~My Personal Story Part 2~

(this is as my lips were starting to swell, but believe it or not they got twice this size)

Last month I did a post talking a little about the health issues I have lived with for the last five years. The response I received from all of you was incredible and touching. I received not only comments left on the post, but dozens of e-mails. I realized that although I love my Blog to be upbeat and be geared to Design, Decorating, Antique Shopping and my Pillows as well as featuring my Retailers and friends of mine in the business, I am just a regular person who has many serious health conditions. Since the response to my first post and the sincere concern from so many of you, I felt that I will share some of what has been going on the last month and a half. It has always been extremely difficult for me to open up to people because it not only makes me feel vulnerable, but I also don't want to burden people with my problems.

For those of you who are new to my Blog and did not read my first post, here is a little of what has gone on with me the last five years. I have quite a few rare swallowing disorders and have had four throat surgeries, I also have issues with my immune system. I have about eight Specialists that I see. I went for a High Resolution Manometry test, which is basically where they put a tube down my nose in to my stomach and it takes pressure reads and shows certain conditions. What it showed was that my motility along the length of my esophagus is that, basically of an elderly person. There is no drug in the United States that I can take because it has become illegal due to it causing cardiac problems. The test also showed a congenital defect of my aorta in which my aorta is pressing against my esophagus causing it to curve and not allow food to pass down. I also have had issues with having no feelings in my hands and arms and my Doctors think that the pressure from the aorta is also pressing on my valves which branch out from the aorta going to my limbs. I have had asthma for years and about four and a half months ago before my last surgery I was having a lot of breathing problems and of course I thought it was my asthma, but now they are telling me after having a CPX test last week which my Pulmonoligist sent me for, that what I thought was my lungs is actually my heart.

(not very attractive pictures, these are all part of the CPX test)

My heart is pumping at below half of what is normal for my age. So really what it means is that when your heart is working that hard, you feel short of breath because it's working so hard to keep up. During the CPX test which was also supposed to be with ABG (arterial blood gas) they were unable to put the catheter in to my artery in my wrist and after trying six times, they decided there was no reason to keep me in that much pain because my arteries were just too thin and the last attempt they did get in to the artery, but hit a nerve so it was unable to be done. After my test is when they told me they saw a problem with my heart and then they tried to get a regular blood sample through my vein and after four attempts they were unable to get any blood. They said my veins had collapsed. I also went and saw the Chief of Head and Neck surgery who placed a camera in to my throat and said that my Larynx is inflamed and irritated and needs to be checked one a year to make sure I do not develop esophageal cancer. I now need to go for a stress echo test and MRA and a different type of barium study (which I have had five of) this one is to show the function near the aorta so my Doctors can decide what needs to be done to fix it. I ended up in the ER on Monday because I had the CPX test on Thursday and woke up Friday with tiny bumps all over my lips and by 4:30 Sunday morning my lips had swelled up and with my swallowing and breathing problems I felt that I was not getting sufficient air. The Doctors there gave me some medication. By Tuesday they had doubled in size from the day before and my Son came in my room and started laughing at me because I literally looked like a fish. Luckily I have a good sense of humor and that is what gets me through all of this. I did look pretty ridiculous, like I had a bad lip enhancement injection. So now I am on steroids to help them heal. It ended up that I was allergic to the chemicals on the mouth piece I had during the test.

I am a pretty unemotional person, meaning that I care deeply for people, but I deal with my issues for what they are. I have never asked why is this happening to me and I don't have anger for what I live with. We all have or Know someone dealing with some sort of problem and I just feel that what's the point of feeling sorry for myself. That's not what I want my children to see everyday. They see a Mom who has a smile on her face (most of the time) and I just go along with things the best I can. I am unable to eat normally and I get tired pretty quickly, so we are unable to do big family trips, but I think what matters most is just being together, it doesn't matter where... I am not a big crier except when I think of not being here to see my children grow up. That is the one thing I can't let myself think about. I am a very spiritual and positive person.

One of my closest friends of twenty years passed away two weeks ago and our last conversation was incredible. She felt as lucky to have had me in her life as I felt to have had her in my life and she believed that it was destiny that we met and became lifelong friends.

This last almost five months I have become more spiritual than ever before and joined SRF which is part of Lake Shrine. It is all about what positive thinking can do in our daily lives and how it helps us to be calm and deal with whatever we are faced with. My Daughter started going to the Sunday School class and when she was done she came out and said "Mommy, I feel so calm now" They do a lot with meditation, but not the "typical" types you may think of. Anyway, for me it has been a great source of healing my mind which after losing the friendship of my one friend and the death of another and then facing all of these new health conditions has been exactly what I need.

I know so many of you say to me, you seem to have everything going for you, and I felt this post was important because things are not as perfect or nearly close as one might think. My issues are a daily thing.

I like to keep busy with my business and now with my Blog because for me the best way to stay focused and positive is for me to stay busy. I never want anyone to feel bad for me. We all have our own issues and this just happens to be what I live with. I hope that by you reading this, if you are in a similar situation, dealing with an illness or something troubling, to always remember to try and stay positive. Bad things just happen, but it's all in the way we deal with these obstacles that make us the people we are. For me it has given me more strength that I ever thought possible.

I hope you all have a wonderful day!


Here is a link to my first post:

http://agardentoremember.blogspot.com/2009/08/my-personal-story_14.html