Pots, Clots, and Closing My Successful Business (Part 2- Let the Humiliation Begin)

So....when we left off from my previous post (Part 1), I had just been admitted to the hospital in Virginia Beach because I couldn't see straight from crazy horrible extreme vertigo, plus all my other POTS symptoms gone wild (lightheaded, heart pounding, starting to pass out when I sat up/stood for too long, flu-ish feeling). I was very hopeful after talking to the internal medicine doc, he assured me that we would get to the bottom of this, and if he had to contact the neurologist I saw at UVA we would do so. Meanwhile I received a low dose of IV fluids, and had an MRI scan of my head with a fancy ear imaging portion to try and figure out the vertigo portion of this, which I never had in my life to such an extreme. I was also informed that there was no cardiologist or neurologist to see me at this particular hospital (awesome), and they would try and find an ENT for my vertigo.   They continued to try a few drugs for the vertigo - which didn't work, and seemed to focus on that, since no one had any clue how to treat a pregnant chick with POTS - so lets just ignore it.  Nice.

Karate chop to face (beer bottles are doctors that wouldn't listen)

I was telling the doctor how dehydrated I felt, and I was "outputting" way more than I was taking in.  That I had been told I may be hypovolemic (low blood volume).  That means I was peeing my brains out, and not drinking enough to justify that amount.  The doctor summarily ignored this, and told me that didn't make sense, that since I was getting IV fluids, I should be hydrated. I was only getting 75cc's and hour, which is not a lot.  That is an espresso sized drink an hour. I have heard this from doctors so many times over the years - "that doesn't make sense" - well, "I can show you the clinical research from Mayo and Vanderbilt that explains IV fluid treatment for POTS patients and the difference between clinical dehydration and hypovolemia".  Doctors with egos (which is a large portion of them) don't seem to like that response.  Being blown off by well meaning but uneducated (in POTS) doctors is frustrating.   Like, "I want to karate chop them in the face" frustrating.

Oooo- trippy dude

Anyways, I struggled through the stay. I fell a few times, tried to hold conversations with visitors, but feeling like you are on a roller coaster 24 hours a day is insane.  The vertigo never stopped, I'd close my eyes, and think, "this must be what astronauts feel".  I never want to be an astronaut.  I had done extensive scuba diving in my early 20's, and loved the feeling of weightlessness and the freedom to move in a gravity free 360 degree environment, it was a bit trippy!  But this was NOT trippy and fun, the motion just never stopped.  No relief.  Everything was rocking, blurry, and my whole body felt like it was rolling and turning.   I tried imagining I had taken a large dose of Mescaline or LSD to make it fun, but it just was not fun.  It was exhausting, and nauseating, and humiliating.  My normally educated sounding, sharp tongued ability to conversate was gone, lost at sea with my gravitationally impaired body.

Oh - and I forgot to mention - during this time, we were signing the final papers for a big business deal involving opening an event venue.  This was a BIG business deal, with partners, investors, bankers, lawyers - and lions and tigers and bears (oh my).  Those lawyers and commercial realtors were coming to my hospital room, and I couldn't focus on them, much less read the paperwork that I had negotiated and worked so hard on. I had a wedding that Saturday, which my wonderful staff and another floral designer (thanks Char and Suzie!) took care of, but I was on the phone trying to orchestrate things constantly, and my stress level was through the roof.  In the midst of that, the doctor decided to wean me off the final low dose of my central nervous system/anxiety medication. Houston, we have a problem. Repeat - HOUSTON - MAJOR PROBLEMS!!! This change in meds made all my symptoms worse, and not just a little bit - but WAY worse.   See, my type of POTS is this thing called hyperadrenic - which means that my nervous system spits out adrenalin (nor-epinephrine) when it shouldn't.  Or, when I try and get upright, to try and squeeze my blood vessels to get the blood pumped back into my heart and head, so I don't pass out.  This puts my body in a constant feeling of "fight or flight" skin crawling, chest pain, out of breath, heart racing fun.  That medicine helped control that, and now it was gone. 

Me with no meds. That's hot.

It was the flu times 20. Plus the vertigo. Plus the POTS heart-racing and blood pressure drops.  Plus the constant thirst.  Plus the 1st trimester nausea.  Having to try and run a business, see people in this condition, and finalize a business deal in this condition - was humiliating.  I had to admit I couldn't do it.  The doctor told me the business stuff had to stop.  I needed to forget the upcoming weddings, impending event venue, signing my life away on a lease that was worth millions, and focus on getting well. Oh, ok - that should be easy.  And with no meds.

And by the way, I was looking pretty hot at this point.  See, when you have a condition that prevents you from being upright, things like washing your hair become a real issue.  So does showering, using a regular toilet, and anything that involves raising your hands above your heart/head, because it increases your heart rate dramatically.  Imagine how you feel after running on a treadmill to get your heart rate up and excercising for 20 plus minutes.  That is how someone with POTS feels all the time (unless they are laying flat), the increased heart rate and dramatic swings in blood pressure are exhausting.  It makes doing the smallest thing feel like you've run a marathon, and having to plan to recover from the smallest activity, sometimes for days.  This was humiliating for me, not being able to do basic things like stay clean, pluck my ever growing eyebrows, and pee without someone watching me. Having to be bathed by a complete stranger because you can't do it yourself sucks.  And even if someone else gave me a sponge bath, I was still exhausted and spinning, and my hair was still not washed.  Washing hair from a hospital bed is a challenge, and most hospital staff just won't do it. I can count on one hand the number of wonderful nurses/aids that helped me wash my hair in 8 months.  They are the angels I remember, the ones who remembered that I was a human, and my mind still worked even though my body did not, and I was embarrassed.  They treated me with dignity and respect, and I will be forever grateful. 

The bedside commode. Every 30-something's dream.

At this point, the only walking I did was with major assistance to get to the bathroom, then I fell while trying to get out of the bathroom, and I was told I had to pee in a bedside commode.  That is a pretty name for a bucket on a stand.  So now I had to pee in front of someone in the middle of my hospital room in a bucket on a stand.  Yay!

Well, almost a week passed with no progress, and instead of calling my neurologist at UVA or sending me to a hospital more equipped to deal with my issues, the hospital and my insurance decided I wasn't sick enough to justify being there.  I had seen an ENT briefly, who thought I had swelling in my ears causing these issues, and that hospital didn't have the equipment to test for it, so I would have to come to his office "once I was better".  His treatment suggestion was to lower my salt and fluids to reduce the fluid in my ears. So basically the exact opposite treatment for POTS. Great. They took me off IV fluids as I hysterically pleaded with the doctor to call someone, send me to the other hospital in Norfolk, do something!  I could not go home like this!  The doctor actually apologized, and said his hands were tied, and he the hospital was giving him a hard time about me still being there. They sent in the physical and occupational therapists for evaluations, and all of them said I was too sick to go home. But home they sent me, with a wheelchair I couldn't sit up in, a walker I couldn't use to walk, and a bucket to pee in - because our health care system rules.

TO BE CONTINUED. THIS IS A REALLY LONG STORY!