Day 5. Go Ahead, Murder Yourself.

Murder!

Join me in committing a murder.

I’m asking you to be accessory to a crime; I’m also asking you to commit your own murder(s), most likely plural.  Most likely we will be joyful afterwards.

The idea of having 5 days left to live is abstract.  As you know, I don’t intend to die on 11/13/12.  But having to confront the idea of dying from so many directions this year has brought me to consider it from an entirely different perspective, one that finally put me in a powerful position over the last several weeks.

What if someone, or more accurately something, does die, but (as is true with vegan dinners) nobody gets hurt in the process?

What if the 13th becomes is a deadline for murdering, or killing off, the parts of ourselves that are unhealthy, or that aren’t serving us well anymore. I don’t anticipate taking off limbs, or even eyelashes, yet in the process we will chip away minute parts of ourselves, parts that don’t weigh any more than an eyelash, small enough not to cause injury, but large enough to show slight differences in character in their absence. These distinctions, for example, would cause the new “me” or “you” to react entirely differently were a new doctor foolish enough to assign one of us an expiration date.

Think about it.  The idea of killing off yourself in this way becomes appealing, right?  I’ll start.  Then, I want you to jump on.

Here are ten pieces and parts of me that I will murder over the next five days.  Won’t you join me?

—  my rigidity, which might be termed my “my-way-or-the-highway”-ness as well as my obsessive nature.

— my difficulty with staying with any single task until it is complete.

—  my tendency to look up the truth on the internet during family discussions, unless that’s what we seem to want to do.

—  my tendency to accept the first assessment the doctor makes as THE WORD, or THE TRUTH (the replacement for this tendency might be a mixture of the above tendency, looking it up, with consulting second opinions when necessary).

— my tendency to obsess over unnecessary fine points, frequently to avoid dealing with the crucial.

— my propensity to want things I cannot have.

— my selfishness.

— my tendency to worry about everything. 

—my poor social skills (esp. at parties when I don’t know anyone).

 — my impostor complex.

 My list feels like the ultimate rough draft, as though it would take 100 or more list entries to approach the topic with any real seriousness.  But if I am truly to jettison, to murder, my obsessive nature, I must commit this murderous assignment, take its tenets seriously.

f about you?  Has this blog made you think about making changes year (or do you need to go back and start reading from Day 365 to understand what I’m talking about?  Don’t be intimidated by length; I wrote nowhere near 365 entries, or even nowhere near 100 entries).  What parts of yourself will you murder?  Why?  Let’s’ talk about it.

Day 13. Trick or Treat? I’ll Take the Treat, Thanks.

Everybody was decked out in orange and the black yesterday at the doctor’s office. Where else would I celebrate Halloween? 

My mom and I were hoping for a very simple re-acquaintance audience at the new Vascular Surgeon, Dr. Cameron Akbari’s, office at Washington Hospital Center. He is not getting a nickname because my instinct tells me he doesn’t need one, kind of like Dr. Francomano. Dr. Akbari is such a lucky find. Tonight I am trying to figure out how I feel about what happened, and if my legs didn’t feel like a hurricane is exploding the power lines of my nerves everyplace, I would be kicking myself.  Why didn’t I go to him for the last three years, instead of those blockheads at the Johns Hopkins University?

I actually met with Dr. Akbari three years ago because my primary care physician recommended it, since, if the worst happened and an aneurysm ruptured, my doctors at Johns Hopkins would be no good to me an hour away (and that’s with no traffic).  Little did I know at the time that they would be no good to me even before the worst ever happened!

Seeing Dr. Akbari again helped take the edge off my worries; his easy-going, kind presence breaks all the stereotypes about vicious, shark-like surgeons. It was particularly nice to see him when I didn’t urgently need him! But let’s not let denial take over: I was there at the behest of Dr. Dreamboat, the pulmonologist, who wanted someone to have a look at the results of my recent Brain MRI/MRA, which I spoke about in my last post. I explained to him that I had a Dissection in my Carotid Artery, a sort of aneurysm that isn’t as severe as the kind I have in my belly, or the one I had in my leg, yet worrisome nonetheless). I had sent the paperwork in to Fairfax Hospital and called ahead on October 8th to be sure that both the report and the disk with the images would be sent ahead of time to Dr. Akbari, so that he could make a considered diagnosis.

Well, for my first trick or treat of the day, I learned that stupid Fairfax Hospital didn’t send the images of the MRI exam I had while I was in the hospital. Trick. Upon learning I didn’t have the images, most doctors would have sent me home and said, “Come back when you’re prepared.”

STILL, I was capable of explaining the issue, right? I told him I had a dissection in my left Carotid artery, enough information, I suppose, to get the ball rolling.

