Those of us living with TN live, suffer and Those of us living with TN live, suffer and have to deal with horrendous PAIN. have to deal with horrendous PAIN. We miss days, weeks, months of work, We miss days, weeks, months of work, sometimes having to lose the ability to sometimes having to lose the ability to commit to work altogether. commit to work altogether. We miss the ability to do and be all that we We miss the ability to do and be all that we were before TN entered our lives. were before TN entered our lives. We initially make plans as always, volunteer We initially make plans as always, volunteer work, activities with our kids, families, dates work, activities with our kids, families, dates with our friends, only to soon realize we with our friends, only to soon realize we cant make plans at all as the fear or pain of cant make plans at all as the fear or pain of TN can rear its ugly head at any time. TN can rear its ugly head at any time. We let people down. ( at least thats how it We let people down. ( at least thats how it feels) feels) We Are overwhelmed by the pain. We Are overwhelmed by the pain. We are frustrated with our care by doctors, We are frustrated with our care by doctors, specialists. specialists. We take heavy duty meds that take time to We take heavy duty meds that take time to work, during which were drowsy, grumpy, work, during which were drowsy, grumpy, not feeling ourselves. not feeling ourselves. Each relapse of pain has us going through Each relapse of pain has us going through this several times until pain control is this several times until pain control is reached. ( or not ) reached. ( or not ) These meds cause all sorts of side effects, These meds cause all sorts of side effects, make us loopy, forgetful, unable to make us loopy, forgetful, unable to remember normal words during a remember normal words during a conversation, we feel stupid, embarrassed. conversation, we feel stupid, embarrassed. Then we feel guilt for having to rely on Then we feel guilt for having to rely on others, spouse, parent, child, friend, family to others, spouse, parent, child, friend, family to do what we can no longer do for ourselves. do what we can no longer do for ourselves. EVERYTHING changes.... EVERYTHING changes.... Sometimes we lose our sense of who we are Sometimes we lose our sense of who we are other than TN sufferer.... other than TN sufferer.... Our close family & friends feel helpless and Our close family & friends feel helpless and wish they could do more.... wish they could do more.... Ours for the most part is an invisible Ours for the most part is an invisible disease, and not well known. Sometimes we disease, and not well known. Sometimes we can feel like we are constantly explaining to can feel like we are constantly explaining to others, we dont look sick, so we feel like others, we dont look sick, so we feel like people around us think were making it up. people around us think were making it up. We feel lonely, isolated. We feel lonely, isolated. We try our best. We try our best. We research, join support groups, journal, We research, join support groups, journal, Pray, meditate, seek alternative therapies Pray, meditate, seek alternative therapies and we hope....we lose hope, and we hope. and we hope....we lose hope, and we hope. We hurt, our face hurts and our hearts hurt. We hurt, our face hurts and our hearts hurt. Those of us lucky enough to have Those of us lucky enough to have successful procedures OR long term successful procedures OR long term remissions KNOW what its like to live again, remissions KNOW what its like to live again, we are appreciative of the days that allow us we are appreciative of the days that allow us to function once again! to function once again! Always though, there is that fear that it will Always though, there is that fear that it will come back........ come back........ TN hurts beyond our imaginations TN hurts beyond our imaginations capabilities to accurately describe it. capabilities to accurately describe it. Emotionally the side effects are many. I thought having major brain surgery would fix things but, it just hasnt. Gamma knife surgery has done nothing yet either... I feel defeated and as if I am being punished for something. I feel like I dont deserve such a smart wonderful little boy I cant be the kind of mom he deserves right now.. Im sorry.. its been a HARD few days.. Im in constant pain and just need to vent!
Posted on: Sun, 20 Oct 2013 05:26:52 +0000