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,
---Claire

*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.

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.

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!
---Claire

POST REWIND: Choose to be VISIBLE

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.

It's here! Dysautonomia SOS's Website is FINALLY Here!

YAY! The Dysautonomia SOS site is up and running. 

Here are a few sneak peak pictures. I will be back blogging more actively now, looking forward to it!

Thanks to everyone that helped make this a success! 
--Claire

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!
https://www.zeemaps.com/map?group=460425#

***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.
THANKS!
https://www.zeemaps.com/map?group=460425#

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

Local Life November 13, 2012 4 Comments and 1 Reaction

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.
READ MORE HERE

Here is Part 2 (featuring me!): 

POTS victim has hope despite limited activity

Local Life November 21, 2012 0 Comments and 1 Reaction

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.
READ MORE HERE

_____________________________________________________________
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!
Claire

Choose to be Chronically VISIBLE

Alrighty.  Time for an Op-ed.   It may tick some people off. 

I see much posting going on regarding INVISIBLE ILLNESS and spreading awareness by promoting the idea of an illness being invisible.  This term has always bothered me, as I have mentioned before on this blog.  It has the ring of victim/helplessness to me, and I tend to like things that are assertive, proponents for change, and action oriented.


I think the problem here is two fold:
1.  There is no invisible illness, JUST IGNORANCE.  What illness is truly visible?  There are very few compared to vast majority of illnesses, diseases, and conditions that people suffer in silence and try to hide - or that do not cause them to look deformed or like the traditional notion of "ill."  And that traditional notion of illness is what needs to change. By continuing to use the term invisible illness, we are separating ourselves from other people that "look sick," and in my opinion, making the problem worse. 

2.  People find their identity in the "invisible illness" movement, and use it as something to hide behind.  NOT EVERYONE.  I know that is probably not most people's conscious intention.  Many are looking to find a way to spread awareness, which I commend.  But is this how any of us want to be known?  As invisible?  Is this the best way to spread awareness? 

What society sees are deformities and stereotypes.  Not illness.  They see something out of the ordinary and recognize something is "not right" with that person.  This actually has nothing to do with if they are "ill" in some cases.   Is an amputee ill?  Maybe.  Or maybe they are missing a leg, but otherwise are perfectly healthy, and do triathlons.  This is a problem with society, not with those of us who are chronically ill, and we need to address those stereotypes if anything is going to change.   We need to speak about our conditions by NAMING THEM, and being visible, not promoting an image that quite frankly can be a bit whiny sounding at times.

Stand Up POTSies - You DO look sick!

Spoons = Energy.

So I was discussing the whole "invisible disability" and "but you don't look sick" labels/movements with someone the other day, and it made me think about the whole issue in terms of POTS.  I'm on board with supporting the Spoonie movement, as it explains how us POTSies and Dysautonomia folks have to delegate what to spend energy on, and is a great analogy to send to friends and family about our condition.  But I feel labeling our condition as invisible is not accurate.

Many people with POTS and dysautonomia are young, and do not have apparent or obvious deformities. This does not equal not looking sick, or being invisible.   

Identitiy Crisis: Causes of POTS and Dysautonomia Unknown?

Well, I am once again on the hunt.  But this time is different, and the stakes are higher.  I have had POTS now since the end of 2002, with many ups and downs, but always managed to bounce back, or push through.  I had a few fairly bad spells where I was told I "just have POTS", and was given meds (or not), and basically told to just deal with it.  I was constantly given the run around by local doctors, and got burnt out on the constant scoffing, anxiety blaming, or being passed on to yet another specialist because they didn't want to deal with my issues.  So this is partially my fault - I should have kept pushing, even though the process is hard to maintain while trying to live, and it gets exhausting.

My health had been declining in 2009 and 2010 with the increased stress in my life (business related), and leaving all of these health issues untreated and unchecked for so many years while working in my typical type-A fashion was catching up with me.  Then I got pregnant in December of 2010 with our second child, and I have been mostly bed bound, and completely hospital or home bound, ever since.  I like to call it, "POTS gone wild".  I go everywhere by medical transport.  I cannot tolerate more than one or two minor activities, even if seated with my legs elevated, per day.  I barely can cope with caring for my infant daughter, and am constantly pushing my health boundaries to play with my preschool aged son.  It has been 14 months since I left the house to do anything social, anything other than be hospitalized (for over 9 months total) or go to a doctors appointment.

Why do I mention this?  Because I truly believe that if someone had found the cause of my POTS, and if I had made it more of a priority, even though I was functioning at a moderate level, I would not be in this situation.

