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.

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

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

my story – part 15 – cervical artery dissection registry

Even though I look healthy, I have some serious medical problems going on.  While my cervical artery dissection is healing very nicely, from my last scan, it still places me at being high risk for a stroke, and I still have “stroke-like” symptoms every day.   It can be scary when you don’t know what it is.  Now that I know a little more about it, it’s not so scary, but it will knock you on your ass.  I have been in bed for almost 3 days now.  Neurological disorders are NOTHING to brag about!!

 

don’t you worry child


Don’t You Worry Child – Andrew Garcia, Alex G, Andy Lange & Chester See 

I still can’t listen to this song without crying, but it’s good tears, and good memories.  This was released in 2013 and I have had it on my playlist since then … the meaning has changed, and that is what I LOVE about music.  I always loved this song because it was beautiful.  When my Dad passed in 2016, it became a very emotional song for me.

There was a time, I used to look into my father’s eyes
In a happy home, I was a king I had a golden throne
Those days are gone, now the memories are on the wall
I hear the sounds from the places where I was born
Up on the hill across the blue lake
That’s where I had my first heart break
I still remember how it all changed
My father said
Don’t you worry, don’t you worry child
See heaven’s got a plan for you
Don’t you worry, don’t you worry now, yeah
Don’t you worry, don’t you worry child
See heaven’s got a plan for you
Don’t you worry, don’t you worry now, yeah
There was a time, I met a girl of a different kind
We ruled the world,
Thought I’ll never lose her out of sight
We were so young
I think of her now and then
I still hear the songs, reminding me of a friend
Up on the hill across the blue lake
That’s where I had my first heart break
I still remember how it all changed
My father said
Don’t you worry, don’t you worry child
See heaven’s got a plan for you
Don’t you worry, don’t you worry now, yeah
Ooh, ooh, ooh, ooh
Ooh, ooh, ooh, ooh
Ooh, ooh, ooh, ooh
See heaven’s got a plan for you
Don’t you worry, don’t you worry child
See heaven’s got a plan for you
Don’t you worry, don’t you worry now, yeah
Ooh, ooh, ooh, ooh
Ooh, ooh, ooh, ooh
Ooh, ooh, ooh, ooh, yeah
Songwriters: Steve Angello / Axel Hedfors / Michel Zitron / Sebastian Ingrosso / John Martin Lindstrom

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” 

First day at Shirley Ryan Ability Lab!

I felt like I went back to school today and It was really awesome. 😀 I got a fancy book bag and went to classes about mindfulness, Bio-feedback, PT, OT, Pain Psychology, and saw the doc. I really like this approach they take at the Shirley Ryan Ability Lab. Basically I am assigned one hour increments , and I see a different doctor or practitioner for each hour. Some are 1:1, some are group activities. I am pretty sure we start therapy in the heated pool tomorrow, so I am all here for this ! It was a long day, but I think I will sleep well tonight 💤 😴

It’s going to be a busy few weeks, but I think it’s going to be very worth it!!

#Onward!!

We’re not Gonna Take It!

“I call these photos: Being a Rebel” 🤣😂🤣

I love this song. I’m referencing it because it feels pretty good to have a few Doctors who are working with me and helping me figure out what’s wrong. As for the rest of them… I’m done! The only one left to find is a good Primary Care Doctor, and I am going to go to Northwestern for that. I think it makes the Doctors job easier and my job easier for them to have all of my current records available. I can’t keep traveling with a binder of test results and diagnoses to try to convince these doctors I am in pain. I have to travel over an hour to see these doctors now, but it is well worth it.

I received a letter in the mail from Northwestern today asking me to be in a research study.  This is the second one they have asked me to be in so far.   The first one is “Prospective, Observational Cervical Artery Dissection Registry.”  This new one is “Efficacy of Gadoterate in Diagnosis of Vascular diseases Using MRA.”  If these sound like they are in a different language I am pretty sure they are!

The first one is described on the paperwork I was given as, “We are asking you to take part in this research study because you have a cerebrovascular abnormality called cervical artery dissection that requires evaluation and/or admission to Northwestern Memorial Hospital.  This research study is a registry, which is a collection of observational information regarding patients with this abnormality.”

Basically, they will follow-up with me intermittently to check on my status, and are doing this with others with similar “abnormalities.” They will see how I am doing with symptoms and pain every few months.

