Tuesday, May 01, 2012

Vasculitus Awareness Month 2012

In honor of this being the first day of May and the month designated as Vasculitus Awareness Month, I'm going to turn this post over to my sister Jamie for a guest post on her experience of living with one of the Vasculitus diseases.

Those of you who follow my blog might remember the month long vigil we held in her ICU room in the summer of 2010 when we almost lost her.  Or you can go here and here to read about it.

Vasculitis diseases are autoimmune disorders and they come in many flavors. Jamie was finally diagnosed with the flavor Wegener's which causes inflammation of blood vessels in the nose and throat and organs and causes inflammation in the joints which is quite painful.  She has developed scar tissue in her throat that necessitates dilation surgeries every 3 to 6 months.  Last year during one of those surgeries the doctors had to install a long term trach.

With that intro I now turn you over to Jamie but stay tuned at the end for an informative video about Vasulitus.


 I have always been relatively healthy, breathing, running, jumping, walking the three miles around lake Sacajawea in my home town of Longview, Washington. walking a mile to school and back daily.  But in the winter of 2008 that all changed for me. I woke up in pain, my knees hurt to where I couldn’t walk to the bathroom, so I called an ambulance and then called my brother.

Then getting the dreaded cortisone shot in my knee and then my breathing problem began. Everyone thought it was asthma, who would have thought I would be here and have a disease so rare? GPA (Wegener’s)!  That started me on a journey to discovering what strength, endurance; courage truly looks like when faced with a battle.  Especially when it is your own life you are saving.

I have experience thus far in a 3 year period, numerous surgeries, 2 near death experiences, loving support from family and friends from whom I never would have thought I would receive it, learning to communicate effectively with doctors, nurses, family, and friends in order to be heard, not having a voice to speak in order to get what I needed, having a care provider come in 5 days a week to help me to maintain my house, losing a friendship, gaining an old friend I thought I had lost, meeting new and amazing friends who too have Vasculitis disease, losing my ability to drive myself, gaining a furry friend who loves me unconditionally no matter what I look like, sound like, or what mood I am in. 

 And most importantly I have learned that I am stronger and can face obstacles with fear, but still can be calm and get through it anyway. 

I am not some woman that does not feel the tinges of anxiety or nervousness when faced with challenges. I do feel that way; I am just choosing to courageously face the challenges anyway. An example of this is focusing on what I can do and not what I cannot do. When I get news such as having to face yet another surgery and knowing my history of how those surgeries can end up causing more damage in the long run than good, I start looking at the reason I need another throat dilation surgery done: in order for me to breathe. 

Breathing seems like a vital thing to me and even though I have a history of throat spasms during surgery I will face it anyway. I just learned to do some things ahead of time in preparation. Having an illness teaches me to prepare for all sorts of things. One preparation thing I have done is an advance directive in case I am not able to make health care choices or any type of decisions. My siblings have copies of this paperwork and that makes me feel secured. 

The weeks preceding surgery I do not read any horror books or watch horror movies so that in case I have another hallucination episode again I will not hallucinate something bad again like I did in July of 2010 when I read the Dean Koontz “Frankenstein” series before having throat surgery. I ended up having major hallucination around that book. I recommend no one reads or watches things that are scary before going under anesthesia. 

Putting my life in perspective these last three years I have been living with chronic illness, I've learned the value of acceptance: Having to accept that I am sick that I no longer can do many of the things that I use to and realizing that some of those things I used to do were not exactly healthy in the first place. 

I feel blessed that I am here, that I do now know what it is I suffer from. That there are support systems set in place from other suffers who are positive, who share what they are learning, and who are choosing to go on despite being in pain, having blisters on their bodies, brain issues, taking yucky drugs that cause lots of fall out issues more than the disease, and hearing their stories. 

The people with Vasculities are in pain and have chosen to face the challenge and not lay in bed whining about how miserable they are. These men and women are fighting to be able to function and live fulfilled lives. I may not be 100 percent at my best all the time, but I am learning to love me anyway. I am appreciating what it is I do have. I am learning how to stand up, facing the challenge and even if I have one moment where I want to crawl under the rock. I now know that feeling will only last a day and then I am up fighting again. 

I am worth fighting for and that is the biggest thing I have learned on my journey thus far.


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