Thank you so much if you take your time to read everything. I try to keep things updated but you can always find my most recent updates on Instagram. At the very bottom you’ll find screenshots from my patient portal right before and when I was diagnosed with hEDS since I wasn’t given actual paperwork after the appts.

 

My name is Lily, I’m a chronically ill and disabled 21 year old artist. We started this gofundme when I was 19. I’ve been married to my husband since September of 2020, he is my caretaker as I am becoming unable to independently care for myself. He also struggles with his health but we do our best to stay afloat. The past few years (2020-2023) have felt like a fever dream and sort of all merge together sometimes, it can be quite hard to remember/ explain everything going on at once. Despite the help from the family members that can offer it, and working my absolute hardest to run my ko-fi, I do often need additional support. Since April of 2021 my health began a rapid downhill decline, due to medical neglect I wasn’t receiving the care I needed so it began causing permanent damage. I have had health issues my entire life and got sick all the time but not to this extent. I was formally/ officially diagnosed by a geneticist with hypermobile Ehlers-Danlos Syndrome (hEDS). After recently reviewing my records it was in June 2022 that it was “official”, after months of doctors suspecting connective tissue disorder/ EDS and telling me “it seems like EDS so we will treat it like that until proven otherwise”. but my current (end of 2023) team of doctors found out that the testing performed was not the full EDS panel like I was originally told so I am on a waitlist to see a new geneticist for further examination and testing to absolutely confirm the subtype. I also have many other diagnosed conditions like heart failure, seizures, dysautonomia (previously diagnosed with POTS but I was recently told by a cardiologist that is only diagnosed if there isn’t a direct cause of dysautonomia), esophageal & GI issues causing malabsorption and malnutrition, and more that severely affect my daily life. At the very bottom of this page there will be a pretty extensive symptom list if you would like to see more details.

 

All proceeds from this fundraiser go towards my medical expenses and other necessities such as:

-Accessible technology/ devices

-Medical equipment

-Medical bills (dr visits, medications, labs, scans, and other things not always covered by insurance if my doctor/ specialist is not in network)

-Rent/Food/Living Needs due to inability to work. As of 2023 we no longer pay rent since we live with family, but our car payment is $650, car insurance $245, phone bill $80, Internet $70, and gas is astronomically expensive and we need to pay for gas to get to my appointments and drop off shop packages.

 

Here’s some info before we get started:

EDS= Ehlers-Danlos Syndromes which is a group of connective tissue disorders that effect the collagen structure/ function that effects each person differently. For some more info check this link: EDS info

 

POTS= Postural Orthostatic Tachycardia Syndrome

for some more info check this link: POTS info

 

Backstory:

 

As a child I would constantly sprain and fracture things with minimal effort, I would bruise super easily, my wounds would take a while to heal, and I was constantly in pain. I never realized this was abnormal due to the fact my dad, grandfather and the pediatric doctor didn't take me seriously and everyone treated me like I was doing it for attention or just "it wasn't that bad".

 

I went undiagnosed for a long time (18 years), everything was always chalked up to "just being a kid" even though I would frequently get sick and when no one else was and would frequently get injured. No testing or thorough examination was actually done.

 

When I was very young, I received my first flu shot, I had a horrible reaction to the shot. I was bedridden for days with a fever of over 102 degrees Fahrenheit. I couldn't keep anything down, I would constantly projectile vomit. I was exhausted but at least I remember someone giving me an adorable hello kitty ice pack that truly didn't do anything but the ice-cold felt amazing.

 

When I was in 3rd or 4th grade, I fell off of the monkey bars at school directly flat on my back. It hurt so bad that my dad took me to the ER, where they found nothing on the x-ray and told me I was fine. I definitely did not feel fine, and this just more convinced my father that I was just doing it for attention, when in actuality I was in so much pain.

