I May Have Covid-19, But We May Never Know

So, here’s my Covid-19 – related story today.


Of course it probably wouldn’t have been Covid-19 related if it had happened a month ago.  But today I got to see what life is like for the amazing folks at Urgent Care and and an ER prepped to the nines for the oncoming wave.


So February 26 we returned home to Colorado after 7 days in the Cayman Islands and 4 in New Orleans.  We were in New Orleans during Mardi Gras.  (In my defense, remember how little we’d even heard of this a month ago?  Do you really?  Because I’m not sure I do, LOL.)


In the coming weeks I had a fair amount of chest pain.  Then a little bit of a sore throat.  A teensy bit of ear pain.  I was more tired than usual.


Of course I have a complicated medical situation…chest pain could easily be costochondritis, or a subluxed rib.  I’ve had a cardiac ablation.  I’m usually sore and tired, even more so after travelling.  Neuromuscular pain and overwhelming fatigue are my day.  So maybe I picked up a little bug.  I was jet-lagged.  And then there was altitude adjustment, and daylight saving time, which always screws people up.


But 2 weeks into this, instead of sleeping my normal 10-11 hours, now I’m dragging myself out of bed after 12-13 hours.  11:30am wake-up becomes 12:30, then 1:30.  The chest thing isn’t moving.  My heart is starting to feel sludgy and sloppy sometimes, especially when I lay down.  I sent a message to my PCP on the portal, but no reply. 


And then some days I feel clear.  Oh, I’m finally over it, I think.  And the next day always proves me wrong.  Back again.


And looming over us, gaining momentum hour by hour, of course, is Covid-19.  Could it be that?  It’s an awkward time to have allergies, a cold, anything which mimics any of the symptoms.   I don’t want to alarm anyone unnecessarily.  After all I don’t have a fever, and only a few coughs here and there.


So I call my doctor’s office.  There they offer to book me an appointment at the “respiratory clinic.” (Which really turns out to be Urgent Care, did they trick me on purpose?)


At the building I’m issued a mask between the sliding doors and instructed on how to use it.  At the next desk, just inside, one nice lady asks my name while another takes my temperature and places an oximeter on my finger.  We stand there for a short while.  The time begins to drag.  I look up at the nurse.


“Sorry,” she says sweetly, “I’m just waiting for your pulse to calm down.  It’s up, it’s down, it’s…”


“I have Postural orthastatic tachycardia,” I say simply.


“Ohhhhhhh!” exclaims the nice nurse.  “Thank you SO MUCH for telling me that!  That TOTALLY makes sense.  This is normal for you…OK, come here and sit down.”  I’m a little impressed that she knows what I’m talking about.  This place appears to have competence and preparedness oozing from its pores.


Pulse drama over, I’m sent out to my car to wait for a phone call.  I turn the car on and off a couple times to stay warm.   Return a few text messages. The phone rings and I proceed as instructed to proceed straight through the brown door marked “Urgent Care.”


Here I’m placed in a room and the door immediately closed.  A masked nurse knocks, enters and takes all my vitals and symptoms, and goes out to consult with a doctor.  He comes back in.  “Here’s where it gets a little tricky,” he says, apologetic. “We don’t have a way to deal with heart issues here.  We can take an EKG and diagnostic enzymes, but we won’t have the results until tomorrow at earliest.”


“That’s fine,” I say.  “This has been going on for weeks, I don’t think it’s going anywhere.”  And like we’re negotiating over a used car, he goes off to consult the attending physician.


And then I’m facing a masked physician.  (I’m secretly grateful doctors of all people, are no longer shaking hands in greeting these days.  He manages to sufficiently introduce himself, anyway.) 


“Here’s the problem,” my doctor explains, good-naturedly.  (Is everyone in Boulder good-natured?)  “You checked off enough boxes of concern for pulmonary embolism that I want you to go to the ER.  I looked at your reports from clinic and your blood oxygen is usually 99 or 100, while here it’s 95.  That plus chest pain, your recent international travel by plane, and what you’re describing…too often this could all be early warning signs of something  …bad.  I just can’t wait until tomorrow morning or even later for results.  By then it could be too late.”


I mumble something about my oxygen being at 98 in the lobby and maybe their machine is broken but his mind is made up.  He’s calling ahead to the ER.


“OK,” I hedge.  “I’ll go over there and see what the situation is.  If it’s crazy, I’ll wait until Monday.”  I hop in the car, change to my distance glasses, proceed 11 minutes away to the very nicely appointed Boulder Community Hospital. 


I was there for a mammogram just a few days ago.  (My clavicle is still subluxed from that boob-squeezing, shoulder-wrenching ten minutes, thanks…and now that I think about it, thankfully I didn’t think to mention left shoulder pain - that probably would have only set everybody’s minds even more deeply against my poor, innocent heart.) 


This is a swanky place, if you ask me.  Little sculptures in the seating areas, swinging tablet trays on armrests, a water feature in the courtyard features little bronze otters splashing in a replica of a delightful river scene. 


Of course that’s the clinical part.  The ER is a little more Spartan.  But clean, quiet and organized.  I see no crowds, no crying babies, no one bleeding.  There’s no wait at the front desk.


No excuses.


So another masked person checks me in while another takes my vitals.   I hand the masked intake nurse my color-coded, typed list of medications and diagnoses, and he nods appreciatively.  He’s curious about some of my more esoteric medications.   He seems somewhat relieved I’m not wheezing or bleeding profusely.  I can almost physically feel the calm before the storm here. 


I’m instructed to a seat away from the people they assume are contagious.  (Damn, another excuse to leave gone.)  A hard-working cleaner is mopping the floor over at the next bank of chairs.  Everything looks the picture of calm and competence.  Damn.


Soon I’m escorted back and given a private room where the door is snugly closed.   Someone brings in an EKG machine and my heart is checked, the machine wiped down.  Two others bring in an X-ray machine on wheels, painted like a giraffe, and my chest is scrutinized thoroughly and deeply.  Machine wiped, door closed snugly again.


The masked PA enters, but hovers near the door.  He confirms we’ve ruled out things like Pericarditis, and my chest X-ray is clear.  Then, surprisingly, he says, “It’s not unreasonable, based on your history and symptoms, to assume you may have, or have had Covid-19.”  He pauses and looks at his hands.   “But I don’t have any tests.” 


And then he’s quick to add,  “Even if you did have it, your symptoms are mild enough to where we’d send you to rest at home..Your oxygen is in the 90’s.  You’re not having trouble breathing.  But please do let us know if you do.  It’s good you came in.”


Lastly, the PA and I discuss whether it’s worth it to do a D-Dimer test, which checks for pulmonary embolism.  He’s pretty sure it will be negative, but carefully questions me three more times, does it really not hurt when you take a breath?  He’ll ask me again when he returns.


While he’s out I take some experimental deep breaths.  OK, if I’m being honest, it kinda does hurt, especially right at the apex of it.  Kind of a stretchy hurt.  And it’s just a blood test, right?


Oh.  It’s another trick!  A nurse comes in and says he’s going to insert my IV.  (IV? For a blood test?  Oh it’s just in case it’s positive, I’m told.  That will trigger a whole cascade of events which require a way in.)  My veins are not cooperating, of course.  I have a growing appreciation for my nurses at the infusion center who do this every other week.  They usually use a vein further down my arm, so I can at least bend at the elbow.  Finally he finds what I swear is the most painful possible spot on my right arm, the cubital vein (left was a no-go,) takes some blood and then I’m told - well, politely expected - to wait there for 90 minutes.


Can I go home and wait for the test results?  No, I’m told - for some reason if I leave the hospital and come back, insurance won’t cover.  What?  Argh.  I’d be less cranky if the internet were working.  And if I didn’t see, in my mind’s eye, an invisible teenly little, evil Covid-19 virus sitting on every single surface.  I don’t want to set my bag anywhere, hang my jacket, don’t want to use the bathroom, (but must, at least four times) don’t want to inhale, thinking of those gaps between my face and its sub-par protection. 


And am I weakly protecting myself from others, or am I weakly protecting all these brave, cheery, competent and good-natured healthcare workers, every single one of whom will be needed when this wave comes crashing in to shore, from ME?  In a few days, maybe a week or two, this ER will probably be crawling with fevered, panicked individuals.  Big decisions will likely have to be made.  These kind, seemingly relaxed souls taking care of me will be worked to the bone, exhausted and worried about carrying this virus home to their loved ones, or falling sick themselves.


