Day 121. Sliding Doors, Shifting Narratives

So things have been changing for the better in this new, less painful world. I was able to garner great gobs of vigor to take part in a life-changing experience last Monday.  The Friday before, Gina, the dynamo woman in my writing group, called me from L.A. where she lives, and told me about Narrative Strategies, a workshop she had taken that was so fantastic, she really thought I should do it.  Her words were so compelling.  Really, I was most touched that she would seek me out and insist that she knew something was good for me.

Fortuitously, the workshop came to DC on Monday and Tuesday. I talked to Gayle, one of the facilitators, who turned out to be an amazingly kind and genuine person.  I had to tell her about my limitations before I could commit to two eight-hour days of sitting still because at the moment doing so sounded impossible.  She was so nice; she told me to pull up to the townhouse on Logan Circle, and then she came and parked my car for me.  Both she and lead facilitator Chené made me every bit as comfortable as I would have been at home.  Not only that, but they gave me a scholarship to attend so that I could afford it; otherwise, I probably would not have gone.   That was remarkable. Gayle is an angel.

The other people in the workshop were so cool.  Need I mention how rare it is that I actually like other people? Each of them was a whirring spiral of fantastic energy that I ended up learning from and admiring.  Best of all was the instructor, Dr. Chené Swart, from S.A. God, she was breathtakingly beautiful, but also just totally honest and real and cool. I am certain that absolutely every participant leaves with this feeling because she touches him or her and makes a personal connection; but I left with the sense that we had made a sisterly bond.  We had several moments of talking, formally and informally, that felt so meaningful.  I felt so sad when it was over and she was going back to South Africa, like “Oh no, there goes my new closest friend….”

I haven’t told you the most important part yet, the life-changing part, the narrative work itself. Narrative Practices, theoretically, started as a form of counseling.  Then when Chené learned of it, she began using it as a way to work with communities, teams, and organizations, specifically doing work with Organizational Development and Human Rights groups.

So, the idea of this workshop is for you to be able to “re-author” your life. You begin by looking at a narrative in your life that is true and fixed.  A narrative can be any point of view you’ve been holding about anything in your life, maybe something that has been making you feel stuck. Then you examine what is keeping it in place.  For example, my narrative at the moment was “Am I Sicker This Year Than I Was Last Year?” That was the obsession I’d been having over the previous two weeks.

Then you go through a complex process of examining how that narrative got there, beginning with examining the external, taken-for-granted beliefs that keep it there.  So, for example, the doctors’ opinions (i.e. Dead at 48), the medical establishment’s lack of research into connective tissue disorders, Western Medicine’s/my focus on perhaps the wrong set of data, the extra-close care my family takes of me, etc.

The analysis becomes much more complex than this, when you look at how the narrative influences very specific aspects of your life.  The rules for discussion make all the difference as well.  No one can place words in your mouth:  you title your narrative and give all the details yourself.  People in your small group (and the instructor herself) cannot use judgmental language (positive or negative) or provide the language for your narrative at all.  Thus, you take a profound ownership for your statements.

Ultimately, though, you learn that your story is constructed outside of you—it’s just a story you gave meaning to, not the Truth.

Once you understand that, once you have lifted that narrative outside yourself, your job is to develop the title for an alternative narrative to the original, and flesh it out.  In most cases it is a narrative that exists, but perhaps you’re ignoring it, blind to it somehow because of the way it’s fixed within your culture.  Mine became the nauseating, “I’m Not Going to Let Being Sick Keep Me Down” (I’ve since renamed it to the more positive “I am Going to Live my Life Well According to the Resources I Have For Me.”  That feels more descriptive, and less jaunty-jolly). With either statement, I had to build in what I would do when I am sick, because realistically, I can’t throw off those crutches and dance on a day when it isn’t possible. Once you have that title in the workshop, you go back through the same exercises as the first day with this new narrative and discover possibilities, but the work continues outside the workshop, as you can see.

(I should mention that when I described the process to Carlos, he simplified the entire thing with two sentences:  Why not turn the original narrative of “Dead at 48″ to “Dead at 84″?  Leave it to Carlos!  Genius, as usual!)

