Day 351. Paint Your Pain

Heidi's Pain

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

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

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

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

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

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

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

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

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

Day 352. Bathed in the Spirit of E-coli

If I were to say to you that I had a shitty Thanksgiving, I would not, for once, be writing hyperbole.

Giant Stank-Distributor

I was all dressed up and ready to go to Melanie’s Thanksgiving Vegan Extravaganza, looking forward to one or both of her twin eight year-old nephews being my date(s) for the festivities (yes, it is that hard to get poor Heidi a date). Just so you can picture: I had the purple velvet empire waist top with the silver sequins and some grey silky pants.  No shoes or socks yet.  Was just doing my makeup when nature called….and for the record (I know this seems like TMI, but it’s important), it was numero uno.

So, the toilet doesn’t drain.  That toilet has a destructive history, so I wasn’t going to fool around.  I grabbed the plunger and, congratulating myself for being so handy, gave it a few plunges.  Well, instead of swallowing, as the toilet usually does in that circumstance, my toilet vomited, and I’m not talking just a dry heave.  I’m talking a fountain.  And it was a fountain of my neighbor’s feces, and her neighbor’s feces, and his dead aunt’s feces, and without doubt the feces of Satan himself.

As this occurred, I thought, well, shit.

Then, I thought, if I just plunge harder, this nightmare will end, but it did not.  No, the water kept running and fueling this nightmare, until there was nearly an inch of water on the floor, on my naked toes.  Taking in all that dreadful sensory stimuli, I was a little slow to get to the Water Off valve at the wall.  Once I did, I grabbed every towel in the bathroom and put it in the doorway, to block the flood, and took still more towels from the hallway closet.  Then I thought I had the flood forestalled.

I didn’t want to repeat the fiasco of two summers ago, when the whole apartment had to be re-carpeted and -painted, thanks to this same monster toilet.

Then, I set about trying to find the building maintenance emergency number.  Whenever I have needed the emergency number in the past, I have just called the building’s management office.  When the office is closed, the number is given on the recording.  This call reminded me that we no longer have a building manager; the recording referred me to the building perpendicular to mine (the one with ugly blue balconies).  So I rang over there.  That recording just said, “We’re not available; please leave a message.”

No problem, I thought.  I’ll walk downstairs.  The number has always been posted in the mailroom.  Nope.  Nothing.  So then I started pounding on neighbors’ doors.  No one was home, except one girl on the first door on your left as you leave the elevator (if you want to kick her door).  She did come near the door (I could see her through the wee spy glass), but then she just wandered away.  Biatch.

When I got back to my apartment, I walked on the carpet and heard the terrible “squish, squish, squish” of carpet soaked through the padding and then some.  By this time, the water had wicked through the padding and all the way up past the laundry room to the kitchen.  Ugh.

So now I called back at the management office at the blue balcony building. As you might imagine, I left a very kind and dignified message about where that silly emergency number might be, because there happen to be feces flying about my apartment and I need either their help or the emergency number, and I need it before Monday.  Thanks, ever so…luvya; mean it.

Then, I got out the letter from the property management company, Real Estate Services Incorporated, announcing my rent will be raised in January.  So I conveniently had that phone number.  I left my landlord a cool-headed message as well about how I felt spending my Thanksgiving up to my elbows in feces without an emergency number to call.

By this time, I had already terrorized my poor mother, who was trying to be on vacation, with two hysterical phone calls.  I might not even have noticed my own hysteria were it not for the gentle reminder from my mother: “Uh, you are going to have to get yourself together; it is going to do you absolutely NO good to wail and cry like that!”  So, you can gather that I maintained my sunny disposition throughout the experience.  Probably the only reason I am semi-coherent today is that Sharan talked me down off the ledge no fewer than fourteen times.

At this point, it was clear that I wasn’t going to make it to Auntie Melanie’s fabulous vegan extravaganza.

I had made an amazing vegan pumpkin cheesecake to bring.  I was so looking forward to the amazing feast (with no one shaking a turkey leg at me and saying, “Heh, heh, heh, how about a little turkey, there, Heidi.  Oh, that’s right.  You’re a vegetarian”).

Melanie was very understanding.  Carlos and Bob even brought me a plate of amazing Melanie food (so sweet!) later at night, as I still waited for the plumbing/cleanup service I called to clean up.  I won’t go into the details about that, because they’re too frustrating.

Suffice it to say that as of late this afternoon, my carpet has been cleaned through water extraction and a little chemical treatment.  There’s a big fan drying it, which thus far, seems to be a stank distributor.

On a more positive note, my killer cleaning mistress of the universe, Daysi, came in and rocked the deadly bathroom.  She went over everything in there with bleach five times and washed the shower curtains, including the plastic one.  It looks like a brand new bathroom that no one ever lived in. To give you an idea about how hard she worked, it took her two hours in that little room. Damn the luck; I wish I had before and after pix!

