POTS, Clots, and Closing My Successful Business

(Part 1)

I've had a lot of people inquiring about Bella Fora services and asking in general what happened to me (the owner - Claire). That's actually very flattering, I love that I am friends with many of my past clients and have built relationships with them and other vendors in the industry.  In an effort to write everything down cohesively, and out of a bit of selfish I don't want to have to keep typing this-itis, I've decided to share publicly what has been a very tough battle for me (and my family).  Hopefully this may educate people as well about my disease, of which very little is known, and even less is publicized.

I have developed a real affection for fainting goats.  This may seem strange, but you will understand why as you read on. I feel a tremendous connection with them, see a great short video of them in action (or inaction) here.
I have a disorder named POTS - and no - not the smoke-able kind, or kind you cook or plant pretty things in.  It stands for Postural Orthostatic Tachycardia Syndrome, and there is a great description here. It basically means your body doesn't compensate for gravity well, and upon standing (and sometimes sitting up), your heart rate increases by at least 30 beats.  Most people with POTS have lots of other issues as well, all grouped together under the umbrella term of dysautonomia. That heart rate increase - and usually a dramatic change in blood pressure to compensate for the blood not circulating right when changing position - causes dizziness, chest pain, exercise intolerance, fainting, extreme fatigue, and all kinds of other fun stuff.  I started having issues in 2002 while in graduate school, and my stress level was very high.  I have no history of anxiety or depression, and actually kind of thrive on stress, as I'm very Type A.  I did have major spinal surgery in '99, which we believe may have triggered my weird symptoms, as it wreaked havoc on my nervous system, and took a long time to recover from.  But as they say, "that's a whole other story".

My two adorable puppies!
My first munchkin (love!)
After many years of frustration with local doctors not knowing what the heck POTS was, I had resorted to just "dealing with it".  Life was busy; had a child, husband, house to keep up, owned a VERY busy business, two dogs, and maybe time for friends once in a while.  So I learned how to cope- my symptoms were usually fairly mild, with occasional flare ups, or having to recover from lots of hours of work, at first as a teacher (which I had to stop mid-school year due to my disease), and then from big events/holidays with my business.  But it was mostly tolerable.   I had issues at random times, but took it as it came and tried to keep living and doing as much as possible.

Then.....<dun dun duuuuun> I got pregnant.  By the end of Dec 2010 I knew something was wrong.  I was having to pull over while driving and having bouts of extreme dizziness & feeling like I was going to pass out, my heart rate went bonkers, and I felt totally dehydrated.  I actually had to sit in front of my friends house for over 2 hours before I felt well enough to drive at one point (she kept me company- thanks Lindz!).  Then I found out that I was, indeed, knocked up.   This was not planned, and came as a big surprise, as the timing was REALLY bad...my husband is a teacher and it put the due date right when school started (most teachers try and time births around summer break), and we were in the middle of opening another, even bigger business.  I was going a million miles an hour, had just added a very successful linen rental portion to Bella Flora, and moved the business into a new showroom. 
Oooooo.....pretty new linens!
More pretty linens and flowers!

Sooooo....about a week after finding out I was pregnant and going to doctor, we decided to wean me off the only medicine I was taking due to the danger to the baby.  I had already had an increase in "I feel funny" symptoms, and had to put the brakes on a bit of my hectic lifestyle.  Then, as if a switch was flipped, I was knocked on my butt.  Literally.  On a Sunday at home, while feeling pretty crappy already, I jumped up to pull my then 2 year old son down from the kitchen counter he had climbed onto, and started blacking out.  My heart rate shot up, so I did the usual - laid down on the couch flat, and did some deep breathing.  My heart continued to race, and my whole body started to shake, and I still felt like I would pass out.  We finally decided after 30 minutes of this to call 911, as I could not get up and figured I may need some IV fluids.

I went to the ER, got some fluids, and they sent me on my way, saying I was dehydrated.  I was home trying to just cope for the next two days, when the vertigo kicked in.  WOW.  I have never experinced extreme vertigo before, and wouldn't wish it on anyone.  Well, that's not true - maybe Hitler, Bin Laden, and this bride that never paid for her damaged chair covers.  It was indescribable, and coupled with my other dizzy lightheaded feelings, weakness, flu like symptoms, and general panic at the fact that I was not able to function with so much going on - or care for my toddler, it was horrible. I called the Obstetrician, and they told me to go to the ER.  So I did.

Same deal - was told I was probably dehydrated, they gave me IV fluids and some meds for vertigo, and put me in a dark room to see if they would work.  No such luck.  I was admitted to the hospital, and this was the real start of the mostly downhill roller coaster ride that was 2011. 


(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.


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