Healthcare - insurance costs

I am do for a divorce soon.  We were working on filing the papers when I hit a rough medical patch (stroke! tumor! an overabundance of intoxicatingly fun life happenings! I am being so sarcastic here...)  He did not finalize the divorce and leave me in the lurch, instead, he kept me on his insurance and waited.  As did I. 
We are gearing up the paperwork again, and I am taking care of medical stuff I was procrastinating on. 
My story is this.  I received the bill for the gall bladder surgery.  $38,561.00.  
                            My portion to pay.    $518.00
                             The amount they write off due to me having insurance?  $30,765.00. 

Let me get this right. 
If I did not have insurance, I would be on the hook for the whole amount.  Chances are I would not have insurance because I could not afford $600/mo (which is the cost of my specific insurance).  So I cannot afford insurance, but I receive bills that would eventually bankrupt me?  With my health issues, I won't ever go without insurance, but it seems ridiculous there is such a price difference.  It should be the same damn price for everyone. 
Oh, and, I have started asking how much visits and tests are... and frequently receive the answer ; Oh, don't worry, your insurance will pay it. 
I know they will pay, but since you charge a different price for me, and give me and my family more advanced and expensive tests because we have good insurance I would like to know what that is. 
And for the record, I am fully supportive of the affordable care act. 

Gall bladder firmly out

I had the surgery. My over sized non-working gall bladder was hauled out of my body.  The surgery was laparoscopic-- four incisions made, to accommodate a camera, navigating tools and extraction spot.  I recovered nicely, although at one point got a lecture because I thought I could be doing stuff one week after surgery.  And was told, no, I needed to not be hauling stuff around for about a month.
Sigh.
I learned to be patient.
There is also the most astounding photo taken by the doc.  I love it! But it is a bit graphic.  My surgeon, who has a sense of humor and knows I do, when all was said and done and my surgery was over, took a pic where he arranged my gall bladder and gall stones into a smiley face.
Family members say I should put a hat on it and make it my xmas card.  I am surrounded by comedians..

Unrelated picture... what else am I doing?  Processing the 1600 pounds of apples this tree gave us.  Full disclosure : I am giving many of them away. 

Surgery- Gall bladder

I need my gall bladder removed.  Since the stroke I have dozens of little stones that have formed in it, and cannot be on any statins because they give me an attack.  (Doctor point of contention "There are no studies that show statins cause gall stones").  Well, doctors. When you put me on statins they give me an attack. When I don't take statins, the attacks stop unless I do something like, say, for instance, eat a brownie. A big one. Or down something cooked with lots of dairy.
Since I am "getting" the importance of being on a statin as a preventative, it is better for me to do this surgery when I am still relatively young with minimal health issues at this point.  (Do I really get to say that with a stroke and deadish head tumor floating around in my head -- I am saying it anyway). The stones may have been caused by my sudden diet change or weight loss (35 pounds over a year, no more any fried foods or burgers...75% less meat consumption) and in some ways it does not matter. A gall bladder attack is something I am getting very tired of.  Hours on the bathroom floor worshipping the white ceramic toilet.  Absolutely hands-down an unthrilling stomach venture.  And they always happen at night, so it pretty much wipes out the next day.
Unrelated milestone I passed... the two year mark since the stroke.  It is true, the first year was the sketchiest.  I went to the hospital for more weird episodic head stuff than I have in the last 9 months.  It seems like things have stabilized. For my age and demographic, three years is the mark of going back down to only having a 3%  risk of recurrent stroke (10 times greater than the non-stroked general population), rather than 30%.  I should search Deans blog for more current research than 20+ year old stuff out of England but I liked what this one said.  I am a person that likes to know things, but truly the data on strokes is heavy, depressing, and hopeless sounding.  I went to a very dark place post-stroke because of how it was presented (and having many in the health care industry visibly give up on preventative health care for me) like I had one foot in the grave. Technically, we all are going to the same place, so that is a ridiculous attitude to have.  I am glad (?) maybe not the right word, to know what my body has a propensity for so I can manage my life better.  And, I get to say that, because, really, what choice do I have?  -

My Mom's Day present from the kids this year. 

