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....

1 comment:

  1. I'm so proud of you for getting this all out there and realizing that writing can be a great outlet and tool in healing! You've made it this far- it's all downhill from here chick! You've got ALOT of people in your corner cheering for you and supporting you. you're going to beat this nasty Cushings and go on to enjoy life again! <3
    -Lisa Roberts