Hi, friends. I know a lot of you don't hear much from me except some snarky posts and comments here and there and this will probably feel like an information overload, so apologies in advance.

Some of you know that I've had some challenges with my health since I had COVID back in July of 2020. My infection wasn't too bad but when I tried to go back to work, I had to leave early two days in a row due to exhaustion and tachycardia. It was so bad that second day, I almost fell asleep on the freeway driving home. When I couldn't get out of bed the third day, that kicked off a year of medical appointments and multiple rounds of all kinds of tests to try and figure out what was going on.

It turned out I was in the first wave of what eventually got termed as 'Long COVID': a mysterious variety of autoimmune conditions manifesting in COVID patients long after their COVID infections had ended. An immunologist was able to diagnose me with an autoimmune disease showing up in a lot of former COVID patients called Mast Cell Activation Syndrome which causes severe allergic-type reactions to different triggers. This explained a lot of my symptoms (hives, swelling, severe gastro-intestinal distress), but not everything.

Eventually, I was able to be seen by a clinic that had set up a Long COVID treatment and research center (the Bateman Horne Center in Salt Lake City, Utah) and was finally diagnosed with a mild form of a circulatory condition called POTS (which explained the weird behavior of my healthy heart), and ME/CFS, commonly known as Chronic Fatigue Syndrome. In addition to the overall fatigue, CFS comes with decreased congnitive function we call 'brain fog' and Post Exertional Malaise (PEM). This is the crash that happens after exertion (physical or mental), making the already bad fatigue and brain fog even worse for hours or sometimes days. In fact, it's taken me almost a week to write this out because mental exertion is now as draining as physical exertion and triggers my brain fog, making it hard to generate writing that I feel comfortable sharing.

Fortunately, I've been able to get better at managing how I manage my energy expenditures, so I can minimize the PEM and crashes. Even then, I don't really know how each day is going to go until I wake up in the morning and listen to what my body is telling me. Some mornings I'll know I'll be able to go to the store and maybe cook a meal. Other days, I know I'll have to save my energy just to take a shower and make my bed.

Unfortunately, ME/CFS and PEM aren't well understood in the medical community. The symptoms can vary so widely and current medical testing is not able to fully capture what ME/CFS and especially PEM are causing in the body, making it difficult to be taken seriously by providers and to get treatment. In fact, for decades these conditions have been dismissed and seen as 'made up' by patients. This is especially true because the vast majority of ME/CFS patients historically are women, who have a history of being discounted by the medical establishment in the US. Some progess has been made in recent years with the explosion of ME/CFS cases due to Long COVID, but there is a long way to go.

At this point in my treatment, I am needing to get documentation of the effect PEM is having on me so my providers can have more data to formulate treatment strategies. I also need to be able to show that my ability to function has drastically decreased as I am still navigating the disability application process. To this end, my providers have referred me to the Workwell Foundation, which has developed a 2-Day testing protocol which provides objective observations of the physical and mental effects of PEM in patients. You can find information on the protocol here:

https://workwellfoundation.org/testing-for-disability/

I was excited to learn about this opportunity to get objective evidence of my condition, but in the US, this type of specialized, intensive testing is expensive and in my case without private insurance, must be paid for out of pocket. The advice I've been given is that these tests are necessary to support my disability claim in addition to furthering my treatment.

As you'd probably suspect, and as some of you know, the practical result of Long COVID for me is that the unpredictable nature and severity of my symptoms day-to-day, in addition to the overall reduction in my physical and mental stamina, has made it impossible to stay employed or even find regular freelance work for nearly four years. My attempts to expand my skills to do other types of more flexible work have also fallen short due to the fatigue and brain fog. After so long and even with all the generosity I've been shown, I'm pretty much at the end of my resources to get this testing done on my own and am very humbly asking my friends for your help.

The cost for the two days of testing is $3,400. Additionally, travel expenses from my home to Santa Rosa, CA I've estimated at $1,200. Because the test is designed to induce a PEM crash, I'll have to stay in Santa Rosa for a few days to recover before I can travel home. Any remaining funds would be used to cover my existing balance at the Bateman Horne Center. All expenditures will be itemized and made available for review. I've set the goal at $4,700 to help cover transaction fees.

If you've made it this far, thank you so much for listening to my experience. At the very least, I hope I've been able to provide some perspective and new information for you to consider and share. I'm just hoping to be able to exist in the world without being too much of a burden on anyone, while I do what I can to give back and work to continue my recovery. I'm so grateful for all of you and appreciate so much all the support I've been given these past few years. Thank you!

More info and resources on ME/CFS and the work being done at the Bateman Horne Center can be found here:

https://batemanhornecenter.org/providers/mecfs/

*Pic of me and my daily meds bundle of joy