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?

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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!

Day 193. A Zero Day, Skipping Stones

This will be a short one, skipping topics like skipping stones across the surface of a pond.  It’s about yesterday and what it did to my body, about what I did for an art project, and what I need to do for homework.

Yesterday I had a to-do list of seven items.  I accomplished an amazing one-seventh of them when the Comcast man came and went.  As for the rest, well, I scratched through them in red pen: incomplete.

Here is why:  when I awoke, I wasn’t sure about how I felt.  In an iffy situation like that, I try to put makeup on and dress as though I am about to go somewhere, so that I will create a sense of momentum (and sometimes propel myself out of a funk).  I didn’t realize until after the Comcast guy had left that I had applied the eyebrow pencil a trifle dark.

Old Lady Eyebrows

People, this makeup mistake is a definitive crazy old lady marker.  There is no pussyfooting around it.  I looked in the mirror and laughed at myself.

Trouble was, I just felt all wrong.  My body was on fire.  To give a simple example, I wear soft, fleecy socks all the time around the house because they are warm and protect my feet, from which the fat pads the rest of you have, have disappeared (making walking on them feel…well, like walking on sharp bones).  Yesterday, though, the little nubbies on my regular soft socks felt like they were razors across my toes.  I kept telling myself to ignore it.  You know, like, “Hey, stupid.  You have too much time on your hands.  If you were driving railroad spikes someplace, your stupid foot pain would not come to mind.”  Trouble was, this stupid food pain was starting to feel like railroad spikes driven into my toes.  Finally, I had to dig through the various pairs I have to find the very newest and softest pair of soft socks on which the little nubs are still perfectly squishy.  That was only one part of my body that felt like it was being poked, prodded or twisted.  There were the ankles, the wrists, the knees, the hips….WTF?  I thought this was all going to resolve itself once the PT was over!

Since I was no good for the concentration involved in doing the kind of writing I am doing now, I found some Zentangles to work on.  I posted one last time; I worked on the one here most of the day yesterday, until my hands hurt so much I had to stop, and then I slept for a while.  Then I started again.  They are fun to do when I need to stay in bed because no paints are required, just a pencil, eraser, pen, and a ruler.

I tried meditating before working on my art, just as I am making sure to meditate before I write each time, so that I stay on task and feel the work flow out of me.  I’ve been trying to work on doing that, as something I have been discussing with my therapist.

My therapist, Dr. A., who specializes in working with people to deal with chronic pain and grave illness (rather than “how do you feel about your parents” kind of stuff) does cool things like help with meditation and things like that.

This week, though, he has me stumped.  He gave me an assignment to think about what I need to work on, in therapy. To him, that means what I need to improve, discuss, or problem solve as it relates to dealing with my illness or the situations around it.

I am drawing a complete blank.

It isn’t that I feel cured or resolved by any means.  I just feel a great blank when I try to think of the answer, because I often draw a great  blank when I try to think deeply. Now, I need to come up with something by Monday. Help a sistah out. What do you guys think?  I  thought it would be cool for my brilliant readers to opine (since I am so blind to my own situation).  This means you!

Have you been given similar therapeutic assignments? How has it worked for you? What am I missing?

Day 246. Weighing the Pain Scale.

One of my favorite bloggers, an amazing college student, writes Simple and Well, a blog about her experience with Hypermobility Ehlers Danlos Syndrome.  It differs from the type I have (Vascular); each of the types shares the main symptoms with the others, the identifiable ones being hypermobility, skin fragility, joint pain, etc.  My symptoms of hypermobility appear on a small scale (causing joint pain), while the activities of daily living cause this blogger’s joints to sublux, or to come out of their sockets.  Rolling over in bed, for example, may cause her hip to come completely out of its socket.  Her shoulder, she writes, has the tendency to “pop,” as do her ankles.

So what does she do?  She tapes up her loose joints for support and goes swimming to get a good workout.  That is one tough young woman.  She is my current hero.

