My Rare Health Condition

It started off as a shortness of breath.

This was nothing new to me because I

have had asthma ever since a child.

Therefore, I pushed through.

Next, I noticed rashes on my legs

and neck. I thought this was because

I was living in an old apartment duplex

in the time. I then began to get these

extreme harsh migraines. One was so

bad it kept me out of work, in the

bed all day. I ensured myself this was

because of my cycle as a woman. So

I again, pushed through.

The next month, I developed tonsilitis.

In my whole life, I had never had this.

Around this sickness I began to notice

pain in my chest. Overtime, it got worse.

After going to the doctor numerous times

I was told it was stress, anxiety or costochondritis,

neither were right. The chest pain grew from

a 4 to a 7 on the doctor's pain scale.

It began to interfere with my

daily life. Simple tasks at work felt

unbearably hard. After being prescribed

prednisone, anti-inflammatory and

fluoxetine, with no relief, I went to the

doctors' again. At this point, my chest

pain ranged at a level 9. The pain brought

me to tears. I couldn't pushed through

anymore.

So there I was, at the doctor's office

again. My doctor decided to do some

labs. This was the very first time it

happened. I did not just 'pass-out,'

I blacked out. When I woke up, I was

hot, sweaty and in an immense

amount of unexplainable pain everywhere.

My muscles screamed out in pain

but I could not verbalize anything

because my jaw was clenched shut.

My entire body, my feet up to my neck

was so tight and stiff. My arms and

hands had drawn up to my chest in a

unnatural way. A couple of nurses

couldn't even move my limbs.

The worst part about it was indeed

the pain, but my psychiatric status was

so much worse. I did not know where

I was or who I was. I had never been in

so much pain before. I lay there exhausted,

frightened, confused and unable to speak.

Though my body was physically in the

room, mentally I was not.

Thank goodness I was already

alying down. I had previously informed

the nurse I did not do well with needles.

My body shut down while also going

into the flight or fight mode. All without

my consent.

I had failed to realize my body

had been trying to tell me something

all along. This entire time, my body

was battling something that I was

totally unaware of.

I was taken to the ER and stayed

for several hours. They ran some

tests only to find nothing wrong. So

they released me. I was sore for days

and felt so slow. I felt as if I had just

participated in a triathlon.

I was also slow to speak and

unable to move at my regular pace.

It felt as if I had a stroke. I soon decided

to move back with my parents. We

later decided to do our own investigating

because something was not lining up.

In my apartment, we found several

types of molds growing within my

home and the air.

I began to stay at my parents. We thought

this would help me regain back to my normal

state. One evening, I had another PNES at

my parents' house. We were not doing anything.

We had been watching television in the den

together. Again, I was unable to speak or

move. My arms and hands begun to draw up.

My dad rushed me to the AnMed ER

only to be disappointed. I was placed in

a wheelchair, left in the waiting area. I

was unable to speak and my hands

had drawn up.

Frustrated and concerned, my dad

called another hospital. An ambulance

picked me up and took me to the Memorial

hospital in Greenville, SC. This was the first

time I was an in-patient. I stayed there for

four days and three nights. The entire time,

sleepiness overtook me. It felt as if

everything was in slow motion.

During my stay a toxicologist and

his team came to observe me. In the

state I was in, he strongly advised me

to not return to my apartment due to

the mold. I had family friends pack

up all of my belongings.

While I was at the Memorial

Hospital, I received great care.

The nurses and doctors were gentle,

kind and patient.

They completed every test on

me known to man. This included MRI's,

ultrasounds, tons of labs, EEG, EKG

and X-rays etc. I cannot recall the day

and time but while I was hospitalized, I

fell into another PNES. The doctors

and nurses were flabbergasted.

I felt frozen again. I was in immense

pain. I remember tears running down

my face because I was scared and

confused. The doctor asked me questions

I knew the answers to but could not speak.

After my hospitalization, I was

sent to a pulmonologist. He has been

treating me for severe asthma and

numerous allergies. I also saw a

neurologist and allergist but neither

could help.

I had another episode while I

was at my allergist appointment.

Her team was unprepared and did

not know what was going on. Later

the allergist informed my mom she

had never seen anything like it. My

allergist called an ambulance and

they picked me up and took me to

the ER.

Ever since August 2024, I have

had over 20 of these episodes. I still

have not received many answers. No

specialists within my vicinity know

what is going on.

My pulmonologist has been the only

help. At this time, he has referred me to

attend a research hospital. Therefore, my

mother has effortlessly reached out to

Duke in NC, Vanderbilt in TN and the

Mayo Clinic in FL.

The Mayo Clinic accepted me and

we plan to go next month. So far, the

only conclusion we have is that my poor

living condition triggered something.

My asthma has gone through the roof

and I struggle with symptoms I've never

had before. I also recently discovered

I have extreme allergies to dander, grass,

white oak trees, weeds etc.

I am extremely sensitive to any smell

and odor. Furthermore, I have a bad

sulfite sensitivity and react to preservatives.

Therefore, I have drastically changed my

diet, constantly doing research.

I still struggle with unexplained,

un-predictable rashes, symptoms

and these non-epileptic seizures.

Whatever happens, God is still

in control. He is also still good

because His goodness is not based on

our goodness or easiness of life. God

is good because that is who He is.

Stay Tuned!