Friday, October 21, 2016

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!

Saturday, May 7, 2016

Saturday Musings

Reclining Figure | Fernand L├ęger
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! 

Wednesday, February 24, 2016

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....

Tuesday, February 23, 2016

Wednesday, February 17, 2016

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

Thursday, February 4, 2016

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

Tuesday, January 12, 2016

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

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