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Posts Tagged ‘pain’


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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The second part of protecting against BRCA1 gene’s wrath is prophylactic mastectomy and reconstruction (optional, but for me, mandatory). Although I was still having severe pelvic pain, I was anxious to get the rest of this mess behind me. Besides, I was hurting and largely in bed anyway, so how much worse was this going to be?

I got medical clearance from my primary care doctor to proceed. Infections were under control (a definite must for breast implant placement). She and the surgeons (all 3) asked if I really wanted to proceed with surgery given my present problems and pain. I wanted to move forward and not have to worry about getting breast cancer too.

On June 3rd, the surgeons spent just 2 hours conducting the mastectomy AND reconstruction, with no complications. The surgical postop pain was very tolerable and the recuperation swift. Yet the pelvic/abdominal pain persisted.

To be continued. . . . . . . . .

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I had missed my 3-week vacation to France. I sorely needed a good, healing change of scenery. I decided Puerto Rico would be a vacation unlike most of our typical active vacations. Warm climate during our miserable winter, quick plane ride, US protectorate, possible beach visits (I am NOT a beach person, rather an explorer, but it sounded like the right location for recuperating). We booked a weeklong trip for the end of February. I was feeling good.

Unable to lie around, we explored the old city where we stayed in a small boutique hotel. The area is small and walkable when I am in my usual state, but the hills are steep and the temperature was high, thus challenging for this weakling. Still, I enjoyed the sights, food and time away with my husband.

We arrived on a Saturday and roamed the area for the next few days. Then – you guessed it – I was sidelined again on Wednesday, spending the rest of the week a limited distance from my hotel room. I was having extreme pain in my pelvis. We got home on Sunday and I returned to the hospital to look for a cause for and management of the pain, as well as intermittent fevers. In the coming months, I spent three separate weeks in the hospital and many visits to various specialists to test for bladder issues, intestinal issues, infections, etc.

I was discharged the last time, on heavy narcotic medications, with no more information on the cause of pain. Feeling desperate and too sick to seek out new opinions in faraway places, I confined myself to bed most of the day. My appetite had waned and I lost another 5 lbs.

My resolve had thawed. The hopelessness returned. More astonishing was the fact I had held up for so long under the circumstances, for so long before.

To be continued . . . . . .

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Murphy’s Law, if you are unfamiliar with it, says that if something can go wrong, it will. I don’t ascribe to pessimism, so it didn’t occur to me that anything would go wrong. Yet, this time, it did – in spades.

After three hours of probing to find the parts to remove, and much blood loss, my doctors abandoned the robotic surgery and opened my abdomen. (SQUEAMISH WARNING: if you are easily repulsed by medical description, stop here.) Due to multiple abdominal surgeries, there was a lot of scar tissue and many adhesions. An open surgery allowed them a better view of what they were dealing with. Eventually, after 6 hours and a transfusion of 7 units of blood, they accomplished their mission. But not without consequence. The early days were tenuous and my survival uncertain.

During the next 3 weeks, there were multiple additional surgeries (they called them “cleanouts”). I was in an induced coma for most of it, with occasional moments of lucidity when they needed me to answer questions and/or when anesthesia unintentionally wore off. All I can remember of that time are snippets: hallucinations of my surroundings, when later considered, were variations on the same room I was in throughout; never-ending pain that made me want to die; paranoia that others were doing things to me against my will (sort of true when my husband had to act as my healthcare proxy); things I thought I dreamt, when I actually was experiencing them, and things I totally imagined; feeling stupid, angry and frustrated when I couldn’t find the pain pump or nurse call buttons; and did I say unremitting pain?

In considering death, I begged my family to let me go. I had carefully considered the ages of my children. While not entirely grown, they were old enough to survive without me, I thought. It wouldn’t be their preference or mine to leave this world then, but it was a good alternative to the hell I was living. But everyone kept telling me I was strong – that I would survive and that I should keep fighting. All that did was make me angry. They didn’t know, couldn’t know, what I was physically experiencing. I asked for (I think I asked – or did she just know to come?) a trusted Rabbi and friend who listened to me. She reiterated the considerations of entering hospice (no turning back), yet said she would intervene with my family if that was what I wanted. I was heard! My family couldn’t possibly hear me – they were too close to the situation. I breathed my first sigh of relief.