The second one, which I just received an invitation to is described as, “You are being asked to participate in this research study because you are a patient at a Northwestern Memorial Healthcare Corporation entity, who recently completed a Magnetic Resonance Angiography (MRA) scan.  This scan was ordered by your doctor  to evaluate the blood vessels in your neck, chest or abdomen using the contrast agent gadobutrol which is the standard of care contrast agent at NMH.  Contrast agents are chemicals that are injected into a vein and which then travel through the bloodstream.  These chemicals act as dyes to make MRA images brighter.  An MRA is a type of magnetic resonance imaging (MRI) scan that uses a magnetic field and pulses of radio wave energy to provide pictures of blood vessels inside the body.”

I have gotten SO many CTs and MRIs/MRAs with contrast over the years.  It is how they have diagnosed all of my vascular issues, including this most recent one (they diagnosed my dissected artery with a CT with contrast).  I am weirdly excited that they asked me to participate in this one.  Not only do I get a free MRI, but they will also pay me $50 to participate.  #WINNING !! It says also in the notes sometimes they are able to diagnose unknown conditions with this study, and if they do they will notify me.  I will have the MRI/MRA next week, I figure if I can help out in some small way, especially in diagnosing vascular problems, you can sign me up!

#Onward!

Here

I’m an INFJ. I feel like that explains a lot about me. If you aren’t familiar, it’s a personality type. There are 16 different personality types under the Myers-Briggs Type Indicator (MBTI). I’ve always known I was a little different, but I came to find out I am ever rarer than I ever knew! Only about 1% of the population are INFJ, so if you know me and think I’m a little different but couldn’t pinpoint it, here you go 🙂  I always thought so too!

I just learned about personality types last year and it has helped me learn a lot about myself, and why I do the things I do. If you have never taken the test before, take it here…MBTI Test and if anyone else comes up INFJ, tell me!! I suspect a few family members (especially my Dad’s side, the Gaucks) are also INFJs and probably my Dad before he passed away also, or at least something similar.  I think my Moms side (the Andersons) are a more Extraverted bunch, so they are probably E -Extravert something.  Either way if you take it, let me know what you got!

INFJ stands for (I) Introversion (N) Intuition (F) Feeling (J) Judgement.

Basically, The MBTI says there are a few things that ‘motivate’ everything we do;

____________________________________________

From www.myersbriggs.org/

Favorite world: Do you prefer to focus on the outer world or on your own inner world? This is called Extraversion (E) or Introversion (I).

Information: Do you prefer to focus on the basic information you take in or do you prefer to interpret and add meaning? This is called Sensing (S) or Intuition (N).

Decisions: When making decisions, do you prefer to first look at logic and consistency or first look at the people and special circumstances? This is called Thinking (T) or Feeling (F).

Structure: In dealing with the outside world, do you prefer to get things decided or do you prefer to stay open to new information and options? This is called Judging (J) or Perceiving (P).

___________________________________________

The test asks a bunch of questions based on Carl Jung’s Psychological Theories from the 1920-1950s and then tells you your personality type based on your answers.

I find all of this to be so interesting because my personality type matches me so spot on.

I’m not sure if I took this test when I was 22 if I would’ve gotten the same results, but after my accident I became much more Introverted, probably because I was forced to. I like being around people, but I need my alone time or I am physically and mentally exhausted. I recharge by sleeping and by spending time alone reading or listening to music. These are key Introvert traits.

Some of the other traits that I relate to are enjoying/recharging from alone time, being exhausted being around a lot of people (like needing a day to recover after a big event, but this also has to do with my health so who knows!!), people I don’t know think I’m quiet/shy or mean (and often a bitch/mean due to the Introverted curse ‘Resting Bitch Face’), but I’m usually just quiet when I don’t really know someone. I read somewhere that Introverts are too busy thinking, ALL the time (another Introvert curse, overthinking) and don’t usually pay attention to the expression on their face, this leads to RBF 🤣😂

This isn’t the same as being ‘shy’, because anyone that knows me or has known me a long time will tell you I’m not shy. It just takes me a while to open up a little. Everyone has some degree of both Introversion and Extraversion but mostly we all lean more towards one. I go way towards Introversion, especially when I’m not feeling well!!

