First and foremost before I write anything else- I have to say thank you to Mia, Nichole, Pastor Tara, and both my journey family and Exit 187 family. I'm so blessed and honored to have such incredible people in my life. I don't know how I'll ever be able to give back the way you all have given to me. Either through listening, encouraging me, helping me with something and just praying. I only pray everyday that I am able to give back to even just one person the way all of you have helped me. Seriously I don't have the words to express how thankful I am.
I've tried writing this like three times before and couldn't. Now-- I am. As many of you know-- I've gone through some test this week and some Dr. Appts. It's been-- a journey. A rough one. But I'm alive. God is good and I'm well, I'm alive. Some of you also know I'm a candidate for surgery- to have the part of my brain causing the seizures removed. Well- they don't want to do that right now re: the Cleveland Clinic, because its dangerous. We're exhausting all drugs. The type of epilepsy I have though that causes problems. I have Focal Epilepsy with potential of it being deep in my temporal Lobe. The issue is my seizures- they are what's known as intractable complex partial seizures with secondary generalized seizures. To sum it up in English- I'm having two types of seizures (maybe more) medications are only controlling the seizures for so long, then they stop and I have even worse seizures and worse side effects from the meds. The seizures are scary. I stop breathing I'm out anywhere between 1 minute to 10 minutes. The next seizure I have and people are with me and catch me- I'm in trouble- I get hospitalized and thrown in the monitoring unit at the Epilepsy center at the Cleveland Clinic. I say that as a bad thing I know it's not-- I'm just scared.im at risk for brain damage, mental retardation... Death. With the type of seizures I've been having. The side effects from them alone take me out for weeks. I have to record EVERYTHING i do. I have to find people I trust that I'm with to tell them what to do in case of a bad seizure, minor ones ill disappear and come back and just be tired and have a headache. But the severe ones-- I have to get to a hospital and inform people on what to do and it's scary. Because If they don't know what to do, it's life or death.
I'm at a point now where I might have to quit going to church or sit outside church or something. I'm 21 years old and don't want I be babysat. I want my independence back yet-- I'm losing every once of it almost till I can figure out how to control these and get "better". I'm tired of medication. I'm tired of depending on people. I feel like I'm nothing but a burden most of the time now. So it's been really hard. But that's the update. That's the best I can do right now. I'm thankful for my friends. My church. They have been so supportive. I've cried so much to them. Heck I don't even know where I'm gonna live and or how I'm gonna get to and from work now and they still are like tab-- your gonna make it. Always helping me have an optimistic attitude. I'm blessed still. God had been so Good to me. Has my situation different? No- absolutely no. But in know I never walk alone. Even when my friends aren't there and I've just woken up with a fever after a seizure at 3 am.. God is still Good and still has a plan. He is either gonna heal me or gonna walk with-- no carry me- through every step of this healing process. Cause I can't do this by myself. A verse I've been holding onto is ..Even to your old age and gray hairs
I am he, I am he who will sustain you.
I have made you and I will carry you;
I will sustain you and I will rescue you. (Isaiah 46:4 NIV)
