I’m writing a book about the medical research I did throughout my health journey. I’m being pretty transparent about my story, which is kind of uncomfortable and embarrassing for me. I know if I’m honest and revealing, then i’ll help more people.  So, this is my basic health history:

5 (1980)- Fell face first on monkey bars & I got a CSF leak from craniofacial trauma.  (I didn’t realize that until later in life) 2 black eyes. 0 medical attention

9-10- Had mystery illness for a year (headaches & stomach aches & nausea/vomiting & fatigue)

14: Got mono ( EBV- Epstein Barr Virus)

18-21: Had SINUITIS every year I was in college. Sometimes, I had it more than once a year.(NOTE: I didn’t realize I was falling asleep in many of my classes because I was sick. I just thought I lacked self-control and needed to focus harder. I didn’t tell anyone because I was embarrassed & I thought my parents might shame me for wasting their money so I just kept it quiet & tried harder.

In retrospect, that was a silly perspective. But, I had a hard time seeing myself as sick because (starting at 9) doctors told my parents that my pains were just in my head. So, often when I told my parents I was sick, they would tell me no I wasn’t and I just needed to toughen up.

At the age, I thought they might be right. I worried maybe I was just a whiny complainer. I didn’t want to be that. So I talked to myself like they talked to me- just denying my aches & pains & shaming myself to toughen up. I felt sad & sick a lot, and I didn’t look into it because my doctors & my family told me I wasn’t sick. What would I even research?

24: EBV returns-(I didn’t realize until later in life. At the time, I thought I was just getting a stomach virus a lot…)

It was the 90s… Before the internet, I would just wonder … “Do I have health problems or am I just a hypochondriac?” Then, I would  make sure my parents didnt think it was a big deal, and they NEVER thought my health issues were a big deal. They just thought I was a big complainer and they just needed to toughen me up ….

But, by 24, my parents even thought I could have a serious health problem and encouraged me to see an endocrinologist.  My neck was swollen, and my dad had had thyroid cancer so we all agreed that that’s where i should start.

25: After my labs came back normal, my new endocrinologist said there was nothing wrong with me, just like everybody else. I felt like he was wrong though.

So, THAT was the beginning of my medical internet research. WebMD should probably give me an honorary doctorate by now.  From them and the internet as a whole, I learned that your thyroid blood labs can be normal, and you can still have a thyroid problem.  You can have an autoimmune disease called Hashimoto’s Thyroiditis. My symptoms matched.

I went back to see my doctor. I told him what I learned and asked for a TPO antibodies test. He said no because he thought I was wrong. I’m not persuasive but I’m annoyingly persistent. We argued until he agreed.

I had the blood test done and went back the next week for a follow-up. The test was positive.  I had Hashimoto’s Thyroiditis. And, ohhhhh my, you should’ve seen how hard it was for him to tell me that. That fight kicked off 2 decades of arguing with doctors.

28: Got colitis. I was in the ICU for 3 days & in the hospital for 6 weeks. I never felt healthy again.

28-32: While working in LA, I was being treated at UCLA for migraines/prolactinoma/ enlarged pituitary/ pineal cyst/brain scarring (NOTE: I asked to be checked for a CSF leak. They never did. Almost 2 decades later, I learned an enlarged pituitary & a prolactinoma are both signs of a CSF leak. At that age, I had not read enough to help myself so I just continued to suffer.)

31: I had a migraine every few days and I had a headache every day for a solid year. I was depressed that I was in so much pain. It interfered with work & my relationships. I made 2 suicide attempts in LA.

32: Thyroidectomy- The doctors said they thought it would get rid of my migraines. I was desperate for relief so I agreed.

32-46: The constant headache stopped, but I was still getting some kind of monthly stomach migraine before my period. It would cause me to vomit 20-30 times before my body would calm down. ER Nurses told me they thought I had cyclic vomiting. Doctors told me nothing was wrong bc my blood tests were normalish and (AGAIN) suggested psychiatric care.

36: I made 2 more suicide attempts while I was living in Phoenix- I felt too sick to create a life worth living. Got admitted to a psych ward. Learn I have BPD & got out and went through a yearlong DBT program that helped a lot.

40: A gynecologist tells me I’m full of fibroids and advises me to torch my uterus.  I put this off because I’m moving from LA to Chicago

40-45: LA doctors said nothing was wrong with me. Chicago doctors said there was nothing wrong with me.

45(July 2020) -Mom has to have a 2nd bone marrow transplant, and I move home to help. I kept getting sick throughout the pandemic, but I never get Covid.

45(Jan 2021)- Fell on the back of my head on my parents tile floor tile floor, sadly while dancing like a fool. My monthly stomach migraines become weekly stomach migraines.

(Fall 2021)- I find an email I never saw in a patient portal. A year earlier, my endocrinologist emailed me my spleen was chockful of mono cells (EBV). She offered me no help or guidance. However, getting that information helped me realize EBV could be a part of my chronic illness.)

(Dec 2021)- Had to stop working at a tech company. I started falling asleep on my breaks & having panic attacks. It was harder to deal with angry customers, and I was having short term memory problems.