It’s hard to describe the transformation that takes place without belaboring lengthy information that is meaningless to those of you who have not experienced it–yet–without the extremely warm and special personal context. The closing ritual, different for each group, celebrates the transformation causing an extraordinary a feeling of light.

I would strongly recommend Chené’s workshop on Narrative Strategies.  It’s like someone takes off your dirty glasses and cleans them; suddenly you can see your world in a fresh and wonderful way. You can feel a great sense of power, which can be extraordinary for a person whose life is largely powerless.

Sorry to go on so long.  It feels so good to be writing again.

Day 124. Like Sands Through the Wormhole

Things have been so icky for the last several weeks I have (obviously) been skipping my blog writing, journaling, and painting.  I just haven’t felt like any of it. I had one medical test that made me feel so bad, I was just flat on my back for days and days….and do you know what?  They haven’t even bothered to give me the results yet.

Then it has just felt like things have been moving so fast.  There is a doctor appointment downtown every day, and then I have to get to the tanning bed; when you don’t feel quite 100% yet, just getting this stuff down sucks up all the resources.

I write my blog in my head sometimes.  Even then, the narrative trails off.  I’m tired.

BUT, I have a gorgeous tan, mind you, since I keep following the advice of “Kate Middleton,” my biologist-medical consultant to get an hour’s worth of sun each day (or its tanning bed equivalent).  By the way, by her permission “Kate Middleton” may now go by her proper name, Dr. Kaye Blee.  It’s thanks to her I am truly a bronze goddess, the envy even of the women who work at the tanning place.  I keep meaning to have someone take a picture, but I take such rotten pictures.  Still, if you saw me you would agree that even my multi-scarred legs look good.

Things have taken a turn for the better, however.  I mentioned not being able to gather any enthusiasm for going to the newest pain doctor. Turns out new pain doc seems to be a keeper. Within an hour, he saw the mistakes the old guy was making and laid out a treatment plan with OPTIONS.  He has some ideas for treatments that I have not been offered before that seem like they are very promising.

I had a minor one late last week (cortisone injections in my Sacroiliac Joint, which made a dramatic difference).  In the future, I will have Botox injections in my shoulders and forehead (oh, so sorry, buh-bye wrinkles!) because of my myofascial/migraine pain.  Most interestingly to me, though, is the option for me to take part in a 3-day infusion of Ketamine.

Long past my Ecstatic prime, I was aware of Ketamine as a disco-drug in the 90s (see users’ descriptions of “going down the k-hole” here).  Someone offered it to me once in a bar, and I asked my brother about it.  He said, “Uh, dude.  Those people are so stupid.  That is an animal tranquilizer.”  Ironically, Ketamine is now used as a human tranquilizer–or anesthesia, that is.  But the newest use for it is as a “reset” for pain receptors.  There’s a topical pain cream that is much like the great pain cream I have been using, only with Ketamine in it.  Thanks to new pain doc, I have the new Ketamine cream already and it is very effective. Apparently, a three-day iv trip down the k-hole (at controlled doses, of course) can reset one’s pain receptors considerably. Research on the topic is enough to make me want to sign up for three days as an inpatient. Still, I reserve optimism about this treatment, this doctor (I won’t even name him yet) because I keep becoming so effusive for no good reason.  I’ve decided to conserve my easy ejaculations of exultation.  You never know when you’ll really need ejaculation.

So to review, I‘ve started with the SI Joint injection, which I’ll stick with for a while.  The Botox injections are on the table as I understand it and will happen shortly. Wiggling down the k-hole will be some time in the future.

It’s really nice to have a list of possibilities to anticipate when pain is a permanent fixture.

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?

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 181. All About Eve

Think about a time when you played with magnets, and you pressed two together and tried to prevent them from connecting.  It was difficult, wasn’t it?  If you consider why that was, you know that a magnetic force was attracting the two, drawing them together.  Similarly, if you held two magnets of the same polarity close to each other, it would be mightily difficult to connect them. Again, the force that prevented the connection is invisible, yet you would be able to feel it just as realistically as if it were alive.

