About Me/Contact Info

***Update as of June 2013. I am currently dealing with a decline in my health, and am no longer using the STOP POTS email. I need to take some time off from chatting with you all to focus on my health and spending time with my family, as well as Dysautonomia SOS. Thanks for your understanding. Please see our Support Groups page, and reach out to others through that many groups available online.   

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Not trying to be narcissistic, but I figured you may want some background info on the creator of this site.  So here it is:

As of January 2012, I am a mother of 2 and a wife of 1. My son is almost 4, and my new daughter is 4 months old. Right now they are my world, along with my husband, because I am homebound - and often bedbound- due to POTS and a slew of other fun medical issues. My educational background and passion is marine biology.  I worked in a number of research labs while at my University, co-authored and wrote for scientific journal publication, and aas a paid scuba diver in the Keys during a stint in graduate school with every intention of getting my doctoral degree before having to leave mid semester when I first started having tachycardia and dizzy flares (in 2002/2003).   I eventually found out that I had come down with the "rarely known" disorder POTS, and had to cut back on the manual labor and stress, (working on a thesis project based entirely on an underwater resaech site doesn't go well with heart problems and passing out) so I started teaching high school science.  That ended up increasing the manual, emotional, and mental labor and stress, and I had to leave after a few years when my illness flared up dramatically in 2005/2006.


I then figured I'd pursue my other passion - art and design - and opened a floral design business (Bella Flora).  Once again, I thought this would decrease my stress level and be relaxing and therapeutic, "Ohhhhh, arranging flowers must be so fun and relaxing" is all I have heard for years.  Well - WRONG.  Owning a business is stressful in itself, then factor in dealing with brides, the craziness that is Valentine's Day, and insane work hours because the product you're selling dies quite quickly, and you have STRESS. And lots of it.  Don't get me wrong, I love (and am pretty good at) floral design and design in general, it's just a lot of work and stress.  I've kept my old blog as a portfolio, and use it now to raise awareness as well (you may see some duplicate articles between the two sites). 

I had a period of non-POTS heaven while pregnant with my son, and while I was nursing him - lasting almost 2 years until symptoms began to flare dramatically again.  My business had taken off, and was VERY stressful, and I was on my feet chasing my munchkin and running my shop, and was trying to handle new and old symptoms that decided to pay me a visit again.   This became too much.  My family has always come first, I was lucky enough to have a nanny and a room in my shop set up so my son was with me and not in daycare most of the time for his first few years.  But my symptoms continued to increase, until I had to move my shop and get rid of the retail portion and focus on weddings only.  I had just relocated to a new showroom and added a linen rental line to my business, and had our biggest most successful year to date.  But I was overworked, massively POTSy feeling, and not able to devote all the time needed to Bella Flora because I refused to miss out on time with my son and husband and struggled with my health.  I could work a 16 hour day setting up a huge event, but would crash and get physically ill afterwards.  There was a couch in my showroom, and LOTS of seating options :)

Then, in an attempt to get into a business where we could work smarter, not harder...I was in the process of opening an event venue for weddings, events, music, art shows, etc... with a partner, and we had an incredible investor, a great location, and had booked about 20 weddings/events - when it all crashed because of a slime ball landlord that lied to us about permits.  So that equals STRESS.  This overlapped with me being hospitalized for most of 2011 and having to close the aforementioned businesses, almost dying from blood clots and embolisms related to a PICC line, and almost losing my daughter during a crazy pregnancy (thankfully she made it through unscathed). More stress. So basically I subconsciously love stress.  Did I mention that I can be quite silly and sarcastic too?  Well, now you know!

I previously stated that I am home-bound at this point, and that is due to my pregnancy in 2011, which I am still recovering from.  I was in bed for 9 months, almost all of which was spent in the hospital.  I'm in the process of writing about it in detail in the series POTS, Clots, and Closing My Successful Business.  Dealing with multiple hospitals, doctors, nurses, insurance, and the general non-knowledge of how to be treated when you have POTS has inspired this site.  I hope to help others avoid what happened to me, because it almost killed me, and now I am non-functioning as a result of bad medical practices by mostly well meaning, but ignorant doctors.  My daughter was born health, happy, and is gorgeous, and we hang out all day at home while my husband works and my son is in preschool. 

I love hearing from and connecting with others - feel free to contact me about the site, with questions, suggestions, or anything else as long as it's not spam :)  Find me on Twitter and Skype as @Eklayre, or shoot me an email at stoppotsvirginia@gmail.com.

We also have a Team Fight POTS collaborative facebook site that I organized linked in with other great facebook sites and bloggers dealing with POTS, so go like us!

I hope you enjoy the blog!

 

13 comments:

  1. Thank you so much for this site. My brilliant, beautiful daughter has struggled with undiagnosed POTS from about age 10. It worsened during her stressful college years, and we finally got a POTS diagnosis her junior year by going to Vanderbilt Medical Center. She barely managed to graduate from college, due to her POTS, and has lived at home with us, incapacitated, ever since. We continue to struggle with her health, and have found a good specialist (only 8 hours away...), but he has POTS, too, so it's a challenge. Anyway, your website is one of the best we've found. Keep up the good work, and God bless you.

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  2. Hi and I am so grateful to find your blog! I live in Richmond VA and have been diagnosed with POTS physiology. I think I may have what is called Mitral Valve Prolapse Syndrome as I do have MVP with moderate regurgitation. Anyway, it is still dysautonomia and I have the same type of symptoms. I look forward to reading your entire site. THANK YOU!!

    Angela

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    1. Angela, hopefully you found our VA Facebook group, here's the link:

      https://www.facebook.com/groups/DPAS4VAMDDC/

      There are some great doctors in Richmond treating POTS, I hope you have found them. Thanks!

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  3. in Sept 2009 my son had swine flu after several weeks we realized something else was wrong and like others it took 3 years to get a diagnosis of POTS! I would like to try and start an area support group I am in Winchester VA area any ideas, thank you again for this site!!

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    1. Hi Eileen,
      Email me at DysautonomiaSOS@gmail.com, I will help you with some ideas for starting a support group - and thank you for your willingness to do so! We need more!
      ---Claire

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  4. I have been diagnosed with POTS 2 months ago but have had all the symptoms and went undiagnosed for 11 years. I am thankful for your blog because it makes me feel like I am not crazy and alone. I have been on bed rest for the last 3 months and my neurologist just told me he can't treat me anymore. Although I can't use the list of doctors you have because they don't take my insurance it gives me hope that there are doctors out there that can help. We are military and we are living near Alexandria, VA. Thanks so much for sharing your story.

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    1. Have u tried VCU in richmond Dr.sica is a great doctor.

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  5. I live in VA beach and recently diagonised with pots and autonomic neuropathy syndrome.I am having a hard time dealing with it.i was wondering if there are any local support groups??

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  6. I would love to chat with you and get your opinion kaycies.cakes@hotmail.com

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    1. I no longer have stop pots emails, as is explained in my last post because I am bed bound and very sick right now.

      The nonprofit wrist bands take 1-2 weeks to process and ship. Our volunteers will be mailing a batch shortly I'm told. I'm not sure what's going on with the info@ email, I will check. Thank you.

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    2. Thank you so much for your attention, I do appreciate it. I am so very sorry for your decline in health. I completely understand, as I too am a sufferer.

      Anne

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