Friday, May 28, 2010

CHD Awareness Bracelets!!!

Ok, I'm offically CRAZY! I bought 400 (made a mistake on my status) CHD Awareness Bracelets.

**I have alot of Medical debt, bills, and have college bills to pay for, so the money I make from the bracelets is going to that.**

I will have TWO sizes of bracelets: Adult and Child I have a limited supply of Child coming though.

I will have TWO different styles coming in Adult sizes: 1.) a lavendar color bracelet with a purple color fill 2.) a teal color bracelet with a lavendar color fill Child bracelets will be a lavendar color with a teal fill

Writing on ALL bracelets: On the front: ♥Hope~Love~Faith~4~CHDs♥ On the back: Spread CHD Awareness!!

PRICING: $5 dollars for one, but if you buy 4 or more they will be $4 dollars each **This INCLUDES shipping in the US! IF you live OUTSIDE of the US then it will be more money... wish I will let you know SOON!**

PAYING: I will set up a Paypal account on my blog soon and post it on my status when I have it set up BUT if you'd like to pay by check or money order then message me I will take names and orders now (just leave a comment here), to ensure you will get bracelets.


Thank you for the prayers and messages of support!! Truly means alot!! I'm hanging in there!!

With LOTS of Hope, Love, and Faith,

Thursday, May 27, 2010

An Update from California!!

Since, I’ve been in California I’ve been doing ok. I’ve had a few panic attacks and have moments were I feel very alone. It’s hard moving so far away from your family, have a three hour time zone difference when making phone calls with my family, not getting any mail, not having a job, and having other frustrations.I’m slowly learning to adjust and trying figure out what I’m going to do in California. I’ve been looking at getting a part time job and trying to get involved with the CHD Community over here. I’m working on getting online classes set up for the fall and just trying to enjoy a new chapter in my life.

Last week I was feeling pretty crappy. I was having a hard time breathing, with chest pressure, and my heart rate going a bit crazy. I called my cardiologist and had them up my dose of my Beta-Blocker. Two years ago it was upped by my other Cardiologist, but I never took it. Well, by the time I got the new dose filled I was starting to feel better and my heart rate was fine. I looked at all the side effects of the new dose and again (like 2yrs ago) decided against taking it. To me it’s not worth the risk. I’m calling my cardiologist back sometime this week to let them know. I think I was wrong to ask for a higher dose, I should have just gone with a holter monitor haha. Anyways, this week I’ve been doing a lot better, feeling better, and my heart rate has been fine. Go figure. I have a feeling a lot of it is allergies and mine have been worse since moving to California.

I like it here in California, I feel independent and I feel more grown up. The loneness is hard though and I want to do something to occupy myself.
I was going to design and sell some silicone CHD Awareness bracelets; had my heart set on it but I don't think I can do it… Most of you don’t know this because I keep a lot to myself, but here it goes… I’m living off of school loans, I have no real money to my name. I have no car and I’ve never had a job. I’ve tried many summers to get a job with no success and it doesn’t help when you have no car, my driver’s license is useless right now for the most part. My parents have been divorced for 4yrs now. Both struggling to keep afloat money wise. Without my pell grants from the government I would not be in college. Money is very tight for me, like if I didn’t live with someone with an income I’d be living on the streets! I don’t have good health insurance because I can’t afford it! I’ve tried to get Medicaid disability, but got denied twice and I had no money or time to go further. I have medical debt collectors up my butt and I don’t bother answering the phone calls or opening up the bills anymore. I’m looking for a part time job, but again it’s not looking good. Most of what is open you have to be on your feet all day or lift things which is totally out of the picture. I thought if I could order and sell some CHD Awareness bracelets I could pay some bills to stay afloat, but I'm still seeing if I can even afford to do it! If I did do it I don’t want the CHD Community mad at me because I’m not donating the money. Oh how I wish I could help my parents and everyone who is struggling, but I can't even help myself money wise right now! Ugh! I pray for my parents and my family and the CHD community that whatever money troubles they have that they will get through it!

