Day 1. Is This The End of the Road?

So, dear friends… on the eve of my “death,” I must stop to consider a few big ideas.  More than a few, really.

I know logically that on November 13, 2012, the day I turn 48, it is no more likely that I will die from Vascular Type Ehlers Danlos Syndrome complications than from getting hit by a limousine bus on its way to Dulles International Airport.  There is no more likelihood of that doctor’s prediction coming true than if the doctor himself had told me he had placed a voodoo curse on me that would take effect on my 48th birthday.

Still, it’s easy for me to make a brave face in public and pronounce the doctor’s “curse,” of a shortened life to be fake. However, new, more serious health conditions have begun to show themselves so close to this infelicitous birthday: pulmonary aneurysms (with the attendant shortness of breath), and now a new aneurysm in my brain. It is easy to wonder whether that doctor was right after all, or whether I am, at age 48, about to stand on a slippery slope that drops away into nothingness.

When, in the dark of night, or on particularly grey days, I let my deepest imagination run amok, I worry that I will die soon, and that, as Hollywood has instructed me, I ought to have a Bucket List, that storied list of things to accomplish before dying.

For most people, making such a list is a game of pretend, like deciding how to spend the money they wish to win in the lottery the next day. But when I try to make my bucket list, it’s serious business.  The items are things I intend to start doing tomorrow.  That’s a lot of pressure, so much that the paper stays blank.  What to do? Travel seems to me like the best bucket list plan, so good; I can’t think of a substitute. Yet, what kind of travel makes sense for me, I ask myself, when my leg, feet, arms, elbows, knee and shoulder joints hurt so much from doing three activities in a day (like a doctor appointment, grocery shopping, and going to the tanning bed) that I am in bed the following day), so much that traveling in an airport sounds not just impossible, but awful, even to me, sworn travel lover that I am.  I love travel so much that I can’t think of a substitute entry for my bucket list. If I don’t find out about the rest of the world on my last venture, well, what can I possibly do?

In the true twenty-first century mode, I allow an internet search to do the thinking for me.  Happily, I find a Pinterest page called Kate’s Bucket List.  Each of her fantastic images has white text across the middle: “I want to catch the bouquet at a wedding,” or “I want to visit Turkey and drink tea from a Samovar.”

One reason I find Kate’s Bucket list to be so wonderful is that in addition to the expected travel items like,  “I want to go to NYC Fashion Week,” she makes wonderful wishes, like to dance under the stars, ride on the back of a motorcycle, and witness a wedding proposal.  They are unselfish wishes and communicate the simplicity and authenticity of a young girl—qualities I realize I am missing.  It is this kind of idea, and this kind of openness that I cannot locate in myself, and I realize that I have been looking for it for several years now.  I’ve tried, unsuccessfully, to explain it to my therapist as the sense of wonder and bewilderment I had in college, that gave me the unfettered ability to sit down and write, just any old time, about any old subject.  I had theories about important things.

I remember that I used to analyze couples and tell them (or more likely one half of the couple) that it was my theory that the best couples, the ones that stay together, are those who have found their neurotic compliment, their match in craziness.  Assuming it is true that all of us are a little (or a lot) crazy in our individual ways, we just need someone who understands and enjoys our unique sensibilities, and as much as possible keeps us from spiraling off the deep end.  I didn’t realize how flawed my theory was, but I believed it ardently and liked to tell people about it.  I had lots of those.

So, maybe my travel for my bucket list should be more amorphous than a single week-long trip to a geographical place.  Maybe my journey should be back to that place of earnestness, where I had theories, and took more delight in things.  It makes me happy just writing about it.  That’s a bucket list item.  I just don’t know how to attach an image to it and a label.c

Oh, there are a couple of things.  I want to wear a size 6 again.  And want to see the Barnes Collection in Philadelphia.  I want to see my nephews be successful, however they want to define that, in school, in life, and I want my little brother to find his path and be gloriously happy in life, and my big brother to find a new path and get the fantastic happiness he deserves.  I want my parents to live as long as possible, as healthy as they can.  But are those buckets?

Really, I owe Dr. Dumbass a great big thanks for his pronouncement about my diminishing years left on the planet when I was 44.  Otherwise, I would have kept on living with a dimmed introspection.  I would have cursed the bad days of my illness so much more than I did, because I would not have been aware.  Just for example, this week, I supposedly had 9 Days left to live; it would have been easy then to give up and go back to bed when I found it hard to get out of bed because of an all encompassing pain and fatigue, and I had to wear a wrist brace to type because my wrist was too sore and weak.  However, I understood the day to be special and important the same because it was Day 9. As a result, I made myself get up, get dressed, and make the day matter to me somehow. So what if I was not physically able to be jetting about the planet to the beaches of the Dominican Republic or to the Taj Mahal?

I made it as fantastic as Day 9 could be, given my circumstances. I have learned to do this as a mindfulness practice this year, on the days when I have felt good, and on the days like Day 9, that were not great.

And for all that practice, for the focus I placed on making myself aware these last 364 days, I came to understand that this birthday is momentous simply because I get to have it. So were all the others before it.  I just didn’t realize! All the more reason to celebrate.

