It's funny how life works isn't it. My entire life I had one overwhelming fear- seizures, Epilepsy. No reason, no cause just remember seeing one on TV and having the strongest fear to it I ever had to anything. Now I am officially a diagnosed confirmed epileptic.
A week ago if you had asked, " How would you feel if the doctor says you have epilepsy". My answer would have been- ecstatic! It would prove that those other doctors were idiots, close minded and ignored the obvious. I would finally have a name for the demon and I will be truly able to fight the enemy. Yesterday as the words came out of the neurologist/epilepologist I felt the burning of tears, fear, defeat and disappointment.
After a day or so of thinking, I realized that I knew that it was epilepsy deep down all along, however, I held out hope that we were going to find something that would be fixable. A medicine I could take and they would become a distant memory. As ridiculous as that sounds especially now - that's what my heart wanted.
The last few days have included so many tears, yelling, talking; and texting. I am humbled by the reactions, love and strength from old and new friends near and far. I must say my longest friends have literally held me up with their word late into last night and today on the phone. Friendships that last 25-30 yrs are amazing. They know just the right words, how I am feeling and reacting even why better than I do. I know that life has sent them far away but the miles have been erased through this. Friendship is what keeps me standing and breathing on these days. I can never find the right words to say thank you to everyone. My kids who stopped their lives to truly check on me, understand, help during seizures. I am always shocked at their acceptance, understanding and love.
The past week has been physically and emotionally challenging. Last Monday I experienced one of the worst seizures in a year. My 15 year old son was an amazing responder. I was risking breaking my ankle and he got pillows placed. He held my arm and nails at a distance when I uncontrollably attempted to give myself a black eye the claw a hole in my face. He kept a sense of humor the entire time and didn't complain once.
Since, in a now 9 day period I have had 6 seizures. One an 18 hr Partial that was very confusing. As always my husband is my number one advocate. He has been home with me driving me to appointments and very of my conscious and logic levels - which seem pretty out there sometimes.
One major challenge I have been having is typing/spelling. If the phone didn't tell me every other word is wrong with that nice red line and suggestions- I would be none the wiser I have noticed. Even with the red lines I can tell notjjing is spelled wrong but I am not sure what neese to be fozed.
Yes those mistakes were intentional. I want to show how often in just one sentence I am re-writing constantly. When I am pre-seizure my ability to even fix it is impossible- turns into a great code between Brett and I. That all said I apologize now for any unintentional spelling and grammar issues.
As for me, I haven't been able to worm for the obvious reasons but also not so obvious like the computer screen flashes and I am out for the count. I have been trying to get more leave donated but so far been unsuccessful. The doctor thus far hasn't been convinced to let me work solely because I need income- especially after finding out my two anti-epileptic drugs AED's are $245 per month not including my other four monthly medications. So much for our amazing insurance. Apparently breakthrough seizures with generics are perfectly acceptable including the brain damage that happens every time.
My other news on Monday was that I have hat appears to be a femoral hernia caused by the violent nature of my seizures. My CT scan has been done, now waiting on the results and permission from Cedars to repair that as well as a damaged scar from early last summer that is causing some issues.
One closing remark is a little piece of me is angrier than ever at the doctors that used the diagnosis "psychosomatic" after merely speaking to me foe moments - assuming that based on my one page medical history it must be from getting married and having kids early. I understand doctors do NOT have all the answers- especially when we are talking about the brain. Learn how to swallow your pride and make a referral or admit you aren't sure what's happening.
I will try to post again soon. Please understand for now it is not easy and quite time-consuming. My brain is quite tired and sore from the effort. Hopefully this will improve over the next month and new meds.
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