CHD Awareness Week.

It's heart month! This heart month seems different then other heart months. I'm not exactly sure why, I just don't seem to be in my groove. I'm trying to be that person who educates others about CHD. I post pictures, I try to do edits. My hearts just not in it.

 

(one of the edits I've done this year)

I've even stopped doing edits for other. I kind of have a love hate relationship with edits at the moment. And with the way people ask for them. No respect and no manners!

I don't know. I want to be more into it, but sharing a picture is about all I can muster. 

Maybe because this heart month is different. This heart month marks 1 year since Kylie died. Actually today is the actual day. 1 year ago today. That seems so surreal to type. I still can't believe it. She is the only CHDer I met who has died. My heart is still broken over it.

(fly high Kylie bug!)

I had a dream about her not to long ago. Some of you may remember my promise left unkept, if not read it here. In my dream, we played. We played and we played. She even ran. When I visited her in the hospital she wanted to play with me, but couldn't for more then a minute. She was just so tired. This dream was so reassuring. She can play now!! And I got to keep my promise!!

I had a dream about my dad also. I swear my dreams are taunting me. I'm so use to my dreams taunting me, and torturing me. After surgery I had a lot of nightmares that hurt, physically, they hurt. I'm even use to my dreams taunting me about now being able to have babies, but this one was different. My dreams have never taunted me before about my dad. And it just hurt.

(one of my favorite pictures of me and my dad)

In the dream, we were looking for my dad. It went back and forth between looking for my dad, and a ring of my dads. It was weird. But I just know, we couldn't find him. At one point the ring turned into a spider, again, it was weird. I just know the theme of the dream was we couldn't find him. That he is lost. And it just tore at my soul because I knew in my heart, he isn't lost. I know exactly where he is, and I cant go there!! I had this dream twice. Each time it broke my heart. 

(leukemia isn't what killed him but I know it had a very big hand in his death)

Anyways, so, I know this post is all over the place. But I just had to get that out. Like I've said before, this blog is more of diary for me. So please be patient with me. CHD is hard, and not all of use always want to celebrate heart month.

But since it is CHD awareness week, I will leave you with some CHD facts.

-1 in 100 babies will be born with some kind of CHD
-That is about 40 thousand CHDers born every year!
-4 thousand of them wont live to see their first birthday

-thousands more wont make it til adulthood.

-For the first time ever, more then 50% of CHDers are adults!

-Most CHDers will require at least one invasive surgery in their lifetime

-There is no cure!
-Transplant is NOT a cure. As one doctor once said "Transplant is taking a fatally ill person and turning them into a chronically ill person."

It will not break me.

So my blog got a make over! As we all know I'm very indecisive and have a hard time committing to things. I'm obviously not sure I like it. I'm not sure I like my follow button, it doesn't seem to be working quite right. I also need a new signature, but I cant figure out how to get a new one. So right now this will work. 

I've been wanting to write more, to keep my blog and my facebook page more up to date. I just seem to have the worst writers block. It would be nice if someone would help me with topics. Every time I ask though, no one seems to have any suggestions. I'd love to write something that heart moms and dads would want to read, I just don't know what that is.

I've been frustrated with life recently. It seems that the medical bills will NEVER stop. By the time I get these cardiology bills paid off, it'll be time for another appointment. I love being in Utah, but part of me wonders if things would have been easier in Idaho. I just don't know anymore. It's hard to not be sure of things. 

I'm missing everyone. I miss my mom, I miss seeing her everyday, and having movie nights. I miss my niece and nephew. My brother got a new job in North Dakota. Its great, he really needed the job, but I'm sad he moved. He's no longer just three hours away. He's 12. I cant just get in the car and go see him and the kids. That just sucks. My boyfriend now works crazy hours and I hardly see him. I'd just love to cuddle and watch a movie, but no.

Oh and now my car is leaking fluid. It seems like everything is building up. Everything is trying to overwhelm me. It's trying to crash down around me, to suffocate me. To break me. I'm trying my hardest not to let it. I wont let it. But its hard. But that's why I'm trying to start back to this. To be able to get it all out. To work it out in words. If anyone happens to read it along the way, well that's awesome. If they don't, which I pretty much assume they wont. Well, that's okay too.

Decisions, Decisions.

I want to write, I need to write. I'm just never sure what to write. But I'll just write and see what comes out.

I finally moved out of Idaho! And I'm super happy where I am, but I honestly think getting everything switched over might just be the death of me. Plus with all the moving, and having a 2 story apartment, my pain is worse then usual. But I'm in Utah, and I'm near friends so its nice. 