What I learned this year could (and may) fill a whole book.  But as I reread my rambling, disconnected entries—and their generous replies—I am struck deep in my chest that the most important thing I learned, perhaps the most important lesson I have ever learned, is how much my friends and family—and even strangers—love me.

 How is that possible? Sick, boring me.  I can’t even go out to dinner anymore, much less make it to the theater.  Most days, a litany of symptoms exhausts me; I imagine just hearing about them drives most of you to drink at lunchtime (though some of you will secretly thank me for the excuse….and you know who you are!).

 Most importantly, though, I have learned that I had better listen when the likes of you people have taken the time to be so kind.

Day 5. Go Ahead, Murder Yourself.

Murder!

Join me in committing a murder.

I’m asking you to be accessory to a crime; I’m also asking you to commit your own murder(s), most likely plural.  Most likely we will be joyful afterwards.

The idea of having 5 days left to live is abstract.  As you know, I don’t intend to die on 11/13/12.  But having to confront the idea of dying from so many directions this year has brought me to consider it from an entirely different perspective, one that finally put me in a powerful position over the last several weeks.

What if someone, or more accurately something, does die, but (as is true with vegan dinners) nobody gets hurt in the process?

What if the 13th becomes is a deadline for murdering, or killing off, the parts of ourselves that are unhealthy, or that aren’t serving us well anymore. I don’t anticipate taking off limbs, or even eyelashes, yet in the process we will chip away minute parts of ourselves, parts that don’t weigh any more than an eyelash, small enough not to cause injury, but large enough to show slight differences in character in their absence. These distinctions, for example, would cause the new “me” or “you” to react entirely differently were a new doctor foolish enough to assign one of us an expiration date.

Think about it.  The idea of killing off yourself in this way becomes appealing, right?  I’ll start.  Then, I want you to jump on.

Here are ten pieces and parts of me that I will murder over the next five days.  Won’t you join me?

—  my rigidity, which might be termed my “my-way-or-the-highway”-ness as well as my obsessive nature.

— my difficulty with staying with any single task until it is complete.

—  my tendency to look up the truth on the internet during family discussions, unless that’s what we seem to want to do.

—  my tendency to accept the first assessment the doctor makes as THE WORD, or THE TRUTH (the replacement for this tendency might be a mixture of the above tendency, looking it up, with consulting second opinions when necessary).

— my tendency to obsess over unnecessary fine points, frequently to avoid dealing with the crucial.

— my propensity to want things I cannot have.

— my selfishness.

— my tendency to worry about everything. 

—my poor social skills (esp. at parties when I don’t know anyone).

 — my impostor complex.

 My list feels like the ultimate rough draft, as though it would take 100 or more list entries to approach the topic with any real seriousness.  But if I am truly to jettison, to murder, my obsessive nature, I must commit this murderous assignment, take its tenets seriously.

f about you?  Has this blog made you think about making changes year (or do you need to go back and start reading from Day 365 to understand what I’m talking about?  Don’t be intimidated by length; I wrote nowhere near 365 entries, or even nowhere near 100 entries).  What parts of yourself will you murder?  Why?  Let’s’ talk about it.

Day 13. Trick or Treat? I’ll Take the Treat, Thanks.

Everybody was decked out in orange and the black yesterday at the doctor’s office. Where else would I celebrate Halloween? 

My mom and I were hoping for a very simple re-acquaintance audience at the new Vascular Surgeon, Dr. Cameron Akbari’s, office at Washington Hospital Center. He is not getting a nickname because my instinct tells me he doesn’t need one, kind of like Dr. Francomano. Dr. Akbari is such a lucky find. Tonight I am trying to figure out how I feel about what happened, and if my legs didn’t feel like a hurricane is exploding the power lines of my nerves everyplace, I would be kicking myself.  Why didn’t I go to him for the last three years, instead of those blockheads at the Johns Hopkins University?

I actually met with Dr. Akbari three years ago because my primary care physician recommended it, since, if the worst happened and an aneurysm ruptured, my doctors at Johns Hopkins would be no good to me an hour away (and that’s with no traffic).  Little did I know at the time that they would be no good to me even before the worst ever happened!

Seeing Dr. Akbari again helped take the edge off my worries; his easy-going, kind presence breaks all the stereotypes about vicious, shark-like surgeons. It was particularly nice to see him when I didn’t urgently need him! But let’s not let denial take over: I was there at the behest of Dr. Dreamboat, the pulmonologist, who wanted someone to have a look at the results of my recent Brain MRI/MRA, which I spoke about in my last post. I explained to him that I had a Dissection in my Carotid Artery, a sort of aneurysm that isn’t as severe as the kind I have in my belly, or the one I had in my leg, yet worrisome nonetheless). I had sent the paperwork in to Fairfax Hospital and called ahead on October 8th to be sure that both the report and the disk with the images would be sent ahead of time to Dr. Akbari, so that he could make a considered diagnosis.

Well, for my first trick or treat of the day, I learned that stupid Fairfax Hospital didn’t send the images of the MRI exam I had while I was in the hospital. Trick. Upon learning I didn’t have the images, most doctors would have sent me home and said, “Come back when you’re prepared.”

