Tuesday, May 29, 2018

A Happy Healing Update! Finding Freedom with Neuroplasticity

Why, hello there! It's only been 4 years since I last checked in! 

I've been hiding for a bit during this healing journey I'm going to start blogging about over on my new site, and finally feel comfortable sharing the mountain of thoughts that have accumulated about healing from chronic illness, what's worked for me, and how it's worked so fast.

I'm really happy to report that after all that time, I'm healing. As in, I have zero symptoms! The long list of junk is GONE, and it's stayed gone for months now. I'm out with my family driving, walking, hiking, enjoying the beach, fishing, traveling, and am back taking classes, and more! It's amazing!

A recent anniversary trip with my husband (May 2018), and we walked and hiked everywhere!
How has this happened? I was fortunate to be introduced to neuroplasticity about a year ago, and then in my true science nerd form, I studied up and read everything I could find! Simply put, neuroplasticity is the brain's ability to change. It's how people recover after strokes, regain feeling after nerve damage, and heal from chronic illness. You can find links to the programs I've used over on my new healing blog HERE, and an ever expanding reading list HERE. I won't be answering emails, messages, or anything from this site as I transition over.

I did a few programs designed for healing from chronic illness, and though they were a great introduction, ultimately found them lacking in various areas, but am grateful for the principals they taught and doors they opened. My major, tangible healing started just this past Feb (only 4 months ago) with a neuroplasticity pattern interrupt called Eutaptics/FasterEFT and working intensively with a practitioner, combined with mindfulness principals and other neuroplastic exercises. You can read up on all this HERE. A great book to learn and start with about the ability of the brain to change and heal is The Brains Way of Healing by Dr. Norman Doige:


This post is the only place I plan to touch on my past, as I'm completely focused on being present and celebrating success. I've let go of all the labels that used to define me, and the identity of illness no longer dictates my life or state of mind. It's so freeing! One comes before the other, I've found.

So, whats been happening for 4 years? (insert dramatic pause)

Well, I stopped blogging in 2014, when my ex husband unexpectedly decided he was done, and we separated and divorced. It was a scary time, I could barely feed myself, let alone imagine being a single mom living on my own. I'd spent almost 15 months inpatient in the hospital within 3 years (9 months continuous), had just gotten a second mediport, was in a power or reclining wheelchair, even at home, had a brand new diagnosis (Lyme Disease), and my little loves (2 and 6 year olds) that needed me, one of which had a Lyme/Bartonella diagnosis as well.  

I moved out and experienced a brief but triumphant remission in late 2014/early 2015, when I just decided that I was going to get well. I had no clue how I'd care for my kids, cook, clean, let alone even get out of bed. On faith and a gut feeling, I left all illness support groups on Facebook, shut down my former nonprofit, Dysautonomia SOS, and stopped blogging about illness. I cut dairy and processed sugar out of my diet (had already been gluten free because of gastroparesis for a decade), and was getting increased daily IV saline infusions through a new mediport.

I moved into my new one level, manageable small and wonderful home, and did not look back. I did not use a wheelchair inside, if I had to crawl, I crawled. I had chairs all over, including the kitchen. I was blessed to have a home health aid a few times a week to prep food, clean, and do laundry, as I could not. But this enabled me to cook seated, and during my rotating schedule with my ex caring for my kids 3-4 days a week, I started to heal. I was blessed with a ton of "starting over" gifts by my family, friends and the amazing people I'd met in person and online through my nonprofit work and support groups. My parents got my kids to and from the bus stop, and my two elderly Yorkies had a lovely backyard to play in, as I could not walk them.

From August 2014 - January 2015, I reconditioned. I lost 80 pounds. I started walking, I cooked, I continued to run my Etsy shop that I had started from bed from my new garage studio, and made fun crafty stuff and sold craft supplies. I became confident, and slowly started venturing out with friends. I used my wheelchair for outings, but could walk up the stairs to my parents house! Lots of little victories became bigger victories, and soon I went on my first outing alone. I was a single mom without many in person friends, feeling better, and was ready to meet new people.

