Life with an Autoimmune Disease

I wasn’t going to write this or go public with details, but this morning I changed my mind.

Earlier this year I asked readers if they would like more Dragos and Pia as comfort reads and got a resounding YES in reply. So after some thought, I set up a scenario that would mean readers could get at least part of the story as quickly as possible—a set of four linked stories. I wrote the first so that the reader could enjoy as much of Dragos and Pia interacting together as possible.

So that’s what I did. Readers got over 100 pages of Dragos and Pia together, and it was funny and it was fun. But because I had constructed the story the way I had, it ended on a cliffhanger.

I told the story the way I thought it should be told, and I’m aware that some readers haven’t liked the change. And that’s okay. Writers get to write what they write. Readers get to feel what they feel. And my good intentions for writing the four novellas went on the skids, because, man, it’s 2020.

This has been a very bleak, black year for many people.

It has for me as well.

In retrospect, I wish I hadn’t set up the four linked novellas, but it is what it is. Moving forward, I think I should only go public when I have completed stories.

You live and learn, right?

Here’s what happened. Earlier this year, I couldn’t hold my phone long enough to play an internet game called June’s Journey. Once at Target, I had to confess to the cashier that I was “a little bit disabled” that day and I needed help out to the car. I was in too much pain to make it across the parking lot by myself. I lost months at a time in disabling flareups. I’m not writing that to complain. I’m telling you what happened.

It’s an autoimmune disease. It is what it is. Sjogren’s Syndrome and the high, dry altitude in Denver don’t mix well. And I was stressed enough with life, the pandemic, and the civil unrest that I could hear from my little rental in Denver, that I wasn’t able control my comfort eating. I was eating the Standard American Diet which, as it turns out, is poison for me anymore.

So I took time off and moved, and I took precautions so I wouldn’t catch COVID, and now I’m at the other end of things in an area of the country where I don’t know anybody, and there won’t be any holiday gatherings with family, and I will have to figure out an all new survival strategy for how to cope with isolation, all so I could get some semblance of my life back.

Today, with the return to sea level and the implementation of an extremely limited diet (no standard American diet, no stress eating, no standard keto diet, no coconut or almond flour any longer, no more baking), I was able to take a 50 minute walk on the beach. I’m still getting very tired, but I wrote 3,000 words a few days ago, and I plan on writing more after Election Day tomorrow (November 4th). There is still all kinds of room for improvement, so I’m excited to see what the next 12 months will bring.

I was so thrilled on my walk I went a little too far, so I was limping when I got back to my car. Tomorrow I plan on walking again, but I may do a gentle stroll for a shorter period of time.

This year has been hell. But this morning was fucking awesome.

The scene on my walk early this morning.

The rest of the linked novellas are coming, and more stories will be coming after that too. None of it has happened as fast as I had intended or wanted, and some people won’t like it. Because there’s always somebody who doesn’t like something.

And it is what it is.

I know times are tough. Believe me, I know. I know readers want new stories, but please don’t email spurious complaints to my assistant Gretchen. We’re not a mega-giant corporation like Walmart or Amazon (and even then there’s a human being on the other end of the phone in a customer service department). We’re just two people. She hasn’t complained. She’s a complete professional, but she’s going through the pandemic and the tough times too.

We’re all in this together. You never know what battles someone may be fighting, so remember: if you’re not sure how to be, always be kind.

Thanks, as always, for your time.

~ Thea

46 Responses

  1. Kathleen Kaufmann says:

    Thea:

    I have Lupus, and Fibro. invisible things and flareups suck. You keep on keeping on. Do what is right for you and celebrate the small victories until they become bigger again. I’ve had to retire from nursing for 30 years, sell my farm and I understand making all the changes that are sometimes forced on one wether we like them or not., Sometimes, life just sucks rocks through a bendy straw. We’ll wait for you to finish your stories in your own time, because they are well worth waiting for!

    Take the time to heal yourself. Then we’d love it if you can entertain us once more. Candles and prayers.

    Kathleen

  2. Christina Morris says:

    I love your books and want them like an addict BUT you must put yourself first! I stand behind you and hope all will be better for you. Thank you for letting me/us know.

  3. Frasc says:

    You have brought me hours of enjoyment that have taken me through difficult times including sitting by hospital bedsides. (It also provides entertainment to the nurses who’ve seem me laughing out loud and then attempting to like a responsible adult questioning doctors.) I’d love more Dragos and Pia stories. I glad you got a diagnosis because Sjogren’s syndrome is a tricky one – my Mom has it – a life changing challenge. I trust you’re aware of the various support groups? Your imagination is needed for times like these, so please take care of yourself so you can take care of us.