I ask most the folks who come in and out of my room how they are doing.  Ready, they say, and nervous.  It’s coming. 


Ever try wiping yourself with your non-dominant hand?  You should, really, for a brain-training and coordination exercise.  (Also try brushing your teeth that way – it’s good for you.) I do that, hang out, answer some emails.  Most of them are from people cancelling, delaying or otherwise fretting about dates they’ve rented at one of the houses in Moab.  Our income is completely flattened until this Coved-19 thing blows over. 


Well, this is no good for my heart, I think, and turn on some Deva Premal tunes.  I close my eyes and try to be patient.  Abundance of caution, I think.  You did this out of logic, and abundance of caution.  Besides, better to be in the ER today then even a few days from now. 

The PA returns and announces the D-Dimer is negative; I’m free to go.  “But you should isolate, as you probably know.”  Of course I do.  We all do.  Social distancing is the new norm.  Even if the strongest possibility is we probably have some more mundane virus going on, as I believe is probably the case with me today.                                              


The IV is a wanker and I can’t wait to get it out.  Finally someone frees me and I’m out the door.  When I get home I immediately strip everything and take a long, hot shower, then wash my phone thoroughly with soap and water.  The bag can wait until tomorrow, and I’m not sure I should wash the down jacket.


These people I met today, I must assume they do this every day, and will for who knows how long?  Wondering if that little sticky virus followed you home from the hospital and is clinging, alive and waiting to be inhaled by loved ones, attached to a hair or a keychain or a seam in your underwear.   I have a little bit of awe.


Colin has made grain-free pizza and it smells delicious.  My chest still hurts.  I’m not thrilled about that.  But I’ve learned so much today. 


Mostly I’ve learned respect for all the people on the front lines, who kindly treated a fifty year old chronic patient like a person, followed protocol to a “T” and patiently talked me into the best care possible for myself, despite myself, and in spite of this huge, looming crisis no one is naïve enough to think we will avert. 


The people I met today seemed ready.  Ready to do what they are trained to do, ready to serve with compassion, efficiency and competence, ready to put their minds to work and bodies on the line for the greater good.  I came away confident we couldn’t be in better hands.






One Dream

State of the Niki, April 20, 2019

“When you’re healthy, you have a thousand dreams.  When you are sick, you have but one dream.”  - Unknown

So this is the latest:

I’m seeing a new Immunologist, Dr. Isaac Melamed, and a new Rheumatologist, Dr. Stuart Kassan.


Dr. Melamed ordered a total of 46 tubes of blood to be sucked from me, in two sessions (he wanted it done in one, but the tech protested I do not weigh enough.  Thank you, Nikki!)  The office fumbled scheduling more than once; getting it done was more difficult then having it done.  Each draw was supposed to be followed by a saline infusion to re-hydrate me, but in the second case, (because of said scheduling issues,) I did not have time for the infusion.  This may have contributed to a very unpleasant episode of sudden blood pressure drop/tachycardia which occurred on a plane a few days later.  I don’t remember an episode that bad since before my cardiac ablation.  But I digress.

Findings from 46 tubes of blood include: 

- I am now testing positive for Sjogrens ( in addition to my other autoimmune diseases.  This is not a surprise – it commonly co-exists with what I already have going on, and I’ve had dry eyes and mouth (and mouth sores) for years. 

- As before, I’m positive on the C4A, which other docs interpret solely as evidence of autoimmune connective tissue disease.  Dr. Melamed takes a little different view; he believes it is evidence of mold toxicity, which can be from past or present exposure.  I doubt it’s my current apartment in dry Colorado, but ordered the mold tests he advised, anyway.  For this toxic mold he prescribed a FOUL prescription-strength powder which needs to be mixed with water.  (Think chalk in an orange juice base, mixed with a little vanilla.)  I took this for 5 days and felt worse each day.  I think I’m going to discuss it with the office, and maybe give it another go after cleaning out the basement in the Catskills next month, and when I’m not recovering from a cold.  But I’m not sure I will tolerate it.  I can hack the taste, but if there’s no up side to dealing with the extra nausea, exhaustion and heart weirdness, then we’ll have to talk.

- Somehow my thyroid got really whacked (another autoimmune disease, Hashimotos, has been relatively controlled for years, but went pear-shaped some time between when I moved in June, and January).  I’ve changed my meds and think I’m getting back on track now.  The good news – I’ve been able to gain weight for the first time in years!  The bad news – I’m exhausted and, oh, man I gained a little more weight than I’d like for my unstable joints to carry around!


There are other findings I’m unfamiliar with and won’t try to interpret for you.  One is associated with hearing loss & Meniere’s syndrome, others show I’ve had Epstein-Barr and pneumonia in the past…others I have no idea and can’t even find info on the web.


Dr. Melamed has prescribed, (in addition to the aforementioned foul, can I say FOUL, gross, yucky, icky, cough-cough Cholestyramine,) a series of non-Rx meds which I’ve gone down several rabbit holes trying to procure affordably.  Some of you may have read on facebook that I had a dream that I stopped at a roadside porn filming outfit, where they would pay me $283 to be in porn…and all the chocolate I wanted?  I’m pretty sure this dream was about the slimy process of trying to get some of this stuff.  Three are made by Xymogen, who doesn’t allow distrubutors to publish prices.  So finding what the actual price is?  Frustration.  One is a probiotic, another is a potent antioxidant and detoxification support. …they all make sense, intellectually, I suppose.  I just feel like I’ve been down this road many times before, where docs prescribe all sorts of stuff, and I pay for it, and it does zilch to help, but the supplements create their own symptoms, which I’m told are my body “detoxifying” or something like that.   It’s impossible to verify, prove or predict anything.  On the other hand, I do think this doctor has some smarts and experience dealing with the particular situation, and is on the cutting edge.  And I checked; I’m pretty sure he’s not getting any kickbacks from Xymogen.  That’s the practice of medicine.

Dr. Melamed also has a focus on MCAD – mast cell activation disorder – which is thought to be a disregulation behind all the other things, like autoimmune disease and EDS (Ehlers-Danlos syndrome.)  The theory goes thus, as best I understand it:  Over-activation of one’s mast cells disrupts the collagen, which disrupts the connective tissue, which you have everywhere. So this, in turn, disrupts every organ and system in the body.  So of course he prescribed even more mast cell stabilizers/blockers (I already take three.)  Now we’re up to Cromolyn, Singulair, Loratidine, and adding generic Xyzol (which is OTC, but for some annoying reason needs a prescription from the doc in generic form… what?) and Ketotifen. Of course the latter two come from compounding pharmacies and almost none of this is covered by insurance.

In case you want a little more info, here’s a “Dr. Jill” article on EDS and MCAS:

Speaking of compounding pharmacies…for the latest pelvic infection, the medication I usually use (Cortofoam) is in short supply nation-wide, and the other prescription offers are “not FDA approved.”  So I had to wait and have a combo of Clindamycin 10% hydrocortisone compounded.   I’m getting very familiar with my local compounding options, and my pocketbook is, also.

This past 1-2 months I’ve also had a gum infection I can’t seem to show the door, and a nasty bronchial cold.  (Add applying anti-bacterial liquid to gums 20 minutes after brushing to the daily routine, which includes several meds which need to be taken separately from each other and food, and stuff put up my whoo-haa at night, and of course I could spend all day doing prescribed P.T.) So, the usual.  I suppose it’s a good thing that, given all the imaging and blood results none of this seems to surprise my docs, anymore.  And no trained health professional has treated me like I’m a hypochondriac for a many, many years.

Dr. Melamed also feels it’s possible a Lyme infection (or co-infection) could be behind some of this.  Of course Lyme testing is more porn-level sliminess to investigate. So much controversy in the Lyme world.  He has tests he thinks he trusts.  Other docs disagree.  I’ll do them because I’m an agreeable patient.  And I always have hope.

In addition, Dr. M. sent me out the door with instructions to eliminate “grains, tomatoes, sugar, citrus, nuts, and dairy.”  Then he passed me off to his (not highly medically trained) assistant, who glanced at it, said, “Just FYI, by ‘nuts’ he mostly means peanuts, so if you’re like, drinking almond milk, that’s probably OK.” and left.  Naturally I spent the following days buried in research.  What diet, exactly, is he leaning into?  Anti-inflammatory, low histamine?  Or some devilishness of his own?  In retrospect I think it’s a little cray-day for a Doc to send a patient out the door with such vague instructions concerning a huge swath of the American diet.  Grains?  What, exactly is considered a grain?  And what am I to eat, instead? 