Mosby Pain Scale

Last week, she wrote her own version of a pain scale.  If you haven’t spent much time in the hospital of late, you may not be familiar with the Mosby Pain Rating Scale that incorporates the McCaffrey 1-10 scale numerical reference with words along with the Wong faces scale (image right). I’m particularly fond of the faces of misery that accompany the numerical scores for those of us for whom numbers are particularly meaningless.

The pain scale is a good idea as an attempt to quantify and measure pain empirically, when viewed from the perspective of the nurse, doctor, or pharmacist.  One must measure the pain to treat it. However, from the perspective of a patient, those faces of misery seem laughable. How can they possibly measure pain, an entity that is unquantifiable and incomparable from person to person.

I’ve often thought about this when I have confronted those infernal frowning faces in the hospital or the doctors’ office. How does mundanity of my daily #4, “Hurts a little more,” or on the McCaffery Scale “Moderate,” have any mathematical, or for that matter existential association with the things-are-getting-worse-ness of a #6, “Hurts even more” or on McCaffery still “Moderate.” In fact, I’m still “Moderate” until I am a #7 on McCaffery, which is a long time before a medication decision might be made.  But by the time I am a #7, it may be too late to take a moderate dose of medicine because it is important to treat pain before it becomes too serious; otherwise, it is very difficult to manage.

The rating system becomes more complex because sometimes my leg (where I had an aneurysm rupture) may feel like that face above the #6 “Hurts Even More,” but the rest of my body is pretty okay.  I can manage having that pain better than some other days.  Thus, I can manage taking less pain medication than I would take on a day when I was feeling a #6 AND every joint in my body hurt on top of it.  I wish there was a #6+ or a #6J-with feeling.  That, to me, would have some real empirical value.

Still, I was pretty sure learned from my venture into pain research that I am a big, fat baby. If I were to follow my favorite blogger’s pain scale, I believed that the numerical scores I would assign myself daily would be dramatically lower.  I quite frankly assign pain scores the way America assigns grades on English papers: in a ridiculously inflated fashion.

I have spent the last week or so wondering what that inflation says about me. Do I misunderstand the pain scale? Am I malingering for attention? Love from doctors?  More pain pills? I worry about these things constantly.  I am a baby, no question.  If I just powered through this, I would have less pain.

So then I had a epidural injection on Friday. I absolutely detest getting them, as I guess anyone would hate having a needle poked into a vertebra and into the nerve.  So the doctor uses an X-ray machine to find the nerve precisely; then he injects me with enough local anesthetic so that I don’t jump off the table.  Then, he stimulates that nerve to make sure he has the one that is causing the leg pain—so I feel not exactly pain, but just sensation all the way down my leg and even in the foot where it hurts.  Then, he injects tons of anesthetic, followed by cortisone (which will hopefully block the pain for a few months, until he does it again).

The payoff for the misery of having the injection is standing up and walking off of the operating room table:  about an hour of pain-free walking around.  It hurts like hell in my lower lumbar, where he poked me, but I don’t care.  My leg doesn’t hurt for the first time I can remember.

My doctor’s office building is in Bethesda, kind of a tony address; right across the hall from his office is the snack bar, where one can find the expected coffee and candy bars.  However, the reason we drive 45 minutes to Bethesda instead of seeing the doctor five minutes away in his D.C. office is that the Bethesda snack bar also sells Swarovski crystal barettes and hair things, as well as designer knockoff purses (not that I would ever buy one of those).  So I have about a half hour to walk around this store without having to figure out a way to stand on one leg, or lift it up bent and rest it on the other.  The important thing is, I never even think of my leg this whole time, not how my shoe feels, or whether my sock is cutting into me, how long I have until the pain pill, not one thing. When this happened, I realized that I am not exaggerating when I say that the pain never goes below a #4, even with three narcotics.  When I had a complete nerve block with anesthesia, on an otherwise pretty good day, well now, those pain faces smiled for quite some time.