    • Alice Lescault says:

      I have loved your writing for years and after reading your blog I will enjoy them even more knowing the challenges you face to share them with us. I understand how difficult life is with an autoimmune disease. I have rheumatoid arthritis, fibromyalgia and suffer migraines. There are days my biggest accomplishment is getting out of bed.
      I will keep you in my prayers, and thank you for sharing what you have been through and continue to deal with as these diseases are chronic.

  4. Carol Heisz says:

    THANK YOU for posting this update. Hard as it is to share, I appreciate the reasoning behind the delays in publishing books that I love and have been looking forward to in these trying times.

    Here’s a wish that your health continues to steadily improve, your good days outnumber your bad and more words written in Dragos and Pia’s books.

    Thank you to Gretchen for all she does to support you as well.

    Take care of yourself,
    Carol

  5. Barb says:

    Thea,
    Life is crazy this year in every way. Hopefully 2021 we get better. We are all in this pandemic mode together. Do not worry about us. First and foremost, you need to take care of you. You are the priority.

    Whatever you want to share with us is fine. We can be patient (what else are we doing lol). I look forward to reading anything you write whenever.

    Take care of yourself and your cute dogs. Be safe. Be well.

  6. Minna says:

    I am so happy to hear you were able to make these tough decisions even while really feeling the effects of your illness. I know how pain just erodes away minutes and sometimes hours from the day making decision making or action really really hard. So kudos to you! You made it! And by the sound of you really made a good choice. The beach looks amazing, what a wonderful thing to have so close to you that walks there are on option.

    Now, I have been wondering if many succesful writers are a bit workaholics of sorts. I get it – your paycheck is depending on the actions of us readers. But more than that I think it is your dedication to the stories and your readers. But there is a limit. And I think the limit is catering to the modern day “give-me-mine-now-exactly-now” attitude. We are so used to getting many things way easier than our forefathers that it is making us a bit bananas. And in some cases a lot bananas. Combine that with an amazing availability from our writers -> bada-bing-bada-bung -> some go crazy.
    So summa summarum – glad you are feeling better. Happy that you are able to write some now as that is what you do, right 🙂 BUT happy to wait until you are able to deliver also.
    Have a lovely holiday period both you and your wonderful assistant Gretchen!

  7. Rebecca says:

    So glad you are taking care of yourself! I hope your faithful readers understand how tough it is to create while in pain and under stress. That beach looks lovely and I know in time you’ll meet great people where you are who may become a new kind of family. Stay healthy!

  8. Ann Keis says:

    As I once told you in NYC you had me at a penny. Love all your stories, I will wait if I need too. Please keep well and keep writing. Have lost to many things in 2020 to have you added to the list. Again keep well, virtual hug. Sending warm fuzzies.

  9. Always put yourself, your health, your well-being, your peace of mind, and your family & friends first. We can live without more Dragos. Losing you would mean losing even the chance of more stories. Knowing that by demanding stories we’d made your life a little worse, that would be terrible. And if someone doesn’t understand, well, the rest of us will just send you even more loving & supportive thoughts to make up for that shortfall.

  10. JoAnna says:

    Hello.
    I was a substitute teacher before I decided to take a steady job w/benefits as a paraprofessional. I working thru Type 2 Diabetes, Arthritis, & a bit of depression. That was in the 1st week of March, 1 week before all the schools closed. Luckily, unemployment kicked in, but it’s been interesting. On the weekends I play 3 masses at 2 churches which lets me see folk outside of the grocery stores & delivery men. When I saw my doctor in August, he asked how in the H### did I lose weight during Covid-19? I lost about 1.5lbs a month.

    My Arthritis painfully flares up if my blood sugar gets too high ie SAD diet. At the same time I was craving fried chicken, pizza hamburgers, French fries, etc… It was only the knowledge ( a few experiences) that I’d be in pain & feverish (high blood sugar) & paranoid that kept me somewhat healthy. Gardening helped. Playing music I liked helped. Learning how to knit hats & shawls from lace weight yarn helped. So yeah, creating helped. Reading your stories helped because of the worlds you’ve created. I’m even thinking of writing my own stories now because of you & authors like you.