The part about decision making is very accurate for me also. We all make decisions based on either logic (T – thinking) or on people and special circumstances (F – feeling). It might not always seem like it, as INFJ’s are pretty misunderstood, but my decisions are almost always made based on feeling and circumstances. This isn’t always a great trait, as it can get me into trouble, but nonetheless, it’s me!

_____________________________________________

From Trulity.com 

“INFJs often appear quiet, caring and sensitive, and may be found listening attentively to someone else’s ideas or concerns. They are highly perceptive about people and want to help others achieve understanding. INFJs are not afraid of complex personal problems; in fact, they are quite complex themselves, and have a rich inner life that few are privy to. They reflect at length on issues of ethics, and feel things deeply. Because Counselors (The name they call INFJ’s, also called the Advocate on other sites) initially appear so gentle and reserved, they may surprise others with their intensity when one of their values is threatened or called into question. Their calm exterior belies the complexity of their inner worlds.

Because INFJs are such complex people, they may be reluctant to engage with others who might not understand or appreciate them, and can thus be hard to get to know. Although they want to get along with others and support them in their goals, they are fiercely loyal to their own system of values and will not follow others down a path that does not feel authentic to them. When they sense that their values are not being respected, or when their intuition tells them that someone’s intentions are not pure, they are likely to withdraw.”  

_____________________________________________

Add this to my Chronic Illnesses and Pain, and we have a recipe for a homebound geek who watches Star Wars on Friday nights.  I really do this, but I don’t want to do it all the time 😂😃 , so know if I am making an effort to get out, to see you, to do anything other than stay in my bed blogging, reading and watching garbage on TV, it takes a huge effort.  And if I have not seen you in a while, I am trying to catch up with everyone, but I only have a few good hours a day lately and most of those hours are spent at Doctor visits…. At least I have a lot of free time now !!

___________________________________________

The song is Alessia Cara, Here.  She is a newer singer and a self described (in this song) Anti-Social Optimist, and an Introvert and I love her! It describes being an Introverted person pretty well!  Also… the part about a friend in the kitchen Gossiping about her friends… seriously girls.  This is why I cannot be friends with some people any longer.  Why cant we all just get along. 😂😬😘

#ONWARD

Get Up, Stand Up

I have a really big variety of music I listen to. I think I pick up a lot of what is around me, and then I listen to it until I know every word and every song LOL, it’s just something I’ve always done! I know the entire Hamilton Soundtrack and I have not even seen the play yet!  In fact I can probably sing 10 full musicals start to finish.  I think I missed my calling when I was young 🙂  Right now I am obsessed with Cardi B’s new music so expect a blog post for one of those songs soon.  My parents listened to everything growing up and all of my family members are big music fans too 🎶 🎵 🎼. My parents went and saw Bob Marley when they started dating 😂😃.

This song is kind of perfect for this week because I stood up to a Doctor yesterday, and while I ended up deciding I’m not going back to him, and told him that, I’m glad I did. I need Doctors I am comfortable with. This song is also great for pretty much everything going on in this country lately 🤣🤣

As someone who sees Doctors almost every day as of lately, I think it is my right as a patient and human to be treated with a little dignity and respect. This Doctor (Primary Care) didn’t want to fill out my forms for work and told me to never bring them back, to give them to my other Doctors. I think maybe I offended him because that was pretty much my only purpose for the visit, but that was all I needed!! I also think he just didn’t want to deal with paperwork. Great, I don’t either!! 😂

I have only seen him twice before so I don’t have many records to transfer and didn’t think he was all that great to begin with, but this is just getting ridiculous to find Doctors that will help. I need the form so I can keep my job and Insurance for my husband and me. No big deal. While this is probably the Doctor’s last priority, it is my first, and I will find someone else I can rely on to help me with paperwork. I have had good Doctors in the past who have been helpful with it, but of course they were unhelpful in other ways. He did fill it out for me, but now I need a new Primary Care Doctor, again 😂. Taking suggestions if anyone has one they love in the Chicago area. If I don’t find one nearby I am just going to transfer everything to Northwestern. I think that will make my life easier, other than the hour it takes to get there, this guy was down the street.

In better news. I love my new Pain Management Doctor and she is working with me, so I will focus on that.