STILL, I was capable of explaining the issue, right? I told him I had a dissection in my left Carotid artery, enough information, I suppose, to get the ball rolling.

Meanwhile, Dr. Akbari’s nurses called Fairfax Hospital and got the report. Treat. While we were waiting, he sent me for a sonogram of my carotid arteries, so he could have a more immediate view of the dissection. The double treat was that the result was negative.  Or does that make it positive?  The woman who did the ultrasonography was an M.D., super-competent, so it was one of those (unfortunately) rare times when I was able to feel very secure about the results, which indeed were beautiful.  Not a thing wrong.

“Still, there is one thing that could be wrong,” she explained, as I sat up wiping off the warm sonogram goo from my neck.  There is something so….I don’t know….degrading about those moments sitting up dripping with sonogram goo. It is a feeling, I suppose, unique to those who have had a sonogram of the head, neck, or heart. “The problem is that the Carotid Artery doesn’t just begin and end in the neck; it shoots up into the brain, so if they saw a dissection, it could still be in the brain, and if that is the case, I wouldn’t be able to see it with a sonogram.”  Oh….Trick.

Sure enough, after I returned to Dr. Akbari’s office, he was able to read the Brain MRI report from the hospital. While he was still smiling his dazzling smile, it had taken on a note of the “I’m speaking to an idiot” about it. So he says, slowly “You didn’t have a dissection in the Carotid, Heidi.” Trick. “This is a pseudoaneurysm in the brain. And the trouble is, my expertise ends at the shoulders. For the brain, I have to refer you to a neurosurgeon.

Trick. Trick. Trick. 

Tricks are for kids, aren’t they?  You know the ones I mean, the sweet little ones with the shaved heads who look cute on telethons?  I wouldn’t look cute after brain surgery, with a prickly, shaved, fat head and a moon face.  Good Lord.  This isn’t looking good at all.

 I said to myself, “I’ll take a treat, please, God.”  I don’t want to point out the dearth of treats in my life at the moment, people.  I hate to bitch.  I haven’t been writing about the blood thinner I inject into my fat stomach every morning now and the related side effects that are not pretty in any way at all.  In the way of the North American culture of the 1950s, since I have not had anything nice to say, I have not mentioned a word at all about the blood-related messes I undergo. Use your imagination. I feel like I have a daily visitation of the stigmata.

Here’s the story with the aneurysm.  Turns out that between October 21st, when I posted last on this blog and got it right (about my pseudo-aneurysm) and October 31st, when I went to see Dr. Akbari, I completely forgot my diagnosis. That is, it went from pseudo-aneurysm to dissection in 60 mph or less (this hyperlink has a list of definitions related to aneurysms; to read about pseudo-aneurysms and dissections, scroll down to page two in the file). Perhaps I am being hard on myself to expect to remember the difference. It is fairly esoteric. Yet, I find myself frustrated when I “lose” knowledge I had firmly a few days ago without any awareness of it.  That is particularly troubling because I used to grasp knowledge firmly and have confidence that I never would lose it; it never occurred to me that my brain would turn all hole-y and sieve-like before I even reached the age of 50!

Anyway, Dr. Akbari gave me the report, which did help me to understand, and when you read the following crystalline prose, you will understand why. This is the  radiologist’s description of the problem in my brain, along with some pictures that should help with the anatomy:

An MRA imaging of the Circle of Willis demonstrates patency of the intracranial Carotid Artery. There is a broad-based outpouching near the junction of the petrous and cavernous segments of the internal Carotid Artery on the right, protruding anteriorly, suggestive of a pseudo-aneurysm.  Mild fusiform dilation of the contralateral internal Carotid Artery is identified on this level as well.  There is also mild fairly fusiform dilation of the cavernous segment of the internal Carotid Artery on the right.

 So, to split hairs, I was right about the dilation — a mild dilation does exist on the right side, but it is only a minor problem as compared with the patency, or the sort of bubbling out, of the intracranial Carotid Artery and the internal Carotid Artery.  But the end of the report (this is always titled “Impressions”) summarizes the “vascular abnormalities,” and then, to conclude, points out “There is no stenosis.”  When I looked up stenosis, I learned how important that statement is: it means there is no plaque in the arteries, no fat in there (no prime rib, no bacon, no cheddar cheese, pork roast, or, most certainly, no turduckey). When that is present (particularly with the previously described vascular abnormalities), the potential for stroke is high. Good God!  That is all I need.

Good luck, meat eaters!

The plan now? I have to make an appointment with the neurosurgeon (after I finally get a copy of the MRI/MRA images).  However, Dr. Akbari wouldn’t let us leave without saying a few words, and when you read them, you will understand why he didn’t merit a nickname:

“You are not a walking time-bomb, Heidi. Listen, I do this all day, and many times a day I tell people, ‘Look this is a very serious condition, and you need to be extremely concerned.’ That’s not what I am saying to you. Believe me. I would say that if it were true.”  I was so grateful for that comfort! “Now,” he added, “that isn’t to say that you do not need medical care. It is important that you see the neurosurgeon to find out whether you need a procedure, or how he wants to handle it, but this is a small thing.”  

