There’s a reason why Chronic Lyme Disease is called Chronic Lyme Disease. Approximately 20% of Chronic Lyme Disease patients slip out of remission. :-(
 
Last year, despite showing so much promise and improvement, some of the old pre-Lyme issues returned (original diagnosis = 2015). In 2020, the world became more of a chaotic mess with COVID-19, political insanity as well as injustices, inequalities and tragedies across the board. So, stress and the fun that comes with it is normal…right? Right.

But the issues continued. And they got worse…like 0-to-60-down-a-deep-vortex type of worse. Hiding my issues worked. Until it didn’t. I had to get real and face facts. Lyme had returned. I knew it.

I.
Just.
Knew.
 
My response: &(*&)(*&^%^$#@%&**(&*%$#!@%%%&^*!!!!! (That's a summary)
 
What was the largest diagnostic tell? Enlarged liver and spleen, of which I have both. And now every little rumble from my left or right side sends my anxiety through the roof.  Out of remission. Officially. Yep, Chronic Lyme Disease has returned like a terrible movie sequel, bringing with it unwanted "houseguest" Babesiosis (Babesia). Babesia is a commonly occurring (and re-occurring) Lyme co-infection.

Prescribed treatment? Aggressive. It will last as long as it takes. Treatment starts TOMORROW. And, God willing, may the odds be ever in my favor!!
 
So here I sit. 10:30-ish on a Saturday evening. A time when I’d ordinarily be competitively gaming, chatting it up with friends or chilling with a fun show. Instead I find myself typing this news to you from my corner office (the corner of my bedroom, that is).

I’m walking a very fine line between Faith and Fear. In my heart, I know and feel that God is on my side. He will take care of me and provide me with what I need. Here's where the line gets trippy... I remember the agony of all this before. Imagine sitting through a long 3-D movie preview of hell. An interactive preview. Gremlins poke and prod you until you cry, scream or throw up. Your heart and brain are tortured over and over again. Then there’s that clever dark angel who courts you, keeping you awake at all hours. That's just in the first few weeks.
 
I don’t want to re-live this again. Not when I’m just getting my life back together. But I have to. I have to because I choose life over death. And with all the strength and comfort God provides, I will survive. Even though I will struggle.
 
Would you believe that I feel guilty talking about my feelings here? There are so many other people suffering in this world. People who may have it worse and/or may not have the blessings that I have. Loving family and friends. Housing. Plenty of food. Access to medical care. Not a lot of money, but just enough to survive. And so much more. It would probably help if I remembered these things more often. One cannot thrive in darkness. One must live in the light.
 
Just a little scared right now...
 
Faithful readers, thank you for hanging in there and supporting me all these years. Love and hugs!!
 
Jen

Sorry I've been away, guys. Just feeling so blasted exhausted these days; between trying to cope with everything that is happening in/to our Nation and our World, trying to remain calm while dealing with some rather serious Lyme-related complications and well...everything else...! You understand. Perhaps you even empathize...

...empathy is priceless. We all need that.

One day at a time, one step at a time... Prayers for you all. Prayers for our Nation, our World. Stay well, stay safe!

#Healing #Hope #Peace #Wisdom #Courage #Strength #Empathy #Love

• Regular hand washing (more than a quick "splish splash"--20 seconds MINIMUM)...if bar soap or commercial dispenser soap is not available, use an alcohol-based hand sanitizer. You can make your own alcohol-based sanitizer. 

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• Wear a cloth face covering or cloth mask in public spaces; when you're shopping for groceries, at work, taking a walk, etc. Especially if you are high risk, caring for someone who is infected and/or are infected and have to leave the house (for emergencies only). This is to protect you and those you come in contact with.

 

• Practice social distancing. Maintain a 6+ foot distance from people and try to avoid crowds of people, particularly in enclosed spaces. COVID-19 is highly contagious and can be spread in so many ways, including surfaces and the ground you walk on. When coughing and sneezing, do so into the crook of your arm or cover your mouth and nose and immediately wash your hands if you are in an area where you can do so.

 

• Avoid touching your eyes, nose and mouth with unwashed hands.

 

• Use disinfectant and regularly clean your place of residence and workspace, if you have to work onsite. 

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• Regularly clean and disinfect frequently touched surfaces inclusive of but not limited to phones, keyboards, toilets, faucets, sinks, tables, counter tops, light switches, doorknobs, cabinet handles, etc.

 

• Respect your state's quarantine and re-opening instructions. If not for yourself, then for others. When in doubt, self-quarantine. Make good choices in an effort to not contribute to a rise in COVID-19 cases and deaths. Guidelines are meant to protect, not to harm.

