Posts Tagged With: endocarditis

Day 67: Fears AND Antidotes!

Today, I still have fears that I might be ill with endocarditis.

I am not quite as paralyzed by fear as I was yesterday, when I wrote this blog post  before leaving home in the morning.

 (I am letting go of judgment, right now, of how confusing that post might have been, and about how I might have included Too Much Information.) (Poof! )

Better.

So even though I’m feeling more centered and calm today, I am still in the challenging and difficult position of waiting for the results of the test for endocarditis.

When I work with people in therapy, I point out to them what a difficult place this is to be: Not Knowing, while waiting for important results. How stressful it is being in a position where you have no control over an outcome which may have a major impact on your life.  (For example, waiting to hear if you’ve gotten into the school you want, waiting for the results of a biopsy, etc.)

I often forget to tell myself what I invite my clients to tell themselves: This is a very difficult place you are in. Therefore, be as kind to yourself as possible.

In groups I do, I hear this very common theme: we can see what works for other people, but it is hard to apply it to ourselves.

That reminds me of the following antidote for unhelpful thinking:

The “Double-Standard” Method. Instead of judging yourself harshly, talk to yourself as compassionately as you might to a friend with a similar problem. Also, ask yourself, “How would I react if somebody else did this?”

That gives me an idea for the rest of this post for today.  I’d like to focus  on antidotes. And when I say “focus on”,  I mean “ramble about in that general direction until I get to the point I want to make.”

 I am now going to reframe some negative mind-reading I am doing,  assuming that you, my reader, might find my writing style annoying.  I am going to reframe that into this: “Maybe some people find my writing style … charming!”  Oooh!  That helped me feel better. I will now reframe again into a more balanced thought:  “Some people might find my writing style annoying. Some people might find my writing style charming. Enough people will find it understandable and worth reading.”

Better.

Yesterday, I did two groups at work, and  I was very focused on inviting people to look at The Positive.

Okay, time for a digression about a way I think about therapy.

Digression about How I Think About Therapy

 I think there is a duality about therapy.  I think it is important to leave room for people’s ambivalence — their experience of the positive AND the negative. I think it’s important to leave room for people’s hopes AND fears.  The light AND the dark.  The good in them AND the not-so-good in them.

I think it’s important for me to show my acceptance of exactly where they are AND have hope with them for what they want to change — in themselves and in their lives. And I work hard to invite people to do the same for themselves.

I think it’s important to invite both sides — the positive and negative. But I want to be careful to invite the negative, especially, because — if I focus too much on the positive —  people might not feel seen, with all their pain, shame, and fears about themselves and their lives.

Lots of clients/patients (I don’t like those labels, but I have yet to find a title I like for people I see)  tell me that others  in their lives don’t want to hear their “negatives” — their  depression, anger, despair, fear, or hopelessness.  The people I see at work often tell me they feel bad about  how other people in their lives react to their pain. This might make them not want to talk to other people. It can cause them to isolate.

And I understand how people who love my clients/patients — or who are otherwise connected to them — might not want to see my clients’ pain.  These people may feel exhausted, helpless, or incompetent about what to say.

I think that’s a big reason why people go into therapy, actually, because they are desperate to have the “negative” parts of themselves — their anger, hopelessness, fear, despair  stuck-ness, etc. — acknowledged, instead of avoided.

So human beings are both  positive and negative,   holding both hope and hopelessness — and they are ambivalent about many things.  By “ambivalent”, I mean that they have two conflicting feelings. For  example, someone might want change AND fear change at the same time.

End of Digression about Therapy in General

In the groups I did yesterday, I wanted to go more towards the positive  (while, at the same time, leaving some room for negative thoughts that were in the room, too).  But I remarked in myself that I really wanted to focus on antidotes yesterday.  I wanted to focus on hope, not on leaving as much room for people’s pain in the moment.

And I named that, in the moment, to the group members.

And I knew (although I didn’t name it) that my wish to go toward the positive was related to my fears about my own health.

