Celebrating Me, Myself, & My Heart

Tomorrow Is Go Red for Women Day! WEAR RED!!!! AND SUPPORT WOMEN EVERYWHERE!

It's weird to think that I actually really am a part of that movement in the sense I'm certainly celebrating myself and acknowledging that heart disease has affected me in so many ways. (Not only bad though) I guess I've taken a better appreciation towards life recently and I realize that life certainly may
have its ups and downs, but all the bad instances make me appreciate life so much more.

Yesterday I went out and just had a good night. It was nice to just have a change of pace and to tell you the truth, I haven't felt more like myself than I did yesterday, in months. It was as though I hadn't even acknowledged having a disease or how much its changed me or any of the other problems in my life. I didn't think about my upcoming surgery or anything like that. I just enjoyed being out and about. I feel like I haven't been this person, the confidence, the happiness, the putting myself first, in a long, long time.

It's really nice just to be for a change. I did have my moments of stress though throughout this week but, like I mentioned in others posts, walking/working out seems to be a really good outlet. I walked three miles on Tuesday, over four miles yesterday, and today, I walked another three miles. I didn't get to the amount I originally wanted to do today because I was distracted by a phone call. That phone call led to another and by the time I had been able to get back on the treadmill, it actually had shut off! Kinda a little upset cause I lost all my information without getting a chance to record it, but I guess I can be okay with knowing I did well over three miles.

The phone call was of course calling my doctor. Unfortunately, the final results of my pulmonary function test are still not in! Its infuriating because I've been calling all week. The more the results are delayed, the longer its going to take to get my surgery scheduled. I just want a date! And it feels like every week goes by and its just being prolonged even more.

Life is always ->
Yesterday they said they would have it today. Today they said by the end of the day.. Tomorrow.. let's see... I'm waiting to yell at the doctor. But, like I said in the last post, the frustrating part isn't always my health, its the healthcare providers. I'm pretty sure the secretary, at the very least, felt bad because she knows I've been calling all week. And there isn't anything she can do. Being a secretary myself, I've dealt with people just like me who are frustrated and in that sense, I do feel bad knowing secretaries always get the brunt of it.            

With any luck, tomorrow I will finally have results! After.. I get to call the cardiologist and probably play phone tag well into next week. Too bad, I was really hoping I'd have it during my birthday week.

In any case, I suppose I have some more time to enjoy this newly regained feeling of being empowered, in control, and being myself. (something I haven't felt in ages!) Whatever it was, last night did me wonders, as did the rest of the week.

Sometimes you just have to let loose and remember that not everything in life is your control. The best thing anyone can do is just go with the flow and enjoy the ride. 

I found this quote and it pretty much sums up my life right now:

Life isn't about waiting for the storm to pass, it's about learning how to dance in rain!

 <3

Jess

Living Life to the Fullest

The tests are over! ..I think! The pulmonary function test was a lot simpler than I remember. Last time I'm pretty sure they were telling me to do this test after having a stress test.

I can't run.

That's been my entire life. So to try and tell me to exhale while trying even catch my breath, Yeah, not a good plan. That test always failed. This time it was so much easier because it was me breathing normally and though I still had a little trouble, it wasn't nearly as long as the last time. Not to mention the guy who was giving me the test was extremely entertaining and I wish I could be as blissfully carefree and happy as him.

As always the CT scan was arms raised and breathe in and out. I can always know what to expect between that and MRI's.

I'll be thrilled if tomorrow I can call up my pulmonologist or even they call me, and tell me my results. After, I get to call my cardiologist and hopefully will get a surgery date within the next two weeks. I feel like the system they have for communicating is a little bit flawed though. As a patient, shouldn't it be both of the doctors coming to me rather than me going to them? I already have the work of going to the city for testing rather than having it done in a local hospital that would seem less than adequate in their eyes.

Sometimes, its not just my health that's frustrating, its the healthcare providers as well.

However, if life was as simple as having everything go perfectly, it wouldn't be worth living, would it?

I've done a lot of soul searching in the last week, more yesterday than anything and I've finally decided to start enjoy life a bit more.

I feel like life has become so serious in so many aspects.

And I'm just sick of it. 

I want my life to be fun. I want to wake up in the morning and not know what to expect, but to expect that it will be a good day.

I'm living on a day to day basis and I'm not doing it to the fullest. If I had been, it would be so much better. I can't know the future or who will be in it. I think for the time being, until my surgery, I'm going to try and enjoy it a bit more.

I've already made plans to have a bit of fun every day this week and it ends with a weekend in the Poconos.

Before being cooped up in my house, I need to take advantage of all the freedom I can. One of the few good things that did happen in 2012 was that I got a car. I hadn't driven since I had my accident four years ago. I had some test drives within 2012, but to drive the amount I have been wouldn't have happened without my car. It's one of the most empowering and liberating feelings I've had in a while. FREEDOM. At times I feel like I'm back in my senior year of high school and just starting to enjoy being on my own again. It's been pretty awesome and its probably going to be one of the hardest things to let go of during my month, or two, or however long it will be, recovery.

