Email to my work colleagues called "On the up and up, hopefully, finally" about my Ramsay Hunt Syndrome journey

I have many good things to share that give hope that I am finally on the up and up.

Of the nine pills that the doctors have prescribed for me, I am down to only taking three a day.  That’s good.

I can now do every posture in yoga classes.  That’s good.

I got a MRI of my brain with contrast on Monday and it came back normal.  I had more blood work on Tuesday and it came back normal.  That’s good.

We went to Mt Princeton Hot Springs last week and I soaked in the mineral waters for 16 hours over four days with the hopes of being healed.  That’s good. 

I started taking magnesium vitamins to promote my muscular recovery in my face.  That’s good.

I cooked my three traditional dishes for Thanksgiving and we went to my parent’s to eat with my whole family.  That’s good.

I continue to go to the chiro and acupuncture each week.  That’s good.

I started seeing a health professional weekly through zHealth who gives me drills to do every day that’s like physical therapy for my nervous system.  That’s good.

I experimented with getting three lidocaine injections in my upper left back two weeks ago to reduce swelling and pain with the hopes it would calm down my left neck, ear and head.  I think it helped and so I went again yesterday and got five shots this time, which I think have helped too.  That’s good.

The holidays are upon us and the time of giving, excitement and Christmas music lifts my spirits.  That’s good.

I still tire very easily and so I still give myself lots of rest time during the day and plenty of sleep time during the night.  That’s good.

I got a TENS unit (electrical nerve stimulation) and I’ve been using it on my upper left back & neck to treat pain and encourage nerve regeneration.  That’s good.

I’ve played a lot of Backgammon, chess and other card games lately with Philip and he now can honestly beat me.  That’s good.

Jimmy leaves on Thur for Costa Rica for a week alone to see his family and to take a break.  That’s good.

I feel less pain now, the pain is less when I feel it and it lasts for less time.  That’s good, really good, great actually!!!

I admit I still do not understand how I have Ramsay Hunt Syndrome.  I’ve had several medical tests and every one had normal results.  Yet, the partial facial paralysis and debilitating pain for several months have no other medical conclusion.  What else could I have?  Why did this happen to me?  I’ve accepted that many of my questions will go unanswered.  I just don’t know what happened to my body back in mid-June that caused me so many health issues. 

My goal this month is to strengthen myself physically and mentally.  That’s good.

I’m thinking of a potential return date of 1.7.20 for me to come back to you all.  (My boys don’t have school on 1.6.20 and I want to start working when I can fully focus on me.)  After being so sick and being out for so long, I’m wondering if I could return to work with a 30 hour a week schedule for a month or so.  Is this possible?  It would be good for me.

I am grateful for my employment at CSU Global.  That’s good.

I give thanks for you four and y’all allowing me to email you with my updates.

So, am I finally on the up and up?  I sure hope so.  It’s been six months and I am so ready to be strong, healthy and happy again.  

I wish you all safe and healthy holidays this December 2019,

Susan

#RamsayHuntSyndrome

Email update to colleagues on 11/11 - Rising Strong - Ramsay Hunt Syndrome

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 15^th 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

Email to colleagues at work about Ramsay Hunt Syndrome - 18 weeks

From: Susan
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 3^rd 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

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

Email update about my Ramsay Hunt Syndrome to my work colleagues 8.29.19

From:
Sent: Thursday, August 29, 2019 8:55 AM
To:
Subject: Not ready

Dear,

I am so upset to write this email.  I hate Ramsay Hunt Syndrome.  I hate this. 

I can’t come back to work on Tuesday like I had hoped with my whole heart.  I had planned on returning on 9/3.  I was trying so hard to be ready to come back and do my job.  My family was preparing for me to start working again. 

But, Ramsay Hunt is a terrible illness. 

After a few good days, I spent Tuesday and Wednesday in bed with pain.  The pain is so debilitating.  It flattens me and makes tears fall out of my eyes steadily. 

Shingles with nerve damage… SO painful.  I’m so mad I have RHS.  How in the world do I have Shingles in my ear!?!  I don’t understand. 

I’ve been told Shingles is the worse pain ever by many people and health care professionals.

I’ve spent some time this week reading “RHS blogs” and watching “RHS videos” on YouTube.  It’s helpful to hear other people’s stories that are often similar to mine in terms of being diagnosed w/ Bell’s Palsy or an ear infection first and then getting the RHS diagnosis because of the horrible pain.  People talk about the pain being unlike anything they’ve felt before in that it’s unbelievably excruciating.  On the other hand, it was disheartening to listen to the amount of time that people were/are sick with RHS.  Months, years. 

The Neurologist told me, “Be prepared to deal with this for months to years.” 

I also have hypersensitivity in my left ear, which means sounds are unbearable for me because they are so exaggerated.  Thus, noises irritate me greatly. 

A common symptom of RHS too could be hearing loss. 

I’m so scared about when I will really be able to come back to work.  I think of a colleague and how much he loved CSU Global, but he got sick and was unable to return.  I don’t want that to happen to me.  I want to return to CSU Global!  I want to go back to work!!! 

