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.

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"

~or~

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

~or~

"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:

Join the Social Media Dysautonomia Directory!

Hey folks!  Wondering where all those people are online that have dysautonomia? It can feel pretty lonely having a weird condition that no one has heard of, but supposedly a bunch of people actually have! We just have to find each other!

We created a directory you can register for, and include your various social media contact names and handles. You can include as much or as little as you like. We are dividing it up based on location. There will be a page in the new website devoted to this directory.

One of the goals of Dysautonomia SOS (and this blog) is to connect people, so they can share local resources and support. The online community can be a great resource for finding others.

To register, you can click THIS LINK, or fill out the form below:

Subscribe to our Social Media Dysautonomia Directory:

Welcome to the Social Media Dysautonomia Directory! Provide as much or as little info as you like, and find others online that deal with dysautonomia. We will not send emails or contact you with the info provided, this directory serves as a way to connect with people and find support online. As always, be careful to only list info you are comfortable having displayed publicly, and we are not responsible for any interaction on social media taking place. You can remove yourself from the directory anytime.

YOUR EMAIL ADDRESS WILL NOT BE DISPLAYED ON OUR WEBSITE.

* indicates required

Email Address *

Online Name *

City, State, Country

Website/Blog

Facebook Page/Profile

Twitter @ Name

Instagram Name

Tumblr Name

Other Social Media:

Diagnosis

_______________________________________________________

The Dysautonomia SOS website will be up and running in the next week! Blog posts will resume after that, I have been spending all my time/energy on the nonprofit website, but STOP POTS will remain active and full of the opinions I can't share on an official organization website. 

Oh, and the TWEET-A-THON is next weekend! DINET is on board as well, we are very excited to get #dysautonomia trending on Twitter! Here is a flier you can share where ever you want:

  

Love to you all, and thank you for the continued support!

Claire

October Is Global Dysautonomia Awareness Month!

And of course we now have tee shirts!  In men, women, and kids styles:

Non-Profit Organization Update: How To Get Involved

I have mentioned on this blog before that I am co-founding a new Non- Profit.  Some things have changed that I wanted to disclose and update you all on.

HISTORY OF THIS PROJECT:
Back in November or so, I had started putting together thoughts and ideas for a new Non-Profit Organization (NPO) that would help improve the situation across Virginia, the DC area, and MD.  I had big ideas about how to help people avoid what I have gone though for the last 10 years, but knew I could not do it alone, especially from a bed on a laptop.  Part of my vision was uniting all the bloggers and organizations into one happy Dysautonomia awareness family, because everything seems very disjointed and fractured.  Well, Team Fight POTS was birthed out of that, and it has been great to work with other bloggers and activists, and hopefully we have helped people along the way.  Unfortunately, after reaching out to a few non-profits, not many actual organizations are willing to work together it turns out.  Bloggers and frustrated patients, yes - organizations, no.  So I decided I would start my own.


I began with this blog, and Team Fight POTS came shortly after, and in the process met a few folks with the same idea.  Originally we tried to work with an existing NPO, but eventually decided to work together on a completely new NPO, Dysautonomia International, which I have mentioned on here before.   

Unfortunately, after lots of hard work and many hours, I resigned and am no longer working with the group Dysautonomia International for a variety of reasons. We have some irresolvable differing issues and ideas about how to best achieve our goals, and I actually am going back to focusing on VA, DC, and MD.  The situation here for dysautonomia patients is BAD, and there is a massive lack of resources and public knowledge.  That needs to change.  That can not be done with a blog alone.

We already have an amazing group of people to get things started (or continued, actually), and we are filing paperwork and finalizing our web content and team.  More details will follow as they evolve.  My goal has always been to educate educate educate - and empower patients to improve their lives.  


So the new non-profit will be called.....drum roll please........

Dysautonomia SOS: Searching Out Solutions 

The NPO will focus on improving local resources, but will also provide (many free) materials for anyone anywhere with dysautonomia.  Our focus will be on the Orthostatic Intolerance disorders: POTS, NMS/NMH, OI, and OH.  We will provide basic info on the others.  We have BIG PLANS for our region, and helping patients get the treatment they deserve, access to the resources they need, increasing awareness, and raising funds for research.   AND FINDING YOUR POTS CAUSE! We hope to work in conjunction with a nationally focused NPO, and we'll see what happens, and few things are in the works.