So, there’s no craziness or made-up science involved in the argument that I make when I say powerful invisible forces surround us that influence substantially.  This principle has had a powerful influence on me over the last fortnight.

Alternative Treatments have been my theme since I quit physical therapy and tried to address my pain differently several weeks ago. For two weeks, I’ve been to visit a fascinating practitioner, Eve Soldinger, who does acupuncture and something called Medical Qi Gong; I’ll let you look it up for the explanation, but briefly, Medical Qi Gong is a branch of Chinese Medicine.

Medical Qi Gong is one of the five branches of Chinese Medicine (acupuncture, herbal medicine, meditation, and nutritional advice).  The idea behind it is to redistribute the Qi, or vitality, of a person.  Some people call it “energy work.”  It seemed a bit like having a Reiki treatment, only substantially more significant somehow. Chinese Medicine is used by one-third of the world; while it may seem strange to those of us who find it unfamiliar, it is status quo in a large part of the world.

MQG is like acupuncture without the needles or the pressure of acupressure.  If this sounds too “goofy,” think back to the concept of he magnets. Eve is realigning the energy of my body, and it is dramatically effective.

The great Dr. A., my therapist, referred me to the practitioner, Eve Soldinger, who is also his acupuncturist. When I left my physical therapist to begin this treatment, he wisely was concerned about the wisdom of poking holes in my thin skin with its autoimmune disorder tendencies–the whole thing just seemed wrong.  I wasn’t sure how to explain that to Eve when I called.  Surprisingly, she had figured these complexities out before I had said two words. She suggested that Medical Qi Gong would be a better approach for me than acupuncture, and was well aware of that because she treats three people with my disease. That’s unusual, since customarily I have to spell E-H-L-E-R-S D-A-N-L-O-S for healthcare practitioners, and often give a minicourse on VEDS basics. But Eve really knew about how to approach the pain problems of my disease.

That first day I went to see Eve was a particularly bad day for me.  My shoulders were knotted, and my legs hurt, hips down to the balls of my feet. Yet, I found out it’s hard to have a bad day in Eve’s office. Even the elevator is charming. The building is on 18th St., backing up to Washington, D.C.’s Dupont Circle, one of my favorite neighborhoods.  I never get to go downtown anymore now that walking is so hard, so just being there made me happy. It seems like no one has ever updated the building’s amenities, as though it has been frozen in time. So, the ceilings are low, and the hallways are narrow and dark. I looked warily at the stairs ahead of me thinking, “Uh-oh! The third floor is a long way up!” But when I walked ahead, I saw the most charming elevator, probably haven’t seen another one like it since I was tiny, little girl, when I was little in Argentina in the late 1960s. And even then it was an antique.

On this elevator, a note lists instructions on using it because, obviously, no one knows how to use manual, gated of elevators anymore.  “Hold the button down to send for the elevator,” it says. When the elevator gets there, I have to use every bit of my force to pull back a gate and at the same time the elevator door with all my might.  Then, because the door is on a hard spring that will snap it shut, I have to use the weight of my body to force the door open to jump quickly into the elevator car before it snaps shut again. Next, I push the button for the third floor.  That final step, at least, is automated.   I expect there to be an elevator operator wearing a double-breasted, gold-buttoned jacket and a charming little round cap. There probably was one, not very long ago.

When I got upstairs to Eve’s office, the lights were dim, and it smelled good. The air seemed calm and peaceful. The furniture, the whole place felt comfortable, as though I no longer needed to rush, or try to act or appear any certain way. Even better, Eve was comfortable, and comforting. She and I spent about an hour talking before the therapy began. She is the kind of person who I would just like to have coffee with, or who I would invite to a party. She’s just a great deal of fun to talk with, extremely engaging, but in a refreshingly intense way, not superficial. The only difficulty I had was settling down into the therapy part, which involves sort of breaking character from the “We’re friends hanging out” person to the patient.