I think the two worse feelings are ‘pain’ and ‘fear.’  I feel both of these every day.  Feeling pain and fear together is awful.  It’s overwhelming to feel pain and fear for such a long time, knowing too it will likely continue.  

Hope is an interesting thing.  It can help us feel positive.  It can also be disappointing when something we hoped for does not happen as soon as we want.

I wish I was better and I could just go back to work on 9/3 and be good to go with confidence. 

I wish this Shingles would go away.  I wish the pain would go away.  I wish my nerves could heal easily and quickly.  I wish my immune system and nervous system were healthy.  I wish this RHS would go away.

I’m so sorry for being a rollercoaster with you about coming back to work and with the ups & downs of this illness.  I truly apologize.  I recognize that this email is rather negative and all I can say is that I am very, very upset w/ this RHS illness and how disrupting it is for my life and for my family.   

Thank you though for listening.  I’m so grateful I can share my experience w/ RHS with you three.  I greatly appreciate you!!!  I miss you all.  Please tell everyone hello for me. 

I wish you a good Labor Day weekend,

Susan 

Email update to my work colleagues about my Ramsey Hunt Syndrome 8.26.19

From: Susan Smith
Sent: Monday, August 26, 2019 1:54 PM
To:
Subject: Hoping for 9/3

Dear,

It’s been really down and then up since my last email  a week ago.

Last Tuesday night, I went to the Urgent Care after urinating blood and got my first bladder infection.  It’s likely not related to RHS nor the meds I am taking, so was probably just a random thing that happened.  I got antibiotics, spent a few more days in bed and it’s better now.

On Friday, I went to the Neurologist and he confirmed I have Ramsey Hunt Syndrome.  He changed my medicine from Gabapentin, which is mostly used for nerve pain, to Gralise, which is a name-brand med specifically for Shingles.  Whereas Gabapentin is a clunky medicine and can have 12 pills a day, Gralise is only 2 pills at dinner and so it’s much easier to take.  I am thus very hopeful that the Gralise will help with the pain until this Shingles virus goes away.  It’s been difficult for me to accept that I have a “very” rare illness and the Neurologist said I’m in the 8% of RHS who do not get the rash. 

The Neurologist also said I can return to work as soon as the pain is gone and I am ready, so I am hoping for 9/3 with all my might.

The Gralise is supposed to work quickly and I see two positive signs already from it.  I had a good weekend because I went for a 2 hour walk on Sat and we went to see a movie yesterday.  It felt so good to get out and feel okay.  Then, I woke up today w/o pain for the first time since this all started and that was really nice. 

I’m at 11 weeks and my face looks pretty normal.  My left eye still doesn’t blink and my left check is still swollen. 

I know there’s been a lot of change at work, like usual, with the new phone system, new SF file statuses, a new hire class and a new training site.  Wow, good job!

I’m sorry I could not help the team with Fall A, B or C, but I’m hoping to contribute to Fall D!

So, hopefully I’ll see you guys in one week from tomorrow.  I hope I have a good week and you too.  I hope this Gralise medicine works for me.  I hope the pain goes away.  I hope I get better soon.  I hope the team makes Fall C.  I hope to return to work on 9/3,

Susan

Email update to my work colleagues on 8/19/19 - back back back

From: Susan Smith
Sent: Monday, August 19, 2019 11:14 AM
To:
Subject: Back back back

Hi,

I had hoped to return to work today.  I really had.  I was planning on it.  I have not even requested my PTO yet for this week.  I really want to get better.  I don’t want to be sick anymore.  It’s been 10 weeks.  10 weeks!  I’ve been sick for 10 weeks.  I just want to go back to work. 

And yet, this past weekend happened and I’m back in bed. 

I was feeling pretty good last week.  I was doing okay physically and was even able to do some outdoor activities that I had planned months ago.  I got the new RHS diagnosis and the new medicine, so I was even feeling optimistic.  I was believing I could return to work soon. 

Then I started to feel bad on Friday afternoon, went to bed and spent the entire weekend in bed.  The pain came back, bad.  It was like when this all started.  I felt like I was getting worse.  Tears would just pour from my eyes from the pain.  It’s been terrible. 

And then something even worse happened last night.  I had like an allergic reaction to the medicine, or something weird happened, and Jimmy almost called the ambulance.  Again, my boys were so scared and crying.  I had severe dizziness, my chest hurt and I had trouble breathing.  It was so scary.

So, that’s why I’m not back at work today.  And again I don’t know when I will return to work with how confusing and complicated all of this is for me.  I am trying so hard to get better and I want to return to work.  I have an 8/30 appt with a Neurologist.  So, maybe I can come back to work on 9/3 if the next two weeks go well for me and the Neurologist says I’m good to go. 

Thank you for allowing me to email you with my reflections and being here for me.  I’m very grateful for you three and CSU Global.  I miss you all so, so much.  I think of you all constantly and just want to get well so I can get back to you all.

Susan

Ramsey Hung Syndrom email update to my friends on 8/14/19

Dear Friends,

I am writing with an update on my medical situation.

