treadmill and I walk my dogs when its nice. I just started the Tracy Anderson Method and I love it she is Madonnas trainer! Well I think that about wraps it up for my health regime.
I have the old vest but I rarely use it I prefer pounding which I only have done when I am in the joint...

My daily cocktail

~My Last BLOW (PFT) was on Mon My FEV1 was 34 and I am hoping that I will hit a 40 after the next time I receive IV antibiotics. I keep visualizing it.
 ~ I have been blogging for almost a year now I started at the end of March. I am so thankful I did, I have been reconnected with some fabulous friends and I have found some amazing Cysters. The bond I have with my Cysters I tell ya it is something I can’t quite describe! I have two brothers and I think I know now why I never had any sisters.
~If I could change one thing in my life.... I would opt to NOT change a single thing! I believe I was given this life because I am strong enough to live it! I am SO VERY blessed to have such an AMAZING support system my family and friends mean the world to me!!!!!!

So there you have it my CF About Me I am sure I have left some things out but this is what sticks out in my mind. CF is just ONE of the MANY things that makes me who I am and for that I am grateful!

Tuesday, February 24, 2009

Get the popcorn ready...

Set your tivos.... Ricki Noel Lander will be making a guest appearance on Access Hollywood tomorrow night Feb 25th (thanks Christy) check your local listings for times... 

Here's a pic of Rick and I.... I think we were in 7th grade( She surprised me for my Bday with a photoshoot) its funny we still like to dress alike  :)

Sunday, February 22, 2009

11 years ago at The Oscars

Wow it's crazy to think that 11 years ago on March 23rd 1998 my Dad and I were walking down the red carpet....

I could of sworn I had pics in my scrapbook but I think I took them out to frame for my Dad for a present one year. I will have to snap a photo of it next time I am over at his house. You can still get an idea of what we looked like walking down the fancy red carpet with the photos I posted. I remember it like it was yesterday, we were running late due to the horrible traffic and our limo was probably #29 in the line 0f 100 and something waiting to pull up to the red carpet. We finally arrived and out we went, as soon as we stepped out of the limo flashes were going off and all the paparazzi were taking our pics. About a minute and 47 flashes later they realized we weren't famous. So in we shuffled as many stars were giving their red carpet interviews. It was so crazy to see everyone in real life. I was in awe, and was taking it all in moment by moment. Here are some pics from my BIG night....


the first page of the program
Our tickets
All the presenters from that night (Notice 5th down on the right hand side, we sat right above her. I am telling you I have had some close encounters with Madge but still have yet to meet her. One day...)
The Winner is..... The Titanic
This was the dress I wore it was floor length, complete with a scarf and gloves of course :)... (like I said I will have to get the good pics from my dad)
This is the tux my dad wore(this pic was from another function but you get the idea)

Monday, January 19, 2009

Memory Monday


I got this idea from Cindy over at Cure Cf for Reilly

Since you guys loved the baby pic of Osc so much I thought I would post some more baby pics.....



Oscars 1st Halloween....
The day Lills came to live with us... Osc is checking things out.
He probably smells his biological parents... Lilly was from the second litter so they are brother and sister in real life not just in my lil world :)

Baby Lills....

I took her everywhere in this handbag...