So I went. I started living! I kept reconditioning and building my confidence, and by spring of 2015, I was driving, taking care of my kids, attending their events, shopping, eating out, drinking in moderation, dating, and enjoying a new found social life when my kids were with their Dad. I stopped seeing most doctors, and just enjoyed life! I met my forever husband! It was wonderful! BUT - I was reliant on IV fluids daily through that mediport, and had a very restricted diet.

At a Pirate Festival with my kids - walking for hours! June 2015, So fun!
In Sept of that year, I had surgery to replace the mediport after my skin broke down around the site. I was negligently given medicine I was allergic to, and it landed me back in a wheelchair. I can't go into much detail because we actually settled out of court. Needless to say, it was extremely traumatic, and I was devastated. I was not quite as bad as before, but I had an onslaught of symptoms that waxed and waned over the next few years, always needed the wheelchair when out, and was just so over it all! I'd had my taste of freedom from illness, and then to cope with being so sick again was really tough.

The one amazing thing (beside my kids and the support of my family and friends) that happened during that time was that I met my loving, kind, funny, wonderful husband - and we continue to journey together today. He has been my rock, and when I went from healthy and functioning to very sick and needing care, he didn't flinch. I was devastated to get married with a wheelchair around, but I was able to get up and have our first dance for a minute or so before needing to rest. We had a great night and I was up and moving for a good portion of it, and best of all, I married the most amazing man!

We had a magically geeky wedding! Very blessed to have our happy little family!
In 2016, not only did we get married - I attempted to push past my illness and open a creative studio. It was a very brief magical time, my husband and I and a team renovated a space and I was there in my wheelchair, determined to push through, overworked and in denial about my health. It ended up closing just two months later after I had to take emergency sole custody of my kids and have had them full time every since. The pressure and stress and exhaustion from that transition was not sustainable with my health and a new brick and mortar business, and I became even more sick and we had to close. Again, it was heartbreaking and traumatic at the time, but now, I'm so grateful for the way things played out! I had to break the illness cycle and couldn't have done that otherwise.

My old studio!

2017 was one of the hardest years I've ever faced, I think in part because I was just so tired of the rollercoaster. I wanted off. I didn't know how to get well. I was terrified of Lyme treatment because I reacted to all the meds and supplements, I was running 1500 mls of saline a day through a mediport just to be able to get to the bathroom myself, and I still needed the help of an aid to prep food, do laundry, and she did all the cleaning. I was totally reliant on others, again. My husband had to come home to be a full time caregiver at this point. It was devastating.

(I promise, this all has a happy ending/new beginning!)

In March of that year, my mediport was red, swollen, and I felt flu-ish and had a low fever. After 4 trips to the ER, positive cultures, and still being sent home multiple times because I didn't "seem sick enough" I was finally admitted and tested positive on 4 out of 4 cultures as having sepsis. It was quite the fiasco, and an exhausting and scary week, that led to another week+ of inpatient time, a port removed where the meds didn't work and I felt the whole thing being carved out of my chest, and then a few days later a new port placed, where luckily I was put under and didn't feel a thing. Heavy IV antibiotics and reactions were no fun. I went home, only to end up right back a few days later with what turned out to be a massive DVT (clot) on the new port blocking my one remaining jugular.

Again, it was an exhaustive fight for care, as now both jugulars were blocked, my face was swollen with fluid, and I was fainting from just sitting up, and the pressure in my head was unbearable. I ended up another 10 or so days inpatient for that, then was flat on my back for months until enough clot had resolved and blood flow resumed a bit from my head. It sucked. I was using my wheelchair in my home if out of bed (rarely), and had to be held up on the toilet because I was blacking out so much. I was desperate and hopeless. At one point I needed a mediport study, and my heart went into V-tach and a crash cart was called, and I was alone in the ER, thinking I was dying. So much trauma and fear, it's hard to put into words.

