Day 167. Enjoy the Silence

Enjoy the Silence.

enjoy the silence

enjoy the silence (Photo credit: cambiodefractal)

Forgive me if I haven’t responded to your email or I have owed you a phone call since forever.  I am in one of those moods that I always promise not to get into.  Please indulge me.

It’s been a while since everything hasn’t hurt. I’ve tried taking all the meds on the dot, round the clock, as prescribed, but they don’t work.  I’ve tried skipping them.  That REALLY doesn’t work.  In neither case can I think enough to paint or write.  Thinking doesn’t seem possible either, but every once in a while, the realization that I’m so much worse than last year this time bubbles up and things feel grim, grim, grim.

My wonderful geneticist has prescribed me a compounded pain cream made by a specialty pharmacy that contains muscle relaxers and all kinds of good things. It’s on an automatic mailorder renew; I expected a new one on 5/4, and when I didn’t get one, I thought maybe the prescription ran out.  No problem, I thought.  That was the day of my appointment with Dr. Francomano.  Her office would fax a new order.  When I didn’t have a new order of my pain cream by the middle of the month, I called the pharmacy and asked for their help.  Oh?  That should have come at the beginning of the month.  Let us overnight it.  Guess what?  That never showed up.  When I called on Wednesday, they said to wait one more day….that never came.  So they overnighted it again.  When I came home this afternoon and didn’t find it, I just cried. This stuff makes a huge difference in my life. I was considering jumping off my (2nd floor) balcony…and it’s a good thing that a miracle happened….someone had opened my locked door and put the package inside my apartment.  I’m assuming it was one of the dear maintenance people who work in my building. What a relief (some good things!).  That my be the only reason I’m writing tonight.  But I’m still not in great shape.

Yet I am investing so much time and money on what feel like scads of alternative strategies, all of which are so encouraging and gratifying in the moment….but what good have they done me in the long run?

I’m not saying this for anyone to feel sorry, to call me, to send me a note…please, these just feel like overload in this state of mind.  I’m just explaining what things look like inside my head, while I–supposedly–have only 167 days left to live.

Some progress, I think:  I’m going to a new pain doc next Thursday.  That feels like I’m getting ready to go on a blind date, and I don’t know Braille.

I have long ago sworn off blind dates because they never go well.  I don’t like people, and I am so convinced they won’t like me, I’ll create a disaster, even if it wasn’t meant to be.

The Hospital Pain Center assigns the doctor based on one’s disorder; more likely it is the doctor who has the fewest patients.  The one I was assigned was the one I was most hoping I would not be, based on the bios I read.  His specialty is sports medicine.  OY.  That can’t be good.

I have little faith that much good can come from such an appointment….except what else do I have, right?

Now, I apologize for a negative entry.  I won’t do this often.  But sometimes this kind of situation happens in a sick person’s life, and it wouldn’t be fair not to show only the happy days, right?

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Day 178. Dr. Francomano, Wonder Geneticist

A visit with Dr. Francomano is like being loved very much by one of your most cherished relatives for an afternoon. Really.

I look forward to it fiercely, and while I’m there, I smile the whole time and pat her frequently, and always, always hug her.  She is just so good to me.  I realize why I am so needy:  I spent ten years being blown off as a malingerer. Finding someone who didn’t discount my claims felt so good, I couldn’t stop hugging her.  She must think I’m an affection-starved goof, when in fact I just can’t figure out how to appreciate her enough.

I ran right home and wrote myself a list of all the reasons why I love her. Dr. Francomano is a unique sort of doctor, meaning that not every general practitioner has the time or ability to stop and talk with patients the way she does. The kind of investigation and analysis she does (and the difficult cases she has) requires time we are no longer accustomed to in U.S. Medical care, meaning that she must do careful diagnosis and talk with the patient at length.  She:

  • Listens to my digressions.
  • Discourages invasive tests and surgeries that will just make me sicker.
  • Supports my trying alternative treatments like the 10 min daily tanning booth treatment (with 100 mg. Niacin, 1000 mg magnesium, and 1500 mg calcium supplements) and Medical Qigong weekly.  Also supports use of compounded supplement drinks like green smoothies.
  • Suggested that I take a class on Mindfulness Based Stress-Reduction (alá John Kabat-Zinn, Full Catastrophe Living a book I’ve been not reading since before my aneurysm!).  I think a class is what I need just this minute.  Turns out there’s an online one I can take in a few weeks by the miracle of microphones and computer movie cameras.  Sweet.
  • Agreed to have my testosterone tested.  My medical consultant wants me to have compounded testosterone cream made to rub on my wrists.  The result is increased energy.  Dr. Francomano says that as long as my testosterone level is low, she will agree, but if it is not low, too much can weaken blood vessels.  Yikes.
  • Makes sure I get a refill of the pain rub that comes from the compounding pharmacy.  I don’t think she invented it, but she introduced me to it.  It’s a mixture of a group of prescription and nonprescription medicines by a compounding pharmacy.  It requires a prescription by your doctor.  An outstanding pharmacy I recommend is Russellville Pharmacy in Russellville, AL (888-705-4990).  The contents of the pain rub are the following:  Diclofenac, baclofen, cyclobenzaprine, gabapentin, lidocaine, and magnesium.  These are a mixture of muscle relaxers, nerve-pain meds, and topical anesthetics.  Because you don’t take them by mouth, they don’t put you to sleep, and because you put them right where they are needed, they REALLY do the trick.  I am not kidding when I say that it is the very best thing ever for nerve, muscle, and joint pain.  What else is there?  The only thing I don’t like about Dr. F. Is that she won’t raise the dose and let me take a bath in it. 🙂

Dr. Francomano is genuinely interested in the cockamamie symptoms that can drive me bananas, ones that cause everyone else in the world (even one’s mother, some days) to roll eyes.  She has heard of everything, like the cracks in the skin of my fingertips, a phenomenon that sounds mild, but which becomes excruciating, because the abrasions are deep.  Even though they’re little cuts, they are forever exacerbated by salt, dirt, and stretched in various directions.  One of the cuts on my right index finger has been there for four months at least.  I know it, because it has been there since my last visit to Dr. Francomano.  I meant to ask her about it in January and forgot; there was so much to talk about, and it seemed so insignificant I left it out.  This time…there was time.  And, amazingly, she had some suggestions about what to do (she suggested that I work with my Medical Qigong practitioner, and take the supplements of my choice, with the goal of improving circulation to the extremities).  Fair enough.

Baoding Balls / Qi Gong-Kugeln

Baoding Balls / Qi Gong-Kugeln (Photo credit: Wikipedia)

I don’t do Dr. Francomano justice in this disjointed (no pun intended) entry.  I have had a migraine all day.  In fact, I had enrolled (already) in a Mindfulness meditation class tonight, but I canceled because of my Migraine.There was no way I could have participated in a class (as well as driven to and from)—I realized after I had enrolled.  What was I thinking, in fact?  I’m going to take an online one instead.  Gathering my thoughts is not an option.  I can’t even locate them in my scrambled brain, so I apologize if my writing is rambling, rather than something of a narrative.

I promise  I’ll make more sense this week.  I have lots to talk about….I may even post a picture of my progress on my suntan.  It’s looking mighty, mighty good.

Day 180. All About Eve 2 — Converting to Medical Qi Gong

On the morning of my second visit to Eve Soldinger, my Medical Qi Gong practitioner/miracle-worker, I knew my mission from the moment my eyelids slid open.  It propelled me to arrive in Dupont Circle twenty minutes early.  There is no question that I can get out of bed and move quickly when I am motivated by something so powerful, so good, so so….delicious as a bakery that makes Gluten-Free, Vegan pastries.

Yum-yum gimme some.

At the end of our first visit, Eve and I had spoken some about the vegan diet we had in common.  I told her that it was tricky to find foods that were as highly specialized as my dietary restrictions required.  She mentioned that she thought a local bakery made Gluten-free and Vegan treats.  “Both?” I asked her.  She wasn’t sure, but she thought so.  She told me it was just around the corner.

That was all I needed to hear.  In fact, all week long I fantasized about potential creamy, flaky, pastries that I inhale in clouds of powdered sugar the way addicts inhale….well creamy, flaky pastries.  You must understand that for one who never gets to eat such delicacies, the urges can become reasonably faint; but when the potential to eat the foods seems imminent, fantasies can overcome.

