"Aha" Moment

It feels good to feel good; that is exactly what is running through my head today. I'm not very good at keeping people in the loop; although my medical prognosis is somewhat of a clusterf@*!, so i'll use that as my excuse. The last 4 months have been more of a roller coaster ride: diagnosis, rochester, misdiagnosis, hospital stays, cardioversions, new meds, old meds, back to rochester, and the list goes on. But today, I can finally say, I feel good.

I had an ablation two weeks ago in Rochester. The surgery took nine hours and left me feeling like I was hit by a bus. It was the worst nine hours I don't remember of my life. The forty-seven medications I was on following at least kept me pre-occupied with my time. Of course, I was googling and reading blogs and joining support groups and googling more and chatting with people who have had similar stories just so I could find that confirmation I was looking for- "It is normal to feel like this after this type of procedure." I eventually found that answer and many more (some of which I could have done without) not from one individual or source, but from myself.

I'm never going to have this: "your chest pain will diminish in 16 days, your 6 lbs of water weight disapear in 4 days, your heart palpitations will last 3 months, you will need your second ablation in 3 years, and you will develop a slight leg twitch due to the medication you are on in your 31yst year of life."

I do have this: "at any specific point in time of my life I will have information and I will have an opportunity to make decisions. I can make best of it." That is the only answer,especially with such a rare disease.

When I initially started this blog, I knew this would change me. I knew that I would need "a change of heart; one without fear of uncertainty." What I didn't know was that in order to have a change of heart, I need a change of brain. I've had to hear some unsettling realities in the last six months and a change of thought process is mandatory to make any progress forward. Today I finally felt a step forward. I can't even remember where I saw the quote- probably facebook... one of the way too many support group walls I follow (i'm in support groups for diseases I don't even have?). The quote was this:

"Every day is a gift."

I bet 9 out of 10 of you have heard this. DEEP. MOVING. NOT. I remember seeing this on posters in my confirmation classroom. I've probably heard it 100 times and read it 1000 times in my life and and I've never fully processed the words, until today. Recently I've had a "slim glimpse" of what a miserable day could consist of, but today I actually felt the words. I am happy for today, I'm happy to feel good. No doctor, website, facebook page, or person could tell me that. Nor will they be able to tell me how I will be feeling in 6 months or six years. That is the reality and that is the answer. Today, I can finally relate with that all too common quote, and it feels good:)

Thank You...

I don't have anything super exciting to say today, except thank you! Thank you for the phone calls, voice mails, texts, emails, cards, flowers, facebook messages, prayers, and support! I am a lucky girl.

I also spoke with my doctors today and they were able to make a little sense out of this big mess, which felt good. The picture below is the closest thing I have to a diagnosis but they ruled out a lot of scary things. We are still baffled as to what is going on but at least I know my next step; get juiced up, stick catheters into my right and left atrium, and then ride a bike. I'm not lying:) My tone may sound sarcastic, but that and working with a congenital/genetic specialist are next on the list. I feel good and I really like my doctors, so I can't complain. I will keep you posted.

Thanks again for all the kind words, it means a lot!

Failed to Mention...

After reading my initial post, I realized that I started the post with "today was one of the scariest days of my life" but failed to mention the "scary" part. This is also kind of the "funny" part. It wasn't the fact that I was diagnosed with a disease that is seen primarily in 90 year olds and cats. The 260 bpm wasn't what set me over the edge. And I was ok with entering heart failure 40 years earlier then your average adult (we have medicine for this, right?).

It was the referral to Mayo Clinic that really slapped me in the face. You would think I would be excited; these are the people that create miracles. Their specialty is everything that every other hospital system is not. You google any medical term and Mayo's definition is the third one down(aside from the very reputable webMD and Wikipedia). Who wouldn't want that referral? My thought process... I just got the last ticket on the referral route. The only thing higher than a referral to Mayo is a referral to heaven,and I don't think Dr. H was handing those out.

It's funny how your mind can interpret information. Or is it scary? If you haven't already had the joys of sitting through a motivational speakers' philosophy on how "changing the way you think can shape  the way you live," this sounds like an example they would refer to. But realistically, before anyone decides to "change the way they think" I think they are going to see a speeding bus fly by that says last stop MAYO in the dashboard.

This brings me to the real motivational part. I spent a week in Mexico last year with a friend. Our mission was pretty straight forward- fun. Like 16 pina colodas at the pool bar fun. Our mission was not safety and we lacked Mexican common sense. One late night out my friend decided she wanted to go home early; I was in charge of the purse that night (money). Unfortunatly all I could give her was an American dollar and a cigerette. The scary thing, with slight hesitation she took the goods and got on the bus. Her last stop was not Mayo, it was the scary part far from the Cancun strip. One small nap later, a tour through the inland portion of Cancun, and a very kind old bus driver.... My friend made it happily home. The funny thing, my "bus ride home" entailed a legit car, friends we met at the hotel, and a credit card; sounds pretty promising right? Well it wasnt. I did learn you can pretty much buy your way out of anything in Mexico, and if you dont speak Spanish it's way more costly. Needless to say, I made it home much much later than my friend.

So scary or funny? Interpret as you please. The scary thing.... You control the interpretaion. The funny thing.... It doesnt matter- you're not driving.

Click share? Why not?

Today was one of the scariest days of my life. I mark it up there with the day my dad killed himself, or the day I left for college, or the night I spent in the Spanish jail. You don't realize how scary uncertainty is until it's the only thing you realize. Four months later, three cardiologists, every possible cardiac test, a best estimated guess diagnosis, a referral to Mayo and hours of googling and I'm wondering if I ever should have mentioned chest pain at that one doctors appointment. Did I just set myself up for a lifetime of worry, medical expenses, and inconveniences? I almost think I would prefer to unexpectedly croak over while jogging around a lake. Should have, could have, would have... Here I am. I've never been one to journey (if that's what you call this) alone, so I'll invite you with the hopes I can touch a life, change an attitude, let someone know they are not alone, or at least crack a smile. I shall blog. A story filled with hope. Perhaps a miracle. A story filled with growth. Perhaps an epiphany. A new perspective on life; a perspective that entails uncertainty without fear. The story of a changing heart.