Day 78. Wrinkles in Time

Time has had a tendency to wrinkle in on itself more than usual, lately.

That is the short version of my excuse for letting the weeds grow up around my blog for eight or more weeks. It also explains the wrinkle in the number of days. My reasons for taking so long to write again are legion; some are good and some not good at all. It got to the point where I skipped so many days, I could not stand to see the minuscule number I had left. What a relief it was, then, to discover a mathematics error tonight (a relief, but not a surprise). So, the sharp among you will note that time appears to have folded in upon itself and I have more days to live than it appeared….and yet it still is slipping horribly, frighteningly below one-hundred, and toward zero.

So, here I am writing again, like it or not. I haven’t written regularly for several months now for a hundred reasons. I’ll limit my excuses to four big ones here:

  1. Time slipping, slipping, slipping into the future.  When I last wrote, I returned to the blog after a long time to accept the nice blogging awards for which Michele Berger nominated me. Something about the difference between Day 121 (three digits) and Day 81 (two digits)—verged on paralyzing me. One main impetus for my starting this blog was to prove Dr. Mean, the surgeon who predicted I wouldn’t outlive my 48th birthday, wrong, to show him the diametric opposite, that I am living fantastically well. However, those numbers humbled me. Put yourself in my place, reader.  I know I am in the business of proving that idiot doctor wrong. But what if, just for a moment, he is right? Eighty-one days are not many; that isn’t even a quarter in the finance sector. I am allowed these occasional tidal waves of fear.
  2. Narrative Strategies Workshop. I was using what I learned in the workshop I wrote about (Day 121) helped me to decide that I’m not going to let being sick keep me down. So I won’t fall apart about this 81 day thing. Hell with that!  However, focusing on being a well person takes a lot of energy.  I have been really trying to do that.  I have a well mind, but I am frustrated that almost every day, my body is (so) sick.
  3. Mindfulness-Based Stress Reduction (MBSR) Meditation. I started a Mindfulness-Based Stress Reduction (MBSR) Meditation course, one that I found just as helpful as the Narrative Strategies course, though it took quite a different approach. I couldn’t understand why I was so incredibly busy.  Yet, it took my observant friend Ellen to point out how much time MBSR took. We attended a two-hour course weekly, plus read several (lengthy) textbook chapters and a handbook chapter every week; on top of that, we meditated for 30 mins to 1 hour daily. What might have been a relatively insignificant after-work investment of time for the average person for me involved every extra moment of my time, every day of the week. The ribbon of time looped in and tangled on itself. Sometimes I would find myself back at the beginning of what I had done, not having started in the least because I had not done it correctly at all (or had slept through the exercise, more often than not). Meditation is tricky like that. Still, it did—and does—help, not as much with my pain as with my stress about being ill.
  4. Suffocation by pillow, parts A & B.  

               A.    Suffocation by pillow: Pulmonary Emboli. It’s always emotional when I go to have my CT angiogram at John’s Hopkins University Medical Center, which is supposedly the mecca of treatment for people with Ehlers Danlos Center. This test examines and creates images of my arteries. It is important to keep in mind that one ruptured in my left leg once, and some “shifty” things remain there. But the issues of greatest concern are in my abdomen, an aneurysm in my superior mesenteric artery, as well as several on my renal arteries.  This is bad stuff.

When I went to see the doctor a few weeks ago, it felt like opposite day. Ordinarily, the ribbon of time for me is like a regular timeline, but on this day, it meandered like it was traveling on helium, divorced from gravity, and thus from the need to travel forward. Usually, I see the doctor, the Chief of Vascular Surgery, who is so busy I wait for hours to see her. By the time my appointment comes up, she is in a foul mood and if I have questions, she is unkind, belittles me, or tells me I should have asked the questions of my internist (when they are very specialized questions about my disease that are appropriate mainly for a specialist at one of the best hospitals in the world, supposedly, i.e., my internist—understandably—doesn’t know the answer, which is why I am seeing this doctor).

However, on the day in question, I had my scan, came upstairs to her office, and the doctor saw me immediately. I was stunned. I was even more stunned to find her in a good mood, so much so that I couldn’t remember to say any of the things I wanted or needed to.Since I had been called to her office so quickly, the CT angiogram of my body had not rendered yet. Time, as it had been doing that day, slipped off of its normal timeline. So, instead of what we did normally, she said “Let me show you last year’s scans instead.” Speaking very solicitously, she brought out the scans, mentioning that last year she  had only ordered a scan of my legs (meaning they had omitted my abdomen, where the most dangerous aneurysms are!). “Let’s look at your legs. See, you can see just these little clots. Nothing to be worried about at all.”