To walk my triangle start near the M in St. Mathews. Go up Conn. Ave (not labeled; walk toward the circle).  Form the bottom of the triangle on Mass ave, and come back around on 18th St.

So I got out of my car and walked around the block from 18th Street to Connecticut Avenue; it’s one of those funky little diagonal blocks that occurs nearing a traffic circle, the likes of which we have all over the District of Columbia.  The folklore about their origins is that Pierre L’Enfant, the architect of the city, was a big drunk who frequently rested his drink on the city plans; wherever he rested his drink landed a circle.  But I digress.  (See the map.)

It was not hard for me to walk around the acute angle of the block and up the Connecticut Avenue side.  I was like a dog with his tongue hanging out, “Duh, where’s the bakery, where’s the bakery?”  Well, there was no bakery.

The sun was exquisite, the wind cool, and the sky the most perfect azure, a rare perfect day in Washington.  It could not have been a better day to walk.  Not only that, but I love that neighborhood.  My Dad & Stepmother used to live down there when I was in high school, and I have so many happy memories of walking around; it used to be incredibly hip.  Now it’s still pretty, cool store fronts.  So I kept walking.

“Duh, where’s the bakery, where’s the bakery?”

No bakery.  So I ended up walking all the way around the block.  Way, way, way too far for me.  I’m about a five-minute-r.  This was fifteen minutes.  When I came upon Eve’s building, I was relieved, excited, and in tears, all at once.

The best comparison is always the base:  we all measure up to the most common denominator, or she-nominator.  You know how you can have to pee something fierce, but somehow you manage to keep a cork in your vast keg as you ride or drive up to your building.  No matter how bad it is, it is manageable until you get to your front door.  Then, suddenly, there is no more cork.  It’s just your finger and that hole, and good luck keeping the enormous keg plugged until it matters.

Stop shaking your head in disapproval (you know who you are!).  You know exactly what I am talking about.

Well, this was precisely my misery when I stumbled up to Eve’s building— only my bladder was fine.  I just rather fell apart pain-wise.  I had had to keep it together walking around that vast triangle of a block, because once I had started the walk toward gustatory paradise, it was too far to turn back.  Then, to have begun to concentrate on the misery of the pain would have made it impossible to continue.

If you think, “Well, Heidi, why didn’t you just hail a cab?” you have clearly never been to D.C.  I won’t laugh at you.  Cabs are decorative in D.C.  They are not used for transportation, that I have experienced; mostly, they are used to soak tourists.  Until 2008, they didn’t even have meters!

Anyway, I started to cry when I got to Eve’s building, and when you’re in pain, everything falls apart at once.  I looked ahead at the week:  busy — oh God, I’ve got to go to Baltimore to see a very important doctor on Friday and I’ve probably destroyed that, and it takes four months to get an appointment with her, and the weekend is probably blown, too.  Ugh.

Eve’s groovy antique elevator cheered me up, and I realized I couldn’t walk into her office blubbering like a fool, so I composed myself.  I think now about a friend in college who always asked, “Why are you so positive???”  I used to admire her ability to be genuinely pissed off, without liking someone any less, necessarily. There is something so Wonderbread, Shiksa, deadly dull about my predictably perky, “Well How Dee Dooo, Eve, how are you?”

A cooler person would have said, Where was the &**))#(**^%ing bakery?

We did get there.  But I really did want to talk to Eve.  I like her, and I wanted to know how she was….and we had to talk first about the fact that the previous week really didn’t work.

So then I almost started to cry again when she responded to that.  You’ll never believe it: “You had a migraine?  You should have called me!  I would have fixed it over the phone!”

Really?  I wasn’t tracking so well. My “journalistic” mind was plugged by the bath of neurotransmitters involved in the pain cycle.  I remember looking up and seeing her shake her head at me earnestly as in, “No joke, fool.”  Eve is not one to be tangled with.  I’ll believe it until proved otherwise, because when you’re in my position, well, why the hell not.  (There’s more logic to my logic than this, but that’s all I had at the moment—think back to the magnet analogy I used last time I wrote.)