I want the CHD Community especially CHD Parents to understand that it will never get easy living with a CHD BUT we CAN succeed and live a GOOD life, but if we don’t have some kind of support it will be very hard! The economy has hurt everyone in some way, BUT the adult CHDers have been hit hard! I don’t give off the impression that I’m struggling with money, but I am. You add money struggles with stress to a complex CHD and you have a mess! I’m DOING OK! I AM! I have a VERY loving family and a VERY loving boyfriend who without him I would be lost (and he is supporting me money wise right now, for that I’m VERY grateful). I just wanted to let you all know that I’m doing pretty good despite some difficulties. Living with a CHD is not easy minus other issues! Unless your a CHDer you will never know how it feels to go to bed scared yet not want anyone to know. To be thankful when you wake up because your alive. To sit at the Cardiologist knowing that it's your life on the line. To feel your heart, see your scars, take you meds, sit to take a breathe, to hope that something sudden doesn't happen during the day, pray that you get to see a long life. It's VERY hard! And unless your the CHDer you won't know. Don't get me wrong, I know from hearing my parents and seeing my parents that it's SUPER hard being the CHD parent. Watching your child in pain and having SO many fears, but it's different than being the one laying there. To ALL CHDers and CHD Parents being close and supporting each other is NEEDED because you will both cope differently.Being the CHDer or the CHD Parent will NEVER been easy, but it can have some VERY rewarding moments and ALWAYS has blessings in store! :D Never loose Hope and ALWAYS cherish each moment!I would LOVE to do something for the CHD world and spread CHD Awareness! That’s my passion in life! For now I will keep living day by day, being ever so grateful for what I have especially my health. I will continue to share my CHD Story and help others as well as finish my new CHD Awareness Montage.

Ok, I'm ending my rambling now. Sorry! Again, I'm doing FINE! I'm haning in there like I always do! I will continue to look at the good and not the bad! I know God is with me! :D

Please know I’m keeping MANY people in my thoughts and prayers! ALL of the messages of support, prayers, e-mails, and gifts mean SO MUCH to me! I'm VERY grateful for ALL of it! THANK YOU! You guys are Awesome!

Heart Parents: Stay Positive! Know I'm thinking of you and your kiddos. CHD kiddos, CHD adults, and CHD angels keep me going!

Before I go an adorable picture of my niece and I before I left for California as well as a pic of my little bother and I before I left:
Auntie Lauren Loves and Misses You Baby Girl!!

Aaron, Your Big Sister Loves and Misses You!!

With LOTS of Hope, Love, and Faith,

Tuesday, May 18, 2010

An Overdue "Thank You"!!

Over the past two months I have received some gifts from some very special and kind people in the CHD Community. I have also received SO much support, love, and friendship from MANY others in the CHD Community. SO here is a post to say “Thank You” to those people and a general “Thank You” to everyone else! I WISH I could say “Thank You” to EACH and EVERY one of you PERSONALLY!

The first one is a “Thank you” to Anne Marie for sending me this CHD sweatshirt and CHD Magnets (which I don’t have a picture of.)

“Thank You for thinking of me Anne Marie! It made me smile!”

A “Thank You” to 43yr. old CHD (Tricuspid Atresia) survivor, Steve, for sending me this really cool CHD Coin!

This is the Front of it.

This is the Back of the coin.

“Thank You SO much, Steve! You’re so thoughtful!”

And a BIG “Thank You” to Heart Mommy Tamara Lemus!!
A month ago on a Saturday I came home early in the morning (7am) to find a brightly colored box with Hearts on it from her! I just got done having a rough week and was going into another rough week with finals and moving to California. This was the best pick me up! Made my day and made me cry!

