Sunday, August 3, 2014

It's Not Just Our Hearts

In my last post I mentioned the psychosocial issues that adults with CHD face. According to one study, about one third of all adults with CHD have some sort of mood or anxiety disorder and most go untreated.

Anxiety is a given for many of us. We are a pioneer group. This is the first time in history that there is a solid population of adults with CHD - we used to not make it to adulthood. Many of us face repeat open heart surgeries, valve replacements, pacemaker implants and changes, and a small group faces heart transplants. Many of us have high-risk pregnancies or are told that for our health and safety, we should not attempt getting pregnant. We wonder if our babies will be a statistic like us and have CHD. We wonder if it's actually genetic and there is something we can do to stop it. Sometimes we have to go on disability because our hearts severely hinder our physical abilities. We struggle with the fear of dying too soon. We wonder how typical elderly complications will impact our hearts.

I fear that I'm a burden on my family and friends. I fear that they won't want to take on my appointments and future procedures and possibly surgeries. I fear that no man will want to be with someone who is chronically ill. I fear that even though one cardiologist has already said pregnancy will not be an issue, that my current one will not clear me. I fear having a child and going into heart failure. I fear leaving a husband as a single father. I fear that some day I will instantly drop dead. Now these aren't fears that consume my life, but they definitely come into my conscious thought stream on a fairly regular basis.

All of that fear is what I'm guessing leads to the mood disorders. My hunch is that we get bogged down with the fear and that leads us into depression. The fear can be crippling. I've watched it unnecessarily take over people's lives. Can anyone blame us though? We did absolutely nothing wrong, our parents did absolutely nothing wrong, doctors did absolutely nothing wrong, yet we are born broken.

I am a lucky one though. I don't have any diagnosable emotional disorders. I have an unbelievably supportive family and incredible friends who willingly choose to keep walking with me through months of testing and months of nothing notable with my heart. I get to support my CHD peers and walk with them through their dark times. I think that's what keeps me grounded.

Disclaimer: I am not a psychologist, psychiatrist or therapist. All of the above statements are my opinion and should not be used for psychological diagnosis or treatment. If you are struggling with your emotions, please find the courage to reach out to someone for help. There are many great resources out there.

Sunday, July 20, 2014

That Time I Published Without a Title...

As a travel update, I have states 18 & 19 on the books. First up will be Chicago for a long weekend and then Cleveland for a weekend. September is going to be a great month!

There's been a lot going on for me emotionally & mentally these days. In one of my small groups at church, we're reading Immunity to Change. It's an intense book that challenges you to ask yourself what's the one big thing that I could change that would change my entire world. I haven't figured out my one big thing yet, but right now I'm working on improving my listening. It's proved to help change my attitude at work and I've kind of failed so far at applying it to my personal life.

I've also made some solid realizations when it comes to dating. For whatever reason, I choose to fall for and date men that I know with which I will have no future. Most of them are workaholics. When I know the guy will eventually blame work on the reason why we can't date anymore, it triggers something in my brain that says, date him. I'm not entirely sure why I self-sabotage in that manner. If I had to take a stab at it right now, I'd say it's a combination of reasons, mainly my lack of self-confidence & overall fear. I know those are things that everyone deals with so I'm not too concerned about them.

One thing I am concerned about, though, is how tongue-tied and I'm guessing bright red I was while talking to a very attractive man earlier today. It was like a throw back to middle school. Thankfully this time I could just get into my car and drive away after I spoke what could only be described as gibberish. I honestly can't recall the last time my brain froze like that. When almost all of the men I've dated I've met online, there isn't a reason for the guy to make my brain stop because we've already had some level of communication. The last guy I met organically (since that's the hip term these days) was after a few beers at an industry event and I tend to get chatty after two beers so I was chatty and therefore had no time to get tongue-tied. That leads me to the last time I met a man who left me dazed and confused and oddly enough, I met him in the same way I met the guy from this morning - in children's ministry. The last guy turned out to be a bad situation all around, so I'm cautiously optimistic about this guy.

In conclusion, since over-analyzing usually gets one nowhere, I'll just chalk up everything that's happened in my dating life to my CHD. Why you ask? Because CHDers have lots of psychosocial nonsense going on, but I'll save all of that for another post.

