Posted by Jackie M. on March 11, 1999 at 15:43:57:
In Reply to: need help from others who have held on to their life posted by tami on March 11, 1999 at 01:33:29:
Dear Tami,
Being a woman, wife and mother who's suffered from cluster h/a's for 25 years, I can relate to the special problems that arise with clusters. I can also understand your feelings of wanting to end it all; but on those precious pain free days you realize that it's the pain and everything/one it affects that you want to end...not your life. Please know Tami, that while female cluster h/a sufferers may be in the minority, we do exist and are only too willing to help others in their time of need.
I have found a few obstacles indigenous to women who suffer from cluster h/a's. The first I discovered many years ago, when the neurologists and clinics had a hard time labeling my headaches as clusters simply because I was a woman. That misconception among the medical community has subsided, though it still does exist. The second I discovered when I became a mother. Mothers don't get sick. I recall many countless nights when I would bend over the crib of my fretful babies, with pain piercing through a tearing eye while I tried to use my Lamaze breathing to bare the pain of another cluster attack. Many school plays and den meetings I would attend physcially, while my mind was swimming in pain & pain narcotics. (I feared the children would only remember that I missed their big moment on stage and forget the reason why.) The third is born from another unfounded doctrine within the medical community; that when woman complain of illness and/or pain, it is often due to some sort of prementral, hormonal, psychological problem. (A woman complaining of chest pains is going through some mid-life, perimenopausal crisis, while the man is rushed to the nearest ER.) One of my doctors wanted to put me on Prozac. I wonder if he'd suggested the same to my male counterpart? Sure I'm depressed Doc! I'm depressed because of the *pain* and how it has persistantly robbed me of life, respect and dignity. I also happen to believe that women are easy prey to the guilt monster. If the kids got too many fast food nights, I felt guilty. If the housework fell too far behind, I felt guilty. And even though you know in your heart that this torture is not your fault and you are doing your best through it, you can't help but feel guilty for not being the wife, mom and woman you'd like to be for your family. All this coupled with very nature of clusters, the lack of understanding about them, and the absense of a cure, makes them one hell of a monster to have to battle. It helps to know that you are not alone. There are other women who really do understand what you are going through. Please feel free to email me anytime.
Wishing you painfree days and nights,
Jackie M.