    I’m glad you found a place to live that helps your health. Glad you’re walking along that glorious beach. So sorry you are apart from friends & family but if you reach out, you might find new neighbors & friends willing to share a social distanced cup of tea.

    Thank you for your work. I look forward to more stories.

  11. Joanna says:

    Thea,

    Invisible disability sucks. (“You don’t look sick.”) Some days I’m practically normal, and today I am in tremendous pain. We all have to give grace, to ourselves and everyone else!

    Isn’t election day today, November 3rd?

  12. Sheila Willert says:

    I am so very glad you are better! I love your view of the beach. FaceTime, Zoom or Skype are wonderful things to stay in touch! Take care.

  13. Janeen Horne says:

    I have read every book you have written, own most in paperback, some on Kindle, and recently got American Witch on Audible.
    I love your writing, but your health always come first.
    It will make some readers upset that they have to wait, but like you said, it is what it is.
    Enjoy your new space and view, and take care of yourself.
    We love you.

  14. Linda Grant says:

    You keep on keeping on however you feel comfortable. Your books have given me a lot of enjoyment and I am awaiting the Pia and Dragos books.. I’m going to wait until all are available and read them in one go. Looking forward to the American Witch books too. I have some series I re read and yours are one of them . Except I cant read the one where con dies. Just too sad.
    I hope you feel better, sometimes things are tough. Best wishes.

  15. Kimberly A Paulson says:

    Blessings to you and all you do. I am glad you are taking care of yourself which is the important thing. I hope your journey goes well, we live and learn and can only learn from so called mistakes (not a mistake really) think of how far you have come from not knowing things about what was not working for you. Bless you again! take care and don’t worry about books. Those who love you understand, if they don’t well they aren’t people whose opinion you should care about, easy to say I know. Anyway love you and take care.

  16. THERESA L HAUSERMAN says:

    You are an incredibly brave and strong person who I have admired greatly. You recognize what is wrong and take really scary steps to fix it. You moved put of the country ALONE for heaven sake! Remember.. for every one hateful person out there you have two who you inspire to be stronger than they thought they could be.

  17. Melanie Simmons says:

    I have both Sjögren’s syndrome and Lupus, so I know how tough it can be. I’ve struggled to find the right meds for me, but I’m finally doing better. I’m sure you’ll find what works for you too. Good luck. {{{{hugs}}}}

  18. jogger/Eragon Lu Ptt says:

    cara Thea, sono una lettrice italiana

    è un caso che sono capitata nel blog. mi spiace davvero tanto che non stia bene di salute ed abbia avuto un periodo molto difficile.

    mi auguro che davvero cominci a stare meglio.

    adoro le sue storie delle Antiche Razze, alcune sono veramente ed assolutamente stupende, questo rende INGORDI i lettori!

    si prenda il suo tempo, cammini sulla spiaggia (invidia! a Bologna non c’è il mare!) e quando starà meglio aspettiamo altre belle storie nuove. finora non ho potuto leggere ancora nessuna delle sue nuove storie, speriamo che l’editore italiano non ci farà poi attendere troppo. sto ancora aspettando di leggere American Witch.

    auguri, abbia cura di se
    Luisa

  19. Tawana Hutchinson says:

    I have an autoimmune disease, and while its no where near bad as your. I just wish you well. I pray you find what works for you . Self care is much much more important than putting out books. As a fan of your writing i will be waiting patiently for you work. Blessings and luck to you.

  20. Billie Pardoe says:

    You are an amazing woman. My best friend has an autoimmune disease. Just take each day that you can and take time to love wherever you can. He hears you. I pray for you that you can feel peace.

  21. Peggy Marts says:

    I have severe rheumatoid arthritis. I was diagnosed around 12 yrs ago. It is always active, never let’s up on me. My eye Dr diagnosed Sjogren’s dry eyes were such a horrible problem . Since then, my teeth have gone bad too.
    It sucks, but the only thing I can do is get up everyday and keep plugging along.
    Just know that there are lots of us in the same boat. Keep getting up!

  22. Mary Kay o’keefe says:

    You are very important to me, you’re my favorite author and I don’t care how long it takes you to write a story when it comes out I will buy it and smile and thank you for it!. I am so happy to hear that you had a fantastic walk and hope you continue to feel better and I’m proud of you for doing what you need to do to have a healthy life!

