After all these years , I personally have finally come to terms with accepting that I have a medical disorder and have grown to be more comfortable with it and it being part of my life. I was afraid and did not want to acknowledge that their was something , I don't want to say "wrong with me" because there is nothing wrong me with, but I guess you could use the cliche word Different. Those of you who already know me know that I am "Different" ha ha ha , just playing but still it was very challenging and scary to accept that I have a medical condition that is life altering but I realized that it does not have to be a negative or bad thing.
It has taught me a lot and made me the strong individual that I am and has opened my eyes and other aspects in my life for myself , my family , friends and others in my life.
I have been telling my parents that I felt so alone with my vasculitis churgstrauss syndrome. It is not like these other conditions such as cancer or diabetes where every one has heard about them or you have met quite a few people who have experienced them. Wether it being them themselves or someone in their life. So I opened up and last week I joined two pages on facebook related to vasculitis awareness.
One is the Vasculitis Foundation page and the other The Vasculitis foundation support group for WNY.
Then Yesterday While I was on The support group page something caught my eye ,
"Violin for Vasculitis". There is a 23 year old young woman name Allison Lint from Cuyahoga falls who had Wegener's granulomatosis , a form of vasculitis and is now in remission . She has designed a program to raise awareness and funds for the vasculitis foundation. She will be doing this by a recital tour to all 50 states. You can read more about this by clicking on the following link http://the330.com/music/violinist-launches-program-2/
Following this a woman who was on this page saw my comment I had left Allison Lint and contacted me . This woman has the same vasculitis as I do , Churgstrauss syndrome . She also proceeded to inform me that she knows 40 others who are effected it and if I would like to meet them on facebook to let her know . Suddenly hope and comfort was fulfilling my soul , I AM NOT ALONE .
Even though you are told by doctor's and others in your life that their are others out there with what you have , you do not see it or hear from others who have vasculitis so it can feel a bit lonely . I have the full love of support of my family and friends so I know that I am not alone but it is nice to know that their are other individuals out there who go through what you do . And I finally have discovered that revelation . It is nice to know I AM NOT ALONE
Friday, April 29, 2011
Tuesday, April 26, 2011
What is Vasculitis ? The Month of May is Vasculitis awareness month!
What is Vasculitis ?
Vasculitis is an inflammation of your blood vessels. Vasculitis causes changes in the walls of your blood vessels, including thickening, weakening, narrowing and scarring. There are many types of vasculitis . Vasculitis is a rare autoimmune disorder that is found more among women in their mid to late 40s and 50s .
Vasculitis can be short term or chronic. It can be so severe that the tissues and organs supplied by the affected vessels don't get enough blood. The shortage of blood can result in organ and tissue damage, even death. In my case whenever I have these episodes I become paralyzed because it attacks and effects the blood vessels in my brain.
Some different types of vasculitis include Wegener's granulomatosis which causes inflammation of the blood vessels and restricts blood flow to the organs . The organs that this particular disorder effects are the kidneys , lungs and upper respiratory tract. The television series HOUSE actually did an episode on this medical disorder.
There is also Behcet's Disease , Buerger's Disease , Central Nervous System , Churg Strauss Syndrome which is what we believe I have , and ...
Thursday, April 21, 2011
"Why Because?"
Had an appointment in clinic today up at CHOC. I was not looking forward to going but I figured hey one step closer to getting off of steroids so eh it is ok. Instead I was given an epiphany as a gift.
While my mom and I were sitting there in the waiting area with the rest of the population ha ah ha, there was a little boy probably around the age of 8 sitting there quietly with his grandmother. You could tell that the little boy had been going through chemotherapy and on steroids; he had the puffy cheeks like mine.
For some odd reason I was mesmerized by this particular quiet little man. My mind had been racing a million "What IFs" a second and of my to do list of things I needed to get to, but every time I glanced at this child all of that buzzing was muted.
Mean while outside of "Isabella land" the chaos and busy bustle of nurses and other noisy patients was humming in the air and here still was this young child sitting so peacefully and quietly not stirring with any agitation. He glanced up at his grandmother and she was telling him that they were going to have to wait a little longer than they expected. Right then I knew here comes the break down, no child wants to be sitting hours in a doctor’s office on a day when they could be playing. Instead he shrugged and all that came out was " Why because?”
This made me smile, a taunting question that we all have been asking since we were old enough to speak and to this day we still ask. Just maybe the circumstances around it have changed a bit. Instead of asking, "Why do I have to clean my room or why can't I have anymore chocolate milk?” We are asking why can't I lose weight? Or why is that person succeeding in work farther than I am. Why is there cancer? Why is Donald Trump running for president? He He
WHY DO I HAVE VASCULITIS?
The truth is there may be no definite answer for any of this and it is challenging everyday in life to deal with all of these things but it is how we choose to deal and look at it. It is not always easy and some things are crueler than others but there is always a light there. It is that light that helps keep me going and reminds me of the good things in life. As trying as it can be it is when we slow down and remain calm like this young boy did those lights grow brighter, are easier to see and help us get through our trying challenges and difficult times in our daily lives.
Tuesday, April 19, 2011
Small summary of an inspiring journey
I was diagnosed in 2006 when I was 14 years old when I began to have excruciating headaches, was extremely sleepy, unable to write and was dragging my right foot.
While I was at the doctor's office collapsed and was rushed into the hospital to have an MRI. The scan showed swelling in the brain and a perfectly round dark mass in the area where all of your motor skills and bodies functions occur.
The doctors believed that it was a brain tumor and before I knew it I was being taken to have a brain biopsy. After four long years previous to this event we finally had a diagnosis. It was not cancer thank Heavens! I was diagnosed with Eosinophilic Vasculitis.
I also have an over active immune system and when it becomes too active my eosinophil cells attack my body causing inflammation in the brain. The inflammation becomes so severe that it compresses the blood vessels in my brain and cuts off oxygen and circulation. Because of the lack of oxygen and blood flow it has left me paralyzed on the right side three times and completely paralyzed once.
I was able to regain my bodies functioning and mobility with intensive rehabilitation physical therapy; alternative methods and this may sound corny and the power of prayer. I was left with a slight weakness and paralysis on the right hand side. I know have a slight gait in my walk and taught myself to be left handed dominant now because I have a left over tremor in my right arm that makes it to difficult to write.
A couple of years went by and I had a smaller one of these episodes but other than that things had been going fairly well.
Then in October of 2010 my old symptoms returned and when the doctors performed the MRI it showed that my brain's mid line shifted into the right side of my brain and I had severe swelling that caused there to be no space between my skull and the brain. My brain was being threatened with severe brain damage, so my parents were forced to come to the difficult decision to place me into a medically induced coma. After 4 days they were finally able to calm the inflammation down with multiple therapies and treatments. When I finally regained consciousness I was completely paralyzed and had machines helping me breathe and monitoring the pressure in my head.
The strong and determined individual that I am I would not let that stop me. With determination and the love and support of my family and friends I was able to recover. I am still here and living life to my best capability and am extremely grateful for that.
There is no definite known reason why this occurs but I strongly believe that things in life happen for a reason and for whatever reason why this has occurred in my life it has made me a stronger, more compassionate and overall better person and I would never trade in these life experiences I have been through.
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