And we focused on antidotes, during the group.

As I said in this blog post, I like to use props in therapy.  And two of my props are (1) The Bowl of Distortions and (2) The Bowl of Antidotes.

bowls

There they are — straight from my office to your screen!

What’s in The Bowl of Distortions?  Slips of paper containing the definitions of all 13 cognitive distortions.  The Bowl of Antidotes holds slips of paper containing descriptions of ways to challenge these (which I keep adding to).

Yesterday, because I really wanted to focus on the positive, I suggested that we use the Bowl of Antidotes. And each person in the group chose an antidote from the bowl,  and talked about it with the group  (including details about whether the person used that antidote, how they used it, whether it was useful, what got in the way of using it, how to use it more, and so on).

Here are some antidotes the group members chose from the bowl yesterday:

  • List the positives. To deal with the tendency to focus on the negative, make lists of good things that are happening, good things about yourself, and things that you are accomplishing (even little things). Focus on what you ARE doing, rather than on what you’re NOT doing.
  • The Semantic Method.  Substitute language that is less emotionally loaded and less judgmental.  For example, instead of telling yourself, “I should have known better,” you could say, “I didn’t know that.”
  • Cost-Benefit Analysis.  List the pros and cons of a negative thought (like “I always screw up”) or a behavior pattern (like isolating when you’re depressed). A simple version of this is to ask yourself, “Does this [thought or action] help me?”

Another antidote somebody picked from the bowl was “The Double Standard Method,” described earlier in this post. And this one came up, too, which the group discussed at length:

  • The “In Case of Emergency, Break Glass” Technique. Prepare for the possibility that when you are feeling at your worst, coping strategies and solutions might be difficult to remember. Write down a couple of things that might be helpful to remember when you are feeling bad, and put that in a special place. Also, consider telling somebody else about these “emergency messages,” so they can remind you.

The members of the group really liked that one, and talked in detail about ways to put this one into effect.

Here’s two more antidotes, which we didn’t pick yesterday in the group, but which I’ve been trying to use a lot the last couple of days:

  • Reality testing.  Ask people questions to find out if your thoughts and concerns are realistic or true. This is a particularly effective response to the distortion of mind-reading.
  • The So What? Technique. Consider that an anxiety-producing possibility (even the worst case scenario) might not be as bad as you fear. For example, “So what if this one person doesn’t like me? Not everybody is going to like me.” or “So what if I lose my cell phone? It’ll be an incredible hassle, but I’ll be able to deal with it.”

Antidotes can really help.

Thanks for reading.  As always, I would welcome any comments on any antidotes you find helpful.  And, I love collecting antidotes, so let me know if you have others you like in addition to the ones listed here.

© 2013 Ann Koplow

Categories: personal growth | Tags: , , , , , , , , , , , | 10 Comments

Day 66: Random Thoughts, before an 8:30 appointment

I woke up this morning feeling scared, and my natural preference for that was to isolate.

So I was choosing to write in my blog, rather than to talk to my boyfriend.

I noted that, and realized that it might be more helpful to connect with another person.

So I consciously chose to talk to him, briefly, before coming downstairs to write this blog post.

My wish this morning is to write this post before I leave for an 8:30 dentist appointment.

I know that what will help me to write this blog post quickly is to give this post a title like “Random Thoughts,” because that will quiet down my critical self, and allow me to just write, rather than judging and rewriting as I go.

I woke up pretty scared this morning, immediately aware of my hip pain, and my associated fear that I have endocarditis.

I wondered if this hip pain is “psychosomatic” — that there is actually nothing wrong with me.

I also have been worrying — now that I’ve blogged about this fear, sharing it with who knows how many people — that sharing this might have been a mistake.

Of course, it’s done, and I can’t undo that, and worrying about what is in the past does not help.

But that worrying has been very pervasive since I posted yesterday, so it might be helpful to look at that for a moment.

What seems to help me — when I’m scared — is to identify a link with my past, when I was a scared little girl in the hospital, dealing with heart problems and surgeries, alone without my parents for most of the time. (I write more about that experience, here.)