I’m going to have to deal with the building on Monday about re-carpeting.  Then, as I have confirmed with water expert Marvourneen Dolor, there is still the matter of the e-coli bacteria I have tracked all over the house.  Careful as I was, I still had to wear shoes to go up and down that hall, and into the living room. Before I figured out it was in the hall, I wore my shoes in both bedrooms. So even now if I take them off at the door, the bacteria are here.  I need to have the whole place steam cleaned.  We all know about my immune system and just the run-of-the-mill bacteria.  Oy.

Does anyone have a plastic bubble for me to live in?  I am signing up.

P.S.  Do you think I ought to report to the police a missing 3/4 vegan, gluten-free pumpkin cheesecake?

Day 357. Approximating Realism.

After Henry Miller by Heidi 11/20/11

I’m posting this monstrosity because Randy and Lana wanted to see paintings.  It truly is a rotten painting to post as exemplary, since it is not my typical style; so think of it as something you can print out for the lining for the bottom of your bird cage.

I’m reading Henry Miller’s book, Paint as you Like and Die Happy. I was trying to paint in the style of his 1950s paintings, which looks much easier than it turns out to be.  Here is one similar to the one I was looking at.

Sooo, it’s back to the watercolor workshop for me.  Today’s lesson:  it is far, far easier to approximate realism than it is to do a really fine abstract piece.  I’m going back to The Tao of Painting, I think, which has an altogether more elegant approach.

Day 358. Thanks, Dr. Katzow.

Well, it’s all over.

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

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

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

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

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

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

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

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

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

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

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

Day 363. Driving and Crying.

In anatomy, lumbar is an adjective that means ...

This is the lumbar region of the spine.

The way today went was a perfect microcosm of my life of the last 10-ish years.

Had to cancel brunch with my dad and Marilyn because I did not feel well.

Then I had to ‘just say no’ to The Scooter Store.  Let me explain.

I got ready for my quarterly appointment with the Pain Doctor.  It is impossible not to fall the tiniest bit in love with the man who writes me three prescriptions of various strengths for medications that will take the edge off of the agony — and then several more creams and nerve blocks that will keep me from hanging myself when those wear off after two hours.

So I love Dr. A., the Scooter Store had called him to make sure he knew that I was coming with a mobility questionnaire, and I had spoken to my other Dr. A about my expectations about the whole thing.  It was all set up to be just dandy. Nevertheless, things did not turn out the way I expected at all.

To avoid confusion, I have two pain doctors, both Dr. As.  Dr. A of the prescription pad, and Dr. A of the solutions, the psychologist. I will speak about him in greater detail another day, but he plays an important role today as well.

Yesterday I saw Dr. A of the solutions, and I told him that I was really having trouble with pain at night, with sleeping, yadda yadda yadda.  He asked me a good question: what did I think Dr. A. of the prescription pad would say in our appointment today. I could easily predict what he would say: my spinal stenosis is to blame. Get another one of those steroid injections in the spine.  God, I hate those things. They hurt like the doctor used a nail gun to inject the steroid (not that minute, but about four hours later). I insisted that my issue is related to my aneurysm surgery, not the stenosis (diagnosed with an MRI — L4/L5). So, Dr. A. of the solutions showed me a diagram of the nerves.  Guess what? The nerves running from the spinal Lumbar 4 and 5 connect precisely to the places I point to where it hurts on my legs. So, I stand corrected (or more accurately, I lie down on a heating pad with my legs elevated, corrected).

 Thus, I went in to the appointment with an open mind, expecting that, hate it or not, we would arrange for an injection. Nonetheless, I did not expect, when I got there, to find Dr. A. of the prescription pad, with the mobility study in hand, saying, “Look this thing is 15 pages long.  It takes an hour and a half.  I can’t possibly do this with you.  If you would like to have it done, someone in my Maryland office does it for a fee of $10 per page.”  However, he confessed: “Doctors hate these scooters because they actually make the patients worse.  In ten years, your legs will become even more atrophied than they are now.  Are you sure that is what you want?”  It is of course difficult to capture tone of voice.  Persians tend to run toward the hot side of the faucet, but it felt to me like he was giving me wise advice, brotherly or fatherly, rather than being patronizing.  I certainly do not want to be 57 and unable to walk (something he strongly suggested as he continued to speak).  And, as it is, my ankles are about as big around as your wrists.

One of the warnings he brought up, though, was that I might be unable to use the stairs soon.  “Wait a minute,” I said.  “I am not able to use the stairs as it is.”  I explained the issues I have with delayed pain, waking up in the night screaming.  I told him that after my short jaunt to the doctor today I would have lots of pain, that I don’t go very many places and that I don’t like my life very much.