Having said that, when Eve turns into the therapist, the air changes in the room to a deep intensity (think magnets!).  One can feel the keenness of her intuition and attentiveness. Frankly, I am not sure what she did this first time because I kept my eyes closed, but I do know that she is a well-decorated and certified practitioner of Chinese Medicine.

I’m going to skip ahead because she did a bunch of stuff that I can’t explain.  I had my eyes squinted shut (it sounds stupid, I know, but I was afraid to look!). I knew her arms were moving, but I don’t know what she did, only that I felt better–but she never touched me.  Amazing!

At the end, though, suddenly, when Eve stood above my left shoulder and put her hand there, my shoulder completely relaxed, whereas the shoulder and every muscle connected to it and my neck had been in knots before.  I could hardly wait for her to walk to the other side of my body and repeat whatever it was that she had done.  Curiously, it was the front of the shoulder, the very point where Mike, my great physical therapist used to work on a lot.  I was confounded.  How would she know where he worked….and why would they work on the same spot?  I asked Eve what drew her to that spot, and she replied that it was a lung meridian.  Hmmm.  Mike would have said that he had located a trigger point and he was addressing myofascial pain referred up toward the shoulder.  Both had the same result, but Eve’s was more peaceful.  “Just get over to the right side as fast as you can,” I thought.  The release of that awful pain is exquisite.

Whatever this method is, I’m not sure, but it works, I kept saying to myself.  When I left the building, after delighting again in the lovely elevator, I almost fell out the front door; the step out is about ten inches down with no warning.  That was a nasty surprise to my atrophied leg muscles.  That struck my skeleton–my shoulders out of line again–and just like so many rubber bands snapping shut, I felt dozens of muscles wind up into their miserable trigger points for that terrible warning sensation of pain.  When I tried to tell them to quiet down, that this was mind over matter, and there was nothing to worry about, they laughed at me, snapping like sling-shots

While I was still exhilarated about meeting Eve and looking forward to our appointment the following Tuesday, I didn’t have much time to relish in the feeling because over night I got slammed with the worst migraine I have had in recent memory.  It felt like someone had put a large iron pot over my head and beat it with a crowbar.

None of the ordinary tricks I use to I take away headaches worked. Usually I go sit on my PEMF Device for about 45 min. That can wipe out the headache pretty well. It works very, very well if I take two Vicodin before I do that. Ordinarily, even if it’s a very serious headache, that persists those steps, I force myself to get up and out, if I have previously scheduled doctor appointments, even though I may be spacey or not feel well. However, this headache was the kind that made me sick to my stomach. I could not lift my head from the pillow without the room spinning around.  All I could do was to lie in my bed and hold the pillow close over my head, alternating heat and ice for a good part of the day.

I don’t know whether it had to do with Medical Qi Gong or having consumed a food allergen by mistake, or just walking in the city and stumbling. It’s not easy being a bronze Goddess.

So, now it’s a week later, and I have a different perspective. Eve performed nothing short of a pain healing miracle during the second visit.  I’ll write about that treatment next time.  Stay tuned!

Ever heard of Medical Qi Gong?  What’s your take on these alternative treatments? Have you tried them?  What’s more, does your insurance pay for them?  Mine does not.  I’m thinking that it’s worth it.  I can sustain it for a few months, at least.

Day 186. VEDS Pinup Girl

Call me the Bronze Goddess.

Aaah, that feels so good. I haven’t been called Bronze Goddess for at least ten years.

I had to stop going in the sun. The sun gives us skin cancer, doesn’t it?  Besides, I have so many allergies.  The pollen makes it hard for me to stay outside without feeling ill.  Then there’s the heat. I feel overheated anymore after only a few minutes, and when I am overheated, I get one of my headaches.  The outcome of this equation is that I have had a ghastly pallor for a long time, unless I used one of those fake bronzers, which, after lengthy use, ultimately I decided can’t be any better for us than the sun.  Bitch, bitch, bitch, bitch bitch.  Ach!!!

