A day at the Fairhope Beach!

October 31, 2008  Thanks, to all the ones who have posted comments.  That means so very much to me and I think it means a lot to all the others who are reading this page.  I have had this disease for 3 years and this is the FIRST TIME that I have had any communication with anyone who has this disease.  Tears actually came to my eyes when I read the first comment I received.  It really helps to talk about it to another ET patient because only they could truly understand.

I had my doctor’s (Oncologist) appointment this past Tuesday and he has reduced my dosage of Hydrea to only 5 mg. daily.  I take the generic Hydroxyurea.  It is less expensive and is the same identical medicine.  I also take one low dosage aspirin daily.  I’ve been doing that from the beginning.  It works together with the Hydroxyurea.  My platelets have not gone down but are staying basically the same.  On this visit they were 570.  Two months ago they were 547 and 4 months ago they were 546.  I think the doctor considers this as staying the same.  He wants me back to have my blood drawn again in 6 weeks.  If my platelets start inching up higher he will probably up my dosage.  He reduced my medication once before when my platelets went down.  That was about a year or so ago and my platelets remained about the same for several months.  Then they slowly went creaping back up.  I felt wonderful during the time I was on the lower dosage and I am hoping I feel good this time.   Only time will tell.  In actuality, I have been feeling pretty good on the higher dosage but that’s probably because I have just become accustomed to taking it.  

I know that they are working on a cure for ET and it will probably be within the life times of most of the Et sufferers out there.  I am just hoping that it will be in my lifetime.  I’m no “spring chicken” for sure!  No one knows what causes it yet.  That would be a good start.  My uneducated theory is that stress may play a major role in this disease.  Some people can handle stress a lot better than others.  I, for one am a “worry wart”.  Always have been and still am. 

Please keep the comments coming.  Everybody who reads this page wants to know how the other ET sufferers are coping.  I want to know also.  Even though it sounds like I am not having any problems, I still have my “not so good days.”  I always get over it.  No one that I am associated with knows that I have this disease.  I don’t talk about it so much because they don’t understand.  I think it’s because it’s not that interesting to them.  I can’t blame them for that.  I probably would be the same way if I didn’t have ET.  I’m so thankful that I have my husband around for listening.  He will always stop whatever he is doing when I want to talk.  I look healthy, have energy (not as much as I used to), and laugh a lot so anybody looking and talking to me would never know that I have a very serious illness for which there is no cure.  It’s as if I have a little secret and no one knows it but me.  However, I love writing this page and communicating with all the ones who have this disease.  We need each other.  This is our way to release some of the anxiety that we are all going through everyday of our lives.  To all of you, have a blessed and healthy day and remember you are not alone.  Kanetta