Flat on my back for months. My doggies didn't mind, at least :) Glad they like sleeping as much as I did!
I was mid May when a friend told me about a program called DNRS (the Dynamic Neural Retraining System), which taught neuroplasticity and how to get "unstuck" from being in constant fight or flight, which eventually causes inflammation, immune issues, autonomic issues, pain, and all kinds of things. I started reading about how our brains can become stuck in a loop, and we can do exercises to "unstick" them, the same way people heal after having a stroke. So on faith and a credit card, I ordered the DVD set, and started reading some of their recommended books. The scientist in me was skeptical but cautiously optimistic, because the more I read, the more it resonated with me, and the more the science made sense. So I dove in.

I completed the DVDs and started following the program and within days saw improvements. I was up more, feeling mentally better, and for the first time in a while....I had HOPE. I will be forever grateful to DNRS for that, and opening the door to neuroplasticity for me. After a few weeks, I was walking again, and getting out in my wheelchair. The noise and sensory sensitivity was gone! I rode in the car again without pain and dizziness! That was huge! I was out in my garden, and even helped build a table with my husband. I added back in a few foods!  Things were going really well, and I kept reading and learning from all the pioneers in neuroplasticity, convinced that this was my way out.

Gardening! With a backpack and IV fluids pump, but still! Felt good.

Well, unfortunately, in July I somehow ended up with another blood stream infection. Again, my immune system was confusing the doctors - I had no fever but felt sick, and the port was swollen and red. This time we went to a university hospital a few hours away, and we were sent home! UGH! The same frustrating merry go round ensued, but eventually we got the call that the cultures were positive, and to come back to be admitted. So, my angel of a Dad drove with me the two hours and it was off to the races.

This time it was a gram negative bacteria and required different antibiotics, all of which I ended up having anaphylactic reactions to. They pulled out my port and put in a PICC line, because I wasn't a candidate for ports anymore with all the clots in my chest and both jugulars. I spent another week inpatient, and bless my Dad for staying with me, because I was scared. I'd had so many reactions, so many meds, so many steroids, and was having more heart arrhythmia's, more crash carts, my blood work was wacky, the doctors didn't know what to do, and I was just over it and wanted to go home.
Visiting when I was back in the hospital, losing our minds! I was hours away this time, it was tough. I missed my family.
So I convinced them to let me go home. But, at home, the med reactions got worse, and finally after breaking out in hives with a more intense and scary anaphylactic event - I called it a day with the antibiotics. I went to the ER and got more steroids, more IV Benadryl, and we just prayed that the 7 days were enough to knock out that infection because no one knew what to do, and I was at my wits end.

(I pinky swear promise, we're almost to the good stuff! Stick with me!)

When all of this was happening, I had to stop DNRS and their system of brain training. The exercises were making me much worse, and after the course of steroids to treat the reactions, I had what was later called steroid psychosis, which was a very detached kind of depression I'd never experienced before. It scared the hell out of me. My brain chemistry felt "off" and I spoke with a DNRS coach, and didn't find any help and just couldn't do the bootcamp style program at all.

THEN (yes, there's more), someone suggested we get our home tested for mold, that maybe that was why my immune system was so poor, and come to think of it, maybe that was why my son had strep 9 times that year, along with mono. Maybe that was why my daughter had chest pain at night and everyone just seemed to feel crappy. So we did. Low and behold, in late October, mold testing by a Shoemaker (mold literate) friendly company found toxic mold growing in both kids rooms - the result of water damage in 2015 that wasn't properly remediated. We had no idea. It was hiding behind furniture along my son's wall, and was under the carpet and along baseboards in a few other places in the kids rooms. I was horrified, because who knew how long that had been there, and now to add mold to that long list of health crap? UGH. My poor kids. Mom guilt ensued.