Sunday, April 6, 2014

My Life's Blueprint

My church just finished up a three week series today on God's will. I can say that my prayer life has immensely changed in just that time because of week one's sermon. I believed God had a blueprint for my life. I thought He had a grand design for the major points in my life - my parent's divorce, their second marriages, college, jobs, relationships, etc. Everything I've gone through has been a small part of some cosmic great plan, right? Wrong. So so so wrong.

Everything I've gone through in my life has definitely played a part in shaping the person that I am today. I won't go into all of the lessons that I've learned along the way, but I can say that my life would look completely different had my parents stayed together or I chose a different college for example.

The one part I could never figure out was my heart. Why me? Why not my brothers? Why not one of the telemarketers who calls my office and bugs me? I always figured that there was some divine reason that I was born with TGA. I don't think about it often, but having a purpose to my different life would at least offer some comfort. I don't think God ordained for me to be born with a heart defect. I think I was just the lucky one in 100. I do know though that had I been born healthy, I would not have any reason to show God's love to the other members of my community.

This is the part where the logic starts to unravel and my brain feels like it's going to explode. I get so close to understanding a small part of God, but my human mind just can't handle it.

It's like God's plan all along was that people who love him need different circles to share his love with so that everyone can hear about it and have a chance to experience it. I'm in introvert through and through. I don't typically choose to go out of my way to meet new people. It's like he knew that I would need some help reaching others I typically wouldn't reach. Some people are given a heart for overseas missions. Some people are given a heart for domestic missions. Some people are great public speakers. Some people will reach millions through their books. I get to reach the congenital heart defect community - a community that is unique. A community that is mine, but not my family or friends'. It's an incredible burden that I'm honored to have. I get the humbling opportunity to love on spiritually broken as well as physically broken hearts. My ultimate purpose is to love those around me. I believe God has intentionally made each of us different to fulfill that purpose. It's knowing this and having the two lines below of a song we sing often at my church playing in my head that will remind me of God's plan for my life.

Give me faith to trust what You say
That You're good and Your love is great

Sunday, March 2, 2014

#3 - Pennsylvania

To be perfectly honest, I'm drawing a blank as to why I chose Pennsylvania as the third state I visited. My guess is because my other aunt and uncle currently live there so it made sense after my Virginia post. I'm racking my brain trying to recall a memory of visiting there before my aunt and uncle moved there.

I've never been to Hershey Park or Amish country or Pittsburgh or other places for which Pennsylvania is known.

I have been to Elizabethtown and Philadelphia multiple times and so I'll just write about those places.

My Aunt Janine and Uncle Tom used to live about ten minutes away from us. When I was in high school, my uncle got transferred to St. Louis (why I have been to Missouri) and then he got transferred again to Pennsylvania. Elizabethtown is adorable. It has a college in it that reminds me a lot of where I went and they have Turkey Hill stores which means yummy ice cream all the time. I haven't really explored the town too much past the college and the high school. My youngest cousin performed in "High School Musical" while I was in college so it turned into a road trip with my roommate, a friend from school, and one of my other cousins. I should probably tour that place a little more.

My favorite city in PA is Philadelphia. Cheesesteaks from South Street? Yes please. One time I went and for some reason the only outerwear I had was a Redskins hoodie. I most certainly turned it inside out and wore it around the city. The zoo in Philly is cute. You know what else is cute? The King of Prussia Mall. By cute I obviously mean humongous. While technically not actually in Philly, it's close enough that most people assume it is. One of my previous jobs held my training in King of Prussia. I spent many evenings of those 3 weeks walking around that mall.

The last city that I've spent memorable time in is Johnstown. My sister-in-law is from there so I spent a fun filled Saturday there at a winery and out to eat at hibachi. I also spent a weekend up there for the wedding.

I clearly haven't been to nearly a fraction of the places that PA has to offer. You would think with my undying love of chocolate that I would've at least gone to Hershey Park. Maybe I'll try to remedy that this year.

Sunday, February 23, 2014

I Have a Blog?

Yes, I'm a slacker. No, I haven't completely forgotten that I have a blog, I just remember it at inopportune times.

