swim

  • Swim – Jack’s Mannequin – 2008 … this song gets me through the tough days, the lyrics are at the end of this post.  Just keep swimming. 

I received an e-mail from Northwestern University today reminding me to fill out my six month survey for their cervical artery dissection registry.  I am happy to report my symptoms have continued to get better, and the pain has remained a more steady, manageable level.   That is not to say I am pain free, far from it, but I am up and moving at least a few hours a day,  my migraines have calmed way down, and that is huge progress.  

There are still some questions as to why/how this dissection happened, and at this point it is hard to say.  These things can happen spontaneously, or they can happen from trauma.  My neurologist at Northwestern has referred me to a genetic counselor to discuss testing for a connective tissue disorder.  This could be what caused the dissection.  Knowing if I have a genetic condition won’t mean they can fix it.  It will just give us a better picture of why these things keep happening in my body, and the best treatment.  

I have a lot of referrals I am catching up with.  So far on the agenda this fall are genetic counseling, GI, an esophogram, a different kind of cardiologist than the last one I saw, and a follow-up at the Ability Lab.  

Here is some background on Cervical Artery Dissections (mine was the left vertebral):

from clevelandclinic.org

There are four main arteries that supply blood flow to the brain. Two carotid arteries and two vertebral arteries. The carotid arteries can be felt on each side of the lower neck, immediately below the angle of the jaw. The vertebral arteries are located in the back of the neck near the spine and cannot be felt on physical exam.  

The artery walls are made up of three layers of different types of tissue, each with a specific function. Dissection occurs when a tear in the artery wall allows blood to leak between the layers and separate them. The effect has been described as what happens to a piece of plywood that gets wet.

Cervical artery dissection is a dissection of any of the arteries in the neck.  It can involve a carotid or vertebral artery and sometimes multiple arteries can be involved.

Certain medical conditions such as Marfan or vascular Ehlers-Danlos syndromes – types of genetic connective tissue diseases – fibromuscular dysplasia or atherosclerosis (the accumulation of fatty plaque in the artery walls) put individuals at risk for developing cervical artery dissection. Cervical artery dissection in these patients is called “spontaneous,” meaning that it occurs without trauma to the head or neck.

Cervical artery dissection also can occur in the general population as a result of blunt trauma injury to the neck, such as a high-speed car accident or a fall, with chiropractic manipulation, or from hyperextension of the neck in sports or exercise. Cervical artery dissection has also been reported after heavy weight lifting.  

High blood pressure and smoking increase the risk of cervical artery dissection. Some cases of cervical artery dissection also have been reported after invasive diagnostic procedures.

Cervical artery dissection begins as a tear in one layer of the artery wall. Blood leaks through this tear and spreads between the layers of the wall. As the blood collects in the area of the dissection, it forms a clot that limits blood flow through the artery. If the clot is large enough to completely block blood flow, this can result in a stroke. Equally dangerous, pieces of the clot can break off and travel up through the bloodstream, limit the blood flow to the brain and cause a stroke.

Depending on where the dissection occurs in the artery, it may cause the artery to bulge in the area where the blood is pooling. This bulging, blood-filled area is called a pseudoaneurysm. If within the brain, these can be fragile and carry a risk of breaking and causing bleeding around the brain (called a subarachnoid hemorrhage); however if in the neck, these rarely break, though they may produce symptoms by pressing on surrounding structures.  Sometimes pseudoaneurysms can form after the initial artery dissection.

Sometimes a stroke is the first sign of cervical artery dissection and emergency treatment is required. More commonly, symptoms develop over a period of hours or days, even in patients who have traumatic injuries. Symptoms are general rather than specific and include headache, neck and face pain (especially pain around the eyes), vision disturbances such as double vision or a droopy eyelid, a pulsatile “whooshing” sound in one of the ears, known as pulsatile tinnitus, or a sudden decrease in sense of taste and/or weakness on one side of the body.

