Overcoming The Unknown Part 1

Living with Spina Bifida has been a blessing and well....not.  It's a blessing because I've had many opportunities to demonstrate for others what Is possible in spite of limitations with God as my strength and help. 

It's not been such a blessing when many operations are needed or the hospitalizations that follow.  Most of the time when a surgery was needed, both the Dr. and I knew what the problem was and what needed to happen to fix it.  This put me at ease, so I just wanted to get things over and done with so I could get back to normal. Most times, the only part that scared or bothered me was the pain of having the IV started.

The last few months of this year have been painful (physically and otherwise), scary, confusing and a real challenge of faith for me.  In August, I began having more issues than normal with my stomach(because of SB, I'm bowel and bladder incontenent along with other internal complications).  Many times, after I knew I didn't need to use the bathroom, I still felt full, bloated and my stomach was distended out so far I looked to be 6-9 months pregnant. I'm an eater, but I knew that I couldn't have been eating That much too make this happen.  Movement, especially transfereing, was difficult since my stomach was getting in my way.  I often felt sluggish and had to push myself to feel like doing much of anything.  I couldn't understand it because at every Dr. visit I was given a clean bill of health.  To the naked eye, I didn't have the physical appearence of being sick...probably just fat.

 I decided to go to my Gastrointerologist to discuss my issues with him and see if he could suggest a different bowel regimen and see if there may be issues that I wasn't aware of.  He ordered a CT scan of my, colon, intestines, gall bladder and kidneys.  I waited to hear results.  When I had waited what I thought was a reasonable time, I called about the results.  The nurse said everything came back fine.  I said, "I can't dispute that, but why do I feel this pain and where's it coming from?"  She said she'd have the Dr. call me soon.  The next morning, he called and confirmed the findings.  HOWEVER(emphasis), he said the only other thing he saw was that I had an enlarged left kidney and a sack of fluid on my abdomen that had actually shown up on a CT scan from June '10 after I was in an accident.  I never heard about this finding, so this was a surprise to me.  He said he'd done all he could for me at this time and would recommend meeting with my Urologist for my bladder and my Neurologist for my shunt.  He also said if those appointments went well, come back and we'd talk some more.

Gonna give this a shot...Part 2

Where was I....OH Yeah!  I got adopted by one of the nurses.  In order for me to have most of the abilities I do, I've had many operations(about 22 total), to correct various problems caused by the Spina Bifida. Needless to say, I was hospitalized alot, I think once I was in for almost a year.  Once, I was in for Christmas.  At that time, I liked to call the North Poll to call Santa. I remember wanting to do this, and wondering where my dad went.  Later, I learned when I wanted to make the call he hid behind the nurses station so I wouldn't see and he pretended to be Santa.  I'm so thankful for fun, fanciful stuff like that 'cause it's what brought a little joy to me when I couldn't be out with others.

 Growing up I was encouraged that I could do anything despite my disability....although as I got older I learned it was very hard for my parents(especially mom) to let me do things that They didn't think was safe(but this's a topic for another post).  Anyway, I've always said I do anything anyone else does, just differently.  Junior high and High School were full of friends, fun and lots of activities.  I was part of student council, French Club(somehow I managed to speak French with a Spanish accent, now I probably speak Spanish with a French accent...kidding) and Marching Band.  Yes, I said Marching Band.  I had an attendent who wheeled me out onto the field while I played my trumpet.  Our band director would coordinate some of the routines so I could be in them.  When I wasn't in a rountine, I was on the sidelines continuing to play.  My attendant and I would travel with the band to games, band camps and competitions.  Once we went to VA(I think).  Since I wasn't able to get on the bus the others were traveling in, my mom drove me, my attendant and one friend in our van.  All the way down, we laughed, joked and sang Disney songs at the top of our lungs. It was the best time. 

Even though I could be a part of things, sometime I still struggled with feeling seperated since I couldn't do a lot of things exactly as others did.  Most of this was because of lack of accessibility for persons with disabilities. 

 All in all I'm pretty much a like anyone else.  I have ups, downs, doubts and fears, hopes and dreams.  I hope this blog will be an encouragement for all who read it.

Gonna give this a shot Part 1

Hi!  My name's Kara.  I've heard of blogging and read a few even but felt like nothing in my life would be interesting enough.  However, the more I think about it, sometimes even the small things are interesting and can be of help and encouragement to others, which is part of the purpose I started this.  So...with that said here's a little about me.

I'm a thirty-something young women who's seen, done and experienced a lot.  I live with a birth defect called Spina Bifida that occurs 15 days after conception in which the spine doesn't close properly.  With it come many internal complications, and paralysis.  At birth, my family wasn't given much hope for my life.  I would either die within a few days/weeks, or if I did live, I would be a lifeless vegetable(I haven't met anyone who fits that description).  The advice they were given was to institutionalize me and let me die peacefully.   They found a place which was more home-like.  The staff could see that I was diagnosed incorrectly.  They would play with me, talk to me and encourage me to grow as any child would.  One nurse in particular paid special attention to me.  She would visit me on breaks.  Eventually, after some time of visiting her family, they adopted me.