Day 63. Think About the Miracle of your Body

Think about how many times in the last month you have sliced, nicked, cut, burned, or grated one of your hands, fingers, feet, or even toes.  It’s easy to do.

You might become overzealous whilst humming Pavarotti as you are grating a nice, fresh mozzarella over the focaccia; before you know it you have grated your own fingertips into the mixture at the same time.

Just as easily, you could be watching a gripping film on the tele, completely unconscious to the fact that you have taken to gnawing the tension out on your cuticles, peeling the dry strips down the sides.  When you finally notice, you think, oh well, they needed it anyway.  I’ll be sure and apply hand lotion when I get a moment.

Perhaps you cut your toenails short sometimes, so they don’t poke holes in socks.  You have to chop them off straight across, taking away that icky “long fingernail” look that looks unappealing on the toenail.  A bit of the cuticle almost always comes off with a cut that shortens the nails down, but that shouldn’t matter a bit.

Chickenfeet015

“Toe-ing” the line

Yet, when you’re dealing with a chronic illness, a simple cut is never simple.  When you have a chronic illness, your body doesn’t always do what it should to fight off infection.  So that little, tiny cut is inroads to the body for all those invisible bugs that like to feast on humans.  For someone who can take antibiotic, the same cut–or one much, much bigger–would be no big whoop.

However, for those of us who are allergic to nearly any known antibiotic, the simplest little infection can be of grave concern.  A little infection in my finger last year caused me a four-day hospital stay and several weeks with a PICC line (a home IV line) so that I could take special IV antibiotics.

So, a month or so ago, I decided to correct the square toenail cut the pedicurist gave me by chopping off both corners.  When I did that, I somehow introduced a minute cut at the upper left corner of the toenail.  A couple of weeks went by and things were fine.  But suddenly, around the tiny nick became red:  this is where the average, intelligent person would introduce Neosporin or Bacitracin. While I like to think of myself as of average or above intelligence, the best I could do was a homeopathic treatment, Manuka Honey, called Wound Honey sometimes, that is supposed to have antibiotic properties. However, after ten days or so, the Manuka just seemed to make it worse, or else the infection was just going to get worse anyway.

I thought it was starting to feel funny from walking on the Band-Aid on Friday.  However, when I removed the cover, I realized the toe had swelled so much, the pad of it was suddenly quite large.  Not so good.  A quick consult with my brother confirmed my worst intuition: this wasn’t going to get better without help from a doctor.

Thus, I spent Saturday at the ER, having to convince the ebullient ER doctor/specialist that indeed I truly am allergic to all those medicines and that my toe might not look especially threatening, but I know to come to the hospital before it looks gangrenous or else I will be in the hospital for a long time.

Still….I overheard his conversation with Dr. Mycoplasma, my Infectious Disease doctor, who he was lucky enough to reach on a Saturday afternoon.  I heard Dr.  Stat’s minimization of my infection, and the half ironic/half questioning tone he used when he read off my list of allergies.

In part, it was a case of power politics:  I made the mistake of walking in trying to know as much as he did, and he didn’t like it. What business did I have doing that, he must have wondered.

Dr. Stat of the ER reminds me of the opthamological neurologist I saw last month. When he started to examine me, I wanted to warn him, so I put my hand up and said, “Wait, Dr. Looky-Heere, I have a small lesion in my right macula.”  He jumped away from me as though I had placed bedbugs into his ophthalmoscope.

“How do you know that!?” he shouted, at top voice.  “How do you know that!?”

“Someone saw it during an exam once and referred me to a specialist.  I made it my business to remember.  Wouldn’t you?”

His response was simply a rapid exhale of disgust, as though cataloging information about my own body would be a natural reason for his disapproval.

Here again, then, with Dr. Stat, I was dealing with someone who I appeared to have offended. I sat there thinking: My God, was it something I did? No, I realized after a while. It wasn’t what I did; it was what I knew. My best recourse, I decided then, was just to use what I know when I need it.  I had overheard Dr. Stat on the phone with Dr. Mycoplasma.

So when Dr. Stat finally returned to my little ER Cell, I denied him his “big man” announcement about my future.  “So, little lady.  It looks like you won’t need to be doing any time in the hospital…”

“I know! I heard! I can have one dose of IV Antibiotics here and then see Dr. Mycoplasma in his office on Monday.” I did my best not to emasculate the poor bastard, but instead to sound like it was a great, large mystery that I had happened to overhear his conversation with Dr. Mycoplasma.  “Speak no more!  It’s all great news.  Thanks so much!” I said. That way, I didn’t have to bother entering into the discussion with him about why I already knew all the answers to all the questions.

I was just happy to be able to go home and go to sleep.  Most importantly, I could give my party on Sunday.  It was the first literary Salon of the season.

To make a long story short, I got up on Sunday and although I didn’t feel very well, I got ready for my party, everyone came, and we were having a great time. Pretty soon, I stood up and asked if anyone needed something to drink. I turned around and didn’t notice that someone had moved the stool next to my chair and I turned around. Walking fast, I collided into the stool, making a loud splat.

Talk about a great way to end a party!  Thank goodness I have such wonderful friends.  Katherine became Flo Nightingale and bandaged me all up—no small feat, since the lower part of my leg already was bandaged with another, earlier injury.  When I was finally wrapped up, the bandage went from ankle to knee—as does the bruise now too. I look like I have on a black shit-kicker boot (made of bruise).  It hurts like hell, too.  On the positive side, though, it has been excellent practice for using positive visual imagery for helping with pain control, because pain killers have done a whole lot of nothing for it.

My wonderful friends also cleaned up the whole party.  (Don’t say what I know you’re thinking:  Hey, Heidi, you don’t have to work so hard to get people to clean up your party!)

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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.)