Stroke can develop hours, days or even a week after these symptoms begin. This is the most serious risk of cervical artery dissection.

Swim – Jack’s Mannequin 

You gotta swim
Swim for your life
Swim for the music
That saves you
When you’re not so sure you’ll survive
You gotta swim
Swim when it hurts
The whole world is watching
You haven’t come this far
To fall off the earth
The currents will pull you
Away from your love
Just keep your head above
I found a tidal wave
Begging to tear down the door
Memories like bullets
They fired at me from a gun
Cracking me open now
I swim to brighter days
Despite the absence of sun
Choking on salt water
I’m not giving in
You gotta swim
You gotta swim
For nights that won’t end
Swim for your family
Your lovers your sisters
Your brothers your friends
You gotta swim
For wars without cause
Swim for these lost politicians
Who don’t see their greed is a flaw
The currents will pull us
Away from our love
Just keep your head above
I found a tidal wave
Begging to tear down the door
Memories like bullets
They fired at me from a gun
Cracking me open now
I swim to brighter days
In spite of the absence of sun
Choking on salt water
I’m not giving in
I’m not giving in
Swim
You gotta swim
Swim in the dark
There’s an ocean to drift in
Feel the tide shifting away from this war
Yeah you gotta swim
Don’t let yourself sink
Just follow the horizon
I promise you it’s not as far as you think
Currents will drag us away from our love
Just keep your head above
Just keep your head above
Swim
Just keep your head above
Swim
Just keep your head above
Swim
Songwriters: Andrew Ross Mcmahon
Swim lyrics © Kobalt Music Publishing Ltd.

for good

While I can’t say I have been doing great, I have gotten some good news about my health that i want to share. I’ve also gotten some bad news, so I’ll share it all.

I saw my Neurologist a few weeks ago at Northwestern. He specializes in stroke and neurocritical care. He is a really great doctor and has agreed to take over my care for my vascular and neurological problems. This eases a lot of my stress, because for me, the less doctors involved, the better. He does want to do some more testing in the future. He thinks there could be a genetic factor going on that keeps causing all of my injuries. If I do have a genetic condition there is nothing more they can really do, as there wouldn’t be a cure, but we might be able to look at treatment options and preventative care from a different angle.

I saw a Cardiologist at Northwestern a few months ago also. I was diagnosed with tachycardia, a PFO (small hole in the heart) and a heart murmur. After wearing a monitor for a few days the doctor told me I am in no danger for my heart, and that I will just stay on my beta blocker to control my heart rate/ help with my migraines. My blood pressure is back to normal also!!!!

My pain is better.

It’s not good in any way, but it’s better.

When I started the pain management program, I was at a constant 8/10. My new constant is a 6/10. I still have days where I am at 9/10 and don’t leave my bed, but the days I am lower, I am able to do more.

I went for my follow-up at the AbilityLab (the pain program) and it didn’t go well. Not because my doctors are not amazing, but I was a big mess that day, and could barely talk through the tears.

I was 3 weeks late for my 4 week follow-up appointment, and I wasn’t even able to see all of my health care providers. I could barely move my arm that day, so doing my testing to see where I am at with strength didn’t seem like a great idea.

I’m not sure if I’m getting better or worse at this point. I didn’t really want to know that day. I go back in two weeks to check my actual progress. I saw my doc and psychologist and they helped get me back where I need to be. Staying positive. Keeping an open mind. Knowing it’s ok if I am getting worse, because my quality of life is getting better.

When I say getting worse, I mean my mobility and strength.

Those are my biggest issues right now.

With all the surgeries I have had, and all the stents and bypasses near my neck, and that darn ATV landing on my chest, there is a lot of damage that can’t be undone.

I still can’t sit comfortably for more than five minutes. I can’t stand for more than a few minutes.  I barely use my computer because I can’t type most days (yay iPhone) , my thumbs are way better than my actual arms/hands. Some days I can barely talk.