Meanwhile, Dr. Akbari’s nurses called Fairfax Hospital and got the report. Treat. While we were waiting, he sent me for a sonogram of my carotid arteries, so he could have a more immediate view of the dissection. The double treat was that the result was negative.  Or does that make it positive?  The woman who did the ultrasonography was an M.D., super-competent, so it was one of those (unfortunately) rare times when I was able to feel very secure about the results, which indeed were beautiful.  Not a thing wrong.

“Still, there is one thing that could be wrong,” she explained, as I sat up wiping off the warm sonogram goo from my neck.  There is something so….I don’t know….degrading about those moments sitting up dripping with sonogram goo. It is a feeling, I suppose, unique to those who have had a sonogram of the head, neck, or heart. “The problem is that the Carotid Artery doesn’t just begin and end in the neck; it shoots up into the brain, so if they saw a dissection, it could still be in the brain, and if that is the case, I wouldn’t be able to see it with a sonogram.”  Oh….Trick.

Sure enough, after I returned to Dr. Akbari’s office, he was able to read the Brain MRI report from the hospital. While he was still smiling his dazzling smile, it had taken on a note of the “I’m speaking to an idiot” about it. So he says, slowly “You didn’t have a dissection in the Carotid, Heidi.” Trick. “This is a pseudoaneurysm in the brain. And the trouble is, my expertise ends at the shoulders. For the brain, I have to refer you to a neurosurgeon.

Trick. Trick. Trick. 

Tricks are for kids, aren’t they?  You know the ones I mean, the sweet little ones with the shaved heads who look cute on telethons?  I wouldn’t look cute after brain surgery, with a prickly, shaved, fat head and a moon face.  Good Lord.  This isn’t looking good at all.

 I said to myself, “I’ll take a treat, please, God.”  I don’t want to point out the dearth of treats in my life at the moment, people.  I hate to bitch.  I haven’t been writing about the blood thinner I inject into my fat stomach every morning now and the related side effects that are not pretty in any way at all.  In the way of the North American culture of the 1950s, since I have not had anything nice to say, I have not mentioned a word at all about the blood-related messes I undergo. Use your imagination. I feel like I have a daily visitation of the stigmata.

Here’s the story with the aneurysm.  Turns out that between October 21st, when I posted last on this blog and got it right (about my pseudo-aneurysm) and October 31st, when I went to see Dr. Akbari, I completely forgot my diagnosis. That is, it went from pseudo-aneurysm to dissection in 60 mph or less (this hyperlink has a list of definitions related to aneurysms; to read about pseudo-aneurysms and dissections, scroll down to page two in the file). Perhaps I am being hard on myself to expect to remember the difference. It is fairly esoteric. Yet, I find myself frustrated when I “lose” knowledge I had firmly a few days ago without any awareness of it.  That is particularly troubling because I used to grasp knowledge firmly and have confidence that I never would lose it; it never occurred to me that my brain would turn all hole-y and sieve-like before I even reached the age of 50!

Anyway, Dr. Akbari gave me the report, which did help me to understand, and when you read the following crystalline prose, you will understand why. This is the  radiologist’s description of the problem in my brain, along with some pictures that should help with the anatomy:

An MRA imaging of the Circle of Willis demonstrates patency of the intracranial Carotid Artery. There is a broad-based outpouching near the junction of the petrous and cavernous segments of the internal Carotid Artery on the right, protruding anteriorly, suggestive of a pseudo-aneurysm.  Mild fusiform dilation of the contralateral internal Carotid Artery is identified on this level as well.  There is also mild fairly fusiform dilation of the cavernous segment of the internal Carotid Artery on the right.

 So, to split hairs, I was right about the dilation — a mild dilation does exist on the right side, but it is only a minor problem as compared with the patency, or the sort of bubbling out, of the intracranial Carotid Artery and the internal Carotid Artery.  But the end of the report (this is always titled “Impressions”) summarizes the “vascular abnormalities,” and then, to conclude, points out “There is no stenosis.”  When I looked up stenosis, I learned how important that statement is: it means there is no plaque in the arteries, no fat in there (no prime rib, no bacon, no cheddar cheese, pork roast, or, most certainly, no turduckey). When that is present (particularly with the previously described vascular abnormalities), the potential for stroke is high. Good God!  That is all I need.

Good luck, meat eaters!

The plan now? I have to make an appointment with the neurosurgeon (after I finally get a copy of the MRI/MRA images).  However, Dr. Akbari wouldn’t let us leave without saying a few words, and when you read them, you will understand why he didn’t merit a nickname:

“You are not a walking time-bomb, Heidi. Listen, I do this all day, and many times a day I tell people, ‘Look this is a very serious condition, and you need to be extremely concerned.’ That’s not what I am saying to you. Believe me. I would say that if it were true.”  I was so grateful for that comfort! “Now,” he added, “that isn’t to say that you do not need medical care. It is important that you see the neurosurgeon to find out whether you need a procedure, or how he wants to handle it, but this is a small thing.”  

Treat. I think.

