Some thoughts on life

Some random thoughts on my life...type when I can keep my eyes open despite the fatigue...fight the pain with meditation until the hydrocodone can drain it from me temporarily...numb burning feet...muscles spasming in my legs, arms, back, neck...leaking bile...soaked clothing waking me in the night...waves of nausea nearly constant...try to meditate and focus away from my body...smelling a piece of bread or some fresh cooking veggies...but I can't take fighting the urge so I eat some to satisfy it...punishment with pain, nausea, vomiting...it all comes back out...tried jejunal tube feeding last night...it came out my stomach tube...my gut is working backwards...see my beautiful boy enjoying toys and bugs and clouds...wondering if I will be here to see him become a man...love of being a mother keeps me going...insurance lost so the bills pile up and I wait for more loans...medigap could have helped but the papers continue to say denied...gastroparesis...IV nutrition therapy...dystonia...fibromyalgia...written out in case I don't already remember why...working when I can...wondering if graduation could or even should become a reality...what will I do next...friends caring, sharing, giving...family loving, helping, never leaving but fearing...waiting...wondering...searching for my peace and freedom from suffering.

The photo is of my son playing in the surf on our recent summer trip to South Carolina. I loved watching him play in the waves.

Spirituality

Here is my response to a question on the new Wego dystonia bulliten board.

Question from Board:
I have wondered about the impact of Faith and Spirituality as a way to help cope with Dystonia ? What are your thoughts on this ? What do you practice ? Do you believe Faith has a role in healing ? Has it changed your outlook towards life with dystonia ? If so, How ?

My answer:
I guess I would have to say that spirituality plays a big role for me...more so than "faith" in the general sense of the word. As a Buddhist I don't focus on a "God" as is typical with Christianity, but instead I focus on striving to take my suffering as a means to become a better person and to help others. I use meditation to center my mind and body and to focus more on compassion, peace and leaving "self" behind to be centered with the universe and others. I think this is similar to how Christians feel when in prayer, I just have a different focus.

I was raised in a liberal Christian environment and spirituality has always been very important to me in dealing with chronic illness. In fact I really don't know how I would cope otherwise. I just always felt that something was missing growing up and I wanted more answers regarding what "God" is and what it means to be here and be human. I never felt that blind faith was a good answer for me. So I began reading a lot of literature on religion, philosophy and spirituality and found that Buddhism really answered a lot of these questions for me...my thoughts and ideas about myself and the world finally made sense. I have been practicing for about 5 years or so and it has really made a world of difference in my ability to cope with dystonia and more recently my chronic illnesses, gastroparesis, bowel dysmotility, pain, fibromyalgia and peripheral neuropathy.

It definitely changes the outlook regarding dystonia to have a way to cope and center my mind and body. I feel better when I do meditation and practice my beliefs and I also feel that it really impacts those around me when I maintain a positive attitude and am able to live in the moment and live beyond my suffering.

Thanks for posting this question. It is good to think about and hopefully others will appreciate having another perspective on spirituality.
Peace,
Jen

Success in the midst of chaos

I haven't written much lately as I have been writing more in my caring bridge journal at: http://www.caringbridge.org/visit/jenelle

Simply put I am surviving. A friend gave me a sticker recently that describes how I feel most days.
List of things to do today:
1. Get up
2. Survive
3. Go back to bed

My life is hard...with pain...dystonic attacks...chronic vomiting if I eat...infections...IV nutrition maintenance...feeding tube issues...fatigue...spasms and the list goes on. I survive by finding joy and happiness with my family, friends and what I do have to be thankful for.

My son is the joy of my life. He is growing up so fast. He talks all the time and loves telling me about everything. He is in awe of all that life has to offer. For example...crafts at preschool...caterpillars...rocks...spiders...dirt on the floor...the clouds...the sun...trees...cracks in the floor...friends...love...books...hugs...coffee and bagels...ice cream...snacks...rolly polly bugs...sticks...poop...flowers...bubbles...afternoon walks...playgrounds...the park...spit...toothpaste...baths...toys...stickers...grandmas and grandpas...picnics...spiderman...underpants...wagons...popsicles...and so much more.

He reminds me to focus on the small joys of life and let my struggles and disabilities exist without being the center of my life. I survive by living in the moment and being thankful for what I have. Doing this has also made me a successful Ph.D. student. I was recently recognized for my academic accomplishments.

http://bl-psy-appsrv.ads.iu.edu:8080/
If you don't see my picture click on "Dorner receives first Pari Prerana award"

The picture is with the Dean of the University Graduate School, Dean James Wimbush

For those of you living with dystonia, gastroparesis, fibromyalgia or other chronic illness. Hang in there...live in the moment...find the small joys in your life and know that you are not alone.

Identity Theft

An unfortunate late night phone call from a collections agent alerted me to the fact that I am a victim of identity theft.

While I was in the Intensive Care Unit (ICU) at University Hospital in Indianapolis someone stole my SSN, birthdate and name either from my medical records or possibly from my arm band while I was unconscious. The irony in this is that I am extremely protective of my identity. I never give my SSN if I can help it and Greg makes fun of me because I put almost everything except my toilet paper through the shredder.

While I was in the ICU, they opened a cellular phone account in my name and never paid on it. The bill was about $3,000. I have put fraud alerts with the credit reporting agencies and I will file an identity theft report soon. I worry that there are more accounts out there that I don't know about. Luckily the phone company wrote it off without too much trouble...just an afidavit for me to sign.

I usually try to find the positive or something good related to my problems or unfortunate events. With this I just can't think of anything good to come out of it except for the theif who enjoyed three months of free phone service.

Here's a good government site about how to protect yourself from identity theft.
http://www.ftc.gov/bcp/edu/microsites/idtheft/index.html

Caring Bridge

Recently, the Association of Gastrointestinal Motility Disorders teamed up with Caring Bridge to support sites for people like me who have chronic GI motility diseases. So, I started a Caring Bridge site. CaringBridge is a nonprofit web service that connects family and friends during a critical illness, treatment or recovery. I think it will be nice to have a place where I can blog about my health issues and keep everyone updated on my battle with gastroparesis and dystonia. This will allow me to focus this blog more on other aspects of my life.

The Opera

For the past few years we have enjoyed season opera tickets. Last night we attended Le Nozze di Figaro by Wolfgang Amadeus Mozart. It was a wonderful performance and I enjoyed it more than I usually enjoy going to the opera. My husband loves the opera and has been happy that he finally has me enjoying some of them too.

I found this amusing clip about opera on you tube. If you want to see what opera is all about in just ten minutes check it out.

Chest Pain

For the past couple weeks I have had mild chest pain on and off. I was worried about my heart because both domperidone and zofran (medications that I take for gastroparesis) can cause a condition called long QT sydrome which results in heart arrhythmias and can be life threatening. I called my doctor and he reassured me that the pain was probably my PICC line which rests in the superior vena cava of my heart. My EKG was normal and a chest x-ray showed that my PICC line is in the right location so my heart is fine. The PICC is probably just slightly irritating the side of the large vein of my heart. Luckily the pain is not severe especially compared to my abdominal pain and dystonia pain. The PICC line allows me to receive parenteral nutrition every night and is essential to maintaining my nutritional status right now. I can't afford to lose the PICC so I will live with the chest pain now that I know that I'm not having a heart attack or arrythmia.

The picture shows the placement of the PICC line in the heart.