Finally, I explained to her about my long walk and that I was in pain.  Eve was sorry—she had used the euphemism “around the block” the way I would, in my normal suburbanite, car-fueled way, to describe the locale of the bakery.  Now she drew a map for me (for the record it is Le Pain Quotidien — like the one in West Hollywood where Margie & I ate — This one at 20th & P, where the old costume store used to be, if that makes sense to you.  You know you are old when you start defining your city in terms of where things used to be….).

Eve said, “Well, then, let’s treat this pain.”

This time when I was on the table, I wasn’t so afraid; I opened my eyes a few times and saw big hand movements above my body, bigger than ones used, typically, in a Reiki treatment. Eve spoke to me and explained what she was doing, trying to repair my energy.  She said that there was a big tear in my energy where the aneurysm ruptured, over my left leg, that the energy there is “in ribbons.”  It makes sense.

Unlike last week, she was working very, very slowly.  My body does not seem to be able to handle even the most incremental energetic changes.  That is true when we are talking about Western Medicine as well.  I don’t manage PT or anything else.  So not surprising that she encountered this in Medical Qi Gong.

Eve reported as she worked up that body that the energy over the aneurysms in my superior mesenteric artery & renal arteries is not ruptured.  That’s very good news.  We want to keep it that way.  The energy shoulder-level and above is frenetic, whereas below shoulder-level is stagnant.   That certainly describes the status of my physical ability.  I asked her if there was any reason she could find that would explain my trouble focusing to write.  She said, that the situation she had described was precisely the problem:  I am not grounded, meaning that the frenetic energy transpiring in my head doesn’t have any connection with the earth.

“So we’ll work on that,” she said.  Yes. Yes. Yes.

By the time she finished, the pain in my legs and feet had not only improved; it had stopped.  

….All this time, I have to say, I have not suspended disbelief.  I’m still thinking, well, this can’t really be happening, right? I want it to be happening, but anyone with a three graduate degrees should question this more, right?  What do you mean, “The pain just stopped.”  Wish fulfillment, Heidi.  I’m thinking that there is no way this is working….

As Eve was completing her work I continued to get a few electric shock pains on my left leg, so I showed her where they were.  She did some more work right there and stopped them. I still would give it a level 2 on that nutty pain inventory for a sort of all over electric shock readiness general misery that I was still feeling from my walk.  But the awful pain that had been making me cry, the kind that I could have expected for easily the next five days? She turned it off like a light switch.

How does that happen?  …..Well, for the most part, WHO CARES?

It was remarkable, people.  Pain control is one part of the fight.  Fatigue is another I don’t even know how to bring into this argument.

It is still staggering to me that I had the energy, then, to go do a list of stuff right after my session with Eve.  I went to Mom’s Organic Market to kill some time before I went to get my daily tan. So that involved walking a whole grocery store, and carrying two way too heavy grocery sacks.  Then I walked a couple of blocks and back to the tanning studio, and I walked up to the apartment and back for the cart, and then schlepped my groceries.  Even after I got home, it seems as though I set myself rather feverishly at completing a mountain of small tasks around the house, never sitting myself down until evening, at which time I was in some considerable pain. But I would not have been able to move past noon before, and would still be lost now from that long walk, before.

So there was hyperactive Tuesday, a more restful Wednesday because I needed it, but the pain was manageable.  Remarkably, I had another hypomanic Thursday, in terms of frenetic expenditures of work.  Then I traveled to Baltimore on Friday.  This is Saturday.  A pace like this usually puts me in the hospital.  Today, Saturday, I’m having to rest, but I’m capable of writing.  That’s because I’m still feeling Eve’s effects from Tuesday.

I have already recommended it to a cancer-stricken friend, who is in serious pain.  What better medicine could anyone take?  Medical Qi Gong has no side-effects, theoretically, although we do have to take into account the migraine I got. This is rivaling narcotics in effectiveness.

I would recommend it to you.  It’s certainly been validated and tested over many more thousand years than any modality any of us is using in Western Medicine!

I can’t wait to go back on Tuesday.  What can she do next?

