(posted at StokeNetwork.org Stroke Survivor Message Board on March 29, 2005)

Good morning to all -- I am beginning my fourth month of recovery following a right hemisphere cerebral hemorrhage stroke that I survived on December 28, 2004. My symptoms of severe, sudden onset headaches began on Christmas Day and I remember praying that I would not die on Christmas -- our family has experienced a variety of traumatic events on holidays and I did not want Christmas to be one of them.

I have a lifetime history of headaches, but these were not "normal" headaches for me. Initially, I took my normal prescription for headaches, and tried to get some rest -- my husband and I were up late wrapping presents on Christmas Eve after returning home from dinner at our daughter's house. We thought that I might be just exhausted -- I am an elementary teaching assistant who worked in a life skills class, and I attend college fulltime, so I had been shopping and busy planning for Christmas on the days just prior, plus we had kept our two young grandsons overnight on December 23. My husband -- who had only recently returned to his job as a teaching assistant in an alternative school after suffering two heart attacks in October -- believed that I was just overtired. We checked my blood pressure but it was not excessively high.

That next day, Sunday, once again I had a severe headache -- just like on Christmas morning, the headache hit me as I was having a bowel movement. I was not straining -- I have I.B.S. and often have diarrhea versus constipation. The headache attacked suddenly both times and I could not barely walk out of the bathroom. I called my family doctor and talked to the physician on call -- I explained my symptoms and expressed concern that I had an aneurysm or something. He recommended that I take my headache medicine -- I advised that I wanted to make my doctor aware in case I went to the hospital. Again the headache subsided and I thought I was just freaking out for no reason.

My mother and my aunt had both died of strokes in their late fifties -- I was 49, only two months from 50.

On Monday the same scenario occurred. This time we went to the emergency room -- five miserable hours waiting just to be seen with my head covered under a dark blue flannel blanket because my head hurt so bad. Finally I was taken back for an evaluation -- there were no beds in the emergency room so my cot was "hallway bed 12" placed right next to double doors with no privacy. The ER doctor did not seem to take my headaches very seriously, and I stressed my family history of fatal strokes. Immediately I was given a shot of painkillers and eventually taken for a C. T. scan -- later I had a spinal tap.

The ER doctor dismissed any correlation between the headaches and bowel movements. Another five hours later, the doctor tells my husband and I that he saw "nothing life threatening" even though there was a little blood in the spinal tap (he claimed it was just what he would expect to see from the pinprick) -- my white cell count was elevated but he didn't think that was important -- and the C. T. scan didn't show anything unusual. He gave my husband a flier on tension and sinus headaches -- this was an insult because we had explained that I am an expert on headaches, having suffered them my whole life. In the end, I was released to go home after another injection of painkillers.

On Tuesday, again the same scenario. I called my family Physician and explained the entire situation -- actually my husband had to talk to her because I was so incapacitated with the headache pain. My doctor said that all she could do was go by the doctors examination at the ER the night before -- she called in a prescription for Vicodin... my husband brought it home and after taking the pain medicine I fell asleep -- the headache subsided again.

That evening I felt well enough to hook up my new DSL connection on my computer -- it was very late when I finished and I crawled into bed around 1:00 AM...

Bam! Sudden severe headache! I started to moan and called for my husband -- he asked what happened and I said "my head hurts!" -- I was literally writhing in pain on our bed. As he stood in our doorway watching and talking to me, suddenly I felt my left foot go numb and the paralysis came up my left side in seconds until I was completely paralyzed. Petrified, I told my husband "oh my god, I'm having a stroke -- call 911!"

I never lost consciousness and remember almost every detail during and after the stroke -- I was taken back to the same emergency room and then transferred immediately downtown to the medical center where a stroke team was waiting. I spent three days in ICU -- I had a right hemisphere intracerebral hemorrhage that was inoperable because the bleed originated deep inside my brain. The angiogram did not detect the cause of the bleed -- my neurologist told my family that the rupture had closed back up so he could not determine exactly where it was.