He suggested that we do an MRI and X-ray of the spine to make sure there is not some sort of issue with my spine that is causing me to have ridiculous pain (for which, obviously, surgery would be required).  I remain extremely skeptical about any sort of surgery for someone with VEDS.  We tend to have such awful, lengthy recoveries.

“But in the meantime,” I asked, “what should I do?”

“Just go and walk anyway.”  I suppose I understand.  I definitely don’t want my legs to atrophy too much.  Think about it, though.  How inclined would you be to go anywhere and walk any distance if you knew of the hell to come later on (and that no combination of painkillers and muscle relaxers would touch it)?

Leaving, I had the most bizarre mixture of relief and lightness (hooray! I don’t have to deal with some nasty machine and its weight and bulk around me) along with pure frustration:  he doesn’t get how this disease affects joints, muscles, tendons to give the nastiest drilling pain fairly constantly.  It is so constantly there, I don’t even describe it to him when he asks me what hurts, so it gets left out of the treatment.  Then there is the awful nerve pain like hot electric wires fallen in the street and snapping around at the cars and the people like a fierce reptile. These are moments when all the conflicting and unfair information stops computing.  Just for a minute, or for an hour, before I talk to someone on the phone — today poor Margie had to hear me cry and whine, and then my angelic mother — I just feel like driving my car off of a cliff (like the really cool ones they have in California that plunge right into the ocean).

I have been through being disappointed and hoping I was on my way to finding a better way to manage my pain so many times, only to get to the doctor and have him hear only about 33% of what I am saying, that I am getting very, very good at driving and crying.

So, enough of the pity party.  I got home, talked on the phone (as above) and realized that I have writing and painting to focus on, and not this to worry about.  No sympathy please.

365 days. So you say its your birthday.

So birthdays are fun.  When we were teacher interns and grad school colleagues, my friend Janelle and I played a birthday game that consisted of reminding our colleagues of how many shopping days remained until our birthdays. I am sure everyone thought it was positively darling.

Ours were conveniently about six months apart, so we could spend much of the year in birthday reminders.  I was embarrassingly old when this happened (it’s never too late to have a happy childhood, right?). Besides, it felt like we were celebrating all the time.  What a happy epoch of my life! To my mind, we are never too old to enjoy a birthday.

Even today — this whole weekend, really, I had a fantastic time of it.  I celebrated and expended more energy than I remember having done in a long, long time.  Lunch out with Marvelous Melanie on Friday, then dinner out with John, Foster, and Katherine old, dear friends, close to my heart.  Saturday was lunch with my angelic Mom and Nathan, Greg and the boys. I spent so many moments looking at them and thinking that without them around me so much, I would be less of a human being.  Meeting up involved an hour-long car trip, for which my angelic Mom had prepared a blanket and pillow in the back seat so that I could sleep both ways.  I took full advantage, too, because I was tired — and I had to rest for today’s event, the monthly Salon I hold, which took the form of a birthday party as well.  I got up and made appetizers today as well (cooking makes my legs take the shape of tree trunks, but I didn’t care).

Mr. Magoo and McBarker.

Mr. Magoo is voted the 29th best cartoon of all time by TV Guide (1949 - 1983 in various shows)

Then four friends came over.  Carlos presented Pedro Almodovar’s films.  We ate a lot.  Melanie made (and framed) a fantastic picture of a crown, for me, a princess — so appropriate!  And Carlos & Bob brought me a really groovy silver briefcase, and inside it was a box set of Mr. Magoo cartoons.  We watched some of them and they are so wonderfully politically incorrect.  And Randi gave me a book about erotic art (perfect for a person who set a theme of sex and the body for this year’s Salons).  I’m not saying that the party was all about the gifts, but it was fun.

I am leaving out the list of presents from other friends and family…but they were great too.

I didn’t think much about it until now that, if Dr. Lunkhead were truly correct, this day could be the beginning of my last year on the planet.  Day 365.

Eat, drink, and play,

While here you may;

For soon as death

Has stopp’d your breath

Ye ne’er shall see a cheerful day.

From Ecclesiastes 8:15 Clarke’s Commentary of the Bible

My intention for this year is to eat, drink, and play, to paint, and to write like a fiend.  I want to make the world around me beautiful and to really enjoy what I do.  I want to love the people I do it with, to push the sick feelings out of the way, so that I can make each day exquisite.  Every day I do all of this, I will get stronger and better at it and more resolved to prove Dr. Lunkhead wrong.  I have five books in my head. These will take time. Thus, more birthdays to come. Many more.  Get ready.

366 Days. Speed.

Traveling at the speed of sound

I don’t just have one rare disease.  I have the divine gift of two.  Thank you, Jesus.

I have adrenal insufficiency, a disease that about 1 in every 100,000 people get.  Other people who play with those kinds of odds win the lottery.