So, we had to leave. We ended up moving 8 times in 2 months, and spent a lot of time in oceanfront hotels and bouncing around rental homes down at the beach near us. I won't bore you with how one rental home was flooded under the sink and covered in black mold and we had to leave the day after we got there, or how we had to leave another rental home over Thanksgiving and head back to the hotel because it was booked. Round and round we went, living out of a few bins, trying to maintain a schedule, and it was exhausting with two kids and two senior dogs, and we all were hanging on by a thread. We tried to make it fun, called it #moldcation and told the kids it was an adventure, and we had some really great views along the way. But it was tough. I was sick. We were all so very tired.

Nice view.

My kids came down with strep and croup while we were crammed in to a tiny hotel (which was really a nice hotel, thankfully, but 4 of us sleeping in one room for 16 days with sick kids was a bit cramped)! I needed 3 PICC line replacements within 2 weeks at one point, lots of ER trips, and was not leaving whatever room we were staying in much. The depression got worse, no matter what I tried. We just kept moving and going, doing the best we could.

Really nice view! Still would have rather been home.
At some point, I started looking back in to other neuroplasticity programs. Something, anything to feel better - I really felt it was the key, I just didn't know how to use it with my brain feeling like depressed mush. So, after reading up in a Facebook Group for brain retraining, I ordered The Gupta Programme, and immediately it clicked with me, and in mid November I started his meditations and support techniques. I was too scared to do actual brain retraining exercises after the swings with DNRS, and really felt I just needed a way to calm myself and cope with scary new symptoms like SVT (heart stuff). Through our moving and chaos, I watched his DVDs and started meditating and learning mindfulness bit by bit. I started to feel more calm and able to cope within a few weeks, and that spark of hope came back. It's very different from DNRS, very laid back, and I really liked his funny and calming demeanor. My head started feeling clearer again. 

Tired, but togther, after one of the many moves.
We finally went home 4 days before Christmas. Our home had been remediated and emptied, and just a few pieces of furniture were there. We all had new beds, so that was good! My kids rooms were a loss, but something in me felt like we shouldn't throw everything away. I'd been reading about mold avoidance, and how it made people worse, and then reading stories of hope and recovery using brain retraining. We stuck all the kids toys that were salvageable in my parents garage, along with all our other salvageable stuff, to be cleaned as we could. Actually, it was my husband that had to do all the cleaning - because the mold strain in our home was Penicillin/Aspergillus, and I'd been deathly allergic to penicillin and the entire family of meds since childhood (that family of antibiotics were what were causing all the reactions earlier that year). I was reacting to all kinds of stuff from our house, but I knew in my gut at some point I could fix it like others had. 

So - we were home! We had a lovely Christmas, and I started brain retraining exercises and continued meditating and using the other supportive tools the Gupta Program provides. On January 11th, I committed to 6 months of daily retraining, joined an accountability group, and got to "work". By Feb 1st, I still hadn't seen many gains (but did feel better mentally!), so I added in another program I'd been researching called FasterEFT. I knew I needed to address the 16 years of medical trauma, divorce, ups and down, and the grief and loss I felt. I started working with an amazing FasterEFT practitioner in combination with taking certification classes, and still doing brain retraining and Gupta style meditation/mindfulness, and the rest is history!    

By Feb 21st, after 6 intense sessions, I woke up and did not feel sick anymore. I don't know how else to describe it. But I haven't been sick since! Sure, I have had major reconditioning to do, and anxiety and fear to deal with, and my body needed to heal. There have been swings. But I am healthy now, and out living, and it's only the end of May! My PICC line was removed April 10th, and I've had NO fluids since! After 7 years of daily fluids, that pretty damn exciting! I've been living life again after all these years, and feel so very blessed. It's been a whirlwind of amazing, and I hope you'll head over to my new blog to learn more, be inspired, and join me in healing!  

I'll leave you with a reading assignment, here's another great book about the power of neuroplasticity by a leading author in the field: 

Thanks for reading! I sat down to write an abbreviated version, and this all came pouring out - so I'm leaving it! Hopefully it brings someone hope. YOU CAN DO THIS! Head to SWING Healing for more! 

