Thursday, August 22, 2013

I'm Becoming a Super Hero

Happy Thursday, Internet World!

Heart News:

Not much. No big revelations at the moment. I had several tests done last week: sleep study, pulmonary function test, VQ scan, whole body scan and chest xray - whew!

Waiting to meet with the Adult Congenital Heart Defect Doctor, but that's not scheduled until Sept 24. I am on a cancellation list, so hopefully I'll get in sooner. Then I will still need the heart cath and who knows from there!

My body is extremely stressed and having a hard time just keeping me alive, so every little thing that tries to get in, gets in. Since this all started I've gotten several abscesses, a sty in my eye, a weird bruised feeling on the back of my head (with no bruise) and now an itchy rash over my entire body.

This is my "done" face:

Life Pro Tip: Don't get a serious heart condition. It's not fun stuff.

However, throughout this whole process, I am convinced I'm slowly turning into a super hero.

Phase 1: Testing and monitoring.

First, the sleep study. I wish I had a picture, you guys! I had 20 wires attached all over my body - in my hair, on my face, arms, legs. I had straps around my waist and chest. I also had to wear 2 cannula in my nose at 1 time! (one for the oxygen, which is my normal one. The other was to monitor the oxygen coming in, which is worn for the test). I looked like a straight up alien. Then someone watched me sleep.  

Phase 2: More testing, liquid ingestion

During the pulmonary test, I was sat in a clear plastic tube with a mouth piece attached and forced to do breathing exercises. Then I was given a breathing treatment. It was a vapor. They said it was albuterol, but I don't actually have proof of this. All I know is it was a blue liquid. Blue liquid is always involved with turning into a super hero, right?! ;)

Phase 3: Radioactive

For the VQ test, I was laid on a bed, with large, square cameras surrounding me (super close to me). First they put a mask over my nose and mouth and had me inhale a radioactive gas. Next they injected me with a radioactive liquid.

They said there were "no side effects" and it was for the testing. But they can say anything.

Who knows what will happen now....

Here's what I've been thinking though, what kind of super hero will I be? Let's look at popular super heroes these days:

I cannot be any of the following:

Iron Man



I'm allergic to metal. Unless they get rid of that, too, that doesn't look promising.

No to Spiderman. Arachnophobia - I'm not down for that.

Let's hope not Batman. He's kickass, but his parents are dead and I want none of that.

Black Widow is pretty cool.

But leather is not going to be flattering on me. Plus I sweat a lot. All I can think of is this scene from Friends.

  Captain America... I'm not so much for the walking flag look.

Don't get me wrong, Chris Evans is hot, but the outfit is not for me.

Plus, I'm too lazy to carry around that shield. Which would also take out Thor.

I'm thinking Mystique.

I know she's on the bad side for X-Men, but really, she could go either way. So I could be super hero or super villain. Plus, the younger version was played by Jennifer Lawrence and I just love everything about her.

I also like Loki, even though he's a villain, too. He's a trickster and he can be in two places at once, which is just awesome. Plus, Tom Hiddleston is adorable (which is just a side note)

On the other hand, I'm more likely to turn out like Bruce Banner/Hulk. Too much radio activity, I'm a big girl and I'm not super graceful, so I'll probably start smashing things.

Of course, I'll be my own super hero, but it will mostly be like "Super Lazy" and that's just less fun!



Saturday, August 10, 2013

Online Dating: My Attempt to Become a Nigerian Princess

I know you're all probably curious about my title, but first:

Heart Update:

On Wednesday I had a TEE (camera down the throat for a clearer picture of my heart). They found a hole in my heart and the medical terminology is Atrial Septal Defect. I might have had this since I was born and it is just now causing issues. It is likely that this is what caused the Pulmonary Arterial Hypertension.

One of my procedures was denied by insurance (go figure) and now that they know this, they will submit again and insurance will have to approve. I meet with an Adult Congenital Defect Specialist hopefully soon. We'll see if they will do surgery or if it is too risky. 

Essentially: Now I have a "Holy" broken heart!

Also, I got another job to help pay my medical bills. It will be a 10 hour per week, work from home situation. Just a little side cash to help out. I am very lucky to have found this work! 

Now onto the real story.

In the past I tried online dating. I think it can work for some people (I've seen it happen) but after trying it out, it's just not my thing. Not if I'm being serious about finding a partner.