This makes me feel like a walking time bomb -- my suspicion is that I had a congenital defect, a weak spot in a brain vessel that finally burst. My theory is based on my history of headaches, which began as early as eight years old. Nonetheless, I cannot help but wonder and worry if another stroke is just waiting to happen.

I was in the hospital for over a month -- four weeks in the rehab unit. I was unable to feel or move anything on the left side -- I could not sit up in bed and felt like a weeble-wobble. Fortunately, my speech was never affected because it was a right hemisphere stroke. However, I had left side neglect and cognitive impairments that took a while for me to understand.

Of course now I know more about strokes -- there was a distinct correlation between the sudden onset of a headache and normal straining during bowel movements (or sex), that elevated white cell count is indicative of an impending stroke and that any blood in the spinal tap can signal a cerebral bleed. I am angry at the ER doctor for not consulting a neurologist or taking my headache more seriously -- perhaps this stroke could have been avoided if I had been admitted to the hospital overnight for closer observation and additional tests.

I insisted on staying enrolled in college for this spring semester and changed all my classes to online courses -- I was still in the hospital when the semester started so I was late ten days but my professors were all very cooperative and understanding. I was a straight A student -- a member of the honor society and phi theta kappa -- I knew I could not return to work right away that I was sure I could still do my class work... I found out about voice recognition software installed in Windows XP on my computer, which allows me to write with minimal use of the keyboard -- thank heavens, because typing one-handed was difficult at best.

To my dismay, I soon realized that I could not complete all four classes -- I am struggling with the two I stayed enrolled in. I did not realize how tired and exhausted I would be at home. I was unprepared for the lack of energy and the extent that my cognitive abilities, attention span and communication skills were affected by the stroke. I am maintaining an A. average in my English Technical Communications class -- I am a writer, and English comes naturally to me.

Unfortunately, Philosophy is not so easy -- my biggest challenge is that the textbook is a small paperback and not available in any other form such as on tape. It is very difficult and almost impossible to hold the book with my right hand, read it and retain the information. I will be lucky to pass this class with a C. -- which will be my first course with less than an A.

Yesterday it was three months since the stroke. I have been in outpatient therapy since February and can walk a few steps with assistance or with a quad cane. My balance has improved but I am still in danger of falling -- I am very careful because it is not fun to fall. I cannot use my left hand but I can open and close my fist at will and move my left arm up and down -- I can transfer myself out of my wheelchair to anything I want to -- I can even make my bed alone and I can stand steady enough to cook hot malt o' meal on the stove, which was a major accomplishment even though it took an hour from start to finish! I am able to dress myself in selected attire -- easy-on. easy-off tops, elastic-waist bottoms.

I went to my eye doctor yesterday and have brand new contacts that are extended wear so I can sleep in them for up to two weeks -- this will make my life easier because I needed help to put my contacts in everyday. During the exam, my peripheral vision was checked and my left side neglect seems to have improved. I did notice however that I failed to cross my t's or dot my i's while filling out their forms -- left side neglect causes the brain to forget such things.

Depression comes and goes -- I cry easily and more often than before, mostly from frustration and overall distress. The loss of independence has been hard to accept -- I have always taken care of every one and everything so it has been difficult to depend on others to take care of me. Before the stroke, I was working fulltime and going to college fulltime, actively involved with my grandchildren, and enjoyed spending my free time with my husband of 30 years. For the first time in our married life, he had to handle our finances and take care of things I had always done. He's the cook in our household and has been doing grocery shopping and laundry for years, but I had always managed the money and bills. I am very proud of him for doing such a good job -- but the stroke was very difficult for him as well.

On April 4, my family leave expires at my job and I will probably lose my position because it is obvious I cannot return to work in the foreseeable future. I am extremely upset over this loss because I love my job and working with children. I intend to continue with college while I work on recovery -- I am going to ask for an extension of my leave and hope I can return to work by fall. My doctor tells me that recovery can take a long time and there is no guarantee of the extent I will recover -- I have applied for disability just in case I can't return to work.

