Thursday, January 26, 2012

Visit with a DOCTARD! Brilliant!

I love this!  So many of us with under-diagnosed illnesses go through this.  I am going to stop saying POTS is rare - because more people have POTS than MS or Autism.  Our doctards need to become DOCTORS and get educated!

Sunday, January 22, 2012

An Open Letter to All Doctors (Regarding the Anxiety Bias)

Dear Doctors:

I am a female.  I have an illness.  Because of many of your biases towards young women, women in general, and POTS (Postural Orthostatic Tachycardia Syndrome) sufferers, my illness was blamed on anxiety for many years.  This not only happens with my particular illness, but with many lesser known and rare illnesses.  I am not only speaking to you male doctors who are guilty of this, but the female doctors as well - who have been just as condescending and dismissive as their male counterparts.

My illness is categorized as a dysautonomia. My form of dysautonomia includes POTS (Postural Orthostatic Tachycardia Syndrome), and a few others that I am now finally being tested and treated for.  It has been an almost decade long journey, and because of this "anxiety bias", I am just now getting the correct testing and treatment.  I had to let my illness progress and be so sick that I was hospitalized for almost nine months and almost died for most doctors to take me seriously.   When I first came to you for help, I was experiencing REAL symptoms.  I have no history of anxiety, depression, or any mental health illnesses.  Though - even if I did, you still should have listened to me.

After the first few years of being told I had anxiety (even with a positive Tilt Table Test for POTS), I had read the medical journals and literature, and self diagnosed myself with dysautonomia.  I brought this information to my internist and he agreed with me.  He sent me on to find treatment from doctors he thought could help me.  Unfortunately, I was told bluntly, "If you really had dysautonomia, you would be dying the hospital," and , "you just have anxiety and panic attacks, " and - my favorite - "you are just going to have to learn to deal with being dizzy and your heart racing, it is just anxiety."  These are exact quotes, all from local Neurologists, who I have found to be notoriously unhelpful, degrading, cold, and unwilling to help find the cause or treatment for my symptoms.  I have seen 8 local neurologists, who have all either dismissed me, or have told me, "I don't want to deal with you, dysautonomia is too complex, and I don't know anything about it."  These things were said after I had a positive Tilt Table Test, the standard for diagnosing POTS.

Many of my daily symptoms are similar to those of anxiety.  Anxiety responses are controlled by the same nervous system that is malfunctioning in me.  This is an except from the journal article Postural tachycardia syndrome and anxiety disorders  (by Svetlana Blitshteyn, Clinical Assistant Professor of Neurology, State University of New York at Buffalo School of Medicine and Biomedical Sciences):

"The results of the study demonstrate that patients with POTS do not have an increased prevalence of anxiety disorders compared to general population, thereby challenging a common misconception that patients with POTS are more likely to have anxiety disorders. The study by Raj et al. is in agreement with two other studies that differentiated POTS from anxiety disorders. One study showed that excessive heart rate response during a tilt table test was not due to anxiety (2), and another one demonstrated that symptoms of POTS were phenomenologically different and clinically distinguishable from panic disorder symptoms (3). Taken together, the three studies provide evidence against a hypothesis that POTS and anxiety disorders are linked either by association or causation. "

I have a release of norepinepherine (adrenalin) in response to my blood not staying where it is supposed to, and pooling in my extremities and abdomen, therefor dropping my blood pressure.  The release of norepinepherine and catecholemines in an effort to cause my vessels to constrict in POTS itself causes anxiety - through sympathetic over activity among other things.  Even changes in blood flow in the heart can result in feelings of fight or flight. Since anxiety, panic and POTS all involve the same branch of the autonomic system, the feelings are very similar.  But the test results do not lie.  I had a positive tilt table test back in 2003, and it was ignored on many occasions.  I was dismissed by many of you, especially Neurologists, and told I couldn't possibly be as sick as I was feeling, and that it was all in my head or due to anxiety.  

Throughout the almost decade of you giving me blank looks, telling me I am just having anxiety, and being forced to try medicines for depression and/or anxiety that I reacted very badly to, I have in fact, developed secondary anxiety (which I was diagnosed with in 2006 as being secondary as a result of my medical conditions).  I was not listened to in the hospital in 2011 when I had been diagnosed with 5 DVTs from the negligence of a PICC line, and I was having severe suffocating chest pains.  I was told it was "just my POTS and anxiety".  After a few days and trips back to the ER, the doctors involved finally discovered I was having multiple bilateral pulmonary embolisms, and had a 2 cm blood clot in my right atrium.  I knew something was wrong, but you did not believe me, and it almost killed me.  I also have a chemical intolerance, and react very strangely to many pharmaceutical drugs, and the reactions can be scary.  I have developed random reactions to foods and other allergens - for which I am now being tested for Mast Cell Disorders (another rare and under diagnosed group of illnesses), but once again, I was told I am over-reacting and anxiety is to blame.  I have told you about this time and time again, and am very rarely listened to.  The combination of these issues: POTS, frightening reactions to medication, anaphylactic reactions to allergens, and almost dying last year, have in fact caused me great anxiety.  I think they would cause YOU great amounts of anxiety as well.