Treat. I think.

Frankly, I was glad to take down the Halloween wreath this morning and put away the Halloween socks.  I am hoping that this year’s tricks are behind me and that I’ll be living in Treat City until my birthday….and beyond.

How did you spend your Halloween?

Day 24. How Are You?

“So, how the hell are you, anyway, Heidi?”
“How have you been?”
“How do you feel?” (groan, eye roll from me.)

Time has been tick tick ticking away, friends.  My days depreciate.  I can feel drops of time drip past me, like silvery mercury flux, plopping, dripping medication from my IV bag.

According to the Ehlers Danlos Syndrome “genius” at Johns Hopkins, I have fewer than 3 weeks left to live.

I spend my days pretending I am not afraid.

My location has contributed to this mix of issues. Maybe you’ve wondered where have I been?

How are you?

I will tell you:  Little things bother me. For example, I am asked all the time: How are you?

You probably are as well, but I’ll bet the rent that your answer is in no way as complicated or as angst-wrought as mine, as exhausting. I am tired of talking about it. What can I say in response to the question?  I find myself stuck when someone asks.  Do you really want to know, or do you want the standard response, “Fine”?

If I tell the truth, I am complaining, even potentially worsening or lengthening my illness, since many people believe that talking about it perpetuates the sickness; if I don’t, I am furtive, suspicious, hiding something, not explaining my behavior…I am keeping it in, and thus deepening my own illness by not being willing to explore it. I feel as though I am in a stasis of damned-if-I-do-damned-if-I-don’t, though more accurately it’s dead-if’n-I-do, dead-if’n-I-don’t.

How am I? Well…..

Lungs Like Luftballoons

Sing with me: “99 Red Luftballoons….” If you don’t know the words in German, just click the link above (Lungs Like…) and hum along with the song.

You may remember that I have these pulmonary embolisms, the blood clots in my lungs.  So I finally went to get my lungs checked out by a pulmonologist, Dr. Dreamboat.  He turned out to be FANTASTIC.  It also turns out that PE’s (swanky medical slang for pulmonary emboli) are a genuine medical emergency. He put me in the hospital for a week (oy vey–there’s a whole post coming on that), horrified that the geniuses at Johns Hopkins would not have done that immediately (or directed my doctors here to do so) six weeks ago.  (Parenthetically, I should point out that my brother has checked me out and been not overly concerned.  He deals with pregnant women who frequently get PEs because their blood may have a tendency to clot more frequently than usual.  He said he can recognize when a person is “crashing” with PEs, meaning someone who is on a rapid course downward of shortness of breath.  However, he lives two hours away and is really busy.  Unfortunately, I am not rich enough–yet–to hire him as my personal 24-7-365 doctor.  But I’m just sayin’, he would not have allowed me to “crash.”)  Even so, I felt hoodwinked by Hopkins doctors; their negligence could have cost me my life.

Anyway, I am glad I did some research and found someone great here. Dr. Dreamboat is a Pulmonologist, a lung expert who deals with the intricacies of this disease, and by the time I got in to see him, I had begun to have some fairly consistent shortness of breath, which felt to me like my asthma had suddenly become quite serious.  What else could I compare it with?  I had no idea that might be serious. The fatigue, too, had become just overwhelming. “No wonder!” I kept saying, when he finally diagnosed me.

In the hospital, they performed numerous tests on me and put me on IV Heparin, a blood thinner, right away. Blood thinners are good because they dissolve those Luftballoon clots in one’s lung quickly. However, for someone like me, whose skin bruises and rips easily anyway, taking a blood thinner has the potential to be hazardous.  In my last posting, I described walking into my living room end table and the damage it did to my leg. It was a blood bath, and that was before the blood thinners.I can’t imagine that accident if it were to take place now. Not to mention, it took place five weeks ago, and the wound is not even close to healed. I don’t dare ask what happens if I were to need emergency surgery.  My brother has talked about emergency c-sections on women on blood thinners as harrowing experiences; basically, the patient may bleed out much more easily.  Yikes.

Because blood thinners have such dire consequences, my brother talked with Dr. Dreamboat for over an hour the first time, debating the properties of the various blood thinners.  He pointed out the another critical variable:  I react to drugs in bizarre ways. My drug allergy sheet is a page long, typed.  ONE PAGE.  So, the first one I got was that IV Heparin, pretty standard stuff for a hospital patient who needs anti-coagulants.  I didn’t complain, but as soon as I began taking the medication, my thinking became fuzzy.  All I did was sleep in the hospital. I mean, wake up, take a sip of water, and go back to sleep.  I didn’t call anyone or communicate much with my family.  How embarrassing, too, when my mom came and when two girlfriends came, I couldn’t keep my eyes open while I spoke.  I felt drugged.  This is how drugged I was:  My mom brought me my new iPhone so that I could set it up and play with it, but I could not keep myself awake long enough to sustain the thought process involved in doing it.