I’ve called the office to see if the staff nutritionist has a clue.  I do believe that especially at this stage in life, (“mid-life”) what we eat may be among the most important decisions we all make every day.  After all, I just heard from 23andMe that I have a 41% chance of developing Type II Diabetes, as many of us do.  Colin is already clearly also at risk for this.  There is scientific evidence that reducing certain foods reduces inflammation in the body.  There seems to be no final word on anything, but this may be a start:


Dr. Kassan is the local rheumatologist people see for EDS.  He has multiple awards, speaks nationally, etc.  I waited months to see him, and he runs notoriously behind schedule.  (My appointment was at 1pm, I called several times and was told to come at 3:30, and still waited until 6:30.)  He’s a pleasant enough fellow, but not sure he’s worth the wait.

Dr. Kassan has a couple things to say:

In his opinion, I’m “112% positive” on the Beighton score, meaning I have hypermobility type Ehlers-Danlos syndrome (hEDS.)  When the criteria changed a couple years ago, another doctor nudged me over into the “Generalized Hypermobility Syndrome” category.  Not that it changes how one feels or is treated, but labels do sometimes matter.  In his opinion, my joints far surpass the motor tests for EDS, plus I share all the “right” auto-immune diseases which are common with EDS. So…yay?

He also seemed quite impressed at how few surgeries I’ve had, considering the Orthopedic diagnoses.  (I told him I avoid surgeries as best I can, using good P.T., pain management, and massage.  The heart and knee were somewhat unavoidable.)

Like any good rheumatologist, naturally he wants more X-rays, a bone density test, and, of course, more blood.  I’m sure all my doctors are secretly vampires.  It’s a vast vampire conspiracy.  Based in China.  Or Russia.  Maybe Romania.


There is some good news:

My physical therapist, Kathryn Proctor, is hands down the best body practitioner I’ve seen in over 20 years.  About half her patients are like me – hypermobile with some heady combo of genetic and autoimmune involvement – and she knows her stuff.  She gently coaxes my spine (or hip, or ankle, or whatever) back to something like normal once a week, and doesn’t complain when I mess it back up again the following week.  She never asks me to come in and do exercises – she’s all hands-on, correcting issues, and giving great advice.  Insurance is currently paying for an hour a week and it’s some of my most treasured time, because I leave her office in less pain than when I walked in.

Overall, I’ve been really happy with the high quality of care I’ve experienced in Colorado.  It feels to me like by the time the doc sees me, they still have some energy left for me, as opposed to in NY where the city and all its trappings seem to have sucked the life out of them before I darkened their door.  The pool of knowledgeable folks is large enough to have selection, but small enough to where practitioners have mostly heard of one another.   

I feel supported in a way I haven’t in a very long time.  It’s the little things, like I drive up to a spot at the clinic and walk the short distance in, the doctor’s office is clean, the receptionist makes me feel welcome, the nurse looks me in the eye and listens to every detail, the doctor interviews me dressed, then spends a little extra time after the examination.  The exam skirt is fabric instead of paper.  The pharmacy calls me after EVERY new medication, just to see how I’m doing.  Little things add up.

And there’s the sunshine.  I finally have vitamin D levels in the normal range!  (I do take 5000iu per day, too.)  And the psychological boost is real.   Having outdoor space, is amazing, and a washer and dryer at home saves me a whole day of energy doing laundry every 10 days or so. And I absolutely adore my hammock.

And research is coming.  A genetic mutation has been found which links three of my main “conditions,”  EDS, MCAS and POTS.

But I’m still generally exhausted, in pain with brain fog, digestive issues, infections and soforth, and having episodes of things like near-fainting, tachycardia, sweating, possible allergic reactions, blah, blah, blah.  If the hope of moving out West was complete recovery, it has fallen quite short.  But I never had that hope.  I swear.  Not even a little.

Next steps? As always, debating what the best “bang for my buck” is going to be, even moment to moment.  Is the best way to spend this next 20 minutes of my limited energy filing taxes, working on that song I’ve been trying to write for the past year, on the phone with a friend, or researching another alternative treatment which could pay off in increased energy (and more time for the previously mentioned things…)  down the road?  Is the best use for that bit of money a real estate investment, a massage, a class on music media, or a bunch of unproven supplements which could improve my productivity down the road?  How about stem cell, or ozone therapy?  A fecal transplant?  

I try to digest a waterfall of information by mouth every day, while not getting drawn into the water.  












Me, in a moment of desperation, morning number 12:

If this is the right place, I sure could use a sign. 

What kind of sign, Niki? 

Heck, I don’t know, maybe if we saw the eagle again…


I know, there’s no such thing as signs. 


We were on day six, seven or ten – who can recall? - of full-time, grueling apartment hunting.   Before arriving we’d spent collectively maybe a week in the area, so each experience was new, everything had to be learned, from how to recycle Boulder-style to where the grocery stores are.  Thank the tech gods for GPS.  


Each day I started out chipper and excited to see a new space. Each day by the third apartment, I was broken into a thousand micro-pieces of pain and exhaustion, which I lifted up to the universe in a big question mark, then dropped in a disorganized heap on my soft, foam Airbnb pillow at night.  Colin did physically better, but by the time a week had passed and we’d found nothing suitable, he was looking crookedly hunched, like a stick left out to dry in too much brazen sunshine.  Despite the excitement and beautiful mountains, we were snapping at each other over minor annoyances.  In a word, we were both demoralized. 


We’d agreed to look at nothing over our $1700/month budget for the fist week.  But everything sucked.  It was dark, or too small, or full of dog hair and looked out onto a brick wall.  In Boulder things are over- priced and shoddy, meant for students at the University.  In the ‘burbs, it’s a little less over-priced, but construction is visibly new, which on one hand usually means lovely looking cupboards and countertops, and on the other hand means thin walls and zero character. 


We learned so much that first week, such as how the corporate overlords of large apartment complexes change prices based on some algorithm meant to maximize profit, but seems to mere mortals like diabolical whimsy.  Some apartments wavered above, then below the $1700 mark, changing prices sometimes twice a day, not by just $10, but as much $80 or more.  It was like internet dating and buying an airline ticket combined  – more than once we became emotionally attached to a space we’d seen pretty pictures of on the internet, only to find that one had gone off the market or the price had gone up the next day.  We put an application in for one condo I fell for, but Colin felt isolated in the neighborhood and didn’t feel the bedrooms were big enough.  We had panicked and pulled the trigger too fast.  $110 gone.  The clock was ticking; we only had a week left.


Every morning Colin would check all the prices of all the floorplans we were interested in. “Bad news,” he would say when I woke up, “That one we wanted at Bell Summit at Flatirons is $62 more per month than it was when we went to bed.”  Start over.


Speaking of Bell Summit  at Flatirons, want another head banger? Everybody has named their apartment complex after the Flatiron mountains. So there is Bell Summit at Flatirons, Bell Flatirons, Grand View at Flatirons, Flatiron View, Flatiron Crossing… Addled from seeing the same dark wood imitation laminate floors in 18 apartments with practically the same name, I started referring to them as, “The one with the – you know – which was behind the thing,” and expecting Colin to figure it out.  Amazingly he had about a 50/50 shot.


Also, all of those apartment complexes have slightly different ways of breaking down the cost of your utilities, so comparing apples to apples requires, well, more guessing than math. Which creates a kind of low-burning, chronic frantic, frenzied doubt.  Whatever you do, it will be a gamble.  At most condos, water sewer and trash is included.  At some apartments, they participate in this socialistic system where everyone in the building shares the cost of these things. Some are in between.  In one case we were told that while we’d share the cost of air conditioning with the building, (and that it was gas powered,) our cooling bill may be more because our unit would be on the South side.  That turned out, not surprisingly, to be untrue.


At condos you may get a garage, but heaven forbid you skip the fancy amenities at some of the apartment complexes such as a tanning bed and doggie spa. In the way of amenities we might actually use, year round pool and hot tub topped our list.


