Connie's FULL recovery story from CFS & CIRS - and why grit is overrated

Connie was the person who inspired me that recovery was possible. Connie shares her full recovery story from CFS, CIRS, and mold-illness through brain retraining and explains why grit is overrated. Starts at 0:23. TIMESTAMPS below.
OVERVIEW:
Dr. Connie Boczarksi was a master at pushing through, until her body said no more. Connie had moderate Chronic Fatigue Syndrome and severe Chronic Inflammatory Response Syndrome for 5+ years, though had health issues bubbling under the surface for longer. Her key symptoms included brain fog, debilitating fatigue, crashes, light sensitivity, mold sensitivity, nausea, dizziness, and more.
Connie was the recovery story I watched on the DNRS website that convinced me I could heal by retraining my brain, since our stories had so many overlaps. She shares her authentic experience about brain retraining and answers questions like “do you need to move out of a moldy place to heal?” [Disclaimer: Nothing we share is medical advice. We're just sharing our own stories and observations.]
We talk about the “achiever” culture in brain retraining, and why that isn’t always a good thing. Connie shares brilliant wisdom on how resilience is more important than grit, which I think could be a TED talk.
TIMESTAMPS:
0:23 Intro and full circle moment
1:16 Connie’s purpose for sharing her story
1:47 Connie’s life before she was struck down with CFS and CIRS
3:05 Onset
4:30 Connie describes her former job as a chiropractor
5:13 Connie moves into an even moldier office, and this happens
6:00 Connie describes her most debilitating symptoms; which symptoms had workarounds and which didn’t
7:20 Do I shower or do I eat?
7:43 After her tipping point, how she still tried to go to the gym. The phone call she gets from her doctor on a Sunday, and what the biggest lab in the US said.
10:03 Why her functional doctor said she needed someone else
10:52 Things took a sharp turn - seeing a chronic fatigue MD who tried the kill approach.
11:37 Connie’s big realization about the kill approach.
12:04 How other specialists in the traditional medical system gave her PTSD
12:55 Finally finding a doctor who knew about mold
14:04 What was validating about CIRS doctor, but what was the challenge
15:31 Do people need to get out of the mold? Our reflections, not medical advice.
18:11 Epigentics - and PhotoShop adventures with her friend Mark
18:58 Walking on eggshells
21:07 Rock bottoms
22:30 Why I am mad about medical extremes!
23:49 Diet changes?
24:17 Why she lied to her CIRS doctor about not having MCAS symptoms
26:27 How Connie found the modality that worked for her - and what guy bought it for her
28:18 Reading the book first
29:32 What part of this new modality made sense to her?
30:45 Connie’s experience with the DNRS DVDs (it’s only available online now). Getting back into a familiar pattern. What symptom immediately went away.
32:20 Connie describes ebbs and flows of brain retraining
33:07 What was Connie’s favorite aspect of DNRS - Connie had this real-talk answer!
34:32 Nuance between pushing through and doing the work. Doing the full hour?
37:02 Learning to be gentler on herself. There is a funny quote in here.
38:44 Why how measuring success through symptoms and then through achieving can have drawbacks
40:23 Grit vs resilience
42:23 We reflect on Phil Murray interview who said this.
44:19 Timeline of how long she was sick + how long it took to recover
48:01 Connie’s advice about people who are anxious about being anxious once they realize it’s the nervous system, based on a recent KZbin comment
49:23 What inspired Connie to change her career
50:13 How she's helping people now beyond just brain retraining. And how she's helping friends and family get on board.
53:04 Common misunderstandings people have when doing a brain retraining program
55:46 Connie’s views about the positivity approach in some BR programs
59:34 How do you retrain on mold?
1:01:57 Connie’s life now. While healthy and well she still has to remind herself THIS.
1:02:51 Connie weekend volunteering to hike with rescue dogs
1:03:48 How to find Connie
1:04:12 Connie’s final words of wisdom
1:04:48 Goodbyes - what about Connie’s testimonial helped me keep going
1:06:51 Pictures of rescue dogs Connie took on hikes and now with their forever homes
1:07:23 Outtake
Find Connie at conniebcoaching.com and on Instagram
/ conniebcoaching
Transcript coming soon at healwithliz.com
Other video mentioned in this chat:
Phil Murray’s story: • Phil's ME/CFS recovery...
DNRS recovery stories:
retrainingthebrain.com/catego... (Connie's is on page 2)
Independent Programs Guide:
Lindsay Vine (host of the Post-Viral Podcast) and I (Liz) published a 190 page guide containing an in-depth analysis of 25 Lifestyle & Nervous System Regulation programs. Get your copy here:
healwithliz.com/programs-guide