Hot tip:  Do yourself a favor and read my new favorite blog, A Taxi Dog DiaryThe author’s tag line is, “After I died, I got a whole new appreciation of life.”  That was enough to capture me as a reader.  Instead of what you are expecting—another hearts and flowers tale of realizing life’s beauty and thanking God for a fantabulous disability—Dr. Taxi Dog takes a New Yorker’s approach to life after death—darkly comic.  His discussions range from the brilliant to the artsy; today’s was Disney’s animation of Gershwin’s Rhapsody in Blue followed by some interesting info.  Be sure to check it out!

Coming next:  I went to see the magical Dr. Francomano on Friday, and…what a relief…she was just as wonderful as she was the first time.  Sometimes you go back to wonder-doc and find out that first wonder-visit was an anomaly (particularly when you turn up with as many incurable illnesses as before).  Turns out, Dr. Francomano truly is the real McCoy!  More this week…

Day 286. You Can’t Study For a Genetic Test

So, I’ve been talking about my examination by Dr. Clair Francomano at Greater Baltimore Medical Center.

But. so. what were the outcomes?

Ehlers Danlos Syndrome (EDS) Testing (if you’re thinking, wait, wasn’t that her firm diagnosis already? Not genetically:  Dr. Francomano’s first recommendation is genetic testing for Hereditary Connective Tissue Disease (HCDT–these diseases include EDS, which is what we assume I have).  Thus they are going to analyze the COL3A1 gene for abnormalities.  That involved sending 2 vials of my blood to the University of Washington Collagen Diagnostic Laboratory. Academic Laboratories don’t work at the speed of your local medical lab that turns over your blood chemistry panel overnight (or in an hour in an emergency).  My results will take eight weeks or more (my academic friends will appreciate this breakneck speed).  Results are expected to show that I have EDS (and which variety, particularly; we assume the Vascular Type (VEDS) because of my aneurysms); or results may show that I don’t have the disease but instead have Fibromuscular Dysplasia (FMD), which is another disease that causes one to develop aneurysms — or, as the doctor suspects, both. By the way, if you’re interested, here is an abstract of a paper I just found that Dr. Francomano co-wrote, theorizing a new EDS version that includes both VEDS and FMD. Oh joy. Alphabet soup.

Having read that monstrously long more than thirty-page questionnaire I completed, and scoured my medical records, the doctor and her assistant saw that a 2010 body CT Angiogram had shown some “dilation of the aortic root,” not a good sign in a person with my aneurysm issues.  None of my fairly well renowned doctors had followed up on those findings. Dr. Francomano did, though.  There was something comforting, oddly, in her suggesting (prescribing) an echocardiogram.  And suggesting is what she does.  So kindly.  I couldn’t, wouldn’t, possibly say no.  She wants the echocardiogram to rule out [further] aortic root dilation, mitral valve prolapse, or any other structural heart abnormalities.  I think I’ll be fine.  But at this point, what else can I say?  That I am terrified? (I have an appointment on Friday Feb. 3.).

So of course I am to continue to have my regular CT Angiogram screenings at Johns Hopkins University at least annually, or twice annually if there are changes.  (Those are the body scans of which I have spoken to my friends.  In about 120 seconds, the CT scan machine scans my body and makes a perfect 3-D model of my body’s arteries below the neck.  It is incredibly cool.

However, Dr. Francomano notes that none of the previous scans have included the head and neck, and she asks that future screenings correct this.  I feel vindicated!  I have asked this question repeatedly at my screenings….”uh, how do we know that I am not getting a brain aneurysm?”  The answer has been a furtive, “Oh, you’re not a brain aneurysm type.”  And the Carotid Artery (in the neck) is one that sometimes explodes without warning.  It’s critical to monitor for any signs of difficulty, right?  God, I can’t tell you enough how much Dr. Francomano just makes sense(Incidentally, the answer is that it takes so much time and that it may take two appointments and that much more radioactive dye exposure.  Sigh.  Is that a good reason?  Why they can’t just do it all in 240 seconds is beyond me.  The geniuses at Johns Hopkins are sorting that out now — all because Dr. Francomano says so.  She rules.)