We figured out early in the process that we were going to have to make some sacrifices. We both work at home.  Right now we have a really good deal on about 1100 square feet.  Colin’s office is in the formal dining room, plus we have two bedrooms, making it a practical thee-bedroom space. We have a whole bedroom dedicated to a massage/guest space. 


In the modern building frenzy in Colorado, there are no formal dining rooms.  But Coloradans wouldn’t think of having an 1100 square-foot apartment without a second bathroom and a washer and dryer. (Do we need a second bathroom?  Only when certain friends come to visit, or one of us is prepping for a colonoscopy.)  That’s the equivalent space of my office or my massage space.  Where will that go in the new world?


I’m not even sure I will ever feel well enough to do massage again, but would like to be optimistic, so maybe that’s not a priority. On the other, other hand, I do you like to keep my table up just so I can get face down and horizontal, which seems to relieve some of my pain.  Guest space?  How many people will come visit us, anyway?   Unknown!


So we decided the massage/guest space would have to be split up – massage, if plausible, would happen at the foot of the master bed, and Colin would put a futon/couch in his office space for guests. That required two beefy size bedrooms.


To complicate matters, we now have two trailers.  Yes, we are those people.  Our pop- up is already stored at a facility nearby, but Colin had hoped to retain access to his 5 x 7 cargo trailer he uses for shows, at least in the summer.  To our dismay, parking is a big issue in many Boulder and Broomfield areas.  You can drive anywhere for one minute and see wide open land, but no trailers are even allowed to park in most apartment or condo lots, even if you’re allowed two cars and it’s counted as your second car.  One tour guide even said they lack enough spaces for two cars per unit, so overflow is across the street at the bank, where you’d have to move your car by 10am or it would be towed.  If you pay for a garage, you lose one of your two allotted spaces, so may still have to use overflow if you get home later at night.


Here I put my foot down.  I am not moving to Colorado to continue the madness of moving my car every day, even if I’m not using it!  We will have a garage, or enough allotted space for our vehicles.   Colin volunteered to put his trailer in storage. 


Still, after a week we had 13 pages of notes and still no apartment.  


Meanwhile, after trudging through twenty spaces or more, I threw in yet a new criteria (I know, I’m such a diva!): there must be light coming from at least two sides in any living space. I also did not come to Colorado to live in the dark, I declared, and we saw too many spaces which looked like the light at the end of the tunnel. At only the end.  I am over it! 


Well, I did my best to put my foot down, but it wavered, my big toe peeking out, sliding along the edge, seeking a way out.  I kept thinking of all the movies I’ve seen where someone was being tortured and a faceless voice says, “You can make this all stop. You can make it all stop right now.  Just tell us what we want to know!” 


Just pick a space.   Any viable, reliably safe space. Whatever it is, it will be better than Sackett Street, (six years was not that long ago) with four flights of stairs, cockroaches, the furnace spewing carbon monoxide…All you really need is to keep the rain off your head and the chill winter air off your skin, right? 


But then I’d have to live there. And we don’t know for how long.  Might be one year, might be five.  And I really, really want a positive change of environment.  It’s been twenty years of city living, and I want…space, quiet, mountains, sunlight, a patio, clean air, hills and dales ….  No moving the car every day for street cleaning, no hauling my laundry three blocks away, no schlepping groceries on the subway, no emergency sirens 24/7, no opening heavy building doors, and heavy elevator gate and door (or up three flights of stairs) with stuff in my arms.  Just. No. More.


After a week or so, we did the math six different ways and figured out that we would have to increase our budget by at least $100 per month in order to get something that would truly make us truly happy to work at home most days, and come home to when we did choose leave.  By that point Colin had met with three theater companies and a corporate production company, all of whom seemed likely to engage his services at some point in the future, so stretching the budget by fifty pucks a piece didn’t seem too crazy.


Enter Terracina. We had looked at an apartment complex nearby, Catania, when we were in town last year. On the surface it looks to be a super nice, ultra modern complex in the middle of industrial nowhere. We had gone for about a half mile walk, which passed Terracina, and found a small park which seemed, honestly, a little sad. It bordered a highway on one side. There are no restaurants or businesses to walk to. Construction is happening on some future unknown businesses across the street. We were unimpressed despite many fancy amenities at Catania.


Terracina is designed to impress as an ostentatious Venetian resort, even from the outside.  As we’d walked by, our artist-brains said, “Well of course I’ll never afford anything like that.”  To us, theater people, it looks like a well-dressed set.  A three-tiered fountain dribbles water droplets into a shallow pool at the main entrance.  Romanesque columns support a horizontal trellis which is only missing aspiring red grapes.  An internet search shows an expansive, crystal blue pool surrounded by perfect loungers, a gazebo, bocci ball and basketball courts, an Italian-inspired yoga space with lofted ceilings, and a business center.


And one of the floor plans seems like it might work.  According to the drawings, one of the bedrooms is fifteen feet long, perfect for adding massage space.  The other is definitely large enough for Colin to share with a guest bed.  One morning Colin pulls out his laptop magic and says, “Hey, one of these is currently $1825 for a twelve month lease.  Wanna go look?”


Well, what the heck.  Of course, like everywhere else, we can’t see the actual apartment we’d be leasing.  We can’t even see the actual floor plan.  Just a model which is, “Very similar, but there would be an extra bedroom here, and some more space, like, here for the dining area.”  And on the other side of a vast complex.  We’re used to that by now.  I have a compass app on my phone, to assess sun coverage.  And we can imagine.


There are two units available in that floor plan.  Both are on the ground floor (not so great for views, but I’m also trying to reduce the schlepping factor, so… good.)  Both have light from two sides, and a floor plan which would somewhat separate my office form the living room.  Good.  One is $1776, one is $1901. The first, explains our tour guide, has partial views of the prairie behind.  The second, good views, which includes a field with horses. 


Horses are good, we say affably, and since we can’t see either unit from inside yet (they’re occupied) we go for a walk, and try our best not to look like we’re casing the joint. 


Circumnavigating the property, we came across the partial view first.  We noticed prairie dogs scurrying about along the slice of land  visible from the patio, and decided if we lived there we’d likely film a prairie dog version of “Meercat Manor.”  We tried not to notice – or mention to one another – the fact that the bedroom window looked at the dark, cement garage only feet away, and the view from the main floor mainly consisted of the building across the street.  It’s perfectly acceptable, we said, and continued our path along the back of the property.


Green space.  Open, pastoral, quiet, beautiful green …space. What?


As we walked along the path at the back of the property, I felt my heart quiet, my nervous system open up and go still.  I heard no highway noise, no loud intake vents, no ice cream trucks.  Just the occasional snort of horses nearby, and was that frogs we could hear chirping in the small pond just over yonder?  We sat down on the steps outside the entry to option #2.  The one sorely over budget at $1901/month.  It seemed like a good place to sit.  And rubbed our sore calves and closed our eyes, a moment. 


“I’m going to admit to you that I like this location better.”  I said to Colin. 


“Yeah.”  He said. 


We sat in silence a few moments longer, gazing at the horses and the prairie.


“Is that an eagle?” I said, knowing my eyes aren’t so good any more.


“Um.  Yeah…  I think…  Yes!”  he said.  And we watched as it soared, bald and proud.  Probably hunting our prairie dogs.  “Maybe it’s a sign.”


We both laughed.  There’s no such thing as signs.


So we put “prairie dogs” on our list of potentially acceptable spaces, but not “horses and eagles,”  because when you’ve started out with a $1700 ceiling, $1901 is right out.  We watched prices on both fluctuate daily, while shifting our search mostly to condos and townhouses, figuring those may be a better fit.


Meanwhile we did some more research on the area.  Turns out it’s actually .9 mile from the Park-n-Ride bus direct to Denver, and one of Colin’s big pet peeves about most our potential haunts is lack of public transportation.  Also, .2 miles away is the bus to the airport.  About 2 minutes down the road by car you can find Flatiron Crossing, a bustling hub of businesses and shopping mall, and by now Colin had grown used to the idea of driving for more of these kind of things.


We also learned there’s a wildlife refuge not far from the complex, which rescues, among other things, birds of prey.


A few days later I woke up and Colin said, “Prairie Dogs is gone.”  So we spent the next 48 hours looking at more spaces, mostly condos, which were starting to come available now, 45 days  before we want to move in.   


Then, one morning: “Hey, guess what’s down to $1828 this morning?”  Eagles and horses.


