Email to work colleagues about my Ramsay Hunt Syndrome - Questions

From: Susan
Sent: Friday, September 27, 2019 2:01 PM
To:
Subject: RE: questions

There’s one more point I want to make.

Am I getting better?  Yes.  It is slow and more of a month to month measurement.  I compare where I am now compared to June and July and I can see improvements.  I compare where I am now compared to August and I don’t feel too many improvements.  But, I am not bed-bound and in pain 24/7 anymore (knock on wood).  I get up each day and the pain comes and goes.  The intensity of the pain is still pretty bad when it hits now, but I am just going to say that it’s less than in June and July.  So, am I improving?  Yes.  I am.  And I eagerly await the ability to respond, “good,” to the common question, “How are you?” 

From: Susan
Sent: Friday, September 27, 2019 11:48 AM
To:
Subject: questions

Hello,

I debated this week about sending an update email because I do not have much that’s new to say.  Yet, I feel writing helps me articulate my thoughts and brings clarity.

I am still sick.  I am still struggling with this Ramsay Hunt Syndrome.  It is such a confusing illness.  I have moments where I feel okay and then the illness hits me.  The irregularity of the pain now makes me wonder if the virus is still active and has moments of attack or if the medicines are mostly masking the pain.  The uncertainty of each day and my future is something that’s hard to grasp. 

I went to the Neurologist last Thur.  His name is Dr. Justin Moon and he’s on the Porter Hospital campus.  He won Denver’s #1 Neurologist in 2018 and he worked at the Mayo Clinic previously, so that’s reassuring.  I let him know that I still deal with the pain and so he added in another medicine.  Thus, on top of taking the full dose of Gralise (1800mg, ugh), I am now taking Oxcarbazepine two times a day.  Both of these medicines are basically nerve inhibitors and are prescribed for nerve damage and pain.  He had also prescribed some bloodwork and one text came back with a high flag.  My TPO was 100 and the range is 0-30, so that shows I have a lot of antibodies fighting against my thyroid.  My left eye has also been hurting now too for about two weeks and my vision is blurry.  So, Dr. Moon referred me to an optometrist and endocrinologist.  I return to Dr. Moon on 10/10. 

I’ve yet to schedule the optometrist nor endocrinologist.  I have doctor fatigue.  I have appointment fatigue.  I have fatigue of managing the logistics of this illness with the insurance, doctors, appointments, FMLA, long-term disability.  I’m exhausted of dealing with this RHS.

Weirdly enough, I’m cycling through the stages of grief with this illness.  I rotate through shock, negotiation, denial and acceptance.  I’ve felt denial this week.  I mean, how can I have Ramsay Hunt Syndrome!??  How is it possible I have an illness no one has ever heard of?  How is this my life now?  How in the world did I get this very rare illness?  Why won’t the pain go away?  Do I really have RHS?  Why can’t I go back to work?  How do I have RHS?  Why is the pain still so bad?  How am I taking so many medicines?  AHHH!

Also this week, I’ve gotten so mad when I feel the pain.  The pain is making me so mad!  I scream at the pain to go away, to leave me alone.  I don’t want this pain. 

Logistically, I’m now on unpaid time-off and my long-term disability was approved.  I have FMLA until 10/25.

My family is good.  Jimmy has been so caring.  My boys have been so understanding.  My parents have been so dedicated.  My brothers have been so loving.  My friends have been so nice.  I am surrounded by support.  I give thanks abundantly for all this love. 

To fill my time, I’ve been watching movies about presidents.  I just watched a documentary about Nixon, which is perfect timing for what’s going on w/ Trump right now.

Global, please don’t give up on me.  Please believe in me.  Know that I am trying to get better.  I want to return to work.  I am taking the medicines and vitamins.  I am resting.  I am going to yoga.  I am doing all I can to heal and recover.  I want to be healthy.  I want this illness to be in my past.  I miss you, all of you.  You all are a light for me that shines bright.  Keep the faith that I will return to you all.

So, Sept is about over and we’re on to October on Tuesday.  May this month be good to all of us,

Susan