Frankly, I was glad to take down the Halloween wreath this morning and put away the Halloween socks.  I am hoping that this year’s tricks are behind me and that I’ll be living in Treat City until my birthday….and beyond.

How did you spend your Halloween?

Day 24. How Are You?

“So, how the hell are you, anyway, Heidi?”
“How have you been?”
“How do you feel?” (groan, eye roll from me.)

Time has been tick tick ticking away, friends.  My days depreciate.  I can feel drops of time drip past me, like silvery mercury flux, plopping, dripping medication from my IV bag.

According to the Ehlers Danlos Syndrome “genius” at Johns Hopkins, I have fewer than 3 weeks left to live.

I spend my days pretending I am not afraid.

My location has contributed to this mix of issues. Maybe you’ve wondered where have I been?

How are you?

I will tell you:  Little things bother me. For example, I am asked all the time: How are you?

You probably are as well, but I’ll bet the rent that your answer is in no way as complicated or as angst-wrought as mine, as exhausting. I am tired of talking about it. What can I say in response to the question?  I find myself stuck when someone asks.  Do you really want to know, or do you want the standard response, “Fine”?

If I tell the truth, I am complaining, even potentially worsening or lengthening my illness, since many people believe that talking about it perpetuates the sickness; if I don’t, I am furtive, suspicious, hiding something, not explaining my behavior…I am keeping it in, and thus deepening my own illness by not being willing to explore it. I feel as though I am in a stasis of damned-if-I-do-damned-if-I-don’t, though more accurately it’s dead-if’n-I-do, dead-if’n-I-don’t.

How am I? Well…..

Lungs Like Luftballoons

Sing with me: “99 Red Luftballoons….” If you don’t know the words in German, just click the link above (Lungs Like…) and hum along with the song.

You may remember that I have these pulmonary embolisms, the blood clots in my lungs.  So I finally went to get my lungs checked out by a pulmonologist, Dr. Dreamboat.  He turned out to be FANTASTIC.  It also turns out that PE’s (swanky medical slang for pulmonary emboli) are a genuine medical emergency. He put me in the hospital for a week (oy vey–there’s a whole post coming on that), horrified that the geniuses at Johns Hopkins would not have done that immediately (or directed my doctors here to do so) six weeks ago.  (Parenthetically, I should point out that my brother has checked me out and been not overly concerned.  He deals with pregnant women who frequently get PEs because their blood may have a tendency to clot more frequently than usual.  He said he can recognize when a person is “crashing” with PEs, meaning someone who is on a rapid course downward of shortness of breath.  However, he lives two hours away and is really busy.  Unfortunately, I am not rich enough–yet–to hire him as my personal 24-7-365 doctor.  But I’m just sayin’, he would not have allowed me to “crash.”)  Even so, I felt hoodwinked by Hopkins doctors; their negligence could have cost me my life.

Anyway, I am glad I did some research and found someone great here. Dr. Dreamboat is a Pulmonologist, a lung expert who deals with the intricacies of this disease, and by the time I got in to see him, I had begun to have some fairly consistent shortness of breath, which felt to me like my asthma had suddenly become quite serious.  What else could I compare it with?  I had no idea that might be serious. The fatigue, too, had become just overwhelming. “No wonder!” I kept saying, when he finally diagnosed me.

In the hospital, they performed numerous tests on me and put me on IV Heparin, a blood thinner, right away. Blood thinners are good because they dissolve those Luftballoon clots in one’s lung quickly. However, for someone like me, whose skin bruises and rips easily anyway, taking a blood thinner has the potential to be hazardous.  In my last posting, I described walking into my living room end table and the damage it did to my leg. It was a blood bath, and that was before the blood thinners.I can’t imagine that accident if it were to take place now. Not to mention, it took place five weeks ago, and the wound is not even close to healed. I don’t dare ask what happens if I were to need emergency surgery.  My brother has talked about emergency c-sections on women on blood thinners as harrowing experiences; basically, the patient may bleed out much more easily.  Yikes.

Because blood thinners have such dire consequences, my brother talked with Dr. Dreamboat for over an hour the first time, debating the properties of the various blood thinners.  He pointed out the another critical variable:  I react to drugs in bizarre ways. My drug allergy sheet is a page long, typed.  ONE PAGE.  So, the first one I got was that IV Heparin, pretty standard stuff for a hospital patient who needs anti-coagulants.  I didn’t complain, but as soon as I began taking the medication, my thinking became fuzzy.  All I did was sleep in the hospital. I mean, wake up, take a sip of water, and go back to sleep.  I didn’t call anyone or communicate much with my family.  How embarrassing, too, when my mom came and when two girlfriends came, I couldn’t keep my eyes open while I spoke.  I felt drugged.  This is how drugged I was:  My mom brought me my new iPhone so that I could set it up and play with it, but I could not keep myself awake long enough to sustain the thought process involved in doing it.