Me, in a moment of desperation, morning number 12:

If this is the right place, I sure could use a sign. 

What kind of sign, Niki? 

Heck, I don’t know, maybe if we saw the eagle again…


I know, there’s no such thing as signs.


So Wednesday we went back out to Terracina.  First we applied on line, so we could lock down the price and no one could rent it ahead of us.  We’d lose a max of $100 if we backed out in 24 hours. After than, $400.  On Thursday, a unit with the same floor plan was open for inspection.  We went for a walk again.


We toured the beautiful blue pool, the gazebo with comfy chairs and the dark cement parking structure.  We admired the sculpted landscaping, the view of gleaming white mountains from the front of the property, the business center with dark wood, oversized furniture, and even a nook high above which has a table and chairs, (but no way to get to it - staged for effect.)  We sampled the chocolate latte you can get out of the machine.  It was good.


Walked along the perimeter at the back of the building.  No eagle, but further along the path, we found ourselves at the “sad” looking park we’d seen the year before.  Only now it didn’t seem so sad.


“That’s the eagle,” said Colin out of the blue, almost as if it were another Subaru Forester, just like ours, parked next to us.  It happens.  There, I saw, up at the very top of a tree across the field. “And I think that’s a nest, right underneath.” 


Well, all right, OK.  There’s a refuge, so odds were in our favor.  We notice two guys heading toward the tree, with what looks like a big telephoto lens and some binoculars, so we’re not the only ones who’ve noticed.  We circled around back to the reception area, where we declare our find.  “Did you hear there are babies?” said the young woman working there.


Baby eagles? 


“Ok, now I’m sold.” Says Colin.  Signs or no, I agree.




So we are $128 over budget.  We hope we can make up some of that in free lightbulbs and coffee for Colin. (We’ve never lived in an apartment before where lightbulbs and fancy coffee are supplied.) Also, maybe by body will need less body work with access to a pool.


When we measured the similar model, (now open,) we discovered the master bedroom is only fifteen feet long if you include this awkward space where two doors close, so …the massage table space is back on the table, as it were.  We’ve heard the walls are paper-thin, and a woman sitting next to us in the lobby explained that she’s leaving because the upstairs neighbor’s dogs are too loud, scampering overhead in her living room.  Reviews of all the local apartment complexes are mixed, nnd it will be tight, overall.  Nothing is perfect. 


But we’re choosing it, anyway.  For the baby eagles.  And to make. It. Stop!

I’m Breaking Up With Flipkey/Trip Advisor

I am dropping FlipKey/TripAdvisor as an on-line rental service.  Their behavior, in my opinion, has reached beyond mere incompetence to downright maliciously immoral.  Here’s why:

-       If you’re a guest, you have 24 hours to cancel with 100% refund.  That’s it.  No matter how the host has set their cancellation policy, you cannot get back the Booking Fee paid to FlipKey – which is murkily anywhere between 8 and 16% - unless you cancel within 24 hours of booking.  VRBO/Homeaway and Airbnb refund that fee along whatever policy the host has set up.


-       As a host, you cannot set up more than one property under one login.  For us this has meant constantly logging in and out to manage our three properties.


-       Guest or host can only make one change to any reservation.  If you need to change the dates, amount charged, etc. more than one, you have to call customer service.


-       If you call customer service, you wait on hold for a long time, then get someone in a foreign country who has no access to your previous eight calls.  They may be the nicest people in India or Phillipines, but they are helpless to solve your issue.


-       It goes beyond incompetent to malicious, in my opinion.  In my most recent issue, my guest and I needed to make a change to his reservation.  He asked to change his dates.  I followed the procedure to propose the change so he could approve it, and he did.  But the new dates never showed up on FlipKey.


Later, because the dates displayed wrong on the website, I accidentally sent him charges for an extra night and he approved the change.  We both realized this mistake but could no longer make changes, so called customer service. 


We were told he must cancel the reservation must be cancelled and re-booked.  It took us both 7-8 phone calls each to make this simple thing happen.  As for the over-charge?  Here’s where I think it smells especially rotten:  I had over-charged the guest by one night, which was $200.  That also meant he was charged an obscure amount extra in booking fees, as well as taxes. 

So I asked the rep to make sure when the guest re-books, he’s charged the correct amount.  At first the rep told me I would have to refund the guest $200 at check-in.  But what about the extra booking fees and taxes, I asked?  Well, you refund him $200, he replied.  But what about the extra charges?  We went around and around.  I asked him to figure out for mw what the booking fees would be so I could refund my guest that amount, even though I’d be “eating” it.  He went away for a long time, then finally came back and said the old amount of booking fee was $158.78, while the correct amount would be $130.  “That’s only 17USD,” he said.


Oh really?  I’m no math genius but that’s $28.78.  Plus taxes.   Which my guest is owed. 


“Don’t worry, about it,” the rep says again, “Your job is done here, we will refund the guest $200 when he checks in.” 


“But he’s owed more than $200,”  I say again.  “He’s owed 4200 plus $28.78 plus taxes.”


Round and round we went.  And finally he hung up on me.


Meanwhile, out of desperation, my guest and I found ways to reach each other via email (oh – another gripe – while other websites will redact personal info you might share to get in touch with one another outside their platform, FlipKey will delete the whole message, meaning you could both lose important  information you’re trying to share.)  He was completely confused about money, and no surprise -  turns out he’s never seen a breakdown of what’s what, rental amount, booking fee, taxes, security deposit, cleaning fee.  I can’t verify this is true because I’ve never made a booking as a guest through FlipKey, but this guy seemed pretty savvy and he saw nothing like this to help him navigate what was true.


Which explains why the rep through they could get away with not refunding my guest all he was owed.


So, to conclude, they forced us into a position where my guest had to cancel and re-book (rather than just modify the dates like rational human beings might on any other platform) by screwing up our date change in the first place and not allowing more than one change each.  Then, they screwed up trying to fix it in every possible way, making multiple phone calls possible (they send emails but you can’t reply, and when they say they’re going to call, they don’t.)  Then they tried very hard to not refund my guest what he was owed in the way of a refund, acting like they were doing us a big favor by re-booking him.  Every interaction was a disaster, down to the fact that they kept telling me I needed to release the dates so my guest could re-boo, but they were his original dates and the site wouldn’t let me.


THEN they told my guest – five times this went back and forth, in writing and by phone calls- that my permission was needed to get him 50% back on his original cancellation.  That should not have been remotely necessary – my policy is 50% refund within 8 weeks of the guest’s stay.  This was happening in February and his stay wasn’t until July – not even in the ballpark of 8 weeks.


We’re kind of used to Flipkey not being the brightest bulb in the batch.  When they switched over to the pay-per-booking model, their alternative annueal fees were insane and varied by market but not in any way which reflected potential profit in those markets – they were going to charge us way more for the Catskills than for Moab, which is insane.  Also they often make mistakes with money, they take the longest to refund a guest’s security deposit, etc.

But this went beyond merely fumbling the ball as we’re grown used to .


So, frustrated as I am with VRBO/Homeaway for “double dipping,”  (now charging an annual fee and booking fees, having followed Airbnb in the model of charging per booking,) I’m dropping Flipkey in favor of VRBO and Airbnb. 



NY has Medical Marijuana. Yay?

In May, a doctor prescribed Medical Marijuana for my chronic pain. It should be good for a year, but he accidentally put an end date on the certification when entering it in the system. By the time I got my card and tried to pick it up, the date had passed.

I went back to him to solve the problem. While I was sitting there he tried to fix it, but said the system was down. I heard other docs were having the same problem that week. He said, "Please call and remind me in a week, and I'll do it."

So I did. And I have called once a week since then. I even called the MM Program to see if they could help him. They said he can erase it and start over, or call them and they can talk him through a fix.

Last week the receptionist spoke with him and relayed the message that he's aware of the issue and will take care of it.

Today I called and talked with the receptionist, saying" Hello, this is your weekly call to remind Dr. M to deal with my prescription."

He said, OK, but I'm afraid I'll get yelled at. I thought he was joking.

A few minutes later the receptionist called to say the doctor crumpled up the paper, threw it at him, and yelled, saying "I will not, not not not NOT deal with this!"

He seemed so calm and thoughtful in our sessions. I'm shocked.

And so done.

And so moving to Colorado.

Guinea Pig Dropout

Posting this here for those interested and not in any of the facebook groups I wrote it for.  