My naturally brown friends are having a laugh right now.  They are the lucky ones, laughing at us, the white people who perpetually attempt to copy their perfect hues.  The truth is the truth. I own it. As the Potawatomi creation myth goes, I am one of the clay people who didn’t get baked enough and came out lily-livered, instead of the ones who were baked just right, nice and brown.

Well, let me tell you about one of my alternative medicine experiences this week (watch for my upcoming entry on Medical Qi Gong!). On Friday I saw a private consultant for medical conditions. I have the sense that her practice is somewhat exclusive, so I won’t give her name. Let’s call her….Kate Middleton. Middleton has a compelling story. During her career as a scientist, she fell ill with a serious disease from which her symptoms became extremely grave. The doctors gave her medicine for them, but the side effects were so unpleasant that she refused the medicine and decided to treat herself. So that she could do this, she read the very most current research about her illness, the kind that sometimes gets overlooked by doctors. She is particularly interested in studies involving using vitamins, supplements, and foods to treat illness. Because she’s a scientist who is well-qualified to read studies such as systematic reviews, meta-analyses and randomized controlled trials and see that they are valid and relevant, and not based on wishful thinking. (In addition, she has a connection with a medical office, which supports her with a medical license, reviews of her decisions to make sure they are medically sound, and the prescriptions.)

Indeed, after finding some very promising studies about her disease, Middleton started treating herself and turned around all of her most debilitating symptoms.  As a result some of her friends asked for help in their difficult diseases. From there, her business started, by word-of-mouth.

She was interested in my genetic disease (VEDS) especially because it is unusual, and because I don’t have just one but five unusual diseases (MCAD, Addison’s, Occult Tethered Cord, Chiari Malformation). I spoke to her on the phone at length before I came and e-mailed her medical records. So when I arrived to my appointment she had done a great deal of scientific research about my specific needs.  What a great use of everybody’s time!

The questions Ms. Middleton asked were unusual, certainly not the typical medical examination questions.  “How do you feel in the sun?” and “How do you feel after a big meal?”  It was hard to tell what she was trying to determine.  I realized how much in control of a typical medical examination I am at this point. I am so experienced at going to the doctor; I almost know how to do it better than the doctors themselves. My mom, who is witness to almost every one of these appointments, pointed that out to Ms. Middleton: “Heidi has to instruct the doctors because they don’t know what to do with her.” True enough, but this case was entirely different.

This is where the sun comes in. My dear Ms. Middleton said [verbatim], “You know all that stuff about skin cancer and stuff? Blah, blah, blah, blah, blah. Forget it! I want you to be in the sun at least 2 hours every single day. I’m not kidding. Fully in the sun.  Outdoors.”  My mind started racing. “COOOL!!” and “Oh my God, this is nuts.  I get sick in the sun” and “Is she crazy?” and “When can I start??” and so on.  Ms. Middleton explained the science behind it.

I’m just learning this extremely complex information. As I understand it, taking high doses of Vitamin D, along with high-ish doses of Calcium and Magnesium, as well as Niacin does a wealth of things to do a Bronze Goddess good.  The first thing is that taking the supplement of the Vitamin D in combination with going in the sun allows the body to use Vitamin D properly. For someone not taking the supplement, the body doesn’t store the value of the sun’s Vitamin D (as I understand it).

Taking Calcium is critical because Calcium reacts with the Vitamin D and it is stored properly, for example in the bones.  Magnesium and Calcium also bind with each other and absorb more easily when taken at the same time.

Niacin’s role I’m not quite as sure about, although I do know it was crucial that I took some before I sat in the sun.  Traditionally, Niacin is a first-defense treatment for high cholesterol. Surprisingly, doctors are using this B Vitamin before they reach for pharmaceuticals because it is so effective.  It won’t hurt me, then, to lower my own cholesterol a couple of points, since I had a borderline high score on my last trip to the lab (and what a rotten deal that was—I’m vegan, and I eat a relatively healthy diet of fruits, veggies, and grains; I’m the polar opposite of the standard American diet and I still have high cholesterol?  God has blessed me with yet another anomaly).