[@lisabennett1253]

OH MY GOSH!! Thank you for saying that Connie!! I have never looked forward to doing the practice either! I thought it was only me!! That is SO DARN helpful for me!!! Thank you!!!

[@JanaWellbourn-ss1ps]

DNSR is great. I’m 3 weeks in … also a moldy. Thank you Connie for your story. Also thank you Liz

[@lisabennett1253]

This is excellent and I'm not even through it yet! The self-compassion part. The "achieving" part. So much good information that you do not get from DNRS. One of the best interviews on this!

[@HealwithLiz]

Thanks Lisa ❤❤❤!!

[@Mamoo777]

I’m still doing dnrs. It’s been two years. I have gotten a little better so I k ow it works but the visualizations everyday for an hour starts getting on my nerves. I imagine if I was more consistent I would be a lot further along by now. Great interview! Thanks

[@HealwithLiz]

Thanks Dianne! Yes, consistency and doing what feels right (vs an amount that feels pressured)! Also adding your own spice can help!

[@terrance429]

Did you go thru the cirs protocol while you were on the dnrs ??

[@MEF7]

@@terrance429 Good question!

[@spruceysarah]

Loved this interview so much! Such a great point about learning to stay regulated in the presence of stress and negative emotions -- just like we eventually want to eat all the foods and smell all the flowers again, we also want to be able to have all the emotions without symptoms.

[@HealwithLiz]

Thanks so much Sarah, I loved that part too!!🌼🌷

[@gailivey2015]

I have CIRS, and a friend recommended DNRS while I'm going through treatment. I'm a little concerned about spending that kind of money considering what I'm going through with remediating my house. I've always been very good at visualizing. I go to sleep at night writing stories and movies in my head. I used to close my eyes and actually feel like I was riding a horse when I was a horse trainer for a living. So, I think DNRS would really work well for me. I just have to find a way to add that into the expenses I'm going through when I'm not working hardly at all and watching the mold company eat my savings.

[@HealwithLiz]

As Connie described, the remediation contractor bought DNRS for her. When I bought it I was convinced it was the best thing for me and worth the money. I found it a couple months after I moved to an environmentally safe apartment, and had a setback at the smallest thing, and felt back at square 1 physically. I guess I saw it as an investment. If you really love visualizing, go with what you feel and support yourself in that decision. Read the articles on my website (linked in the about section of KZbin) 'Guest post: Not yet ready for brain retraining?' and 'How I Healed My Fight-or-Flight system (a detailed review of DNRS)'.

[@homemakersheart3614]

Thank you Liz for this interview, you do such a great job doing this. I am at 7 mths and have had that focus of 'what did I achieve vs how am I doing this in a more regulated state'. The resilience piece was huge for me, pushing & rushing are such pests aren't they?! Connie, after 7mths of training, and 18 yrs of CFS, I have had no idea of what my "goal" was or what I wanted to "do". So many folks talk about travel, I'm not like that. I love my home and garden, some crafts and friends and church. It was your description that opened my eyes to - my goal can be "to be able to do my day to day activities with ease and grace and out of a choice (sprinkled with self compassion through my day)" rather than I want to see the world! I've never been that person, but all the years of "managing" I have had trouble dreaming up something. Now, with Grace and Connie's story I can see I can LOVE my life and not be afraid to do things in my day to day life. What a shift! Hugs to you both and a warm cup of tea. PS I have to rewatch the last 20 min a few times, there was so much for me in that, I took notes on 3x5 cards of what it brought up for me.