Washing Windows

Thank goodness they found another aneurysm — a pseudoaneurysm — on my carotid artery (the hyperlink on psuedoanuerysm is extremely helpful; alert readers might be interested to note that it is written by one of the world’s experts, if not THE expert, in vascular surgery for VEDS people.  I respectfully refer to him here as Dr. Mean, who bestowed the expiration date on me — thus Day 24 today.). Well [shiver], typically I wouldn’t be so joyful about having yet another aneurysm.  But my mom reminded me that I knew about this one; I find it described in one of my first MRI reports in 2008 as a having beaded appearance, as though I were wearing a string of pearls up the side of my neck.  But that finding was considered insignificant.  This time, apparently, it’s large enough to be noticed. Not a big deal, in comparison with blood clots on the lungs, and the aneurysms on the Superior Mesenteric Artery — just under the aorta — and the ones on the Renal Arteries, but just another in the long list of potentially fatal illnesses I seem to be collecting.)

When I read Dr. Mean’s definition of pseudoaneurysm (and its treatments), just now, the seriousness of it made me want to vomit into my shoes.  Times like those are the tiny minutes that remind me I really am going to die early, and all those people whose Uncle Bobby Joe who had VEDS and lived to be 72 didn’t have the kinds of aneurysms I do.  The reason I don’t encounter older people with lots of aneurysms is because there aren’t any.  Don’t worry, though.  It’s been a long, long time since I have thought about this.  And I have to let it go right away.  It’s like being a window-washer on a high-rise.  I have to remember not to look down.

So back to the blood thinner.  They took me off of the IV Heparin prontissimo once they saw that problem on the carotid.  If you have a rupture on the carotid artery, well you can read here about what happens (scroll down to the middle of the page, where it talks about the “Carotid Cavernous Fistula.” UGH.)  Now, thanks in part to my brother’s lengthy negotiations with Dr. Dreamboat, I have to administer shots of blood thinner into my stomach every morning…for six months. That sounds awful, but it is extremely mild, the mildest of the anticoagulant choices.  Still,  I feel mush-brained, just different from before. This sort of side-effect is not listed in the flyer (or on sites like rxlist.com).  As usual, my response is “special.”

Lovenox, the medication I take, is no prize. I won’t even get into the discussion about the asthma symptoms I get from it.  I just use the nebulizer and shut my trap. (I’ll say more about that another day.  This is entirely too long right now.)

Attitude of Gratitude, because Gratitude is Fatitude

All I can do now is focus on doing my best.  My best on most days thus far our of the hospital has been making my bed.  I get there on about 3 out of 5 days. Mostly, I am working on getting out of bed at all.

Will it surprise you to know that all these things combined are causing me to feel despondent? I’m just OVER complications, difficulties, wrinkles in the plans, and being cheerful about all of it:  “No, really, everything is fine.”  No it fucking isn’t.  It infuriates me. That has to be part of the reason I am not so chipper-dipper cheerful anymore, what do you bet?  Please those of you who are cheer-oriented, I do NOT require a suburban cheerup effort.  I am simply explaining that some days I want to holler, “Enough is enough, for crying out loud,” and  “I hate you!!” to this illness that opens its fierce mouth and swallows up whole days when I feel horrible, and whole nights when I pace the floor and cry.  It used to be that I could become a little upset, but then the voice of reason inside me would eventually bring me back to cheerful stasis. Maybe my problem is that I don’t hear the constructive echo of a resourceful voice inside me anymore.  I mean, damn.  How many curves in the road can a girl take??

Those curves in the road are dangerous whether or not I am driving:  they send me down perilous mental highways with signs that burn their images into my brain.

You will never own a house.

(whereas your friend x has already own five, and she is hardly middle-aged).

Failure!  You will NEVER have children.

You can’t remember anything! You look like a fool!

Lights will go out any moment.  Permanently.

With those I confess the true dark nights of my soul.

Luckily, the light does still come back on when the sky is blue and the leaves are on fire with red and orange.

So on days like today, when I bound out of bed with something that looks like energy, I feel true gratitude.  I’m honestly disappointed as shit that I am not coasting into my 48th birthday on a victory lap, with a load of finished paintings and more advanced artistic ability, and a completed book drafts. I can remember happy feelings about even the smallest of accomplishments, though, until I get back to the doctors (who, I probably don’t need to point out, are the ones charged with keeping me alive, but aren’t they also charged with making me feel better?).   I am afraid because of the seriousness of this last dance with the disease. I  know this has been a serious bout, because of the way this week’s many doctor appointments played out.  I visited the pain specialist on Wednesday, and when they took my history, the nurses got that quiet, sad-eyed “You’re in serious trouble” face that you NEVER want to see.  Then, when the doctor came in, he did the same thing.  That’s just a bit unsettling.

My main gratitude extends to my mom, who knows that the only cure for my kind of howling fantods of angst involves vegan, gluten-free pumpkin cake, cookies, and pumpkin cheesecake.  Food is love.  That’s how I’m holding up.  Gratitude is Fatitude.

* The doctors that I can find that are truly great are gems; I find them with a great deal of research or by recommendations from trusted doctors or other clinicians.  The ones I see are located in the D.C./Northern Virginia/Maryland Suburbs.  Please comment on this posting if you would like me to share the name of one of the great doctors I go to, like Dr. Dreamboat (he is, unfortunately, married).  