But something interesting happened during that meeting. Because I felt I finally had a voice in what was happening to me, I loosened the grip on my death wish. I got incredible support from the ICU nurses, helping me get out of bed, even if only to slide over to a chair. My family and friends rallied, prayed, sent cards, took care of my husband and son. My LA son came east to visit twice during my 2-month hospital stay, which was shorter than the 4-6 months predicted by the doctors.

To be continued . . . . . . .

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Fair warning . . . . especially to family. The feelings expressed in this poem reveal deep, personal pain in the context of the family rift. If you feel it may negatively influence you about the family, please read no further.

These past six months have been difficult. While much of my life has been lived without the support of my mother, her decision to cut herself off from two of her three children is unfathomable to me. I understand some of the logistical and survival reasons for her choice. Yet I cannot imagine, for any reason, EVER, being estranged from my sons, therefore can’t understand how she can do it. Never mind the pain it might cause her (if it indeed does), but her lack of consideration about her children’s feelings – I just can’t wrap my head around it.

I’ve considered reaching out – many times – but I already know the score. I’ve been there so may times, each time emerging with freshly opened wounds, so I decided to stop hurting myself any more. Only a fool keeps doing the same thing, expecting different results.

So, when I pause to think about things, I become angry, in self defense. Writing is cathartic – so emerged the first poem I have written since I was a teenager. Here it it.

You Told Me I Couldn’t

Act like a child,

even when I was one

I had to be the adult you couldn’t be

Develop my academic talent

When I qualified to skip a year of school,

you held me back

Go to religious school when I wanted to learn who our people were

because you wouldn’t join the temple that offered you

a scholarship you viewed as “charity”

Take music or dance lessons

because you didn’t have the money

yet your poorer friends found a way to send their children

Go to a prestigious public school

because you didn’t want me to ride the subway

You thought your fears should be mine

Claim my spot in a desirable college

because I couldn’t go to that school

So I dropped out of a different college, already defeated in my belief I

that I could accomplish anything great

Go to art school

because I would be a starving artist

even though my teacher saw promise and helped me create a portfolio

Do the right thing

because when I stopped to help an injured child along my way,

you punished me for losing the money I was given to bring home dinner

Go to college unless I could find the money to pay for it

because you didn’t think my education was important enough

Or maybe you didn’t want to see me succeed

Your actions and words broke me in places no doctor could fix

But years of reflection, therapy and depression, provided some glue to hold me together

while I built my own foundations of strength

I made my life meaningful in spite of you

In the face of loss of

my childhood,

my innocence,

my health

jobs,

old friends,

my home,

two husbands,

and others I loved,

I built a life of worth, and still find it possible to be grateful for every bit it

A devoted husband

Two beautiful sons

A good education

Health

Friends

Meaningful work

And the privilege of finally, finally, being all those things you said I couldn’t be.

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I was (painfully) reminded today of a deep, dark secret I have carried silently all my life. The memory was brought on by hearing the lyrics of Kelly Clarkson’s “Because of You.” It  expresses her angst at the time of her parents’ divorce, as she addresses how she felt toward her father. My situation is not the same, but the lyrics could have been written by me, and addressed toward my mother, who discouraged me from being who I was meant to be, when I was too young to do it without her support.

Most people who know me believe I am always confident, capable and smart. Perhaps I am, but not on the inside. Even evidence of many accomplishments cannot erase the feeling of inadequacy and constant questioning that occupies the mind of someone wounded early in life. Our images of ourselves are formed early. We become who we were told we should be – at least as it is fixed in our minds. If we are told we are stupid, we believe it, even when we see evidence to the contrary. If we are told we can’t be successful, we often won’t be. And if we do succeed, we never really own it. We feel like impostors.

I understand intellectually that my mother could not nurture me the way a mother should nurture her child. She has even admitted to me that she was not “that kind of mother.” I know she never learned from her own mother, who was more wounded than she. So, I forgive her, as she was incapable of giving me what I needed. Even with this forgiveness however, the feelings of never being good enough remain. I vacillate between feeling proud and able to accomplish my dreams, and feeling undeserving of success and happiness. It just depends on the day, the season or perhaps something that happens to trigger it.

While I still struggle and likely always will, my awareness of how it affected me made me determined not to repeat the mistakes of my mother. My children know how special they are, that they are loved unconditionally and that their happiness is all I want for them. If their journeys take them to challenging places, they will learn and grow from them. I will not urge them to refrain from following their dreams if they are untraditional. They will not be afraid to stretch their wings and fly, but they will know I will be there to catch them if they tire or fall, and help them back on their journeys.

That is all I can give them and I think that is enough. That is all I ever wanted.

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