I think most of you who read this either follow my fan page, or are personally friends with me. But if you aren't there's some news. I dropped my rheumatologist because she just seemed, not the brightest in the box I guess you could say. I was getting super sick on the chemo and I called her asking if she could give me nausea meds. The chemo was helping, I was just so sick and miserable. She said no. She dropped my dose. Which of course meant the pain came back. The lower dose just didn't help. But I still got sick, and it was killing my immune system. I just kept getting infection after infection (respiratory, sinus, so on). I just couldn't get better on the meds. So I called her and told her I stopped them. They were making me sick and I wanted to try something else. She told me "The meds aren't making you sick, its just a coincidence" she wanted me back on them. So I thought about it for a day and decided no. So I told them I wouldn't be seeing her again.

Thankfully I found a new rheumatologist who came highly recommended, who is actually in the town I moved to! I found him online, and I asked a friend about him. Apparently her friend use to work with him and says he's amazing! I found myself a new primary here also, and when I mentioned I was going to a new rheumatologist in October, someone over at the budge clinic, he immediately asked "Dr. Walker?" and when I said yes, he said how amazing he was. So I'm super stoked to meet this Dr. Walker. It sounds like I found the right doctor!

But I've been thinking. I've been thinking a lot about what I want and don't want and I've decided that I'm going to tell him I refuse to do the chemo again. It just makes me so miserable. I feel worse on it, then I do off of it. I understand it helps slow the progression of the disease, but I just don't think I can take it anymore. I'm hoping he will have other suggestions on things we might be able to try, but I understand I'm complicated. It wouldn't surprise me if he said there was nothing else. I know a lot of the meds taken for autoimmune arthritis you cant take if you've been treated for heart failure. Which I have.

I'm really hoping he can help me, but I'd honestly understand if he couldn't. I just hope that if he cant, he can recommend someone for pain management. I hope no one thinks I sound like a drug seeker. But I hurt, and I don't want to keep hurting so much.

My last 4th of July

4 years ago today, I was certain it was going to be my last 4^th of July. My last holiday, period. I wanted it to be amazing, 4^th of July is like my families Christmas after all. So my brother and I made a trip to Wyoming to buy fireworks to make it AWESOME. I remember the day, it was the day Michael Jackson died. Goodness the drive was horrible because they played all the crappy MJ songs and none of the good ones I knew! And we had no CDs! It was a good day though, I was slowly ticking off things on my bucket list. No one really knew what I was doing. I never let anyone know I was going to die.

Everyone felt HORRIBLE about surgery being done at Primary Children's. Everyone, my mom had a bad feeling, my grandpa. On the 4th of July even my best friend knew something wasn't right. She called my crying telling me "You can't die on me!" It tore me apart that this was hurting everyone so much. I even wrote goodbye letters and hid them under my computer keyboard so they would be found when they packed up my stuff.

So, we did a big 4th of July, bottle rocket wars and all. It was so much fun. I didn't really participate in the war because I couldn't run. I was in heart failure, and my heart was dilated and up against my breast bone. I was in so much pain and so tired. But I had fun. It lasted well into the night. The next morning we got up early and headed to Utah.

One of my bucket list items was making a road trip with my brother. Utah wasn't a big road trip like I really wanted, BUT, it was a road trip. I couldn't do any other kind, I was to sick. So on the 5th of July we headed to SLC, we stopped at Lagoon on the way. Spending the day with my brother was awesome. Riding rides was awesome. I didn't last very long, we only stayed a couple of hours, but it was worth it.

Things happened, surgery was changed, want to know how? Read here and here

After surgery was changed, I felt so much better. I met with the new surgeon and I just knew, I would be okay.

My brother worked so hard to make my "last" 4th of July  an amazing one. I'm so happy I won my disability case and got paid so I could make this 4th of July and amazing one for him. I couldn't do a lot, but I was able to do some.

I'm so grateful for my life and family. I'm such a blessed person.
I'm glad I have many more 4ths to come. 

Let's Day Dream

So I wanted to write, and I had no idea what to write, so I asked my facebook friends for suggestions. 

My friend asked me: What would your life be like if you didn't have a CHD?

At first, I didn't think I could answer that. This is all I've ever known, and you know what, it isn't a bad life! Its actually really good! I may have days where I hate it, but its brought about so much good in my life and I couldn't imagine life without it. 

But then I started day dreaming.

What would life be like!?

Maybe I'd be married, and maybe I'd be a mommy. 

Maybe I'd be running marathons! In the past year, all I've wanted to do was be able to run!

I know for sure I wouldn't be in Idaho. I would have a full time job and living on my own, maybe in Chicago. Salt Lake and Spokane wouldn't even have been an option. 

At that's when it hits me, knowing those places wont be an option. I can't imagine never meeting all the wonderful people from Spokane and Utah. I can't imagine never know all the wonderful CHD families I've met in person, and online all over the world. 