I wish I took advantage of getting a car sooner. It was encouraged by many around me but, I let the fear of what happened overtake any thought of actually getting a car and getting back out there. It's something I regret not doing sooner but, I'm a firm believer in everything happens for a reason. Either you can take the situation and grow from it, or you can just let it keep you down. I finally decided to grow from it and I couldn't be happier.  

I just want to get the surgery done and move on with my life. I don't want to keep having this hold me back.

My health is only a chapter of my life, not my entire story.

They say surgery like this changes a person. Its weird, but I think I'm already seeing changes pre-surgery. I've been reassessing my goals in life and what I want out of it. I want to do everything I can to be healthy and stay that way. I've dropped a decent amount of weight within the last two months and I couldn't be happier.

I'm not only more confident on the outside, but I'm becoming more on the inside as well. I've been expanding my wardrobe a bit, maybe a little too much. However, it's wonderful to go shopping and not believe if I was a few sizes skinnier, then I'd be able to wear something. As a young woman, I don't want to say confidence comes from looks but, for someone like me who has struggled with the fear of working out would hurt or kill me, I've certainly overcome a lot within a short span of time. My confidence within that dark period went down and I'm gaining it back now. Perhaps I'm pushing myself a bit too much but, it feels nice to actually believe I can. I still have my limits, however, it was encouraging being able to walk for almost three miles today. I definitely felt invincible, something that I've only felt rarely.

I hope that feeling of being able to accomplish whatever I want, not only with working out, but as life continues. I have put my life on hold, but once I'm out of recovery, I will be jumping into life full force. I'm planning on getting two more jobs and hopefully taking the praxis right away so I can start school in the summer. My goals for life after my health are expanding at a rapid pace and I cannot wait until I can start to pursue them. 
     
All I can say is, I'm taking advantage of what I can do now, rather than wait for the time when I can't do anything. This week should be a great week filled with some good memories and times that will get me going again when I'm recovering.

Below is a Hot and Sour Soup - Heart Healthy Kind

Keep on getting healthier but don't forget to celebrate a bit too!

Be proud of the choices you make and know that others are proud of you too.

Life is too short to chase anything but your dreams!

<3
Jess

Exercising My Butt Off

So, I've been pretty good about exercising every other day now. After meeting with the pulmonologist last week, the entire day gave me good reason to. Not so much that doctor, but meeting with my cardiologist. He was quite ridiculous. I had to wait an extra hour and a half to see him for a five minute conversation.

Good news: ALL OF MY ISSUES CAN BE SOLVED IN ONE SHOT! YAY!

Bad news: Surgery is most likely going to be near or on my birthday.

Two people have now said that if I have the surgery on my birthday, I would be reborn again. Kinda cool thought I guess and something to think about if it actually does happen on my birthday. Somehow, my intuition feels like it will be right around there.

My intuition has been pretty spot on which kinda scares me but I guess in a lot of cases it's too good sometimes. I want my life for the next few months to be some of the best months of my life thus far. My friends are there but sometimes, I know they give up on me and I wish they wouldn't.

It sucks not having some friends there when you need them most and it sucks even more knowing that you've pushed them away. At the end of the day though, are they your friends?

I find the best way to deal lately, is just to go for walks or workout because I need to distress somehow. Its funny though, when I'm not intentionally trying, I know I'm actually eating healthier too than I once was. Or less at least. Not quite sure. I did avoid the apple pie though!

I'm hoping that those around me will continue to be optimistic and know that change in me is imminent. I don't think life will be the same after surgery and not just in the sense of physically, but mentally as well. I already know that I'm not taking life for granted nearly as much as I used to. Nor am I taking granted the people who are in my life. For every single one of them putting up with me, I am beyond grateful and I really hope they know how much I love them. My world has become about the people I love and I don't think I would have it any other way.

Life isn't worth living without it.

Life is going to get better. I just know it and I know all those around me, even though there are some dark days right now, there is light at the end of the tunnel.

Keep on moving and enjoying the days together with your loved ones as much as possible.

   
 Enjoy life and make sure you take time to enjoy the beauty of whats around you!

Attempting to get into shape and hoping anyone who is reading this, will try to do so too!

<3
Jess

Time Stands Still

Medication has never been something I look forward to. I have no choice to take it and feel hopefully better from it. However, when the surgery is done, I'm optimistic that I will no longer need my beta blockers because my shortness of breath should be gone.. at least for a few more years. It's unfortunately the only medication that can help treat my cardiomyopathy and eventually I'll have to be put back on it.

Having had an overly stressful weekend, I didn't sleep nearly as much as I should have and yesterday I felt like I was walking around on two hours of sleep. Though I took my beta blocker early enough, because of my lack of sleep, I had chest pain for the entire day. I even woke up with some this morning. I still feel worn out and its disappointing because I really wanted to workout today. (Working out for me means everything at a slow pace but everyone needs exercise, no matter what your limits are, you still have to work with them)

Instead, I'm working on some long lost hobbies that I haven't done since high school. When life was a challenge, and it always was, I used to write and read all the time. College kind of made me forget about both. I didn't have time for either and once I finally did, my ambition wasn't really there. After having more time off than I should, and waiting on a date for surgery, I'm taking it upon myself to start going back to things I used to enjoy.

