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Detailed Health Update from Kyle - December 2023
🕑 Added 2023-12-21 21:17:18 +0000 UTC(From Kyle, Dianna's husband)
Huge thanks to Destin from Smarter Everyday for making a great video about Dianna’s journey, and his visit to see us earlier this year. I hope you all had a chance to watch it here [https://youtu.be/xbcjf-hrOAs]
As most of you know, Dianna has been diagnosed with ME/CFS and Long Covid (which many - but not all - experts agree are the same disease). While there haven’t been any transformational changes since she first became bed bound in February of this year, I’d like to share a little about what’s happened and how she’s doing.
In short, we’ve tried a lot, and most of it hasn’t been particularly notable. She’s done supplements, physical therapy, meditation, prescription medication, hyperbaric oxygen, you get the picture. For Dianna, some of the medication has been successful at relieving symptoms and stabilizing her conditions, but nothing has moved the needle significantly in terms of quality of life.
In early July of this year, Dianna was doing physical therapy to try to regain mobility and independence. May and June were relatively good months, and although she was very sick, we know it's important to try and prevent physical deconditioning to the extent that is possible. In retrospect, we probably pushed too hard. She had a severe crash lasting months, and only started to come out of it in early September, just before Destin’s visit.
It's difficult to explain how painful - physically, mentally, and emotionally - these crashes are. Her body reacts to everything with severe inflammation and allergic-type reactions to normal, everyday items like food and clothing, temperature changes, fragrances, basically anything that isn’t her. This “reactivity” is driven by MCAS, one of the sub-syndromes of ME/CFS. Periods of intense MCAS activity are especially difficult because the allergic reactions drive acute cognitive changes that cause severe and sudden depressive episodes. I’m sure most of you have heard about depression and mood changes with long covid, and this is one of the ways it happens. Of note, there are times that taking an antihistamine or anti inflammatory medication will immediately improve her mood or snap her out of a depressive episode. Crazy stuff.
The summer crash was likely accelerated by emotional stress inherent to the terrible living conditions she’s had to endure. As she puts it, in order to avoid overexertion, she has to “unlearn what it's like to be human.” This sentiment is common in patients with severe ME/CFS - the idea that doing the very things that bring joy and fulfillment also make you worse. This is why we desperately need better treatments for long covid and ME/CFS.
After Destin’s visit in September, we tried a new medication to which she responded poorly. And so she was back in another crash cycle. While this one was shorter, it was emotionally more difficult to go so quickly from one crash to another just as she was free from pain.
Now its mid December, and over the last several weeks she has once again stabilized. We are committed to taking it slow. We’ve tested and tweaked her medications methodically over the last few months, and we have a regiment that targets MCAS and neural inflammation. These medications work well for her with minimal side effects.
We know she has other underlying conditions as well, such as SIBO and leaky gut. The problem is that these conditions are difficult to treat when her health is so precarious - as we’ve learned, medications (especially new ones) can cause prolonged crashes. So treating these conditions will be slow or will have to wait until she’s regained more strength.
But I view this all as kind of a positive snowball effect - once one thing heals, it will be easier to treat the next. She’ll keep gaining momentum and heal faster. Get back some of her independence and activities of daily living (ADLs, as they like to say in medicine). She is pointing in the right direction, and even though she can’t walk or even stand, and she can’t talk for more than a few minutes a couple times a day, she is hanging in there. She’s had a big positive mental shift that’s making the day to day easier for her too. She knows she’s stuck here, unable to live her life, but also believes that it will get better.
And although we do believe that, I don’t want to end on a positive note here, to do so would be insincere. Dianna is suffering everyday beyond what I’ve ever had to endure, even for a day. The acute physical injuries I’ve had - broken ankle, wrist, dislocated shoulder - and the “long” recovery periods following them are nothing compared to an illness like this. She is suffering so much, and in pain all the time, but there is no objective way to measure progress. So we are prisoners, forced to wait in a room for a day when she can be released.