However, I've since given up on seriously looking for a spouse, I thought,why not give it another shot? (no need for the "but you're so young" "don't give up" yada yada yada, let's all move on, shall we?) 

One thing I do know is that a lot of scammers will use online dating to try and prey on vulnerable people. It is sad, but it happens. I won't say that most people in the online dating game do this, but they are out there.

And we all know about the men pretending to be Nigerian Princes. That's one of the older tricks in the book.

                                                          (Yes, I know this is Eddie Murphy)

So, I feel like I should have a little fun with this. Create an online profile, with my picture of me wearing the oxygen (to really play up the vulnerability) and go for it.

When they start asking for help transferring money, I'll play along (not actually giving out any personal information or money, mind you).

I'll also require that they call me princess, because what little girl didn't always want to be a princess when she grew up?

I feel like if I have to be stuck at home, exhausted and bored, I might as well become a Nigerian Princess, right?!?

Ok, I might not do this, but I gotta have a little fun. ;P


Saturday, August 3, 2013

I'm Back! And still weird.

It's been over 1 year since I've updated this blog.

I've had good intentions, but then again, I'm also lazy and easily overwhelmed.

I've recently be diagnosed with an incurable heart condition called Pulmonary Arterial Hypertension. Blarg. I'll get to more of that later. But essentially everyone has been telling me to journal through this journey. I'm all like "don't tell me what to do" but then again, I'm sure they're right. So I decided to start this back up. It will be part "holy crap I have a serious heart condition" and part "I'm still weird as crap." So.... enjoy!

Here's a quick recap:

* I went on an amazing trip to Eastern Europe with my awesome cousin, Jaclyn, in July/August 2012. We traveled to Greece, Czech Republic, Poland, a quick stop in Slovakia, to Hungary and ended in Croatia. It was pretty much the best 10 days and Jaclyn and I got really close. I wish I could write every detail and share every pic, but no one would stick with the blog!

 * In September 2012 I went back to Toronto to visit friends. It was so good to see my Canadian boys and meet my new friend, Brian (middle)!

* In October 2012 I went to Amsterdam for the first time, travelling for a work training. I got to see my friend Abby who has been living there almost 2 years, met up with Abbers and Dee (from the bus tour in Eastern Europe) and I got to explore "the mother land" (I'm 1/2 Dutch) on the company dime!

* In December 2012 I went back to Amsterdam again with work. This was for our annual meeting and Christmas party. Almost everyone in my office went, as well as most employees from across the globe. It was so great seeing old friends and meeting new ones!

* In December 2012 I also had my heart broken (figuratively, the literal broken heart comes later) by someone who I considered a very dear friend. It still hurts and it was significant enough for me to consider it a major event in 2012. It find it poetic justice that my heart it literally broken now. I still miss him even though he hurt me.

* In January 2013 I got the pleasure to accompany my friend Kelsey and her church group to a conference in Atlanta, GA called Passion. We also went to Nashville for a short trip on the way back. Though I was having a lot of physical complications that cause a lot of physical and emotional issues for me, I still look back on that trip with good memories because I got to meet some amazing people!

 * In January 2013, after Passion, I gave up soda, started Weight Watchers and started going to the gym. I lost 20 lbs in 4 weeks!
* In February 2013 I broke my first bone! I broke my pinky toe in an embarrassing moment. I had to put the gym on hold until it healed.

* In March 2013, my toe healed and I got bronchitis for the first time. The gym would have to wait again.

* In April 2013, I moved out of the condo and into my own apartment. I love Kelsey and am so happy we are still friends, but she's all married now and it turns out, she wants to live with her husband and not me! ha! I love living on my own though and I love my apartment. I also love not having to wear pants at home.

* In April I noticed I was still having trouble breathing, even though all other bronchitis symptoms were gone. I would get out of breath with the simplest movement - walking to the bathroom, taking out the garbage, etc. Not even a year earlier I was 20 lbs heavier and walking around Europe! Not to say I didn't get out of breath on that trip, but not as easy as I was now. I was worried, I knew it wasn't weight-related. So, I got a new doctor (didn't like my old one) and started trying to sort out the problem.

