Monday, April 25, 2011

Late Night Thoughts and Feelings

It's very early Monday morning that I'm writing this... right now it's 1:32am California/Pacific time.

I don't usually write posts this late, but I have things on my mind that I thought I'd share that I haven't before.

As most all of you know, I'm a 23yr old CHDer (Congenital Heart Defect/Disease) survivor with Tricuspid Atresia, Hypoplastic Right Ventricle (aka HRHS) and over 21yrs Post Fontan (2nd open heart) along with a few others things.

Anyways, I've been part of the online CHD community for over 4 years now... it certainly has been a truly amazing experience and blessing, but on the other hand it has also been a very scary and hard community to be a part of. I've read and heard of many many CHDers, young and old, passing away...some I even had the honor of getting to know or getting to know their parents... the first time it happened I was totally beside myself and cried so very hard... fast forward to now, years later and passings just numb me a bit. My mended heart still aches with every passing.... each one earns angel hero status in my book. I know that each one of these angel CHDers would want me to keep living, to keep fighting, to keep spreading awareness, and to just get the most out of life in general as that is why my parents, why CHD parents fight for their child! So, I try to keep going and not grieve so much... but trust me each one of them bothers me very much... each passing gives me survivors guilt and scares the living h*ll out of me!

I know we CHDers, young and old, are here for a reason... we have a plan just like everyone in this world, CHD or no CHD. Trusting and having faith is what keeps me going. Each Adult CHDer copes differently and has different opinions, but most do agree we are here for a reason and given our special heart for a reason way way beyond our understanding... some find peace, others struggle, then some like me are in the middle of peace and struggle.

With each passing, as much as I keep living and going it's hard... for the most part I can get back up, be positive and hold on to faith... others it hits me. A passing that hits me is hard to explain, I don't always cry... it's can be like a bad night in general for me without sad news of a passing which includes a sleepless night... thoughts of life run through my head... I keep listening to my heart beat... is it too fast? too slow? doing weird beats? I think I felt something? No I'm fine. I get my stressed muscle spausms down my back and chest, I shake... I'm super scared to go to sleep, too dark, everything is unknown... what happens next?... then the thoughts that I hate... I want to be able to get married to Chris, I want to be a mother, I want to have a career, I have to publish my own book... will I get to? Please God let me! Will this nightmare end!? Then thoughts of my future surgery(s)... I don't want one... I don't want to go through anything... what will happen... I don't want to do this anymore I want a WHOLE **** HEART! Why me? WHY WHY WHY!! Sometimes on a really bad night I cry.... I feel like screaming... I walk around clutching my chest... I tremble... I want to breaks things. I had some nights were I just cry, just sit and cry. Other times I get so worked up I got into an anxiety attack and hard to breath, so I try to calm down. Then I eventually fall asleep from exhaustion... though sometimes I wake up on and off because of bad dreams, dreams I don't even want to share, very scary ones for me... This is what different bad nights can be for me... a little glance into a breakdowns of a CHDer.

BUT I wake up the next morning and it's new day... I usually put it behind me and thank God for everything I have. I'm blessed, I'm grateful, and I can be strong enough to keep going. After every breakdown I pull myself back up and say to myself "My parents, surgeons, etc did not work so **** hard for me to waste my life being in a bubble all depressed... I need to get moving and embrace everything... I get ONE chance at this just like every person, ONE!" I know my special heart was not a mistake and I do really love my special heart... I may have a "Half a Heart" but I do NOT have "Half a Life"!!! But I have really bad dark days... ones that have been hard to be put into words.

Chris, my parents, and others tell me all the time I need to live, to put my health and heart first, to learn some good coping methods. With each CHD passing a CHD parent face their child's morality, but with each CHD passing I face my own. Chris, my parents, etc don't like seeing me deal with this over and over and over again... what kind of life would I have then? So I take breaks from the CHD community, I take steps back... I regroup, rethink, and relax. I love all of you, but sometimes it's necessary for my health and my heart. When a person is stressed and/or depressed their heart rate changes and sometimes your heart beat, their heart and body works harder... this is not good for a CHDer. Positive thoughts and support helps... so does talking and I know Chris and my friends are good for that. I do love my life... I embrace it and live to the fullest... but there is a dark dark side to having a CHD/Chronic illness.

So, with each CHD passing I want you CHD parents to know: With Adult CHD survivors like me... please be gentle in talking with us... please understand we are going through totally different feelings and emotions then you as parents (and no CHD parent unless they have a CHD themselves can tell me our feelings are the same, they aren't...facing your child's mortality to your own brings different feelings... things CAN be similar though... respect for each others opinions, feelings, and perspectives along with support is what we need to do)... what we need is to be offered support... ask us if we want to talk about it and if we don't then give us space.