#ONWARD

Just Breathe …

I was reminded yesterday to Breathe. Sometimes I forget that. This can get so stressful and overwhelming sometimes, but always important to remember. Even more than just remembering to Breathe, I’m going to start incorporating more meditation into my day. When I am in a ton of pain, and stressed out, it is very easy to start feeling overwhelmed.

This has not been a great week so far for pain. The new medication my Pain Management Doctor prescribed gave me a Migraine that lasted 5 days on and off, and it was completely miserable! This was an ER (extended release) Opioid, which I was hopeful about as it would mean only having to take one pill a day for pain, and having none of the Acetaminophen that is in the Norco that I was taking. I tried it for a week, and the Migraine would not completely go away, so I went off it, and am back on the original medicine. I am just glad I have a Doctor who is willing to work with me on this. I am already on so many medications, and have so many restrictions my treatment options are very limited at this point, but I love that she is willing to try something new and think outside the box. My Migraine is finally gone, now it has just turned into a lingering headache. For those not familiar with the different headaches, a Migraine is the kind where I cannot even get out of bed, a headache for me is just pain that I can kind of function, but still doesn’t feel good.

I went back to CBT (Cognitive Behavioral Therapy) this week also. I have had the same Therapist on and off since 2010, so that is nice that I only had to catch her up on the last year since I saw her, and not the last 8 years! She is the one that reminded me to Breathe 🙂 Going back to her was definitely a good decision. When I get stressed and overwhelmed she helps put things into perspective, and steers me in the right direction, like Meditating twice a day to chill out a little 🙂 I am a huge supporter of Therapy, so if anyone has any questions about how it can help if they have been thinking about it, please reach out, it is really helpful 🙂

Slowly but surely making some progress 🙂

**Also note: I am copying off Grey’s Anatomy and making my new Blog Posts song titles… so I will try to include the song on the page. Enjoy this one by Pearl Jam. **

#Onward

Another Saturday Night …

Well another one on the couch … we have been trying to go out all week, but I haven’t been feeling good. Tonight was going to be date night but my Migraine will not stay away and it leaves me being able to do nothing but enjoy the few hours I do feel ok 🙂

I had a few good encounters/interactions with Doctors, a Pharmacy, and kind of the Insurance company so I will take that as the win this week.

I saw my new Pain Doctor, and I loved her, so that was fantastic. This is the wife of the last guy I saw. I liked their practice, and the Nurses and staff have been really great, but I just couldn’t see getting along with the guy. I am so happy I liked her, and she seemed very willing to help and work with me which is soooooo great. She was wearing super cute Cowboy boots, and I LOVE Cowboy boots👢 so she mostly had me from the start 😊. For the first time in 8 years of pain I was prescribed a ER (Extended Release) pain medicine and it seems to be helping. It is taking some getting used to and has sent my headaches outta control but once those get more under control, I think this should be better. Once I can go off the blood thinners (months from now) she is going to try something on my neck muscles with Botox that I had never heard of, so as usual I will try anything, and am excited! I’ll see if she can do a few shots in a few wrinkles near my eyes too, maybe Insurance will cover that!!

Speaking of the headaches, they have been getting worse and worse and finally turned into a full blown Migraine on Friday. I ran out of my Medicine I take and the Neurology Specialist I saw this week couldn’t refill it for me, something about certain medications and certain Doctors and who knows with Insurance anymore. I spent all morning on the phone with my Primary doctor and the Pharmacy and they were talking to Insurance because Insurance will only cover 9 pills per month, and my Doctor asked for 30, and I literally only want one pill !!!!!!

The pharmacist was super helpful and talked to the Doctor and Insurance and after like 6 hours and John having to go to the Pharmacy twice I got my medicine and it went away. It just Keeps. Coming. Back.

Overall a good week, and getting there 🙏🏼😊❤️

#Onward!!

I’m really lucky

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I took the train to Northwestern today, repping the Cubs

I am really lucky.  Like really really really lucky.  Someone is definitely looking out for me.  Not only did I survive tearing my aorta, but I have also now torn a second major artery, and somehow escaped the worst case scenario again.   This can get frustrating, but I am really glad they found both before they turned into something really bad.  Again, I am REALLY LUCKY.