The disease occurs when adrenal glands (just above the kidneys) don’t produce enough cortisol. Cortisol performs vital functions of the body, from maintaining adequate blood pressure, to slowing inflammation, to balancing insulin response, to regulating metabolism of protein, carbs, and fats.

We hear a great deal in the media about having too much cortisol in the body, which can cause a large belly and a host of other problems.  The body must maintain a delicate balance of hormones indeed since, while high cortisol levels can be dangerous and lead to cardiac problems, low cortisol levels also can be fatal, and quickly.

Before I knew about my cortisol issues, I could not get out of bed.  I would wake myself by alarm, but it was like awaking from a coma.  I always woke up relatively early in the morning. Even though I don’t have an official job, I work for a very difficult boss:  myself.  I’m the worst task master/mistress of them all.  So I can never call in sick.  I had breakfast and then while I still had the oatmeal bowl in hand, fell asleep, drooling on my chest and dozing for hours, only waking up if something particularly loud happened on TV.  I knew something was wrong, since I had already had nine or ten hours of sleep while normal people slept.

Several doctors had told me nothing was wrong; it was just pain or my medication that was making me tired, or my EDS.  Finally, though, when my leg was infected, my brilliant infectious disease doctor (Dr. William Furlong at Virginia Hospital Center) suggested a test of my cortisol level.  It was 0.2 (normal range is 6-23).  It seems that I was uncomfortably close to Acute Adrenal Crisis, which sends a person into shock; one can die easily in this condition.  For that reason, I wear a medical alert bracelet so that it is clear in an emergency that my body needs a jolt of hydrocortisone (something that a normal body produces in a crisis that mine does not).

I consulted a fantastic endocrinologist this week.  If you need one, I recommend Dr. Jason Wexler, who practices at Washington Hospital Center.  I wanted to ask him about the hydrocortisone I have to take for my condition.  Truthfully, it is speed — with some side effects one would expect, and some unexpected ones as well.  For example, the jitteriness is terrible (shaky hands, etc.); it’s awful after three p.m. when the crash comes.  Predictable as well are mood swings — the higher the dose, the more labile the emotions.  But unlike speed, it makes a person feel hungry, and by hungry, I mean gnaw off the table leg and eat the baby famished.  I gained 19 pounds the first few weeks I took the meds (at a higher dose than I am on now).  I have to stick to a 1000-1100 calorie/day diet so that I do not gain weight.  The most unseemly side effects are that #1, it can cause the skin to be extremely fragile, and #2 it can cause aneurysms to form and rupture.

Well, hell.  That’s just no fair to someone like me.  And since I have taken the medicine, I have had four skin ruptures on my legs.  It makes a girl panic just a bit, then, about the aneurysm situation.

I was worried that I was on the wrong medication (a number of steroids are available to treat my condition.  However, Dr. Wexler did a great job of explaining the way each of the steroids is metabolized, and in this way he convinced me that hydrocortisone is the best of them, since it leaves the body quickly and is least likely to have those skin and blood vessel aftereffects. That’s the best we can hope for, since it is a life-or-death medication.

Another good idea Dr. Wexler had for me had to do with my one-a-day problem.

I can only schedule one activity per day because that is all I can tolerate without being fatigued.  He explained that the dose of medication I am taking is ⅔ the strength he would give for a person of my stature.  So, I could have a few different options.  One would be to add back 5 mg.  (I don’t want to do that because I will almost certainly gain weight.)  The other idea, though, would be to add back ½ of a 5 mg pill in the late afternoon on a day when I do extra things, as a kind of a jolt.  I had thought of trying that before, but I had assumed that it would be a drain on the body and dismissed the idea.

So, I have tried it three times.  The first time I did it, I didn’t have a huge day, but I did run one extra errand.  Having the extra jolt worked, and it didn’t throw me off the next day, when I returned to the lower dose.  Success.  However, when I tried it this Friday I had different results.  I had lunch out, and then had dinner out, a very big day.  Not only that, but going to dinner with friends was a long haul on its own merit.  We went shopping at the Yes! Organic Market right next door to the restaurant after eating, which was fun.  I ended up buying two bagfuls of stuff, and then I had to carry them a block away to the car — way too much for me.  I was in terrible shape by the time I got to the car.

I was sick all night.  I think it was a combined misery of: too much in one day, too much walking, too many heavy things to carry, perhaps some food that I was allergic to.  Those variables together whipped up into a heapin’ helpin’ of pain central.  I was up all night moaning and groaning and wishing I was dead, a big shame, since I was getting up this morning to go to lunch with my angelic Mom and Nathan and Greg and the boys in Fredericksburg.  Oy.

So speed can only speed you up.  Nothing can speed you up fast enough to zip past the  pain.