Oh, What A Relief!

I wanted to let you all know that after much thought, prayer, and consideration, I have decided not to have the defibrillator implanted at this time. I also came to the decision to come back and review my options in six months- that way I haven't completely closed the door on this issue.
I have to say that it is a tremendous relief to have this taken off of my shoulders. I hadn't been sleeping, and I found myself crying a lot over the idea of putting a foreign device into my body and having to rely upon western medicine for the rest of my life. It just didn't sit well with me at all! I am so grateful that I am now able to move forward into the new year with my focus being on health and growth, and not having to spend more hours in hospitals and doctor's offices. Some may be afraid that I will just drop dead without it, but honestly, my intuition is telling me that I am going to be just fine. I really do believe that what we choose to focus on increases, and if I am looking at my poor health and what the doctors have to say, I will be stuck in this place for the rest of my life. On the other hand, by choosing to look at how fantastic my life can be, how good it feels to be well, and how amazing it is to grow and move forward, I can achieve these desires and leave the sick girl in the past where she belongs.
Before I end this post I just want to wish you all a healthy and happy new year- we all deserve a fantastic 2009- and I hope that we can all heal, grow, and prosper together!

Time To Take A Look At My Heart

Well, its finally here. Tomorrow are my two tests at UCLA- the cardiac catheterization and heart biopsy. To be honest, I don't know what makes me more nervous: having my life disrupted or hoping to God that I didn't go through one more test for no reason. As my personal way of dealing with this stress, I have made myself run around all day long trying to prepare for the "event," and for the days following. From what I have read and have been told, the recovery time is about 24 hours, but I know from past experience that the stress alone can set me back for a few days, so I can just imagine what all of this will do to me. Having just said all of that, my job is to push these fears and projections aside and focus on the fact that it is going to turn out beautifully. I will show up at the hospital; they will do the tests; I will stay in recovery for a few hours; then I will go home and rest. End of story. It doesn't have to be dramatic or scary- I can actually choose to go with the flow and have faith that everything will be okay. I really believe that deep down I don't like the idea of my heart being messed with, and I know that having a biopsy taken of it just isn't sitting well with me. If I were my heart I wouldn't like being invaded with a bunch of scopes and surgical tools! My hope is that my body will be accepting of all of this, and that the results will more than make up for any stress or discomfort that these procedures may have caused me. Please keep me in your prayers and send good thoughts- I can use as many as I can get!

Self-love

The last few weeks I have been in waiting mode- trying to live my life and not think too much about my upcoming tests on my heart. I have to say that it has been an interesting time; I have felt much more hopeful, but at the same time I feel like everything is on hold until I get the results of the cardiac catheterization and the heart biopsy. I have this constant feeling that I should do more, be more, grow more; but in reality I have to take things one day at a time and do the best I can.
I am finding that being my own worst critic is not helping my health or my emotions one bit. It certainly isn't allowing me to grow spiritually either. If I am feeling critical of myself, then I am blocking God's love and God's will from really coming into my life and making it fantastic. Heck, I would be happy with an improvement, we don't have to get to great just yet. I really can't complain because I have been taken care of completely since all of this began in February by having the best doctors, money to live, and emotional support from my friends and family. What more could a gal ask for?
Another thing that is becoming clear to me is the importance of self-love. The more I beat myself up, the more I make myself sick and unhappy. I know that many people have problems loving themselves, and I find it hard to understand why we feel this way. Is it caused by our home environment growing up? Does it stem from school or the media? How about from society as a whole? My guess is that it's a combination of all of these and it's our job to let go of this old programming and remember the truth: we are all amazing people- whatever we have accomplished today is enough. More than enough. I am doing what I can to remind myself that I am here for a reason, and that God doesn't make crap. I read in a wonderful book that I should look in the mirror everyday and say to myself "I love you, I really love you." I must admit that when I first started doing this it felt very uncomfortable and silly, but the more I do it, the more I am starting to realize that I am worth loving. Period.
So, I thought I would share this with others who may be struggling with self-love and self- acceptance in the hopes that they too can begin to cherish the most important and wonderful person in their lives: themselves.