I went for my follow-up appointment today at Northwestern and it went so much better than talking with that last Doctor when I was in the hospital went.   I got a few more diagnoses and referrals, but I am overall very happy with how everything went today.  I saw a Nurse Practitioner today in the Neurology Stroke Program (I guess because of my dissection, and because it can cause a Stroke, this is the speciality I see now).   She answered all of my questions and explained everything really throughly and so that I would understand it, and I always appreciate that.  I pretty much have to take it easy for the next 3 months.  I will have a follow-up scan in July, and untill then we just let it heal.  I have no patience for “letting it heal,” so you can probably expect a whole bunch of Blog posting from me for the next few months being at home is already driving me up the wall.  This is actually the LONGEST I have ever been off work.  Every other time I have needed to take time off it has been for surgery and I healed and went back.  Even my initial accident, I went back after 6 or 7 weeks.   I have been off for two months now, and I am going to need to find some new hobbies because I got bored of TV weeks ago 🙂

So she said it’s going to hurt alot, and it is going to take time to heal, but it should feel better.  Hearing that helps of course!!!  I don’t think all of the pain is ever going to go away, but if it will come down a few notches, I am cool with that!  Tomorrow I go back to Pain Management.  Hopefully actually having this diagnosis will help this Doctor belive my pain and start to actually help me with it.   Right now, nothing is working  🙁

She also referred me to a Cardiologist, because I have some new Cardio related diagnoses to add to the list… I got a bunch of tests done while I was there that I have never had before, so I guess they found some new stuff, fun.   I have a Murmur, PFO (Patent Foramen Ovale, or a hole in the heart), and Tachycardia.  There are no appointments available until June 1st, but I am on a cancellation list, so I might be able to get in sooner.   It’s just one thing after another here!  Is this list ever going to stop???

After Northwestern, I had Physical Therapy.  I can’t really do much yet in physical therapy, but she worked on some of my muscles today, and that seemed to loosen them up a bit.  I got a bad headache after, but that happens alot lately, and is probably from this dissection.  The headaches have been coming back almost daily unfortunately.

Overall a good day of appointments, now just to find a way to feel a little better!

#Onward

Home from the Hospital

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I’m home from the hospital and I don’t even know where to begin….

This picture sums up how I feel about my recent hospital visit 🙁

I am so happy that I listened to my crazy body and went to the ER on Tuesday.  I couldn’t get out of bed all day, because the pain was so bad, and just as John  (my husband) was going to sleep I said I don’t think this can wait… and we headed downtown to Northwestern Memorial Hospital in Chicago.   It was an absolute nightmare from start to finish, but I think overall it was really good I went there.   Northwestern has a great reputation, and has amazing doctors, but honestly I have never seen such a shitshow in my life.  I had 25 Doctors coming to my room daily to ask me questions, but I was so lost the whole time.  They kept telling me things they were going to do, treatments, tests, medications etc.  and then the next doctor would come in and have no idea what I was talking about, and have a whole new plan.  I ask alot of questions, and am probably a pretty annoying patient but I still deserve to understand what is happening with my body, and after leaving there I have never been more confused.

We waited 5 hours just to get a room in the ER, they were pretty busy and had patients in the halls on gurneys, which is definitely not unusual for the ER there.  Right off the bat the ER doctor said they aren’t going to be able to figure out what is wrong with me, and all they could do was maybe help with the pain.   Great, so glad I drove an hour and waited 5 hours to hear this.   They were going to order a CT to make sure my stents and bypass were in place, but other than that I would just have to follow up with the Doctors I was already seeing.  I went there hoping they would just admit me and figure it all out, but this wasn’t looking good at this point.  The ER doctor wasn’t very nice, and didn’t really give the vibe that he wanted to help.   What else is new…

I had the CT and fell asleep waiting for the results.   The ER doctor came back in, woke me up and told me I had a dissected artery and that someone else would be in to tell me more.  I am half asleep and not really understanding, but I know that anything dissected is not good, especially an artery.

The next few hours were really confusing and scary, as they kept telling me they had to make sure I hadn’t had a stroke, and was being moved to the stroke floor (neuro).   They did an MRI of my brain, two Transcranial Dopplers, X-rays, an Echocardiogram, and a CT.   Thankfully nothing showed a stroke.