 

I cheered for probably a decade (up until I turned 13), it's all I really remember from my childhood. I would constantly sprain, fracture, or injure myself in unknown ways out of nowhere. The worst was my ankles and wrists, I lost count of how many times I sprained and hurt them. It was super painful but I tried to hide this fact since my father convinced me it was all in my head. One rainy night we were running laps at cheer practice as we always did regardless of the weather. I slipped on mud and fell directly on my tailbone which was immensely painful, I could barely get up and even stand. My father was a football coach practicing in the same field so they called him over and he took me to the ER, where I was yet again told it was simply nothing. How could something so painful just be "nothing"? So I just continued on, since no one wanted to listen to me. At a physical for one of the last years I cheered, I was actually told I had scoliosis and that I needed to watch it.

 

I actually took a break from cheer for a while I did football and gymnastics. The time I spent playing football was only a few months as I refused to keep going just due to how much pain it caused me. I didn't tell anyone this since I was never listened to before, I didn't think anyone even cared. So to everyone else, I quit "just because". Also while practicing with my father, he passed the football to me, and for some reason this time I fractured my middle finger. I wore a splint for a while on it.

In gymnastics, I quickly found out how flexible I was, I quickly caught onto everything and was able to achieve the splits rather quickly compared to the other girls the same age in my class. I got into the best shape of my life but it was extremely painful, but not just the muscle soreness. The coaches were pretty harsh and at this point, I just believed I was supposed to be in pain all the time. 

 

In 6th grade, I signed up for track (convinced by my friends) the practices were physically rough on my body, and for some unknown reason, the coach was very adamant about me doing the longest race. I kept telling her I didn't want to do it and I couldn't handle it, but she said I had to do it or I wouldn't be able to be on the track team at all. During our first meet of the season, it was finally my turn to run so I went out on the track and ran as much as I physically could. Everyone was cheering for me, but no one knew that I couldn't see anything at all. My vision was black, I could barely breathe, I couldn't feel my legs just after a few steps. I wanted to give up so bad but I was in second place so I just kept going. Afterward, I realized I severely sprained my ankle, which put me out for the rest of the season. 

 

I would constantly bring these issues up with my father, and he would just brush them off. My pediatrician would also tell me I'm just fine without even performing any tests or etc. For example, she told me nothing was wrong when my more severe GI issues began in 2015. I requested a referral to a GI doctor, he tested me for food allergies and found I was allergic to wheat, milk, peanuts, and shrimp. When I got my blood drawn, they didn't take a lot and I waited for 10 minutes while drinking a juice. I felt fine so we went to leave, as soon as my father and I stepped out of the clinic and the sunlight hit me, my vision went completely black and I couldn't move. The next thing I know he's carrying me back to the car, I fainted over 10 minutes after having a small amount of blood drawn. This would continue even after elimination of those allergens, I still had problems and the GI diagnosed me with IBS. He prescribed me a medication that was supposed to turn the acid in my stomach neutral. It "worked" for maybe a month but I was still severely in pain and couldn't eat anything without it hurting me. He then had me do a colonoscopy and endoscopy in one procedure to check for any ulcers that could be causing issues but there were none. They took tons of tiny biopsies all down my intestines and esophagus to see if there were any abnormalities, nothing came back from those. He had mentioned something that did mildly concern him when doing the procedure, my bowels did not properly or completely empty as they should have and there was excess bile in the stomach which could indicate something more at play. Additionally, he mentioned the opening to my small intestine was a lot smaller than average.

 

During my Sophomore year of high school, I "crushed my pinky toe like a tin can" as the doctor stated. I was attempting to scoot a cat out of my bedroom and my foot tapped against the door. It immediately swelled up, I couldn't move it and it hurt so bad, I was crying my eyes out from the pain. I tried telling my grandpa and father about it but they told me there was no way I broke it or injured myself. I ended up waiting for my mom to be able to take me to get an x-ray, then I was given a boot to wear for a few months. 

