My Brain Stem Stroke

My true story

On January 23 2014, my life was changed forever. I had been feeling ill that week at work, I was having dizzy spells in the a.m. only, then it was a.m dizzy spells with vomiting. I finally made a family Dr appointment. To be quite frank, I though my husband and I were going to find out we were having our second child. My Dr instead was worried about a severe infection and mentioned I looked like a humpback. He scheduled for the next day for me to have a knock and head MRI and before leaving did blood work. I went the next day for the MRI, and began with a headache. Now the thought was sinus pressure, flu, cold. Dr called me in sumatriptan and advised me my blood work was coming back off the charts. Something was going on, but he wanted to wait for MRI results. We ate dinner and I went to do dishes, when I had the dizzy feeling a lot more intense then before. I knew at this moment something was wrong and very bad. I yelled for my husband. I don't recall him getting to me or getting me to living room. I was in and out of a painful sleepy type State. My words mumbled and I was not coherent. My brain I could feel was turning into soup, and I can't express the feeling of your brain scrambling and being helpless. My husband kept asking if he should call 911, and somehow I conveyed yes. I'd be in and out, pain, explosion in head, lights like fire to eyes, I'd shut eyes and open them(when did my parents arrive, everyone looks scared), met arrived, lifted arm and it fell hard in my face( angered me I punched myself), asked me to stand for gurney(I'm laughing inside saying yeah ok), my body crumbles. I remember the cold air, my little girls fear in her eyes telling me I was going to be alright, my parents telling me they loved me and would care for my daughter, my husband getting in truck to follow ambulance. I don't recall much of the ambulance except one volunteer eating above me and the nausea from smelling the sandwich and the blood boiling cause she was dropping crumbs on me. Once I entered hospital I left out a horrible scream. The lights were so intense for my eyes, luckily they noticed and covered them. In and out again, eyes open, mother n law is now here and looks scared. Dr says he wants to do a spinal tap. The fear came over me. I had one as a child and the pain was crazy. I get in position, hug my knees....waiting, nothing. He says he is done( but I never felt anything). Blood work, test after test performed. Wake up in a room, sister m law and niece and her friend now with me. The next day, I am awakes by a Dr saying Mrs Jones. Family friend Bill is with me. He says do you give me permission to speak in front of your brother. I quietly and shakily voice my brother is deceased, this is friend but ok. Where is my husband I think to myself. Dr goes on to tell me that I suffered a massive brain stem stroke. The main artery to the circle of Willis formed a blood clot and was bleeding into brain and something in regards to a dissection. I recall saying are you serious I'm only 34. Unfortunately yes, and we were mislead and didn't give you the (special stroke drug). I was at a loss for words. Critical I was advised. Bill is now calling my parents and husband. I'm at a loss for words. It wasn't until alittle later I realized how truly bad off I was. I mostly just slept in my private room with no lights or tv, sun shades on cause of eyes. I couldn't even push myself up in a bed. Legs and arms were useless. I couldn't grip a utensil or writing device. I had to have a catheter because I couldn't leave bed( but never felt it), I had to be fed, flopped around to prevent bed sores, I would choke on my own saliva. Then another disaster, I was rushed again to ICU, blood pressure sky rocketed, massive brain swelling and at its max, now fighting for my life and convulsions. I don't know how long I was in ICU, but then finally moved to room again. Physical therapy begins, learning to sit up, hold balance, shimmy body, use walker to chair, sit in chair, swallow food, use hands and fingers. It was painful and grueling. I felt so helpless and angry at what I had become. Before this I had a full time job, ran my home like it was nobody's business, was active, physical...and now this.
I was then released and moved to a rehab facility which is when my depression and anger set in. My eyes jumped, my vision blurry, light sensitive, I had a mid line shift in brain, horrible vertigo, no balance, week was both sides body, my left side couldn't feel the shots, no hot or cold sensation, my mind would make me feel upside down all the time. I constantly was vomiting. All making it hard for physical therapy. I was finally allowed to see myself. Droopy right eye, no longer a blonde thanks to loss of pigment now a brunette and my hair was longer. Swollen, bruised from shots. A hot mess. After three weeks I was released to go home and continue my path. Family and friends were amazing, helped cook, clean, watch my daughter. A medical bathroom was put in my home for me. I had a hospital bed. I had a small army surrounding myself and my family, and continued with my recovery. Overtime I was able to get out of the wheel chair and progress to a walker. I was always tired. Simplistic things now were so very difficult. I even had to relearn toiletry and using muscles for bathroom use. I lost my job, was placed on disability, not able to drive, dependent on family, friends, husband, my daughter was scared of me. Then one day, the army surrounding me started to fade out. Lives moved on. My army was living life again. I had to step up and push as hard as I could. I now use a cane, after three years can drive, I cook and clean though it takes me forever to do simple chores, relationships have changed. My memory is awful, I ask the same things over and over, I still fight panic attacks and depression, loneliness, and the feeling that I'm alone in my fight. I have a fear of people seeing me as I am now, my marriage has strained and suffered. My daughter still has a fear of my changes. Life just never went back to what it once was. I'm doing the best I can with my life now, trying to find some peace and contentment with the hand I've been dealt. Slowly trying to come out of my shell. RemIning at least a friend and coparent with my husband and understanding what my being sick cost him. The stroke didn't just happen to me you see, it affected so many people and relationships in my life. I had to stop hunting the Dr with the secret cure and answer to get the old me back. I tried radical approaches, physical therapy, ..etc etc. it gets expensive and discouraging. The word stroke was the farthest thing from my vocabulary, I didn't understand a stroke, the brain, what happens. Now, I understand all to well. I understand that the brain functions everything, and when your hard drive is fried, your rendered useless. I learned that people are either with you on your journey, or lost in the journey they have set forth for themselves or even a little scared of the unknown, and shy away from you out of fear. I am now in constant pain from central nerve damage, I say the words my brother said before his passing, "No Pain, No Gain". I try to find laughter and humor at my situation to comfort my daughter and even those intimidated by my disability. It's amazing how many people have a look of fear and shock seeing a younger person walk with a cane.
All I can do is keep trucking on, take my medications, get my INR weekly, and hope and pray to never suffer another stroke or for any of my loved ones to endure a stroke, and keep people sharp on what s stroke is, symptoms and signs. What I would have given for that second baby instead of this journey.
Sincerely,
Patience Jones