Monday, November 23, 2015

"Woe is me" and Samuel Johnson

Over the weekend, I did a blog post about a hospital stay last week. I was not trying to an alarmist or to say "woe is me." Rather, I try to use by blog to describe my stroke journey.

My blog is published in different ways. Usually, it is just in the blog sphere. That is it. The audience is limited to readers who find it on my blog. Sometimes, I put my blog on Twitter where I have two accounts: My personal account but also the Idaho Aphasia twitter account. I have sometimes posted my blog on my Facebook account. And, also, the Idaho Aphasia Facebook page.


My last blog post was about the hospital stay. In that blog posts, I wrote "I have a condition called Fibromuscular dysplasia. FMD is a progressive twisting of the blood vessels throughout the body. It causes abnormal growth within the wall of an artery. It is rare: Fewer than 200,000 US cases per year.” It can't be cured, but treatment may help like taking blood thinners.


I ended by writing that "I want to see my son grow up.  I am petrified and angry. My body is not 'mine and has a life on its own. It seems I am a bystander in my head. Just waiting."


When I posted that last Friday, I got some instant negative feedback. A friend basically said "STOP! You need to stop living in the past and reliving your strokes. Embrace the fact that you are alive and awake."


I was surprised. I deleted my Facebook and Twitter posts about this incident. I did keep the Idaho Aphasia Facebook and Twitter posts. Those are limited to people who really understand what stroke survivors go through. 

I have really thought about my friend's admonitions. I am really living in the past? Is my blog selfish and self-absorbed?  


When one of the trendy Facebook "things" about "what to you post most on Facebook, "Stroke" was my 1# thing. Is my self worth just "stroke?" Has my identity become "Oh...another stroke post. Move on." 


Perhaps I do too much about my strokes. 


Of course, I know that dissection did NOT cause a stroke. However, I had a "MRI that showed last week that recently – May of 2014 to perhaps August of 2015 – I had a right side carotid dissection."


Samuel Johnson wrote "The prospect of being hanged focuses the mind wonderfully." 


In other words, I am scared. I am focused on this MRI. It will take some time for me to forget this latest scare.


So, for now, I am sorry for expressing my worry in a public way. 
When I quit stressing about the possibility of having another stroke, I will think about this advice.  

Friday, November 20, 2015

My Fibromuscular dysplasia is heart wrenching

 When you have a stroke – or two and seizures like me – a simple headache causes worry. In the back of your mind, your damaged brain thinks “it is happening again!”

Recently, I had some severe headaches. They were different from the headaches when I had my strokes and seizures. These were a pounding ache on the left side and the top of my head.

When they started on a Sunday night, I thought “they will go away.” They did not. I took several painkillers. My head kept aching.

Finally, on Wednesday, I went to the hospital where I had a MRA and a MRI. The good news, I have an intense sinus infection. I forgot that a headache could be something else other than a “brain attack.”

However, we discovered that had a brain incident. Or I did NOT have a brain incident.

To explain, here is what I know about my brain.

I have a condition called “Fibromuscular dysplasia.” “FMD” is a progressive twisting of the blood vessels throughout the body. It causes abnormal growth within the wall of an artery. It is rare: Fewer than 200,000 US cases per year.” It can't be cured, but treatment may help like taking blood thinners.

In my case, it seems that my left carotid artery maybe became elongated or kinked causing my ischemic stroke.

Studies I have read that “Patients with FMD in the carotid arteries typically present around 50 years of age.”  I was 50 years old when my strokes happened.

My strokes, almost 4 years ago, have been devastating.  20% of my brain is dead. I have aphasia and apraxia. I cannot read very well anymore. I cannot hand write. Math is “gone.” But, I can read financials. My right peripheral vision is diminished, but I can drive. I have no visible disabilities. Yet, I get exhausted when I concentrate. Often times, I get headaches when I go to meetings.

Dunham MRI and MRA 11-18-15
Nevertheless, I am grateful that my recovery is heralded to be a “miracle.” Many people forget that I had strokes. Sometimes, I forget it myself. My carotid dissections (my strokes) are healing.   A dissection does not mean that you always have a stroke.  In my case, that happened.

Until that sinus infection. The MRI showed not just my January of 2012 strokes but an unanticipated brain incident that was undetected.

How can that be? The MRI shows TWO carotid dissections. My left side carotid dissections that caused my shocking strokes almost four years ago.  That left me with all of my brain deficits. 

But now, the MRI shows that recently – May of 2014 to perhaps August of 2015 – I had a right side carotid dissection. But that dissection did NOT cause a stroke.

I would not even know about it at all other than the headaches.  Would it be better that I would never know about this brain incident?  For me, I always want to know.

Since the MRI two days ago, I have been scared and depressed. Certainly, my Plavix has saved my life. What the next time? What if next brain attack is so severe that Plavix will not stop a massive stroke?  Will there be another “next time?” How to prepare?

I want to see my son grow up.  I am petrified and angry. My body is not “mine” and has a life on its own. It seems I am a bystander in my head. Just waiting.

This situation is just heart wrenching. Or artery wrenching.

On the other hand,  the good news is I'm fine and did not have a stroke or a seizure. Blood thinners like Plavix are life savers. Literally for me.

During the MRI/MRA process, they piped in Pandora for me. I listened to Pink Floyd's "Brain Damage" from the "Darkside of the Moon."

Ironic.