So that is the reality here - we gently push her mind and body with therapy and medication, and we hope that one day she will improve substantially. But there are no dates - to set a date of recovery would only lead to disappointment. This way, without expectations, we can be present for and celebrate any win that comes her way.
Comments
Anne McWilliams
I think your account has been hacked. I got a post from an account with an obscene ID, that linked to your post.
Michael Jones
Thank you for your inspiration. I will try to continue teaching and fostering science education and communication with the heartfelt dedication that you and Diana have shared.
Mark Lam
I have absolutely no way to relate to what Dianna's going through. My wife did develop non-Hodgkin's lymphoma early in our marriage so I know a *little* of what you're going through Kyle, but still not even close. I joined this patreon after watching Destin's video because while I can't related to what you're going through, I *can* relate to Dianna's desire to learn and spread knowledge, and that's worth supporting! And if that helps her survive, heal, and hopefully get back to a "normal" lifestyle (who cares about YT - just being able to be human again) I'm happy to support it. Keep up the hard work Kyle - it will pay dividends. You guys are in my thoughts and prayers.
Kyle, perhaps Dianna would enjoy your reading the weekly SciSchmooze for her. Three of us write it and sorely miss including Physics Girl content. https://baskeptics.org/
TheOzarkWizard
Get well soon
Ted Loebe
Hi Kyle, you're a super hero. Not super natural, you can't fly unaided by some contraption. (That's a technical term). Superhero because you couldn't see this comming. You didn't get to decide that you would dedicate this part of your life to being so committed to Dianna. It might have felt like it was too much to take on. Not everyone has the courage to accept a responsibility like that. So many things happened, coincidentally, that created a situation with wins, your marriage, and losses, baggage, pun intended. It seems like a whirlwind of intense emotions that got entangled and it came out the other end as what we have now. Obviously, that's a very over simplified description, but without the marriage, there wouldn't have been a honeymoon and the missing baggage and the covid etc. As the ashes settle you, Kyle, are there devoted to her well-being and she just happens to have millions of, for the most part, nameless, faceless human beings who, to the extent possible, love her and want to do whatever they can for her. So many things could have gone different and this wouldn't be what we're doing now. Personally, I think I saw Dianna in much the same way you have. Dianna is multidimensional and it boggles my mind how many aspects of wonderful and brilliant and charismatic and that thing that she communicates with a sly smile and a play on words. She can grab your mind and wrap it around some information that turns on a light switch in you consciousness. Thank You Dianna! So we'll wait as long as it takes for you to set up a new improved office / studio and get back to physicsing.
Kyle, I wish you a sincere success in this long journey! Also I would strongly recommend to look the experimental drug masitinib seems to target the mastocytosis that is a key molecule in MCAS (as well as severe mastocytosis which sounds very similar to the symptoms you are describing) I don’t know if you will see this msg hopefully you will and hopefully this drug might help. If I can be of any help regarding it or anything please reach out to me! I wish you sincere success in this long road and I m sure the end of this journey will be mark by overwhelming success!
Dear Diana and Kyle, I hope you know how much positive energy is being sent into the universe for both of you! As someone who spent 12 years (and 35 specialists) to get a diagnosis for my ailment - which included multiple prolonged episodes of strict bed rest, the toll is immense; physically, mentally and most of all, emotionally. Through my experience, my unsolicited :-) advice is try to remember to be kind to yourselves. That was something I was never very good at. I was so angry with my body for not allowing me to do what my mind wanted. However, once I learned how to offer my whole mind, body and spirit grace to do what it is capable of (i.e. healing, albeit on its own schedule) my mind and body finally seemed to figure out how to get on the same page and it only added to my recovery. And, Kyle if you aren't already a member of some sort of support group, I highly encourage you to find one. It's lifechanging to become a full-time care-giver not to mention once Diana heals, the PTSS you might experience every time she comes down with a cold or flu and "will it lead to another triggering episode?" A support group of people who have been in the same storm (different boat, perhaps) as you may help you release the energy you have built up in your body as a result of caring for her so well. My heart bleeds with sorrow for what you both are enduring. I'm sending all my 'spare' energy to you. Gentle hugs!
