UPDATE FOR FEBRUARY:

The goal has been updated to reflect the new goal for February of $3,100. This also includes the percentage that gofundme takes out (assuming that all donations are through this platform). This is why the goal now reads as $6,600 - it is January and February combined, as well as what gofundme takes out. If I put it as $3,100 now, it would say that the goal is met. If it goes over goal, that could bring relief to March.

The reason I'm doing this is that I have not yet found new work that is accessible to me with everything going on health wise.

My goal here is to ensure that there is enough time for this fundraiser to meet its new goal as well as to let me continue to look for work in the meantime. I have also set up an amazon list of some items that help with accessibility/hygiene/basic needs.

Donations can also be sent via Venmo or CashApp. My username on both is secretladyspider . They are added on here as "offline donations".

My health is doing a little bit better recently? I'm cautious to say that I'm feeling better, it feels a bit like putting myself under a curse. I have figured out that electrolytes do help, but only if I take an absurd amount by the standards of a person who isn't feeling like this/is healthy.

Unfortunately I still don't actually have any concrete answers. The second blood test where we tested things like my vitamin D and B12 came back normal. On the low side of normal, but... normal. I think the D was 1 point below normal levels. The test for Lyme came back bordering between negative and inconclusive. But, Lyme testing presents a lot of issues. Really the name "chronic Lyme disease" or even "post treatment Lyme disease" is a misnomer. What happens in some Lyme patients is that after infection symptoms like fatigue and muscle pain may not go away and appear much like fibromyalgia or ME/CFS, two health issues that most doctors also don't understand. But with Lyme, the biggest problem is there isn't a consensus yet on why these symptoms can linger in some people. They don't agree yet on if the Lyme bacterium is actually staying hidden in patients' bodies, or if the infection creates an exaggerated immune response, or if it triggers autoimmune disorders, for example. Lyme disease has been called "the new great imitator", after its cousin, syphilis. It can look like so many different things and not be tested for. That's also where the next problem with diagnosis comes in.

Lyme disease testing still relies on a bacterium which was cultivated in the 1980s and was not taken from a human patient, but rather from a tick itself. Since then, there have been over 112 more strains of the main bacteria which causes the infection we know as acute Lyme discovered in America alone. As of November of last year, 2023, the CDC finally acknowledged that Lyme disease can be a trigger for ongoing, unexplained fatigue and other symptoms, including but not limited to post exertional malaise, one of the trademark symptoms of ME/CFS. Still, though, most doctors haven't received the memo, and if you're only testing for the antibodies for one strain of a bacteria which has since evolved many more strains... I think it's easy to see why false negatives can and often do happen, or why concerns about the possibility of Lyme are often completely dismissed.

Lyme is also a common trigger for dysautonomia. While I have not yet received a diagnosis for dysautonomia, I have too many symptoms and respond to the ways its supposed to help too well to not notice an overlap. Whether or not I have or have ever had Lyme, the dysautonomia is definitely part of what's happening. The hard part is getting a doctor to recognize that.

I have a sleep study coming up soon, but, given that my symptoms started long before COVID... It's definitely something I've been looking into. I have not been looking into "Lyme literate MDs", or LLMDs. This is because none of them take insurance. A large reason for this is that since the CDC has only recently even recognized that Lyme can cause ongoing problems, there is no billing code or way to bill insurance for it in many cases. Also, many people say that the whole thing is a scam, and there are definitely people I wouldn't put that past. The whole thing is a mess. Even if it was all certified and legitimate in all cases, and no scammers existed, I am not shelling out thousands of dollars I don't have to be evaluated for a condition I only might have had that caused long lasting after effects.

In any case: electrolyte supplementation and putting a folding chair in the shower have been very helpful. I also tried some cheap compression socks and I don't know if it was placebo, but I noticed I was able to sit up longer than I normally am. I may need to add some better compression socks to the list at some point. What would be better if if the job I'm applying for today hired me, and I could get my own from a medical supply store. We will see. Fingers crossed. I am also going to try to supplement vitamins through diet first. I'm afraid if I take any more supplements my already tender stomach won't be able to handle it.

Thank you everyone for all your help getting through January. I hope that I can count on you again this February. Please give this a share, if nothing else. I hope you have a good February that reduces your stressors and makes you feel like you can take on anything life throws at you.

-Elle

SEE BELOW FOR MY STORY:

Hello there, I'm Elle. I am a queer, ace, disabled nonbinary person with ADHD, depression, and two cats. And I need help to not become homeless.

 I have a long story, but I felt it was important to be as detailed as possible. I hope you’ll take the time to give it a read, a share, and hopefully, contribute to my gofundme so that I don’t become homeless.

 I’ve been homeless once, and it was undoubtedly one of the most traumatic experiences of my life. I have no desire to repeat the experience.

 Here is my story, or, how I got here.

In November, I lost my job without warning. I have no savings as the job already had me living to the last dollar of every paycheck.

 I cannot work away from home, a physical job, or something with strict hours due to some yet-to-be-diagnosed illness.

 I was denied unemployment benefits because, as the job was contract and the company had not filed for unemployment insurance, I did not have taxes taken out when I was paid that could go towards unemployment. I was also denied food stamps for the same reason.

