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.

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Day 193. A Zero Day, Skipping Stones

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

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

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

Old Lady Eyebrows

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

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

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

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

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

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

I am drawing a complete blank.

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

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

Day 210. What NOT to Say to a Chronic Illness Sufferer

I saw a great graphic on a fellow blogger’s site that should probably be required reading for just about everybody. This blogger borrowed it from chronic-illness.org, run by a cartoonist with multiple chronic illnesses.

I was happy to see a site about illness that wasn’t all about wallowing in misery (for an example, see my above paragraphs). This cartoonist has a number of funny sayings.

In large text, on one, for instance, we see “Coping,” and right afterward, the word in tiny font “sorta.”  Hilarious. I love things that tell the truth like that. Or how about “My disabling chronic condition is more real than your imaginary medical expertise.” Booya!

But I really appreciated “Things NOT to Say to Someone with a Disabling Chronic Condition.”  Maybe you have to be sick to appreciate this, but trust me; it’s funny.

My mother suggested that I preface this explication with a disclaimer.  She wants me to convey the understanding that people say things like this out of love, and because they don’t know what else to say.  Point taken.  Still.  A few of them should be without absolution.

But you don’t look sick.  How can I possibly respond to such an accusation? (Sometimes the idea is couched in “You look great,” dripping in irony, as in, “There is not a thing wrong with you, so why don’t you just cut the crap and deal with life like everyone else?”)  My current favorite is to launch into a discourse on how having a genetic defect in your collagen actually causes you to look young (it does) because the wrinkles mainly stretch out.  (Bummer that you don’t live long enough to laugh at all your elderly looking friends, but still….).

Everybody gets tired.  I get tired….of your stating truisms.

You’re just having a bad day.  Well, hell.  I have bad days a lot more than I care to count.  I particularly enjoy them in the middle of the night, when it feels like my hip joints are breaking, so I am afraid to roll over, yet have to roll over, or I’m afraid they won’t move when I wake up.  Just like you, I’m sure.

It must be nice not going to work.  I have to admit that I like being able to write, read, and paint.  But you have to understand that this is the booby prize for me.  I studied so hard to get my Ph.D. to be a college professor because I loved what I did.  It was my life, and I thought I would do it forever.  It breaks my heart not to do it still….but I dissociate myself from that pain, so that I can carry on and be a happy person.  Writing and reading both are very difficult for me anymore, painfully slow.  I am aware that its a gift that I can do them at all, and that I can learn to paint.  But it’s not nice.  

I wish I had time to take a nap.  Oh really?  I wish I could lie down and not fall asleep.  I wish I did not have perpetual exhaustion.  That’s such a self-centered thing to say to a sick person.

…If you’d get out more.  More than what?  The more I get out, the sicker I get.  The one thing a smart  person with chronic illness learns is her daily capabilities.  I’m good for one main thing daily.  Then it’s a nap, or I am sick all night and for several days beyond.  My last three experiences with pushing my tolerance have landed me in the hospital, which is its own fresh hell.

You’re just getting older.  You are too.  How do you feel?  Do you have all my symptoms?

If you’d get more exercise….  Well, if you read anything I wrote about physical therapy, hopefully you know what I would say to you about this.  Normal people make progress in six weeks of physical therapy. But you aren’t talking to a normal person.

It can’t be that bad.  Um.  For, please.   Are they _____-ing kidding?  Anyone who says this, I wish my disease on.  Did I just say that in public?  Holy smokes.  That is a pretty harsh judgment.  None of you would ever have said that anyway, right?

You’re just depressed.  Oh my.  I just had to erase a line of invective.  I have heard this one from people as illustrious as my esteemed psychiatrist, my mom, and Dr. Mean (of 365 Days fame).  It feels like the ultimate sock in the gut to hear someone say, effectively, “You’re crazy.”  It took an explosion in my leg to convince others that I wasn’t crying wolf.  By the way, I had plenty of symptoms of depression, so they thought they were doing the right thing. And yes, I have been depressed, but that was the result, not the cause of my illness. It seems to me that one keenly logical response to what I have been through might have been to become depressed.  End of story.

