Friday, September 12, 2014

3 Years, NO hospital stays -- WHAT?

And a General Update
I've been wanting to write for quite some time. I just never seem to find a topic I want to talk about. But I guess its time for a general update. I downloaded the timehop app and have realized it has been three years since my last hospital stay. 

The ER trip 9/4/11
It took 3 ER visits to get admitted (one on the 4th and 2 on the 5th)
I've been thinking about that time. I cant believe its been three years. Three years of NO hospital stays. How does that happen? I was having one hospital stay each year from 2008-2011. How am I not having hospital stays anymore?

Oh trust me, I'm not complaining. I am happy to be hospital stay free. I just don't get it. 

TEE and Cardioversion 9/8/11 
It worked! How did it work? Nothing ever lasts on me. My fontan didn't last, my maze failed leading to said cardioversion. How is this lasting? It's just a surreal experience. Its crazy that now my heart is one of my smallest concerns. My biggest concern is my muscle pain. 

As some know I was diagnosed with Psoriatic Arthritis on May 28th 2012. Well recently the diagnosis was changed to Rheumatoid Arthritis. I'm one of a small percentage of people who doesn't show up in blood work.

Life has been interesting. I've been given oxygen at night.

 I was diagnosed with a fused vertebrea, C2&C3 are one. Its causing a lot of neck pain. We tried botox, it made the pain worse, so we stick with pain meds. I was able to go to Massachusetts and meet my autoimmune arthritis/heart sister Hailee. It was so fun!! I love that little girl.
I got to see some family too

I moved again, to Brigham City, got myself a nice little house, and some stitches.
Razor blades and coumadin don't go well together.
I had such a pretty bird for a day. 

I love my tiny house. It fits me perfectly. 

I've been trying to attend as many CHD events as possible in between drs apps and bad pain days. I love these kids. 
 Reid and I when I was at his house
Baylee and I at the heart walk.
 Visiting Teagan at the hospital while he waits for a new heart. 

I love being able to give these parents hope, and letting these kids know they aren't alone. That its tough, but we are together in this fight. That we are heart sisters and brothers.
  AND last but not least, a picture of my niece and nephew, because they are beautiful! I don't see them enough, I love them!!!!!!!
Chase is 3! I cant believe it. I remember my brother and SIL bring baby Chase to see me when I was in the hospital. 
 Alyssa is growing into a beautiful little lady. I can't believe she's 2!!!

Tuesday, February 18, 2014


Heart week is over. I have to say I'm kind of happy about that. Not that I don't like CHD awareness or anything. I love CHD awareness. Its so important! I'm just happy that I'm no longer seeing heart mom pictures as every other post on facebook.

Let me state something. I love heart moms. I will NEVER down-play their part in the CHD journey. And I am not say they don't have a hard time. I know they have an extremely hard time. I can't even imagine being them, having to watch a child go through what we go through.
I just get tired of seeing all the heart mom posts. Its ALWAYS a heart mom this, a heart mom that. Sometimes a heart dad is thrown in there. There is one person everyone forgets though, the CHDer themselves. I always see these beautiful heart mom pictures posted, I want one for CHDers also! There are poems about heart moms, I don't see many about CHDers though. I was looking at shirts, and I found all these super cute heart mom shirts, yet the CHDer ones are either for babies, or ugly. It just gets frustrating that we are over looked!!!

We the CHDers, we have the toughest part. We are the ones who are sick. We get out chests cracked open. We have to take our shirts off and get echos, which can be very uncomfortable at times. We have to get the EKGs, we give gallons of blood one vile at a time. We are the ones who can't always do everything we want. 

We are the ones covered in scars.
 Reminders of some of the hardest things we've had to go through.

Like I said. I know heart moms, and dads, have a hard journey too. But SO DO WE!

I'm just so tired of being overlooked.

Tuesday, February 11, 2014

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."

Thursday, January 30, 2014

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.