Normalcy?

The last 7 months that I have been given in my life could be more than I could of ever fathomed or hoped for from the depths of my hearts desires and imagination of the mind. I finally reached a balance and understanding with my health and when College began in August again my scholastics and social life fell into place. I was searching for the longest time I was just searching for normalcy and to be like everyone else. But it seems that I did not recollect the facts that I am not like everyone else. So to think that achieving the norm of what everyone else does would make me content and happy was a false illusion. When I began to start letting go of that longing to be like everyone else and truly accepting me for who I am and embracing the individual within me , that is when my life truly began . That is when I realized that , that so called “ Normalcy “ I was searching and longing for was nowhere to be found because everyones definition of normality changes in the view of the beholder. Normal by definition means conforming to the standard or the common type, usual or regular. Well as a human race every single one of us thinks and processes in an uncommon or different way . So Normalcy is nothing but an illusion we hold onto I believe due to fears within ourselves . We are holding onto this “Normal” facade because of personal fears but ironically when you examine the facts it is actually the facade itself that is holding us back in our fears and from becoming the person we are blessed to be and live the amazing life out there that our eyes are blinded by .

Once we let go of the “Normal” is when we can live our lives the way we want to and will make us happiest.This happiness keeps you at ease and makes those fears seem like nothing but little bleeps on the radar. Knowing with all of my heart, living by my individuality and not others facades I am happier and have a more fulfilled life than anyone could ever grant me . I still have fears and they may become overwhelming at times I do not let them take over my life and how I live. 

familiarity of a foreign land

     While I was laying in the solemn darkness of the evening the other night, I began to venture into a foreign land, one may call The depths of my own mind. Venturing through such an obscure setting that you would believe to find familiar considering it is your own mind yet discovering how something so familiar could be so foreign. Climbing over your thoughts rocky terrain jumping into the wading pools of ideals and free falling with the “ what ifs” that keep us in an anxiety ridden state . I was in a forest of enormous tropical trees with canopies extending miles and miles beyond the naked eye’s view. The ground went from a muck of mud to stone streets in Paris and suddenly those canopies were buildings and cafes. It was a wonderment to me how something that is part of us could create a puzzling and wondrous world that bewilders and intrigues you, while at the same time may frighten you due to the lack of the known. While my feet were pattering along the cold stone streets of curiosity I came across an old café that had a haunting charm. Suddenly I was in a pretty full shop with all walks of life around me meeting and greeting over teas , cappacinos , scones and sandwiches on baguettes. You could here conversations ranging from couples about their relationships , children fighting over the last piece of desert and weight obsessed women making sure that their salad dressing was ON THE SIDE! The deeper I ventured into this crowded place the brighter my surroundings became and the haunted appearance disappeared but the charm grew more. Suddenly, my path was interrupted by an old woman sitting in an enormous velvet orange wing back chair. She sat there straight up with delicate posture and huge bug eye sunglasses. She had a red coat on that enveloped her with black leggings , silver ballet flats and short black hair that had been slicked back to one side behind her ears. She glanced up at me and smiled very softly . She looked over at the wooden rocking chair across from her and told me in a booming tone , “Please sit , join me it would be nice to have the company.” Relieved to hear comfortable voice I agreed and joined this character on my mysterious venture. While her features were soft her nature tended to be more abrupt. This women intrigued me , she was so foreign yet it felt as if I had known her all my life . We began talking, she was telling me about the shop and how it came to be and how she had came here for years. Her quaking arm reached out for her tea and as she pulled the worn china away from her lips she pulled off  her eye wear and I was met by two large brown pools of eyes. She asked me something , “ How is it that something so familiar and close to you could be so foreign and mysterious ?”. I began to ponder this thought and before I knew it this alter-universe had melted away and I was back in my own bed in the solemn dark room.

Since this excursion my mind had been onI have been asking myself why is it that a place so strange could be familiar and comforting ? Is it because we are all strange and that is part of our alter-ego? Or perhaps it is because we are judging ourselves as strange when in reality it is our comfortable state and we get to caught up to slow down and face it.  

  Whatever it may be the strangest things in life sometimes are the things we draw on for some type of consolidation and comfort due to the lack of reliable comforting things in life. It is a mystery but one that may make you wonder about things in life the way it did to me .

Think about it 

LET IT SHINE

After many years of trials and tribulations of different treatments and medications we finally found a treatment that appears to be working and will make it possible to get off the prednisone. This new  treatment is a medication I take daily called Gleevec . It is a medication that they use for a specific type of leukemia patient typically , but they have found that it is helping people with vasculitis and other rheumatologic disorders. Finally hope and some success in moving forward with my life and living with a disease that you truly can live with and manage.

        

       In the depths of my heart I am elated , grateful , and filled with joy and hope. I have finally reached a point in my life where I can mange this illness and be a part of life . That has been one of my biggest goals , besides getting off of the steroids. I am reaching my goals . The golden trickled yellow shine of the sun has finally appeared in my life. You think I would be overjoyed and content yet there is still that uneasiness . Why is it that when things are going well there is still that questioning fear that manages to squeeze its way through and sneak up on us like a holiday or a dreaded birthday . I guess wherever there is light darkness' ominous way still manages to embraces us and our hidden fears.

    Things are good , life is good , it was cheesy but now thinking back to my days in elementary school in times of darkness and ominous suspicions we have to remember that song " This little light of mine , I'm gonna let it shine , this little light of mine I'm gonna let it shine , this little light of mine I'm gonna let it shine , LET IT SHINE, LET IT SHINE, LET IT SHINE !
      
        It could be interpreted in many ways and you may look at it or interpret it in a completely different way, but it is all about not letting that darkness take away our inner light within us. So in these times of doubt wether your life may be great or looking down try and remember to let YOUR LIGHT SHINE !! that is what will truly drive the darkness and fear away

Tools

When we we are faced with challenges in life we all deal with them differently . Some try to ignore these scary ideals and hope they will go away . Others want to attempt to hide from them , or an individual may use tools. When you think of tools usually what comes to mind are objects such as hammers, nails , saws , putty and other building materials .
      
      The thing is that in life you can not always physically see the hardships we are challenged with . Therefore the tools we use may not have a physical appearance either but that does not mean that they are not there and it does not mean that they will not work with out life's projects.

    Instead of putty or nails keeping things together we may have our families or friends supporting our infrastructure instead. A psychologist could serve as our hammer to pound things into our minds when we are having a hard time , especially when the emotions crowd up our vision of seeing the reality . They could also serve as a saw to help cut things down and clear them out. Other tools could be activities such as working out , doing yoga , baking , painting , crafts , and other things that help us remain calm and exert that excess energy and stress we have.

When you get the bottom of it though we are the contractors and builders of our lives . We are given tools and individuals along the way to help us with these proposals but it has to come from our effort , hearts , and mind to get things started . Just like all projects there will be slip ups or mistakes but as long as you use your tools you can conquer them .

   No one is perfect and things do not always work out but that does not mean that nothing good came from it and that there was no progress made. It is those small progressions which get us there eventually . Slow down and take your time ... remember , "Just keep swimming"


 

Not alone

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

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 ... 

• Cryoglobulinemia
• Giant Cell Arteritis
• Henoch-Schönlein Purpura
• Hypersensitivity Vasculitis
• Kawasaki Disease
• Microscopic Polyangiitis
• Polyarteritis Nodosa
• Polymyalgia Rheumatica 
• Rheumatoid Vasculitis
• Takayasu's Arteritis 
  Information and facts supported by the vasculitis foundation . To learn more about these strange and rare disorders you can go to vasculitisfoundation.org 

"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.