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NEW BLOG POST

The start of a new year always brings an opportunity to look back on the past year and possibly beyond. A new year is filled with expectations that things will be better than the year before, particularly when the previous one was difficult. The reality of life is that it has its ups and downs, it’s joys and sorrows, and there is no timetable for any of it.

So what can we do to take a more realistic look at life?

I really believe the most important thing we can do to help fortify us against challenges, is to stop and count our blessings. Even in the worst of times, there is good to be found. Take for example, the many tragedies that have been suffered in this world. Haven’t they always brought out the best in people? From one man stepping up to feed thousands of people in Puerto Rico after the hurricane, to the rescue efforts at the World Trade Center, to the outpouring of funds from individuals for any of the natural disasters that have struck our shores and beyond. Then of course, are those personal challenges where many of us have experienced the pure outpouring of support from others.

I speak from personal experience.

While suffering unspeakable pain, isolation and fear, I was visited by people I would never have expected to see. A work colleague with whom I had differences at times, came to offer me a facial and manicure. Another visitor, someone I knew somewhat peripherally in HS, came to see me while i was in a NYC hospital. A cousin, with whom we had limited contact as children, came several times. Another, traveled in from NJ.

And then those who I counted on, traveled from far away places to see me – my sister, cousin and son. And my dear husband, who was with me every day while in the hospital in CT, came every other day from CT to NY, spending 4 hours a day traveling, while maintaining our home, our pets and a job.

If that’s not something to be grateful for, I don’t know what would be.

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A clautrophobic’s guide to surviving an MRI

If you’ve ever had an MRI, you know the ominous feeling you get as you stare down the narrow tube that looks like a coffin. If you have any degree of claustrophobia, it is positively terrifying. I forgot what it was like and chose an MRI over a CT scan as I didn’t want any more high radiation imaging, having had more of them than you can count. I actually wonder if I am radioactive by now. Also, a one time, a reaction to CT scan dye started a serious allergic reaction, so whenever I have a CT scan, I have to go through a 24-hour premedication protocol that messes with my head and body. So, I decided to get an MRI.

No sooner was I looking into that impossibly narrow tube, that I realized I had to do something. It was too late for an anti-anxiety medication. I was there, and had to decide to proceed or go home. Wanting to get to the source of the reason for needing the MRI, I decided I would proceed.

Here is how I survived nearly an hour in the “coffin.”

I shut my eyes and didn’t open them until it was over.

I invoked deep breathing and mindfulness. The cacophony of excruciatingly loud noises (a variety of different ones, different pitches, tempos, etc.) started up. I listened mindfully, making “music” of the beats. I noticed two different sounds, not beating in the same rhythm. I noticed the different pitches. I imagined what else they sonded like. (Admittedly, some were like nothing else in real life.)

I employed counting to pass the time when told how many minutes each blast would last. Counting slowly made the time seem shorter.

FINAL TIPS: Whatever you do, DO NOT WEAR hearing aids to this exam. If you have better ear protection than 30-decibel reduction they provide, bring them. Their measly earplugs do nothing!

I am rethinking the next time I need imagining. I might prefer the pre-medication and drinking icky stuff for a 10 minute CT scan to the energy drain it took to survive the hour-long MRI. But that’s me. If you don’t suffer from claustrophobia, you will probably be fine with an MRI and lessen your exposure to radiation.

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I have read much about false memory in cases of abuse or other traumatic events, and of those who might have had ideas “put in their heads” by interrogators.

I haven’t looked deeply into the subject, but this phenomenon began to fascinate me when several people recalled events different from my own recollection of them. Reasons they recall differently may be due to noble intent, even if it didn’t actually happen the way they remembered.

I’m speaking of memories they had about visiting me in the hospital during a six-month confinement. I was astonished to learn they had visited me weekly. While I recall visits, it was not close to that frequency. I know that time flies by when I’m busy, as are these friends, so it may have seemed to be often to them. But on the other side of the bed, those long days stretched more slowly and most of the time I was alone, except for my husband who was there daily, if not twice some days.

I know my friends’ intentions were good. They also looked after my husband, who had a lot on his plate, with me, his job, our dogs and the house.  They fed him often, checked in with him for reports on my health and included him in their activities. So while I, in no way, intimate that my friends didn’t care, I postulate that memories have a strange way of morphing into what one might idealize for themselves.

I was also pleasantly surprised by visits from unlikely acquaintances – those I never would have expected to see. Some had health challenges of their own, making these visits especially meaningful. And I was disappointed by some I considered closer friends, who stayed away the whole time I went through severe health crises. But I wasn’t as surprised this time, as I had witnessed this while losing my previous husband and after his death. Just a different set of people and in a different time. I still wonder about the “whys” of these situations.

As I accept “a new normal,” albeit one with limitations, I enjoy more freedom than in those days in hospitals and I am enjoying the comradery of my friends in many settings. I will ponder the phenomenon however, as the human psyche and behavior is endlessly fascinating.