Cardiac Catheterization

Last week I went to see another Cardiologist and it was a great visit, but it turns out that she does not specialize in heart failure like my current doctor does, so needless to say I felt a little bummed out. She did, however, give me a lot of great information:
- She believes that I am currently seeing one of the best doctors there is for Cardiomyopathy
- She agreed with the cardiac catheterization and the biopsy as the right direction for us to go
- I am indeed a unique case, and a visit to a new Rheumatologist is probably a great idea
- That if it comes time for a defibrillator to be implanted, I should compare doctors and hospitals (hers being one of them)
- The chances of my needing a heart transplant are very slim- I am at stage 2-3, and I would have to be at a stage 4 (Whew!)
-If nothing improves in the next couple of years, stem cell therapy is a great option

Even though I felt like it was almost a waste of time to see her (just because she couldn't be my new doc), I did leave the visit feeling much more confident and certain about my current cardiologist and the upcoming tests I have chosen to undergo on the 24th. As scary as the tests seem to me (once I really think about it), I am hopeful that they will shed some light on what is really going on with my heart and my body. Wouldn't it be great if the mystery was finally solved? I have learned, though, that I can't just put all of my eggs in one basket and when it doesn't pan out I feel deflated and depressed once again. I can only do the next indicated action, which is to take care of myself physically and emotionally, show up for the tests at the end of the month, and then go on from there. I also have to remember to keep working on the emotional issues that most likely caused these problems, and I am committed to doing whatever work I can to improve my health- on all levels.

Acceptance and Faith

On Friday I went to see my Cardiologist for an Echo cardiogram and to check in with my doctor. I was quite happy that I took the step of asking someone to go with me; in the past I have usually gone alone, and for some reason just driving to the appointment was enough to bring me to panic filled tears. On the way to UCLA, I made it a point to remember that God is always with me, and that whatever the results of the test were, I was ALWAYS being taken care of. As with the last three tests, nothing had really changed with my heart. My Cardiomyopathy had not improved, and I was prepared for my doctor to basically give up on me because I have been unable to tolerate the medications, and I seem to be a rather challenging case. In fact, I was so sure of this that I have an appointment to see another (Cardiologist #4) in October. Well, as it turns out, I was way off base as to how the conversation would go with her. I was actually projecting quite the opposite of what was said - what happened instead has given me more hope than I have had in a long time.
Suddenly, I feel like my doctor is very interested in finding out what is going on with me and we talked about several tests that she thinks I should do in order to figure this whole thing out. The reality is that I am not the average Cardiomyopathy patient; my blood pressure is very low, my heart is stiff and not weak, and I can't handle the meds. I am also quite young (which people love to point out to me). Additionally, she suspects that there is something muscular that may be going on in my body that is contributing to my weakness and she is hoping that the tests will help us find that out. I may end up going back to a Rehumatologist in the future to see if they can find anything out too.
As scary as some of the tests are (the first test is done while riding a bike and wearing a mask that will help to monitor several aspects of my body's function, the other two tests will be done at the same time: doing a biopsy of my heart and exploring the arteries and areas surrounding my heart for possible blockages and fluid that may be behind my heart) I am really glad that I haven't come to the end of the road of finding a solution. I know that I have said that I don't need to try and figure this out, but at the same time it would be nice to know how to treat this, and exactly what will help me to get better once and for all.
I still plan on seeing the new Cardiologist- I don't feel that it will hurt to get another opinion, and from what I hear she is also a fantastic doctor that specializes in women's hearts and is open to natural treatments such as acupuncture, which I feel very strongly about and I know is what will truly help me to heal and move on from this. I am choosing to stay positive and in the faith today and not get caught up in how much I don't want to do these tests. For all I know, I won't have to do the biopsy, but even if I do it may just give us some long awaited answers and solutions to this life altering condition. It helps to know that God is with me through all of this, and that family and friends are there to support me- without that I don't know how I would deal with even half of the issues I have been going through. To say that I am grateful is an understatement; to tell you that I am blessed is the absolute truth; to remember that I am always okay is essential.