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).  

 

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Day 300. Goodreads

Sharan called me tonight to tell a happy library story about the children’s librarian at her public library.  Librarians are all goddesses and gods (this means you Katherine Nuss and Carol Sinwell).

Sharan is in the throes of writing a children’s book, so she’s researching other children’s books, and on this trip, I gathered, looking at some old favorites.  She mentioned Charlotte’s Web, which took me on a (another) brief mental holiday.  I traveled clear back to 1970, to a winter Sunday when I was in first grade.  That day, I checked myself into the pink sheets of my bed for the whole day and read Charlotte’s Web cover to cover.  I picked it up after breakfast for what I thought would be a chapter or two, and for the very first time, for a long book like that at least, I couldn’t put it down.  I had a vice grip on it that would not release until I was utterly devastated the end when [GREAT BIG SPOILER ALERT] Charlotte dies at the fair.  And even then, I still loved the book and would have begun reading all over again at the first page, had it not been time for dinner.  We all know I have never been one to miss a meal.  Besides, my next book, The Trumpet of the Swan, awaited me, so I knew it was time to move on.

Since I was four I have been a good, fast reader.  Books, as they say, are my friends.  Or they have been, until I got sick.  As those aneurysms started growing—long before I knew they were there—it seems like someone poured rubber cement in my brain.  So the thoughts are a bit sticky.  The reading device has become slow, glue-y.  My memory?  Oh just forget it.  I don’t mean to be funny.  When the aneurysm ruptured and I had all the anesthesia—twice—well, the rubber cement turned into, I don’t know what, tar, maybe.  Thought processes drag along like mud.

However, because they are plodingly slow, I still have something called metacognition.  I can still think about what I am thinking about and learning. In other words, I still have my smarts about me. Metacognition might be compared to a ladder that I can use to climb my way out of the goop, even if it is slowly.  That’s the plan, anyway.

That means I can think about how little I can read—but, I have found, I am starting to be able to think more about what I have read.  Metacognition is helping me build ladders up and around my thinking and memory problems.  Slowly.  Frustratingly.  But it is working.

So many times I drew a picture for a student with learning disabilities and said, “This is your brain, and this is another learner’s brain.  In his brain, learning makes a straight line from point A here to point B here. In your brain, if we start at point A, there may be too many mountains for the information to get to point B via a straight line, so your brain has to find different pathways.  It will take longer for you to make the trip, maybe for a few months, maybe forever.  But you CAN do it.

Hmmm….it never occurred to me that I might offer this pep talk to myself.  In fact, let me register that I hate giving this pep talk to myself…except that it works.

Thus, I just signed up on Goodreads.com to read 20 books in 2012.  That is laughable.  Hah!  Scott, in particular, will cackle at that number, and if it were only a lifetime ago, Carlos and I would have cackled evilly at the puny number that poor Heidi was reading, particularly since I have nothing but free time!  But there it is…and I feel terribly stressed at the commitment:  Holy shit.  That’s almost two books a month.  And I’ve also committed myself to three journal entries a week, two blog entries, and one art project, as well as one finished writing project a month.  This is a LOT, people.  Well, I guess you never know what you can do until you try, and even if you fail miserably, do it with style (I don’t mean this.  I hate failure.  I will die trying).

Today I did read probably around twenty pages of prose from the book Liz gave me for Christmas, The Cookbook Collector, (only one of about ten fantastic gifts, including, incidentally, a Cary Grant film box set, which I have yet to watch…any takers for a film fest?). But twenty pages is the far reaches of my ability to read at one sitting.

There are not words to describe the loss I feel about my ability to jam through a novel in two days, or even read a magazine in a single sitting–kind of like a death in the family.  At the same time, how great is this?  I’m on a reading marathon.

How much are you reading?  What are you reading?