Can you imagine how having worries like that all the time weighs on a girl?  You leave the doctor’s office after the CT Angiogram thinking, wow, I’m not an expert in this at all, but they seem to have missed the boat when they didn’t scan my head and neck.  What if I have a brain aneurysm?  What if my carotid artery ruptures (you die within minutes)?  My body has the potential to form an aneurysm anytime, any place, anywhere.   When I asked about why they didn’t scan my head and neck, the doctors waved me away.  I used to cry on the way home from Johns Hopkins visits in Baltimore (trying not to let my parents see), not tears of self-pity, but sheer frustration.  There was nothing I could do.  That sums up my last three and a half years.

So you may understand why right this minute I want to nominate Dr. Clair Francomano for President.  (Except, I take it back because then she couldn’t be my doctor!)

You may also understand why there was no need for Dr. Francomano to add anxiety to the list of diagnoses.  It comes with the territory.

Two more surprising diagnoses came up.  When the doctor entered the room and I greeted her, she said, “Oh, you have a hoarse voice.  Do you have a cold?”  I confessed that I did not.  At one time, I thought I had a sort of pleasing voice (I thought).  I liked to sing. I just have gotten progressively more hoarse over the years; I used to think it was from my sinus problems, but then it seemed a bigger issue, and I had even bigger concerns to worry about, so I rather let the voice problem slip out of my focus.  I did see an ENT at GWU who my allergist recommended.  He promised to fix me, injecting fat into the vocal cords at my great expense.  When my voice got worse, he about-faced: “Oh, yes, I forgot to say that was one of the possibilities.”  My failing voice was another one of those “soft” signs that whatever was wrong with me (I didn’t know what it was) was getting much worse, systemically.  So I just forgot about it.  Denial is a wonderful thing.

Chiari Malformation - a fault at the base of the brain

Dr. Francomano nodded. “Okay.  We’ll take that up later.”  She asked me if I had ever heard of Chiari Malformation.  Indeed I had:  it had been one of the diseases I studied closely during one of my sorties into the medical journals on late, sleepless nights of pain.  Chiari Malformation causes terrible headaches. I wondered if I had it, but the literature said it was so rare and typically found in infants with spina bifida, so I assumed that #1, I probably didn’t, and #2 I would be considered a hypochondriac for ever asking.  However, Dr. Francomano said, “For a number of reasons, I think you do have Chiari Malformation, with or without cervical instability, which is an extremely rare disease, except among HCTD patients–for you it’s quite common.”  Swell.  You can read about the specifics, but it causes a host of neurological problems, including headaches WITH INTENSE PRESSURE BEHIND THE EYES.  Oh gentle Jesus, can I tell you about those, people.  Also, hoarse voice!, dysautonomia (a disorder that has a number of symptoms of its own, including exercise intolerance–I mean that it makes you completely sick afterwards and often the day or two afterwards–something I have had severely for the last several years), intolerance for heat and cold, sleep disturbances, brain fog, and memory issues.  Well, that pretty much describes my last five to ten years.

The interesting thing is that there is a simple, albeit temporary fix:  wear a cervical collar (of a specific kind).  How easy.  Dr. Francomano has practical solutions for things that I love.  In addition, she says, there’s a neurosurgical fix.  I think I may leave that alone.  But the cervical collar sounds workable. My friend John suggests that I try the big gold ones that African Princesses wear, which sounds even more workable, especially if I could have a silver one and a copper one.

So another one she brings up is Occult Tethered Cord Syndrome. I’ll let you read about it, but this disorder is associated with Chiari Malformation: if the Universe graces you with one, you’re likely to win the lottery on the other, too.  Still, for the record I would like to state I show just the very most basic symptoms of the syndrome, gratefully, and none of the ones that involve the word “incontinence.” The syndrome, however, is progressive, meaning that it gets worse over time. Yuck.  Well, so the test, she offers, to see whether indeed I do have it, involves going to Greenbelt, Maryland, having a urinary catheter inserted, and then having it reached around all up in there (and that isn’t even the treatment).  I don’t know which of those options is worst (possibly having to go to Greenbelt…). I just said no-kay!

Not surprisingly, Dr. Francomano was fine with my refusal.  She explained, “Here’s our philosophy: we offer you six or seven options, each of which has the potential make your life 10% better.  Even if you try four of them and they work, that 40% would make your life substantially better.”  I thought that was pretty profound! So even if I skip that bladder business, I’m still headed in the right direction for some improvement.

