Long Update! Lots to Talk About!

Hello Everyone!

I thought it’s time for another update on how things are going for me. This is a Long update, so hang on tight!

Being in California has been a learning experience for me that’s for sure. My health has been a lot better the past 2 weeks, which I’m so happy about. I haven’t had any SVT (very fast heart rate) episodes and I’ve been keeping my allergies under control with over the counter medication. The weather has been slowly getting hotter and I spend a lot of time in the apartment by myself, which can be lonely at times. Most days I just keep the apartment clean, eat, sleep, watch TV, and go on the computer. But I’m ok with it.

Last Monday I did take my boyfriend to work so I could have the car to meet up with a Heart Mom, her 10yr old son, and her family. I had a good time. I love meeting CHD families, CHD kiddos, & CHD adults! I don’t get out much since I’ve been in California because I don’t really know anyone, so I had a good lunch out and enjoyed meeting new people. Thank you Becki Mobley and London for meeting me! :D

Other things have happened the past week or so that has stressed me out! I got the CHD Awareness Bracelets that I ordered and mostly all of them looked terrible! I was SO upset! I found out after I got them that the BBB (Better Business Beau) revoked their accreditation last year! Ugh! So, they won’t refund my money; I tried talking to them, e-mailing them, and doing a Paypal dispute & all I got was an offer to make more which I don’t trust them. I was upset for a week, but I’m ok now. I got scammed, It happens & I learned from it. I’m going to make different bracelets through a different and better company. Hopefully I earn all the money I lost back! Fingers crossed. I’ve been checking the BBB for a good wristband site that doesn’t have their accreditation revoked and doesn’t have an F rating like the one I went through. Please, if your thinking on buying wristbands from any company, be careful! Order samples first and check the BBB as well as forums for complaints. I don’t want anyone in my CHD family to get scammed out of money like I did. I’d also like to note that I have been a bit hurt by a Heart Mom who thought I was selling the bracelets for personal gain because I wouldn’t be donating the money. Please know I would NEVER use my CHD for personal gain! EVER! I WANTED to sell CHD Awareness Bracelets because I’m deeply involved with raising more CHD Awareness because I have to LIVE with this CHD my WHOLE life. I wouldn’t be gaining anything from the sales. Does paying a few medical bills from the sales mean I’m gaining anything? I don’t think so! I DON’T want ANY of you to think I’m gaining or that I use my CHD for personal gain because I DON’T and why would I anyways! That’s just wrong! If I was making too much money then I WOULD donate some! I WISH I could give money to CHD research right now and I WISH I could do more for my CHD family! I’m working on it, but it’s NOT easy when your limited! I LOVE ALL of you! Please don’t think badly of me!

The past week my Goddaughter, my bestfriend’s daughter, has been on my mind. I got a phone call last Friday from my bestfriend saying that Kairi (My Goddaughter, she is 1) had a check-up at the doctors for some shots. No big deal right, well Kairi has had a heart murmur since birth and murmurs run in the family. My friend has a murmur, her grandma does, and so does her uncle… all have been fine. The doctor was listening to Kairi’s heart and got quiet. He said that it sounds worse and he wants her to go get checked out by a Pediatric Cardiologist. My bestfriend is a bit freaked about it, but I told her it will be ok. I gave her the name and number of my old cardiologist that I had for 22yrs. She will make Kairi an appointment with him. I’m worried too, I mean she is already 1yrs old, shouldn’t she have been check out a long time ago? I pray nothing is wrong! Please keep Kairi and her mother (my bestfriend) in your prayers. It will mean a lot to me! Thank you!

The last couple of days I’ve had thoughts that I wish I didn’t have know is a reality in my future… open heart surgery. The past 5 or 6yrs thoughts of open heart surgery pop into my head every now and then, but as each year passes I get more anxiety about the real reality that in the next 10yrs or so I WILL need one! I PRAY it’s longer because I’m doing so well, but I know that is not guaranteed. I really shouldn’t be worry about it or thinking about it because no one knows what tomorrow holds, but to know from a doctors words that it is in my future, scares the hell out of me. During my last cardiologist appointment with my new Cardio that is not just a Pediatric Cardiologist, but also specializes in Adults with CHDs we talked or I should say he talked about a Fontan Revision with my for a little bit. I got frightened! No one should have to be scared about their future like this. Most days I’m fine, but since that appointment two months ago, it’s in the back of my mind.