New Internist

My neurologist has been working on me a while to get an internist.  I have so far tried out two - neither which clicked with me. 
Trust. The first, when I told her my blood pressure ran high during menses she cocked her head sideways and said "Well, that can't be, why don't you come in and have the nurse take your blood pressure at that time and we will see".  Like a) her nurse will get a more accurate read than my home cuff or the drug store and b)it is all in my head and she needed an official nurse reading. Also, her office was a ferry ride and 30 minute drive away.
Trust. The second charged me $310 a visit because I needed the "highest level care". She was never with me more than 10 minutes, frequently did not remember things she was going to do, and never crossed from her side of the room over to mine.  Not sure that is $310 a visit care.
Yesterday I went to a new doc.  Energetic, alert, super up-to-date knowledge, he spent the time, asked a lot of questions, and may be a good fit.  Every record he makes will be online accessible for me to see and be a reminder of all the things he and I want to do.  So if I forget that he said to monitor my blood pressure at 9am and 9pm I can check that.
The only thing I had a problem with is that he questioned whether some of my stroke symptoms were really psychological -- if the symptoms I experienced post-stroke were my mental gymnastics in trying to cope with a stroke.  He was asking if the brain shut-down, slurred speech, uneven tilting walk, brain sparks, dizziness, unawareness of my left side, tripping, dropping, memory holes were from the stress of dealing with a stroke?  The mind-numbing fog that descended was mental?  I know he will change this thought process once he sees where my stroke damage is. The distinct MRI image pretty much shuts doctors up, and they realize this is not all peri-menopausal female issues. (Yes, I have frustration issues with the wide swath being female has cast over my health care).
The first thing he asked after we went through medical cursory questions was : So tell me about your stroke.  I did a big pause, and then laughed. I am not sure he understood. That is a loaded question. This thing that I have been working into the concept of my life, and my concept of death is so much more than a two minute disembodied trail of symptoms, and each time I tell the tale there is a different angle.  I don't think I can tell you about my stroke is one fell swoop. Do you mean the series of physical events leading up to it? Do you mean what happened physically and mentally afterwards?  Do you mean how they treated it? What tests I had? What they ruled out?  What they don't know? What I do?  How my life is now rolling down an entirely different track... some of it chosen, a lot of it chosen for me?  I know, I know he meant the western medicine list of physical details.  But that isn't anywhere near the whole story, is it? 

Locking mechanism on my bathroom door that I pulled apart to fix.  This is an easy fix. Other things, not so much.

Some fears still hanging around-but getting on with the daily chore of living

On Wednesday I will accept a position on the board of a museum.  One year ago this would have been a pie-in-the-sky concept, since I was immersed in "what-if's" and healing.  What if I rev myself up into another stroke.  What if I have another stroke.  What if I cannot grasp detailed concepts. What if I forget stuff.  What if I fall asleep. I don't have as many of those anymore, or if I do I see other people my age without strokes in their past and realize, "Holy Crap, their memory is shot and they fall asleep too!" .
My part-time job of last summer helped me back into the pacing of work.  I took the winter off to focus on family and farm (which was good because two teenagers just about aged me 22 years in seven months). 
I am gearing up for going back to work and getting a divorce. All which I was doing pre-stroke - but rapidly ceased at my forced life hiatus.
 I have learned when to take a step back.  An adrenaline junkie, I love revving up under pressure to accomplish things.  I know when my physiology is amping up and I intentionally divert that energy to a different place.  That feeling of being keyed up now is a warning sign to me.  That is where the fear comes in... that if I live my life the way I did, that automatically I will wander down the same path and have another stroke.  There is no logic to the situation when I am thinking like this, just an irrational fear.  Almost like a baseball player and their superstitious repetitive movements to bring them luck - I cannot overcome these fears except with time.
Example: During my three-day stroke, I was in a big box store and the neon lights in the back of the store made me feel unbalanced, nauseous and tippy.  So, if I feel like that in a store,(which I still do sometimes) I try to overcome the fear that starts welling up and wait it out.  I remember: I do not have the same circumstances of health that I did with the stroke. Just because I am feeling light-headed does not mean a stroke is imminent. I do have some perception differences post-stroke and tumor, and this may be one of them.   I have found the passing of time is the only thing that truly heals this fear. no doctor has been able to explain this.
The job was the same thing.  When I would get very tired and have more pronounced head fog and slurred speech, I would worry.  As my stamina increased, that diminished.  So as I worked, my fear quieted. The goal here is to make it quieter, less urgent,  and then send it away.  
It is all a learning process, which is ideal for me.  It is good to learn that life is finite, and appreciate it for what it does bring, not fight against what it does not. This may all common sense to you, but I used to have the illusion I controlled my life a bit more than I do.