47(Fall 2022)Had a spiritual awakening that made me look at my illness differently.  I finally realized my SPINE was the problem. For four decades, no one had ever checked my spine.

-Fought with primary care doctor to get a referral to a neurologist. She said she wasn’t going to order any tests and she hoped I wasn’t just wasting the doctors time.

-Fought with the neurologist who said I wasn’t sick. He said he could tell just by looking at me. Then, he embarrassed me in front of his staff until I cried. He refused to do imaging of my whole spine. He said he would only order a brain MRI and a cervical MRI. He also refused to order contrast. Contrast is important when you’re looking for a leaking fluid in the body.

-(December 2022)  A week later, I got my cervical MRI report. It said I had cervical stenosis. I never went back to neurologist #1.  I knew I had to find a new neurologist to do the rest of the spine (thoracic and lumbar) with contrast.

-My doctors said I was too young to have cataracts. Then, I went to an eye doctor. They found & removed multiple cataracts from both eyes. I could see again, but I didnt like what I was seeing. Why was my body falling apart? 

-(January 2023)  Found neurologist #2. He did the rest of the MRIs and diagnosed me with cervical stenosis, facet joint capsulitus, bone spurs, arthritis & disc slippage. I also asked  to be tested for a CSF leak. He said he would, but he never did.

(NOTE: I asked several doctors to test me for a CSF leak (throughout the time I’ve been sick), and they ALL blew me off. At that point in life, I didn’t know Big Pharma pays doctors to not order tests. If doctors don’t order tests, they can’t diagnose you with a problem that your insurance will have to pay for.)

-I started pain management. The doctor made getting pain pills difficult & told me ESIs (epidural steroid injections) are my best bet for pain relief.

(NOTE: The doctor was lying. ESIs are dangerous & ineffective for back and neck pain. I went through with it because I thought there were good doctors that you can trust. I had not yet done enough research to understand they were dangerous so I trusted the doctor and went through with it.)

I had an intense adverse reaction to an ESI- Epidural Stetoid Injection. It increased my pain to the point where I thought I was going to lose my mind, and I’ve been though a lot of pain.

It was so intense and the pain kept climbing. 12 hours late, the pain started to subside. I did my research and discovered ESIs & epidural & spinal anesthesia are not FDA APPROVED but doctors give them out to as many patients as they can. Why do they do this? Because they prioritize profits over patients.

I began researching epidurals/spinals and made some shocking discoveries that doctors and big pharma know but do not want the public to know. Pregnant ladies need to know that doctors rarely check for a CSF leak before labor. If you have one, it could make your labor pain much more painful. How do OBGYNs get away with not checking for CSF leaks before & after birth? It’s criminal.

I started a Patreon to raise public awareness about CSF leaks & epidurals to help other people

-Injured in a domestic violence incident

-Had a seizure, face planted into the cement & broke out my teeth- I spent a week in hospital & a week in a behavioral health hospital.

-(May 2023)-my pain management doctor told me to go to a neurological hospital ER after they looked at an incomplete brain MRI, and it showed intracranial hypotension.  In the ER, they treated me badly, like I was just seeking drugs (as usual). They didn’t think my pain was real.

I kept asking for a new doctor until I got one that agreed to do what i was asking. I got 4 MRIs …Brain + Spine (cervical thoracic and lumbar) with contrast. They wouldn’t let me look at the tests/imaging that day. They told me I didn’t have a CSF leak & sent me home. I wanted to see my reports. They said hospital policy didnt allow anyone to look at their records until 3 days after you leave.

-Three days later, I signed up for the patient portal, and I got to see my reports. On 3/5 of the MRIs, doctors found evidence of a CSF leak.

3 OUT OF 4 MRIS said I had a spinal CSF leak. Those medical professionals found evidence of a CSF leak. Then, they lied to me & said I didn’t have one & sent me home because they didn’t want to help me. I stopped trusting doctors.

-Diagnosed myself (basically) with a chiari malformation and cerebellar tonsillar ectopia (brain herniated out of my skull into the spinal canal, putting pressure on my brain stem) and a CSF LEAK. I figured this out from reading the reports. Always read the reports!

-Since July 2023- I’m mostly bedridden because the pain and nausea/vomiting increases when I stand. It can be completely debilitating.

48-(Aug 2023) I had a blind blood patch, but it only helped a little, for like a week. Then, the CSF leak opened again.

49- (September 2024) Applied for disability in 2022 & got denied twice. In 2024, I got a lawyer and got approved and now I’m on disability.

49-(October 2024) Diagnosed with a cranial CSF leak so now I have evidence of two CSF leaks (spinal & cranial).

It’s December 2024 now. I’m in a lot of pain and weaker than ever and I still cant get any help. However, I have Medicare now, and I’m hoping that doctors will be more helpful. Sadly, if you have Medicaid, most doctors don’t want to help you. Poor people just suffer in our healthcare system. It’s awful.

When it comes to healthcare, we need to change… everything…

Please feel free to share your chronic illness story in the comments… we can learn from each other’s experiences.