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 (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 18^th 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 20^th & 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 Diary.  The author’s tag line is, “After I died, I got a whole new appreciation of life.”  That was enough to capture me as a reader.  Instead of what you are expecting—another hearts and flowers tale of realizing life’s beauty and thanking God for a fantabulous disability—Dr. Taxi Dog takes a New Yorker’s approach to life after death—darkly comic.  His discussions range from the brilliant to the artsy; today’s was Disney’s animation of Gershwin’s Rhapsody in Blue followed by some interesting info.  Be sure to check it out!

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

Day 181. All About Eve

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Day 186. VEDS Pinup Girl

Call me the Bronze Goddess.

Me, yesterday AND today.
image credit: koreanbeacon.com

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

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

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

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

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

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

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

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

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

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

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

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

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

They plump when you cook 'em.

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

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

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

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

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

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

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

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 196. Fatigue, PT, and the Pain Doc

This is a Zen Tangle - a sort of glorified brain-emptying doodle...my brain took several hours this weekend to empty.

I have to come clean about one of the troubles that caused my lengthy mental vacation a few days ago. Because I was under so much duress, pain, and fatigue from physical therapy, I ended up quitting, which felt like a combined defeat and deliverance.

I restarted Physical Therapy on the last week of January this year.  It was a familiar place, since I had been in PT for about six weeks at the same place with the same therapist around the same time last year.  I ended up quitting that time because I got infections in my legs and felt so sick and was hospitalized…it was too hard for me to keep going, ultimately.

But this time, a different doctor had ordered the PT.  Specifically she wanted to work on pain before any exercise took place.  I have knots in the trigger points of just about any muscle group you can think of, especially around my neck and shoulders, my core area, my lower back, and my legs.  That probably explains why I hurt a lot, and (at least to some extent) why I get so tired when I move around.

So Mike’s job was to defuse these little bombs all over me. Since my skin is so tender everywhere, massaging away the trigger points was misery for him; none of the standard methods worked because if he used them, I left the place in more pain than I came in with. So Mike put me on moist heat and a TENS unit (electrical shocks to the muscles) before he started to relax me, and then took the most gentle, feathery approach possible— and distracted me as much as he could.  Most of this was good.  I loved the heat and the TENS unit.  It was yummy.  And what Mike did felt good, sometimes.  And the distraction was great.  He became a pal.  I really like Mike.  He’s the kind of guy I would hang out with.

THAT IS ALL WE DID.  When I complain about PT, people envision my having to do 45 minutes on the rowing machine and another 20 on the treadmill or some ridiculous thing.  HAH!

 No, I was completely exhausted from a fantastic massage.  Mike did this neck thing that was quite possibly one of the most delicious feelings ever.  And I’m including sex in the list of possible feelings.  Seriously, though, just the act of turning over a couple of times on the table, pressing down on my wrists, lying face down (which is very taxing for me, because of my POTS), and the moving around of my tissues and my joints (particularly when he moved my hips and spine around from positional faults), required my immediate, lengthy rest when I got home.

 So, it got to the point that I was having early lunch on Tuesday, leaving for PT, then getting home at 2:30 and having to rest until 4:30 or so. Then I would be starving.  I would eat dinner, but I would be exhausted afterwards, so I would get in bed, and take my pain meds for the night.  I always have writing group on Tuesdays, which was a challenge, but we do it on Skype, so speaking under the covers about writing and doing the occasional writing exercise was okay.  But 10:30 would be it for me.  About half the time, and especially if Writing Group went late, I felt miserable on Wednesday, mainly the result of PT, so it would be a pajama day.  Then it was Thursday, time for PT again, the same rigmarole, and Friday had a 50-50 chance of being lost.  That sucked (particularly since I always have a doctor appointment on Monday and frequently have appointments on Fridays as well).  My ENTIRE week was gone.  It was very hard to make plans at all during the week.

I complained about this problem several times in therapy, and my therapist (who sees only people with chronic pain issues and knows about this stuff), said, “Look, why don’t you call your pain specialist and ask him if there is a medication he can give to help with this. Sometimes the fact that you are so exhausted from the treatment means that you are having pain from it that you’re just not sensing.  It’s a good idea to get his opinion.”  It was good advice, but my intuition was it was going to turn out terribly.  Still I made the call.

Dr. Duckweed, the pain specialist, called me right back.  His response?  “I thought I told you to make an appointment for another epidural injection.”  Me: “Um…I don’t remember that, but I can do that….” Dr. DW: “Oh, COME ON, you know what you were supposed to do! Me: (long silence) I guess I didn’t or I would have made the appointment.  But I’m really, really sorry about that.  Sorry, Dr. Duckweed.  But I am calling because Dr. A suggested I talk with you about my problem.  I have a lot of pain in physical therapy and it exhausts me for two days afterwards.  I was thinking that maybe there is something I can take just during physical therapy.…. Dr. DW:  No, you were supposed to sign up for a shot.  Me:  But, Dr. Duckweed, I get so exhausted.  Dr. DW:  If you’re so tired, go see your primary care doctor.  [bang–hangs up.]