Pharmacopia

I was prescribed standard "post-ischemic stroke of unknown origin" drugs.  So: statin-blood pressure-blood thinners to add up to a anti-stroke cocktail that "studies have shown" will deter that other stroke.  Will lessen the chances.  Even though my chances are elevated because I already had one.
Thing is. Those drugs suck.  I took them for one year, 3 months.  Daily.  Religiously.  Because. I. Did. Not. Want. Another. Stroke.  And that is the only way I was told was proven. Yeah. Exercise.  Yeah. Weight loss.  Yeah, diet.  Did those inadvertently because I was so freaked out. 

I did not want my kids to experience another stroke.  They are still dealing with the ramifications of July 2011, it drastically changed how we all see life.  It put fear in their life when honestly, I wish they did not have it.  (But we don't control lives now, do we?)

Those drugs.  Made me dizzy. Gave me dozens of gallstones.  Thing is: when you have a dead zone in your head how do you know you are recovering from a head injury vs. side effects from a prescription?  I did not know. I blamed it all on stroke recovery.  I am off Plavix and the statin.  I have no dizziness. I have no jerky muscle movements.  I have no firework sparks going off in my skull randomly.  I was blaming all that on the stroke and the bullshit thing is it was the drugs.  Which every doctor denied "that is not a usual response to this drug" but the pharmacist confirmed as a possibility.  There is a strange loop we get into.  The insurance. The doctors. The "norm".  Pre-stroke I did not drink.  I barely took aspirin because I really don't like drugs.  When I was put on an overabundance of pharmaceuticals it makes sense my body had difficulty navigating both head repair and drugs. 

My liberty is I can say this all because my cholesterol is low. My blood is thin. Honestly, if I was in a risk zone, I would still be on them.  And yes, I am going against doctors wishes my dropping these drugs, but whether that is for litigious self protection on their part or a true belief that drugs help... I need to listen to another voice.  And that voice is not based on studies that are not my demographic, not my physiology. Sucks, but there it is. 

Physical Therapy - again

Went to a new physical therapist yesterday.  As part of my wrapping up medical things while they are fully paid for before the divorce... I went to this PT for getting my lesser muscles back online.  I notice my muscle mass is decidedly different on the left side of my body. After the ever-fun assessment it was decided, yes, my left leg and torso have lost strength.  He gives me such simple exercises.  Ridiculously easy and slow and they don't take much time.  And, after, I feel like I have run a marathon and swam the English channel AND climbed Mt. Rainier.  My body has been slacking big time.  (Really, I wonder why.)  Once I get over the shock that I have no strength (what is getting me up in the morning? because it is obviously not muscles) I do my exercises and freak out my body.  Connections. All about those connections.  Thank god I am such a stubborn person. 

Doctors and trust

My family doctor was named Leslie. And that is what we called her.  She was also my kids doctor, and gave Ruby her personal email when she became a teenager in case she had any questions about anything at all. Six months after my stroke, Leslie moved on to a training and research position with Fred Hutchinson for the consistent hours and more pay.  But not before she normalized my new life for me just a bit.
She was an amazing practitioner.  She would give me alternatives to prescriptions. She had no time limit on speaking with me about everything, she would take as long as needed.  Once we were done after two hours... an hour after the office closed.   She gave me options to the intense drugs my neurologist was prescribing post-stroke.  This caused him to call her up and read her the riot act, which she then called me and told me both sides of the medical coin regarding the drugs. She was not phased by his call, but wanted me to know I had options.
Even though it was the first time she would not say "everything would be alright", she did tell me there were patients she had with strokes that fully recovered. And got off all the drugs.  She rolled with the punches, no pity, no I am so sorry.  Just : this has happened.  These are some options.  This is what you can't know.  This is what you can.  I miss her knowledge of me.  She knew I did not like drugs.  She knew I was stubborn and liked to figure stuff out.  She knew I needed to know things.  And that I am strong and a fighter.  I guess I am writing this after trying for the last year to find her replacement.  People do not practice medicine that way... or at least I have not found it.  I am slowly molding a set of docs and nurses into what I need but they are under a big hospital corporation that keeps track of every moment of time and makes sure it fits the prescribed pattern of medical behavior for maximum profit.  When I was in Kauai I had some tests done and moved off another drug. (Plavix, I am not looking forward to my neurologists response!)  I was in contact with a nurse at this new office getting the hospital info for her so she could fax off an order...and by the end of our conversations I learned all about her experiences of the other Hawaiian Islands and the Caribbean. Thisconnection makes their tight rules a bit more palatable, in that I am hearing personal stories- and that makes them see me as something other than the patient with a whole lotta shit going on in her head.   I have expanded my world so much post-stroke -opened myself up to new friends, new situations, a new perspective. That actually sounds really cheesy, but it is true.  I am really happy to be here, for however long that is and living a life that I am present in.  No more powering through life with it blurring by like a scenery out the window in a fast car.  Wish me luck with my doctor hunt?