I sat down and opened the box… this card was on top:

I read the inside of the card, which she wrote a nice little note which made me cry.
Then, I took out the brightly colored tissue paper and I found these:

I started crying harder! The beautiful shirt and tote bag had my blog, carepage, and personal motto on it: Hope~Love~Faith


In the card she was thanking me for all I do for the CHD Community and wanted me to know that Heart parents really appreciate what I do and I give lots of hope and inspiration! WOW!

“Thank you from the bottom of my Mended Heart, Tamara! This meant a lot to me!”

***I know I touch A LOT of lives in the CHD Community, but I NEVER ask for anything in return! Just knowing I touched someone’s heart with my story is enough for me!
I have been SO touched by the kindness of not only these people but EVERYONE in the CHD Community! You guys have done SO much for me! From gifts to messages of support that get me through a lot of days and make me smile! To much heard prayers and putting me on prayer lists (and letting me know, which touches me heart so!) to e-mails that make me smile as well! To offers to help me out financially (which thanks but it’s ok. Your so sweet though!) to a Heart mom who is sending me a pulse ox (Deidre, THANK YOU SO VERY MUCH!!!) to friendships that I’ve made on and OFF the computer (Mary, Gina, Melonie, Cortney, etc I’m SO happy I’ve met you; You guys are amazing!)that will stay with me forever! ALL OF IT WILL! ALL of it warms my heart! Please know that even if I don’t get to reply back to everything I receive, it means SO SO much to me! You guys have given me so many smiles, support, prayers, love, and strength that I don’t know how to thank you! All I ever wanted to do is to share my story and give hope, but by coming into the CHD Community 2yrs ago I have received SO much more than I ever expected or deserve!

THANK YOU to ALL of the Heart Parents and CHDers our there for sending support, prayers, and friendship! Without ALL of you I would NOT be able to do what I do! I will NEVER stop telling my story and spreading CHD Awareness! Because of YOU and those CHD KIDDOS I have a passion; I have a reason to FIGHT and to live my life to the FULLEST!! THANK YOU!!! ♥

THANK YOU!!!!!!!!!!!!!!!!!!!!!!!!


Friday, May 7, 2010

Quick Cardio Appt. Update!

Sorry it has been awhile since my last update! We just moved into an apartment one Monday night and we don't have internet yet. I'm using the internet at the Apartments Office Lobby.

Most of you know that I had my yearly cardiology appointment before I left Michigan. This year was the first year at a different hospital, I moved to Mott's Children's Hospital. I'm now seeing Dr. Cott's who is not only a Pedatric Cardiologist, but he specializes in adults with CHDs!! :D He is an amazing Cardiologist; super nice and very informational!

Here is a quick low down of how my appointment went and I'll do more detail when I get internet next week:
-He told me about my Fontan surgery in detail, which I've never heard before. I had a very unusal Fontan he says, but it is working well.-He told me I'm in the 15-20% of old Fontan patients that are doing really well! Yay!-I didn't need an echo because he saw the one my old Cardiologist did on my about 9 months ago and said it was really good.-He gave me upfront statistics and his worries about my future for me. The only main concern is my 60% chance of developing rhythm problems. If I develop these then an ablation and possible Fontan revision would be in my near future! Praying that doesn't happen, but what ever my fate is I will deal with it then.-As a precaution, I will have my first Cardiac MRI in Decemeber when I come back to Michigan. Hoping that will go well. He says he just wants to know where my heart stands from a different view point which is understandable.-I will most likely be having a heart catherization in the next 2yrs to check my heart pressures, but that is not a prioity right now.-We talked about me ever having kids and it looks like I may be able to have at least one because I'm doing well. If I continue to do well then the risks to me and the baby are low. I have about a 1 in 20 chance of passing on a CHD to my child. So, we will come back to this subject later.

That's about it right now! Thanks SO much for all the messages of support and much heard prayers! They mean alot to me! The CHD community is like a second family to me! Thank you! ♥

Keeping SO many in my thoughts and prayers!

With LOTS of Hope, Love, and Faith,