To
date, my last update was 10/11 and I write exactly one month later on 11/11.
Let
us thank those who have served our country in the military today on Veteran’s
Day, including my father who was a Navy Commander for 28 years.
I’ve
stopped counting the weeks since I went to the ER on 6/15. Instead, I’m
aware that this Friday the 15th will be 5 months. I’ve been
sick and out of work for several months. And I’m still sick with this
terrible illness.
After
the negative experience at the neurologist’s office about a month ago when I
saw his nurse practioner and she did not know what Ramsay Hunt Syndrome was, I
attempted to take control of my own treatment. The nurse practioner
had doubled my medicine without instructions even after I told her I want to
stop taking all the medicine, so I doubled my medicine the next day and I
completely lost my mind in that I could not think from being so drugged.
I then decided to stop taking the 9 pills by removing 1 pill a day, which I did
for 9 days and it was awfully unsuccessful. The pain came back, bad, like
it was in June and I was broken-hearted to realize I had not gotten better at
all. So, I ramped myself back up on the medicine adding 1 pill back in
each day. It is so conflicting for me to take all this medicine knowing I
need it to combat the rampant pain even though I don’t like taking pills.
I
went to a new neurologist last week, Dr Luisa. It’s my mom’s neurologist
and this doctor is out of network, so my mom is paying out of pocket and she
thus went with me. This neurologist is my age and dresses like me.
She was very nice, thorough and took a long time with me listening to my story
and asking questions. I told her I am either in extreme denial about
having RHS or my instinct is correct and I have something else. She also
questioned if I really have RHS and committed to doing some research to see
what else could be causing me so much pain after the initial facial
paralysis. She wants to go back to the beginning and re-do many of the
tests including a MRI of my brain with contrast to see how badly damaged my
cranial nerves are and to do more bloodwork. I am so desperate I am
willing to do these tests and even told her I am willing to do some injection
shots into my skull to help with the pain. However, she emailed me this
morning and said she thinks the RMS is actually correct and gave me this article
link to read. I am scheduled to return to her on 11/29 and hope the
insurance approves these tests so I can get them done before I see her again in
a few weeks.
I’m
continuing with yoga and it is helping me get stronger physically as well as it
gives me a place and space to process all of my emotions from this experience.
Also,
I am still going to the chiropractor and acupuncture once a week.
I
just read Brene Brown’s “Rising Strong as a Spiritual Practice” and really
liked it.
I
am taking a whole bunch of vitamins and supplements as well, like turmeric and
even a 10 mushroom powder that is supposed to boost the immune system and a B
Complex that is like fuel for the nervous system.
So,
I am trying my hardest to get better and heal.
I
want to stop feeling and fearing this pain. I want to return to my life
and work. I want this experience to be over.
I
am aware of the many changes that occurred as of
late. I imagine that was very hard in many ways for you all. I hope you all support each other and take care of yourselves
to process all of your emotions from that experience. Breathe, keep your
chins up and practice gratitude.
I
am hoping with all my soul that I can do my job again as a Sr. EC after the
holidays, w/o this pain and all of this medicine.
Tell
everyone hi and thank you for allowing me to email you with my updates. I
miss you all and I
wish you all well (I dedicate this song to you each),
Susan
#RamsayHuntSyndrome
#RamsayHuntSyndrome
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