There are a couple of things the doctors can treat with meds.  She diagnosed my Mast Cell Activation Disorder, which is a situation I already was about 50% aware of; that’s when you become horribly allergic to everything.  That has been painfully clear to me for some time, since I have hives all the time, allergies, my diet is so limited, etc.  Well, Dr. Francomano actually has a drug that I might be able to try, Gastrocrom (in liquid form), which if it works, might mean I could add back some foods.  Wow.  Like, what if I could march right down to the Cold Stone Creamery and order a Sweet Cream with Reese’s Cups?  NIRVANA.

However, toward the end of the four hours, I was overcome with the sheer number of congenital abnormalities I have.  I had to sit back in my chair and take a deep breath so the panic attack that was rising up and into my chest could evaporate and I would not humiliate myself.  Then, I thought I might cry.  She had just finished listing so many illnesses, malformations, rare diseases—deformations of my body, essentially, that I just sort of didn’t know how or what I did to get a body that is so diseased, so very different from everyone.

In fact, the whole next day, my eyes were the deepest red, as though I were going to start sobbing any moment.  I didn’t want to cry exactly.  I just felt deeply wounded.  God forbid my heart should pound, though, right? Don’t want to stress my aortic root!  Don’t want that BP up…there’s a delicate balance on those aneurysms!  (Just a little gallows humor, folks!)  When, back in that moment, I told Dr. Francomano how I felt (well, sort of in sum)  she took my hand, looked in my gray eyes, and said, “I’m sorry.”  Just very simply and honestly.  It moves me even now.  I’ve never had a doctor be so attentive and so honest.

So get this. On my way out the door, she gave me a ten-page report explaining my diagnosis and treatment plan. It also explains some basic information about hereditary connective tissue diseases, including the connections between some of these diseases and the many related nutty disorders I also seem to have. When has that ever happened to any of you?  You got the doctor’s report on the way out the door?

Well, I needed it because, as you have probably gathered, the sheer breadth and depth of what she told me and my mom was so vast that it would have been impossible for anyone to remember.

I was a little nervous about discussing my medical history in such detail on the internet, under my REAL NAME as I wrote this.  But then I thought about how much I have suffered with nobody believing me about my symptoms, the illnesses I thought I had.  So I just said, the hell with it.  This is information that belongs out there.  I don’t care who knows it.  And besides, I only have 286 days left to live, right?

And…but…so…as for my panic about being a mass of congenital abnormalities?  I have to comfort myself with the thought that I’m the same mess I was yesterday and five years ago.  It’s nothing new, Heidi. She’s just giving a name to all this angst that has been lonely torment for so long.  Now we all can know about it.  So hooray, I…think.  What do you think?

Day 290. A Taste of the Last Ten Years

So for the last fifteen years at least, my body has mystified me…and the doctors.  It’s been a time of frustration, worry, tears, and as a result I have become a de facto junior medical researcher, by way of the many sleepless nights in pain spent in front of Google, searching for a reasonable solution to the puzzle of what ever could be wrong with me.

That’s easy to write, even easier to read and dismiss. But in the middle of that great desert of agony were deep mines misery of that looked like this:

A terrible, frightening symptom appears, and it persists.  Let us say it is headaches, and I don’t mean tension headaches we all get (I get those too).  These are headaches that feel as though my head will explode (remember this detail:  it will be important much later).   Screaming, crying, crawling on the floor, vomiting, vision blurring, halo-seeing, temporarily blind, memory stealing, cognitive function stealing, fucking horrible headaches.  Forgive my profanity please, but one bit of advice (my conservative mom!) gave me to help get rid of pain was to swear about it.  

So a general practitioner doesn’t know what to do with this kind of pain.  I probably saw ten or twenty of these doctors.  What bothered me is that as soon as they heard the word “headache,” it was like their ears turned off. Right away, they gazed at me in that sort of suspicious way from under the eyebrows:  they didn’t see a pain sufferer, but rather a drug seeker.  Who could blame them when their professional journals (you know, like the Journal of the American Medical Association) seem to focus so closely on the overuse of opiates (drugs like Vicodin and Percoset)?  No question that people like to pop the Percoset. Furthermore, the average person can easily feel slightly superior to the an opiate addict, who after all is just a stone’s throw from a heroin addict, and may shake hands with one who can’t get some heroin.  

