Life is a Journey

I thought I had bronchitis.  Mom had just spent about 3 weeks in the hospital starting on Thanksgiving day.  I thought I was just over tired and had picked up a bug from the hospital.  After about 3 weeks I had this odd chest pain that wouldn't go away.  I had originally gone to a Doc-in-the-Box.  I thought well maybe I should see a "real" doctor.  So I found a family practice right up the street.  The doctor examined me and said well you really look fine to me.  I don't think you have bronchitis or the flu or any outward sign of infection.  The chest pain concerned her.  She sent me immediately to the cardiologist...that very afternoon for a work up.  She really wanted me to go to the ER.  But I have a husband and 3 children and well, just ewwww - who wants to go through that?  I didn't feel that sick.  I was just tired and felt feverish and had this chest pain.  So she agreed to let me off the hook as long as I went to the cardiologist and promised to go to the ER if things got worse.  I had a complete work up...lab work, EKG, Echocardiogram...all looked great!
So I went on home.  Later that night/early morning, I woke up with this horrible stabbing chest pain as if a knife was being driven into my chest.  I couldn't breathe.  Oh it was terrible.  Needless to say, after we got the kids off to school, and the baby settled in with my mom, Chris took me to the hospital.  In the ER they began to run all kinds of tests.  They concentrated on my chest pains.  They called in the Cardio group I had just seen.  They thought maybe I had a blood clot.  All lab tests for that kept coming back negative.  I had ultrasounds done of my entire body practically.  No clots found.  Everything looked normal.  The cardiologist decided to keep me overnight as they wanted to do a few more tests the next day.  I was dizzy, short of breath, my chest hurt all the way through to my back, I was weak.  The cardiologist planned on doing a stress test the next day.  Okkkkkk.  I was going to walk on a treadmill?!?! This should be interesting!  There was an order for no food or water after midnight I think it was...I might be off on the time.  Anyhow, I was taking some Ibuprofen for pain.  I am so sensitive to any pain medication - it really knocks me for a loop so I really didn't want anything stronger.  Well by the next morning I was in a lot of pain so I asked for some Ibuprofen.  The nurse said I was on NPO so I couldn't have any pills because I couldn't take them with water so my only option was to have something by IV.  She gave me something - I can't remember the name of it - but it was wicked strong.  Needless to say I couldn't even stand, let alone walk on a treadmill.  The cardiologist was not happy when he came in to see me. They ended up doing a nuclear stress test.  Again, everything was fine.  The doctor came back to my room to tell me the results.  He told me everything was fine.  He said it was all in my head... have I considered seeing a therapist.  For chest pain???  Uhhh no!  Chris asked to see an internist.  We were denied.  A heated argument ensued in which I told this "doctor" that it was not all in my head! I am as stubborn as they come - I am Irish after all!  That I was indeed sick and I would like to get well.  He did everything but laugh.  I think he smiled and rolled his eyes. So I was discharged without any answers.  Sigh.
In a previous blog I told you about my angel that I met in the cardiologist's office.  Her words were replaying over and over in my head...."Don't ever let anyone tell you it's all in your head"
I followed up with my GP.  I still had this incredible headache along with the chest pain, fatigue, and aches.  She was really surprised the hospital had not done more.  She sent me immediately for an MRI...that afternoon.  I like that she is so aggressive.  I felt like she was on my side.  She also referred me to a neurologist at the same time.  She was able to get me in the very next day.  I got the MRI done, had the CD in hand for the appointment the next day.  Chris and I decided to take a peek.  That decision changed our lives forever.  There it was.  Plain as day.  What is now referred to as Elizabeth Taylor.  A meningioma.  A non cancerous brain tumor.  Wow.  Well there you go.   Now we know what the problem is.  Now we are beyond scared.  But we have an answer.  Chris researched like crazy that night and was pretty sure it was a meningioma before we even saw the neurologist.  All I have to say is that angel was looking out for us when we were able to get in so quickly.  I'm not sure we could have handled days of waiting.  But I do remember calling mommy about 3am telling her I didn't think I could possibly make it until 10am.  She talked me down from my ledge thankfully! 
The next day the neurologist confirmed that the mass we saw on the MRI was indeed a Meningioma.  I'll fast forward here as I think I covered alot of this in other entries.  After we saw this doctor and a Neurosurgeon my symptoms continued and worsened.  I started having seizures, fainting, headaches 24/7, fatigue - I could sleep 16 hours a day, dizziness, memory loss, hallucinations, I would wander off, I couldn't drive anymore for fear I would have a seizure or get lost - I was a complete mess! 