Washing Windows

Thank goodness they found another aneurysm — a pseudoaneurysm — on my carotid artery (the hyperlink on psuedoanuerysm is extremely helpful; alert readers might be interested to note that it is written by one of the world’s experts, if not THE expert, in vascular surgery for VEDS people.  I respectfully refer to him here as Dr. Mean, who bestowed the expiration date on me — thus Day 24 today.). Well [shiver], typically I wouldn’t be so joyful about having yet another aneurysm.  But my mom reminded me that I knew about this one; I find it described in one of my first MRI reports in 2008 as a having beaded appearance, as though I were wearing a string of pearls up the side of my neck.  But that finding was considered insignificant.  This time, apparently, it’s large enough to be noticed. Not a big deal, in comparison with blood clots on the lungs, and the aneurysms on the Superior Mesenteric Artery — just under the aorta — and the ones on the Renal Arteries, but just another in the long list of potentially fatal illnesses I seem to be collecting.)

When I read Dr. Mean’s definition of pseudoaneurysm (and its treatments), just now, the seriousness of it made me want to vomit into my shoes.  Times like those are the tiny minutes that remind me I really am going to die early, and all those people whose Uncle Bobby Joe who had VEDS and lived to be 72 didn’t have the kinds of aneurysms I do.  The reason I don’t encounter older people with lots of aneurysms is because there aren’t any.  Don’t worry, though.  It’s been a long, long time since I have thought about this.  And I have to let it go right away.  It’s like being a window-washer on a high-rise.  I have to remember not to look down.

So back to the blood thinner.  They took me off of the IV Heparin prontissimo once they saw that problem on the carotid.  If you have a rupture on the carotid artery, well you can read here about what happens (scroll down to the middle of the page, where it talks about the “Carotid Cavernous Fistula.” UGH.)  Now, thanks in part to my brother’s lengthy negotiations with Dr. Dreamboat, I have to administer shots of blood thinner into my stomach every morning…for six months. That sounds awful, but it is extremely mild, the mildest of the anticoagulant choices.  Still,  I feel mush-brained, just different from before. This sort of side-effect is not listed in the flyer (or on sites like rxlist.com).  As usual, my response is “special.”

Lovenox, the medication I take, is no prize. I won’t even get into the discussion about the asthma symptoms I get from it.  I just use the nebulizer and shut my trap. (I’ll say more about that another day.  This is entirely too long right now.)

Attitude of Gratitude, because Gratitude is Fatitude

All I can do now is focus on doing my best.  My best on most days thus far our of the hospital has been making my bed.  I get there on about 3 out of 5 days. Mostly, I am working on getting out of bed at all.

Will it surprise you to know that all these things combined are causing me to feel despondent? I’m just OVER complications, difficulties, wrinkles in the plans, and being cheerful about all of it:  “No, really, everything is fine.”  No it fucking isn’t.  It infuriates me. That has to be part of the reason I am not so chipper-dipper cheerful anymore, what do you bet?  Please those of you who are cheer-oriented, I do NOT require a suburban cheerup effort.  I am simply explaining that some days I want to holler, “Enough is enough, for crying out loud,” and  “I hate you!!” to this illness that opens its fierce mouth and swallows up whole days when I feel horrible, and whole nights when I pace the floor and cry.  It used to be that I could become a little upset, but then the voice of reason inside me would eventually bring me back to cheerful stasis. Maybe my problem is that I don’t hear the constructive echo of a resourceful voice inside me anymore.  I mean, damn.  How many curves in the road can a girl take??

Those curves in the road are dangerous whether or not I am driving:  they send me down perilous mental highways with signs that burn their images into my brain.

You will never own a house.

(whereas your friend x has already own five, and she is hardly middle-aged).

Failure!  You will NEVER have children.

You can’t remember anything! You look like a fool!

Lights will go out any moment.  Permanently.

With those I confess the true dark nights of my soul.

Luckily, the light does still come back on when the sky is blue and the leaves are on fire with red and orange.

So on days like today, when I bound out of bed with something that looks like energy, I feel true gratitude.  I’m honestly disappointed as shit that I am not coasting into my 48th birthday on a victory lap, with a load of finished paintings and more advanced artistic ability, and a completed book drafts. I can remember happy feelings about even the smallest of accomplishments, though, until I get back to the doctors (who, I probably don’t need to point out, are the ones charged with keeping me alive, but aren’t they also charged with making me feel better?).   I am afraid because of the seriousness of this last dance with the disease. I  know this has been a serious bout, because of the way this week’s many doctor appointments played out.  I visited the pain specialist on Wednesday, and when they took my history, the nurses got that quiet, sad-eyed “You’re in serious trouble” face that you NEVER want to see.  Then, when the doctor came in, he did the same thing.  That’s just a bit unsettling.

My main gratitude extends to my mom, who knows that the only cure for my kind of howling fantods of angst involves vegan, gluten-free pumpkin cake, cookies, and pumpkin cheesecake.  Food is love.  That’s how I’m holding up.  Gratitude is Fatitude.

