Tic Toc

Welcome back!  I'm not sure if that's for me or for you.  It's been awhile since I've felt like writing.  Maybe it was the frustration.  Maybe it was the anger.  Maybe it was the denial.  It was probably alot of things.  Well you haven't missed much. 
Most importantly my precious baby boy Brayden turned 1!  I can't believe it!  He is a wild man and all boy!  So much fun but he wears us out!  Kaitlin and Connor are wonderful.  They are looking forward to summer vacation.  So are mom and dad!
As far as my health goes, I have been slowly getting worse I would say.  I had another MRI done in March.  The Neurosurgeon said there has not been any change in the tumor.  Hhmmm...ookkkkkk.  Now I have said before that I feel like I have found a good team of doctors, so I have faith that they are giving me the best medical advice.  But I am still having tons of these terrible symptoms that now my Neurosurgeon and Neurologist believe are not related to the tumor.  Well SOMETHING is terribly wrong!  I know enough about me that I know that something is just not right within me.  I keep having weird things happen to me.  They come and go and come and go.  It was just odd.  I would be here for hours if I had to list all the symptoms.  I will hit some of the ones that I think would make anyone go hhmmm.


~ stabbing chest pain (received a clean bill of health after MANY tests by my Cardiologist)
~ seizures and night tremors
~ sudden drops in my blood pressure which would result in passing out
~ memory loss
~ getting lost
~ weird whooshing feeling in my head
~ hearing odd sounds like music which no one else did - ya that could have landed me somewhere really interesting!
~ poison ivy like rashes
~ swollen eye for no apparent reason
~ low grade fevers most afternoons/evenings
~ chronic fatigue - I can sleep 16 hours a day!
~ tingling fingers and toes
~ stiff neck and back pain
~ 24/7 headache


As I said, I could go on and on with various other things.  This is a VERY short list.  I have been determined to find some answers or some medication that would help me.  I just refuse to live my life like this.  I don't want my children growing up with a sick mom.  I don't want to miss anything in their lives and I'm missing things!!!  So I have been researching. Chris has been researching.  Then one day I was cooking dinner and Dr. Phil was on.  Now when I relayed this story to my Neurologist on Friday I'm pretty sure he rolled his eyes the moment I said Dr. Phil!  Anyhow, he was doing a show on chronic illnesses.  I was only half listening.  All of a sudden I heard someone say they had this horrible stabbing chest pain that had been unexplained.  That caught my attention!  I listened as she continued to list many symptoms similar to mine.  Hhmmm...Chris and I were listening intently.  Turns out she has Lyme Disease.  I think that has to be one of the few diseases I had not been tested for.  We started researching and learning everything we could about Lyme disease.  The more we found out, the more the puzzle pieces seemed to fit.  We decided that I should be tested.  Chris called the Neurologist and asked if he would just order some Lyme testing.  Luckily he did.  Turns out the test was positive!  I think that I got bit by a tick about a year ago.  I've had it for awhile and that's why the symptoms have progressed as much as they have.  If left untreated, Lyme disease can create havoc in your body - jumping from one system to the next, including the brain.   So that's what we are dealing with now.  Lyme disease treatment is highly controversal.  Nothing is ever easy!  I will see an Infectious Disease doctor on Tuesday.  I have LOTS more to say on this subject!  Well on the subject of Lyme disease and the enormous difficulty in getting treated.  I will save that for my next entry.  In the meantime, I would encourage people to watch the documentary "Under Our Skin".  You can watch it free on hulu.com.  It will really open your eyes - not just to Lyme but to the medical crisis in our country.


Thanks for listening!