According to an article published in The Journal of Neurology and Neurosurgical Psychiatry by Raj et al, "Patients with postural tachycardia syndrome (POTS) often appear anxious and report inattention. Patients with POTS were formally assessed for psychiatric disorders and inattention and compared with patients with attention deficit hyperactivity disorder (ADHD) and control subjects."

The results and conclusions of the study:
"Results: Patients with POTS did not have an increased prevalence of major depression or anxiety disorders, including panic disorder, compared with the general population. Patients with POTS had mild depression. They scored as moderately anxious on the Beck Anxiety Inventory but did not exhibit a high level of anxiety sensitivity. Patients with POTS scored significantly higher on inattention and ADHD subscales than control subjects. These symptoms were not present during childhood.
Conclusions: Patients with POTS do not have an increased lifetime prevalence of psychiatric disorders. Although they may seem anxious, they do not have excess cognitive anxiety. They do experience significant inattention which may be an important source of disability"

I am not the only one. Time after time, women, POTS sufferers, people with rare diseases, and younger girls are told anytime they have an elevated heart rate, blood pressure issues, or random unexplainable neurological or autoimmune symptoms that they are just stressed out, have anxiety, or in the case of the New York teens recently in the news - mass hysteria.  Anxiety is a real disorder and issue for both men and women, and must be investigated - IF NO OTHER CAUSES FOR SYMPTOMS ARE FOUND.  The causes must be tested for first, not just blamed on anxiety.  Patients experiencing sudden onset of panic attack like symptoms should not be dismissed, and should be thoroughly evaluated for POTS and a number of other illnesses and disorders.  If you are incapable of testing for these things, please send your patients to a specialist who is experienced in dealing with them before dismissing them as having anxiety. 

As a doctor, you took an oath to "do no harm".  The persistent or even occasional dismissal of your patients due to anxiety like symptoms is doing harm.  Being cold, condescending, and unwilling to help guide a patient to the resources needed for them to obtain treatment, is doing harm.   Being unwilling to sit down in front of a computer or your thick medical dictionaries and look up new research relating to your patients symptoms is doing harm.  I have luckily found a group of wonderful new doctors willing to do whatever it takes to help me regain function, but many patients have not. 

I challenge all doctors out there to set your egos aside, and commit to finding answers for your patients, even if it takes a little extra time and work.  It may save them years of suffering and increase their chances of recovering or going into remission.  It may even save their life.  This is, in fact, what you pledged to do when you became a doctor.  So please start doing it.

Claire Martin
Founder: STOP POTS Virginia
Owner: Bella Flora

Wednesday, January 18, 2012

The Year I Spent In A Room Not Complaining (Finding the Amazing in the Suckiness)

SO, in my first post in this now two-parter, I did a lot of focusing on the bad events and painful things going on since my health took a nose dive a year ago.  In all honesty, I feel like a huge weight was lifted in making more public many of the issues with my illness and those events, so it's out there and I don't have to put on a happy face if I'm struggling.  I am usually coping fairly well I think, and most days I'm a happy camper and have accepted my situation and am trying to deal, but there are days when I now allow myself to feel crappy and cry and be upset and I don't feel guilty about it because "there are others worse off".

My day to day life is definitely not miserable, and though I do struggle, I'm usually a pretty happy silly person.  I deal with anxiety and fear by making jokes.  They may not be good jokes, but I like laughing and seeing others laugh, so I try.  Anyone who knows my Dad knows where this comes from, I grew up with an earful or corny joking (see what I did there???).  And my life is truly filled with many reasons to be thankful, many of which would not have been possible without the downward spiral of last year.  I already mentioned my mantra: "I do not have cancer. I do not live in a hut. I am not in the Congo. I have insurance." and I repeated things like that multiple times a day, sometimes hourly.  And they are true. And they kept me grateful, and sane (kind of sane at least) through most of this whole thing.

But the most incredible thing to come from this whole experience is my daughter.  She is our miracle baby, in every sense of the cliche phrase.

Wednesday, January 11, 2012

New Virginia Support Group - STOP POTS Virginia!