That was helpful.

I was so upset.  What upset me most was that when I get angry, I don’t yell, like Dr. Duckweed.  I cry.  So to keep myself from crying, I got quiet.  That made me so mad.

But then I figured, maybe the guy was right, although he probably didn’t even realize it.  I should call my primary care doctor, who is smart and may figure this out. By some miracle, she had an open appointment the next day, which, if you make doctor appointments at all, you know is miraculous. Besides, I thought, maybe I’m depressed. Maybe I am so panicky and can’t handle two simple appointments per week (and a simple run-in with an otherwise very good doctor) because I’m depressed.  Yes, that’s it.

Dr. Miller, my PCP, was helpful.  She said she would give me the requisite blood test that anyone would expect her to, but we both knew it would be one of the few tests on me that does come out normal. Then, she offered to call Dr. Duckweed to try to reason with him.  She suggested that maybe it was a miscommunication, that he was not understanding the part about the exhaustion.  She wasn’t so sure about depression.  It could be anxiety, but she even wanted to table that until the immediate problem was solved.  So we set an appointment for a month in advance to re-evaluate.

Not long after I got home, she left a message—I had been on another phone call I couldn’t hang up from, damn the luck.  She told me she had talked with the cranky doc, and that he said, oh of course he didn’t understand the exhaustion part.  That’s just muscle pain.  Just treat that with Advil and rest.  Dr. Miller added her part–that if PT was giving me this much muscle pain, why didn’t I quit for the next 4-6 weeks just to see how that improved my mood and pain level.  Then, when we meet next time, we could talk about it.

Well Shit.  Um.  Okay.  I can’t take Advil (or any of its NSAID cousins)— bleeding risk and all.  And um, I know I have told Dr. Duckweed countless times that I live on a heating pad.  Resting is my life.  Jesus.  Did he never take notes on any of our visits?  But at least Dr. Miller saw through to a solution.

Thankfully, my therapist, the wonderful Dr. A., was willing to email with me about this.  We agreed on laying off the PT; if pain and exhaustion had become so central a focus, why continue?  He suggested his acupuncturist, who I called right away.

Not fifteen minutes after I canceled my PT appointments, though, Mike called me back to find out what was wrong.  He also wanted to point out that if I did go to an acupuncturist to be very careful; since I have Addison’s Disease, I am highly prone to infection.  And my VEDS makes me highly prone to bruising.  Was I sure acupuncture was good for me?  I told him I would sort it out, but thanked him because he was quite right in his reasoning.  Still, he wondered, what could I have done better, so I can improve my service.

Horrors.  The worst part of it was that I couldn’t articulate what was wrong with me, what the pain was.  I couldn’t explain why getting the best massage of my life was making me so miserable.  In retrospect, it was like breaking up with someone you really love, for some higher, greater reason.  Then, when they say, but we were so great together, and I really, really loved you, what about that wasn’t good, there’s nothing to say to dispute that.

But a physical therapist is not a masseuse.  The work this guy was doing was pretty intense.  The fact that I mistake him for a masseuse is a testament to his expertise with taking me through some difficult passages.  I don’t think anyone else could do it.  So what about my body won’t put up with it? And still more, why can’t I articulate it?

I think the conflict with the doctor arose from the same problem.  He was angry because I couldn’t give him the right information.  If I had been able to explain the kind of pain I had specifically — in frequency, intensity, and duration — he would have known immediately what to do.

My words leave me when it comes to my body.  I wonder whether it is a factor of having very poor proprioception, misguided orientation towards my body in space.  Thus, I don’t know what hurts or where, just that it hurts, all of it.  Or I wonder whether it is I try so hard to tune out the message that anything at all hurts (I do this with such great conviction, I can’t express it to you earnestly enough); it is as though I say to myself those words in the Pink Floyd song,

There is no pain, you are receding; a distant ship, smoke on the horizon.  You are only coming through in waves.  Your lips move but I can’t hear what you’re saying. When I was a child, I had a fever. My hands felt just like two balloons. Now I’ve got that feeling once again. I can’t explain, you would not understand. This is not how I am. I have become comfortably numb.

Any of my readers who have chronic pain may be able to relate to this inarticulate feeling.  Maybe the rest of you a bit?  It’s damned ironic that such a consuming feeling also consumes the words I have so freely for every other thing, and it ends up I can’t describe it accurately to the people who would treat it.

 What makes you inarticulate?