I saw dark spots there, none very large, but lots of them; I counted at least six before she took the image away. They were dark blotches, like irregular inkblots made by Sharpie markers, in the crotch where a  small artery, it appeared, had branched off. Nothing to worry about, she assured me, and from the tone of the meeting, I felt not just comforted but encouraged. Okay. We were being so positive; it never occurred to me to question why they didn’t scan my abdomen last year!I told her that I was so disappointed not to see the present day’s scan because I had set a goal that the aneurysms would be smaller, if not, the same size. She said I looked great, and that was such an admirable goal; she couldn’t wait to call to me to share in my good news. Then, seemingly attempting an informal girlfriend-y tone that seemed entirely inappropriate, she said things like, “So, what is up with you?” and “How have you been?” It was just out of character. Incidentally, she never even waited for my answers.

The doctor waited until the end of the week to call me with results. Actually, she called me back that very night with the results: The message was, “This is Dr. Deadbeat. I have your records. Please call me back.” Not good.  Had it been good news, she would have left a message.

I called her back many times until Friday afternoon, when she finally got back to me. “Emergencies” had kept her occupied. Coming from a medical family, I take a cynical view of such emergencies because I know that sometimes what constitutes them can mean running to the DMV, UPS, or talking to one’s sister on the phone.

However, she did call back finally and tell me, “I have good news and bad news.” If possible, time stopped doubly here. Why would a doctor say this? I wanted to rip her lungs out and just get to the negative first. “Just say it, just say it, just say it, just say it.” I didn’t speak these words aloud, of course. I said them in my head, hoping some part of her would hear them. Soon enough, she continued, her way.

“The good news is that none of the aneurysms grew. Now, the bad news….Heh-heh!…. Last year when we didn’t take pictures of your abdomen, we probably missed this … “ The first sentence took about 45 minutes, whereas the second sentence took all of five seconds. She went on, though. “We probably missed the pulmonary emboli in your lung. Those are small blood clots that have reached your lung and settled there. They’re probably nothing, but you will probably want to consult a pulmonologist, or see your primary care physician first. She can advise you about how you should proceed.”

I must admit, I was shocked and extremely disappointed. I believed that I had “thought” away my disease and disease processes. So now this diagnosis really trifled with my new narrative of being a well person. And here’s another new disease that could kill me.  could easily be the thing that kills me.  I am humbled. Again.

I am also furious at this doctor. So much of what she did was shady.  She should have alerted me immediately about the clots in my legs. Those could have been treated. The syndrome is that bloodclots in the leg mean a DVT (Deep Venous Thrombosis), particularly for someone like me). Part of that syndrome is that the clots can come loose and lodge in the arteries of the lung and cause all kinds of trouble if they cut off blood supply. That’s called a Pulmonary Embolism.  I got two of those.  So if she had been on top of things, I would not have had two of those.

It makes me wonder about how “nice” she was being; I wonder whether in fact she did see the images and wanted to chat me up just to make me feel like she was her gal pal? Her behavior was so strange that that is the only explanation I can decipher. Someone of her stature has no excuse for overlooking that. People wait for months or years to get to see the doctors at what some people call one of the finest hospitals in the world.  I wonder what kind of care they are getting at just an average hospital.

I know that I have routinely gotten better care at Washington Hospital Center in D.C., at Greater Baltimore Medical Center, and at Virginia Hospital Center.

Anyway, no wonder I have been feeling like I’m being suffocated by a pillow.

  1. 4. Qi Gong & Lungs. Eve Soldinger, my Qi Gong Practitioner diagnosed this weeks before the CT Angiogram.  Several times, she asked me what was wrong with my lung as she stood on my right. “Lungs?” I asked. “That has to be asthma.  Now and again I am short of breath and I have to use a rescue inhaler.  If it gets out of control, I have to use a nebulizer, rarely. “No, that isn’t it,” she said.  That’s how good she is.  These remain small and for the most part asymptomatic (just every 20th breath—when I breathe very deeply—I feel like I have water in my lung, and have for a while).

So what does this all mean??  I don’t know.  I am moving much more slowly (than what? Than 40 days ago) and I am frustrated.  But (on the positive side) I have been writing some short stories, and it may just be that I haven’t had the energy until Carlos & Bob came back to town.  Yes, that probably is it indeed!

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

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.