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.

My Favorite New Accessory | An Uncommon Wood Watch by JORD

Raw Material.  Refined Design.

P1000070

I am a bit uncommon, so I am loving this very unique watch from Jord Watches.  The colors are beautiful, and the quality is stunning.  It looks nice next to the morning glories!

I have always been more into accessories than other fashion, and this watch is my new favorite piece.  It’s the Cassia Olive & Aegean Blue watch, and you can check it out on their site here.

I am also hosting a giveaway with Jord Watches … you can enter here for a chance to win!!

Even if you don’t win, you will still get a 10% off discount code.

Jord uses many different types of wood for their watches.  This one is made from Olive.  They also have a beautiful selection in Walnut, Zebrawood, Koa and Dark Sandalwood to name a few of my favorites.

They have beautiful styles for both men, and women.  They are a great gift idea, and conversational piece!  People always ask about something they have never seen!  I have had a number of people ask me about mine.  The aegean blue face is striking, especially on a sunny day in the garden.

You can also get them engraved… They were nice enough to engrave mine mine with SaraBink 🙂


Wooden Wrist Watch

maintain the pain

 

Yesterday I went back to the AbilityLab for a re-check. I’ve been really nervous for the tests, mostly because it’s hard to tell if you are getting better or worse when you are always in pain no matter what.

I saw improvements with everything!

One of the things I struggle with a lot is strength in my arms. My arms both get pretty weak at times, but my left is bad. Since I left the pain management program I have gone up 7 lbs of grip strength in each arm!

I went in with the mindset that even if I did get weaker, I feel better overall so it would be ok. I didn’t want to get upset if I got weaker, because it’s really hard to tell sometimes. I’m more careful with my arm than I used to be, I avoid certain activities with my left arm, but I am using it more overall in everyday functional things, which is a big improvement.

The gardening for occupational therapy has been great. It gets me outdoors, gets my whole body moving (gently) and I get to see pretty stuff like flowers and birds.

They measure a lot of our progress in how we feel we are doing. Every time I go there I fill out a few pieces of paper answering questions about my functioning, pain, attitude about the pain, sleep, everything.

Everything is better than it was 2 months ago.

Pain level is steady, but getting more manageable. Sticking to my workouts helps a lot. I have a few I do everyday and a few I do a few times a week. I modify what I need to. Playing in the mud instead of using puddy for example. It’s more fun to me anyways.

I got a few new modifications to add. A few of my shoulder movements still trigger really bad pain, so I’m moving those to the floor for stability. My scapulas are ‘winged’ which is not good, but hopefully will continue to get better over time.

I saw 3 different therapists, physical therapy, occupational therapy, and the pain psychologist. As usual they were all awesome. I’m so glad I found this place ❤️

#onward

 

Maintain the Pain – Miranda Lambert 2009

I put a bullet in my radio
Something just hit me funny I don’t know
Just pulled the trigger going down the road
You slammed the door and knocked me off the wire
Been walking lines and you’ve been burning tires
Slow and uneasy ain’t that what you like
It’s insane
It’s in vain
You stay to maintain the pain
I hear your name and man it burns a hole
I swear I hate you but I can’t let go
The kind of damage that you can’t console
It’s all in vain
It’s all insane
I swear you’ll stay
I swear you’ll stay to maintain the pain
It’s all in vain (I hear your name and man it burns a hole)
It’s all insane (I swear I hate you but I can’t let go)
I swear you’ll stay (The kind of damage that you can’t console)
I swear you’ll stay to maintain the pain
Maintain the pain
Songwriters: Miranda Lambert
Maintain the Pain lyrics © Sony/ATV Music Publishing LLC

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

the house that built me

My mom’s garden is amazing. My parents bought this house almost 30 years ago.  It is over 100 years old, and somehow gets more beautiful every year (thanks to my mom).

raven
Her garden is amazing

This used to be my dad’s pond. My mom filled it in and made it into a garden 🌺

I still have similar handwriting… left handed problems (1988)
Caught a 787 at ORD crossing the bridge

Had to go visit my middle school! South Cardinals for life!
My dad’s elementary school – Our Lady of the Wayside

Denny was my dad ❤️
Roxy

Rocky the squirrel

Beck the stray cat

I enjoy the shade — always
Monarch

Monarch

Hummingbird

Raven brought a bird in to show me… it flew around the living room for 20 minutes before I helped get it out!! Raven likes to eat them

#onward

you can’t always get what you want

 

You Can’t Always Get What You Want
I saw her today at the reception
A glass of wine in her hand
I knew she would meet her connection
At her feet was her footloose man
No, you can’t always get what you want
You can’t always get what you want
You can’t always get what you want
But if you try sometime you find
You get what you need
I saw her today at the reception
A glass of wine in her hand
I knew she was gonna meet her connection
At her feet was her footloose man
You can’t always get what you want
You can’t always get what you want
You can’t always get what you want
But if you try sometimes you might find
You get what you need
But I went down to the demonstration
To get your fair share of abuse
Singing, “We’re gonna vent our frustration
If we don’t we’re gonna blow a fifty-amp fuse”
You can’t always get what you want
You can’t always get what you want
You can’t always get what you want
But if you try sometimes well you just might find
You get what you need
I went down to the Chelsea drugstore
To get your prescription filled
I was standing in line with Mr. Jimmy
And man, did he look pretty ill
We decided that we would have a soda
My favorite flavor, cherry red
I sung my song to Mr. Jimmy
Yeah, and he said one word to me, and that was “dead”
I said to him
You can’t always get what you want
You can’t always get what you want
You can’t always get what you want
But if you try sometimes you just might find
You get what you need
You get what you need, yeah, oh baby
I saw her today at the reception
In her glass was a bleeding man
She was practiced at the art of deception
Well I could tell by her blood-stained hands
You can’t always get what you want
You can’t always get what you want
You can’t always get what you want
But if you try sometimes you just might find
You just might find
You get what you need
You can’t always get what you want
You can’t always get what you want
You can’t always get what you want
But if you try sometimes you just might find
You just might find
You get what you need, oh yeah
Songwriters: Keith Richards / Mick Jagger
You Can’t Always Get What You Want lyrics © Abkco Music, Inc