#ACA and #Inauguration Day!

Three Flags | Jasper Johns

On this auspicious day, Inauguration Day 2017, I joined the over twenty million folks out there who are covered by what is proverbially called #ObamaCare. I did so with great trepidation, but after much homework and a dose of fear, because who knows what our new government is going to do, I took the dive and joined 20 million other people who have medical coverage under the #ACA. They do say safety in numbers...

I could have waited until Cobra ran out at the end of May, but with the current cost increase of 33% to a nice tune of $2K and given our minimal income flow, after extensive financial calculations my husband and I took the leap. We will end up with a relatively decent medical plan alone for less than 1/2 the price of Cobra with zero deductible – yes 0. The downside it has a very high maximum out-of-pocket, something I frequently use when I have surgeries. So, with hope, we have a large part of those in the background, if not...then...the next plan up (the top tiered CA plan in our area) was still 33% cheaper than our Cobra and comparable to our current plan, even better in some ways.  The real hope is that I don’t have surgeries, nor do we have any traumatic medical events this year. I am trying to take this as a year of healing!

I also took the leap to join a movement of people because I figure I need to have skin in the game to take a stand and help support something I believe in – healthcare and insurance. And what better way than being one of those impacted.

I never thought I would be in the position of not having group healthcare. Since the onset of my medical, in 1994, I have had group healthcare coverage, through myself or in the last years, through my husband. It is the last great bastion of medical coverage, which is itself is getting tarnished. Over the last years, even group healthcare coverage has been hit hard with year over year cost increases (approx 25%) and lesser coverage. I have heard other horror stories. We have been fortunate. 

So, now on this day I will stand with the 20 million people out there dependent on #ObamaCare. Although imperfect (that’s another post altogether), it provides access to people who need healthcare at a wide range of costs, at least in California. And, I plan on being there with my friends, compatriots, and fellow patient advocates to stand up to the government and be apart of the problem and solution by having my #skininthegame because we are going to need all the help we can get! 

Post Surgery Day 2: Free the Kracken ok...just the Catheter

Still Life with Catheter

Ok, so it might not be free the Kracken, but it is very nice to take my catheter out and have my bladder function.

What was even nicer is that the doctor listened to me and followed my request to allow me to take a foley bag home. Those of you in the medical biz knows what that means. This was a well done case of patient said to new doctor..."this is what happens to me post surgery.... my bladder takes 24 to 48 hours to function and I do not want to be in a position of having to  go the emergency room to be catheterized, so could we simply go home with one?  I know the protocol of removing it." And, with little question he said, "you know your own body." (I would hope so after 20 some odd surgeries) and away we went, reducing one post surgical problem that vexes me! The request definitely had to be vetted by the surgery center nursing staff, but ultimately I got what I wanted and reduced my stress level.

So that is the good news of day 2! A great example of a patient and Dr partnership!
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Saturday Musings

Reclining Figure | Fernand Léger

It has been a long while since I have committed my thoughts to the internet. I have been jumping around like a mexican jumping bean from one fire to another. Trying to keep up with a sense of a life beyond the physical travails while managing the physical travails, while life plows on with disregard ... the thing about having a chronic condition is that life doesn't stop. Family's illnesses, or deaths keep going, other people's troubles happen. Those are the times when you realize that your health stuff sometimes has to take a back seat and that is such a challenge...more it has consequences. Not taking heed of your limitations does have ripple effects. And, therein lies the rub. It all ultimately comes down to balance...but for me the elusiveness of that is a challenge and a burden. I hope to find a way to bring the pieces together into a more cohesive whole! 

Meandering Thoughts on Polar Thinking and the Impact on Your Psyche: Sick or Not

Georgia O'Keeffe | Sky Above Clouds IV, 1965

I have been noticing how much I look at things in black and white. Good vs Bad, Nice vs Mean, Pretty vs Ugly, Rich vs Poor, Good Day vs Bad Day, Good Mood vs Bad Mood. and of course Healthy vs Sick.

When, I step back there is really is no such thing as duality. Rather, things are on a continuum. I have been thinking about how limiting dual thinking is. As opposed to being on a continuum like a Theramin, which allows a range of thoughts, beliefs, and feelings.  Even on a bad day I can have a damm fine moment, and visa versa. I have to remember that.

And, at this point, even sick it doesn't have to be the only think that defines you, grabs hold of you. These are my ramblings of the moment....and the picture that matches....

