Monday, May 13, 2013

A Return to the Journey of 2011...The Plot Thickens....



  Part 1

I remember after that second surgery, Dr Petty asked if I had questions. I don't know how you do at such times but it takes me a while to process so I can even think of questions so later, much later, I had them but nothing at the time.  It would be weeks for little pieces of information to surface and many months for others. To this day I have questions as  things comes to light.

I am not saying Dr Petty did a poor job although at one point, I considered it because I got only a small piece of what happened in that surgery. Yet that opinion changed as more information has surfaced.  What I am saying is that details that I wasn't told or didn't understand about that surgery have played a part in where I am today and yet no one thought the information was important enough to share with me.

Had I had the details about what made that surgery take so long and what he meant about cleaning up maybe I would have understood what was happening to my body. Then I might have been better prepared to advocate in my behalf.

If there is one thing I have learned about today's medicine it is that patients need to be their own advocates or have a competent advocate at all times. There are so many ways to get lost in a system that has become more about profit and less about patient care.
 Being a good advocate is definitely affected by a patient's knowledge and understanding of her/his condition.

In the days that followed this surgery to repair my failed ostomy, my condition did not improve. The new ostomy itself was healthy looking but the incision that had been made to perform that repair quickly deteriorated into two gaping holes in my abdomen.

The days were ticking off the calendar and with them went my resilience. The doctors were talking about putting me in a nursing home which severely threatened my will to live. I needed my home, my horses, my family and my friends. What I had was sterile walls in cramped single rooms that kept changing as I was shuttled from one hospital ward to another.  Between all the moves and nurses stretched beyond their limits I stayed nowhere long enough to learn their names or for any of them to form any kind of connection with me. Any friends who had been visiting all believed I had long since gone home. I felt like I was in solitary confinement with no one to talk with for days and days. Life was punishingly cruel from nearly every asect.

Dave and Lindsay came by every evening for a brief visit after all their chores were done. Both were exhausted carrying the extra load my absence created. Unbeknownst to us Lindsay was in the process of losing her hearing so conversation with her was difficult and exhausting. My husband was so overwhelmed he was beyond words. While I was glad to have them those brief visits were no relief to the growing isolation that was holding me captive and gradually choking out all hope my life would ever resume.

To be continued.....

An Extreme Aftermath

Note: I might add that same sense of isolation, I still struggle with these days. Ever since my first release from the hospital, I have spent as much time alone as I did in the hospital. As you will see as this story unfolds there are reasons that has developed.  It has been further complicated by the fact I had built for myself an online support system that I have been unable to maintain due to medical conditions that keep me from being able to sit at the computer. My contact with the outside world is very much limited to my contact with others through this blog. The bad thing is such isolation threatens my recovery as much today as it did when I was still hospitalized.

16 comments:

  1. As you say, it's so true, and so unfortunate, that patients cannot rely on doctors to give them all of the information that they need in order to make the best decision for their own care. I feel for you.

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  2. Being in a hospital messes with one's mind and senses. Something as simple as a ticking clock or a neighbor's TV volume can drive you crazy, especially when you can't get up and do anything about it. The nurses are everything. They can make or break your sanity. Going into the hospital for surgeries, I always thought I wouldn't want visitors seeing me in my unshowered, out-of-it condition, but I quickly learned that having visitors was the highlight of my days. Touch is important too. You can have visitors hovering around, but if one of them takes the time to just hold your hand or even your foot, touch can be very healing. I'm happy to see you are posting often. I really think writing and getting comments will help. You've been out of commission a long time and I'm sure you are desperate for a change. Energy feeds off energy.

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    1. You're so right about touch and the foot. I used to hold Lindsay's foot during MRI's. It always soothed her.

      I am definitely desperate for something to change. Seems to me that two years of this should be more than enough for anyone to have to bare.

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    2. Forgot to mention, it sounds to me like you are way to familiar with this experience. I am sorry to hear that. Hope you are doing better now.

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  3. I think the more independent you've been in life, the more you tend to end up being isolated in older age. I love my horses and dogs and my garden and wouldn't want to give them up, but taking care of it all seems to take all my energy these days, I'm not really antisocial, I'm just tired.

    I'm glad you've found some support here, and I hope you can continue to blog. It's too bad we can't be close enough to really help each other when we need it.

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    1. I think you may be right about independence ending in isolation. It sucks.

      Distance is definitely a difficult aspect about building a support system on the internet. People who would like to help are too far away to do so and to be candid, it has been difficult to find that I have given twenty years as a volunteer to my Arabian club but not one offer of help when I have really needed it. Doesn't say much for them but then I had already learned all my time was not appreciated by them when I was not even thanked when I retired so while this disappointed me, it did not surprise me. Sad....

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  4. I'm so sorry you're going through this, Mikael. You're in my thoughts and prayers! I am so happy, though, that you're back to blogging; I've missed reading your posts!

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    1. Thanks for that. I hope I don't burn you out with these posts because this is just the beginning of this nightmare.

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  5. Patients do eyed advocates and need to be aware of their situations nowadays. You're right about that.

    I feel for you that you couldn't get to a computer for such a long tie and missed your online support. Knowing we're all here for you isn't the same as directly communicating.

    Just wondering if there was any way you could get the use of an iPad or similar device? That's what I use most of the time and you can use it anywhere.

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    1. An I pad is a great idea but way out of my budget. Until I have fewer horses to feed, it will have to wait but who knows, it could happen tomorrow.

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  6. I know what you mean about not getting all of the information. I feel the opposite at times though. Knowing the horses, working for the vet and having a decent grasp on common sense, anatomy and a few other things, a lot of times I feel like they are talking down to me as if I had no clue about anything. That gets just as annoying. At least to me it does. Skip the fluffy crap and cut to the chase. Give it to me straight. If I don't understand a word or something we can back up and go over that.

    Hope you are all sorted out soon, but glad to see you posting regularly again.

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    1. I get what you are talking about too but this was definitely a matter of leaving out things I should have been told.

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  7. I so wish I could be there to help, our talks on the phone have been rare but a treat to hear from you , sorry I keep missing the calls

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    1. I will keep trying. Sometimes when I remember it is too early and other times too late but one of these days. Are you still coming this way later in the month?

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  8. looks like not till fall maybe I will sure let you know

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