 

As I've gotten older, I began realizing that none of the issues I had were normal. For example, your joints don't usually slide around in their sockets, partially and sometimes fully dislocating, you shouldn't be having so many muscle spasms that were so painful. It causes me to have weakness in my legs at random times, as well as all of the symptoms from dysautonomia, which were all issues I've had my entire life but never thought it was a problem since no one else seemed to think so.

 

When I turned 18 in 2020, I began seeking medical help for myself as my father hadn't truly been in my life for about 5 years I was no longer using his insurance since he used these things to control me.

 

I was unable to get insurance until June of 2021 through Medi-Cal, I was finally able to see a doctor who honestly did not really even try in my opinion. I brought her all my concerns regarding my joints, pain levels, blood pressure levels (that I was told to record), and heart rate issues. She ran some basic tests and told me I was fine. On June 13th at 12:52 pm, I needed to go to the ER for shortness of breath, very heightened blood pressure & heart rate, leg weakness, and a few other things. As soon as I arrived they gave me a wheelchair which was amazing. About 10 mins later they took my blood pressure and heart rate reading which came out to 159/92 with a 152BMP, and the woman who took it didn't believe it since I had been sitting down for a while now, so she retook it twice and it came back the same. I was quickly transported to an EKG machine where they wanted to completely make sure nothing was immediately wrong in that area, it came back fine so I was finally taken to my own room where they continued to monitor my BP and pulse. At 3 pm it was read at 138/67 which was very odd so they continued to monitor. It was then they decided to put in an IV of some medication to help relax my body and help with the pain. I waited for a few hours to see the ER doctor, who told me it sounded a lot like dysautonomia. He told me “be careful as a lot of doctors do not even believe in it as there is no specific test.” He wasn't able to make an official diagnosis of dysautonomia since he was wary of my current doctor but he was able to diagnose me with sinus tachycardia and chronic lightheadedness and gave an amazing written report which eventually led to helping me get my dysautonomia diagnosis.

 

Per her request I journaled logs of my daily symptoms along with information on dysautonomia and brought them to her again. The entire appointment she did not really know what to think until SHE ASKED ME what I thought was wrong with me... So I showed her the research on dysautonomia compared to my symptoms as well as the event at the ER, and asked her if it was possible that I have dysautonomia? which she decided to look at everything and She says "oh! that definitely seems like that's the problem, so I'm diagnosing you with POTS".

 

I still obviously had many issues with my joints and constant pain in my body so I brought them up at another appointment. She wasn't too sure where to start so her main concern was my uterus and the severe period pain I was having so I got referred to a gynecologist. In my first session with her, she did some swabs and took a urine sample to check for anything there. When nothing came back, she scheduled a transvaginal ultrasound. When I got the results back, I was told I had two cysts on my right ovary. Both of which were 4cm or bigger, my primary doctor didn't seem concerned at all but the gynecologist told me to keep an eye out and try to get more frequent scannings to see if they get bigger or more appear.

 

When bringing my entire body pain back up to my doctor as well as reminding her that during a physical for cheer when I was younger I was told I had scoliosis, she sent me to a physical therapist. The PT was okay, I don't think he even knew why I was sent there. When he asked where my pain was and I began naming everything off (which included my entire body) he stopped for a minute then said we would just start with my neck and move on from there. I hesitantly agreed because what else could he do? He gave me three stretches for my neck, which eventually ended up actually straining my neck and made me feel worse, I was moving out of state in July for more support so I ended up just canceling the 2 appointments I had with him as he was just lost.

 

She eventually scheduled a back x-ray for me to check my scoliosis, what returned from that was a diagnosis of s-shaped scoliosis in my thoracolumbar spine. The top part of the S is from T6 to T12, and the bottom part of the S was from L1 to L4. In my medical records, she records more than 5 times I mentioned to her my limbs and joints were over-extending and she was leaning towards EDS (Ehlers-danlos syndromes) there was not enough time for me to see her more and get genetic testing done, we had to move for financial reasons before I could receive more official diagnosis/ testing.