Peace and love,

*this post contains affiliate links at no cost to you, with products and services that I love and have tried or read myself. I have no official affiliation with DNRS or Gupta, I was a paying "customer" and the reviews are my own opinions.

Wednesday, May 28, 2014

Find Your POTS cause: Lyme Literature Round Up

As I posted earlier, after 11 years of being sick, 3+ of those REALLY sick, like non functional I-can't-take-care-of-my-kids-or-leave-the-house-and-am-in-a-wheelchair-and-bed-sick, I finally found out I have Lyme disease AND the lovely Bartonella (and probably as few others I'm being tested for). I finally started reading about Lyme, and reading the journal articles and history of this battle. It is summed up (the history of the battle/controversy/disease process) incredibly well in the book, which you should seriously consider reading.

The author was a science writer and highly skeptical of "chronic Lyme" and presents both sides, in what I found to be a very balanced and well researched way:

Cure Unknown (Revised Edition): Inside the Lyme Epidemic.

I am a Pinterest Junky. Unfortunately, journal articles on Pubmed don't work with Pinterst. So I am linking to a bunch of info here on Lyme Disease, and including some pictures purely for pinning purposes. I HATE the site of bug/ticks/etc... so these will be silly pictures! After, you can read me conjecture about how this relates to POTS/chronic illness if you like.

I'm going to do this backwards. Here are the sources for what I will write:

3. TickNET: A survey of testing practices for Lyme disease by large commercial laboratories –United States, 2008. Presented at the 13th International Conference on Lyme Borreliosis and other Tick-Borne Diseases, Boston, MA, August 19, 2013. Available: http://www.poughkeepsiejournal.com/assets/pdf/BK211782914.pdf.

4. Liegner K (2012) Valley views: Major initiative needed to fight tick-borne infections. Poughkeepsie Journal, August 21, 2012. Available: http://www.poughkeepsiejournal.com/article/20120822/OPINION04/308220005/Valley-Views-Major-initiative-needed-fight-tick-borne-infections.

5. Evaluation of in-vitro antibiotic susceptibility of different morphological forms of Borrelia burgdorferi, Infect Drug Resist. 2011; 4: 97–113.Published online 2011 May 3. Eva Sapi,1 et al

Pin-able picture break! 

6. Study Suggests Lyme Disease May Be Transmitted Sexually, The Journal of Investigative Medicine 2014;62:280-281

7. Issues in the Diagnosis and Treatment of Lyme Disease, Open Neurol J. 2012; 6: 140–145. 

8. Lyme disease diagnosis and treatment: lessons from the AIDS epidemic. Minerva Med. 2010 Dec;101(6):419-25.

9. Postural orthostatic tachycardia syndrome following Lyme disease. Cardiol J. 2011;18(1):63-6.

10.Complex regional pain syndrome and lyme borreliosis: two different diseases? Infection. 2002

Another random picture break! Take that Pinterest!

11. Severe orthostatic hypotension in a diabetic patient may not be due to diabetic autonomic neuropathy. Clin Med. 2011 Jun;11(3):290-1. (LYME FOUND)

12. Review of evidence for immune evasion and persistent infection in Lyme disease. Int J Gen Med. 2013; 6: 291–306.**** Excellent

13. Borrelia burgdorferi aggrecanase activity: more evidence for persistent infection in Lyme disease, Front Cell Infect Microbiol. 2013; 3: 40. 

14. Counterpoint: Long-Term Antibiotic Therapy Improves Persistent Symptoms Associated with Lyme Disease, , Clin Infect Dis. 2007 Jul 15;45(2):149-57. Epub 2007 Jun 5

15. Borrelia burgdorferi, Host-Derived Proteases, and the Blood-Brain Barrier Infect. Immun. vol. 73 no. 2 1014-1022 

I think 15 is enough for now. I chose those because they are solid articles/links and also link out to even more sources if needed.

