Getting Back in the Swing of This

Well, I haven't been on here in forever... But I realize that it is kind of a good outlet for me.
Mainly, I'm sick of feeling horrible all the time and I just want to be able to vent about my frustrations as well as, maybe eventually, help some other people going through a tough time due to medical problems.
This post is mainly just to say I'm getting back in the swing of blogging.
And hopefully I can keep up with it this time.
And I feel obligated to share something funny:

I'm Stronger Than I Realize

This was the way I was feeling at the beginning of the year... unfortunately, I didn't get very good surprises.

I am feeling ok today. 

Today I had an appointment with my Rheumatology Nurse Practitioner. She is an amazing lady! I always feel better when I walk out of there. :)

She also has an idea to potentially help with the water weight: Lymphatic Drainage. It sounds interesting. I don't know a lot about it, but the idea seems to be stimulating my muscles so they will release the water in my tissue back in to my bloodstream and that will, in theory, help get rid of the water. And if all that happens is it switches to my bloodstream, well then we will be able to use a diuretic! So it seems to be a win win.

The only concern is whether there would be any problem with my heart handling the changes as well as my body handling the change in blood volume. So, more to come on that later.

The rest of the afternoon I spent with my mom. We went to Noodles  and Company, Barnes and Noble, and then Target.

I made it through the whole afternoon! And that is a big accomplishment for me. I know it doesn't really sound like that much, but any activity makes me feel icky. So, it was really nice when my mom pointed out that I was doing ok in the middle of Target! Hopefully, that means the meds are starting to work.

I am a strong person. 

I can get better.

I will live the life I want to live. 

It is just a hard, long path. And that is very overwhelming. But I know, with lots of support, I can get through all of this crap!

I also got a couple of books today:

1. http://search.barnesandnoble.com/The-Waterfall-Diet/Linda-Lazarides/e/9780749942533

2. http://search.barnesandnoble.com/The-Sleep-Doctors-Diet-Plan/Michael-Breus-MD/e/9781609611330/?itm=1&USRI=sleep+doctor%27s+diet+plan

THANKS MOM!

Now for a few random things I want to share.

The other night Ryan and I watched Dirty Dancing. I, of course, have seen it a million times, but Ryan hadn't seen it!

I forgot how great of a movie it is! 

It really has aged well!

And how can this scene not make you laugh! :)

Next thing:

The movie "Green With Envy"

http://youtu.be/6CloKbXtD28

Looks Great!!!

Finally, I just wanted to share a couple of things that have made me smile recently.

 HAHAHA!

Behind the Scenes

Country Music

Some days you just need a good country song to come on your mp3 player. Last night it was Up! by Shania Twain.

http://youtu.be/88cIzNmnZvI

Lyrics:

It's 'bout as bad as it could be

Seems everybody's buggin' me

Like nothing wants to go my way--

yeah, it just ain't been my day

Nothin's comin' easily

Even my skin is acting weird

I wish that I could grow a beard

Then I could cover up my spots

not play connect the dots

I just wanna disappear

[Chorus:]

Up--up--up--

Can only go up from here

Up--up--up--Up

where the clouds gonna clear

Up--up--up--

There's no way but up from here

Even something as simple as

Forgettin' to fill up on gas

There ain't no explanation why--

things like that can make you cry

Just gotta learn to have a laugh

[Repeat Chorus]

Oh yeah, yeah, yeah...

When everything is goin' wrong

Don't worry, it won't last for long

Yeah, it's all gonna come around

Don't go let it get you down

You gotta keep on holding on

It's 'bout as bad as it could be

Seems everybody's buggin' me

Like nothing want to go my way--

yeah, it just ain't been my day

Nothin's comin' easily

[Repeat Chorus]

Oh-- I'm going up [4x]

Oh yeah, yeah, yeah... 

Some Good News!

I have been having some serious problems with my heart rate, pain, sleep problems, exercise intolerance, blah blah blah. Lots of troubles and no real answers.  PLUS- I have been retaining water and over the last month I have gained 20 pounds of water weight!!! Not cool. I am insanely uncomfortable, I feel puffy and bloated, like my skin is too tight, and none of my clothes fit very well. That is really going to help put me in a better mood, right?

But, alas, I was able to get back in to the cardiologist, thanks in large part to Dr. Viera and my mom being pushy. Something is wrong and something needs to be done about that. 

