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 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.