My journey begins August 1989 at the age of 33. I was married with two preteen boys and working my way toward being a nurse and only sick with normal things, on and off, never once thinking my life would change, and my dreams would have to change. I was having migraines after the birth of my last child and found that doctors treated women no different than they treat us today. It's all in our head. It was a Wednesday night, and I walked to church with my boys, as my husband was a truck driver, with a start of a headache so took my aspirin. I wasn’t feeling very good by the end of the night and my sleep wasn’t good so I chalked it up to a migraine. It was very hot that summer, and it didn’t help. I knew I had a check up Friday for something unrelated, and I would ask about it. On this 103 degree summer day, I walked several blocks with my boys to my appointment and talked to my doctor. He said he was very concerned about my blood pressure and head pain, and he wanted me to go to hospital. I said that I have the kids, and my husband wasn’t due in until later that night. I would go home and rest and take the meds he gave me to help the pain. I barely made it home, passed out in bed, have no clue what the boys were up to that afternoon, but when I woke up I was worse. It was dinnertime and knew I had to feed the kids, and the phone rang; it was my doctor asking how I was. I told him, and then I was asked, "Why are you slurring?" I said that I wasn’t aware of that, but I also felt weakness on my left side. In a very firm voice he said, "I don’t care who you get to take care of the kids. Get your self to the hospital NOW!" He told me which one to go to. It wasn’t close by any means.
I called my friend and told her my problem. She came and took me to hospital. By now, I am out of it, not talking well and dragging my left side. She took me to the wrong hospital, and when she figured it out, I arrived at the right place. All of a sudden, it was like no time to think, no time to wonder. All I kept saying was, "Let me go home. I have to feed my kids their dinner, do the dishes, shave my legs and then I will come back." They kept asking me why that was so important, but at the time, it was to me. They found a huge clot in my right frontal lobe in a vein that should not have one. It was pumping blood down, not up. I was admitted and prepped, and about that time, my husband came in all confused, perplexed with no clue what was going on. All they said to us was, "Tell each other you love them. We have to go to surgery now."
After I woke up, my husband was clearly upset. He told me how he paced for five hours, went outside to scream and punch the wall, how he didn’t know what to say or do, no one could comfort him and that I was told to get my affairs in order. I just lay there not sure what the heck I had just been through. He said my surgeon came out and told him I almost died on the table, and that my brain was a mess. He cleaned up the best he could, took the clot out and said he has no clue why this happened to me. It wasn’t a normal situation by any means and that I may not make it through the next 24 hours, and if I do, I had less than three months to live.
The shock is all I recall the week in the hospital with all the care I got and family and friends hovering over me, when all I wanted was to be left alone. I wasn’t talking yet, and I still had left side deficit and a lot of pain. My husband was in shock and the unknown, the family not knowing what to say to me. By now, my mom had arrived from out of town to care for the kids so he could come and go. My dad was driving up and would arrive later in the next week.
My doctor was a nice man and the best in his field. He said what I had was rare and at my age also; they were researching everything. I guess they ended up finding a journal somewhere in Japanese and had to go to the university for translation. Only one other person had what I did. He told me he was careful not to shave off too much hair as he was balding himself and knew how it felt. That made me smile. They had to open a window on the right side of my head to do the surgery.
I went home after about a week, the house all full of people welcoming me home. I wanted a shower and my own bed by now, and my mom said, "A little rouge and lip stick will make you feel better." To this day, that’s her answer to everything (got to love our moms). My dad arrived the same day I got home, and he said, "You're supposed to be dead. I even brought my suit for your funeral." I stood there like, "Hi Dad. I love you too." My dad had a way about him, but being on the road, he had no way of knowing. So the first year, all I knew was I could die, I needed to make amends to people I had problems with, renew friendships and think of what I needed to get done, not knowing if I was going wake up.
My husband had to work, so he drove in town instead of on the road. With every pain, I freaked. Every night, I counted what I had, and every morning, I did a body check to see if anything had changed. I got the stitches out and started having seizures, always at the doctor's trying med after med, test after test. Worry and fear over took me and my husband. He came home one night to find ER personnel by our home. It was for next door. He said that all he could do was say, "Oh my God, not again!" But the closer he got to the house, he knew it wasn’t me. He told me that the fear in him that he would see this one day came true, but he was happy it wasn’t me.