 

I currently have a few mobility aids that I rely on: my main one is my custom power wheelchair, second is my custom manual wheelchair, and when symptoms allow my forearm crutches for short distances.

 

This is of course not every single incident I had nor all of my symptoms and complications. This is just a peek into my medical life to help spread awareness and help you understand me better.

 

Recent updates:

 

9/20/21 September Update:

I was able to finally get my new license and was able to re-apply for Medicaid again about two weeks ago and I still haven't heard back from them yet. I really need to see some doctors soon, I started monitoring my blood sugar and it has been severely fluctuating no matter what I do. My highest so far was 231 and my lowest was 44, both of which happened in the same day. Every single day I have pretty bad swings up and down which makes me feel terrible, could possibly be one of the main reasons I feel so bad all the time. My a1c levels have stayed normal as always but it doesn't eliminate the fact I may have a something else going on like a metabolic disorder. 

 

My fingers feel raw from all the pokes I have to do, even using the smallest gauge. I hope I can see someone soon and get some more answers, things just keep making less and less sense to me.

 

 

11/11/21 November Update:

New symptoms include:

-severe jaw pain on left side 

-severe ear/ neck pain on left side

-loss of hearing on left side

I had a pretty bad flare up of these symptoms from 11/5 to 11/9 it would wake me up in the middle of sleeping it was so bad. I kept crying from how bad I hurt but I still have no insurance so I want able to get it checked on.

Unfortunately I believe it has to do with some nerve damage or connection issues from EDS so I’m not even sure how they could check or fix it. 

 

11/15/21 Novemeber Update: 

I suddenly got a really bad constant pain in my left hand, upon further research and speaking to the doctors, I have a pinched ulnar nerve. I can barely move my pinky and ring finger without immense pain and absolutely nothing is helping. I've been wearing a wrist brace for the time being to try and help but I need to see a pain management specialist ASAP. It keeps waking me up whenever I sleep and I can't stand it for much longer.

 

12/02/21 December Update:

I haven't done an update in a bit but here is what happened over the past few weeks:

-I was able to get into a low-cost clinic and qualify for sliding scale fees.

-The doctor is the nicest man ever and completely believes me and wants to do everything he can to help me. He seems very well educated and knowledgeable and mentioned EDS as well so his first referral was for a geneticist.

-I was prescribed a few medications but turned out to be allergic to the anti-inflammatory Ketorolac.

-I received a referral for an orthopedist but paying out of pocket is starting at $300 before I even see the doctor.

-I have an abdominal ultrasound scheduled for tomorrow Dec 3rd due to some very concerning GI issues.

-We decided to not start any new meds until I am able to see the ortho and see what they think. So I'm out of luck for pain management right now.

-I got my disabled parking placard form signed! So excited to be able to go to the store again since walking through the parking lot is really hard.

 

I will try to remember to update once I get results from my scan and if anything else changes :)

 

1/9/2022 Jan Update (so far):

-my ultrasound didn’t come back with anything BUT I was sent in for a CT scan.
-I received the results the next day.

-The CT scan showed my cecum is abnormally narrow (6.3 cm in diameter), and the rest of my colon is distended. I also still have my ovarian cyst from almost 6 months ago and it has not gotten smaller. Also confirmed that my lumbar scoliosis has gotten worse.

 

2/6/2022 Feb update:

I haven’t been unless to update in a little while but let me try to give you a run down of what’s going on.

-I have my geneticist appt on Feb 10th! 

-I have to see a GI becuase my doctor is worried I may have gastroparesis.

-I’ve only been able to eat maybe 1000 cals a day but I’m not losing weight so they aren’t hugely concerned about it right now until I can see the GI.

-I got a new referral to rheumatology since orthopedic doctors say they can’t help me.