Don
I just saw Destin's video so I came to back you so that anyone who leaves is compensated for. I had long covid and continue to have longer term impacts. But I am able to work again. You will get through this. I know it's overwhelming and you feel like the path is all uphill right now. But I am living proof that you can come back from it. Take the time you need. Get stronger. Keep trying new things to find what works. And I hope to see your smiling face in a video about some new discovery in physics that you are super excited to explore (once your health is fully recovered).
Justin Kim
Upped my membership level
Monte
Hi Diana and Kyle! Destin’s video let me know about Physics Girl! And the need to support You in Prayer and on Patreon! And I am doing both and will continue! Deepest Blessings and Healing and Wellness for You!
Jean-Philippe Suter
Another news story about research advances in ME/CFS and FM, which gives me further hope that sooner rather than later, doctors will be able to treat these conditions post- Covid and hence help Dianna: https://www.lymedisease.org/decoding-neurological-diseases/
Jeff Shaw
Physics Girl, it is okay to be sick and you are going to recover. Get rest when you need to. Get strong always. Everyone else, please spread the word to help Kyle and Dianna. Dianna is SO important for so many girls in the world who need to be contributing to science. My family
Hi Dianna and Kyle.. Im also a confested science nerd and just heard about your condition, so had to join and pledge my support for your quick recovery... Your new mission is to Get well soon. Hugs from all !
Just one of the millions that follow you... Hope that you get better soon.
Hey Dianna and Kyle ! Just wanted to wish a merry Christmas and a full of hope and kindness thought to the both of you ❤️ I've seen Destin's message on your channel I understand your concern about your patreon followers and the fact that you can't make videos. Here's how I see it : You are a tree, a wonderful tree, a tree of wonder as well. All those videos, all those things more understood from us thanks to you, all the times I see a calm pool in the summer and I reach for a plate in the kitchen. Those are your fruits, and we've, at least I have, enjoyed each and every one of those. And let me be clear : each cent I spend to help you and Kyle get you to make those fruits again is never gonna be a wasted penny. Cause here is the most magnificent thing you succeed in doing, all those years : a complete stranger, one ocean away, never seen you, probably won't ever, but still know you as much as you let in your videos. And I'm thinking about you and Kyle on Christmas morning, hoping you are going strong and wishing I could do more to help you. So I hopes you'll read this message, it'll find you well and reaching for a path to recovery. A merry Christmas to you and Kyle, never loose hope there is just yet to much wonder to explore and give us as fruit.
I'm glad someone in my discord shared Destin's post, and I'm glad people are sharing. Happy to help out even if it's only a little, and I hope everyone else does the same. good luck, hoping for the best. Much love and hope. <3
rcr62
One of the things in Destin's video was about Diana worrying we are not getting anything from supporting her on Patreon. Destin is right, speaking for myself and I am sure everyone else, we are doing it because we love her too. She (and you) owe us nothing. To be as blunt as you were in your comments, I have my serious doubts that we will ever see another Physics Girl video . . . and it doesn't matter. Her videos brought so much joy, she already paid her part forward, its our turn to return the favor. I can't even imagine being either of you in this situation. Best wishes and here is hoping to see this get better no matter how long it takes.
Marcin Bator
I'm not even trying to image what both of you are going through. One thing I know is that one day you'll both get to read all of these positive comments together and make videos again. The determination that you both have is what makes me believe that. In the meantime, we all will keep supporting you because this is the community that you built. All the best to you!
Sending you both positive energy from Hawaii, just get better Diana and thank you Kyle for being you.
Jonas Printzen
Loved to see the update brought by your friend at D from Smarter Every Day. I use sustainable low-carb myself to get better when needed, it works really well when you pay attention to details. And, I totally agree about focus. Get better! You have done a lot to revisit, so stay cool about that! I re-joined after that video, opted out when I was struggling, now I'm good so, I'm in for the support! Keep smiling and enjoy little things in life! :-)
