My closest
friends,
I am taking
time to write and reflect today on
the three month mark since I went to the ER on 6/15 and my life became altered
in every way due to this medical situation.
To review,
nine weeks after being diagnosed with Bell’s Palsy, I was re-diagnosed with Ramsay Hunt Syndrome by an ENT on
8/13. I have Shingles in the nervous
system on the left side of my head that caused partial facial paralysis and
extensive nerve damage. RHS is a
terrible illness.
The ENT
recommended I go to a Neurologist if I continued to have horrible pain. This illness has been marked for me with
awful pain and so I went to the
Neurologist on 8/23. The Neurologist
confirmed the RHS diagnosis and prescribed a different medicine called Gralise
that is specifically for nerve pain and damage caused by Shingles. He prepared me to deal with this illness for
months to years. He said I need patience and time. RHS is a “very” rare illness and I am in the
8% of those afflicted who did not get the typical Shingles visible rash. I have a follow-up appt with him on 9/19.
My facial
paralysis is much better and I look pretty normal. People would not know there is something
wrong with me if they looked at my face, even though I can see the
imperfections still of my swollen left check, crooked smile and puffy left eye.
The sickness
is in my nervous system, particularly my left ear, and so I mostly must heal internally.
I’ve yet to
find someone who’s even heard of RHS before.
I’m still
not working and I’m unsure when I will be able to return. I’ve applied for long-term disability. I miss
my colleagues so much. I miss
working and feeling the purpose of my job.
I can get up in the mornings. I can
provide breakfast for my boys and get them out the door to school. I can do
light housework. I can water the plants. I can drive. I can
go to yoga and take it slow & easy.
I can eat dinner at the table
with my family. I can go on unhurried and calm walks.
I can read and write. I can
use the computer. I can spend much of my time resting.
I can pray and I do so constantly,
counting my blessings and practicing
gratitude all day each day, while
also asking for help.
I recently
read a biography about Fred Rogers and he said his mother taught him to look
for the helpers in the aftermath of
a tragedy. I recognize I have many helpers in my life since I became sick
three months ago and I give thanks
for each person who’s given me love,
hope and support. This illness is
the hardest chapter in my book and I focus on the helpers because they’ve shown
me compassion, grace and kindness. I am grateful for my devoted husband to my
entire dedicated Smith & Lopez families to my loyal friends to my
understanding colleagues and the caring people from church. Thank you all for being such important helpers in my life during this difficult
time of pain, fear, uncertainty, confusion and sadness.
Some helpful
advice I’ve received is to “get close with God” and to “grab the good
moments.” I remind myself “I am a child
of God” when I look in the mirror and “I am loved.”
I know too to
not wonder, “why me?,” because I know too to ask, “why not me?” Humility is important to me.
I’ve
listened to a lot of Ben Harper and this popular song
played on the piano.
Since there
is limited information about RHS online, I joined a FB support group for
RHS. I’ve logged in 2x and do not plan
on returning because it scared me more than supported me. One lady posted that she’s had RHS for 22
years, another for 11 years and some for a couple of years. People post about the neurological problems,
autoimmune diseases and negative side effects from medicines. All those posts terrified me.
I admit I’ve
judged myself a lot during this illness and I work diligently now to let that
self-judgement go. I feel judgement that
I somehow caused this illness to happen to me and it’s my fault I’m sick. I feel judgement that I have not just been
positive and made this illness go away.
I feel judgement I’ve been unable to ignore the pain and keep living my
regular life. I feel judgement that I
can’t just force myself to get better. I
logically know these judgmental thoughts do not help me though and that’s why I
am trying mightily to release this negative self-talk.
I remember
the emotional process from 6/15 until today and I’ve obviously had a wide array
of emotions. I remember the pain that still affects me. I remember feeling so confused and scared
when I thought I had Bell’s Palsy because my symptoms did not make sense for
that diagnosis. I remember not
understanding how I could have RHS after the ENT appt. I remember feeling mad and shocked that I
have RHS after the Neurologist appt. I
remember feeling disappointed and sad every time I had to cancel plans. I remember the path of pain that continues. Lately,
I am trying to feel acceptance that
I have RHS. My goal is to feel peace.
And I stay true to my values of feeling gratitude and love.
Gratitude and love keep me grounded, focused on what’s important to me
and with a positive perspective.
I believe I
will someday look back on this experience and be able to reflect on positive
lessons.
The journey
of the past three months has obviously changed me, changed my life and changed
my family. There’s been so many
difficult moments and so many amazing moments too. I’ve learned pain can change a person and yet
I want to stay true to my values of love and gratitude. I repeat that RHS is a terrible illness and that
so much good surrounds me. I am still sick and not ready to return to my
life and so I ask for your continued love, support and prayers. I pray for all of you too and our world.
May we all
have peace! Reflecting,
Susan
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