Hi all,


Apologies in advance for the long post!  This is about as succinct as I could make it.


Many of you know a few of us were “patient models” at a vascular conference in Austin this week.  At our section of the conference we were organized to be scanned via sonogram as education for pelvic vascular issues.  Four “proctors” scanned us and showed rotating groups of 3-5 individuals (which included doctors, sonographers and others) what they should look for, then handed the wand over and each person got a try. 


We’re all still very much processing our experiences, and they were all very different so I’ll let the others speak for themselves, of course.  There’s a lot to share, and I’m sure I can’t retain 80% of what I learned in the one day I participated, but thought I’d try to “brain vomit” up some of my takeaways before I forget.  I’ll cross post on the PCS, MTS and NCS pages.


 1 - There’s a really important difference between Nutcracker “anatomy” and Nutcracker “Syndrome.”  As learning has progressed about NCS, knowledgeable practitioners have moved on from merely noting a narrowed vein and diagnosing the syndrome to measuring pressure gradients to determine whether blood flow is actually impacted.  If you have symptoms of NCS, the preferred method of determining this it to have Doppler ultrasound imaging done to determine if blood is flowing well or poorly through the renal vein. 


 2- I don’t think it can be over-emphasized how much we need to seek out experienced practitioners with these syndromes.  One of the takeaways we all had from this conference is that the person holding the wand makes all the difference.  For example, there was one “proctor” who consistently didn’t see compressions the other proctors (and some of the students) did.  This created some confusion and frustration for some of us, who have already had conflicting imaging. 


3 -“May-Thurner” is out, “Iliac Compression Syndrome” is in.  Apparently the term “May-Thurner” refers to only one type of possible Iliac Vein Compression, so the more generic term is preferred.


4 - Outreach is ongoing.  Sara mentioned that Dr. Meissner “did the rounds” of Gynecologist  conferences and spoke about these conditions.  Sadly, most gynes still aren’t having it.  Thus so many of us have seen gynes who don’t know about vascular pelvic conditions.  I’ve said this many times and will repeat it here:  if your symptoms are being dismissed by a doctor, it is your choice whether to educate them or move on.  Or both.  I have moved on and sent letters months or years later. 


5 - Research is ongoing, albeit at a trickle.  Sara is currently trying to create a longitudinal study following 57 women, but in order to make it “robust” she must take it outside her sphere of bias and all of this takes time.  We definitely need more of Sara.


6 - We ALL exist in echo chambers.  I was humbled to note presenters on this subject whose names I’d never heard.  I spoke with a doctor experienced with pelvic vascular issues who’s on the East Coast and I was completely unfamiliar with, despite researching pretty hard.  Likewise he had never heard of Drs. Scholbach,  Venbrux, or Hong.  He’d also never heard of Sollinger’s work or ideas regarding auto-transplant, loin pain hematuria syndrome, and lidocaine testing, (he thanked me for educating him.)  This is the way Western Medicine works, and one reason we have to work so hard to find effective treatment.  Transplant surgeons don’t go to vascular conferences.  Vascular surgeons don’t typically go to Gynecologist conferences.  Don’t even hope your gastroenterologist, (whose “stuff” is in the same area,) knows the same things your vascular specialist knows.  There’s just  a lot of knowledge to be learned, and Western medicine compartmentalizes so that no one has to know everything. 


In my opinion, at some point I think most of us must tackle the echo chamber problem head on.  If ever there was a time in your life to pause before being treated, this is it.  Naturally we all want our doctors to know everything, and come up with an immediate solution.  We’re hurting, we’re exhausted, we’re  just desperate for our lives back. But I suggest carving out 20 minutes a day, or maybe a few hours every other Friday, or some such program, to educate yourself before taking action on any of these syndromes, particularly if there may be a compression involved.  Read back pages on support groups like this, pull up studies, see several practitioners even if it means investing in private pay care.  It seems to me it’s very easy to take action which will not work out well for us, out of desperation for a quick fix.  Know that even experienced doctors differ on the best action to take, and the order in which to do it.  Each of us is different and these decisions are very personal.  There just isn’t enough viable data out there to make a truly educated decision, therefore ultimately you will have to just take a leap, but an educated leap is far preferable and takes patience.


7- For those who will need more than one procedure, there are some doctors who prefer a “top down” approach (address Nutcracker first) and those who prefer a “bottom up” approach (Andrea will have more info on this.)  I wasn’t there for the detailed discussion, but know there are experienced practitioners who disagree on this matter.


8 - I overheard a woman at the conference say, “I have patients whose marriages are on the line because of these conditions.” 


I have a personal opinion to share on this subject, and please forgive me if is crosses a line for you personally, but I hear many of us struggle with this and need to hear it.  If you are in a relationship with someone who may leave because you can’t have intercourse, they have some work to do.  There are plenty options for sharing love, pleasure and sexual stimulation other than vaginal penetration.  If this is the only way you are showing each other love, then you both have some work to do.  If that work is ongoing and this person still has a foot out the door, they are not worth your precious time on Earth.  That person is not good enough for you.  That person is not courageous enough for you.  You deserve someone who will fight for your pain-free status as hard as you will. 


9 – OK, lastly, my own experience.  So I was the only one of the five of us who seemed to be showing no compressions or even venous reflux at all on sonography on Thursday.   It would seem I may be one of those people who shows Nutcracker “anatomy,” “physiology” or “phenomenon” but not the “syndrome,”  though I still have a teeny bit of residual doubt.  Keep in mind we never did imaging while standing (which is where I’ve showed most pathology in previous scans) until a very little bit at the end for me.  

I entertained many comments that my anatomy is “very pretty.”  I’m still not exactly sure what that means, but I think they meant “dainty,” as in I have very narrow veins.  My ovarian vein, a mere 2mm wide, is now notoriously difficult to even find, so I was great practice for newbies for a while.  I am aware IRs have had difficulty with my jugulars before because they are just freaking teeny.  At one point someone noted possible internal iliac reflux, but I certainly wasn’t “performing” at the level our other friends were ;-) and eventually everybody was crowded around more fascinating subjects, as I had become basically the “normal” control.


One somewhat random note:  I was the only patient model who has not borne children.  Those of us who have been in this for a while know when these things show up in women like me, or men, there’s usually something other than “simple” PCS going on – a connective tissue disease and/or compressions contributing to symptoms.


So toward the end of the day everybody pretty much lost interest in me.  Not that I’m complaining, I was getting pretty tired of people poking around with cold goo on my belly.  But as I sat on the sidelines I reflected on the fact that I was naturally frustrated that I came all this way and wouldn’t go home with any more clarity on my condition.  My past imaging – intravaginal sonogram, sonogram, MRI, IVUS, etc. have all directly conflicted with one another in terms of NCS, MTS and even PCS.   So I completely lack direction as to treatment.


The organizers did make an effort to have each of us have some face time with experienced doctors, and get their opinions.  Of course by the time it came my turn to speak with Dr. Dougherty, someone had absconded with my very well organized paperwork I’d prepared with notes on all my previous imaging.  Since brain fog is one of my big symptoms and I have a LONG list of symptoms, previous imaging and co-diagnoses, I sputtered.  (Note someone was scanning me and 2 other conversations relevant to that were going on within earshot, and as open as I am, answering questions like “in what way *exactly* does intercourse hurt?” is not 100% easy in a public setting.)  After a few minutes the very soft-spoken Dr. Dougherty noted the conflicting imaging, and his suggestion was to have Dr. Rosenblatt (who practices at Yale in New Haven, CT) take a 2nd look at my IVUS. 


A couple hours later, near the end of the day I noted someone calling Dr. Rosenblatt by name, and boldly introduced myself and mentioned that Dr. Dougherty had suggested he take a look at my IVUS.  He came over and sat down with me.  By this time I’d brought all my imaging reports (and my condensed self-made summary) back up on my laptop. 

Takeaway for others: I can’t tell you how handy it is to be super organized with this stuff and have it at hand within seconds, because there is never enough time in any clinical setting, and in this case I was aware this person was under absolutely no obligation to spend time with me, having come over from another area of the conference and basically doing a favor, so I really felt pressure to not waste his time. 