At some point I'll do my Pennsylvania entry. It should hopefully be a little more exciting than my Virginia entry, but I'm not making any promises. Spoiler alert - It won't include Hershey Park; I've never been.

Since my last update my adorable and incredibly smart nephew turned two! Last weekend at his birthday party I found out that he will be a big brother in August and I am overjoyed. My favorite role in life right now is the one of aunt. It's probably because I love my aunts so much. I love the special bond that I'm making with Owen and I love watching him grow. At Christmas he wasn't willing to give me a hug and kiss goodbye, but at the end of his party I figured I'd take my chances. I bent down and asked for a hug and he came walking over so I scooped him up. I asked him for a kiss and he gave me the cute open-mouthed toddler kiss that could melt a hardened criminal's heart.

While I'm excited, I'm guarded. My sister-in-law will once again have a level two ultrasound to make sure the baby's heart is alright. I'm praying that this baby checks out healthy just like Owen did.

Speaking of praying, life has a funny way of making us eat our words. I changed churches. I'm still adjusting and it's still not "home" to me, but I believe I made the right decision. I'm connecting each week with a great group of women and I've never been more consistent in my prayer life. Maybe I was back in high school or college at some point, but it's been years at the very least. I'm genuinely praying for a few close friends who don't go to church. I'm moving in with one of the friends and another girl we went to college with in May. I know my integrity as a Christian will come into focus and it's a challenge I'm preparing myself for. I'm praying that I have the strength to be a consistent mirror of Jesus' love in their lives.

On the health front, I will not be having surgery to repair the complication from the catheterization. It's a decision that the vascular specialist made and that my cardiologist supports and I trust my cardiologist with everything in me. Next week I have the awesome opportunity to go to Capitol Hill and speak with most likely the aides of my Senators and Representative about the Congenital Heart Futures Act. I have a chance to share my story with the people who allocate the funding for a surveillance program and research. I was telling my growth group girls about it since I will miss group this week and they all gasped when I told them that congenital heart defects are the number one birth defects in the world. Their reaction reaffirmed why I decided to become an ambassador for the Adult Congenital Heart Association and relit the fire to make sure everyone within ear shot hears about CHD.

As much as I have a passion for speaking about CHD, I should have an even larger passion about sharing Jesus. Jesus is love and love is symbolized by the heart so I think there's a connection I can make somewhere in there. I feel like I'm coming out of a fog of confusion and I can clearly see my purposes in life. I'm meant to fight for people to know they are loved by a God who is big enough to create galaxies and small enough to know every hair on their head. I'm meant to fight for people who are born with heart defects to make sure they get the care they need and deserve while measures are taken to provide answers to questions previously unanswered. I'm meant to fight for the education system to ensure that every student is getting the best education for them to prepare them to do great things in this world. I'm truly happy these days and I love the passions that God has placed inside of me.

Wednesday, January 1, 2014

2013 = The Year of the Tease

I know I haven't written in a while. Since I last updated I crossed another state off of my list. I went to Texas near the end of October to train for a volunteer position for an organization that I love. I can't wait to see all of the people I met at the training this year and to welcome in the new people selected to join our group. Since it is a worldwide day of reflection though, I thought I would look back at this year.

In 2013 I found a perfect condo well within my price range, but was outbid on it. Then it came back onto the market for like a split second and was dashed from my within my reach again.

I was supposed to have a final surgical procedure before Christmas and finally close the saga of tests and procedures since I switched to an adult clinic, but surgery is now tentative for February/March so that case is still open.

A year ago this month I ended things mutually with a good guy then went a looooooong part of the year not dating anyone. I met the guy from the last post, but he and I are destined for friendship. I met another guy and things were going okay until red flag after red flag crowded my vision of him and I ended things.

As soon as I ended things with him I reconnected with a guy I talked to almost 2 years ago and went out on a date with once. He didn't remember the date which was fine with me because I remember that I was super awkward. We had an intense few weeks of dating which involved meeting his parents, his next door neighbors that he adores, and having brief conversations with him discussing money and the next step in his career. Things were going really well and then he told me that he didn't have time for me. I found a great guy who supported my moral standing on things, was willing to go to church with me sometimes, and had dreams and ambitions with the motivation to achieve them. His dog loved me. It was easy to spend time together and I never felt worried if he didn't get back to me right away. I had an incredible guy within my reach and all of a sudden, he removed himself from the situation.