* The doctors that I can find that are truly great are gems; I find them with a great deal of research or by recommendations from trusted doctors or other clinicians.  The ones I see are located in the D.C./Northern Virginia/Maryland Suburbs.  Please comment on this posting if you would like me to share the name of one of the great doctors I go to, like Dr. Dreamboat (he is, unfortunately, married).  

 

Day 81. Joining the Award Sisterhood

What a surprise it was to be nominated for the Sisterhood of the World Bloggers Award and the Tell Me About Yourself Award, particularly since it has been over a month since I have written.  Forgive me, readers.  I will explain in a future entry.

My friend, phenomenal writer and blogger, Michele Berger of The Practice of Creativity  was kind enough to nominate me for these awards, and I am so honored to receive such a distinction, particularly from a writer I so admire.  If you don’t know about Michele’s blog, please make sure you read several entries and subscribe. She interviews writers from various genres as well as writes her own excellent entries.  When I see her blog come in, I stop everything to read it, and prepare to take notes, because I always learn something.  So, thanks to Michele.  

The terms of the nomination require nominees to link back to nominator (as above) and to write the following:  Seven things you should know about me, and then to nominate seven bloggers worthy of the awards. Read on for more excitement.  I’ll be back to posting more this week, Girl Scout’s honor.

Seven Things You Should Know About Me

  1. I love electrical storms.  They change the electrical charge of the atmosphere and inspire creativity.  Sometimes the best writing, the best sex, or just the best sleep happens on a stormy night. Like tonight!
  2. I once ran a sewing machine needle all the way through my index finger, right through the center of my fingernail. I was nine years old, at my grandparents’ house working on a quilt. My grandfather was downstairs working at the crossword puzzle. I knew if I told him it happened I wouldn’t be allowed to sew on the machine anymore. So I just breathed slowly and backed the needle out of my finger.
  3. One of my favorite things to do, if not my supreme favorite thing to do in my world, is to hang out with my two nephews.  My oldest nephew and I like to stay up into the wee hours and watch TV. I will watch whatever he likes; at the moment it’s King of the Hill, American Dad, and Family Guy. My job is to interpret all the sex and drug humor. To a fourteen year-old. Oy.
  4. We lived in Costa Rica in 1976, when I was in sixth grade. Our school was the very liberal, 1970’s-style English-speaking Costa Rica Academy. My brother and I worked the whole first semester to earn our way into the Spanish class taught by Milagro, where the native speakers were.  It took us until after Christmas, but miraculously we did it.
  5. I just learned I have pulmonary emboli on my right lung.  If it’s not one fatal illness, it’s another, right?  Oddly, I am generally at peace at this diagnosis—even though I have a cough right now.  I have too much to do, to think about, to occupy my mind to let it bother me.
  6. My handwriting has always been terrible.  Though I have long, deceptively graceful appearing fingers, my hands just never could grasp the pencil properly to make the pencil move in the way I want it.  My first grade teacher, Mrs. Leydon, was hip to that right away.  She had the class save Green Stamps to buy me a typewriter.  When I got it, I sat in the back writing stories, while they practiced writing their ABCs.  That seemed to work out well for me.
  7. I’m a strict vegetarian (that’s vegan, friends), but I sin on butter. I just have to have it. Apologies to the cows: cholesterol is the least of my worries.

Seven Bloggers You Should Know

I have chosen to award the Sisterhood of the World Bloggers Award and the Tell Me About Yourself Award to the following outstanding bloggers:

  1. 21st Century Housewifehttp://twenty-firstcenturyhousewife.blogspot.com/ I love this blog because it is the insightful, clever, kind writing that makes me feel good and makes me think at the same time, every time I read it. Her profiles of family members (“the tall one” or “the ballerina” or “the soldier” or “Uncle Doctor” or “my fairy godsister” — who I think is me!  What a delightful title.  That, dear readers has nothing to do with my awarding her these awards.  Rather, it is her wonderful writing skills.  She has created a great family blog, with characters we want to come back and follow.  Interestingly, she also has her own genre. This is not your “Sally Homemaker Blog.”  A college professor writes it with an analytical eye, but at the same someone who is a lot of fun is at the helm…so expect to be funned.
  2. Superhero Lunchbox at http://superherolunchbox.blogspot.com/ is written by an immensely talented writer (of blogs, comedy, television soap operas, serial comedies, and the like, who should write more, more, more).  Her postings are in the form of personal essays on whatever topic that strikes her, which means they will strike us too. She is a rare truth teller in the world.  If more people knew of her, she would be president.
  3. Eloquent Scientist for Water Literacy + at http://eloquentscientist.com/ Written by a true genius, this blog translates science-ese to language we can read, so that we can follow what is happening in a serious situation with the planet’s water supply that we might call “the big thirst.”  Consider that no new water has been made since the earth was formed; then you have to begin to think, Eloquent Scientist explains, about how carefully the water you’re drinking has been recycled. Wow:  suddenly science becomes relevant and very interesting.  Not to miss!
  4. Ana Lydic for Confessions of a Recovering Analytaholic http://analytaholic.wordpress.com/ Ana Lydic is “taking imperfect action and living outside of her head,” which means that in her blog, she writes delightful essays about her slightly compulsive ways. In a recent post, she agonizes over the possible meaning over the crushed fortune cookie at the bottom of the bag of her Chinese dinner—could it mean her future is broken? Destroyed? Clearly not. Yet although she is almost home, entering the safety of her apartment is not an option; she must turn around, walk all the way back to the restaurant, and ask for a replacement. When she gets it home, she is shocked to find the cookie is—albeit whole—, like a Zen koan, a single hand clapping, empty, void of a fortune.
  5. Chronic Pain Survivor http://chronicpainsurvivor.wordpress.com/ – Her tag line is “Living life with chronic pain and making the most of each day!”  This young woman has a fantastic attitude about confronting a horrific illness, pudendal neuralgia.  In just a few minutes, she can go from feeling just fine to requiring an ambulance because she is screaming from the pain.  Just having to sit and wait a few unplanned minutes can cause that.  Imagine the suffering.  Her blog is a great read for anyone who endures chronic pain or an invisible illness, particularly those of us who want to learn how to do it with a sunny disposition. In fact, she’s a great read for anyone, because life isn’t easy for anyone, and she’s just a damn fine example of grace.
  6. Brain Injury Self Rehabilitationhttp://braininjuryselfrehabilitation.com/ Edie is a certified rehabilitation nurse, who is highly trained with a BsN who founded The Caring Children’s Program in 1991.  She specialized her studies in trauma in children; it was in the practice of her job when a violent patient attacked her, causing her to fall on her head.  It didn’t seem at the time as though a traumatic injury had occurred, so her employer, and her medical providers, did not provide her with the proper medical care.  The result was that Edie ended up having a hemorrhage that resulted in a Traumatic Brain Injury, that has caused permanent damage.  She writes a phenomenal blog that tells about the small steps she takes to live—but she is very positive, and frequently she writes about the humorous situations that occur as a result of living with an invisible disability, and they DO occur! In addition, Edie’s blog has a great deal of practical information for Chronic Pain patients to aid them in living safely.
  7. Tickalongnicehttp://tickalongnice.wordpress.com/ This is a lovely blog of a young woman who has a congenital heart disease, whose heart, clearly is ticking along nicely, in every sense of the word.  Since her lifestyle is considerably limited by where she can go, and how quickly, she inspires me with the energy she displays by keeping a garden and going out at night—and generally being clever and cheeky.

Goooooo writing sisterhood!

Day 180. All About Eve 2 — Converting to Medical Qi Gong

On the morning of my second visit to Eve Soldinger, my Medical Qi Gong practitioner/miracle-worker, I knew my mission from the moment my eyelids slid open.  It propelled me to arrive in Dupont Circle twenty minutes early.  There is no question that I can get out of bed and move quickly when I am motivated by something so powerful, so good, so so….delicious as a bakery that makes Gluten-Free, Vegan pastries.

Yum-yum gimme some.

At the end of our first visit, Eve and I had spoken some about the vegan diet we had in common.  I told her that it was tricky to find foods that were as highly specialized as my dietary restrictions required.  She mentioned that she thought a local bakery made Gluten-free and Vegan treats.  “Both?” I asked her.  She wasn’t sure, but she thought so.  She told me it was just around the corner.

That was all I needed to hear.  In fact, all week long I fantasized about potential creamy, flaky, pastries that I inhale in clouds of powdered sugar the way addicts inhale….well creamy, flaky pastries.  You must understand that for one who never gets to eat such delicacies, the urges can become reasonably faint; but when the potential to eat the foods seems imminent, fantasies can overcome.

To walk my triangle start near the M in St. Mathews. Go up Conn. Ave (not labeled; walk toward the circle).  Form the bottom of the triangle on Mass ave, and come back around on 18th St.

So I got out of my car and walked around the block from 18th Street to Connecticut Avenue; it’s one of those funky little diagonal blocks that occurs nearing a traffic circle, the likes of which we have all over the District of Columbia.  The folklore about their origins is that Pierre L’Enfant, the architect of the city, was a big drunk who frequently rested his drink on the city plans; wherever he rested his drink landed a circle.  But I digress.  (See the map.)

It was not hard for me to walk around the acute angle of the block and up the Connecticut Avenue side.  I was like a dog with his tongue hanging out, “Duh, where’s the bakery, where’s the bakery?”  Well, there was no bakery.