So I am now on the hunt for answers, and have been searching the medical literature and any credible resources I can find for ALL the causes of POTS, and I am demanding to be tested for ALL OF THEM.  

And so should you.

"Idiopathic POTS", in my not so humble opinion, is an idiotic notion.  It means that the cause is unknown.  I have had many doctors tell me that some people "just have POTS".  What a load of crap.  Something is causing my heart rate to go up at least 30 beats per minute when standing.  Something is causing me to pass out or have near-syncope events after a few minutes (if I'm lucky).  Something is causing all the terrible effects and symptoms of POTS that we all experience, and that certain SOMETHING may be a serious underlying disease or health condition.

The problem in diagnosing the cause of POTS is that there are only two main centers that contain a sufficient array of specialists across all of the medical fields that encompass the multitude of possible causes of POTS - and that even know anything about POTS.  The Mayo Clinic in Rochester, and Vanderbilt University in Nashville.  That's it.  In all of America.  The Cleveland Clinic is fairly well known too, but most people in the autonomic world say go to Mayo or Vandy.

Thankfully, I have an appointment scheduled in July for Vanderbilt.  It has been scheduled since November.  That is a 9 month wait.  Unacceptable.  The wait for Mayo is even longer, as is the wait to get in to see the famed Dr. Grubb (over a year), who has published loads of articles on POTS.   There are so few actual POTS specialists, and so many POTS patients, that we are all waiting ridiculous amounts of time to be seen.  Locally, all the specialists that could diagnose what is causing my POTS are completely spread out, and many times they don't and won't talk to each other.  And they only specialize in their specific field or study, and may miss something, or pass me off to yet another doctor.  I am trying to find some answers locally in the mean time, to avoid the 12 hour car ride to Vandy, and avoid continuing in this state for another 5 months, but it's not looking good.

Why only two centers?  This baffles me.  It baffles me more so because I have learned how common POTS and Dysautonomia are.  Part of the problem is that most of the public and the medical community does not know anything about POTS or Dysautonomia.  It's a ridiculous notion, when a low estimate is that 500,000-1,000,000 people are living with POTS, and I'm not even sure what the current stats are for Dysautonomia in general.  So POTS by definition is not rare.  It is more common than MS, Parkinson's, and Autism (stats cited in this post).  But you can go to any decent sized city and find multiple doctors that treat all three of those other diseases.

As mentioned previously, POTS can be caused by diseases affecting a number of of the bodies systems.  This makes being a POTS specialist tough.   This is why we usually get passed from doctor to doctor in a variety of specialties. They include (but are not limited to): Cardiologists, Neurologists, Endocrinologists, Rheumatologists, Allergists, Immunologists, Gastroenterologists, Hematologists, Dermatologists, and even Ophthalmologists.    

THIS IS A PROBLEM!

The many bodily systems possibly affected by Dysautonomia and POTS.

POTS has an identity crisis. Is it autoimmune?  Is is post viral?  Is it EDS?  Is it a problem with your aldosterone?  Maybe, maybe, maybe, and maybe.  All of those possibilities (and there are many, many more), would require the specialized knowledge of at least three different doctors.  And therein lies the problem. 

So my idea, for a long time, has been to compile all the possible causes of POTS, checklist style, with a diagnostic guide for patients (and maybe doctors) to use to find answers.  I am a firm believer that before saying the cause of your POTS is unknown - or "idiopathic" - you, and any responsible doctor, must exhaust all options.   However unlikely based on your presenting symptoms, the fact that you have POTS means you should be tested for all the known causes, until one comes back positive.  They should be ranked in order of prevalence, and broken down by symptom groupings.  If all of the known scientific causes come back negative, then fine - the science isn't there yet, but my feeling is that most doctors don't even know what this list consists of, except maybe at the two big medical centers I mentioned.

I firmly believe that the key to getting the best treatment is empowering yourself with the most knowledge possible.   This is a BIG project (for me alone at least).  But how many people have died of the underlying disease causing their POTS?  We don't know.  I always hear that POTS is not fatal.  But untreated autoimmune diseases can be, as well as certain forms of mastocystosis. Both cause POTS. We don't know how many people are misdiagnosed, and miss out on years of their lives, when things may have been different with the correct treatment.

I do know that I am not the only one stuck in my house, in a wheelchair, waiting for answers.

So I am starting this list, and this may be a long project, but someone has to start.