When he walked away I was devastated. I felt hurt and betrayed. I don't fall for many guys and I threw caution to the wind and fell hard for him. I try to view these things that happen in my life as having a purpose because that's what a good Christian girl does. She looks at the bad in her life and moves on because God has something better in store for her. The only time she is supposed to look back is to find the lessons and meaning behind what she went through.

God and I have had it out over the past couple of weeks. There's been pleading and reasoning of my disbelief that he would be okay with seeing his little girl cry. If he hurts when I hurt, why didn't he just take the pain away and bring him back to me? I'm not sure what grand lesson I'm supposed to take from this year. It seems like the obvious answer is to stay faithful to God, but I've been faithful for 12 years. I think I've learned that lesson. Maybe I'm supposed to learn how to tune out that evil voice in my head that is trying to make me feel inadequate and broken. Unfortunately, that voice still wins most of the time.

If there's one thing I've learned from having CHD, it's that life is uncertain and can change instantly, for better or worse. CHDers, especially those of us who have known since we were little, adjust because we have to even if we don't like it. I know I don't handle adjustments well especially when I have no control over them, but I've learned to just keep going. It's the only option available. Thankfully there are glimpses along the way that remind you why you kept going. I'm living for those glimpses these days because after a year of disappointment, they're a bright spot that I know I can count on.

Here's to hoping this year is full of fulfilled expectations! Happy 2014!

Tuesday, September 24, 2013

Roller Coasters and Deal Breakers

I like to keep my dating life private except for a few of my close friends. Sometimes my family doesn't even know that I'm dating someone. Two days into this week and a guy that I've been on one date with has become my boyfriend to my coworkers. Oh the industry I work in. It's a funny little one. The problem with my coworkers teasing assessment is that I don't think I'm making it to date two with my "boyfriend." Part of me is sad, but a bigger part is relieved.

Dating is such a roller coaster of emotions. My roommate and I were talking about it today because I had a rough day (not all dating related) and so I needed to unload a little bit. I've been perfectly content not dating anyone, but then I met someone in a place that I never wanted to meet a guy and of course my hopes got built up and now we've been on a date and there were signs that things were going to progress, but now? Now I think it's done. It gets better though. See now that I've written him off in a sense, I'm sure he'll make an appearance back in my life tomorrow. It's how my dating life has always worked. I try to not go to extremes, but it's hard for me. I'm a commitment type of person. I stick by people through thick and thin. Once I've decided to let you in, I'll give you anything. I'm just not sure I'd ever be able to let this guy in though. CHD makes up a small part of why.

I try to hold off on telling guys about my CHD. My roommate says that any guy who is scared by it is an idiot. That was encouraging to hear, but I know I can't get mad if a guy doesn't want to live a life with a partner with a chronic condition. It's a lot to ask someone. It's a commitment to at least yearly doctor appointments, genetic counseling to make sure it's safe for me to get pregnant, extra care during a pregnancy, being asked to make my health decisions for me if I can't, a lifetime of uncertainty, and many other things. It would be easy not to bring it up with a guy I meet right now and the guy I just went out with doesn't know about my health. Ask me again after I've trained to be an ambassador for the Adult Congenital Heart Association. Do I just leave out my volunteering when he asks what I do in my free time? What about in December when I'm facing a minor surgical procedure? If he wants to go out near my surgery, I either have to lie or tell him I'm having surgery and then explain why and about my condition and so on.

I'm also a total hypocrite. I don't want to be with someone with a chronic illness. One chronic illness is enough for me. A beautiful woman I look up to is married to a wonderful man and both of them have chronic illnesses. It doesn't phase their relationship one bit. I don't think I could handle it though. I go through enough emotions over me. Please don't make me add the emotions and worry over someone else's medical problems. I'm on an emotional roller coaster on a daily basis as is and am not looking to add in extra loops or drops. I know people in general look at me and don't see the label "sick" and it's a label I prefer not to use, but in an essence, I am. While I'm capable and ready to navigate this CHD road on my own, I have faith that a co-pilot is going to come along someday and help smooth out the roller coaster it is. All I have to do is get past the first date...