The sun was exquisite, the wind cool, and the sky the most perfect azure, a rare perfect day in Washington.  It could not have been a better day to walk.  Not only that, but I love that neighborhood.  My Dad & Stepmother used to live down there when I was in high school, and I have so many happy memories of walking around; it used to be incredibly hip.  Now it’s still pretty, cool store fronts.  So I kept walking.

“Duh, where’s the bakery, where’s the bakery?”

No bakery.  So I ended up walking all the way around the block.  Way, way, way too far for me.  I’m about a five-minute-r.  This was fifteen minutes.  When I came upon Eve’s building, I was relieved, excited, and in tears, all at once.

The best comparison is always the base:  we all measure up to the most common denominator, or she-nominator.  You know how you can have to pee something fierce, but somehow you manage to keep a cork in your vast keg as you ride or drive up to your building.  No matter how bad it is, it is manageable until you get to your front door.  Then, suddenly, there is no more cork.  It’s just your finger and that hole, and good luck keeping the enormous keg plugged until it matters.

Stop shaking your head in disapproval (you know who you are!).  You know exactly what I am talking about.

Well, this was precisely my misery when I stumbled up to Eve’s building— only my bladder was fine.  I just rather fell apart pain-wise.  I had had to keep it together walking around that vast triangle of a block, because once I had started the walk toward gustatory paradise, it was too far to turn back.  Then, to have begun to concentrate on the misery of the pain would have made it impossible to continue.

If you think, “Well, Heidi, why didn’t you just hail a cab?” you have clearly never been to D.C.  I won’t laugh at you.  Cabs are decorative in D.C.  They are not used for transportation, that I have experienced; mostly, they are used to soak tourists.  Until 2008, they didn’t even have meters!

Anyway, I started to cry when I got to Eve’s building, and when you’re in pain, everything falls apart at once.  I looked ahead at the week:  busy — oh God, I’ve got to go to Baltimore to see a very important doctor on Friday and I’ve probably destroyed that, and it takes four months to get an appointment with her, and the weekend is probably blown, too.  Ugh.

Eve’s groovy antique elevator cheered me up, and I realized I couldn’t walk into her office blubbering like a fool, so I composed myself.  I think now about a friend in college who always asked, “Why are you so positive???”  I used to admire her ability to be genuinely pissed off, without liking someone any less, necessarily. There is something so Wonderbread, Shiksa, deadly dull about my predictably perky, “Well How Dee Dooo, Eve, how are you?”

A cooler person would have said, Where was the &**))#(**^%ing bakery?

We did get there.  But I really did want to talk to Eve.  I like her, and I wanted to know how she was….and we had to talk first about the fact that the previous week really didn’t work.

So then I almost started to cry again when she responded to that.  You’ll never believe it: “You had a migraine?  You should have called me!  I would have fixed it over the phone!”

Really?  I wasn’t tracking so well. My “journalistic” mind was plugged by the bath of neurotransmitters involved in the pain cycle.  I remember looking up and seeing her shake her head at me earnestly as in, “No joke, fool.”  Eve is not one to be tangled with.  I’ll believe it until proved otherwise, because when you’re in my position, well, why the hell not.  (There’s more logic to my logic than this, but that’s all I had at the moment—think back to the magnet analogy I used last time I wrote.)

Finally, I explained to her about my long walk and that I was in pain.  Eve was sorry—she had used the euphemism “around the block” the way I would, in my normal suburbanite, car-fueled way, to describe the locale of the bakery.  Now she drew a map for me (for the record it is Le Pain Quotidien — like the one in West Hollywood where Margie & I ate — This one at 20th & P, where the old costume store used to be, if that makes sense to you.  You know you are old when you start defining your city in terms of where things used to be….).

Eve said, “Well, then, let’s treat this pain.”

This time when I was on the table, I wasn’t so afraid; I opened my eyes a few times and saw big hand movements above my body, bigger than ones used, typically, in a Reiki treatment. Eve spoke to me and explained what she was doing, trying to repair my energy.  She said that there was a big tear in my energy where the aneurysm ruptured, over my left leg, that the energy there is “in ribbons.”  It makes sense.

Unlike last week, she was working very, very slowly.  My body does not seem to be able to handle even the most incremental energetic changes.  That is true when we are talking about Western Medicine as well.  I don’t manage PT or anything else.  So not surprising that she encountered this in Medical Qi Gong.

Eve reported as she worked up that body that the energy over the aneurysms in my superior mesenteric artery & renal arteries is not ruptured.  That’s very good news.  We want to keep it that way.  The energy shoulder-level and above is frenetic, whereas below shoulder-level is stagnant.   That certainly describes the status of my physical ability.  I asked her if there was any reason she could find that would explain my trouble focusing to write.  She said, that the situation she had described was precisely the problem:  I am not grounded, meaning that the frenetic energy transpiring in my head doesn’t have any connection with the earth.

“So we’ll work on that,” she said.  Yes. Yes. Yes.

By the time she finished, the pain in my legs and feet had not only improved; it had stopped.  