    

• When coughing and sneezing, do so into the crook of your arm or cover your mouth and nose and immediately wash your hands if you are in an area where you can do so.

 

• If you've traveled, been exposed to one or more people with COVID-19 or are infected with COVID-19, self-quarantine 12-14 days or as directed by your doctor. 

 

• Get plenty of sleep.

 

• Try avoid/reduce stress.

 

• Telecommute and/or do not take public transportation, if at all possible.

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• PAY ATTENTION TO ANY SYMPTOMS THAT ARISE IN YOURSELF, FAMILY, FRIENDS...EVERYONE YOU COME IN CONTACT WITH. 

 

• If you feel you have contracted COVID-19, CALL your doctor first for recommendations on how to proceed.

 

• Prepare your home and family for COVID-19. This involves creating a household plan of action, establishing an emergency contact list and identify aid organizations in your community; plan ways to care for people in your life that are at a higher risk of getting very sick from this illness such as older adults and people who have serious chronic medical conditions; get extra supplies such as soap, tissues, cleaning supplies, non-perishable food items, and pet food...but don't hoard it; if you or a household member has a chronic condition and regularly take prescription drugs, talk to your doctor, pharmacist, and insurance provider about keeping an emergency supply of medications at home.

 

• Pay attention state and local government developments.

If you already have a confirmed case of COVID-19, the following may help to reduce your chance of spreading the disease to others:

• Quarantine yourself and proceed as specified by your doctor...though it would be wise to quarantine yourself regardless, especially if directed by your state and local government, to decrease the chance of further infection.

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• If you live with one or more other people, self-isolate to one area of your home to prevent the spread of infection.

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• Essentially everything mentioned in the last list​, as well as any other medical instructions you have received.

• Help end childhood hunger in America by donating to NoKidHungry.org.  ​

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• Have you, or someone you know, experienced a hate crime in the coronavirus response, which has especially targeted Asian communities? Report it at http://act.moveon.org/go/119174?t=14&akid=260366%2E40325046%2EN9aqI6, a site developed by Asian Americans Advancing Justice.

 

• Mental health for frontline workers: Low-cost, online services for frontline communities, including health care workers, first responders, and other essential service providers without the option of staying home.

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• Multilingual information on coronavirus: Information is available in 79 languages, including Arabic, Chinese, Hindi, Spanish, American Sign Language, and more.

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• Health care workers needing masks: Use MaskMatch.com to request that folks with spare N95 or surgical masks send them to you.

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• Resources for domestic violence survivors and people experiencing homelessness: National hotlines and community tips for especially vulnerable communities, with resources for both at-risk individuals and the organizations that provide direct services to these communities. People experiencing homelessness should also refer to this website to find a shelter and other resources.

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• Undocumented and seeking health care: A guide to the health care options of undocumented community members. The National Immigration Law Center also created their guide on the rights of undocumented persons seeking health care and navigating private insurance and Medicaid.

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• Artists and members of the gig economy: Find resources, including emergency funding and community care opportunities, on this website.

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• General anxiety support: Get smart tips on managing the financial, emotional, and mental anxiety of this pandemic.

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• Tipped and service industry workers: Ask for financial support from a mutual aid fund set up by One Fair Wage.

• Send equipment to health care workers: Use MaskMatch.com to send spare N95 masks and surgical masks to individual health care workers, or use GetUsPPE.org to see what health care 

• Guide on taking care of disabled and immuno-compromised friends: Notes on equitable care from a chronically ill human in the Seattle area.

• Learn to disrupt racism: This is a skill we all need to have all the time, and developing it now will help address the rising rate of hate crimes against Asian communities we're seeing in response to the coronavirus.

• How to make masks, hand sanitizer: Several clear, step-by-step, practical guides.

• Donate to relief funds: Millions have been hit with joblessness, with vulnerable communities often receiving the hardest hit or being excluded from stimulus efforts. There are countless ways to contribute—like the linked fund to provide rent relief to undocumented communities in Seattle, this Twitter thread of queer/trans artists in the gig economy, or the One Fair Wage relief fund for tipped and service industry workers, a fund to which MoveOn members have already donated more than $100,000.

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• Consider creating your own mutual aid network: Here's a great guide to getting started, with more resources linked, and join the Mutual Aid slack network for more resources and community.

This video details a long-deserving WIN. It is hope for a successful leap forward in both the professional and personal Lyme Community! I'm so proud of my doctor and all that he and his team do for myself, my family and all additional lives that they touch.