The thing that is toubling to me, is that this doesn’t even explain my pain, or all of the weird things going on in my body.   This is just one more for the list.   I feel like I am back at the beginning, but with added symptoms, and more medications.   I’ve been trying to go OFF medications, I feel like doctors just keep adding meds that don’t help.  The ones added by the hospital are very necessary, but I feel like I am taking a step backwards   😒.  The only thing this dissected artery explains is my neck pain and my headaches.  I am hoping this new medication I am taking will help with this over time, but it could take months…..

Basically the course of treatment for a dissected Vertebral Artery is to take anti-coagulation medication and check on the progress.  I am still really lost on all of this but here is how it was explained to me… There is a tear in the lining of the artery, and when the tear happens, it forms a clot.  The blood gets trapped in the tear and has no where else to go.  The medication I am taking will thin the blood and dissolve the clot.  Hopefully as this happens the pain will get better.     ?

I was on the Neurology/Stoke floor so alot of the Doctors there don’t really understand all of my other Vascular issues, or that I am in a ton more pain than I should be.   THAT is what is concerning to me.   Its been really hard to get my pain under control, and if the pain isn’t really explained by this issue, where is it coming from?!?!?!?   And why are none of my doctors concerned by this?  I am very concerned by this.   This was why I wanted to go to Northwestern, so they could look at my body as a WHOLE and maybe get some things figured out.   I feel like all I have is 1000 more questions.

They switched my medication I take for my heart rate/migraines and my heart went out of control.   My heart rate was going up to 150 from taking a sip of water and barely moving.  It was up at 170 when I got up to go to the bathroom and walk 4 steps.  My heart rate NEVER goes this high unless I am doing serious Cardio, and that is not very often.  I was on Propranlol for the last probably 7 years, and they switched me to  Varapamill because they thought it would help more.  They didn’t taper it or anything so it was probably just withdrawing from something I have taken every day for 7 years.  They were still trying to discharge me while this was going on….??!!  I realize I am probably a little more paranoid about my own body then the doctors are, but when I am getting dizzy getting up from my bed, and my heart feels like it is beating out of my chest, I didn’t really feel like it was time to go HOME?!?!?!

They ended up letting me decide if I wanted to stay another night, and I decided yes.  After all this though, my “team” of doctors never even came back.  They sent in what seemed like the least experienced and least helpful one to “deal” with me Friday when I was trying to get discharged.  My nurse told me at 7 am that I would be discharged in an hour, and to have my ride come.   Well I didn’t get discharged until around 1:30pm and it was not a fun morning.  This doctor that they sent in lied to me multiple times, and I will NOT have her treating me going forward.  She actually ended up apologizing to me in the end and thanked me for teaching her something about how medications and Pharmacy’s worked.   Yep, I taught a doctor all about how Pain Medicines work at the Pharmacy, and she literally had no idea.   She wrote the prescription wrong, and I have had the same issue multiple times, so I tried to explain to her what it needs to say in order for me to take my medication correctly, and be able to get a refill when I see my pain doctor this week.  Not only is it hard enough to get a Doctor to prescribe something that helps, but then you have to make sure it is written correctly because the Pharmacy is worse than the Doctors and they REALLY don’t care if you don’t have the meds you need.  She actually told me to take them NOT as she wrote the prescription, and just take more, which is wrong on so many levels.   She was just lazy and didn’t want to re-do it.   She fixed that one, and it was ready when I got home.   The actual important medication that she prescribed was not of course.   My new blood thinner was not there, and me and John spent all afternoon into evening calling the hospital and pharmacy.  I got hung up on a few times before I gave up, and John finally got through to my Nurse (who was awesome I have to say) and after she sent the request to the Doctor 3 more times, it was finally at the Pharmacy at like 7pm.   It shouldn’t be this hard.   I just want to feel better, and our crappy health system is making it damn near impossible.    #Onward #AndTired

How the Opioid Crisis is Impacting Pain Patients – my thoughts

Originally Published:  03/30/18 at 12:46 pm

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I was starting to think the Doctors didn’t believe my pain, but I have been reading alot of people’s posts on a Chronic Pain message board and it seems every person with significant pain is having a similar experience to me.   This breaks my heart, because I know what it is like to feel doctors think your pain is imagined, or in your head, and especially if you do not look sick!   Heaven forbid I put on a little lipstick to leave the house.  I must be fine.  I also had on lipstick in the ICU after the accident, my mom taught me that lipstick makes everything better 😊

makes everything better (2010 in ICU) 💓

I realize doctors have to make sure to “cover their butt” also, and cannot go around handing out medication to everyone, but when you bring in the $70,000 of tests you have had done so far this year, I feel like most people wouldn’t spend their time doing this for fun!!   There needs to be some kind of happy medium, because before when I did not need them, every doctor was trying to force me on Opiates, and now that I can barely function without them, it is like pulling teeth to find a competent doctor to prescribe them that I have not already told to take a hike.