 * In May 2013, after a couple of medications hadn't made any difference, my doctor wanted to rule out life-threatening things. I visited the ER to get a CT scan of my lungs to see if I had blood clots in my lungs. All clear! But no answers. My doctor recommended that I see a cardiologist to rule out heart issues. The cardiologist said that my history wouldn't suggest heart issues, but ordered an Echocardiogram (ultrasound of the heart) and a heart monitor to be sure.

* In June 2013 I changed roles at work - my role had been eliminated and the 5 of us in the role were put into new positions. I still work for the same company, but with a new team and new challenges. I love my new team and new boss, but I do still miss my old boss. Luckily I can see him at work! This month I also had the annual family vacation and we had a lot of fun playing games and enjoying time on the river. My breathing showed to be a challenge, but I made it through! Kelsey's bachelorette party and wedding also happened this month!

* In July 2013 I had the Echocardiogram (there was quite the wait to get in) and the heart monitor. The monitor was for 24 hours and super classy ;). On July 10, 2013 I got a call from the cardiologist office. They told me that I had Pulmonary Arterial Hypertension. I didn't really know what that meant, but they had scheduled an appointment for me later in the month to go to a clinic that specializes in the condition.

* Pulmonary Arterial Hypertension is essentially an issue with the artery that brings blood from the heart to the lungs. As a result, the heart is overworked trying to get the blood to the lungs (the blood then picks up oxygen and is sent to the rest of the body. My body was definitely lacking oxygen!). The right side of my heart is enlarged and overworked. Eventually, it will most likely fail. My symptoms now are shortness of breath, dizziness, chest pain, heart palpitations and an unproductive cough (I've had that since end of December!).

* On July 29, 2013, I went to the Heart Failure, Transplant and Pulmonary Hypertension clinic. This is a group of specialized nurses and doctors to help me manage this condition. 10+ years ago, I might have been gone within a year. Luckily now they have procedures to get more information and medication/therapies to help me live comfortably. There are people who have lived with this 10-20 years, so it's not an immediate death sentence! I have an amazing team of doctors who are helping with everything. As they said, I've started a long-term relationship with them and I am part of the PAH family now!

* As of July 29, I was started on oxygen - 24/7. I have a large machine at home with a super long tube so that I can access all of my apartment with ease. I have to sleep with it on, too, so it needs to be durable! I also have a portable machine - it's basically like a carry-on suitcase in size and it rolls like one as well. I'm struggling to get used to that, but working on it. I have a handicapped card for my car as well.

* I have made sure to have one-on-one sleepovers with my amazing niece and nephew in July and August. I am glad I could do it now, while I am still able to get around with relative ease. They are my favs.

* My parents are the biggest blessings to me. My dad has been taking me to all my appointments, which is amazing. My mom is helping me with cleaning, grocery shopping, etc. And they are both great emotional support. My family is wonderful and so supportive. My friends and co-workers have been amazing to me as well - ensuring I'm doing well, sharing kind/uplifting words and some even making me food! It's such an energy saver and I am so grateful!


* In the coming weeks I have 6 tests/procedures to be done. 2 are pretty invasive and those are being done on August 7. The rest will be done by August 15 and that includes a sleep study to see if I have sleep apnea. If I do, I'll have a full-on mask to wear at night. After the results come back, my doctor will form a game plan for me and see what kind of medication would be best for me.

* In September 2013, Jaclyn will be coming to visit!!!! I am so excited to spend time with her. My first travel challenge will be this trip, but I'm confident it will be great. Jaclyn is flying into Chicago and we are spending 4 days there together - hanging out, catching up and seeing the city (and a musical!). Then she'll come back to Michigan (for the first time ever!) to see where I live and see the family. I cannot wait to spend time with her. She has been an amazing support and the best friend.

* I had plans to travel to Amsterdam for work in December and then do a quick trip to London. I have always wanted to go to London and I was told to "travel while I can." With the oxygen, I face some challenges (needing approval from the oxygen company and they are hesitant, the battery in the portable not being able to last throughout the day - same challenge I face here, but a bigger obstacle there). I am going to work on it and I hope that I can still go.

That's about it. Like I said, I hope this blog will still be weird and witty like I usually am, but I needed to get this recap done so I can get on to more fun things. I'll probably be updating a mixture of serious/non-serious, but we'll see.

Thanks for reading!