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Wednesday, July 27, 2011

More info about the beginning

As far as my comment goes about getting to that later in my first post regarding not being able to eat healthy - My eating habits are drastically changed since February 2010.  I had been taking indomethacin since the end of November 2009.  This medication was the only thing that gave me days at a time of being pain free.  Unfortunately it wreaked havoc in my GI system.  It caused ulcerations throughout the GI tract so bad initially I was diagnosed as having Crohn's disease triggered by the indomethacin, then eventually it was decided the medication itself was what caused all of the ulcerations.  I could not eat without agony.  I spent a couple months basically living off soup or baby food.  I was hospitalized twice and almost had a hemicolectomy.  Boy am I glad I avoided that!  Also added to the first hospitalization my mother was on her way to pick up my oldest daughter and they were coming to visit me in the hospital when she was hit by a drunk/high driver and killed instantly.  He still has not gone to trial by the way.  Medically and mentally I am not the same.  I can never take any type of anti-inflammatory medication again or aspirin.  I love to eat lots of vegetables but unfortunately that causes me problems now ever since the damage caused by indomethacin. That is why I am tired of medications and want to go ahead with the stimulator.  I am hoping to get off medications.  Aside from the head pain I have always been essentially healthy.  I have had migraines since age 12 but they would only last a day and I had one maybe once or twice a month until I woke up one day with a headache that would not go away no matter what I did.  I don't want medications to mess me up anymore.  I cannot live without pain medication at this time, however.  If I did not take medications I would be completely nonfunctional.  The medications dull the pain enough so that I can still do some of what I need or want to do, but sadly not anywhere near what I want to be doing.   I have to limit any time going out into public, driving, being in noisy environment (as much as possible having kids at home!), etc. because afterwards I eventually end up lying on the couch with my ice pack and crying until I go to sleep.   This includes birthday parties, holidays, etc.  I really would like to get back to a normal life.  Hopefully I will not have to fight too hard with the insurance company to get the trial stimulator.

Tuesday, July 26, 2011

What the...

Ok, so now something totally different is happening.  Now the right side of my head has been hurting this afternoon.  Strangely enough the right side of my head hurt and my left cheek was red and hot.  What is going on with my crazy body??  Tonight however I am back to the same ol' headache on the left and red hot cheek.  I wonder if I need to ask to have leads placed on both sides if I actually get to have the stimulator placed?  Now I am wondering a little bit about my diagnosis.  I have read a couple of articles about a person having hemicrania continua with side shift, but it seems to be very rare.  Up until now I have never had a doubt.  All the symptoms matched.  Who knows?

Friday, July 22, 2011

New Doctor

Well I got to meet the doctor in NC.  He is awesome!  He even talked about how there is about a 100% chance of needing revision because of lead migration and he tries to secure the leads very, very well.  He is really nice and wants to do the surgery but says my biggest problem will be getting the insurance company to pay.  He is submitting for preauthorization for a trial implant so we are going from there.  I am pretty sure I will have to appeal.  I am trying to stay hopeful though!  Everyone there was very friendly and nice.  I really like the doctor and staff.  I actually talked to a fellow there and she answered questions I thought about after the doctor had left the room.  She was very helpful and knowledgeable also.  I will have to have some hair shaved off but I don't really care.  Heck I would shave my whole head if it meant relief from this pain!