And I keep on gaining new hobbies as well. I've mentioned cooking in other posts before and it seems like it's becoming something I'm doing more regularly. Since my sister was a bit busier than she had expected, I ended up making turkey lasagna for dinner last night. Overall, whole wheat pasta, low sodium tomato sauce, some spinach and low sodium ricotta cheese was pretty good. While I changed some of the ingredients, I think it actually made the dish taste better and a lot less bland. I'm cooking recipes from a heart healthy cook book and its not always particularly appetizing.  

As you can see, not much left and for my family, that always means it had to have been at least decent if not a lot better.

I feel like I'm stuck in this standstill of time. But, I'm restless to just start enjoying life a bit more. If all of my trials and tribulations have taught me anything these past many months, its that I can't just wait for life to happen. I need to start doing something now and not regret.

I'm trying to learn more about myself and gain more patience with myself too. I have to accept that things won't happen overnight. I also have to trust in the people around me. I need to understand that at times, I might not be very easy to be a friend to because I come with a lot of baggage. I've never claimed to be perfect and the mistakes I've made, I hope I've at least owned up to most of them. I want to be forgiven but I know I need to prove that change is possible and will happen before forgiveness can be granted.

I can only grow as a person and hopefully everything will go up from here.

When life gives you lemons, you make lemonade.

Still having faith in everything working out and hopefully that people haven't given up on me yet either.

<3
Jess 

Heaven was Drinking Tequila when they Rolled my Genetic Dice

Well, that appointment was frustrating. Yes, I need surgery, but I already knew that. The only thing that was really accomplished that day, was getting a confirmation for surgery and the need for more doctors to be contacted and involved. I have to see a geneticist and a pulmonologist. Surprisingly, the geneticist is who I primarily need to see. Why? To see if there is any connection between diseases. I realize I haven't seen one in at least twenty years, but I'm not quite sure if it's necessary.

More doctors. More tests. I get it, I'm the guinea pig because my case is rare. Doesn't make it any easier. While I want to know about all the connections between my diseases, I'm actually okay with just taking the doctors word and taking all the diseases as a grain of salt. I'm so close to having a solution that I just want to skip everything in between and go straight to the recovery period.

Life only seems like it's partially begun and I really just want to get through this to actually start living.

I was in the hospital this past weekend for work. Because I had to get a nurses attention, I basically had to run across the floor. After, I didn't feel too good and I have to admit, I want to believe that after getting this surgery will help tremendously and I can actually do a short jog without having any repercussions. However, yes the cardiomyopathy limits me, but I certainly believe that I will be able to hike and be outdoors without as much limit as I have been within the last year. I also think I will be able to get into better shape without as much deterring me physically.

This is from two Novembers ago in the Poconos on the Appalachian trail. I want to not only be able to do this again, but exceed what my limits are believed to be. 

My future seems to be taking forever to get here, but I guess until then, I should enjoy the ride and trust that whatever will happen, will happen in time. I'm hoping to have the surgery, at earliest, at the end of the month. 

Keeping the faith that everything will work out and that this year will be one of the best yet.

<3
Jess

New Year, New Me

Well, as cliche as that title is, (it sounds rather like a commercial for losing weight at some gym or going on some diet) I really feel like this is going to be a good year. Perhaps its because the awful 2012 is over and I can finally say and fully believe, that life is looking up. I'm scheduled for my follow up appointment after the cardiac cath tomorrow and though I can only hear the outcome being open heart surgery, I'm kind of excited that doctors have finally found the reason behind my shortness of breath and can fix it. 

A year. That's how long this has been going on. I'm upset that it was a terrible year on many levels but, I just can only hope it can go up from here, starting with finally having answers and also building a better me. I feel like this entire time has been a test of who I am and what I would have become had I not stepped out and realized some of the mistakes I've been making. I'm hoping that this year is full of second chances, growth as an individual, and just starting to build my life, not necessarily over but starting life after college and pursuing dreams. I want to go back to the individual of strength and no fear. My health doesn't control me and I really wish it I hadn't let it for so long.

I just want to get the surgery done and have a speedy recovery. Right after, I'm hoping to start substitute teaching and then hoping to start school again for my masters in my teaching. During my recovery, hopefully I'll be studying for my praxis exam.

I don't know what to expect in the future other than know that I have a great support system who will always be with me, regardless of my decisions.

One of my good friends said this to me and I can only believe that this is the way I should live daily.
"So my dear friend, leave all your worries behind and focus on the wonderfulness of not knowing and the thrill of what could be."

Whether I'm ready or not, the future is coming and I am welcoming it with open arms. 

<3
Jess