(P.S.  The Pain Doc is fired as of today, and I see the acupuncturist for Medical Qi Gong next week, no needles.)

Day 203. The Secret Powers of Time

So it was Easter yesterday, a really nice one. I sometimes forget how lucky I am that my family members can be mature enough to skip past hurt feelings and slights from divorces and what have you to find themselves en masse in a restaurant celebrating without tension, in fact with a lot of love, at least the way we do it. I knew it would be a good one when my sister-in-law, my brother’s ex (she remains my sister-in-law for good) called to say she wanted to make sure she had a family holiday to have the kids celebrate with us. Then, when my stepmother came in she said, “Oh, let me make sure I get a seat by Carol (my mom).” They are the matriarchs of this ragtag group.

Knowing this camaraderie exists makes me feel so solid, kind of the opposite of anxiety, which one could so easily get when all these people mix, who potentially might not get along at all.

I seated myself at the end of the table, down with the kids and my brother Jacob, who is no longer a kid. He’s the one in the picture with the horn-rimmed glasses (that’s my dad on the other side). Jake and I had a really good time talking. He’s so cool, getting ready to go to go to Prague on a study abroad trip where he will be learning about and visiting the concentration camps there and in Poland, all for a class on the psychology of the Holocaust. Makes me want to go back to college and start all over again. Ah, youth. Ah, school.

Moving on, my reason for writing today has to do with time. Actually, I’m doing a re-blog today. I encountered a video and discussion on the secret powers of time and was struck by so many points. First of all, just the notion of the secret powers of time seems so relevant to the overall theme of my blog. The idea that time has power over everything we do is extremely poignant, for someone who may be counting down the last 200 days of her life.

Not only that, but also in my doctoral research I was strongly interested in the concept of place; the discussion in this reblog offers a compelling argument for the social and moral reasons for the intersection of place and time.

I’m not doing this blog entry justice by hinting around at its contents. Below is a link. If you take ten minutes to watch the whole video, you will not regret it. I want to know what you think, so I will be looking for your comments: this means you ——–, ———, and ————. I could name names, but I won’t. You who never comment but have so much to say, do share your wealth of wisdom.

Just don’t use the excuse that you don’t have time.

The Secret Powers of Time

Day 207. What to Say to Someone Who is Chronically Ill

 What to Say To Someone Who is Chronically or Gravely Ill

A few firsts: People who are sick, particularly the ones who aren’t going to get better, make many of us uncomfortable. Some visitors are squeamish because there’s an unconscious fear that even a genetic illness will be somehow contagious–they just prefer not to be around “sick energy.” It’s okay to get in touch with your own feelings about this sense.

Visitors are uncomfortable as well because those “hang in there because you’ll soon recover” kinds of comments we all have been taught to bring to the sick room simply are not appropriate with someone with a lengthy illness.

 Even if this is someone you have known for a long time, and maybe have had easy conversation in the past, perhaps suddenly you find yourself tongue-tied because she is different. There she lies in the bed, small and afraid. What the hell is there to talk about then? Or the co-worker who you shared an office with suddenly is in a full body cast. He may not be able to return to work and he’s only 45. What to say?

While things may seem different on the surface, remember that the essence of the person you know and love is still the same. Those changes and shakeups are massive for the person who is ill as well, so the biggest favor you can do is to be yourself.  If you are the kind of friend who is serious and always talks politics, then maybe that’s what you’ll want to do.  If you always tell each other jokes, well, then by all means, tell a few jokes (but try to leave ones about sick people out). Let your presence open a window and let a ray of sunshine in the room.

As you do it, know (or say) these things:

1. There isn’t anything TO SAY. Know that there is nothing you can do. No one expects you to, either. If this really worries you, ask yourself who made you so important? It always cracks me up how a visitor can walk into situations where someone is sick, where he or she intends to help, yet ends up drawing the attention to him or herself by wailing: “Oh, I just don’t know what to say, Frances…..I just don’t know what to do….”.Okay, I have an idea for you, then: Stay home. If you can’t figure out how to act or talk, then stay home. Seriously. Figure out a sentence or something that you can contribute during your visit so you can stop that silly act. It’s not about YOU.There’s a lot of freedom in this hard truth. There is nothing you can do to make the person better. Leave that to the healthcare experts, unless you are one: one thing that becomes extremely tiring is when people second-guess the medical care the sick person is getting. Sometimes he will ask a good friend’s opinion, but otherwise, leave the suggestions alone.
2. Walk a mile in my shoes. Think about what YOU would want to hear if you were the one with your foot in the air.It’s so hard to know what to say when you can’t feel the pain or make it go away, and you wish you could (you can tell your friend that you wish you could make the pain go away, if you mean it, but only so many times). Instead, imagine yourself in that chair with your foot up on a handful of pillows and feel the electric nerve pain (get way cranky from it, too). Now, what do you want to hear from people? I’ll bet you will think of something nice, straight from your heart.If you really did put yourself in that place, it may have occurred to you that in that cranky space, you don’t want to hear too much of anything. Tell a joke (maybe a short one). Do something you would normally do as friends: watch a movie, eat popcorn, gossip about other friends, play a video game, play blackjack. Whatever. It doesn’t need to be momentous. But when you don’t feel good, too much of anything is exhausting.
3. “Is this a good time?” (better yet, make very sure to schedule your visit). Sick people have trouble sometimes with drop-in visits. Sometimes they have trouble with scheduled ones, if their bodies aren’t cooperating. Make sure to ask if it’s a good time, and offer full forgiveness for rescheduling.
4. “How are you?” This is just fine, as long as the visitor says it in just the same way he would say it to another friend, and not in a worried tone with concerned eyes. Once again, walk a mile in my shoes. How would you like people to get all worried and say, “How are you, old chum?” forty-two times a day? But somebody coming in and saying, “Hey! How are you?” all cheerful might really cheer a person up. It gives the sick person permission either to talk about his illness if he needs to, or wants to, or just to gloss over it, if he don’t feel like it. Take the hint from which way he heads on that one. Got it?
5. “I understand if you don’t feel like talking about being sick.” Seriously. There’s no …but… after the “sick” in that sentence. Throw that sentence in any time the conversation gets personal. Please don’t “pump” for information. Your need to know is not more important than the comfort of the sick person, which is why you came in the first place.
6. “Hey, I brought cards (Yahtzee, Jenga, whatever) with me. Are you up for a game?” I love this. It takes all the pressure from the visitor (whew!) as well as from the sick person at the same time. Of course the sick person can always say, “Sorry, I am not up for that today.” But you still look really cool for having thought ahead and brought something fun to do. If you do end up playing, though, be prepared for play to go slowly, and be understanding about memory errors and the like. Whatever happens, sometimes the comfort of game time allows the sick person to open up and talk about what’s bothering them. Listening is all you can do. Remember, there are no solutions to what is happening.
7. “I’ve got a coupon for a free car wash in my pocket. Can I take your car for a wash?” (You may have to stretch the truth on the existence of that coupon, but it will be for a good cause.) Getting things done for someone with a chronic illness like Rheumatoid Arthritis, Fibromyalgia, Traumatic Brain Injury, Ehlers Danlos Syndrome (or any of the many chronic pain diseases) can mean that their day can last longer. I know that I am good for one event every day. My exhaustion tolerance allows me to handle driving, getting out of the car, dealing with whatever is there, and getting back in the car, one time. Then I’m finished for the day. When I do it twice in a day, I’m usually out for the next day or two. I am sure I speak for many when I explain my situation. So, by doing something that is relatively meaningless to an able-bodied person, it’s almost like creating a whole extra day in the week of the chronically ill person.
8. “Did you get an invitation to the x party? I’m going, and I’ll give you a ride there and back. I’d be happy to leave whenever you want to—in fact, I wasn’t planning to stay long at all.” I learned this from a friend of mine. If it weren’t for him, I wouldn’t get  to parties at all. Getting ready was challenge enough; driving downtown, finding a place to park, etc., etc. were challenges that seemed beyond my abilities. So when my friend, Jarrod called and offered to help, I started being more social. (Other friends followed suit.) Offer to help a friend get somewhere fun.
9. “What’s your favorite movie/book/food, etc.?” It’s great to bring over some fun thing to eat or do, which you can leave with the person after you’re gone. I still have great movies and books people have brought me when I have been very sick and hospitalized. Take care to find out about food allergies common among the chronically ill. When I was in the hospital for five weeks, people were so kind and found out that I couldn’t have flowers in my room, so they sent Edible Arrangements of fruit that looks like flowers.  Yum!
10. “This has been lots of fun, but I have got to run.” Huge mistake people make:  thinking sick person equals lonely person. When I come I am obliged to stay all afternooooooon. Oh, please don’t do that to a sick person. Here is the rule: Don’t stay too long. Don’t stay too long. Don’t stay too long. Have one conversation, maybe let the subject change once.  That’s enough, unless the person asks you to stay longer, or if the game is taking longer and she is enjoying herself.  You can ask, “How are you doing?  How is your energy level?”  But speaking for myself, it is very difficult to be honest—or to assess oneself properly.  A chronically ill person who is having a good time can easily miss the signs of exhaustion. After an hour or so, suggest that you can come back and finish the game another day.  You’re a great friend for coming to visit!

Related articles

• Day 210. What NOT to Say to a Chronic Illness Sufferer (heidiwriting.wordpress.com)

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.