There are people worse off than you. I am guilty of harping on this one to myself, or of its ancillary, “It could be worse.”  Truisms.  But I’m okay with them.

You’ll just have to tough it out.  This one makes me see red–in the tradition of the cartoon character bull’s eyes turning red and exploding in a rain of fury.  Maybe it has something to do with its origins for me:  On my first Girl Scout camping trip, I realized I was going to have to unroll my sleeping bag on a dirty floor and sleep with a bunch of biatches in the same cabin. Then I fell into the Chesapeake Bay.

That was the proverbial straw:  I ordered the troop leader call home because I was not staying (can you imagine what a bundle of fun I was as a child?). Guess what my dad said? “You’ll just have to tough it out.” I heard that a few other times when it would’ve meant the world to have help and support instead. So that sentence just means all kinds of fierce madness to me. Why would anyone say it to someone who is sick?

You just need a more positive attitude.  HAH!  Well, hearing this from someone who isn’t sick makes me laugh, certainly!

This too shall pass.  They can’t be serious when they say this.  It is not going to pass, unless they mean my passing on.  Hah!  Now I’m really laughing!

Well, so I thought that was worth a few laughs–maybe enough laughs to get me through sleep tonight and another session of PT tomorrow.  It may be a great one, right (I say, working my positive attitude)?

Day 215. My Secret Pain Self

You may have noticed that I haven’t been posting quite as much of late.  That has been for two concurrent reasons.  I have been in the middle of writing about how fantastic my phsyical therapist is–because he is really great. Then at the same time, I have been in an existential crisis about how miserable I am because I am in pain and horribly fatigued as a result of physical therapy.

Over the weekend, I was so miserable; I had to miss doing two things I really wanted to do, and I barely un-beached myself from the couch long enough to eat another caramel rice-cake with tofutti cream cheese, honey, and cinammon (my absolute favorite GF, Dairy-free treat…but more than three of those a day will put a girl into two size 22 mu-mus, sewn together, mighty quick).

But I digress, as usual.

I went to PT on Monday and told Mike about my misery.  He was very concerned and jumped right into diagnostic mode.  At the same time, though, he reminded me that I had come in happily last week and announced that my shoulders had never been so relaxed in recent memory and that I thought we were making real progress with this body work.  I do have a vague memory of saying that. Here’s the problem:  When I am in pain, I can only think: pain,pain, pain, pain.  When the pain is over, I can’t remember or describe it clearly (without referring to journals).  Seriously.  He asked me to explain what happened over the weekend that was so bad, and I was hard pressed to elaborate.  It’s embarrassing because it sounds like I am making it up.

I think I have a dissociative response to my pain, to some extent.  On a large scale, people who have a dissociative response are really in trouble, because they are disconnecting from themselves or the world; for example, dissociative identity disorder is the present name for what in the past was known as multiple personality disorder. But a more adaptive form of dissociation frequently occurs to people in something as mundane as, say, a car accident; dissociation from the fright of the situation is gives the person a safe place to stash the self, so people often report having watched the accident occur as though they were watching it on TV. Disconnecting from the whole scene to process the deep and difficult feelings, including pain, may be the safest way for some people–like those of us with very intense feelings–to do it.

Maybe I disconnected one tiny bit of myself that day my parents walked me down the hall of my apartment building and I went to the hospital with an exploded leg aneurysm.  Without any doubt I had the sense of standing above the stretcher where I was lying and watching the radiologist tell me, “Yup!  See!  This is an aneurysm right here.”  And I looked at the angiogram with great interest, as though it belonged to that imaginary patient we always see on television. That dissociated piece of myself has undoubtedly remained….well…split.  And it has a tough time articulating much of anything, particularly pain.  I am sure that is why, on the rotten days like today and yesterday, I tend just to fall asleep.  When that dissociated part of me takes over, I’m not available for talking or thinking much, so the porch light’s off.  Nobody’s home.

There’s going to have to be a whole chapter on physical therapy in my book.  It’s complicated.

Day 230. A Bump in the Road

Still Life With Pucker

Warning for the faint-hearted:  this entry is all about whining, and not the good oak-y kind from Sonoma.