[@HealwithLiz]

Thanks for this beautiful share Dee! I'm so glad you connected with this. I'm sure there are people reading your comment who will relate and be inspired! 🤗 And I really appreciate your kind words, it makes what I do all the more worth it!

[@lynnlasak4089]

Yessss! Restorative yoga has been so helpful during my journey with brain training.

[@HealwithLiz]

Thanks for sharing Lynn 💓💓!

[@skyman5709]

Love your smile Liz!

[@lynnlasak4089]

Thank you, I’m currently doing brain retraining and I’ve had a couple setbacks, that can be bit scary and discouraging, so thank you for saying all of that. It is hard work and dedication

[@HealwithLiz]

❤❤❤

[@nazishkalani3048]

Oh my God! Thank you so much liz. Whenever I see a video of yours I feel this light of hope inside of me. And that smile of yours makes me smile. Thanks to both of you for sharing. ❤

[@HealwithLiz]

Aw thanks so much Nazish really warms my heart to hear that. Appreciate your comment! ❤ Sending supportive healing vibes your way!

[@justbecauseican1410]

Thank you liz for all of the effort. Interview like these give me hope in times where i feel desperate. I will recover for me and my little boy.

[@HealwithLiz]

Thanks, that means so much to me. I believe in you, too! Sending you and your son lots of love! ❤❤❤

[@synnevashaustveit9825]

This is SO great with this honest DNRS/neuroplasticity talk! Thank you! (And Connies story was also the reason I chose DNRS 🌞) much light to you beautiful souls 🤗

[@HealwithLiz]

Thanks Synneva! ❤ Great to hear! Really appreciate your kind words and so glad you appreciated our candid chat! Sending ❤ back to you!!

[@HealwithLiz]

Hi everyone, the timestamps are now up! Please leave any comments if you found it resonated! Sending good vibes.

[@RaelanAgle]

So incredible!! Both Liz and Connie share such inspiring insights. I complete agree that there’s hope for everyone ❤

[@RaelanAgle]

And Liz you ask such great questions- thank you! You get at the information we’re looking for 😊

[@HealwithLiz]

@@RaelanAgle Thanks Raelan!!! I learn from the queen ;-)!! ❤

[@honorburza9110]

Great interview 👏 I also don’t watch the news for the past several years probably since my first child was born, I didn’t want that in the house.

[@HealwithLiz]

Thanks Honor! Thats wonderful that you're mindful about what you expose your kids to. I'm hoping to do a blog or video about news / digital detox and include other peoples inputs and how they created other healthy habits in a sustainable way. Now that I have a KZbin (which I check pretty often) and an active Instagram, it's not easy to have a healthy balance - because the algorithms are built to suck you in. We don't have TV / cable though. It was such a key piece of my upward trajectory and I remember how peaceful it was.

[@aynapaisley]

I just started practicing my full rounds and I noticed that the feeling of serenity and happiness that I exercise during visualizations tend to make me teary. This is also true in real life - the moments of great satisfaction and happiness even when very low key coming from mundane things can make me tear up from overflow of feelings and gratitude. Does it mean I'm doing something wrong? It fills me with happiness and joy, I'm not sad or mourning. But should I stop trying to feel it on such great level and create more calm and leveled visualizations?

[@HealwithLiz]

I can add my two cents here. I think it's beautiful that your visualizations and daily life brings you to happy tears. I too find myself crying tears of joy at cute moments with my kids or even adorable or moving things I watch. I think I cried happy tears twice yesterday. Calm visualizations are always nice, like in the evening or when they feel right. But if it is a positive emotion, then that's good. The only thing some programs discourage is doing high-adrenaline visualizations. Sending big hugs.