When I was growing up I barely worried at all about my heart condition. For the most part I was a “normal” kid with some limitations. I knew I had a heart condition, that I needed to take meds everyday, that I had lots of doctors appointments, that I needed to be careful, etc But those were part of my normal! When I broke out into hives when I was 16 things mentally and physically changed. I started to learn lots more about my heart condition. I learned I was a one ventricle repair, that I had “Half a Heart”, that this was serious. It hit me like a ton of bricks. I think that when I developed my anxiety disorder. Since I was 16, little things have changed: My energy levels have lowered more, I have SVT’s (vey fast heart rate) to deal with, I have muscle spausms, allergeries effect me more, & I’m more aware of what’s going on inside of me. My cardiologist (both my new and old one) have told me that I’m doing well despite these issues, that this is just my new normal! WAIT… I DON’T WANT A NEW NORMAL! I want to be that kid again where I didn’t need to worry, didn’t have minor issues, had more energy, and was NOT fully aware how bad my heart condition was… NOW they are talking about surgery in the next 10yrs! HOLY CRAP! I WANT TO GET OFF THIS RIDE! Is there a STOP BUTTON? Guess not! I get my first Cardiac MRI this year and in the next 3yrs I will be getting a Holtor Monitor and a Heart Catherization… Yes ALL precautionary BUT he told me straight to me that all this stuff will help them when I need the surgery! Yup! That hurt! To top it off, I was told to start looking for warning signs of a big issue and when it happens, that’s when IT happens! IT? Yup, intervention! To say I’m scared can be an understatement BUT MOST days I’m doing well and DON’T think about it! BUT today I wanted to share.

I’m the type that doesn’t like to whine much. I like to put on a smile and be positive, but sometimes I NEED to share what I’m thinking. I KNOW I SHOULD NOT worry about all of this RIGHT NOW, but it was brought up to me just two short months ago and I KNOW he HAD to tell me, he is a doctor and he wanted to share my reality with me. I just wasn’t prepared I guess. I’m trying my HARDEST to slowly put it all in the back of my mind and put it to the side until things get to that point of intervention. I’m going to KEEP living my life to the fullest and be grateful for how well I’m doing NOW. Yes, surgery is most likely in my future, but who knows, they say in the next 10yrs, but I could beat the odds again and have it be 20 or NEVER! That would be nice! I’m going to start thinking like that because anything can happen and I NEED some positive thoughts!

Ok SO sorry for the vent! I NEEDED to share and get it off my chest! I feel SO much better now! Thinking of POSITIVE now! I MUST! I HAVE to!

Prayer Request: I have another prayer request for my Mom and my brother’s fiancé (Ashley). Ashley had cancer a few years ago and went into remission. She just got a biopsy done this week because a test came back abnormal. She will know next week if the cancer is back. Please pray! And My Mom had minor surgery a few months ago to remove something abnormal, they thought they got it all, but another test revealed they didn’t. She needs to have yet another surgery to remove more. Please pray! Both of these women mean a lot to me! I pray everything is OK! Seems like everything happens when I leave! I just have to have Faith! The prayers will mean SO much to me!

Ok before I go, here is my newest CHD Awareness Montage! Enjoy! And Please, pass it on! Thank You!

Make an on-line slide show at www.OneTrueMedia.com

*I will end this LONG post with some pictures! The first four are of the drive down to California, I took them driving in the car in Wyoming and Utah. The fifth picture is what we see driving down the street near our apartment, pretty neat. Last picture is one my mom sent to me for my precious niece, Liliana! She is 8 months old already! I miss her! Look at that smile! :D


Wyoming


Wyoming


Utah


Utah


What we see when we drive in our car everyday! Neat!


Isn't My Niece, Liliana cute! Hehe!

Praying and thinking about SO many!! It breaks my heart to read about all the heart breaking things my CHD/Heart Family is going through! Please know I'm praying! Have Faith! And your not alone!
All the messages of support, e-mails, and much heard prayers mean SO much to me! Thank You! ♥

With LOTS of HOPE, Love, and Faith,
♥

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,
♥