I stop day dreaming. If I can't know these people, and I know for a fact I wouldn't know them if I didn't have a CHD, I don't want to imagine.

CHD is hard, so very hard. Its scary, and at times, its a true nightmare.

There is so much heart break in the CHD community.
But at times, there are triumphs to. And those we celebrate. 

There are things I cant do, that I really wish I could. But, its my life. 

There is so much love and support in this "heart family" 

I wouldn't want it any other way.

My Advice to CHDers: It's okay.

I've had a lot of CHD parents I met, in person and online ask me "What advice would you give me?"

Recently I visited a mom in the hospital who asked that exact question. My answer is always, "treat them normal, they will know their limits." I also added to my advice, "You will never regret fighting for him (her). (S)he is worth it." It made me start wondering what would I say to a CHDer as advice. I thought about it for a while and I think I figured it out. So here it is.

It's okay.

It's okay to be scared. CHD is very scary and it is OKAY to be scared. There is a quote I like, before there can be courage there must be fear. 

It's okay to cry. Tears are not a sign of weakness, tears are a sign of weakness leaving your body. It is 100% okay to cry. Some days you might hurt, or be scared and all you can do is cry. That is okay!

It's okay to not like your scar. Some CHD parents say that us CHDers should be proud of our scars. Personally, I am, I like showing off my scars. But I do understand what its like to not like it. Because as I kid, I didn't like mine.  I understand how it can bring back memories of a really painful time in your life. It's okay to want to hide it. Its okay to not want to show it off. Its also okay if you do want to show it off.

It's okay to be angry and wonder why me. Life isn't fair, we learn that at a young age and its okay to be upset. Just know God gave you this special heart because you ARE  strong enough to handle it.

This life is hard, and its scary. You will learn your limits and there may be a few things you cant do because of your heart. But know your heart doesn't define you. You have CHD, CHD does not have you.
Your life can and will be AMAZING! 

A Promise Left Unkept

It's not that I didn't want to keep it, because boy did I. I would have loved to keep it. But I didn't get to.

 -Kylie and I-

I've mentioned Kylie on here once or twice before. I loved to visit Kylie when I was in town for my appointments. She had a beautiful smile, sass that could fill a room and contagious giggles. The first time I visited Kylie I was made to make a promise. A promise to come back the very next day after I had my "lub-a-dub" checked out. Lub-a-dub was what Kylie called her heart. Kylie was patiently awaiting a new lub-a-dub (heart transplant). So as promised I went back the next day. And we compared out stickies because I was wearing a 30 day event monitor. 

 -Kylie and I comparing stickies-

Those two visits were fun. We laughed a lot. Kylie thought it was so funny that if we took my lub-a-dub and her lub-a-dub and put them together we'd have a full lub-a-dub. When she saw my stickies she asked me why I had it and I told her my lub-a-dub was sick too. I told her this yesterday, but seeing the stickies really made it dawn on her, and the smile was priceless. At the end of that second visit I made the promise I'd never get to keep. I asked Kylie how she'd like it if once she got her lub-a-dub and she felt better, I'd come back and play with her. She said okay and I promised her I would. 

I visited Kylie whenever I was in Salt Lake. Each visit was a little bit shorter. Kylie was shy, and not feeling good. But we still had fun. She let me sniff a book with her. And we played a little.
My last visit was in November. She was in the CICU by then. When I arrived a nurse was drawing blood and she was in a chair with her back towards the door. I gave her mommy diet mountain dew and she was grateful because she hadn't been able to find one all day. I told Kylie that once she was done with the blood draw I had a gift for her. I talked with her mom about how my appointments went and how Kylie was doing. Kylie kept turning around looking at me, like she remembered me but she was shy. So I just stood there behind her. Once the nurse pulled out the tube Kylie immediately turned around and said "she's done!" The nurse hadn't even stood up yet but Kylie was ready for her gift.

So I walked around and crouched in front of her and noticed how swollen her body was it broke my heart. But I put on a big smile and held out a gift card and asked if she knew what is was. She didn't. I said I knew she recently got an Ipad that all her heart family pitched in for, and I knew how much she loved it. So I gave her a Itunes gift card so she could go on a shopping spree. I gave her the gift card and told her I wanted her to buy whatever she wanted that mommy said was okay. Mommy said Kylie got what she wanted and I smiled. I told Kylie and her mommy I was glad I got to see them and left not wanting to intrude to long. 

About 2 and half months later Kylie passed away. She got the ultimate lub-a-dub in Heaven. And that was the end of the promise. I never got to go play with her again. My Salt Lake visits will never be the same. I went to the funeral and got to say goodbye, but I'm heart broken. That was one promise I really, really wanted to keep. I miss that beautiful girl.