-I’ll be seeing a cardiologist and OBGYN soon.

-My doc is now worried that the cyst I’ve have for around 6 months, may be a tumor or cancer so I’m seeing the OBGYN to hopefully get it removed/ biopsied at least

-My symptoms haven’t been the best and I just miss eating.

-I’ve tried a few different meal replacement drinks but I’m allergic/ can’t tolerate every one that I try so again gotta wait on the GI for that.

 

3/1/2022 update so far:

-Saw the obgyn on Feb 11th, she was concerned about the cyst I’ve had for awhile, so she ordered tumor/cancer marker labs and another ultrasound to check. One of the labs came back abnormal but she doesn’t want to say anything until I get the ultrasound done tomorrow. She also said I likely have endometriosis so we will see if she can biopsy.

-Talked to the geneticist via zoom call on Feb 14th due to COVID issues. She said it definitely sounds like Ehlers-Danlos Syndrome so I am going in on March 7th for a thorough physical examination and to start the process for genetic testing!

 -Saw my PCP on Feb 17th and he said there’s not much else he can do for me and that I need to see the specialists, he prescribed me a antihistamine to try and help me sleep but they made me feel worse and I was uncontrollably sweating. 

-Went to the cardiologist on Feb 22nd and he said there isn’t much they can do for POTS/dysautonomia but we will see what happens. We are testing out some medication, he gave me Midodrine that I unfortunately had a bad reaction to and almost needed to go to the ER, so waiting to figure out a new medication to try. I’m getting an echocardiogram on the 3rd to look at my heart, he said we might do them pretty frequently to keep tabs on if the connective tissue disorder is effecting my heart.

Another March Update!

-Did my echocardiogram on March 3rd, 3 out of 4 of my heart values are regurgitating so that may be causing some of my symptoms but it’s not bad enough for any sort of procedures.

-On March 4th I went to the ER for extreme pelvic pain. First they gave me an oxycodone pill and some anti-nausea. I ended up being allergic to the oxycodone as my throat began closing up causing me to wheeze. I could barely breathe and I was terrified, I was crying out for the nurses and they finally were able to get morphine through my IV (which is not at all what I needed). It only helped with my throat, but she gave me another anti-nausea antihistamine through my IV along with another narcotic that I don’t remember. I was still in pain so they tried another one along with a steroid shot for the migraine I now had. They ended up sending me home because the ER doc didn’t want me there and didn’t want to actually help. I was more sick and in pain than when I came and was vomiting/ dry heaving for hours afterwards and couldn’t even walk on my own. It took me well over 4 days to recover

-Saw the geneticist on March 7th for a physical exam and to talk about genetic testing. She said I might have Ehlers-Danlos Type III but it’s possible it’s a different type since they overlap often, but she has ordered a full connective tissue disorder panel for genetic testing just to see if anything comes up. (Edit/update: she lied about it being a full panel testing) The testing will be $100 and take around a month to get the results once I get called in for the labs. She also gave my doctor recommendations of getting me on aqua therapy, to see a pain specialist, and to find a surgeon for a central line since I have horrible reactions to oral medications & need extra support for POTS. 

 

-On March 9th I had my nexplanon removed and it was a very traumatic experience. None of the numbing worked and they gave me two shots. I could feel everything including the sharp scissors cutting the tissue off of the nexplanon. It took forever and even the next day my entire arm is throbbing in pain and spasming. The area right around the incision is extremely sensitive and keeps spasming causing me to bleed more. I’m just glad I finally have it out after 2 years, I definitely think it made my EDS/POTS worse but I’m not really sure. I got it before I even knew about EDS. Never doing birth control again ugh. 

 

Sorry if it’s a little messy/not organized but I’ll try to fix it once I feel a bit better. Thanks for coming along with me so far

 

Here is a rough list of symptoms I deal with on a daily basis since it’s hard to keep up with everything I experience, all of these have been happening for many years at this and some happen randomly throughout the day even when sleeping/ trying to sleep along with many happening all at once.