All this judgment is easy…until we need those very drugs ourselves.  I learned that quickly. However, I hadn’t reached that point early on with the headaches. I just wanted help, as in, “Tell me, doctor, what you know that I do not, so that I can get rid of these *(&^%$ headaches!”  Finally, I reached the point where I would start a doctor appointment this way:  “Doctor, I am not seeking opiates from you.  I am here to ask you to help me solve my problem.”…Too bad none of them ever did.  

So, since none of them suggested it–remember, I was a woman in my mid-thirties, a ripe age for “complaining.”  Studies show that younger women and men with the same complaint get completely different responses from many doctors.  Remarkable, isn’t it? None of this is anyone’s fault, though, I’m convinced.  I’m just saying. Since none of them suggested it, I referred myself to a specialist.  

 I had nothing but time, mind you.  I anticipated living to a ripe, old age back in the early 1990s.  There were days when I might have paid to shorten my life, but it never occurred to me that I might have more wisely rushed things along…that I might be writing to you today, with fewer than 290 days left to live.

To get an appointment with a specialist, in this case a neurologist, takes three months.  Frankly, they are the absolute worst of all the specialists: hardest to see, least adept at problem-solving.  Indeed, if the topic here were neurologists, I could tell you the most horrific bedside-manner stories about them. I know better, though, because there must be some great neurologists out there that I just didn’t meet.  I am sure of it.  The system is flawed, though. My point is that it took nine months to see a neurologist enough times to have tests and do a realistic medication trial of a single drug.  Besides, what if I had an after hours emergency, like a drug reaction (that happened several times)?  Forget calling a neurologist. The one time I was fortunate enough to see one through a university hospital, a resident doctor on call answered after hours and tried to help, which was a good thing.  However, a private practice neurologist disturbed on a weekend did answer, but she was extremely unkind about it.  Now, as a result of her unkindness, if I decided not to work with her, then another year of testing and trials with the new neurologist would (and did, several times) pass.  This was my life, through all the specialists, good and bad.  (By the way, I have really great health insurance, through a PPO, meaning I get to choose my doctors, so I was able to do a TON of research before I choose a doctor.  I know of what I speak because I had an HMO long ago, and that was true quicksand.  In that case, I didn’t have the opportunity to do that kind of lengthy research to find the right doctor; I just got whatever doctor was chosen for me: typically that would be “unluck” of the draw.  

The neurology carousel, that troubled system, meant that if I had an unusual symptom, I would likely never find a doctor or a nurse who could help or explain it to me.  If I had an exacerbation of severe days-long headaches, or allergic reactions to medicines at inconvenient times, too bad, particularly if they were outside of the three-month cycle of trying to get an appointment.  Furthermore, the specialists offered few possible diagnoses; if I didn’t have a symptom set that fit into those possibilities, then the doctors were not interested in working further with me to determine the diagnosis.  I never found a doctor that was interested in doing serious differential diagnosis. After all, headache patients are known to neurologists (and other doctors) to be a hassle.  Ironic, huh?

I tell all this because I had so many symptoms that encompassed so many specialties for so long that it baffled everyone I knew–to the point that it truly seemed I had made it all up to be appalling.  

However, this Wednesday, after being sick for all these years, and having had a ruptured aneurysm three years ago, and finally the informal, de facto diagnosis of Vascular Ehlers Danlos Syndrome, I got to see an amazing geneticist, Dr. Clair Francomano, in Baltimore Medical Center (at the Greater Baltimore Medical Center, which appropos of nothing is very chichi).  Dr. Francomano (I can’t believe I’m saying this) was every bit worth the wait. For the first time in my life, someone understood every single one of my symptoms and was able to make diagnoses and solve problems in sensible ways I never thought would be possible.  We met one time.  ONE TIME.  It was long.  Four hours.  That’s long for anyone, but for me, it was an endurance (pain) test.  I didn’t mind a bit.  The whole time, it felt like my body was electric.  It was.  It was plugged into a grid of unbelievable brain power, caring, and intention to help.

Tune in next time for what it was like to meet the geneticist….

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.