Thursday, March 3, 2011

Weeks 9-12 and 13-16

As I am updating this journal..it makes me realize how great it would have been to write as it was happening.
The pharmaceutical company provided a journal, the first few weeks were so easy I abandoned the project.  What did I know...what do any of us know. As prepared and informed as I thought I was.....I had no idea what to expect. 
The month of September is a bit of a blur to me.  Work was becoming increasingly difficult.  My mind was so foggy and my memory and thought process was definitely affected. I can't remember the exact timing of all of this but the end result was I was anemic.  All of my symptoms were an affect (effect? can never remember) of my organs not receiving enough oxygen.
It took 2 weeks before I could get the necessary medication as a result of a shortage from the company and a lack of follow up from the staff at the doctors office. 
I wound up meeting my doctor at the emergency room so I could get my first dose.  As this medication is not consider an "emergency room" medication...I spent 5 hours while the hospital decided if they could give it to me.  Thank God my doctor showed up to override protocol.  Normally they will only prescribe if the hemoglobin is below 10....mine was 10.1
It's not the count that is that significant it's the percentage drop over a period of time.  Mine dropped 4 grams and qualified me for this very expensive (approximately 900/shot) treatment.  I am extremely grateful to have insurance.
I need to digress a moment.  When the ER doctor was interviewing me, one of his first questions was "How did you get Hep C"
I really wanted to ask him if it would matter how he would treat me...but I didn't which is a miracle as by now I am so irritable, depressed, exhausted and angry.
Note to doctors:  You may want to consider when and how to ask.  If it is really necessary for you to know.
 As far as I know only HIV and Hepatitis C patients are asked this question...we feel bad enough...please show some compassion.
This drug takes time to work and October 18th I had to stop working for awhile.  I spent the month of October on my couch exhausted, depressed, irritable and extremely sad.  I felt that  no one understood me.
By this time I lost 25 pounds, my hair was falling out and I developed sores in my mouth that made it very difficult to eat.  I felt very misunderstood and fairly unsupported.
Very few people understand this treatment an I get that more and more each day.  I said to a friend during this time that I wished all of my hair fell out so people could see I didn't feel well. (of course I didn't mean that)
It's just people asked so many questions and said so many things...my favorite was "Well you look good"
I felt extremely invalidated and I was getting more and more angry and depressed.
By now I read all about the ribavirun rage syndrome.  I am here to tell you it's real! When my doctor asked if I felt suicidal I replied "No, but I may be homicidal"  I laughed of course but I was agitated and quite frankly pissed off at the world.
I felt so alone.

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