If you would like to be involved in this project, and/or a number of others - please contact me.  I am working with NDRF in a large expansion and website revamping of the charity, and we need your help.  We can not continue to live with poor quality of life, stuck indoors, waiting on the few doctors that know about POTS to see and treat us.  We need to educate ourselves, the public, and the medical community about this disabling illness that is not "idiopathic", and we need to find the cause for our own POTS.  We need to team up, as a community, and let the medical professionals know that we are not idiots, we are people, and we are educated, and we want answers and treatment.

---Claire

START A STOP POTS REGIONAL CHAPTER!

Are you looking to start a support group with resources in your area?

If you are serious about spreading the word, raising awareness, and helping compile data on doctors treating POTS in your area - contact me!

I will help you set up your own site, and use the information and content on here (which is copyrighted to STOP POTS) to get started.  I am also in the process of getting STOP POTS official Non-Profit status.

The main goal of having regional chapters is to provide links to local doctors, support materials relevant to your area, and possibly hosting or promoting local awareness events in your region.

We need to spread the word about POTS diagnosis, treatment, and support - and what better way to do that than to work TOGETHER?!?!


Email me (Claire) at stoppotsvirginia@gmail.com for more info and to start chatting about this.

I really believe the more local groups we can get going, the more doctors will have to learn about POTS, and we can reduce the diagnosis times, improve treatment options, and help others suffering from this illness.

Thanks!!!
-Claire

Sick Humor: The top ten worst suggestions commonly given to someone with a chronic illness

Sick Humor: The top ten worst suggestions commonly given to someone with a chronic illness
(From butyoudontlooksick.com)

Sometimes you just gotta have a sense of humor!

The top ten worst suggestions commonly given to someone with a chronic illness:

1)Have you tried holistic options? (many. I’ll bring it back up with my doctor on my next visit, thanks.)

2) Could it be your stress? (My opinion is, it is my illness. I’ll bring it up with my doctor though, thanks.)

3) Could it have to do with the altitude? (I’ll bring it up with my doctor…thanks.)

4) I read in {insert any generic magazine here} about a new medication. Have you heard about it? (I was on it when it came out 17 years ago. but I’ll bring it up with my doctor. thank you.)

5) Have you thought about being in a trial study? (I’ll ask my doctor. thanks?)

6) WOW. If I were you, I don’t know what I would do. I might just kill myself. (Thanks?)

7) Have they found what is causing the problem? (no. my doctor is an idiot. I’ll remind him, thanks!)
Have you tried hypnosis? (I’m still sick, but when the phone rings I bark like a dog.)

9) Have you googled your illness? (….no! thanks!)

10 Have you ever thought you were getting sick because you haven’t wrapped your house in aluminum foil because, you know, the aliens have been bugging our houses for the past 30 years and in some cases, making people really sick. I read on…..gee I lost the web site. but it’s true! I heard it from Sally’s cousin’s sister-in- law. And then every time you use deodorant you would think you would be warding off these bugging rays, but it still makes it worse, so you are not being pro-active to your health by wearing that deodorant. I can’t believe you! If you wanted to get better you would stop wearing deodorant..(voice gets fainter and fainter the further you just walk away.) THANKS!!!!!!!!!!

Article written by Amy-Beth Maran , © 2007 butyoudontlooksick.com

36 Easy things that you can do to make the life of your chronically ill friend a bit better.

This may seem kind of self serving, but I thought it may help others to (subtly) pass on to family/friends. Everyone knows someone who is sick in some form or another - these are great tips from www.butyoudontlooksick.com!

36 Easy things that you can do to make the life of your chronically ill friend a bit better.

36 Easy things that you can do to make the life of your chronically ill friend a bit better.

You do not need to spend a lot of money. You can be thoughtful in so many ways. The point is to do something, and do something today. I have listed below 36 easy ideas that anyone would appreciate. Sometimes it is hard for a patient to ask for help. Just do it! The hardest thing about chronic disease is that it is chronic. I had a friend who had a really bad flu and she received flowers that very week. With me – since I am sick all the time… I get nothing. Am I any less sick, sad, frustrated, lonely, or bored. NO, I need your love and support now more than ever. When everyone else forgets that I am still in this struggle with my illness….. please remember. It didn’t go away, I didn’t forget. I need you to be my friend.

The Spoon Theory written by Christine Miserandino

If you are struggling with family and friends understanding your illness and why you can't party like a rock star, or much less do many "normal" tasks, send them this! And join the #spoonie team on Twitter, a phrase resulting from this article.

The Spoon Theory written by Christine Miserandino