Wednesday, June 29, 2011

Healing Cushie new to blogging..

Hello everyone out there.  I have read many blogs through all the time I have spent searching online for different answers to various questions that I have Googled.  I have finally decided to create a blog dedicated to my life as I strive to regain my life after dealing with a very rare and difficult illness to deal with, and one that I have dealt with most of my life.

I believe that it would best for me to start off giving you a brief history of my life and what I have gone through.  I won't give an extremely boring summary, but just so you can get to know who I am and what I have dealt with so far.  From an early age I dealt with being overweight, and also had walking difficulties.  Around the age of 6, I began walking with a limp, and my parents took me to different doctors.  I was told that I had a mild form of cerebral palsy and I was giving different exercises to do with physical therapy.  I hated doing these exercises because they made me feel like I wasn't a normal child.  I suffered a lot of struggles with my weight.  I was told that I was overweight because it was in my genes, which later I found technically was true, but I will get to that.  I always fought so hard to do whatever I wanted to do.  Sometimes I had to be at the bottom of the totem pole to be involved with things, but I did what I could to be involved with as much as I could.  After high school I moved to the area where my father was from and went to college there.  After college I had all the dreams of finding a good job in marketing management, however shortly after I started to not feel well.

The first symptom I felt was edema in my legs.  My mom was the first person to notice it, when it first began I didn't know what was causing it.  It became worse and worse, and at one point fluid actually was seeping from my skin.  I experienced more weight because of the fluid and it became more and more difficult for me to walk.  I went to a few doctors and was given diuretics, and one doctor prescribed a lymphedema pump.  None of these worked for me.  In 2005 I developed an infection in my leg and a possible blood clot in my lungs.  I was admitted to the hospital for over a month.  While I was in the hospital I finally had the beginnings of the answer to my problems, or the main answer.  They told me that I could have Cushings Syndrome, which in most cases is a tumor on the pituitary gland.  I was given numerous tests, by collecting 24 hours of my urine.  All these tests results were coming back extremely high.  Before I was sent home I had an MRI, which came back clean, however the doctor still thought I had cushings, and sent me to a neurosurgeon in Pittsburgh.

The doctors finally diagnosed me with Cushings and I had the surgery in January of 2006.  This same illness is what I had since was a child, and what I knew also killed my father.  The surgery that I had was successful, and I am in remission from Cushings, however the recovery has been tough.  I had most of the symptoms related to the illness, and most of them went away, except for the most difficult for me to deal with: obesity, edema, and weak muscles.  After my surgery I met some fellow "cushies" that lived in the Pittsburgh area and also chatted with some on a Cushings support website.  They told me about Growth Hormone Deficiency and how after surgery this can happen due to damage to the pituitary gland.  I had to go through numerous doctors to listen to me, however I finally found one to listen to me, and I was GH deficient.  I have been taking Growth Hormone injections for the past 3 years now, and it has been helping me some.

Taking the GH helped some but I really needed to start figuring how to get back to walking as I once did, and not relying so much on having a wheel chair with me all the time.  I really wanted my life back, but in some ways I was afraid of failure.  Part of me felt that if I didn't try I at least had some hope.  I knew that I was just making excuses, but I changed my frame of mind, mainly due to the people that I had in my life and others who I removed from my life.  For about a year now I have been doing physical therapy twice a week and I have been making some really big improvements.  Also in the past year and a half I have lost 150 lb.  With cushings I weighed over 400 lb and I am now down to 270.  I still have a ways to go, but I feel that I have come so far.

So there is a summary about what I have gone through in the past few years.  I have different activities that I have acquired through the years.  So I guess that with this blog I would like to share my physical healing along with activities that I am involved in, that are also helping to heal me emotionally, socially, spiritually, and other ways that I can heal.  My most enjoyed hobbies lately include reading, jewelry making, and listening to Japanese pop music as well as some Korean and American.  I guess that I will end here.  Until next time....