 

Doing my best not to be disappointed about being absolutely miserable from the drive back home the beach.
It was one of those miserable trips up the East Coast, an accident here, a detour there (How did they justify simply blocking off the exit ramp to 95 N in Va. Beach on the Sunday of Spring Break weekend, for instance?).  By hour two, I had already chewed my mother’s head off, and it took well into the sullen hour three and a half to realize that I was ready to gnaw off any one of my limbs to deaden the pain.
Fuck.
We left for this trip on Thursday.  Arrived Thursday night.  Thursday night I was up all night in this kind of pain.  Riding in the car makes me crazy with pain.  I thought this time would be different because I have a potent muscle relaxer I didn’t have before. Ha!  That muscle relaxer laughed at me and my pain.  So, Friday was not fun (compounded by the fact that it was a rainy day).  But I didn’t complain.  The foul weather was pretty.  There was the puzzle with the family.  Etc., etc.
Every time I go to the beach I have another reason to think that This Is The Time It Will Be Different.  But every time, riding in the car for five hours (which is the duration of the trip when the traffic gods smile on us) puts me into paroxysms of pain.  What is to be done?
This feels like an enormous bump in the road.

Travel seems like something I can’t live without.  When have I not traveled? My earliest memories are in Spanish, when I was living in Argentina.  I have been to many places in the Americas, the Islands, and some in Europe.  That is so little of the world. I was planning on traversing so much more of it: Asia, Eastern Europe. But right now, I’d be happy to make a car trip, say, to southwestern Virginia (on the Tennessee border), to visit my little brother at Emory & Henry College.

Oh puhhleeze, Heidi.  There’s more than just a hint of the whinge here. In my defense, though, it feels to me as though I whine the best and most when I am problem solving.
I want to be able to take my older brother on a trip for his 50th birthday, but what good will I be if I can’t travel?   If I force myself to travel under present circumstances, I may ruin everyone’s trip.
Mike, my phenomenal physical therapist, educates me about the neurochemistry of pain.  He says that if you have chronic pain, at the spinal cord level, your body’s neurons can misfire.  Rather than firing up toward the brain, they fire backward, releasing neurotransmitters back into the synapses in the body, which creates a hypersensitivity to pain. The more the body floods with those neurotransmitters, the more the entire makeup changes. Of course, my explanation is grossly oversimplified, and only one part of what happens, but it is an important part of the explanation.
However, the good news is that these synapses, or connections between the neurons, can be completely rewired in seconds, minutes, or hours, which means that the pain response can be entirely different by the end of the week.  In other words it is entirely possible for you (or me) not to have any more chronic pain by Sunday.
Some fascinating recent research demonstrated that patients with chronic pain in abdominal muscles lit up numerous areas of the brain in a functional MRI that shouldn’t have been lit up when they tensed those muscles. SO, when their doctors explained this pain response to them for three hours in just the language I used now, and then asked them to tense the same muscles, the functional MRI showed a dramatically improved response.
The theory behind this doesn’t argue that this is a “mind over matter” transaction, but rather that knowing, intellectually, that this process exists can help rewire the body’s neurotransmitter response.
The idea is to un-learn that pain is a threat, which is counter-intuitive. For me, that has been difficult:  I am too good a researcher and am capable of imagining precisely what sort of danger this or that pain could be.  However, I’m working on that and have it down pretty well. So this week, when suddenly my right wrist just hurts and is swollen for the first time, I’m just pissed off, rather than worried (C’mon, man, it’s my writing hand!). Clearly, it is some dumb Ehlers Danlos thing; what a massive inconvenience now to have to wear a brace for a week. But, I can’t let those neurotransmitters get me down.
I don’t know how far this will get me down the road, whether it will take me far in terms of travel downstate, cross-country or cross the pond.  I wish I had some ideas about that.  I’m hoping those issues will resolve themselves with my new resolve.
What is your bump in the road? What are you overcoming?

 

 

Day 246. Weighing the Pain Scale.

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

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

Mosby Pain Scale

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

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

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

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

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

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

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

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

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

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

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

Day 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….