 Because whatever is going on with my body is undiagnosed, I cannot even apply for disability benefits (a process that usually takes a few years to be approved, if you ever are).

 I don’t actually know what’s going on with my body. I’ve been to quite a few doctors trying to figure it out. I’ve had periods where I felt a lot better, but they never last, and I don’t know how I got there or how to get back on purpose.

 In early 2018, I was doing regular walk/runs.

 In 2019, I stopped being able to run, so I went on walks.

In 2020, I kept going on walks and tried to do aerobics.

 In 2021, it started to take more time to recover from walks.

Then I started to need to take a nap immediately after I clocked out from work— and it was a work from home job.

 In 2022, I began to go from my sitting desk job straight to my bed most days, laying down exhausted right after work, even sleeping through lunch to get some rest.

 On New Year’s Eve 2023, I spent 30 minutes cleaning, including vacuuming my living room. I had to rest the rest of the day.

In the last five years, I’ve gone from running to being exhausted for hours by taking my garbage to the curb.

 There are other symptoms also. More vulnerability to infection and more trouble fighting infection. Shooting, sharp muscle pains in large muscles such as the thigh or forearm, like a pinched nerve, that come and go at random. Pulse rate that skyrockets upon standing, to go back to normal soon after. Stomach inflammation. Inflammation without major swelling. Headaches. Complete inability to tolerate heat, leading to excruciating migraines that only go away with things like cold showers, electrolytes, and hours of rest in the dark with ice. Muscles that literally don’t feel like they’re getting oxygen. Random rashes. Face flushing. Being much more easily out of breath, yawning over and over, like I can’t get air correctly. Weight gain, no matter what I eat or don’t eat. Increased sensitivity to the environment.

And just being so, so tired, to the point where I’m tired of being tired.

In summer of 2018, it started to get bad. I felt very sick all the time. I had a low grade, unexplainable fever nearly every day. Shooting nerve pain would wake me up at night, or I would be unable to sleep. I never felt fully rested. It felt like I had a low grade flu, but only parts of it. And I wasn’t getting better.

 When I went to get checked, I was told I had a cold.

When it didn’t stop, but my standard blood work and thyroid hormone level was normal, I was referred to a rheumatologist.

I was diagnosed with fibromyalgia after he made me wait 45 minutes, came in and asked “are you tired?”, poked me very hard in a few spots, said I was tender, and left without running tests.

 I see a psych nurse. She thinks there’s more than just depression, ADHD, and other things — though we both agree that managing those is vital too. She used to be a cardiologist, so this is reassuring.

But when I have tried to see other doctors, it goes differently. Most of the time they see I have ADHD, a long history of depression, and hypermobile joints, and say that explains everything. I can’t count how many times I’ve been told “well, you have depression,” as if that explains everything going on.

My standard blood work sometimes comes back with anemia, but I take an iron supplement. No improvement had come of it. I’ve had my thyroid hormone levels tested over and over, but never the antibodies. No imaging or referrals have happened, outside of one to a second rheumatologist. He ran no tests either; he just saw my joints are hypermobile and I was “sure taking a lot of mental health medications” (two at the time), and that was that.

 Because of this, I’m trying to figure out how to either work for myself or find a work from home job that has flexible hours I can choose. I literally wouldn’t be able to work a retail gig where I have to stand for eight hours, or even a 9-5 where I have to be there for those exact hours, because my body cannot do that right now.

I want to get better but it’s a long way off. First I need to know what’s even wrong. I’m praying for a diagnosis soon. 

 I do not have a partner who can try to support me through this, and my family already supports me however they can.

 My severance (which was low as I found out I was being paid much less than the rest of the team later) paid for my January rent.

There is nothing left in my bank account. No money for rent, or utilities, or food, or gas, or hygiene, or cat food, or supplements, or the car payment, or… anything.

Since my ability to work is severely limited right now, and I’ve been denied unemployment and food stamps, I am left with nothing without help. Without this help, this gofundme… I have nothing.

 So… here I am. A queer nonbinary disabled neurodivergent writer, trying my best, living with some undiagnosed illness that’s severely impacted my ability to function, who got fired without real reasons, asking for your help to pay my February rent and January bills.

 I’m hoping beyond hope that this meets goal. I’m hoping beyond that it doesn’t just meet the goal; I’m praying for a miracle. For safety. To be able to breathe and not be homeless or get worse. It would mean for the first time in my adult life, I could focus on getting better and making a life for myself that’s accessible for me.

If such a miracle happened… I would have time. I could figure this all out. I would have the resources I need to rest and learn what’s going on and get well. I would have the resources I need to try and figure out how to work for myself, what that looks like for me. I could rest. I could breathe. I could get well. For the first time in years… I could get well. Or, as close to it ad I’m able with what’s going on. 

 Thank you for reading all of this. I really appreciate it. Remember, no donation is too small— they add up. If just 100 people gave $35, the goal would be met. If you can’t give monetarily, remember that sharing is also giving— it means someone who can help is more likely to see it.

Thank you for your kindness, generosity, and support.