Alright that is all I have left to say or write before my eyes go blurry from being so tired. It's now 2:08am my time and I need to try to sleep... I will probably fall asleep from exhaustion tonight as tonight we lost a CHDer which led me to write this post.

Thank you for reading! Have HOPE... and LOTS of it.... HOPE HOPE HOPE... HOPE for CHDs!!!

Sending hugs, blessings, and prayers to my CHD community/family... you all are super amazing and super special to me!

With Lots of Hope, Love, and Faith,

Friday, April 15, 2011

Highs, Lows, & Craziness!

Where to start?!?!

Lots have been going on this past month... I guess I'll start with me...

3 1/2 weeks ago I woke up early in the morning and my big left toe was swollen, bleeding, and hurting. It looked like a cut in the skin by my nail. So, I took amazing care of it, washed it, but Hydrogen Proxide, & neuosporin every few hours. (**I did call my Cardiologists office back in Michigan, but the nurse prac. that I like wasn't helpful or very nice, just said go to Urgent Care if think I need too... yea I was NOT very happy**). After a week it was looking a lot better, but still swollen, so off to Urgent care I went. It stinks being in California, having no doctors, and only Michigan insurance... luckily my crappy MI insurance does cover ER and Urgent Care visits, but would have gone either way. I got there, explained my Heart condition in basic terms, but I had to write down meds and whatnot on papers anyways. The Doctor was super nice, she took a look at my toe and said it was a very minor infection, if that. Awesome! She gave me a prescription for antibiotics to be on the safe side. We were in and out in no time.

After 3 days on antibiotics I got the constipation side effect (sorry for TMI) REALLY bad and painful! I tried to just fight through it, but the next morning my allergies were really bad and I had high anxiety... guess what happened? Yup, I had a MAJOR anxiety attack, it was so bad that I had trouble breathing... (I've had anxiety attacks before), so I called Chris and he came home from work. I talked to my mom on the phone until Chris got home. I thought I might have to go to the ER, but Chris calmed me down, got me allergy medication, made me lunch, and talked to me. Chris also called the Urgent Care doctor about the constipation... it was decided that instead of taking 2 antibiotic pills a day, I would take just one. I've been doing that since and been feeling fine... my toe is almost 100%... it's just a bit bruised... since I'm a CHDer I heal a little slower. So that was my craziness.

As for me health wise other than my toe, I've been doing pretty good. Allergies have been really bad for me and my muscle spausms in my chest & back have been really acting up lately.... they kept me up last Thursday night... ugh... I will get through it. I've also been getting on and off migraines, but that could be stress too... again I will be ok.

As for my family, it's been a really tough month for both of my parents especially my dad. My dad gave me a scare, but he is fine now. My mom's house is now up for foreclosure sale, but my mom has plans for a new chapter in her life and move to Dallas, Texas. I talk a bit more about things on my personal Facebook as all the people on there I know and trust, but this is a public blog so I can't do that plus some things should always stay in the family and close friends. But please keep my family especially my parents in your thoughts and prayers if you can. thank you!

My online Fairy Tale class ends this week, so I'm excited to be done with it, it was getting a bit boring towards the end. In 10 days Chris and I will be on the road going back home to Michigan to live there for 9months and finish college. Chris got the job at Intel and already signed, so he starts in Jan 2012... so we will be moving back to California. It has been hard being away from family (and my doctors) for a year and I can't wait to see them in 2 weeks! It will be hard to move back next year, but I trust God has a plan for me and Chris as well as my family. I will miss my mom going to Texas and Chris' mom who now lives in Ohio so lots of changes, but with the economy we need to do what we need to do to survive... we are all still family and we will make it work... we still love each other very much no matter where we live and we will keep in contact as well as see each other when we can.

I've been busy cleaning, packing, and wrapping up my Fairy Tale class. I'm not really looking forward to the drive back through the mountains as all the different elevations make it hard to breath sometimes, but I'll be ok. Things will be crazy when I get home to Michigan... finishing school, seeing family, helping my mom out of the house, helping my dad, going to get Chris' stuff from his mom in Ohio as well as visit her, filing medical bankruptcy, my two Cardio appts in June, etc etc. Whew! But I will get through all the highs and lows.

I will keep you all posted about my move and of course my awaited Cardio appts in June which is making me nervous already... I get my first ever Cardiac MRI.... hoping the results are good and no Cardiac Cath in the near future, but if it happens then I will get through it.

***On some happy note: I will get to meet a CHD family with their CHDer this Saturday for a bit, then meeting another one or two on the way home to Michigan, then will be meeting some in Michigan & Ohio when my free time allows. Love sharing my story and spreading Hope!!***

I'm going to end my post with a picture that I found of me from 4 years ago, I took it and made it black and white, then found a quote I loved.... this is the finished product. :)

With Lots of Hope, Love, and Faith,