I had a pacemaker, starting at age 10, and because technology was so new, the pacemakers would break, a lot. The batteries would run down, the wires would break in various places, once the casing of the pacemaker — which wasn’t strong enough — “got permeated by my body fluids” (I swear I remember them using that exact phrase, when I was a kid).

It’s occurring to me now that my family and I, if we had been a litigious bunch, I suppose, could have sued about this stuff. Because, looking at it now, with the eyes of an adult, in a law-suit-permeated society, I guess we could have “made the case” that they were putting these pacemakers in a child before the pacemakers had been tested enough.

But this was at the dawn of pacemaker technology, and we didn’t have a choice. It was either use new pacemakers or lose me. At least, that was the story the doctors were telling, and i think that was a reasonable story at the time.

I remember my mother telling me the story of how the doctors broke the news to them that they had decided to put a pacemaker in me, at age 10. I had a heart stoppage during an observation visit at the hospital, which the doctors had never witnessed before. We think that my heart had stopped twice before, at that point, because I had fainted, once at home and once in the school yard. “Heart stopppages.” That term might not be accurate, right now, because in all three cases, my heart started up on its own again.

But the doctors still reacted very strongly when I fainted at the hospital, and they realized that my heart had stopped (and then started up again). They totally changed the game plan, and decided to put in a pacemaker the next day. My memories are that they had never even mentioned a pacemaker as a possibility before. (Or maybe they had mentioned it to my parents, who then kept that possibility from me. But I don’t think so.)

So after I fainted in the hospital (which I think was either on November 20th or 21st, 1963), the doctors decided to put in a pacemaker ASAP (which was on Friday, November 22).

That is a date which some readers will recognize immediately. November 22, 1963.

Anyway, I will say more about that in a future post.

So to return to my immediate goal this morning — I want to write a post that is helpful (for me) (and, therefore, perhaps for others) and reasonably coherent, by 7:15, which is 13 minutes from now.

So what is it that is most important for me to communicate this morning?

These random things:

When I am more scared than usual, there is usually an association with my past — when I was (apparently) a terrified little girl, alone in the hospital.

It helps me to name that. It helps remind me that I am NOT a scared little girl, alone in the hospital now.

I have skills I didn’t have then.

I have knowledge I didn’t have then.

I have connections I didn’t have then.

While I feel like I’m alone — while I feel like I have to withdraw from others in order to protect myself — I am not alone.

I think that’s what I needed to write this morning. I feel better now and ready to go out into the world, meet my obligations of the day, and bear my fears about my current medical condition.

However, I have seven more minutes!

So I’ll use the time to write down some other, less crucial random thoughts, dear reader.

Here they are:

When I use the term “dear reader” in my blog (even though both my son and my boyfriend don’t like that term), it’s my way of consciously trying to connect.

I’m good at connecting with people. I had to be, to survive as a little girl alone in the hospital.

I love that I’m good at connecting with people. It makes me good at my job, as a psychotherapist. It adds color and value to my life, every day, at work and everywhere else I go.

When I’m more scared, depressed, in worse mood, “more symptomatic” (whatever language I use for feeling worse), I tend to isolate.

And part of isolating is mind reading — projecting onto others my fears and judgments about my self.

One thing I’ve been doing since I blogged yesterday — which was a tough and important post for me to write — has been feeling some shame about sharing things that feel that personal — and medical — with people I know but also many, many people (even though I don’t know how many) that I don’t know.

It has been occurring to me a lot lately that blogging — sharing in the blogosphere — is very much like doing a therapy group. It evokes a lot of the same benefits — connecting and letting go of old habits and fears — as well as the same fears — have I said too much? will people judge me?

Sometimes I feel like a facilitator (group leader) when I’m doing this “Blogging Group”, and sometimes I’m more of a participant.

When I write about illness and fear, I feel like more of a participant.

Being a participant in a group is riskier than being a facilitator/group leader.