Due to the complete lack of local resources, I have started a group called STOP POTS Virginia.  If you are dealing with dysautonomia and or POTS in VA, or elsewhere, please connect with us!

My goal is to provide tools for patients when dealing with doctors and medical professionals who do not know about POTS and Dysautonomia. Find tips, resources, and ideas for keeping your sanity and getting the treatment you deserve.

On Facebook: STOP POTS VA page

See all the pots? Get it? 

I have big plans for launching an awareness campaign aimed at doctors, schools, and the general public (through media and literature) so others do not have to go through what I have.  I have had POTS for almost a decade, and am just now starting to find doctors willing to hep me find out why. Not acceptable!  There are too many of us out there looking for answers, being misdiagnosed, and treated like we are nuts - all because of ignorant (but sometimes well meaning) individuals. 

If enough people connect, may start a closed Facebook group for VA folks, let me know if you are interested.  Hope to hear from you! 

Monday, January 9, 2012

How (not) To Open a Business in Norfolk: A Story of Lofty Dreams Gone Bad

This is a short version of why I had to close one of my businesses (I was a partner) that was in the start up phase.  I truly believe if my partner had not been left to deal with the mountain of work on her own while I was laid up in the hospital dealing with POTS, clots, and pregnancy - we may have had a different outcome.  With two of us working on everything, we may have been able to do some of the things I mention in the article since she wouldn't have been overloaded with the mountain of work and the coordination needed to get something this big off the ground. But, as always, things happen for a reason, and it was not meant to be.

I'm hoping to provide some "lessons learned" and tips that can be applied in any City/State when opening a business.  Enjoy :)

How (not) To Open a Business in Norfolk: A Story of Lofty Dreams Gone Bad 
Published on

How (not) To Open a Business in Norfolk: A Story of Lofty Dreams Gone Bad

My former business partner and I had found a location, an investor, and had gotten to work opening a loft on Granby to hold events.

I should be exhausted right now after a weekend full of events. But I’m not. Our business never had the chance to get off the ground.

What we should have done, and what you should do if you are opening a business in Norfolk:

1.  Go to SCORE for free mentoring.  Anyone starting a business needs to make the trip to their website and set up an appointment. We had it on our to-do list, but were both running two businesses at the time, and kept putting it off.  Make this a priority. Look to others with experience for advice and double check that you are doing everything right. Best of all – it’s FREE.  They have everything from business plan templates to financial worksheets. But that is not enough! Go there and find a mentor. They will help walk you through the process, and direct you to the resources you will need.

In hindsight, this alone may have saved our business. My partner and I are very creative people (both designers), with our business experience being limited to a more Mom and Pop dynamic, nothing this big. Once we decided our business location, I had gone online and downloaded a template for a business plan from SCORE and gotten to work. My partner had been researching lofts and area venues while I crunched numbers, and we came up with a plan based on this specific building as our venue. It was perfect! A gorgeous historical building on Granby that had been gutted and revitalized, retained its historical charm, and renovations were made to order for tenants. They showed us a top floor, a new addition to the building, and our jaws immediately dropped (mine almost dislocated). Views of the entire skyline of Norfolk and the water! Glass walls! Exposed loft style ceiling! NOBODY had a location like this.

A view to build on.
My heart pounded and I tried to contain my need to do a happy dance in front of the men in suits. They were willing to remodel it to make it work for us, and assured us that if we could find the money, they could make it happen. Then the words “roof-top deck” were uttered, and – well – I almost passed out. Being able to have your wedding, or an art show, or listening to music, all while sipping a cocktail with a killer view from the roof through glass walls on cool mod furniture??? YES PLEASE.

So we started negotiating with the developer and realtor, and coming up with ideas. We had a solid 50 page business plan that I ignored my family for about 40 hours straight one weekend to compile. We found an amazing investor after shopping around for anyone willing to back us. We thought we were doing it all right. But we never made the trip to SCORE.

2.  Go to the City to Norfolk Directly to verify what is required in terms of building codes, permits, and any other bureaucratic issues that may need to be cleared before opening.  This applies for any industry and any size business. Find them here. Our landlord/developer claimed to be “in” with the Norfolk City people, and owns a few dozen properties in the area, which we researched and verified, so we believed what he told us.

We worked out the details, had meetings upon meetings, contacted local groups, businesses, community leaders, and press. We held an open house and polled past clients and colleagues about the space. Everyone was super stoked, our “Urban Chic” design for the space was pretty amazing (if I do say so myself), not to mention the kick ass rooftop deck. The landlord assured us that all permits were in place, and all the kinks had been worked out. We had hired a lawyer to review the documents, and thought we were on our way. This was a big mistake, and ultimately the downfall of our business.
Let me repeat: Contact the City directly, with the help of a mentor from SCORE.