“Loosey Goosey,” the blogger of Simple and Well, tells me that someone has gone to some trouble to write a better, more sensible comparative pain scale.  This one has some good points; however, I think it is skewed to the lower side.  According to this scale, #5 is pretty intolerable (like trying to walk on a sprained ankle). Uuummm…okay.    Call me inflated all day long, but that just has a lot more seven-ness than five-ness, for me, folks.  Some of the distinctions made to explain the pain, though, are so clear and so apt.  For example at #6, it becomes difficult to hold a job.  Yes!  So clearly it does.

Without a doubt, if the aim is to standardize the description or definition of pain, then more work remains to be done on standardizing the pain scale.  Being able to describe or define your pain may seem esoteric to you, but if you’re in the hospital, in pain, you may find yourself at the mercy of healthcare givers who are suspicious of your motives.  One thing to keep in mind (I learned this thanks to Cathy, who sent me a very interesting journal article): beginning in March 2012, hospitals will receive large amounts of Medicare and Medicaid funding based on the patient evaluation scores they get on pain control.  That means that the government is requiring hospitals to do a good job at controlling your pain in the hospital.  I’m not even on Medicare, and I’ve been surveyed many times already.  So, whether you use the happy and sad faces, or whatever numerical score you devise for yourself, keep in mind, rating your pain may be vital to you in the future.

Day 347. Pretty in PEMF

So my mom and Nathan watch the local FOX station evening news, and I happen to admit that because they called me the other night to say that Dr. Oz had been on to promote the next day’s show.  The topic was to be a patient-controlled device that seems to be quite successful in treating a number of health concerns, but particularly chronic pain such as headache, backache, and nerve pain.  Yes, please.

So, that was one Dr. Oz episode I TIVOed.  I was so excited about the topic that as I watched the show, I did more internet research than pay attention to the commentators.  Do you ever do that, and wake up from your internet dream only to discover that the whole show is over?  If you have a DVR, you can rewind it, but the time you set aside to watch it has passed and there you were, foiled by the time suck on your lap.

Well.  So, I learned that PEMF, or Pulsed Electromagnetic Field Therapy, has actually been around since the 70s, and received its FDA approval in 1979.  (To be clear, this has nothing to do with the ordinary refrigerator type of magnets sold fallaciously as headache and arthritis cures; it’s a different type of magnet.)  The device is frequently used in the field of orthopedics for things like broken bones that won’t knit and arthritic pain.  Also some rheumatologists and physiatrists (pain doctors) are experienced in treating soft-tissue wounds as well as suppressing inflammatory responses at the cell membrane level to alleviate pain and increasing range of motion.

The device(s) (by various makers) seem to have been studied extensively over thirty-odd years — although I did note among the 40 and 50 abstracts I read that none seems to have investigated in a large study group of beyond, say, 50 subjects.  But studies seem to prove in small groups that PEMF Therapy can treat acute pain dramatically well, and chronic pain as well, but somewhat slower.  This has been my experience so far exactly.

Here’s what it looks like:

These machines have one major disadvantage, and that is cost: at present, insurance doesn’t cover treatment, so there’s no $25 copay/visit, and even if there were, at the very least one should be treated three times weekly.  Ideally one would be treated twice daily.  At $25 a pop for copay, the cost would immediately be out of most of our reach (and who pays a $25 copay anymore?).  If there is any good news, it is that some of the machines are now made for home use. Thus, rather than costing $25,000, they cost between $3000 and $5000, which still puts them outside of most of our reach. We can gather, though, if the insurance won’t cover a copay, they certainly won’t cover the purchase price of the machine.

One company, iMRS, figured out a way to let desperate people try the machines.  They rent a brand-new machine for $500/month (with a refundable $1000 deposit on the credit card).  We can rent as long as we like, and if we decide to keep it, all the rent (and deposit) will go toward the purchase price (which is close to $4000).  The cost is still outrageous, but for someone who is desperate (and potentially has only 347 days left on the planet), all money starts to look like the gold-colored five hundreds in Monopoly:  imaginary.

That last argument not holding any water, my Mom and Nathan helped me rent it for a month.  Let’s see how it goes.