Body awareness

When I was doing various rehabs it was mentioned that "yoga would help".  I do it now, but in the beginning it was a challenge due to balance.  I thought it wildly interesting that I could lose perception of a whole side of my body.  I tilted to one side, I was all bruised from banging into things on the left. But I was not aware of my tilting, and every time I hit something I was shocked.  I lost all ability to be conscious that I even had a left side.  My favorite* strange thing was my left hand letting go of stuff if I didn't watch it.  Just flat out dropping plates and cups filled with drinks.  It was almost as if it was no longer a part of my body, but an acquaintance that I had to keep an eye on so she wouldn't destroy my dishes and harm herself.   I also recall when I began driving that I had to be purposeful in using the mirror on the left side.  It was no longer automatic to check that mirror when merging -- I had to think about it with focus. I know those of you who have this understand, but I find it very hard to put words to losing a part of yourself.  There is no awareness that my left side existed.  No wisp of memory, no "I used to be able to do that".  When I sleep my head wants to tilt to the right.  It feels natural to lean that way.  Super comfortable, and comforting.  Since the stroke I have forced it to tilt left. Pretty much anything that feels void and awkward if I can make my body do it, I do.  And tilting left when I sleep is not a good feeling.  It is not that is hurts, or is uncomfortable, it just feels unsettled.  Like there is no recognition of my body existing in this position.  Not relaxing.  But I have done it over and over again.  Consciously turning my head to the left, moving the left side of my body, my leg, my torso. I can now fall asleep with my head to the left, but the muscles cramp up.  It is all a big process. What do they say?  More a marathon than a sprint.   I get that feeling of wanting to not care. To give up. To take the easy road and exist in my right sided realm.  Most of the time, I fight that.  When we do closed-eye practice in yoga sometimes I open my eyes and find my body has twisted to the right.  All I can say is that it is good I am stubborn and like to win - so when my body torques to the right and feels lovely... I pull it back in line or to the left where it does not reside in peace and make it stay there. 

Son Wilder's art project for school.

18 months later, looking in my car's left sided mirrors is back to being automatic. I pick up my left foot when walking so stumble less. I carry things without dropping them.   But I have way more bruises on the left side of my body that I don't know where they came from, and have joint problems in my left knee and ankle due to my loss of communication between my torso and brain.

This topic idea came from Grace  over at http://www.myhappystroke.com wrote recently about proprioception and her navigating therapies.  It got me thinking about all of this...