[@hugbloom2664]

Thanks for this interview! You are both inspiring and a ray of light when the way gets foggy. Plenty of things that Connie spoke about resonated with me and felt reinforcing of what works for me. Liz you asked some great questions. It gave me a giggle hearing hiw going to the gym was going to heal you Connie 😂 and I did a similar thing before finding out what was going on with my body, by taking really long walks! I appreciate the interview being mainly about mould illness and getting into some of the details, because it's the next piece of my puzzle to work on. I've healed about 70% from ME (😄) while living in a high mould exposure house amazingly, so i think I'm doing ok in terms of the stress response, but want to remove a lot of that mould exposure (especially given very toxic mould species). faced with huge costs to get proper remediation done on the house. Did you notice a difference once the remediation was done in your case Connie? Liz it sounds like you moved house? I guess I'd just find it helpful to hear what this is like for other people. Thanks again for this video interview legends ❤

[@HealwithLiz]

For me, moving was helpful also because it was the start of a new chapter. Even though our landlord finally did pay to remediate it, we had signed the lease on our new place by then - and I just needed to turn the page on that chapter. In the mean time, you can open the windows for cross flow and get a portable air filter like the Germ Guardian or the Air Doctor. I write about how to reduce mold in a blog post on my website. It includes what to look for in your house, how to keep things dry, and insights on hiring inspectors and remediators. It also brings in the nervous system aspect to factor that in. It's in the 'helpful tests' category, but is a comprehensive post. Now that we live in a bit dryer climate and healthier home (the Bay Area has lots of different microclimates), in the winter, we actually sleep with humidifiers on. While I have no issues visiting friends and staying in hotels which might have water damage -- I don't plan on moving into a 110 year old house again with a giant hole in the roof.

[@HealwithLiz]

One other thing -- in case anyone reads that blog post -- the one thing I'd update is that I do know some people who went to certain CIRS doctors to get testing, and then ended up down detox rabbit holes and their nervous system worse from all the fear. I think Connie and I cover the nuance well in our chat (and what to be aware of). I also write about a sensible strategy in the 'doctor strategy' post in my blog - that's one's also in the 'helpful tests' section. It explores the paths, and leads to the importance of the lifestyle and nervous system regulation aspect essential for healing.

[@HealwithLiz]

Also wanted to say thank you for the kind words - I appreciate it!! Big hugs!!!! 💕

[@ceciliamac4283]

To be human and not be perfect 👌Giving ourselves permission to live 💓

[@HealwithLiz]

💓💓💓

[@ireneeriksdon380]

Hello Connie and Liz! Connie did you heal even if you were eating food with high histamin? (Spinach/strawberries) or did you take it away? Whats your experience with clients is it possible to heal even if you eat a little food with histamin?

[@sarahmaurice3930]

Hi Liz, will you do an interview with healthyrecovery? That is his youtube name.😃

[@mikearcher24]

Hi really enjoyed the vid ive been going thru alot of what yall talked about all the the things cirs has been known to cause currently my hospital told me there was no way to test for mold an they referred me to psych because im to the point i can hardly function or take care of myself an ive even started having hallucinations and hearing things an feelike im on bad drugs when im not all tests at hospital always clean as of a week ago i moved in with relatives to get away from the water damaged room i lived in for 4 years (sirry i ment to keep this short lol) My family and i are desperately wondering what kind of doctor or specialist to seek out im very sick an worse by the day an hospital keeps sending me home

[@HealwithLiz]

Hi Mike -- Sending my support. First, take a deep breathe, and trust that your full healing is possible. There is light at the end of the tunnel. Good questions -- There is a test called C4A inflammation. It's a blood test for the level of inflammation. For mold, the test to determine what species it could be is the Great Plain Labs Urine MycoTOX panel. Emergency Rooms are not equipped for diagnostics. In the mean time, an Infrared Sauna (or a regular one) can be amazing, if you're able to tolerate it - which is the best way to release mold byproducts. For me, I was able to start with a few minutes and work my way up to much longer. Tanning Salons and Gyms often have a sauna. I went to one where I could adjust the heat. I looove the sauna. And then DNRS was absolutely was essential for my full recovery. Before DNRS I'd react to the smallest things, and it really made my nervous system resilient and just was a joyful experience (though it is work).