Chronic Lyme Disease. Can't say I'm completely grateful to have that. It benched me from the life I had (though I've got a much better life in store for me!). Lyme will always be in lurking around in my system like a Logic Bomb (malware). Even when healed from the worst of it, Chronic Lyme Disease lays dormant waiting for the immune system to flip out. But this particular entry isn't a 101 snippet. Rather, it's related to my most recent post on appreciation.

It's been a long long long road. Chronic Lyme Disease has some excellent right hooks and jabs, but throughout the process, I've become a better, stronger boxer and now thanks to God and JSC, I'm in Maintenance Phase (mild treatment) and not full blown treatment. I've started driving longer distances. Picked up a few random jobs here and there. Am slowly but surely getting back into shape. And yes, I'm still brainstorming ideas for my first book. Progress. 

With an upcoming appointment at JSC, I thought it might be cool to show my doc that I appreciate his continued work. It's a mixed media piece. A watercolor cut into uneven strips placed onto strong white paper. The brain was drawn on green checked paper...look closely and you'll see the meticulous pattern and black, green and gray pen work. Many ways to interpret. Lyme brain. The jail bars of brain fog. The white background of hope for a better future. It was fun to work on...hope Doctor J likes it.

For the larger, more detailed version, please refer to the mixed media page. 

Greetings from the desk of Jen the Zombie!

I have happy news to report! Last week I was given the Golden Ticket of news that all Lyme patients want to hear. I can now enter the hypothetical Chocolate Factory of Remission (for you youngsters, that’s a “Charlie and the Chocolate Factory” reference). Yaaaay!

So what does “remission” mean? Well, it means that Chronic Lyme Disease and its co-infections Babesia and Bartonella are now suppressed. It also means I’d better take care of myself and keep my immunity up because I can’t waste God’s answer to endless prayers of healing. 


To view the entire testimony, please continue reading here.

​On the first day of Christmas, my true love sent to me a wicked case of Chronic Lyme.

On the second day of Christmas, my true love sent me to two co-infections and a wicked case of Chronic Lyme.

On the third day of Christmas, my true love sent to me three helpful doctors, two co-infections and a wicked case of Chronic Lyme.

On the fourth day of Christmas, my true love sent to me four nasty uncoated Flagyl pills, three helpful doctors, two co-infections and a wicked case of Chronic Lyme.

On the fifth day of Christmas, my true love sent to me five fun brain games books, four nasty uncoated Flagyl pills, three helpful doctors, two co-infections and a wicked case of Chronic Lyme.

On the sixth day of Christmas, my true love sent to me six IV treatments, five fun brain games books, four nasty uncoated Flagyl pills, three helpful doctors, two co-infections and a wicked case of Chronic Lyme.

On the seventh day of Christmas, my true love sent to me seven years of sleep-deprived nights, six IV treatments, five fun brain games books, four nasty uncoated Flagyl pills, three helpful doctors, two co-infections and a wicked case of Chronic Lyme.

On the eighth day of Christmas, my true love sent to me eight cheerful friends I never thought I’d have, seven years of sleep-deprived nights, six IV treatments, five fun brain games books, four nasty uncoated Flagyl pills, three helpful doctors, two co-infections and a wicked case of Chronic Lyme.

On the ninth day of Christmas, my true love sent to me nine perfect days, eight cheerful friends I never thought I’d have, seven years of sleep-deprived nights, six IV treatments, five fun brain games books, four nasty uncoated Flagyl pills, three helpful doctors, two co-infections and a wicked case of Chronic Lyme.

On the tenth day of Christmas, my true love sent to me ten missed social gatherings, nine perfect days, eight cheerful friends I never thought I’d have, seven years of sleep-deprived nights, six IV treatments, five fun brain games books, four nasty uncoated Flagyl pills, three helpful doctors, two co-infections and a wicked case of Chronic Lyme.

On the eleventh day of Christmas, my true love sent to me eleven Netflix binges, ten missed social gatherings, nine perfect days, eight cheerful friends I never thought I’d have, seven years of sleep-deprived nights, six IV treatments, five fun brain games books, four nasty uncoated Flagyl pills, three helpful doctors, two co-infections and a wicked case of Chronic Lyme.

​On the twelfth day of Christmas, my true love sent to me twelve expensive supplements, ​eleven Netflix binges, ten missed social gatherings, nine perfect days, eight cheerful friends I never thought I’d have, seven years of sleep-deprived nights, six IV treatments, five fun brain games books, four nasty uncoated Flagyl pills, three helpful doctors, two co-infections and a wicked case of Chronic Lyme.