  23. Chrissy says:

    Hi Thea,
    Thank you for taking us into your confidence and telling us what has been happening to you this past year. I think there are many of us that empathise with you. We are going through a terrible time in the world and at a time in our lives when it’s harder to cope, but we do, we try and overcome the things affecting our lives and I think for you it has been especially trying. I’m so glad that you are now finding life a little more uplifting after your move and change of lifestyle. I don’t need to outline what has happened in my life because it’s somewhat similar including a move in states, but and it’s a big BUT, I am not an author who brings untold pleasure to so many, many people with stories that allow us to escape the happenings in our lives and for you and your fellow American citizens it is so much more. Please know that the majority of us are just happy to hear from you, read your writing as and when it is published and happy to wait for any stories that you produce when you can especially as we so want you to continue when you are able and have you and your work in our lives into the future. Please continue to look after yourself and your fur babies with the support of your family and millions of readers. Sending you all the healing thoughts possible. Love and huge hugs from me ❤️

  24. Nancy says:

    What Chrissy says above, is well said and written and I agree with her thoughts and sentiments towards you. I so enjoy everything you write and your blog is always a pleasure to read. Through your good times and bad.
    Thank you for your openness.

  25. Alethea Lyn says:

    I just read your blog and I just wanted to say two things in response. First, your writing is a beautiful gift. Thank you for sharing this with us. You have given us so many wonderful stories and characters. I still remember the first time I read Dragon Bound. I liked it so much that I turned around and read it again and again and … well you get the picture. Second, you are such a courageous and resilient individual. I wish you well. Walking is a great exercise for recovery. Stay safe.

  26. Caro says:

    Hi Thea, I love your many stories on the world of the Elder Races, especially Pia & Dragos. It sucks hard to have an autoimmune disease process wreaking continuous havoc in your life. Having plans disrupted, ideas tabled till the flare dissipates, and life in chaotic misery when all you want is to do is have one good day. I wish I could give you one of my good days to get you back to feeling better. I’ve had to suffer through my autoimmune diseases with endometriosis since I was 22 and hypothyroidism, for the last five years, due to a massive cerebellar stroke. All I can say is that your books diverted me from my own issues. I hope your body will give you some respite and the strength to keep fighting.

  27. HarriAnn says:

    I agree wholeheartedly…put yourself first. As readers we will be here and continue to enjoy your books delving into the with world of Dragon. However that can only be accomplished with you. Thank you for sharing!

  28. Maria says:

    I have the same Autoimmune disorder and I have had patients with it. It’s not easy, but anyone with an autoimmune disorder is a warrior!
    I enjoy what you write, keep it going as long as you feel comfortable and able! Prayers!

  29. Sylvia says:

    Thank you Thea for the gift of your writing to so many of us. As Ann Keis said, you had me at ‘a penny’. I have loved everything you’ve ever written and always grateful for any of your work that comes my way.
    2020 has been a difficult and challenging year for many of us and dealing with an autoimmune disease on top of it just adds to the stress and worry.
    You are totally awesome to figure out what was happening to you and do something about it.
    The view from the beach is gorgeous and hoping each day gets better and better for you.
    Taking care of yourself is job one now. We’re here for you and sending positive healing thoughts your way.
    We love you Thea and want only the best for you.

  30. Andrea says:

    Thea, your health and well being are more important than anything else. Take care of yourself and when you are ready to write we’ll be ready to read. Thank you to Gretchen, and hang in there both of you…

  31. Rose says:

    Do whatever you want with the spoons you’ve got for the day and don’t feel guilty about it.
    Hope you have more better days than bad ones.

  32. Lauryn says:

    I’m so glad you were able to move, Thea, although we all know moving itself is stressful. The view is gorgeous. Walking a beautiful beach, hearing the timeless surf, always feels restorative. It takes such strength and courage to lay your cards on the table with the people in your world. That’s quite an achievement in a year when so many of us retreated into our shells! I’ll keep you lifted up for grace, strength and healing/stabilizing outcomes. Regarding your writing, wow, you’ve given SO much to our lives with everything you’ve written thus far!!! Anything else, whenever and however, will simply be a further gift we can’t ask of you but will always, always be joyfully received. Warmly, Lauryn

  33. Elena says:

    Well done, Thea!

    As a friend and relative of many people who suffer from various autoimmune diseases (from Crohn’s, UC, Lupus, MND, MS), I can only congratulate on facing life head on, and doing a great job of it!
    You should be feeling very proud of yourself because even for people without health issues it is not easy at times – and 2020 has given us all a run for our money – but overcoming all of that while battling your own body, it is a demonstration of unwavering courage.