[@HealwithLiz]

Connie btw is also a wonderful brain retraining coach, for when you're at that stage and offers group coaching.

[@mikearcher24]

@@HealwithLiz first of all wow ty i wasent expecting such a speedy reply! And 2nd do u no what kind of doctor or specialist to contact to get these test done? I havent even been able to find the anwser online an thats even when i can even see or read so do u no what kind of doc to seek out?

[@HealwithLiz]

@@mikearcher24 Anyone with a medical license can order these tests I believe, however don't be surprised if you as a primary care doc and they flat out refuse or refer to get an allergy test which is not the same thing. You can google functional medicine clinics. Just be aware that they can make people more scared, cost a lot of money, and often they recommend expensive protocols. But good to see someone to get the right tests, if it will bring you peace of mind, and help lead you to a path out. In the mean time, have faith and do things to support your nervous system.

[@Im_Bennythebooman]

Does anyone have a link for a recovery story from a mom with multiple small children and zero family help ? I’ve been watching recovery stories for years and have yet to see one.

[@HealwithLiz]

That must be really hard raising small kids without help. I'm so sorry your husband abandoned you and your kids. Even though I'm 100%, I don't know how I'd manage with my two small boys without my husband's help.

[@lisabennett1253]

Hello Connie and Liz! On top of these symptoms (which I have) did you also have vision changes, vision issues that resolved? Thank you!

[@HealwithLiz]

Hey Lisa. I've heard many people heal from fuzziness, spots, and peripheral vision issues (I can't remember what eye stuff I had exactly - though know it was something). If your eye sight is getting suddenly worse, you will want to see an eye doc. Just know that your body can heal, even the oddest things. But ya, get it checked out if you can.

[@lisabennett1253]

@@HealwithLiz Thank you!

[@jamieessex6047]

19 years a CIRS patient. 10 years OF TREATMENT WITH A CIRS DOCTOR. bought DNRS 2 years ago. But im frozen completely alone . Is this common? I just wanna die. What to not do? What to do?

[@HealwithLiz]

Hi Jamie, sending a big hug. First, nothing I share is medical advice, just advice to a friend. It sounds like your CIRS doctor contributed to giving you a patient/CIRS identity and gave you a set of things that if you were to do and not to, then you would avoid symptoms. But as you say, it sounds like this didn't work out for you. If you are suicidal, I would recommend seeing a mental health care provider immediately. There is no shame in getting support, many people find this supportive. DNRS and Connie, the wonderful guest who herself is an example you can fully heal from CIRS, provide group support coaching. However it sounds like you need to really be seen and heard for your struggles, and might benefit from a place where you can do this, before joining any type of group with a container of mostly positivity. You are not alone in getting stuck with a program and looking for direction from someone on what to do. The answer will be within, but you can use guides to help you - many of us did. You can also consider other more nurturing programs that factor somatics - finding safety within your body - see my video with Rebecca Tolin. It sounds like you're in your mind, and cultivating safety there might help. Take from this message what resonates most for you!

[@HealwithLiz]

There is also Haven by Vanessa Your Grateful Guide and Sarah Jackson's Restore program, which talk about the vagal system and how to get out of freeze. Those are nurturing programs, which aren't really programs, they are monthly memberships that give you access to a beautiful toolkit of nurturing resources and monthly group live coaching.

[@Chelsea-mz4dn]

You could try carnivore diet which drastically helped me. I thought it healed me until recently when I realised if I deviate my symptoms return. Though, that's recovery enough if you can make the permenant adaption. You also have to get away from mould if you have it but it still worked well for me while I was exposed. You can do it ❤

[@bloom4096]

Dear Jamie, I hope you’re doing better. I’m 14 years in with me/cfs and all kinds of extra challenges because of it (like serious muscle atrophy). Please don’t give up. One day we will be healed and we’ll be so grateful we didn’t give up. 🙏🏽🌿

[@fathimasalahudeen3744]

Did connie done any detox protocols other than dnrs to heal from mold illness?

