From: Susan
Sent: Friday, October 11, 2019 4:40 PM
To:
Subject: 18 weeks 10.12.19
Sent: Friday, October 11, 2019 4:40 PM
To:
Subject: 18 weeks 10.12.19
Hi,
Tomorrow marks 18 weeks
since I went to the ER. I’ve been sick for four months.
This week, I watched a
documentary about Franklin Roosevelt. He got infantile polio when he was
38 years old. I’m 38. For days, no one knew what was wrong with
him. He became paralyzed and never used his legs again. His doctor
told him that there was a storm in his body and his body was what was left
after the storm. I relate. It also hit home how destructive viruses
can be in our bodies and that we have no control over them. Viruses are
so scary.
I went to the
neurologist’s office today for the 3rd time and had a negative
experience. I saw the nurse practitioner this time and she had never
heard of Ramsay Hunt Syndrome. She was unable to answer any of my
questions. She did not provide me with any new information. She had
no idea how to help me. She stumbled through answering my questions and
repeated basic information in her efforts to seem like she knew what she was
talking about, but it was very obvious that she had no idea about RHS. It
was frustrating for me and surely embarrassing for her. I left the office
feeling upset and so I called the office to leave a VM with the office manager,
so she could figure out why the neurologist had me meet with someone who was
unprepared to help a patient with a very rare illness. I’m supposed to go
back in 6 weeks. All the nurse practitioner did was double my medicine,
but w/o any instructions about tapering up.
I’ve been wondering if
I should seek a second opinion, but it’s so hard to get in with a
neurologist.
The pharmaceutical
industry is more than I can comprehend. All these pills I am taking
astounds me. All these chemicals is extreme.
Because of my left eye
pain and blurriness, I’ve gone to see an eye doctor 3x in the past few weeks.
She found the inside of my left eye to be inflamed and so my eyeball is
swollen. My vision is 20/25 in the left eye, so she’s had me on steroid
eye drops and said I may need glasses if my eye does not self-correct.
She too had never heard of RHS.
I’ve yet to find anyone
who’s heard of RHS.
I’m still having a hard
time accepting I have RHS. I am really starting to think I don’t have
it. But, what else could I have? I don’t know.
I just don’t understand
what is happening to me.
I’ve been going to yoga
and it helps me.
I met a guy who works
in health care. He told me that he recently went to a conference about
the nervous system. He said over and over, “Nervous system illnesses take
a long time to heal.” A long time.
Our nerves are what
physically feel for us. When our nerves get sick, they hurt worse than a
muscle or bone. When nerves are damaged, they take longer to heal than a
muscle or bone. The nervous system is so complicated. Nerves are so
complicated.
I received my first
disability check. I’m grateful we have that benefit as well as Jimmy
& I are debt-free and have emergency savings. When the disability
says 66%, it ends up being 32% after taxes and having to pay for our insurance
premiums.
My FMLA runs out on
10/25. I’m thinking about that date a lot. I already know I will
not be ready to return. I do not want to lose my job. I don’t want
you guys to let me go. I want to come back to my job. I want to
return as an EC. I kindly ask you to have faith in me that I will get
better and be able to do my job again at Global. Maybe after the New
Year…
I feel I have not had
much grace in these emails and I am sorry for that. I’ve been totally
honest and transparent. Writing these emails to you guys is so
therapeutic for me, so thank you for being there for me. There are so
many positive aspects of my life and I recognize the many privileges, blessings
and good things I have.
Good job with Fall D
and all of your contributions at work! I hope the new building is an
inspirational space. You all are wonderful people,
Susan