Some Days it's like this:

Max Ernst | Untitled

When Things Don't Go as Planned

William Blake | Ancient Days 1794

We always hope that we make good decisions, yet, I am deeply reminded that the best made decisions can not go the way you expect, would like, had hoped, wanted, wished for, desired, the way the experts planned.

Frankly, I don't know if I am cursed or not. There are moments, days, times, when I really think I am. One would think with all the prep work I do things would go swimmingly. 

I go to the top surgeons in the country (shit I travel all over to see doctors),  this is after going to top doctors here locally and up to SF. I follow protocols, I exercise. Heck...I am nearly a model patient. I follow their advice. I take a long time to make decisions. I look at research. I cross check my cabin, so to speak...Yet, despite all the best attempts by top surgeons, acupuncturists, immunologists, endocrinologists, no one has a clue what is going on. Dr Paprosky in Chicago, whom I am going to see in three weeks, leading hip revision specialist, says..."Alex, you have weird bone..." I say, #REALLY? 

The bummer is that I am 7 months post op. The reason I had surgery has not been resolved by surgery, and I have added new problems to my plate, and those problems are nasty. Not only does my femur hurt but any rotation around the hip hurts as well, and this is very new. So, that is where we are at. I have strengthened, and am getting stronger, but my pain is very precise and nasty when I move my joint around, so that #SUCKS. Don't know if any of this is resolvable, but after 7 months of an agonizing process it is sometimes depressing to realize that I have not made progress and that can be #DEPRESSING and #FRUSTRATING and if I allow myself to stay there for any length of time things can go #south qickly. 

My therapist has taught me that feelings are a choice, and it has taken a long to time to believe that...ironically, feelings come from beliefs, so the job is to examine the belief and change that to change the feeling. Work that through a bit, sounds very counter intuitive but is true. Besides the long term work of psychotherapy I have found these tools useful to work through some of those difficult moments:

• Block the feeling and do something
• Volunteer: One of the best medicines for getting out of your head
• Do a quick Meditation. There is this sweet app called Stop Think & Breathe, a meditation for any given moment. Credit for this find is to my friend Zara
• Write down things I am grateful for.  Here's a fun tool for that: 3goodthings

My #PatientVacation is up

Yup, it's that time of year. Since I have been struggling with my ongoing orthopedic problems at the beginning of the year I play a game to see how long can I go without addressing them, meaning not see a doctor about it to examine other interventions other than maintenance activities, like physical therapy, or acupuncture, or medication. The length of time of this game usually doesn't last long.

Last year, although I had lots of medical appointments to address maintenance issues like mental health, dental, or allergy shots, which all started on January 2nd, I was able to avoid my ortho issues until April of 2015, and then a rainstorm of hell rained down on me, including multiple other  non ortho issues: eye problems (scratched corneas, benign eye tumor), allergic reactions to dental work, and shoulder problems. My year got sucked into the #chroniclife vortex of medical triage, which I have mostly documented following the massive hip revision that was supposed to be the gold prize of the year...#NOT. It has not been fun. It was one of the hardest years I have ever had, but I survived and hear to tell you the tale. :)

This year, I went into the early part of the year, knowing that the hip revision outcome has been, let's say, not as smooth as I would have liked. If someone were to ask me was this worth it,  I would not be able to say,  in good conscious, at this point it was...I do still have hope, and I have worked very hard this time around, following my PT instructions to the T and then some, but alas, the horrible cables holding my hip together are not feeling so good, and I have really bad hip joint pain that screams with any rotation of the hip joint. Something is pinching and poking in there. It's a misery, so, today is the day I start back to my quest to find some pain free living and function. I have emailed my doctor's in Chicago and my therapists in Colorado to start this process. #SHIT

I tell you....does that look comfortable to you? #Sigh If you a chronic patient living a #Chroniclife share your beginning of the year games, if you have any.  Thanks for reading

Relevancy in the Face of Chronic Illness

I have to admit...the years of struggling with Chronic Illness has left me struggling with my identity. What do I have to offer the world, other than dealing with my medical stuff? That is a question I am currently struggling with. I am aging, I haven't worked in eight years, have no children, so what is my purpose? That's an interesting question

Triage in the face of Pain and Uncertainty

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In preparation to determine the "next steps" for my recovery, like starting to bear weight through my leg to see if it is doing ok and help it build bone, I sent my notes to my doctor in Chicago, including mark ups of my X-rays to check in on my concerns following this latest surgery.