Stroke Story Part 3

 Soon after I went into my doctors office (if you are in Seattle and need an excellent neurologist -- send me an email). Unable to walk straight, unable to stay awake and alert for more than a couple hours, entirely overwhelmingly terrified with how my future had just changed... my doc cleared boxes off an exam table (he had just moved into a new office), told me I wasn't on the right meds (given to me a week before by my crappy local hospital), told me they had misdiagnosed my type of stroke (nerds), and then looked me in the eye and said " In one year you won't even know this happened." Meaning that I would have no visible outward remnants of part of my brain being dead. I remember thinking he WAS NUTS... but he wasn't. Today I am close to how I was pre-stroke. Other than I weigh less, have a bit of short term memory spaciness, my muscle mass is different, I say things "differently" at times, and am on cursed cursed prescription drugs. But who's to say I wouldn't be a little ditzy and tongue-tied at this point anyway?
There always will be the life shift that happened on that day. I went from being in control of everything... farm, kids, finances, future -- to being in charge of not hitting the door jamb with the left side of my body when I walked through a door. I learned to accept help from others. My way of looking at life, disability, and independence took a tumble toward the real. You know, that we are not actually in control? I am very good at ignoring the unpleasant. Probably why I can own an old house... I can just merrily trudge through my home repair to-do list as an oblivious optimist. I read sometimes that when people survive something drastic they change their look on life. ( I have Tim McGraw's "Live Like You Were Dying, " going through my head right now). I thought all these life changing thoughts for about nine months and then realized : I wouldn't do anything different. This is the life I would lead if I knew I was going to die in a year. All the mistakes I've made, all the successes, my failed marriage... I wouldn't do it differently. I've got great kids, love where we live, have always had jobs that were ones I picked for interest and luckily supported me. I have not solved any world issues. I don't know how to stop young men from taking guns and harming strangers. I have not found the cure for cancer. But I have lived, gave friends hugs, had long conversations with my ma, laughed until I peed my pants (wait, should I be typin' that?), watched my kids grow with pride and love. I guess I don't record what is important to me anymore as the accomplishments that list my resume, and I used to. That is not what I will take to my grave, and that is certainly not what I thought of when I was in the hospital waiting for my stroke to do its damage.   

 I send out a lot of random prayers for health for other stroke recipients... since I received many from people I have never met.  And this is not like anything you can prepare for, so random prayers alongside whatever your health providers do, whatever your family can give,  however your friends can be there for you... it is all okay. 

Never Silent

My house is in a very quiet location.  There were many things more pressing and needing attention post-stroke, but one of the most insidious that nothing can be done about is the ringing in my head.  I know I am not hearing the sound actually, that something is damaged in my auditory area or processing area so I think I am hearing this incessant whining, buzzing, ringing tinnitus.  I used to love the silence of my home. But now when I am still, with no movement so nothing stroke related is apparent...I have a really loud reminder that something is amiss in brainland.  I am getting hard of hearing because I think everything has to go through and above that noise before it is heard.  (Or, alternatively, I could be hard of hearing because I listened to loud music over headphones in my youthful days....)
But the ringing is pure a stroke side-effect. Blah to you, stroke, for taking away silence.

The reports of my demise have been greatly exaggerated

When people hear stroke, they hear brain damage, and they hear mentally deficit, or physically infirm. And shorter life, and ill health.  I am getting tired of the assumptions made about my "condition. "  The first six months I was telling complete strangers I had a stroke. It was like I needed them to be as astounded as I was. I realize that there is a huge mental block that most people have comprehending that. And I see a lot of fear in them, as I have fear. I feel like a recovering alcoholic "one day at a time" because that is the only way I have found to embrace that fear. Very slowly. Every day I am alive and in my body is a step toward acceptance. I have learned not to tell people about the stroke because they have no where to go with that information. I still have to figure out where to go with that information. Here is a couple tales of what happens when I do tell.

Firstly, I met a former board member for lunch and told her that I had a stroke after her personal tale of a major car accident. When I met a different board member that I had a working rapport with a week later- he gave me a hug just a tad too long - and quizzed me mercilessly about "what changes have occurred in my outlook on life" "what was my love life like" "how were the kids handling my illness" and all sorts of strange uncomfortable queries.  These were board members that I got along well with at work, but they did not know my private life story.  When working, I don't tell people personal stuff because it is work : my livelihood, my professional career. 
He then went on to say they were talking, and understood what changes were happening with me because a mom - in her 80's- had a stroke on the same side of the brain.  And that they understood my ability to think was affected., because her ability to think was affected. I then got a call from him a couple days later to tell me of a volunteer who spoke glowingly of me... And how I needed to realize what a difference I had made to so many people. Does that sound like eulogy material to you?
Second, I have a dear friend that handled my stroke like this:  she mentioned that she would like all of us to go on a trip together "because she doesn't know how long I will be able to do such things. "


I am still here and talking at my kids about their homework (I purposely say at because they don't necessarily listen), taking the horses for a walk, getting the garden queued up, negotiating with doctors, working on my house (always the house... )  Yes, I basically had a big "STOP" put on my life while everything shifted into understanding a new concept of what my life is -- that it is finite and so fragile. I would not be called a fragile person normally, but now get to add that to my repertoire. I am nothing if not adaptable, even if taken there against my will.