I have three more minutes!

It’s helping me to write down these thoughts.

There are lots of other things that I might write here, because I have lots of thoughts and have had a rich and complex past.

But what feels most important for me to say?

I guess I want to let you know that I have been projecting some old fears and hospital experiences on to you — my readers.

I’ve felt scared because I told you, yesterday, about my fears of having endocarditis. And that got me into a whole series of scary thoughts, which remind me of when I was a kid in the hospital, with a failing pacemaker.

Here are some thoughts that came up when I was a kid thinking something was wrong with me medically (that my pacemaker was failing), and which come up now (that I am afraid I have endocarditis):

Should I tell other people about this?

If I do tell other people about this — that I’m afraid that there is something wrong with my health — something that might be life-threatening — there are some risks.

I might be wrong. If I’m wrong and I got other people scared, I might lose them. They might get annoyed that I caused them unnecessary worry. I might lose credibility with them. “She’s the girl who cried ‘Wolf!’ We stopped listening to her!” And I did feel, when I was a kid, that I had to be right, 100% of the time, when I let people know I feared that my pacemaker was failing. If I was wrong one time, I believed THAT is what would stick — and they would never believe me again. But if I didn’t say something, I might die, because of a faulty pacemaker, which I was aware of, because my heart was skipping, but which was intermittently malfunctioning, so that the doctors could not replicate the problem at first. So i DID need to say something, But I might be wrong.

So being wrong was/is very scary.

I might be right. If I was right, I would need to have surgery (or — if I’m right about the endocarditis, I’ll need to leave work for a while and be on IV antibiotics for 6 weeks, and this will have been the fourth time, and last time, they said they might need to take some drastic measures, like extracting all my teeth) (NO!!!).

So being right was/is very scary.

Okay, I ran three minutes over. I think I can still get to my appointment on time.

I am not reading this over, at all, dear reader, before I post. I might, later, read this over and make some very basic corrections, if my fear is that I’ve lost you too badly. I want you to understand me!

Okay, now I’m done.

One more thing, of course: thanks for reading.

Categories: personal growth | Tags: , , , , , , , , , , | 12 Comments

Day 65: To dominate the impossible in your life

“To dominate the impossible in your life” is a line I really like, from a song I really like (“The Rhythm of the Saints”), from an artist/songwriter I really like (Paul Simon).

I’ve used that line, many times, to describe dealing with a situation that seems unbearable.

How to bear the unbearable?

Sometimes, you just have to. 

You may bear the unbearable by looking at the situation differently — by telling the story differently.

And telling the story differently is often a wonderful coping strategy.

Sometimes, though, it can involve denial — choosing not to see part of the truth.

On the other hand, how can we see all of the truth of a situation?  The truth is usually open to interpretation. As I wrote way back on Day 11, in  You Might as Well Be the Hero of Your Own Life , we make choices whenever we tell stories.  And our lives (and we) are so complex, we always make choices when we tell our own story.

So we have to leave things out.  Is that always denial?

And this makes this whole issue of “the truth” even trickier:  As we do our best to make meaning of life, we will use some cognitive distortions .

I often refer to Cognitive Distortions in my posts here.  Cognitive Distortions (a term used by Cognitive Behavioral Therapy) are just human ways of thinking. That’s why I don’t like the word “distortion.”  (Yes, I have a judgment about that.)  (Yes, I have judgments about many things.) (I’m human.)

In my work as a therapist, I often choose to use the term “Automatic and Unhelpful Thoughts,” instead of the term “Cognitive Distortions.”

But whatever I call them, I think those thoughts are inevitable, at least for most humans I’ve met.

Especially “Fortune Telling.”

We don’t know the future, but — in order to feel safe enough — we will make predictions about the future, based on our past.

I have yet to meet a human being who does not use Fortune Telling.

And I have “debates” with people I work with — in individual and group therapy — who argue that cognitive distortions are useful.

Of course, they’re useful, in some way.  Why else would we do them, and keep doing them?