To my surprise, after hearing my 2-minute summary (which I’d gotten better at by that time of the day) he wanted to know if I’d been tested for Lyme.  I have a folder of blood work inside my medical records folder and was able to bring some Babesia testing up pretty quickly.  Being based in CT (where Lyme disease was named, after Lyme, CT) I’m sure Dr. R has more than average awareness of the disease.  I explained that in addition to testing high at one point for Babesia, a Lyme co-infection, I’ve also lived in Bali and West Africa, so who knows what kinds of parasites and heretofore un-named critters I’ve picked up over the years.  He noted that my testing wasn’t done by the only lab he trusts in California, and suggested I send some blood to them even if I have to private pay – IgeneX.  So, note to self.  We also discussed EDS, my pelvic symptoms and other things.


In a few minutes he looked very intense, asked me to stand up, picked up the sonogram wand and (I swear without moving a millimeter) went right to this one spot in my left inguinal area.  I’m a little unclear here – seems like he was pretty sure he saw something, then moved to the right and didn’t see what he was looking for there, then back to the left.  He put the wand down and made his proclamation: he thinks I have a “Peri-uterine vascular malformation.” 


I’m still a bit unclear about the details on this, but it seems to be a diagnosis of exclusion for him.  I have certain very specific symptoms of pelvic vascular pathology, but reflux and compressions aren’t showing up on me in the same way they are on the others.  I asked if there’s another name and he said there isn’t, it’s just a thing with a generic name. 


He added that the good news is it’s treatable by sclerosing the malformation.  The bad news is that it has a high rate of recurrence.  I asked if he thought EDS may exacerbate rate of recurrence and he said unfortunately yes, probably.  The other bad news is the way he approaches this vein is intravaginally via sonogram with a needle (do I remember this correctly?  Sheesh.)  I looked him deliberately in the eye and said, “I will be completely out on anesthesia for this if we do this, right?” and he thankfully said, “Yes.”


Dr. R. wants me to have a venogram to confirm said anomaly.  I explained that I have Medicaid in NY and can only see docs in NY if I want to be covered, and there’s a narrow range of those who take Medicaid even in the state.  He suggested I see Dr. Khilnani, was was also at the conference and practices in NY.  He gave me his email address and we agreed I’d send my imaging for a 2nd look and coordinate with Khilnai for a venogram.


I called Khilnani’s office and of course he doesn’t take my insurance, but one of his associates in his office does, so I emailed Dr. Rosenblatt and we are discussing.


Dr. Rosenblatt spent maybe 20 + minutes with me total, staying after the conference had ended to speak with me, which I really appreciated.  Even more appreciated was his empathy for my situation; he said, “You’ve endured a lot and I’ve very sorry for all you’ve been through.”  I know how hard it can be to pull out empathy when you’re talking about this stuff all day, every day, and at the end of the day, and well it nearly brought me to tears.  We’ve all been told we’re just not strong enough, and it was just really nice to hear that from someone who really didn’t have to be there or say anything.


So that’s where it is at this moment. It was pretty intense.  I learned a lot.  I think others learned from me, too.  I recommend it.  But plan your rest afterwards!  We’re all a bit sore and a maybe bit more cognitively and emotionally overwhelmed. 


I’m grateful to everyone involved, especially Sara S, and my other fellow scan-ees.  It was really great to meet them all as real, 3-dimensional people, even have dinner with some and process not just the conference but this whole life-with-little-understood health experiences with others in person. What an amazing, smart, forward-thinking, compassonate group of people.                                  Thank you, thank you all.


Peace out,  Niki

Guinea Pig

How I Spend My Time. (Or, Round and Round and Round.)


A friend recently wondered aloud what I do with my time.  It wasn’t a mean directive, it just was.  I had no problem with it.  


But it was hard to answer.  Without a full time job, where does the time go?  


And when it comes down to it, doesn’t all of life come down to this one question:  how do I choose to spend my time?


Like other people, I spend a good deal of my time doing things I would not choose to do, given the fairy tale version of my life.  Not having a 9-5 job does not release me from this natural course of events.  


But I do feel my time is spent less - rewardingly. (I may have just made that word up.)  When you have a job you can spend time in unpleasant ways and at least be able to say at the end of the day, well, at least I got a paycheck.  Or you deal with your children’s runny noses and can say, well, at least they will recover.  Or you have a repair on your tech gear and while it’s frustrating, at the end you  can say, well whew!  That’s finally fixed!


Here’s my day so far (after the late sleeping and recovery from the muscle relaxanat of last night, showering and necessary post-shower lie down, and a morning smoothie of rice milk and hemp powder.)


My gallbladder isn’t working very well.  Any ejection fraction under 35 is considered abnormal; mine is 17%.  Clearly mine is a bit of an under-achiever.  And it hurts.  Used to be a little ache now and then, but lately...


So my GI doc, Dr. Tseng, wants me to see a Biliary specialist.  He recommended Dr. Lamert.  Dr. Lamert doesn’t take my insurance.  Last week Dr. Tseng’s office made the unprecedented action of texting me the names and numbers of two other dotors!  I was so happy!


So this “morning”  (1pm for me) I begin:


Check my insurance website:  Neither of the docs show up.


Just to be sure, call recommendation #1 : Long phone tree, does not take my insurance.


Call recommendation #2:  Does not take my insurance.


Call recommendation #1 and ask about the possibility we discussed last week, which is that perhaps I can private pay for the consult with Dr. Lamert, and then do the procedure (probably an EGD with ultrasound) at NYU, where it may be covered.  Receptionist says they will look into it, but I should call my insurance company.


This is not my first rodeo.  I’m petty sure my insurance company will not be able to differentiate between a GI doc and a biliary specialist.  But i’m a good girl.  So I call. 


Longest phone tree ever!  But for once I get a woman who sounds educated, yay!  She’s going to find me a hepatic specialist.  


Hepatic?  Um I don’t have a liver problem.  Oh, says she, but the liver and gallbladder share a duct.  Therefore anyone who deals with the liver will deal with the gall bladder.  OK, I sigh, hit me.


She gives me 1 location with 3 docs, and another doc with 3 locations.  Only one of those locations is in Brooklyn.  The others are wayyyy up north in Manhattan.  I’ll put those on the back burner.


Call location #1.  They have never heard of a Dr. Law.


Call Dr. Law’s location #2.  Same thing.


Call Dr. Law’s location #3.  After about 5 minutes on the phone with this person, figure out what she’s trying to say is my insurance covers the clinic and Dr. Law oversees the clinic, but I will see a resident.  That’s fine.  Does Dr. Law deal with the gall bladder?


Receptionist cannot tell me.  Can you find out?  No, you have to come for a consulation.  Really?  That’s ridiculous.  Can you please find out for me?  No, you have to come in, first.  Well, woulnd’t it be really stupid for me to come all the way up there, over an hour away, to find she only deals with the liver, when I have a gall bladder problem?  That’s a consultation.  Is there not a nurse or medical assistant at the clinic I can speak with who can answer this question?  Only for current patients - you are not a current patient.  I am a patient at Mt.  Sinai, does that help?  No, you have to come in.  Round and round and round.


That is ridiculous, I say, and hang up.


Time for the back burner.  Next 3 names, go.  First number Blue Cross gave me is the liver transplant department, but at least they have heard of Dr. Schiano and give me a number.  Second number is close, but no cigar.  3rd number bingo!  Clinic with 3 docs who take my plan.  In theory.


Can’t see me until November.  OK, I say, but is there a closer location?  Yes, at Cadman Plaza.  Dr. Im.


Why does that sound familair….?  Oh wait I just called Cadman Plaza!  They had never heard of Dr. Law! But Dr. Im, perhaps.


Made an appointment with Dr. Im, but they can’t confirm he takes my insurance.  I look on the insurance website and every doctor with “Im” anywhere in their name shows up.   Except one with only “Im”


I call Cadman Plaza.  Choose the branch for billing, just to be sure.  On hold for 15 minutes.


Yes, Dr. Im takes my insurance!  Right now.  But be sure to check again the DAY OF the appointment, because you never know.  It changes.  I ask for the info I need for the referral.  Got an NPI #.  OK.


But is he a biliary specialist?  No one knows, for sure.


Emailed my PCP with the NPI # asking for the referral.


Texted my gastro with the info, as well.


Wrote down the appt, and reminders to check on the referral and the insurance info a few days before the appt.