I apologize for the long "story" -- I have been meaning to post for a long time. Today is my first day at home alone without a care giver (a close friend and our grown children have taken turns staying with me the last two months)... I am doing fine with my trusty dog companion nearby and my phone within reach! I won't try any "acrobatic tricks" but I will be cooking malt o' meal!

I hope everyone has a good day and thank you for listening!

(Written in an e-mail and sent to friends and family on March 31, 2005)

Today... I thank God for my husband -- before he left for work, he fixed my lunch and put it in a sack or I could reach it, measured dry Malt O' Meal and put it in a measuring cup, measured water and poured it in a pan on the stove, ground fresh coffee and prepared the coffee pot so all I had to do was turn it on, set out a fresh bottle of water and loosened the top so I could open it easily and made sure there were no obstructions for my wheelchair in the house.

Today... I thank God for the strength and ability to get out of bed alone even though it is exhausting and hard, for giving me the courage to stay home alone,
 find a way to dress myself, make it into the kitchen and stand long enough using a cane to cook my breakfast of Malt O' Meal, toast, make my cup of coffee -- and the skills to get all of it back into the living room and onto my tray so I could eat.
I thank God for healing my weak and paralyzed left side enough for me to accomplish difficult tasks that were so easy before December 28.

Today... I thank God for patience when I am frustrated, comfort when I grieve my losses, faith when I am discouraged, hope when I am depressed,
determination to overcome obstacles, and the spirit to resist despair.

Today...  I thank God for the support of my loving family, the incredible generosity and kindness given to me by my friends,
and the abundance of blessings that enrich my life in so many ways.

Today... I thank God for this e-mail and the accessibility of the voice recognition software that allows me to reply.

 

(posted at StokeNetwork.org Stroke Survivor Message Board on June 8, 2005)

I am glad I logged in today. I haven't visited in awhile, though I have a link to StrokeNetwork on my own personal website... I have been in various stages of realization, denial, acceptance, anger and coping since the stroke on 12/28/04. Only a little over five months now. I was, to my shock and gratitude, approved for SSDI the first application and it begins in July. I went, by wheelchair escorted by my husband, to my annual work evaluation three weeks ago - my principal wants me back, my elementary special ed. students need me back, I loved my job and my kids. I changed career paths three years ago, took a 40K/yr. pay cut, and started college to be a teacher - so my husband, also a teaching assistant, and I could have all that time off together in our fifties and sixties.

I turned 50 on Feb. 21, crying in my wheelchair. I have since regained some left side movement in my arm and hand, but no fine motor skills. I can walk very short distances with a quad cane, but I am getting a motorized wheelchair. I sleep a lot - I am tired. I know what the heck is going on most of the time, but I get distracted, unfocused, blurry vision, attention-deficit, and what happened to my memory??

Yes, I can carry on an intelligent conversation - my review was 4.87/5.0 - I haven't worked since Christmas break and I was good at my job! I kept saying I could still work at the school even in my wheelchair - it would show the kids that life isn't over because life deals out the handicapped card. I even attempted four online college classes this past spring - semester started while I was still in the hospital - finished only one but earned an A.

I can fake being "okay" on the surface. I smile, laugh at myself, make "handicapped girl" jokes with my loving husband, express a positive attitude. But I can't work. I can't even drive!

Fact is, I am - as I have learned here today - medically retired. I am not physically, mentally, or emotionally in the position to work at any job, much less in a challenging role working with special-needs students. I am grateful to dress myself, take a shower alone, pour a cup of coffee. I am grateful my speech was not affected.

I am grateful to get myself in and out of bed, to lift my arm, open my hand. There is celebration in being alive after a brain-bleed.

On the other hand, I recently told family members that perhaps this is, in some ways, a blessing. I have wanted to be a writer all my life. I have the education, talent and creativity - all I lacked before was time and freedom from worrying about an income. SSDI eliminates that worry. So why do I still feel guilty? God has always provided when I trust His mysterious ways... so now, medically retired, will I find the brain-power to write?

This stroke put up some barriers in my life, and removed, indirectly, others. I don't look disabled, except for the wheelchair. I think it is better termed "mis-abled"... or "adapt-able." After all, we are survivors. Blessings to everyone!