Wednesday, September 24

Decisions, Decisions

Today I was able to finally speak with my Cardiologist about the test I did last week (CPX test), which measures how well my heart and my lungs function while exercising. It turned out as I had expected: my lungs are fine, but my heart is moderately limited (this is in the middle of normal and severe). She did mention that it is more limited than even the Echo cardiogram showed, which I felt was not good news, and that it would be a good idea to take the next step of doing a cardiac catheterization and heart biopsy. Fun! My doctor did say that I am not the usual case- my blood pressure is very, very low. I have more fatigue than expected, and I cannot tolerate the prescribed medications. Of course she had to mention that there are risks involved; my heart could be damaged during the test, along with some other issues that I frankly tuned out after I heard the first one.
After I spoke with her, I began to get tied up in knots about making this decision. Questions like: should I put my body through this? Is it really necessary? Will they really find something, and if they do, can it be treated? After a few minutes of that torture, I reminded myself that I thankfully have an appointment with a new Cardiologist tomorrow afternoon. I was supposed to see her in October, but it turns out that an old friend of mine knows her assistant and was able to put a good word in for me. This reminded me that I am really being taken care of. This friend called out of the blue after six months, and then after a few minutes of conversation, it comes out that I am trying to get into see her Cardiologist at which point she makes a phone call to get me in sooner.
All of this shows me that I don't have to figure this out tonight. I also don't have to figure it out by myself. I just have to do what is in front of me and ask my Higher Power and the people I trust and care about for guidance and support. I also can go within during meditation and quiet time to see what is the best course of action for this situation. Yes, it is stressful to have Cardiomyopathy. It is also scary not to know the cause or the solution, but it is even worse to believe that I am not going to be okay and that I have no one in my corner cheering for me. Gratefully, I know that I have God and more people than I even realize watching my back, and all I have to do is relax and know that I am completely taken care of. Always.

Sunday, September 14

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.

Tuesday, September 9

Choosing to Focus on Wellness Using the Law of Attraction

I have been really diving into the new Jerry and Ester Hicks CD, "Money and the Law of Attraction," and it has helped tremendously in keeping me positive and focused on what I do want in my life. One section of the book talks about illness and why it is so difficult for some to come out of being sick once they have come down with an ailment. The main point that Abraham touches on is our habit of focusing on what we don't want. Talking about being sick, thinking about it, making it part of who we are as a person. The more that we do this, the more we perpetuate the illness- and that is exactly what I have been doing for the last four years. The book also mentioned that in order to become sick in the first place, one has to have denied their joy and the things in life that make them happy for quite sometime. Once again that rings absolutely true for me. The trick here is to keep focused on what I do want. To tell the story of how I want to feel, how I want to live. That can be a strange concept, when that is how you have come to think of yourself- always sick, always wishing for it to go away.
The other side of it is sharing how I feel with others. What do I say when they ask me how I am doing? I have found this to be the biggest challenge of them all, but I can really see how valuable it would be for me to make this part of my everyday life. When a friend asks how I am feeling I can say that I am feeling an improvement or that I am focusing on feeling good today. It is still not totally clear to me how to make this part of my normal routine, but I am willing to keep at it, because on the days when I do tell a better feeling story, and I do focus on what feels good, things work out beautifully in all areas of my life.

Thursday, September 4

National Invisible Chronic Awareness Week

Have you heard about National Invisible Chronic Illness Awareness Week? September 8-14, 2008 will feature 20 seminars via Blog Talk Radio, (4 per day, M-F) plus tons of people are helping spread the word by blogging about invisible illness issues. Do you get tired of hearing,"But you look so good?"or weary of the stares when you park in a handicapped spot? This is our chance to educate the public as well as remember we are not alone. Nearly 1 in 2 people in the USA live with an illness and 96% of it is invisible.So join the cause today! They have daily guest bloggers at, lots or prizes, articles, and it's a great way to make some new friends and attend a conference without ever leaving your home. The main web site is: .