About the formula:  You’re probably wondering when I will mention doses.  I’ll tell you mine, but please don’t take what I am taking because you aren’t as sick as me.  Even if you are sick, it is extremely unlikely that we are similarly sick.  Here goes: I take 50,000 units of Vitamin D, once a week. Then, every day I take 1500 mg of Calcium, divided in 3 doses. I take 1000 mg of Magnesium, divided in 2 doses. Right now I’m taking 50 mg of Niacin, but I will be building up to 100 mg, divided in 2 doses.

I have very little information about which kinds of vitamins or brands are the best to choose, other than the type of Niacin to buy is very important. Do not buy the type that says anti-flushing. According to Ms. Middleton, you might as well throw in the trash. Niacin makes nearly everyone flush, or break out into slight rash. It’s important to know the situation is normal and temporary—and critical for me to know because I have such ridiculous allergic reactions to everything. I might have panicked.

They plump when you cook 'em.

Ms. Middleton told me that she actually likes the Niacin rush because of the well-being that follows. I was skeptical I would ever feel it. However last night when I “came on” to my Niacin, the tops of my feet started to itch and then I felt the onset of a mast cell reaction,when the mast (allergy) cells started to act up. A great description of the sensation is that the skin all over my body felt just like a hot dog in this one advertisement.  Do you remember “Ballpark Franks: They plump when you cook ‘em!” Then, in the ad, the hotdogs would puff up about 50%.  Well, that sort of blowup is how my skin feels  all over me; it plumps up like a little mini blowfish. So I started to get that feeling up my legs, and I thought, “Oh, God, now it’s going all over me.” But then it stopped. I was shocked when I got a complete surge of good feeling, like I was on drugs. I said to myself, “I like this. This is good. I think I would like to take another Niacin.”  I didn’t, of course. These days, I’m not inclined to take drugs, like extra narcotics. Their charm is lost on me at this point in my illness because I have to take them. I’d prefer to be far away from them rather than having to take them every day. So the sense of enjoying a chemical substance was a surprise to me. So I was already to take the second dose today. Yahoo!!

I didn’t get the rush the same way today, but that didn’t matter because it was time for me to hit the sun.  The alternative for the pollen problem involved in lying in the sun for me is tanning beds.  Can you imagine?  I don’t care to admit how many times I have sneered at people leaving the tanning salon like they were fools. Who would lie in a tanning bed with all the research about the sun and skin cancer?  And the thick skin.

Thick skin!  Precisely.  Lying in the sun thickens the skin.  Do you know how badly I need to thicken my skin, particularly that on my shins?  I practically ran to Palm Beach Tan and bought a month-long contract.  I spent five minutes in a tanning bed, first time in my life, and not a lick of sunscreen (gobs of moisturizer, though).  Just in case you are wondering….I will not be having tan lines.

The only problem I had was that five minutes into the time, I looked up and it registered that the tanning bed looked like a bizarre sci-fi coffin.  The panic attack started buzzing up from the center of my gut, like some kind of an awful wasp, and as it did, I had to smack it down with my internal anxiety fly-swatter so that I didn’t run screaming from the room, naked as a jay-bird.  Next time, I am promised a bed that I can see out of.

I have a tiny bit of a tan already, surprisingly.  It is barely visible, but it’s there.  In just five minutes, I lost that ghastly pallor on my face that made me look like I am very sick. Oh, and tan fat is substantially minimized. Beauty should exude from me; hell, I will be practically radioactive from my daily sessions in the coffin! Now, to get dressed up, instead of wearing foundation, I will just need a caress of bronzing powder.  Life is good.

At the end of the appointment with “Ms. Kate Middleton,” I could barely wait to leave to get to the tan studio.  We were joking around, I kept saying how great I was going to look next time I saw her.  This is such a big deal: it is the first time I have felt optimistic about my health after an appointment like this for a long time.  This is a big deal. Ms. Middleton was laughing and she said, “Yes, you really are going to look great.  You can get pictures done and be the first VEDS Pinup Girl.”  Then we all really laughed.

You’ll be the first to see the pictures when they’re taken! (They should look like that one above.)