We had a rough year, and with therapy, I got it all back except for slight weakness and seizures. My words got turned around, and I always got bad pains in my head. Life was not the same anymore; my kids changed. One got more rebellious; the other got watchful of his mommy. A few years had passed, and my youngest son had some problems and had a head MRI. We ended up seeing my surgeon; he looked at me and said, "You're supposed to be dead." I laughed and said, "Guess I proved you wrong, and I believe God performed a miracle with me." He also said he used me as a teaching tool in a class because my clot was rare, and he thought I was dead. So I had my 15 minutes of fame, I guess.
Over the many years since, I had lots of trials to get through physically and mentally. I had other conditions to treat, meds always interacting and always had head pain. I was limited because I tired easily and found out what I could and could not do because of seizure triggers. My family was always calling an ambulance or taking me to the ER for something. After awhile, we all got frustrated. Half the time, doctors were at a loss on how to treat me and figured I was mentally unstable and nothing was wrong with me. It got to where my husband threw his arms up in the air.
One of his outlets was poems, and he wrote one regarding that day the doctor said, "Probably just a migraine, not to worry." It ended up being a TIA. I had to be my own advocate by 10 years into this. I knew my body. I knew my triggers, and I knew the difference between TIA and migraines. I stopped going to the ER, and I told my family, "If you find me on the floor, make sure I am comfortable and let me be as long as I am breathing." I figured if the doctors were not going to care, I would do it my way. So I made new dreams, lived one day at a time and depended on my faith, friends and family. I did what I could to enjoy life and learn new habits and crafts. I was unable to work ever again, so it was up to me. Our lives were not without struggle. Our marriage suffered sometimes. Men think that if you’re walking and talking, you're fine. Our kids were growing up, and we had troubles with them, but all in all, considering I was supposed to be dead, and two other times, I almost died again, one with a seizure and one with medication, I figured God wasn’t done with me yet. So I lived with daily blackouts, seizures and whatever illness came my way, sometimes alone, sometimes with support. The less the docs knew, I was better off. Looking back now, they really didn’t know like they know now, and I was so in debt, medically had to draw the line and use common sense. I just lived life and figured when my day comes, then that’s meant to be.
We moved to another state after the kids left home, and the neuro I found was very nice and wanted to try newer meds to control my seizures. Then the Vagus Nerve Stimulator came out, and I was one of the first 18 patients in Illinois to get that put into me. With that and meds, I finally became more stable with yearly check ups. I was still going through TIAs and stuff but knew that unless I was in trouble, I could deal with it. I found new friends and did new things within my limits as I had blocks of memory loss and also balance issues. It was hard to read and write and then not have recall. But each time something changed, the older I got or get, I just reevaluate things and find other ways.
I have been through some life changing events the last three years, but have gotten through them. I had a mini stroke, no clot, in November 2011. That sent me to rehab to gain my speech back and strengthen my left side. Thankfully, that is all getting back to normal. I still need help with a few things, but my life is made up of ongoing exercises, not giving up and also finding out that if a doctor can’t see something on a test, he assumes you're mental and doesn’t care. Also, I found out when your doctor does not care anymore, and evidence says, "Look, she does have deficits even though the scan said nothing." I can’t have an MRI with this stimulator in me, so unless I have a bleed, there isn’t proof. I got very frustrated this last time as did my family. I am thankful for the rehab as they got me back on track, and I am thankful to my God because I believe that faith can move mountains.
I am going to meet my new doctor this weekend. I don’t have insurance so was lucky he came along. I think new ideas, new opinions and a total check up which I haven’t had in several years is in order for my next journey in life. I will always have physical problems, but I don’t have to let them dictate my life, and I don’t have to stay with a doctor that thinks everything is "mental woman." I hope one day I will be able to walk into a doctor and know I matter. Maybe, I could have had this not happen long ago if someone took me seriously. Who knows?
It’s almost spring, and I have walking dates with my son in the park planned and a trip to visit my mom and sister in Kansas, so I have reason to keep going everyday. Therapy does not end in rehab. Thanks, and I hope this brings someone some inspiration that life can go on, and you can learn to live with what ever happens as long as you stay strong and fight.