….All this time, I have to say, I have not suspended disbelief.  I’m still thinking, well, this can’t really be happening, right? I want it to be happening, but anyone with a three graduate degrees should question this more, right?  What do you mean, “The pain just stopped.”  Wish fulfillment, Heidi.  I’m thinking that there is no way this is working….

As Eve was completing her work I continued to get a few electric shock pains on my left leg, so I showed her where they were.  She did some more work right there and stopped them. I still would give it a level 2 on that nutty pain inventory for a sort of all over electric shock readiness general misery that I was still feeling from my walk.  But the awful pain that had been making me cry, the kind that I could have expected for easily the next five days? She turned it off like a light switch.

How does that happen?  …..Well, for the most part, WHO CARES?

It was remarkable, people.  Pain control is one part of the fight.  Fatigue is another I don’t even know how to bring into this argument.

It is still staggering to me that I had the energy, then, to go do a list of stuff right after my session with Eve.  I went to Mom’s Organic Market to kill some time before I went to get my daily tan. So that involved walking a whole grocery store, and carrying two way too heavy grocery sacks.  Then I walked a couple of blocks and back to the tanning studio, and I walked up to the apartment and back for the cart, and then schlepped my groceries.  Even after I got home, it seems as though I set myself rather feverishly at completing a mountain of small tasks around the house, never sitting myself down until evening, at which time I was in some considerable pain. But I would not have been able to move past noon before, and would still be lost now from that long walk, before.

So there was hyperactive Tuesday, a more restful Wednesday because I needed it, but the pain was manageable.  Remarkably, I had another hypomanic Thursday, in terms of frenetic expenditures of work.  Then I traveled to Baltimore on Friday.  This is Saturday.  A pace like this usually puts me in the hospital.  Today, Saturday, I’m having to rest, but I’m capable of writing.  That’s because I’m still feeling Eve’s effects from Tuesday.

I have already recommended it to a cancer-stricken friend, who is in serious pain.  What better medicine could anyone take?  Medical Qi Gong has no side-effects, theoretically, although we do have to take into account the migraine I got. This is rivaling narcotics in effectiveness.

I would recommend it to you.  It’s certainly been validated and tested over many more thousand years than any modality any of us is using in Western Medicine!

I can’t wait to go back on Tuesday.  What can she do next?

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

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

Day 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 306. Looking Back, Looking Ahead

This is an idea I’ve blatantly plagiarized from the Crazy Sexy Life Blog (where you can read about Green Smoothies and all kinds of good, healthy living options and vegan food).  Kris Karr’s ideas are pretty compelling when you read her story:  Karr (who is gorgeous) had stage 4 breast cancer, which is very serious, and decided to treat herself with food, supplements, and healthy living.  Seems like she’s doing pretty dandy.

So, I liked her exercise.  Here’s my version:

2011 in Review (with gratitude)

  1. Started a Blog
  2. Said “no” more.
  3. Got to see Casey and Johnny.
  4. Wrote a lot, sometimes more than two pages at a time–a record for me in my present shape.
  5. Hung out more with friends
  6. Great CT scans! The aneurysms did not grow, and if they don’t grow again this time, I can graduate to one annually.
  7. Started literary Salon.
  8. Took a writing class with SARK (Susan Ariel Rainbow Kennedy) and met tons of friends who are writing books, too, who turned out to be better writing teachers than SARK.
  9. Spent a lot of good, happy times with my family.
  10. Kept up with my watercolors, making a couple of fairly good paintings.
  11. Met up with my oldest, dearest friend Scott, who I now hang out with regularly.
  12. Took several tele-seminars in great topics like World-Changing Writing.  They were fantastic and turned me into a full-time writer again.
  13. Got a PEMF machine; use it around 45 minutes every day.  Lowered pain meds dosage on most days.
  14. Tried to be kinder to myself.  Easier said than done.

2012 (What is to come)

  1. Join PeTA (check! done!….I know many of you will be haters because of their very public stunts:  those are the very reason I am joining.  I believe
    that PeTA’s popular culture status does more to promote veganism than any group like the Humane Society [with its obnoxious commercials].)

    Released into the public domain by PETA.

    Image via Wikipedia

  2. See Art.
  3. Visit museums of every kind once every month or two.  And just deal with the mobility issue.
  4. Finish my book enough to start sending it around to publishers.
  5. Get to see more Goddard friends like Lana, Gerard, Mary, and Christian.
  6. Go to the theater.
  7. Take an art class.
  8. Go to the movies more often.
  9. Be organized and present for my writing group, so that we can get our new ideal group off the ground.
  10. Hang out with Scott.
  11. Make art:  watercolors, tissue collage, lunch boxes.  Many media.  Make something once a week.
  12. Try not to think I’m dying right away when it’s just another health thing.
  13. Spend lots of time with the boyz (Harrison, Aiden, Greg, Jacob).
  14. Spend time with the parents.