So today, my cardiologist tells me that I have Postural Orthostatic Tachycardia Syndrome (aka POTS)

YAY! A diagnosis!! 

http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome

While there is no cure for POTS, it is manageable. It won't be an easy thing to get the ball rolling on recovery, but once I do, it will show a lot of improvement. 

This meant another med change today. But I am ok with that since it is now for sure the right direction. 

The hardest thing is going to be the exercise part of this. Since I have been feeling bad for so long, I haven't been exercising because I couldn't.  I have no strength so I feel like I am starting from scratch. And I have to make sure I don't over-do things for so many reasons. Plus, having 20 EXTRA pounds is the worst feeling in the world and does NOT make moving around fun.

I am frustrated with the fact that this isn't something that can be cured, but at the same time is is very encouraging to know what we are dealing with now. 

We might still be going to the Mayo Clinic to evaluate all of my interesting medical stuff.  And I will be getting a sleep study done and starting physical therapy to start to recover from all of my cardiac setbacks.

It is crazy to think about, but I, and my mom, believe that I have had POTS for years now.  The more we read, the more it sounds like what I have had to deal with for so many years. It is a huge relief to know what is wrong.

My cardiologist made sure he made it clear to me that this is a real disorder.  It is not in my head and it is completely NORMAL and UNDERSTANDABLE that I can't work or do much of anything right now. He assured me it will get better, but I have to remember that, regardless of what people think they know, I know my body and I am right: Something is wrong, it is real, and it is not all in my head. 
Oh, and this should completely resolve itself by the time I am 40. They don't know why, but it is usually seen in young women from teens through 35. 

So, it seems, the tunnel is very long, but I think I am able to see an itty, bitty light at the end of it. Hopefully I don't forget that when I can't always see that over the next few months. . .

And this seems to fit my mood today:

I can't stand ignorant people who think that things like Fibromyalgia, Chronic Fatigue Syndrome, POTS, etc.  aren't real and that it is all in our heads.  

They are wrong. 

Totally and completely wrong.

The First Few Months of 2011...

 . . . . .  have been all about my heart.

So, as I said, I started having problems with my heart rate again. In January and February I ended up in the ER at least five times.  I was having things like chest pain, shortness of breath, palpitations, dizziness, etc.  Needless to say, it wasn't very fun. 

Also, I didn't have a very good primary care doctor.  Sadly, when I turned 22 last summer, I had to move on from my pediatric nurse practitioner.  She was amazing and had gotten me through some very tough times over the years. I had been seeing her for about 10 years at that point.  I thought I had found my new doctor last fall... then I came to her with these heart problems and she says to me "Do you think this is just your depression?"

My (internal) response: "SCREW YOU!"  I know my body. I am telling you something is seriously wrong. And you ask me if I think it is just depression. NO!!!!!

Anyways, that was the end of that doctor. But unfortunately I needed to find myself a new doctor that would actually be my advocate and listen to what I was saying. 

Unfortunately more pressing matters meant that I had to be pushy and get in to a cardiologist as soon as possible. After lots of ER visits and a few holter monitors, I ended up at Abbott Northwestern Hospital at the Minneapolis Heart Institute.  I met the doc and they scheduled me for a cardiac ablation a couple weeks later, on March 17th.

I had another SVT (supraventricular tachycardia). As well as a probable inappropriate sinus tachycardia. 

In case you are curious: 

http://en.wikipedia.org/wiki/Supraventricular_tachycardia and  http://en.wikipedia.org/wiki/Inappropriate_sinus_tachycardia

Now, time for the surgery/procedure. I had an electrophysiology study and cardiac ablation. Basically, they looked at the electrical impulses my was producing, found the extra pulses that were making my heart race, and burned that part of my heart so that the impulse could not get through to increase my heart rate. 

They inserted catheters into my femoral arteries on both legs and one in my neck and snaked them up to my heart. The surgery took about 3 hours total and I had a pretty good recovery. It wasn't fun, but it did go as expected. 

No more SVT! 

Unfortunately, my heart rate didn't stay down as we had hoped. I also needed that new doctor...

In to my life comes Dr. Viera!! 

She is my aunt and cousin's doctor and she is absolutely wonderful! 

She listens to me and isn't afraid to treat me! 

So, all of this is why I have been feeling so down lately.  I feel horrible. I can barely do anything around the apartment let alone anything else. My heart rate is all over the place. I'm dizzy, nauseous, etc. None of which is a good time. Or makes me want to go out and do anything. I want to, but I physically can't. It sucks. But that seems to be enough rambling for one post...