Even after  doing this so many times, there are times I get overwhelmed by the complexity, primitiveness of my remedies, and multiple body parts that keep getting involved and increasingly compete. Sometimes, I spontaneously burst into tears.  I get confused and frustrated as to which joint I am primarily concerned with at that moment. It is all a rotating circle of hell at times. In the last 12 months I have had 3 significant ortho surgeries on three different body parts, and have an impending eye surgery (4th body part) in a couple months. New, non-ortho related diagnoses this year have been wrecking havoc on my medical project manager ability.

I have to remember that the hip surgery is my most important, has the biggest risk and implication for my long term functionality, and most problematic.  If there are problems everything else will be tossed and we will focus on hip.  I certainly hope not. I look at that Xray and cringe and wonder ... how is this going to work? Forget the picture, it is also, how it feels, the pain, and strange crunching sounds that concern me.

 Working with a new remote team has added to the stress level – it adds time, new communication challenges, and stretches the patience. I have forgotten what it is like to start afresh and mostly afar with a team I have no track record with. I have worked with the Steadman Clinic since 2000, (yikes, that is 15 years) and know the staff, their various protocols, and where I can push the envelope. No track record leaves me "stress testing" the system for what works and doesn't work, and what can bend or not.  My coordination with a local Dr fell flat. (He really didn't want to get involved and I wasn't the most aggressive cheer leader).  I have forgotten how long it takes to build a new relationship.

While I am working on moving the hip forward I am starting to wrap my head around my impending eye surgery to remove the pterygium on my cornea with a graft from an unseen location of my cornea. And I am setting up the allergy testing to dental cement to finalize the one year tooth saga. This is due to the extreme reaction I had to dental cement while they were finalizing a crown taking care of my extreme allergy reactions to dental cement, and managing my other joints. All this is being done before we loose our medical insurance at the end of November. Hence the rapid pace at which I am working.

And, these are the times when things get heady and I want to curl up in a fetal position and cry...

 All I can do is keep at it and inch this ball forward and see where we end up. What I do know, in the back of my head is that perseverance is a mind set and you just have to plug through...I cannot let my fears get the best of me...and I have assume that things are going to work out.

On Death With the Eminent Dr Sacks

Isle of the Dead | Arnold Böcklin

Dr Sack's, eminent humanist and beloved neurologist died last Sunday. He made the world of medicine accessible to the lay people and brought insight into the struggle of being human. I came across this article about his perspective on death in Flavorwire digital newsletter, that I thought I would share.

Here are some of my favorite quotes, the first being top, from the article that lead me to his recent essays on death

• Americans’ relationship to death has often struck me as being an extension of our puritan attitudes about sex  ... yet many Americans could care less about the deaths of oppressed people at the hands of the state, or from neglect.

• “Our reluctance to honestly examine the experience of aging and dying has increased the harm we inflict on people and denied them the basic comforts they most need,” 

• Rather than the kind of palliative care that would allow the dying to sum up their lives and say goodbye, Gawande chronicles how we often opt for invasive treatment that could prolong life, but so often doesn’t.

I do feel our society has a tricky relationship with death and aging. We can barely talk/tackle other social issues like race or poverty so, sadly, it is no surprise. I think talking about death is important to discuss openly, especially with loved ones. It is a natural part of our life process and it seems so often people are not prepared for.

 Here are Dr Sack's thoughts when he was initially diagnosed, followed by The Periodic Table and The Sabbath.

In typical enthusiasm Dr Sack's last tweet

Headspace

The Black Poet | Jean-Léon Gérôme | Legion of Honor

Somedays you have to get into the zone to push through and sometimes that is not being on task sometimes it is simply sitting: 

If I think too hard

The Rock | Peter Blume | 1944 - 48 | Art Institute Chicago

I could get really depressed about my situation so I will work on not thinking about it since it is out of my hands! 

Week 6: Glass Half Full

I used to hate going through orthopedic surgery recoveries. And, I do this a lot...where several months are dedicated to simply getting back on my feet, and then more to get strong on my feet. This latest surgery was a complicated revision of my failed total hip arthroplasty that was done in 2009 and it is going take around 9+ months to  recover. I am currently on week 6 and hoping I can soon increase my weight bearing. We will find out next week after X-rays are reviewed. I am currently only toe touch weight bearing on my left leg. It is difficult to maneuver especially with the bulky brace

What I have learned is how to leverage the downtime and have a small catalog of the positives on being stuck in bed:e

#Advantages of being totally laid up.