The day after Christmas, Chris took me to yet another hospital ER.  He said these people are THE BEST when it comes to brain tumors. People come from around the country to be seen by them.  He thought the quickest way to them was through the ER.  He was right of course.  After explaining my symptoms to many doctors, they finally admitted me to the Neuro department.  Alas, something will be done!  Geeeeez!  I have a tumor!  Someone please take it out and make all this insanity stop!  It seems soooo simple!!!!  So I am moved upstairs.  In the morning, as the occupational therapist comes in I have a seizure.  Not far behind her a team of neurologists comes in to see me.  Now they haven't done any testing yet...no MRIs, no Cts...just listened to me and Chris to talk basically and looked at my previous MRI.  One of the neurologists sits down and says this to me...among other things...but this was the best and the only thing worth repeating..."Mrs. Simmons, are you depressed?"  I answer, "NO."  He says, "Well, you should be.  Here's a prescription for an anti depressant.  You see, we think this is all in your head.  Go see a therapist.  Sometimes depression manifests itself as seizures."
I seeeeeeeeeee.  Now tell me, you all are smart people....who do you think is the crazy one?!?!?!  Well I got the anti depressant filled just so I could prove to those crazy doctors that their magic pill wouldn't make all this go away.  And what do you know....I was right!
So after that fiasco, I just went home and suffered awhile more with all these crazy symptoms that I was sure was caused by this tumor despite what all the doctors said.  I took the darn pills.  Nothing bothered me.  :)  Again, my wonderful hubby found a great Neurosurgeon at Northside and he IS wonderful!  I went to see him and begged him to remove ET (Elizabeth Taylor).  He said no way...she doesn't need to come out.  Hhmmm...really...are you sure???  He said well I'm pretty sure!  But I do believe you are having some kind of neurological issues.  They just aren't related to the tumor.  Wait...did he just say he believed me????  OK...I'll stick with this guy!  He referred me to a new neurologist who I love!  He also took one look at me, listened to me and N-E-V-E-R once said it was all in my head OR suggested I go see a therapist.  THANK YOU GOD!  Now I have a great team!  Now just to figure out what the heck what is wrong with me.  After a couple of visits, I had the neurologist stumped.  He put me on Topomax for headaches and gradually increased the dose until it controlled my seizures.  All the while I was still having odd symptoms that would pop up, go away, and a new one would take its place.  We never knew from one day to the next how I would feel.  It was so frustrating for our entire family.  I would go a few weeks and feel alright.  And then all of a sudden I would feel like I was hit by a truck and I would sleep all day long.  I would ache from head to toe like I had the flu but without any other flu symptoms.  I would have a fever every evening for no reason.  I had a terribly stiff neck that would not go away.  My eye would all of a sudden swell up.  As I lay in bed at night I would hear music playing but only I would hear it.  My ears would ring.  My muscles would twitch.  I would smell strange scents that weren't really there - like things burning.  Just weird things that didn't seem to make sense.
One day as I was cooking dinner I had Dr. Phil on and I was half listening.  All of a sudden I heard a lady say she had this stabbing chest pain that her doctor couldn't exlain.  I stopped to listen.  Turns out she had Lyme disease.  She also had some of the same symptoms I had.  Dizzy spells, headaches, aches and pains.  I told Chris about it.  He listened.  We researched it.  A few weeks later we called my neurologist and asked him if he would order a Lyme test.  He didn't ask why...he just ordered it.  Yea!  I went to the lab.  After 2 days the results came back!  Drum roll please......yep you guessed it...negative.  Hhmmmm....well we could have sworn we were right!  So we went back to the drawing board.  After more research we determined that based on my symptoms I was probably infected about a year ago.  The longer you are infected, the more it affects your body systems.  When a doctor tests you for Lyme disease, they start with a very basic test called the ELISA test.  If this test is negative, the testing stops there.  But this test is not very sensitive. In fact it's wrong alot of the time (I won't get into all the statistics here)...especially if it's not a recent bite.  If your test is positive, then they do another test automatically - the Western Blot which tells you specifically what bacteria you're infected with.  Well after learning this we again asked the neurologist if he would order the Western Blot test and a couple other tests.  He again agreed.  After a looonnggg wait...over the weekend we finally got the results.  Funny thing, the neurologist said he couldn't read the results since he was not familiar with Lyme testing.  I said fax them to me!  I can do it!!!!!  So he did!  As soon as I saw the results I cried!  It was positive!  I had Lyme Disease!  We had finally found the answer!  Chris and I did it!  IT WAS NOT ALL IN MY HEAD!  I DON'T NEED A THERAPIST! (well maybe sometimes - her name is mommy)
Then reality sunk in.  Wow...Lyme Disease!  This is gonna be tough!  But at least we know!  But if we had just known 6 months ago!  Oh how much easier this road would have been!  At that moment so many emotions ran through me.  I wanted to see each one of those doctors and slap them!  I wanted to tell their mother's on them!  What could have been cured with 2 weeks of antibiotics will know take months...possibly years to cure.  Some of my neurological symptoms may be irreversible.  But at least we have an answer. 
And now here we are.  At the beginning of yet another journey.  Not knowing what this one holds.  But I have faith that everything will be alright.  I still have that angel sitting with me.  I feel like I have come full circle with her.  I had faith.  I listened.  Everytime I wanted to give up, give in.  I listened.  She was right.  Don't EVER let anyone tell you it's all in your head.  I knew something was wrong and no doctor - no matter how good - could tell me otherwise.  Faith is a wonderful thing!