Some other Lyme resources/thoughts in case you are tossing around the idea that your mystery POTS/chronic illness could be caused by Lyme, or may be worse because of Lyme:

1. In my not-so-humble and un-expert opinion, if you have been bitten by a tick or had a mystery rash without a tick (but please remember,only an estimated 30-50% of Lyme folks ever had a rash, you CAN STILL HAVE LYME WITH NO BULLS EYE RASH), and have any kind of chronic illness, get tested just to rule it out. This is a no brainer to me! Especially since it is treatable. I DON NOT think everyone has Lyme. I have, however, read the science behind it now, and am no expert, but this is a big DUH to me if you have no clear etiology to your illness. The testing is not expensive and it's one more thing to cross off the list.

By the way - I have no clue why blogger will not let me un-italicize my writing at this point. I officially give up - the rest of this post will be in italics.

The list of diseases and conditions cause by Lyme is huge, and here is a snippet based on published journal articles/reviews:

-MS (recent Mayo estimates are 30-% of all MS patients have Lyme, there is an interesting ongoing study of spinal fluid of MS patients currently)
-Lupus and almost all autoimmune conditions, since auto-antiboodies can be produced as a result of Lyme, mimicking many things
-other secondary dysautonomias
-Mitochondrial Disease
-Mast Cell Diseases
-Endocrine diseases (Additions, Cushings, etc..)
-the list goes on.........! Lyme is called "the great imitator" for good reason.

Pinnable random picture: Unicorn rainbow IV fluids (thanks Dedee!):

2. Where to get tested:

~Igenex is said to have the best Western Blot, in terms of sensitivity. They are licenced and accredited and have all the other legit qualifications, even in the tough states such as NY and CA: http://www.igenex.com/Website/
~I have been told Stoney Brook has a good Western Blot as well, and is better received by skeptical doctors: http://medicine.stonybrookmedicine.edu/pathology/tick
~You can now get an actual culture done through Advanced Laboratories, though met with resistance from the CDC, even though the possible contamination issues have been debunked by scientists (I'll provide more info on that later): http://www.advanced-lab.com/

Part 2 of this will have snarky commentary and a review of these articles and an explanation in my unqualified terms about the current state of Lyme/Co-Infections. 

Happy reading/Pinning!  

Sunday, January 19, 2014

Found My POTS Cause. Probably. But Finally.

This is going to be a long one, just warning you. It only took 11 years, but we have finally found what is most likely causing my POTS. *highkick!*

I have not written on here in a LOOOOONG time. Like really written. I just haven't had it in me. Most of you that have read through this blog know that my goal was to make sense of this POTS and dysautonomia junk, and encourage folks to find their cause - because 90% of POTS is secondary, and frankly, most doctors just brush it off as no big deal. There are only band-aide medications, you can't really get well unless the cause is found if you happen to fairly debilitated by it. And even then there is no guarantee - but SOMETHING is causing your POTS, and if it's someting serious, YOU NEED TO KNOW.

What's ironic about this timing is that after having a port removed the day before Thanksgiving
because it had gone horribly, terribly wrong (clots, nerve damage, clogged, blah blah blah, etc...), I decided to take a break. I rescheduled all my appointments well into 2014 to take a few months off, because I AM TIRED OF THIS CRAP. 2012 and 2013 were spent on a wild goose chase after an admission where the inpatient physical therapy program actually discharged me, citing that I obviously had an underlying medical condition that needed addressed, and they were alarmed at my blood work.

Monday, September 30, 2013

Dysautonomia Awareness Month 2013

In case you hadn't heard - it's unofficially Dysautonomia Awareness Month in October - which is this week! Here are a few links and graphics from Dysautonomia SOS you can share to spread the word:

Sized for Facebook and Instagram.

General flier.

Sized to be a profile pic on Facebook.

I love all my POTSies :)

Humor is the best weapon sometimes!