1. Get to sew those things that I been meaning to do (for the last year) but was too busy to do it.
2. Get to do all that fun sedentary paperwork that I have been avoiding. 
3. A lot of paper files are being jettisoned! 
4. Less of a mess to clean up because I am not running around making a mess
5. Get to go through all my medical paperwork that I have been avoiding
6. When I don't feel well I care less about those niggly details that usually drive me batty
7. Get to be introspective and think about the larger picture of life
8. Get to clean up, clear out, and organize my apps on my IOS devices
9. Time to pamper my cuticles
10. Get time to read my magazines and books
11. Get to get in touch with people I haven't had time to be in touch with

Week 5 Post Op: Hope, Trepidation, and Gratitude

The Banquet | René Magrite 

Greeting week five with hope and trepidation. I started perking up a bit in small ways. Using a wheelchair to help move around the house; eat at the dining table, pay a few bills...yes, this is my definition of hope and excitement.

This was followed by an extreme exacerbation of a pinpoint high pain in my pelvis, making me concerned about the implications of my "tumble" last week, that I have been trying to put to the back of my mind with little success. 

I am extremely embarrassed by, mad at, frustrated with the stumble that landed me on my right pelvis (opposite my operative hip). It was a tiny movement, while I was straightening a corner of the bedding, between the wall and the bed, that landing me in a precarious position.  The one good thing I was able to do was save the most important part of my surgery, which was the femur.  However, the realization of how a single movement can result in one's undoing has been extremely unnerving –– a small shift in weight can result in losing balance in a tiny space in a walker.  If I were in a different time I would be a goner – this is how animals died on the plains and this is often the trigger of the end game in old people, and that brought a lot of things about my situation in life to a crisp focus.

Life is a fine balance, and anything can act as a tipping point.  As they say things can change on a dime. We easily forget this as we ambulate through life until something goes wrong, and it can go wrong at any time. As I get older, have more experience with difficulties, especially medical ones, I realize how temporary it all is. And, that you have to savor each and every moment. And, appreciate very small moments.

Be grateful for your loved ones and all their imperfections, be joyful of a moment of connection with anything that moves you be it a plant, animal, human, or other. Be grateful for even the tiniest of things in a given day, because I guarantee you that there is always something to be grateful for. The smallest of gratitudes build onto each other, and even on the shitiest of days you can find many things to be grateful for;  like, being grateful for having energy to pay bills...sometimes I don't even have that. So, I will take it and run with it....ok, maybe I am not running with it.... I am wheeling with it! 

Week 4 Post-Op

Andrew Wyeth | Christmas Morning 

When recovering from ________ (whatever it is that you are recovering from) sometimes all you can do is lie there very quietly and look towards the horizon.

One Month: Still about the small things

So, today, my giant achievement was walking with the walker into my doctor's office and walking out of the doctor's office, with my husband by my side to make sure I didn't topple over. That was a very exhausting 50ft. I took breaks. But, I did it, and that is what I am grateful for today. Other than that I am pretty dang pooped... #ThereYouHaveIt

Day 28: It's the Small Things

When you get down to it, in life, it really is about the small things which add up to big things....but, it all starts very small.

I am especially reminded of this when I go through a long painful recovery, which I am right now....  there are no grand plans other than not having an accident when I am trying to rush to the elevated toilet seat in our bathroom, with my walker, and hip brace in place.

Or, having a shower, with the hip brace in place.

Or, paying a bill, that has been sitting unpaid since way before surgery.

It is these moments when you realize how small life really is, and it is so important to be grateful for what you have, because sometimes that is all you have.

This article,  12 Little Known Laws of Gratitude ,  I found humbly covers the reasons why I think #gratefulness is important in daily life and especially relevant when life is made even smaller than the "social norms".

Day 27

Wiped out is the theme of the day. Woke up wiped up....lying here wiped out...and just letting the muscles stretch a bit....sometimes that's all one can do.

Day 5: #Postop

There are some days that I really think I cannot go on any longer. Today is one of those. 5th day post op and I am in excruciating pain. 

Day One through Five: #PostOp

I have no real memory between day 1 through 5. The few memories I have is that I woke up in horrid pain to learn that the surgery was the more complicated scenario.