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I read an article this morning (link below) that triggered thoughts I have pondered in the past. At times, we rush by people who may be rude, inappropriate, reclusive. We usually respond in kind. But what if that person just experienced something awful, was in an abusive relationship, just received a dire diagnosis, had a severe lifelong challenge? What if they were in pain, had an invisible illness? Would you respond differently?

Chances are you’d respond with more compassion. As humans of any mature age, chances are you’ve been in a situation that no one (particularly strangers) would know about, and they didn’t respond nicely to you. I’m not discounting the fact that there are some people who are just plain mean, but there is often a reason.

Next time that happens, as long as it is not unbearable to do so, stop and think before responding. The next time something is causing you not to be so kind, hopefully someone will respond to you with the same consideration.

Thanks to the author who inspired this post.

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Some time has passed. I’ve had writer’s paralysis. Depression? Check. Pain? Check. Lack of motivation? Check. “Write about it,” people said. “It’s therapeutic.” The words just didn’t come.

September of 2015 brought yet an additional surgery that began another cycle of despair. Six months of living in a Connecticut hospital, waiting for the fistula that was left behind by the surgery to “fix” things, to heal – to no avail. Whatever pleasures I might have had to keep me going were taken. The caring surgeon, clearly frustrated that he couldn’t do more, struggled along with me to know what to do next. Tick tock went the clock. The weeks became months before a frank discussion moved toward finding a more experienced doctor who took on difficult cases. My doctor found a world class doctor in NY who could do it; he would fix this problem and life would finally go on.

But it didn’t. Even he professed he did all he could and suggested yet a higher level of care. Another month, another hospital, another doctor, also “world class.” “Yes, I’ll take the case,” he said. Another surgery; more pain; more time slithering away. A temporary fix; an interim step, perhaps to a more complicated end solution I am not ready to entertain. But this one, we hope, enough to get me home for a stretch, to live half a life. Half is better than none, right?

So I prepare to go home after 8 months of confinement with limited pleasures restored for a time, to take care of the unfinished business of living. It is a mixed bag. Just as the convict about to be released after a long confinement, who lived miserably but knew what to expect. So too, it is with me. The fear of the unknown. Being more than a nurse call button away from help. Being in a different state than my medical teams. And feeling like such a burden to my husband, who has never uttered a word of being burdened, rather expressing nothing but utter happiness that I will be coming home.

This journey is a long one but it is my hope there will be something at the end worth waiting for. Just normal, boring, everyday life is all I’m asking.

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Our annual trip to Maine was up in the air. Should I go so far from my medical team (8-10 hours by car)? If not, should my husband go for his much deserved vacation and leave me home alone? How would cars be juggled? Would I see my west coast son if I didn’t go? All these questions had to be considered. I had already cancelled my teaching obligations and gave up any possibility of attending any art classes myself – two of the things I look forward to each year.

As we approached the weekend we would leave, I felt good enough to chance it. We planned only one week, rather than our usual two, to hedge our bets. Being in the woods, sitting on a screened porch overlooking a lake was just what the doctor ordered. I spent little time in the kitchen. My boys and their friend cooked and we went out to dinner. I even ate a 2.5 lb. soft shell lobster!

The healing power of family and nature is certain. I was out of bed all day (albeit resting and sitting a lot). When I got back home, I was able to be out of bed, doing things around the house, food shopping, laundry, etc., before tiring.

Now that I feel some recovery is occurring, I need to face the rest of the journey: another surgery in the risky zone and a minor one to complete the mastectomy/ reconstruction process. But I have survived this nearly one-year nightmare and feel almost human again, and that counts for something.

This portion of the experience is being wrapped up with this post. If I write any more about related subsequent events, they will stand on their own. Thank you for sharing my journey with me.

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I sought out a pain management specialist who stated that the pain could be caused by spinal issues. An MRI revealed some degenerative, age-related lower spine compression. He changed my pain meds to a different form of morphine and gave me 2 spinal injections, which were not guaranteed to work. Neither the morphine nor the injections brought any relief.

A week later, my fever shot up to 103°. I returned in desperation to my original surgeon. Blood tests revealed little evidence of infection, yet I was feeling very sick, unable to eat and so thoroughly despondent. We discussed longer-term antibiotics under the care of an infectious disease doctor, since my pattern revealed that I would spike fevers weeks after the completion of an antibiotic cycle. We also discussed next steps to “fix” the last remaining issues with the abdominal surgery – repair of a fistula, hernia and some reconstruction of the external abdominal surface.

My primary care doctor reviewed everything, concurring with the plan. She changed up some medications. The infectious disease doctor changed the antibiotic and prescribed it for another month.

I was sick and tired of the fuzzy feeling caused by the narcotics and decided to wean myself off, since they didn’t seem to be effective any longer and I did not want to be reliant on ever-increasing doses. I weaned off them within two weeks and didn’t feel any worse than before. The fever subsided. I felt a lot better. The pain lessened, but it came and went. Eating seemed to hurt more and I was suspecting adhesions and scar tissue in my abdomen were causing much of the pain.

To be continued . . . . .

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