See? Humor. Win.

This is sized to be a Facebook header.
Happy October!!!! Let's spread the word homies!

Wednesday, September 11, 2013


First trip out in the new power chair.
I wrote this a little over a year ago and nothing has changed in my opinion of ditching the term "invisible illness". When I see your pictures - I see you are ill. If you are trying to "pretend" to look normal, you can't expect anyone to know you are sick, and that is fine. BUT- it's time to put the shame aside, start talking more, and educate people about what's wrong. Ditch the stigma. It starts with us. If we cling to this term, it continues to keep those illnesses invisible. And if you need to hide your illness (for work, kids, etc...) don't expect people will magically know you are sick. You can read more about my thoughts on this below.

Tuesday, April 16, 2013

Taking a break...

Peace out homies (for a bit)
As you may have noticed, have not been posting here much. This has never been a narative blog, I've tried to keep it science based. That takes a lot of work, and for now, my limited energy and time spent of that type of writing will be devoted to Dysautonomia SOS.

Dysautonomia SOS is a nonprofit, with a board of directors, medical advosors, the works! I feel like I can affect more change via that platform at this point. My health has been declining unfortunately, with no treatment successes beyond IV fluids, so I have to pick and choose where my spoons go.

I'm going to leave STOP POTS up as a resource, BUT WILL NOT ANSWERING EMAIL. If you need support, please head to the Dysautonomia SOS page and contact via that website, or look through the many resources there. Much of what is on this blog (especially the "Find your POTS Cause stuff) is being formally rewritten for the nonprofit and will be up in the coming months.

Thank you for understanding! I hope this page continues to be of help to others!

Friday, January 18, 2013

Anniversaries, POTS Perspectives, Suggestions and Such

I have not written a post in a long time, since we have been furiously working on the Dysautonomia SOS website.  I also have been doing a few "normal" things and living life a bit.

BUT! Last month marks two big health anniversaries for me - it has now been 10 years since my first POTS episode in the Florida Keys, and 2 years since I became completely disabled by it. At least they both happened in the same month, right? So I can think about both, reflect, yadda yadda yadda, and move on. Having to do this twice would have been annoying.

So ten years. Did I think this would be going on for a decade? NOPE. But it has.

Unless you are super lucky and see an amazing doctor when you first get sick with this, like the one's on our Advisory Committee, when diagnosed, patients usually hear one of three things:

"Oh, POTS is no big deal, you'll grow out of it"


"I have no clue how to treat this, NEXT"


"It's just anxiety, take some Zoloft"

I have heard all of these. The only one that has been true is the second. I actually appreciate when a physician admits they don't know what to do with me, instead of making something up. Up until I was super-dooper sick two years ago, I heard all three regularly. It took me almost dying and being in the hospital for 9 months to be taken seriously.

And now, 2 years have passed. So what has changed? Well - since being released from the prison, I mean hospital - I definitely have improved. But not because of any new drugs. And not quickly. The things that jump started me getting up and moving a bit have been three fold:

Monday, December 3, 2012

Tuesday, November 27, 2012

Find Others! Join The Dysautonomia Social Media Directory!

Let’s connect online! Add yourself to our interactive map and find others online and in your area. You can upload pictures, online contact info, blogs, websites, and more!

***Under “Additions” menu, click on either the simple or detailed add form. You can select to be added as a patient, spouse, parent, or family/friend.

Friday, November 23, 2012

POTS in the news!

Recently, there was a two part series about POTS that was very well written, and included the stories of the son of one of Dysautonomia SOS's volunteer's, and myself!