Starting at the head:

• Chronic Headaches

• Constant neck pain, muscle tension, neck subluxations, head & face jerking/muscle

spasms, and electric feeling pain

• Stabbing sharp pain in the very back of my head followed by sight loss for a couple of

seconds

• Jaw pain when and even when not eating, jaw clicking, jaw locking

• Inner ear pain, hearing loss, and ringing in ears without ear infection

• Frequent Eye, Ear, and Sinus infections

• Itchy throat, loss of voice, trouble swallowing and often feel like something is stuck

and is very painful to swallow

More towards the shoulder area:

• Trapezius muscle pain, spasms, and tension

• Shoulder joint subluxations, joint pain, muscle spasms, clicking/popping, and a

burning-tingling numbness in left shoulder blade

• Muscle spasms on rib right under armpit.

• Electric shock pain and painful popping in elbows

• Entire arm muscle spasms

• Wrist subluxations, constantly feeling out of place, weakness, and painful popping/

grinding feeling

• Chronic pinched ulnar nerve, includes the ulnar nerve feeling tight and painful (can’t open pinky & ring finger, tingling and numbness in entire arm.)

Moving to the lower area of the body:

• Abdominal muscle spasms

• Feeling like bottom ribs are stabbing me, hard to breathe, sometimes feels like a

“bubble that needs to pop” in middle ribs and I have to breathe really hard in and it

pops then is sore.

• Spine feeling out of place and stuck, with intense pain.

• Back muscle tension and spasms, entire back going numb for 10-15 mins

• Legs going limp, numbness, weakness, pins & needles feeling randomly, muscle

spasms especially in calves and near knees.

• Knee joint pain, swelling, popping, subluxations, knees are severely uncomfortable

to sit or lay in any position (gets bruises from my own knees when sleeping on the

side)

• Ankle muscle spasms, joint pain, subluxations, and electric shocking pain

• Foot muscle tension, cramping, and pain

Reproductive System/ Pelvic Issues:

• Chronic UTIs

• Butt muscles spasms

• Stabbing pain in rectum, uterus, and vaginal canal even when not on period

• Hip subluxations, pain, popping, and burning feeling

• Trouble emptying bladder/ trouble going pee

• Ovarian cyst draining (bleeding outside of period cycle that is lighter and pink/

orange)

• Ovarian cyst causes period-like pain when not in cycle

• Severe period pain, prevents me from moving

Internal issues

• Weight loss

• Hypoglycemia issues

• Random itching and sometimes random rashes on different body parts

• Temperature regulation issues (hands and feet always freezing cold to the touch)

• Dysautonomia & Heart Failure Complications:

-Tachycardia

-Hypertension

-Shortness of breath

-Exercise intolerance

-Poor balance

Digestive Issues:

• Constant waves of nausea

• Severe abdominal pain in multiple areas/ tons of very loud & weird noises coming

from my stomach as well as muscle spasms that move my whole abdomen

• Pain worse when eating/ for hours after eating

• Chunks of food come back up right after eating

• Acid reflux after eating/drinking anything

• Usually constipated, but diarrhea sometimes+ severe nausea

• going #2 usually about 1 time ever other week and is very painful/little amounts

• feeling full fast when eating

• not hungry often

• barely able to eat

Others:

• both epileptic and non epileptic seizures

• episodes of paralysis

below are screenshots from my patient portal for two of my genetic appointments regarding hEDS since I wasn’t given paperwork versions :) please remember this was early 2022, not everything was properly documented and I was not completely fully EDS tested as I was originally told, a lot has advanced/ changed since then which is why my doctors are having me get a reevaluation/ actual full diagnostic panel. Additionally this geneticist told me that I should be reevaluated/ examined on a yearly basis by a geneticist educated on EDS.