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Faces of Pain - Lissa's Story

LissaI guess it's past time for me to write my story.  My name is Melissa, but close family and friends often call me Lissa.  I hope everyone doesn't mind, but I'm going to go back a bit before my chronic pain, to explain some of my other illnesses.

I always remember suffering from depression and anxiety, from a very early age.  It came out in various ways, but did not get to the point where it disrupted my life until I was in University.  That was the first time I was treated for depression and anxiety with therapy and medication.
Well, that situation only got worse as time went on.  As a young, single working teacher, I had my first migraine.  I thought I was going to die from the intense pain and vomiting.  My mom suffered with migraines, so I called her and she told me to go to the ER immediately (my roommate drove me, luckily).  So from then on I suffered with occasional migraines, depression, and anxiety.
At the age of 27, in the fall of 1996, I moved back to the same area as my parents.  Within a year, they had to put me in a psychiatric hospital.  There, I was finally diagnosed with obsessive-compulsive disorder, which causes clinical depression but is actually an anxiety disorder.  Medication and therapy made a huge difference in my life, and I felt normal for once in my lifetime.
Lissa's FamilySoon thereafter I met McKay, and within a few months we were married.  It's been a wonderful 13 1/2 years, but we've had some tough times.  Our second year of marriage, we had twins, Caleb and Madeleine, and our daughter was born with a heart defect.  She had many heart procedures, including two open-heart surgeries, before she died at home at the age of 11 months.  The day of her death is too difficult to describe, but suffice it to say that I was eventually diagnosed with post-traumatic stress disorder because of what we went through before the paramedics came.  I also suffer from panic attacks because of the anxiety disorder and PTSD.
During the time of Madeleine's illness and subsequent death, my migraines became more and more frequent.  But at the time, that seemed only natural because of the circumstances.  It finally reached the point in June 2001 that the migraine never stopped. And I do mean never.  I saw my neurologist, and he eventually sent me to a specialist at the University of South Alabama who is supposedly one of the top headache specialists in the country.  He told me that after a certain amount of time (which I was way past), the brain rewires itself to think that pain is "normal".  He tried me on all kinds of medicine, from methadone to oxycontin, but none really worked well enough for me to be able to stand the side effects.  He finally called me at home one day and told me that he could do nothing else for me.  And that was it.  For him, at least.
My neurologist at home has never stopped trying to find things to help me. I've tried every preventative, every pain pill/patch; you name it, I'm pretty sure I've tried it!  I had a lumbar puncture, which showed that the pressure in my cerebro-spinal fluid is too high, causing fluid to press on the brain.  This is called pseudotumor cerebri.  For this problem, I have to take fluid pills twice a day, every day to try to keep the fluid, and thus the pressure on my brain, down.  
My neurologist started me on botox injections this year, and I am having wonderful results.  The pain never goes away, but it has been less overall (lower on the pain scale of 1 - 10).   A normal pain day for me now means a 
4-6 on the pain scale.  Of course, some days are much worse, and he has three different kinds of pain treatments that we rotate according to how bad the pain is.  But for 10 years (as of this month, June 2011), it has never been below a 4.  And a 4 is actually pretty rare, to be honest.
So now I have at least four kinds of headaches:  chronic daily migraines that pound on the sides of my head, pressure on the back and top of my head from the pseudotumor cerebri, and at times a sinus headache (at the usual places) and of course the fun tension headaches that come with life, especially life with an anxiety disorder!  

I will never stop looking and praying for a way out of this constant pain.  Often there is little I can do except hurt, vomit, and cry, but I always try to keep in the back of my mind that it is going to end, and with God's help, end permanently.

Hugs,
Lissa