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,
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