 

Day 63. Think About the Miracle of your Body

Think about how many times in the last month you have sliced, nicked, cut, burned, or grated one of your hands, fingers, feet, or even toes.  It’s easy to do.

You might become overzealous whilst humming Pavarotti as you are grating a nice, fresh mozzarella over the focaccia; before you know it you have grated your own fingertips into the mixture at the same time.

Just as easily, you could be watching a gripping film on the tele, completely unconscious to the fact that you have taken to gnawing the tension out on your cuticles, peeling the dry strips down the sides.  When you finally notice, you think, oh well, they needed it anyway.  I’ll be sure and apply hand lotion when I get a moment.

Perhaps you cut your toenails short sometimes, so they don’t poke holes in socks.  You have to chop them off straight across, taking away that icky “long fingernail” look that looks unappealing on the toenail.  A bit of the cuticle almost always comes off with a cut that shortens the nails down, but that shouldn’t matter a bit.

Chickenfeet015

“Toe-ing” the line

Yet, when you’re dealing with a chronic illness, a simple cut is never simple.  When you have a chronic illness, your body doesn’t always do what it should to fight off infection.  So that little, tiny cut is inroads to the body for all those invisible bugs that like to feast on humans.  For someone who can take antibiotic, the same cut–or one much, much bigger–would be no big whoop.

However, for those of us who are allergic to nearly any known antibiotic, the simplest little infection can be of grave concern.  A little infection in my finger last year caused me a four-day hospital stay and several weeks with a PICC line (a home IV line) so that I could take special IV antibiotics.

So, a month or so ago, I decided to correct the square toenail cut the pedicurist gave me by chopping off both corners.  When I did that, I somehow introduced a minute cut at the upper left corner of the toenail.  A couple of weeks went by and things were fine.  But suddenly, around the tiny nick became red:  this is where the average, intelligent person would introduce Neosporin or Bacitracin. While I like to think of myself as of average or above intelligence, the best I could do was a homeopathic treatment, Manuka Honey, called Wound Honey sometimes, that is supposed to have antibiotic properties. However, after ten days or so, the Manuka just seemed to make it worse, or else the infection was just going to get worse anyway.

I thought it was starting to feel funny from walking on the Band-Aid on Friday.  However, when I removed the cover, I realized the toe had swelled so much, the pad of it was suddenly quite large.  Not so good.  A quick consult with my brother confirmed my worst intuition: this wasn’t going to get better without help from a doctor.

Thus, I spent Saturday at the ER, having to convince the ebullient ER doctor/specialist that indeed I truly am allergic to all those medicines and that my toe might not look especially threatening, but I know to come to the hospital before it looks gangrenous or else I will be in the hospital for a long time.

Still….I overheard his conversation with Dr. Mycoplasma, my Infectious Disease doctor, who he was lucky enough to reach on a Saturday afternoon.  I heard Dr.  Stat’s minimization of my infection, and the half ironic/half questioning tone he used when he read off my list of allergies.

In part, it was a case of power politics:  I made the mistake of walking in trying to know as much as he did, and he didn’t like it. What business did I have doing that, he must have wondered.

Dr. Stat of the ER reminds me of the opthamological neurologist I saw last month. When he started to examine me, I wanted to warn him, so I put my hand up and said, “Wait, Dr. Looky-Heere, I have a small lesion in my right macula.”  He jumped away from me as though I had placed bedbugs into his ophthalmoscope.

“How do you know that!?” he shouted, at top voice.  “How do you know that!?”

“Someone saw it during an exam once and referred me to a specialist.  I made it my business to remember.  Wouldn’t you?”

His response was simply a rapid exhale of disgust, as though cataloging information about my own body would be a natural reason for his disapproval.

Here again, then, with Dr. Stat, I was dealing with someone who I appeared to have offended. I sat there thinking: My God, was it something I did? No, I realized after a while. It wasn’t what I did; it was what I knew. My best recourse, I decided then, was just to use what I know when I need it.  I had overheard Dr. Stat on the phone with Dr. Mycoplasma.

So when Dr. Stat finally returned to my little ER Cell, I denied him his “big man” announcement about my future.  “So, little lady.  It looks like you won’t need to be doing any time in the hospital…”

“I know! I heard! I can have one dose of IV Antibiotics here and then see Dr. Mycoplasma in his office on Monday.” I did my best not to emasculate the poor bastard, but instead to sound like it was a great, large mystery that I had happened to overhear his conversation with Dr. Mycoplasma.  “Speak no more!  It’s all great news.  Thanks so much!” I said. That way, I didn’t have to bother entering into the discussion with him about why I already knew all the answers to all the questions.

I was just happy to be able to go home and go to sleep.  Most importantly, I could give my party on Sunday.  It was the first literary Salon of the season.

To make a long story short, I got up on Sunday and although I didn’t feel very well, I got ready for my party, everyone came, and we were having a great time. Pretty soon, I stood up and asked if anyone needed something to drink. I turned around and didn’t notice that someone had moved the stool next to my chair and I turned around. Walking fast, I collided into the stool, making a loud splat.