However, it’s important to notice when trying to predict the future gets in our way.  When it makes us anxious.  When it holds us back from pursuing something that might help us. When we automatically go to the worst-case scenario (using a particular “distortion” called “Catastrophizing”).

So how do we figure this all out?  How do we use what we know, from the past, to feel safe, without restricting ourselves with fear?

How do we dominate THAT impossible in our lives?

So far, this post (except for the reference to Paul Simon and his song) has been all about generalities.

I think people learn better from the specific, so I’m going to give you some specifics now, from my life.

Here’s something I deal with:

I was born with a very unusual heart.

The on-line article I’ve linked to, above, is a pretty good one, I think. You may not want to read it.  Maybe you do.

If you do read it, I’m going to suggest something.  After you read it once, read it again (maybe pretending that you just received this diagnosis) and look for the things in that article that sound reassuring.  Then, read it again, looking for the things that sound scary.

Because both of those things — the reassuring and the scary — are there.

The condition is really rare, so a lot of people don’t  know about it. (As a matter of fact, I once went on a date with a cardiologist, who did not know about this condition.  When I told him about it, he made a very common mistake about it — confusing it with a much less rare condition.  I corrected him.) (That was our first and only date, by the way.)

People with my heart condition can lead very normal lives — so normal that sometimes it’s not even known they have this condition until after they die (sometimes at a very old age).

People with my heart condition can be quite sick, or can become quite sick later in life.

Once, when I was about two months pregnant with my son, I stumbled across a Very Scary Article about my heart condition, which said that women with my condition should not become pregnant because pregnancy would seriously weaken their hearts.

When I called my cardiologist in a panic, this is what he said to me, “Ann, you have such a rare condition, that any article about it uses a sample size that is so small, that the results are suspect.”  And he told me that he did not agree with the article, and he made a great case for why that was. So I stayed pregnant.  And I have an amazing 15-year-old son.

Thank goodness that I believed my cardiologist.  Because I could have easily decided that he did not know what he was talking about  — because, after all, he was making a recommendation based on a too-small sample size, also.  I might have left him for the care of a cardiologist who did believe that I should terminate my pregnancy.

But I didn’t.

But while I was pregnant, how could I make the “right” decision?  I would have to have been a fortune-teller. I would have had to have been psychic.

Which I wasn’t.

So I did the best I could.

And it was the “right” decision.  In retrospect.

That’s what’s so tricky. There is often no “right” decision.  We just do the best we can, with the information we have, believing in the experts we trust.

And if we make a decision that turns out to be the “wrong” one — that is, the experts weren’t correct, the outcome implies that we “should” have done something different — we need to make peace with that, too.

Otherwise, we will be hindered — and sometimes tortured — by the past. The past will get in the way of us living in the moment.

Which of course, happens to all of us humans.

Here’s an “antidote” I suggest to people, about making peace with the past.

Look at the Context.  Instead of automatically blaming yourself for a problem, think about the other factors that may have contributed to the situation. If you regret a previous action, consider that you might have been doing the best you could at the time.

Anyway, I was going to write in this post about a particular aspect of my condition that I’m finding difficult to bear right now.

It’s not mentioned in the article I linked, but people with my condition, if their heart valve leaks (which it often does) are prone to endocarditis.

(By the way, I’m assuming that some people who are reading this do not want to read the links here, for their own reasons.  For some people, the links might be TMI — Too Much Information.  That is completely okay with me. And, I hope, you can still read this post without reading the links and still get something out of it.)

Anyway, I have a leaky valve.

Therefore, I am prone to endocarditis.

It’s a potential danger, which my wonderful cardiologist communicated  to me, when I was in my 20s.

That was a communication I received, despite my human wish to deny that as a possibility.

So, when I was 7 months pregnant with my son (20 years after my cardiologist communicated his concern to me), and I developed a fever, I asked to be tested for endocarditis, for the first time.