This may have taken 5 minutes to read (and if I were you I got the idea in the first few sentences and skimmed the rest) but over two hours to actually perform.  (OK I may or may not have taken a couple minutes off to make a bowl of oatmeal and take a couple bathroom breaks, and one to storm in the house, in tears and threatening ot crush someone’s head if Colin didn’t stop me.) 


 Multiply that by about 15 organs and body systems which are all not performing optimally, (and factor in that I really only have 3-5 hours  of productive time available most days.) and you may have an idea how I spend my time.  

I don’t completely resent every minute I take taking care of health care business.  But the vexing fact is that during these two hours I did not make any money, nor did I progress toward any personal, lifelong, fulfilling goals, deepen a personal relationship, make someone’s life better, fix anything, or, well, seem to do anything, really.


Next up:  Schedule an MRI and an MRA.  This is gonna be easy, right?







First Post

Where Did You Hear That?  The other use of Facebook- melting the glacier of medical information via on-line networking.


“And what is your source of this information?”  I’m asked again by someone in a white lab coat.


I’m reticent to give up my source as a facebook group I’ve been hanging out on for over two years now, since I was diagnosed.


But here’s the thing.  Think of all medical knowledge as a vast glacier.  Some knowledge has managed to siphon off as water already.  But most of it still lay well hidden, packed beneath the surface, still as ice until someone innovative manages, one way or another, to dig it out.


What has melted flows into a giant lake.  That lake splits into several bodies, represented by different countries and language groups.  Researchers in Japan gathered this, Europe that, and the US, that.  Anecdotal evidence shared by only those who speak the same language or happen to meet at a conference.  Smaller bodies.


Within, say, the US, there are competing drug companies which keep knowledge from another for proprietary reasons.  University researchers guard their knowledge like the life rafts upon which thier careers stay afloat, which it is.  Dial the flow down another notch.


People go to medical school.  They are taught by people who may or may not have ever been to one of these lakes.  The water flows through ever smaller cracks and crevices.


Each human brain has only so much capacity.  Now the water is flowing through a tube as small as your kitchen faucet.  That medical professional naturally has personality quirks and flaws, bad days and good days, and has only fifteen minutes to spend with her patient.


Trickle, trickle.


As I walk away from my appointment, I realize how, in that fifteen minutes, (actually seven by the time we’ve  exchanged pleasantries and taken my blood pressure, ) I forgot to ask at least three very important questions, and neglected to disseminate a couple pieces of information about myself which may have been relevant to the discussion.


Drip.  Drip.  Drip.


And yet this tiny slice of the information available has a potentially huge impact on me.  What should I eat?  Which medications do I take to help myself?  Which surgical approaches will I consider?  Will I be able to get up on the morning, how much pain will I be in and what will I be able to do then?  Where will this condition be in my body, in 20 years? 


A few months ago I heard about an effective pain remedy through one of my on-line groups.   Four doctors said no, mostly because they simply aren’t familiar with it.  The third (the one whose specialty this was in, and should have said yes) was downright aggressively mean, condescending and obnoxious about it.  My on-line group cheered me on.  They said keep going, someone will prescribe this for you.  Number five was a charm.  Not only did she prescribe it, but gave me several options, and did it with compassion.  And it did help.


Belonging to on-line groups is my act of rebellion against this inevitable contraction of knowledge and information.  My groups are attended by people in Finland, France, Canada, and Indonesia.   Collectively we have seen hundreds of MDs, read hundreds of studies and papers, and felt symptoms, in detail, over time which our MDs cannot.  Sure, most of us are novices to the medical field.  But we’re damned motivated.


Together we can begin the work of quilting together the information we have received, forming the beginnings of a tapestry of information which can help us.  We are swimming upstream, back to the lake of knowledge, back to chip at the glacier with pick-axes if we have to, ready to do anything, try anything to help ourselves, our loved ones, and all fellow information-hungry sisters and brothers everywhere with the awareness and understanding we need.


I understand it is my obligation to learn everything I can, and re-disseminate it by whatever means I have at my fingertips.  And disseminate it with, if at all possible, compassion.  Empathy is a commodity MDs are mostly too strung out for time and emotionally drained to deliver.  Yet we can, I can.  We must.  Because when it comes to healing, it’s the soul food which ranks at least as important as the water of comprehension we drink.


The medical community adapts such philosophical change a little faster than the Vatican, but it’s not winning any speed contests.  I still feel that nugget of judgment when I tell an MD how I’ve managed to steal away information maybe once held sacred to a few.  But recently several MDs have joined my groups, and I am happy to be a fly on the wall as they discuss, volley for intellectual position and debate the subjects which, ultimately may make or break my life.


I will no longer apologize for my on-line groups.  I will leverage them against the dams between me and what I need to know.  My hope is that with such contributions, we are able to open many tributaries flowing downstream toward the people who need it.





Thirteen Doctors

“FYI, you’re the fourth doctor I’ve asked for this prescription,”  I say. 


“Who else have you asked?”  Dr. Silver says, as though he would know any of them.


“Well, among others, my Uro-Gynecologist.”


“Well, she should be the one to prescribe these, right?”


“Right, but she said …I don’t know what she said, her logic was circular.  I don’t think she was entirely unfamiliar with them.  But she said no.”


“But she could have spent five minutes researching it and done it.”


“Yeah.”  I wait for him to spend five minutes researching and pull out his prescription pad.  He pulls out a pen.  I am hopeful. 


“Now, where is it you’re going?  You know, the airlines are getting pissed off.  People are saving money by – now what was it?” 


He uses the pen to start drawing on the examination table’s paper lining.  “People are buying plane tickets to, say, Seattle -”  he writes “Seattle” and draws a line from generally East to Seattle.  “Then, they go to L.A..”  He makes a dot for L.A., and draws a line to it.


He scrunches up his forehead.  “No, that’s wrong. “  He scratches out his drawing with his pen.  “They buy a ticket to Seattle, no, L.A.”  The pen has a mind of its own now, I may have to scoot over soon to make room for his meandering mind.


On the Upper East Side, this office is about an hour from I live.  And I think the minimum I’ve waited to see the pain specialist here is 90 minutes.  I know I have fifteen minutes, max, with this doctor.  I feel time slipping away like floating spaghetti noodles through a fork.


“Oh, yeah”  He’s finally grasped his concept, much happier now.  “They SAY they’re going to L.A.”  he circles L.A., which he’s come to for about the fifth time, “but they get off in Seattle – pack a day pack, that’s it – and they get a better deal!”


I’ve got to find a way to get control of this conversation.  I figure ADHD doc needs visual stimulus, so I hand him copies of my most recent MRI reports.  “Here,”  I apologize.  “I tried to send these via email, but your front desk says the systems are down, so I had to waste paper.”


“Down?”  He seems puzzled.  “Oh, yeah that’s by design.  I hate technology.  You know, my wife just called the front desk to tell me she texted me three times.  Three times!  And what am I supposed to do?  Not see patients? “  He gestures to me.  I’m thinking he could probably use time with patients more efficiently by talking  less about airline tactics, but as the patient it may seem ungrateful to mention it.


“I mean, and you know, more and more people are coming to me with, like, a disk, and they hand me this disk and I say, am I supposed to go in the back, where it will take me twenty minutes to even see anything…”


“I almost brought you the disks.  I’m glad I didn’t.  I’ll stick with just the reports.”


“You know at NYU they’re giving these, um, reports, with like, just a few photos…let me go find one.”  He swishes out of the room like so many leaves under the force of a determined broom, and he is gone.


This is how I spend my time.  This is number 11 of thirteen, I remind myself.  Thirteen health practitioner appointments in twelve days.  It’s a marathon, not a sprint.  Breathe deeply.  Keep expectations low and you will not be disappointed.


He swooshes back into the room.  Really I feel sorry for this guy.  This man, who is still seeing patients at 6:30pm, whose wife is also competing for his attention, which is divided into so many slices they are but pinpricks on a canvas.  If they form a coherent image he is not aware of it.  He struggles to keep up with demands, and this fractured, scattered brain is his coping mechanism.


“Here,” he brandishes the film proudly.  “I keep the X-ray light on the wall, you know, to keep my older patients comfortable.  You know how doctor offices used to smell?  Like ethyl alchohol?  Or wait, no methyl alchohol…maybe you’re too young, do you remember?”


Two more, I think.  And then I plot my escape.

For older posts, see the old blog at:







Photos by Emory Collinson        © Niki Naeve 2015