Talk about a great way to end a party!  Thank goodness I have such wonderful friends.  Katherine became Flo Nightingale and bandaged me all up—no small feat, since the lower part of my leg already was bandaged with another, earlier injury.  When I was finally wrapped up, the bandage went from ankle to knee—as does the bruise now too. I look like I have on a black shit-kicker boot (made of bruise).  It hurts like hell, too.  On the positive side, though, it has been excellent practice for using positive visual imagery for helping with pain control, because pain killers have done a whole lot of nothing for it.

My wonderful friends also cleaned up the whole party.  (Don’t say what I know you’re thinking:  Hey, Heidi, you don’t have to work so hard to get people to clean up your party!)

Day 76. Narrative Medicine

TED (conference)

Re-blogs can be tiresome, I know, but this one is worth watching.  The doctor giving the TED talk is using Narrative Strategies as an approach to Internal medicine. Narrative Strategies, you will recall, I learned about this summer in the fantastic transformational workshop with Chené Swart .  This reminds me that Chené will be back in D.C. in the third week of October. If you are interested in a workshop, let me know soon so we can talk about the details.  She is popular, and it would be a shame to miss out on a rare chance to meet her while she is in the U.S.

Incidentally, this doctor reminds me quite a bit of Dr. Francomano in her style.  Nice.

Day 78. Wrinkles in Time

Time has had a tendency to wrinkle in on itself more than usual, lately.

That is the short version of my excuse for letting the weeds grow up around my blog for eight or more weeks. It also explains the wrinkle in the number of days. My reasons for taking so long to write again are legion; some are good and some not good at all. It got to the point where I skipped so many days, I could not stand to see the minuscule number I had left. What a relief it was, then, to discover a mathematics error tonight (a relief, but not a surprise). So, the sharp among you will note that time appears to have folded in upon itself and I have more days to live than it appeared….and yet it still is slipping horribly, frighteningly below one-hundred, and toward zero.

So, here I am writing again, like it or not. I haven’t written regularly for several months now for a hundred reasons. I’ll limit my excuses to four big ones here:

  1. Time slipping, slipping, slipping into the future.  When I last wrote, I returned to the blog after a long time to accept the nice blogging awards for which Michele Berger nominated me. Something about the difference between Day 121 (three digits) and Day 81 (two digits)—verged on paralyzing me. One main impetus for my starting this blog was to prove Dr. Mean, the surgeon who predicted I wouldn’t outlive my 48th birthday, wrong, to show him the diametric opposite, that I am living fantastically well. However, those numbers humbled me. Put yourself in my place, reader.  I know I am in the business of proving that idiot doctor wrong. But what if, just for a moment, he is right? Eighty-one days are not many; that isn’t even a quarter in the finance sector. I am allowed these occasional tidal waves of fear.
  2. Narrative Strategies Workshop. I was using what I learned in the workshop I wrote about (Day 121) helped me to decide that I’m not going to let being sick keep me down. So I won’t fall apart about this 81 day thing. Hell with that!  However, focusing on being a well person takes a lot of energy.  I have been really trying to do that.  I have a well mind, but I am frustrated that almost every day, my body is (so) sick.
  3. Mindfulness-Based Stress Reduction (MBSR) Meditation. I started a Mindfulness-Based Stress Reduction (MBSR) Meditation course, one that I found just as helpful as the Narrative Strategies course, though it took quite a different approach. I couldn’t understand why I was so incredibly busy.  Yet, it took my observant friend Ellen to point out how much time MBSR took. We attended a two-hour course weekly, plus read several (lengthy) textbook chapters and a handbook chapter every week; on top of that, we meditated for 30 mins to 1 hour daily. What might have been a relatively insignificant after-work investment of time for the average person for me involved every extra moment of my time, every day of the week. The ribbon of time looped in and tangled on itself. Sometimes I would find myself back at the beginning of what I had done, not having started in the least because I had not done it correctly at all (or had slept through the exercise, more often than not). Meditation is tricky like that. Still, it did—and does—help, not as much with my pain as with my stress about being ill.
  4. Suffocation by pillow, parts A & B.  

               A.    Suffocation by pillow: Pulmonary Emboli. It’s always emotional when I go to have my CT angiogram at John’s Hopkins University Medical Center, which is supposedly the mecca of treatment for people with Ehlers Danlos Center. This test examines and creates images of my arteries. It is important to keep in mind that one ruptured in my left leg once, and some “shifty” things remain there. But the issues of greatest concern are in my abdomen, an aneurysm in my superior mesenteric artery, as well as several on my renal arteries.  This is bad stuff.

When I went to see the doctor a few weeks ago, it felt like opposite day. Ordinarily, the ribbon of time for me is like a regular timeline, but on this day, it meandered like it was traveling on helium, divorced from gravity, and thus from the need to travel forward. Usually, I see the doctor, the Chief of Vascular Surgery, who is so busy I wait for hours to see her. By the time my appointment comes up, she is in a foul mood and if I have questions, she is unkind, belittles me, or tells me I should have asked the questions of my internist (when they are very specialized questions about my disease that are appropriate mainly for a specialist at one of the best hospitals in the world, supposedly, i.e., my internist—understandably—doesn’t know the answer, which is why I am seeing this doctor).