My muscles are a mess, my bones are a mess, my vascular system is rebuilt, but I don’t look sick.

That’s the issue.

Most people cannot understand what they cannot see. The comments I get from family and friends sometimes are downright offensive.

If you wouldn’t say it to someone with a mobility aid (wheelchair, walker, etc.) please do not say it to me.

I don’t use a mobility aid because I am lucky enough right now not to need one. I might in the future though.

I walk as much as I can. I workout at much as I can. I’ve lost over 60 lbs in the last year. I have not been trying for the last 40 though. That’s scary. I have been force feeding myself and I gained 4lbs this week. When my pain gets so bad I can’t think, I also can’t eat. I will just throw up so I don’t try anymore. On my ‘good’ days, I still have no appetite, but I make myself eat. Soup, bread, fruit and vegetables have been my main foods. I have trouble chewing when my pain is bad too, so it’s just a lot of factors.

I’m getting there… it’s just a long journey to healing, and to accepting the things that will not heal.

#onward

in bloom


It’s a Nirvana and gardening kind of day

In Bloom
Sell the kids for food
Weather changes moods
Spring is here again
Reproductive glands
He’s the one
Who like all our pretty songs
And he likes to sing along
And he likes to shoot his gun
But he don’t know what it means
Don’t know what it means
And I say
He’s the one
Who like all our pretty songs
And he likes to sing along
And he likes to shoot his gun
But he don’t know what it means
Don’t know what it means
And I say yeah
We can have some more
Nature is a whore
Bruises on the fruit
Tender age in bloom
He’s the one
Who like all our pretty songs
And he likes to sing along
And he likes to shoot his gun
But he don’t know what it means
Don’t know what it means
And I say
He’s the one
Who like all our pretty songs
And he likes to sing along
And he likes to shoot his gun
But he don’t know what it means
Don’t know what it means
And I say yeah
He’s the one
Who like all our pretty songs
And he likes to sing along
And he likes to shoot his gun
But he don’t know what it means
Don’t know what it means
And I say
He’s the one
Who like all our pretty songs
And he likes to sing along
And he likes to shoot his gun
But he don’t know what it means
Don’t know what it means
And I say yeah
Songwriters: Kurt Cobain
In Bloom lyrics © BMG Rights Management

 

#onward

my story – part 13 (occupational therapy)

…so far I have made fishing, gardening, nails, hair (dying, cutting, styling, braiding), and anything else I can think of into occupational therapy.   Gardening has been amazing.  I am still learning to pace myself, when I feel good I tend to do way too much.  I am finding a happy medium.

oc·cu·pa·tion·al ther·a·py
noun
noun: occupational therapy
  1. a form of therapy for those recuperating from physical or mental illness that encourages rehabilitation through the performance of activities required in daily life. (dictionary.com)

I am trying to save this tree 

Ho Hey, The Lumineers 

I walked to the lake in between appointments and got a phone call that the contrast didn’t show up so I needed the scan again. After they had taken out the IV. Had to come back for 2 more IVs and 2 more CTs. Ain’t life grand 😂😂

I gave myself a #ChicagoCubs Manicure 💅

#gocubs

#onward

my story – part 9

… he never came back from Copperhead Road — Steve Earle

….that’s just the way I am 🙂 – Charlie Puth ❤️❤️❤️❤️

My new cat Javy Baez #allstar

He followed me halfway around the block 😹😹😹😹

This is what my playlist looks like for 30 min 😂 …. I use YouTube because it learns what you like, then makes you awesome playlists.

Funfetti !! 😊😊❤️❤️

Welcome back Kris !!!!!!! ⚾️⚾️⚾️⚾️⚾️⚾️⚾️

I think I figured out where Javy lives. He has a giant pit bull big brother named Bruno 😂… I name all the animals. I blame my mother.

#gardeningwithsnoop

 

Part 10 — >

Start from the beginning of “My Story”