Now, we (me and my medical team) thought my request to be tested was kind of weird, because (1) I had never developed endocarditis before and (2) there was no reason to believe that I had endocarditis.

I did not have any symptoms of endocarditis, except a fever.

I had a fever because I had the flu.

But, my cardiologist, when I called him and told him, “I would like to be tested for endocarditis,” said the following:

“Well, why not?  It couldn’t hurt.”

When I went to the hospital to be tested, this is what the Endocarditis Specialist said to me,” You have a fever because you have the flu.  So, there is no reason for me to test you for endocarditis.  You’ve never had endocarditis. However, since you’re here and your cardiologist has ordered the test, I will do the test.”

And when the results of the test came back, I got a call from the hospital as follows, “Get in here right away.  You have endocarditis.”

And the test caught it so early, that I was fine.  My heart had no damage.

However, the treatment was that I needed was to be on IV antibiotics for six whole weeks.  And the doctors told me that the medication they needed to use might affect the hearing of my unborn child. But they needed to use that medication.

I had to dominate that impossible, and choose the treatment.

The day I got off of the six-week regimen of IV antibiotics, was the day my water broke.

My baby did not have any hearing problems.

My heart was not damaged.

Okay, here is where the story gets even weirder.

About six or seven times since that first bout of endocarditis, I have asked to be tested for endocarditis again. Each time, my symptoms have been different. Each time, the doctors could have said, “There is no real reason to test you for endocarditis.”  But they didn’t say that. They tested me for endocarditis.

Two of those times, I had endocarditis.

Each time I had endocarditis, we caught it quickly enough that my heart was not damaged.

The other times, I was “wrong.”  I did not have endocarditis.

Several doctors who know me, when they tell my story (sometimes in front of me, to medical students) describe me as “amazing.”  They say, “It’s like she’s psychic.”

But I’m not psychic.  Nobody is psychic.

I guess the way I make sense of this story is that I must be incredibly tuned in to my health and my body.

But sometimes I’m wrong. And I get anxious “for no reason.”

About two weeks ago, I started to wonder whether I had endocarditis.

There were lots of reasons why this might not be true.  The symptoms were this: I have a pain in my hip.

That’s it.

There are lots of reasons why my hip might be sore. I walk a lot. I just turned 60.  I’ve been wearing boots that don’t give great support.

Lots of people have hip pain.

I don’t have a fever.  Before, when I’ve had endocarditis, I’ve had a slight fever.

After I first got the idea that I wanted to be tested, I talked myself out of it.

Which I’ve done before. Sometimes, when I get the fear of endocarditis, I decide not to get tested.

So, when this thought has come into my head over the last week or so — “I am afraid that I might have endocarditis,” I talked myself out of it.

I did not want to get tested. I wanted to believe that I was just imagining things.

Because I have, many times before.

However, after talking to several experts and friends, I decided to get tested yesterday.

But coming to that decision — weighing all the factors, trying to figure out what the truth was, trying to balance my fears about the future and my knowledge of the past, telling myself I was not psychic (which is true)  after having had all these experiences where a “psychic” feeling had prevented severe heart damage, figuring out how I can live my life safely but not be paralyzed by fear — was really, really hard, dear reader.

It felt like I was trying to dominate the impossible in my life.

I made my decision — I got tested.

I feel fine about that decision.

I feel fine as I am writing this post.

My boyfriend, Michael, thinks I don’t have endocarditis. He’s been pretty psychic, himself. He predicted, in 2010, the outcome of the last presidential election, when nobody was predicting the winner.

I will find out in a few days.

Whatever the outcome, I will work hard NOT to think in terms of “right” or “wrong” decisions — that is, whether I “should” have gotten the test, or not. Whether I “should” have gotten the test earlier.

I  plan to tell myself that I did the best I could, with the information I had.

Phew.

I will let you know, when I get the results.

Thanks for reading, so much today!

And I wish you all the best, in dominating the impossible in your life, whatever that might be.

Categories: personal growth | Tags: , , , , , , , | 19 Comments

Blog at WordPress.com.