Luckily I have amazing family and friends who are supportive, especially my mom and Ryan. They have helped me through so much and I am so grateful to have them in my life!

Thank you, everyone, for your continued love and support! It means the world to me and it is the only thing that has gotten me through the last year.

And just because we can all always use a smile...

Tea Cup Pig  :-)

The First 8213 Days of My Life

Well... here is my life story, blog style!

I have a great family! They mean the world to me!

I was born and grew up in Farmington, MN.  My mom did daycare when I was little, so I always had friends over! My dad was the city engineer. My brother is 10 years older than me, and my sister 5.  I was a loyal Farmington Tiger and a dancer at Brenda's School of Dance for 14 years. Dance was my life! I started when I was 5 years old. I think I had a fairly normal childhood. 

But, alas, when I was 7 I started having medical problems. And, today, that is one of the things that I still struggle with. But more on that shortly.

When I was seven I ended up with my tonsils and adenoids being removed. It was supposed to be same day surgery... but didn't go very well.  Then, once recovered from that, I started having problems where my heart rate would jump up to around 270bmp for no apparent reason. Luckily, we found out quickly what was going on thanks to an amazing pediatrician and the ER being so close to home at the time. I had SupraVentricular Tachycardia (SVT).

This ended in a cardiac ablation when I was eight. Luckily that went well, and I was able to return to a pretty normal childhood! 

I loved being a kid!

I loved playing outside! 

I loved dance! 

I loved friends!

I loved school!

And all of that continued through high school. I had some medical setbacks then though too.

Ovarian cysts and appendicitis which was just a minor bump when I was twelve. 

Unfortunately, when I was 13 or 14 I started having some trouble with depression.  Shortly after I started having problems, my cousin, Ben, committed suicide. (I will definitely talk about this more later on as it was a big part of my life and I still miss him every day)

But my main medical problems through high school was my depression along with migraines.

Although, despite that, I was the overachieving, straight A student who graduated with a 4.0 and honors in 2006.

Then I took my show on the road and headed to the University of St. Thomas to start my college career. 

And that is where I met Ryan...

While I was at St. Thomas I had some setbacks and hard times medically.  I got diagnosed with Fibromyalgia during my sophomore year... And everything that goes with FM.

Oh, and my adenoids regrew, so I had to have them re-removed.

But, despite having some pretty crappy setbacks, I graduated in May of 2010 with a degree in Mathematics and another almost degree in Education. 

Then, last summer, I had a really bad depressive period. I was also having such bad body pains, migraines, etc that I could barely function.  And this starts to get in to things I am still dealing with. 

I did an intensive outpatient program to help with my depression and anxiety over the summer at Prairie Care. 

http://www.prairie-care.com/

If you or anyone you know is struggling with depression and anxiety, this is a great place to start healing. 

Then, I had to deal with more of my physical symptoms, so I ended up doing the chronic pain program at Courage Center in October 2010. It is a great three week inpatient program!

http://www.couragecenter.org/ContentPages/chronicpain.aspx

And I thought, "Hey, I am actually starting to feel better."

Little did I know, 2011 had something else in mind for me. I started having problems with my heart-rate again. Going too fast for no good reason yet again. And this has been a huge part of all of my troubles this year. 

And more to come on the other 132 days of my life later.....

Fifty Five Years of Love

Yesterday was my Grandma and Grandpa Ernst's 55th wedding anniversary. They are the best example of living, laughing, and loving. I can hope for nothing more than what they had. (RIP Grandma)

All I really want out of life is to be happy. In order to do that I know I have to learn to live, laugh, and love, despite everything I have to deal with.  I have had a pretty eventful life to this point; A very interesting (almost) 23 years.  With everything I have to deal with, which I will get to, I have found it hard, especially this last year, to just be happy and enjoy life.  So this blog is going to talk about my journey to figure out how on earth I am supposed to be happy despite not getting handed metaphorical lemons. 

I hope some day that I can look back on life, with the man I love, and say, "We had a great life together,"  just like I know my grandparents can. 

I hope you guys enjoy following me on my journey.  I know I will be talking about ups and a lot of downs because I have found those the hardest things to overcome.  That is also why I think it will be important for me to do this. I know I have been focusing on the negatives, and maybe, if I can share those people can gain a better understanding of me as well as finding a better understanding of myself.