Here is a link to Part 1, which includes great info about POTS, and the story of John, a teen battling POTS with an amazing attitude:

Is it depression, anxiety or POTS? The first article of a two-part series

John Point
by Sue Ann Rybak
John Point, of Chestnut Hill, was a typical kid who loved hanging out with his friends on the basketball court.
But in the Summer of 2009 he started to have flu-like symptoms: aches, fatigue, headaches.
“John was on the cusp of turning 13 and had really started to grow a bunch,” Janet Point, his mother said.
At first his parents and the doctors thought he had mononucleosis. But after a battery of tests, including CAT scans, an electrocardiogram (EKG) and allergy tests, and a heavy dose of antibiotics, the doctors could find nothing wrong with him.
“Somewhere around the third or fourth test for mono, the doctor said, ‘Well maybe he’s just making this up,’” Janet said. “I thought, ‘I don’t think he has invented this.’”
“You just couldn’t get John out of bed in the morning using proper or improper motivational techniques,” said Steve Point, his father. “Yelling at him and dragging him out of bed didn’t work. But, he didn’t seem like he was so sick that he couldn’t get out of bed.”
Finally, desperate to find an answer, John’s Dad sent out emails to members of the Chestnut Hill Sports Club.
“There is a giant email address list that goes around and there are a number of physicians on the list,” Steve said. “So, I thought maybe someone can recommend a doctor at CHOP. (Children’s Hospital of Philadelphia), who specializes in weird diseases.”
Steve said someone recommended Dr. Mark Magnusson at CHOP, and he performed a “tilt-table test,” which is one of the techniques for detecting POTS (postural orthostatic tachycardia syndrome). During a tilt table test, a patient lies on a table that moves from a horizontal to a vertical position. Measurements of heart rate and blood pressure are taken while lying flat and then again at intervals while tilted upright. The optimal duration of tilt testing in patients suspected of having POTS is 40 minutes or until they faint, at which point the test is concluded.
It was February 2010 when Magnusson diagnosed John with POTS.
According to the National Institute of Neurological Disorders and Stroke, POTS is a condition in which an excessively reduced volume of blood returns to the heart after an individual stands up from a lying down position. The primary symptom is lightheadedness or fainting accompanied by a rapid increase in heartbeat of more than 30 beats a minute, or a heart rate that exceeds 120 beats a minute, within 10 minutes of rising.

Here is Part 2 (featuring me!): 

POTS victim has hope despite limited activity

Claire Martin with her baby girl, Gabriella.
by Sue Ann Ryback
(The second of two articles)
Claire Martin, 34, founder of Dysautonomia SOS: Searching Out Solutions, knows first-hand the obstacles and challenges of living with POTS (postural orthostatic tachycardia syndrome).
The mother of two young children, Lukas, 4, and Gabriella, 14-months, Martin had her first POTS episode at 24 while studying marine biology in graduate school.
“I was setting up an underwater research site in the Keys,” Martin wrote in an email during her twelfth day in the hospital on Wednesday, Oct. 24, “when out of nowhere, I had an extreme bout of tachycardia and felt like I was going to faint for the first time.”
Martin’s primary symptoms at first were bouts of tachycardia, lightheadedness, and fainting.
In 2003, Martin was forced to drop out of graduate school because her symptoms increased in severity and frequency.
Martin, who was studying sponge ecology and growth rate studies in the Keys said, “I was having trouble functioning, and I definitely couldn’t scuba dive anymore to continue my research.”
Martin, who now lives in Virginia Beach, Va., said she was a very active child, teenager and young adult. While she doesn’t know the exact cause of her POTS, she suspects it could have been the result of a spinal fusion in 1999. But, she didn’t develop POTS symptoms until years later.

We are very thankful to see POTS in the news, and especially for a reporter who takes the time to convey accurate information. While I don't see myself as a victim, more of a butt-kicker (so to speak), I am so grateful to have been featured in this!

I encourage you all to reach out to local newspapers! Dysautonomia SOS has a press guide that can help you have your loved one (or yourself) featured locally, and spread the word about POTS and Dysautonomia. This is a great tool for upcoming events, and to make this condition a household name. Contact us if you'd like help!

I'll be back writing more soon, we are in the final stages of editing the new website, which has been taking all of my energy. Love to you all!