Here are a couple of other parts of the machine:

So far, it hasn’t afforded the miracle cure I’ve been hoping for.  I would say, though, that it is fairly miraculous on acute pain, like the headache I wake up with three times weekly that I mention in the probe video, a feeling like someone is cracking open the bridge of my nose and then chopping it up in pieces.  If I run the probe over the offending areas for the prescribed 16 minutes, the headache will be gone afterwards (rather than taking a day, or more, of extra narcotics to try to treat it).   Similarly, it can help sometimes with arthritic pain that pops up as well.

Karma is sweet, though.  Nathan has had a shoulder injury for many years from parachuting from a plane.  He’s a tough guy and doesn’t take any painkillers or complain, but he says he hasn’t slept well for as long as he can remember, and putting on coats and things have been impeded from his range of motion.  I put Nathan on for one eight-minute treatment for chronic pain.  He didn’t feel much different immediately afterwards–and he was pretty skeptical about the device. However, he called me the next day to say that he slept better the night before than he had in as long as he could remember.  And even more compelling was that he had just about 100% range of motion back, which he hasn’t had in lo these many years–since a few years after the injury.  It couldn’t happen to a nicer guy, frankly.  He deserves it!  (He’s coming back for regular treatments now, to make sure the treatment “sticks.”)

Now, here is the controller:

There are so many settings–and I have just as many ailments–I have had some trouble choosing the proper setting to use.  My brother suggested choosing the most painful thing for me, the neuropathy, and empirically pursuing that for the next month. That sounded reasonable, so that is what I mainly do, for 1-2 hours daily (except when I need to treat acute pain). I’ll let you know what I find out.

Any lower back sufferers out there?  $20 a pop; meet me in my guest room!  (By appointment only)

Day 351. Paint Your Pain

Heidi's Pain

It’s not arts-and-crafts day at the loonie bin.  Rather, Dr. A. Suggested that I paint my pain.  (That sounds a bit like self-contradiction, but just never mind).  He mentioned it before, but I could only conceive of it in abstract terms:  how will I draw pain?  What does my pain, the thing, look like?  I have no idea.

Finally, he showed me a drawing someone else had made for him in his office.  It was terribly disturbing, a person’s body with pain on it, and the dreadful, sad colors that one would expect with pain.  I finally understood (a little dense, I am, since the aneurysm).  The painting could be of me in pain.

I went home and tried to write what I saw in my head:

With closed eyes, I see
     zig-zag lines of electricity
       over my body from above
I’m on my knees, facing
     downward, with my arm back,
like a Thanksgiving turkey,
     with emaciated drumsticks
     and wings that swell up 
              and turn bright red
                   to the horror of the guests

Knowing this of me, you probably are thinking it is better I missed Thanksgiving dinner at Melanie’s.

Well, so then I painted my crazy picture, which is remarkable for a few reasons:  first, it’s a second draft, meaning that before you laugh at it, consider that the first was the really juvenile one!  Second, as I look at it with a few days’ distance, I wonder why I chose those colors.  It seems like I should have chosen dismal, disturbing colors, not bright cheerful colors, as though to say, Hi, peeps, isn’t pain just swell?  Third, if I were to include text, wouldn’t it make sense to write the words large enough to read (it’s easier to see them if you click on the picture and see it in a larger size); safe to say, though, that this is not a piece that reflects the artiste in me.

Still, it was a cool assignment.  Dr. A (as in Dr. Philip Appel) is a killer, amazing psychologist at the National Rehabilitation Hospital, who specializes in patients who are managing chronic pain brought about by chronic illness or disability.  He is so good that you almost should get a chronic illness just so that you can go see him.

Anyway, Dr. A. mentioned that at least part of the strength in painting one’s pain is that it allows us to experience the pain as something outside our body, a step towards stepping outside of the pain.  I like that possibility very much.

I wonder if this means I should take the painting, shred it in little pieces, and burn them in effigy tonight…

Day 358. Thanks, Dr. Katzow.

Well, it’s all over.