    I am sending you good vibes, and wish you the best of luck with this new phase of your life: it looks like you picked a most beautiful place to move to.

    Enjoy those beach walks, look after Number One, and everything else will happen eventually. And if plans get disrupted, just come up with new plans.
    Stay safe out there!
    Warmly,

    Elena

  34. Karolyn says:

    Thank you for what you’ve given us. I’m sorry that your body is attacking you. But it sounds like you are doing all you can to support your body and fight the disease. Don’t worry about the characters and writing. Do what makes you feel better. Beautiful walks on he beach help a lot. Don’t forget the sunscreen.

  35. ANN M BONK says:

    Sincerely sorry to hear about your medical issue, but happy that you’re able to do something about it.
    As far as your new location is concerned, I’m sure that you will be able to make new friends after COVID-19 is no longer the crisis that it is now. Until then, be sure that you’ve got googols of friends that you can reach out to “virtually”, and vice versa.
    As far as your writing is concerned, I’m ecstatic when you release anything new. Since I’m a “real book” bibliophile, I plan on waiting patiently until all four Pia & Dragos novellas are available on paper, and purchase and devour them all at once.
    Best wishes for continuing better health,
    Annie B.

  36. Sandra Williams says:

    Thea, I thought it was time for the second installment of The Unseen, so I came looking… I’m glad I did. Girl, you have nothing to apologize for. You are human, and a pretty nice one at that. I am one of your most avid readers, and even I can see the hand of God in your life. Take the time to settle into your own skin. Relax. Enjoy the moment. We readers are here for you in as much a way as we can. I will hold you up, stand in the gap for you. Thank you for the enjoyment you’ve given through the years. I’ll wait for what comes next. When you’re ready and able to bring it into reality.
    Take care. Hang tight. Keep calm and carry on.
    Love,
    Sandy.

  37. Sarah McCormick says:

    Hi Thea,
    I love your books and I’m desperate to see where this current thread goes. But, my wants are not for you to worry about! You look after you and don’t feel gulity or take responsibility for how people choose to respond to the delay!

  38. Anne Marie Macdermott says:

    Thank you Thea for all your wonderful books. We will wait as long as it takes. And if you decide you can’t even continue writing, so be it. Things happen. Llfe happens.

    I am personally suffering with Multiple Sclerosis, so I know what you are going through, kind of. Please look after yourself first and foremost. You’ll have good and bad days, but I am so sorry people have been pressurising you. It makes me cross, and embarrassed hat you might think badly of all your fans.

    You are correct that people never know what’s going on in indiviiduals’ lives, and it could be anything. Being kind is the best thing.

  39. Tracy Holliday says:

    Check out the books of Joe Dispenza (Your are the Placebo) and Bruce Lipton (Spontaneous Evolution). With their books, YouTube videos, and videos on Gai’sa streaming service, let your inherent magic become real in your body in an amazing way.

  40. Melissa says:

    I feel this so hard. As someone living with an invisible illness in the Ohio River Valley, where the temperature can swing from the mid 30’s in the morning to the high 70’s by afternoon, I can attest to how hard that can be on a body. Add stress into the mix and you can forget about it … nothing is getting done.

    Take the time you need. We aren’t going anywhere. We love you and your worlds too much. Gentle hugs ❤

  41. Jo Everts says:

    Heal & get well! I’m looking forward to the continuation of Pia & Dragos’ story as ur stories r fantastic but u need to take care of ur self first. Be well! Take as much time as u need! We’ll b here rooting for u!

  42. Jacqueline says:

    Hi Thea, I’m glad you were able to find out what was going on and were able to take care of yourself. The fact that you moved in this pandemic and are still able to keep your fans updated on what’s going on is amazing. Please do not feel like you are letting anyone down. The stress authors are under to produce in this age of instant gratification is overwhelming. Your books are well worth the wait and will come when they come. In the meantime, please continue to take care of yourself and I hope you settle in nicely at your new home. Sending healing vibes your way!
    Jacqueline

  43. Kay says:

    Love your attitude and grit/determination to do what’s best for you!
    Glad to along on this journey called life.
    Looking forward to reading your stories whenever you get them out.

  44. KRIS HT says:

    While we love your writing, it is more important that you take care of yourself. Enjoy your life. The only way you’d let us down is if you let worries about us or our desires negatively affect you.

    May you be well and be at peace.

  45. Vanita says:

    Glad you are doing better. We will wait for the books. I am sure they are worth waiting for. Take care of yourself!