Yesterday, 03/28/18 I went in for an Epidural Steroid Injection with the new Pain Management doctor I have been seeing, and boy was it fun!!  (that is sarcastic if you could not tell, if you don’t know me well I am very sarcastic 🙂 ).

This has not been a good week, I have been in a tremendous amount of pain and though I have been avoiding taking strong pain medicine, I am absolutely useless without it currently.   The last few weeks I have been taking Tramadol, which is every doctor’s go to currently, unless you put up a fight.  It is a much less dangerous alternative to things like Norco and Vicodin for anyone unfamiliar with them, but also with about a quarter of the pain relief.  The pain doc told me to take a Tramadol with two extra strength Tylenol, and it has been helping bring my pain down from a 9 to an 8 out of 10, not much help.

When I went for my injection yesterday I had a chance to talk to him for a few minutes before the procedure and I told him how miserable I was and how it’s getting hard to do anything with my left arm.  His first suggestion was more Tramadol, which I get some bad side effects from anyways, but taking more just makes me nauseous.   The next suggestion was Tylenol 3 (Tylenol with Codeine). Really dude?  This barely helps my aches, let alone my severe pain, this is not my first rodeo.   By now I am getting frustrated, I can tell he is not going to actually help, and my voice is starting to break. Doctors have the ability to make me more upset than anyone or anything on the planet and I HATE THAT.

I tell him I know with what is going on with the Opioid Crisis doctors are reluctant to prescribe narcotics, and I am not trying to be pushy but I cannot function, and that I do not understand if I am telling him what I know what helps (Norco 10mg, my vascular doctor was prescribing these when this first got bad a few weeks ago).   He wrote the prescription for Tylenol 3 for 90 pills and left the room.   I’m glad he left, because that’s when the waterworks started.

It’s pretty sad that my Husband had to step in and went and spoke with the Nurse.   She said mostly the Doctor doesn’t listen and just does what he wants, where did we find him?!?!   I noticed her in the corner rolling her eyes at everything the doctor was saying to me, and I knew I would like her immediately!  She basically explained he kind of sucks, I have never heard a nurse speak about a doctor like this, but this is what working for a pain management specialist during an Opioid Crisis does to someone!

The doctor never came back to speak with me, but when they took me into the operating room and had me partially sedated he said he would give me the prescription, and wrote it for half of what I said worked for me previously. The nurse had gone and spoken with him on my behalf…. That’s right, because he didn’t want to deal with me anymore, he sedated me then told me.  WHAT!?   I feel better today, even with his recommended half dose, so I will take it as a win, but not without a fight of course!

Doctors are scared right now, which I understand.  This has gotten completely out of control, and people I know have died because of these drugs.   This is why I do not want to take them, but sometimes they are necessary.   The pain doctor I had up until Nov. 2017 had no problem writing a prescription for pain medicine, but that was his only option which is why I stopped seeing him.  He wanted me to rely on these forever, along with muscle relaxers, preventatives, sleeping medicine and anything else that I’m sure keeps his income flowing.   I want to feel better and never see a pain management doctor ever again.   This is a problem, when the patient and the doctor do not agree on what they are working towards, it will never work.

So I am going to keep working toward my goal of feeling better, with my end goal the same, and hope that these doctors can support and help me along the way.  My second Epidural is next week, so hopefully that one will be a better experience!  I am not sure if this new pain management doctor will work out, but I feel like I am making progress and getting better at speaking up and not just doing what the doctor thinks (most of them are just guessing anyways!)

Hopefully I will have a good update next week, the EMG has been moved again to Thursday.   I showed up yesterday to the office in Lake Barrington to be told the Doctor got sick on his way in to work.    The fun continues…… 😂😂😂😂😂😂😂😂😂😂😂😂😂😂😂