We have a great group of volunteers and medical advisers, but are looking for more help.  We are 100% volunteer run, and applying for 501(c)(3) tax exempt status.  We are laying out clear cut ideas and goals so that everyone that volunteers knows where we stand and what we want to achieve.  They include (but are in no way limited to):

• Focusing on POTS, Syncopal disorders (NMS/NMH, OI, OH), Autonomic Neuropathy, and finding the underlying causes of these disorders.   Providing information of the other forms of dysautonomia and links to resources,
• Empowering and educating patients, caregivers, medical professionals, and the public by providing credible, medically reviewed educational materials and solutions for everyday life, available for FREE to everyone online,

• Providing free brochures and access to these materials in doctor’s offices, hospitals, schools, and other applicable public places across the VA/DC/MD region (you will be able to order these materials to print and distribute in your own region outside VA/DC/MD as well), thus increasing public awareness, decreasing diagnosis time, and improving treatment options for dysautonomia patients,

• Funding research, fellowships, new autonomic equipment, and projects that directly impact and improve the lives of patients in VA/DC/MD, &

• Working together with the medical community , other organizations, and public to provide support and improve the quality of the lives of dysautonomia patients in our region and around the world.

If you are interested in volunteering, even a small amount of time - please email me for a list of positions and needs we have right now, or if you want to receive updates and info on volunteering as it becomes available.  And you don't have to be in VA/DC/MD or know about Dysauutonmia to get involved!   I still hope to work with the other organizations out there, I really feel like we are such a large patient population, and we need to unite to get things done, especially regarding awareness and research.

This may be wishful thinking, but who knows?

If you would like to apply to be on our Medical Advisory Committee or Board, please email Claire at dysautonomiaSOS@gmail.com.  Volunteers do not need to be located in VA/DC/MD, as we will be providing services that aim to help and are available to EVERYONE.  

Thanks!
Claire

Finding Your Cause: The Project (need your help!)

I am on a "Find your POTS cause" crusade, which I think actually applies to Dysautonomia in general as well.  I have a plan for compiling a large printable sourced guide that you (and I!) can hopefully use to try and navigate the diagnosis process and make it a bit easier.


So this will be a multi- part process, and I need your help!

• Part 1 was explaining the need for this, exploring the definition(s) of POTS, and getting a starting point collection of known causes of POTS together with medical journal sources and citations, and I have received awesome feedback with suggestions for additions to the post: What Is Causing Your POTS? And Why It IS A BIG DEAL: A Printable, Sourced Guide

 

• Part 2 will involve adding the appropriate testing for all the causes listed in part 1, and separating this into a new printable guide.  If you are up to helping on this, please contact me!
  
  
  
  

• Part 3 will involve personal stories of people living with these diseases, causes, and issues related to POTS.  I'd like to feature a brief (or long if you prefer) write up on a persons journey to getting their cause diagnosis.   PLEASE CONTACT ME TO IF YOU'D LIKE YOUR STORY FEATURED!  Stories of success and hope are needed as well! 

   

  Thanks everyone, and much of this will hopefully transition over to the new Non Profit I am founding, Dysautonomia SOS.   More details on that coming soon.  Lots of work going on behind the scenes, very exciting stuff!

  ---Claire

 

Hopeful Dysautonomia Video from Lette!

This is Lette from Irish Dysautonomia....and I LOVE THIS VIDEO!  There is hope for everyone, and some very wise advise in this video, watch the whole thing if you are up for it!





I have had periods of remission as well; and know that food, physical activity, and not becoming depressed by living on the support group boards are all important factors in improving quality of life. Remissions and recovery DO HAPPEN! What has helped me currently in my yucky state of full on POTS/Dysautonomia is trying to help others empower and educate themselves (and myself), and finding BALANCE. Wishing you all a HOPEFUL day! --Claire