3.  Document everything. And I mean EVERYTHING. Every meeting, every promise made, every bit of progress made on the project. Take pictures, write things down, record meetings, do whatever you need to so you have proof if something does not happen the way it was supposed to. We documented some things, but not everything. We had built a friendly relationship with everyone involved over the course of a year. That is *not* enough. You need to resort to the good ol’ adage of CYA (cover your ass). Especially if your livelihood is on the line.

4. Build flexibility into your business. In our specific case, we modeled our entire business around the location, because we loved it so much and knew others would love it too. Before selling, promoting, or buying anything for your business, make sure you have tied up all loose ends and have completed the aforementioned steps. Our business model would not have worked in any other location due to its uniqueness, and this proved to be an insurmountable issue. Have some flexibility in your plan, in case bumps in the road come up, because they will.

5. Have a back up plan. If your business consists of just you, or is a partnership – have a back-up plan in case health issues, family issues, or something catastrophic occurs and you are unable to fulfill your obligations. Unfortunately, right after the papers were signed, and after we had started booking weddings, advertising, and buying stuff, I ended up in the hospital with an extremely high risk and unplanned pregnancy that almost killed me (due to Pulmonary Embolisms and a disorder named POTS that is normally very mild). I was in the hospital until the baby was born, almost the entire 9 months. I was there for and orchestrated much of the start-up phase of the project – but completely left my partner out to dry after construction really kicked into high gear. She did an amazing job taking care of the business, and dealt with the logistics of the construction, booking events, and purchases – and at every step was assured that all permits were in place and everything was fine.

Then, out of nowhere (with me still in the hospital), she was informed by the developer that our capacity requirements were denied by the City… that he had gone to his 5th and final meeting to try and get the capacity limit increased, but the City wouldn’t budge.

Would have been nice, eh? (Pic | Andi Grant)

WHAT? We were flabbergasted. With a capacity limit of 50, we couldn’t hold any events. Our business was done. We had some back and forth with the developer, and unfortunately it was not a fixable situation. It was horrendous – our dream business that we had sacrificed so much for, lost time with our families for, and had grand dreams of being our big break– was suddenly finished. Now we are stuck with a whole lot of wasted time, lost money, and useless marketing materials. I was really looking forward to those nights on our rooftop deck, drinking hipster drinks, listening to the latest electro-indie, ambient house, dubstep, live jazz, and whatever else. I wanted to see the local charities, designers, and artists host their shows with our City skyline as a backdrop, and amazing sunset views from the roof. I wanted to help design unique weddings and create memories for local couples…
But it was not meant to be. The sad thing is, if we had known about the issues with the Norfolk codes, and had a mentor, we could have rallied the troops, and used our connections in the community to find a solution. So learn from us, and somebody please open a loft I can go drink hipster adult beverages at while listening to cool music ASAP.

Help the AltDaily business continue. Please considering giving.

Friday, January 6, 2012

The Year I Spent In A Room Not Complaining

So today marks the first day a year ago that I became seriously, life changingly ill.  I was ill before, but it was manageable. But this day last year my entire life changed, and it has not been pretty.  I debated whether or not to publish this, I've been writing it for a few days as this date loomed, but I know there are others dealing with these same issues, so maybe it will help someone.

The Year I Spent In A Room Not Complaining

My son and I snuggling with a bag of chips.
Not to be a downer, but I have to say that 2011 sucked majorly. But it also brought great joy, and I have tried to focus on that as much as humanly possible.  The birth of my daughter was nothing less than a miracle, and she is healthy and thriving.  I have an amazing family.  I have tried to remember how good I have it compared to the majority of the world, those living in harsh conditions in third world countries, people with terminal illnesses, the homeless, etc...

But really, I have been worn down by the events of this past year, and my current state of health.  And the fact that my only outings from beyond the four walls of a room have been to see doctors.  I have spent the entire year either in a hospital room, a bedroom, or on a good day - a living room. I've been on our balcony 4 times. Needless to say the four wall situation is closing in on me and had gotten old a long time ago.  Putting on a happy face and being fairly silly and upbeat is my natural tendency, not in a fake way, but because I usually really truly am grateful for my life and everyone in it, and I enjoy trying to make others laugh. But this has been the trial of a lifetime, and I have had to fight with every ounce of my being to stay sane, let alone positive.  So I am tired.  Physically, mentally, spiritually, and emotionally.