[@jerryiwanski256]

Other than DNRS, there is not a lot of information in this interview on what she did to recover. I’m a little skeptical that she could recover from as sick as she was only with DNRS.

[@terrance429]

I agree 💯 precent. There's no way this is all she had done to heal. Obviously she said she new about cirs and never once talked about the shoemaker protocol. I find this hard to believe. Not saying that dnrs doesn't work

[@MEF7]

E want to know too.

[@5000NATE]

Liz I'm a lot better now after 15 months but I'm still have symptoms I started meditating they gave me LDN have you ever tried that?

[@HealwithLiz]

Glad to hear you're doing a lot better and on a meditation path. I've read that LDN seems to block the opiate receptors at night so during the day the body produces more endorphins. I know people who took it that it helped. For me, that it helped some people with CFS, emphasized the nervous system / neuroplasticity / joy path that would be my way out - addressing the root. I was looking for something that there would be no side effects, even if only a small chance. Not medical advice. Sending my support!

[@5000NATE]

​@@HealwithLiz I took it for 2 days. Instead of taking it, I decided to for longer walks and meditate actively can get lot of sunlight it's been beautiful out here in Oregon. lately in a great help to me covid-19, last February around November. is when I started feeling symptoms go away I grew up Catholic now I practice gratitude not to say that prayer isn't comforting to me usually when I wake up I feel like I have to meditate now it's something. I need to do part of my life but I'm on my way out of this situation soon everyday I feel much better I'm no longer crashing but I have the tiredness still kind of there once in awhile learning how to baseline what's the biggest thing now I'm healing and recovery thanks to you honestly you spoke to me when I was at my worst Zen meditation has changed my life even with my anxiety issues and issues towards traumas I'm even putting myself out there again trying to meet a new woman I'm healing my past as I keep progressing to better health I don't know how to write with periods or commas so please I'm so sorry about that

[@HealwithLiz]

@@5000NATE Oh the sunshine and nature walks were a part of my healing too... and like you say gratitude, which seems to be a part of so many people's recoveries. I also grew up Catholic, but am more spiritual these days. I had a get together on Saturday, and I notice myself more present and grateful. I also took a couple moments to just be in my back yard look at the sunset and take in the moments. It's something that was such a part of my healing, and I'm bringing it back because I think it's also a part of really enjoying a good life. I'm also considering getting back into meditating because of how much peace and creativity that came from it.

[@5000NATE]

@@HealwithLiz I took your advice, I'm coming out of this now everything is so much better now I have less pot symptoms and basically dizziness upon standing and also my fatigue completely healing now I took responsibility and taking care of myself some sort of private but I will make a little video expressing my gratitude towards you and the community the help me get out this sometimes I tell myself it's hard to be patient I've come a long way I will never change this now it's going to be part of my new lifestyle even when I get back to working out full-time and everything always dedicate two-and-a-half hours to mental work spiritual work practice peace and gratitude and joy

[@lisabennett1253]

If Connie might see and answer this.............did you practice for a while without any "proof" that anything was even happening?? You just kept going anyway, without seeing/noticing anything?

[@homemakersheart3614]

Hi Lisa, this is Dee. I can't answer for Connie, only my experience. Yes! Just keep showing up and trust the process. I had great shifts the first few weeks, then it slowed but I still saw some changes. Then I had about 2 mths of what I thought was nothing. But I regrouped and really practiced being present during the practices, being aware of my thoughts and also wrote down ANYTHING I noticed that was different. Such as I could make the bed in our camper...no IT"s! I swept the floors, no IT"S, I walked through a confrontation and able to be at peace AND listen with compassion and not get lost in fear. It's still happening, just at my body's pace.

[@lisabennett1253]

@@homemakersheart3614 Thank you so much for taking the time to answer this for me!