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

Three month reflection about Ramsay Hunt Sydnrome

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