However, on the day in question, I had my scan, came upstairs to her office, and the doctor saw me immediately. I was stunned. I was even more stunned to find her in a good mood, so much so that I couldn’t remember to say any of the things I wanted or needed to.Since I had been called to her office so quickly, the CT angiogram of my body had not rendered yet. Time, as it had been doing that day, slipped off of its normal timeline. So, instead of what we did normally, she said “Let me show you last year’s scans instead.” Speaking very solicitously, she brought out the scans, mentioning that last year she  had only ordered a scan of my legs (meaning they had omitted my abdomen, where the most dangerous aneurysms are!). “Let’s look at your legs. See, you can see just these little clots. Nothing to be worried about at all.”

I saw dark spots there, none very large, but lots of them; I counted at least six before she took the image away. They were dark blotches, like irregular inkblots made by Sharpie markers, in the crotch where a  small artery, it appeared, had branched off. Nothing to worry about, she assured me, and from the tone of the meeting, I felt not just comforted but encouraged. Okay. We were being so positive; it never occurred to me to question why they didn’t scan my abdomen last year!I told her that I was so disappointed not to see the present day’s scan because I had set a goal that the aneurysms would be smaller, if not, the same size. She said I looked great, and that was such an admirable goal; she couldn’t wait to call to me to share in my good news. Then, seemingly attempting an informal girlfriend-y tone that seemed entirely inappropriate, she said things like, “So, what is up with you?” and “How have you been?” It was just out of character. Incidentally, she never even waited for my answers.

The doctor waited until the end of the week to call me with results. Actually, she called me back that very night with the results: The message was, “This is Dr. Deadbeat. I have your records. Please call me back.” Not good.  Had it been good news, she would have left a message.

I called her back many times until Friday afternoon, when she finally got back to me. “Emergencies” had kept her occupied. Coming from a medical family, I take a cynical view of such emergencies because I know that sometimes what constitutes them can mean running to the DMV, UPS, or talking to one’s sister on the phone.

However, she did call back finally and tell me, “I have good news and bad news.” If possible, time stopped doubly here. Why would a doctor say this? I wanted to rip her lungs out and just get to the negative first. “Just say it, just say it, just say it, just say it.” I didn’t speak these words aloud, of course. I said them in my head, hoping some part of her would hear them. Soon enough, she continued, her way.

“The good news is that none of the aneurysms grew. Now, the bad news….Heh-heh!…. Last year when we didn’t take pictures of your abdomen, we probably missed this … “ The first sentence took about 45 minutes, whereas the second sentence took all of five seconds. She went on, though. “We probably missed the pulmonary emboli in your lung. Those are small blood clots that have reached your lung and settled there. They’re probably nothing, but you will probably want to consult a pulmonologist, or see your primary care physician first. She can advise you about how you should proceed.”

I must admit, I was shocked and extremely disappointed. I believed that I had “thought” away my disease and disease processes. So now this diagnosis really trifled with my new narrative of being a well person. And here’s another new disease that could kill me.  could easily be the thing that kills me.  I am humbled. Again.

I am also furious at this doctor. So much of what she did was shady.  She should have alerted me immediately about the clots in my legs. Those could have been treated. The syndrome is that bloodclots in the leg mean a DVT (Deep Venous Thrombosis), particularly for someone like me). Part of that syndrome is that the clots can come loose and lodge in the arteries of the lung and cause all kinds of trouble if they cut off blood supply. That’s called a Pulmonary Embolism.  I got two of those.  So if she had been on top of things, I would not have had two of those.

It makes me wonder about how “nice” she was being; I wonder whether in fact she did see the images and wanted to chat me up just to make me feel like she was her gal pal? Her behavior was so strange that that is the only explanation I can decipher. Someone of her stature has no excuse for overlooking that. People wait for months or years to get to see the doctors at what some people call one of the finest hospitals in the world.  I wonder what kind of care they are getting at just an average hospital.

I know that I have routinely gotten better care at Washington Hospital Center in D.C., at Greater Baltimore Medical Center, and at Virginia Hospital Center.

Anyway, no wonder I have been feeling like I’m being suffocated by a pillow.

  1. 4. Qi Gong & Lungs. Eve Soldinger, my Qi Gong Practitioner diagnosed this weeks before the CT Angiogram.  Several times, she asked me what was wrong with my lung as she stood on my right. “Lungs?” I asked. “That has to be asthma.  Now and again I am short of breath and I have to use a rescue inhaler.  If it gets out of control, I have to use a nebulizer, rarely. “No, that isn’t it,” she said.  That’s how good she is.  These remain small and for the most part asymptomatic (just every 20th breath—when I breathe very deeply—I feel like I have water in my lung, and have for a while).

So what does this all mean??  I don’t know.  I am moving much more slowly (than what? Than 40 days ago) and I am frustrated.  But (on the positive side) I have been writing some short stories, and it may just be that I haven’t had the energy until Carlos & Bob came back to town.  Yes, that probably is it indeed!