My psychiatrist divorced me the other day.  Dr. Katzow is the smartest, most insightful doctor, a terrible loss.  I had heard that he wasn’t feeling as well as he used to, so I might have foreseen this terrible day coming.  The thing is, he looks so good that I found denial an easy state to rest in. How ironic, in fact, that I would make the very mistake that bothers me so much when others make it about me!  When I hear someone say, “Oh Heidi, you don’t look sick; you couldn’t possibly feel bad,” it irks me something fierce.  I did the same thing to Dr. K., clearly a life lesson, that it isn’t that people don’t believe me as much as people don’t want me to be sick.

I saw Dr. Katzow for at least seven years that I can remember (that’s as far back as iCal goes), certainly through the worst of my health problems.  My allergist referred me to him because Dr. K is well-known as a specialist in treating mood disorders. All he does is psychopharmacology (and some intense therapy with “extremely involved” patients, as he termed them). However, my saying “all he does” makes it sound as though psychopharmacology is simple.  It isn’t.  It is endlessly complex.

Dr. K. has the most fantastic office on Washington Circle, in Washington, D.C., right across the circle from The George Washington University Hospital, to put it into perspective. His office is one of several medical practices in an otherwise residential building, so it has some unique characteristics, the coolest of which is a fireplace in Dr. K.’s office.

The office’s unique character reflects the doctor’s remarkable personality: Dr. K. has always seemed to me like an intellectual apothecary, with a mortar and pestle, grinding up precise doses and mixtures of drugs in a back room someplace in his office.  Of course, he doesn’t really mix up doses in the back office, but he knows every medication and its characteristics like it is a close family member. Thus, he can adjust doses so precisely that he can treat someone who is depressed, yet fiercely unable to sleep and somehow manically nasty.  He gives just enough medicine to raise the depressed mood and at the same time calm those manic, dysphoric feelings. He knows how a mood disorder whacks a person out. I am told. Not that I know anything about this. Other doctors, again, I am told, can’t figure out something so complex.  They hand out the Wellbutrin or the Prozac and send you on your way.

Dr. K. really does manage doses like an apothecary. For treating a complex situation, he sometimes is so precise that he instructs one to open up a capsule and dump out a quarter of the contents of the lowest available dose. The result of such tinkering is one’s genuine stability, as much as the extenuating circumstances of life allow.  He is similarly precise with his analytical skills. I have always been able to tell that he knows better than I do how well I am doing, and there is something unbelievably comforting in that, far better than medicine.

The real service Dr. K. has offered me, though, has been regular support and advice about the medical odyssey I am navigating.  More often than not I have come in and cried, telling him about the newest doctor who has misunderstood me, or the way the pain simply will not go away and that no one would believe me.  For quite some time, we explored  the possibility that anxiety and depression can cause chronic pain, for no reason anyone can explain.  In fact, I had finally decided that he was right (just before the aneurysm); he was the only doctor who presented that idea while still encouraging me to find out what was wrong with me because he didn’t think that there was any reason having pain from depression meant that I didn’t have some other disease. He probably is right. However, it is impossible now to decide whether the depression came first, or the pain and agony from headaches and neuropathy.

Just recently, while I was working on a chapter of my book called “Chasing a Diagnosis,” I tried to calculate the number of doctors I had to see before I finally got my diagnosis of VEDS.  I have seen doctors in 20 different specialties, and within those specialties, I have sometimes seen two or three different doctors each. That means, conservatively speaking, I have seen between 30 and 40 doctors during the time I have been Dr. K.’s patient.

He sometimes strongly supported my decision to stop seeing a certain doctor (and many of us know how psychiatrists are frustratingly opinion-less on nearly everything).  Other times, he would give me ideas of questions to ask, or medications I should ask the doctors to consider.  He was a fantastic consultant, and he led me down many of the right roads.

For this reason, he felt more like a family member than a doctor.  For this reason, he is not replaceable.

How am I to call my insurance company and ask for a mood disorder specialist/apothecary/expert in all the body systems/health care consultant/member of my family/and genuinely kind, avuncular man who I genuinely adore?

When Dr. Katzow stops practicing, there won’t be another like him.