It seems the diagnosis given to me in the ER on 6/15/19 of Bell’s Palsy was wrong.  I went to an Ear Nose Throat doctor (ENT) recently and he changed my diagnosis to Ramsey Hunt Syndrome (RHS).

Over the past 9.5 weeks, I’ve been to the ER, my Primary Care Physician (PCP) 4x, my chiropractor weekly, 2 different acupuncturists 4x each, an orthopedist, a physical therapist and a mental health therapist.  I’ve had a CT scan of my head with contrast, a MRI of my brain without contrast, two blood draws and x-rays of my spine.  I make an average of 5 phone calls daily to my insurance, doctors and specialists.  It has been a lot of work and I’ve spent a lot of time to manage my health care this summer.  Meanwhile, I have not been to work since 6/14/19 and I admit I really, really miss my job.

From the very beginning, I’ve had severe pain with this medical situation.  My first symptom was pain deep in my left ear.  I’ve continued to complain of the intense pain in my left skull, left ear, left face and left neck to the different health care people I’ve seen.  The first acupuncturist said, “This is the worst case of Bell’s Palsy I’ve ever seen.”  My chiropractor said, “This is the most complicated case of Bell’s Palsy I’ve ever seen,” and referred me to a Neurologist.  My PCP said last week on 8/6/19, “I don’t know why you have so much pain and why it’s lasting so long,” so he referred me to an ENT and a Neurologist.  The orthopedist referred me to a Neurologist.  My research about Bell’s Palsy does not reference pain nor does it say that the illness extends down into the neck.  I have an upcoming appt w/ a Neurologist. 

Every health care professional has talked about my immune system and that it must have been weak and compromised.  I think that makes sense since I got really, really sick 4x while I was 37 years old and then my house got really sick this past Spring with 4 water leaks and two room remodels in the basement bedroom and upstairs bathroom, which caused me a lot of stress. 

I’ve learned about a new kind of pain through this experience.  I cannot find an accurate word to describe the pain I’ve endured.  Nerve pain is a whole different category of pain that anything I’ve ever experienced and I’ve broken my tailbone 2x and given birth naturally two times.  The words I’d use to describe the pain from this medical situation are debilitating, crippling, excruciating, terrible and awful.  I’ve said my skull pain feels hot, sharp and like my brain is burning.  My left neck hurts so much and feels so tight.

After just a few sentences of sharing my story with the ENT, he interrupted me and said right away, “You don’t have Bell’s Palsy.”  My eyes opened wide.  He said, “You have Ramsey Hunt Syndrome.”  I finished my story and he said that Bell’s Palsy is only facial paralysis and that Ramsey Hunt Syndrome also has facial paralysis but also has severe pain that encompasses everywhere that the Trigeminal Nerve covers, which is the left skull, left ear, left face and left neck (or the right side). 

So, here is what I learned from him and from my research online-

-Bell’s Palsy can last 2 weeks to 6 months.  RHS can last 2 months to 2 years.
-Bell’s Palsy may be caused by the herpes virus.  RHS is caused by the varicella virus.
-Bell’s Palsy is rare.  RHS is very rare.
-Most health care professionals have heard of Bell’s Palsy.  Usually only ENTs know to diagnose RHS.
-Neither are contagious. Both should go away.
-Diagnosis of both Bell’s Palsy and RHS has the same immediate medicines, 5 days of steroids and 10 days of antivirals, that I took.  RHS though includes nerve pain medication from the get-go normally. 

Therefore, yes, if I had been given the proper diagnosis of RHS in the ER on 6/15/19, then I could have started the nerve pain medicine right away and not experienced the deep levels of pain and fear over the past 9 weeks.  I would have known to expect the pain and where I would feel it.  I’ve been so scared wondering why I’ve had so much pain and what was wrong in my neck, but now I understand that RHS is painful and covers the Trigeminal Nerve area.  However, the past is in the past and we cannot change it, so I can just surrender now to taking this nerve pain medicine to manage this RHS until I get better.  Honestly, I feel relief with this RHS diagnosis because I understand what is happening to me now.

I’ve realized how crazy viruses are too.  We can’t control them.  Viruses live in many of us and can cause the most unheard of illnesses to some. 

Thus, a basic way to explain what I have, according to the ENT, is Shingles in my inner ear that caused damage to my Trigeminal Nerve, which resulted in facial paralysis and extreme pain. 

While I have better facial movement and can smile & show my teeth now and move my eyebrows, my left check is still quite swollen and my left eye has not improved much and so I have to take good care of it so that it does not dry out & get damaged.  I also need to be careful of the wind since that hurts my ear and eye.  So, I look pretty normal and I do not feel normal, yet. 

I’ll end with some lessons I’ve learned from a book I am reading for my work’s Book Club called Dare to Lead by Brene Brown (I highly recommend this book and this author).  While explaining empathy and living into our values, she said her mom taught her something growing up: Show up for people in pain and don’t look away (p. 192).  Um, yes.  She also has an exercise that helps people define their two top values in life and how to live into them, so mine are LOVE and GRATITUDE. 

Thus, thank you for the love and support given to me with this medical situation since mid-June.  My summer of 2019 has sucked, that’s for sure.  Being 37 was hard, that’s for sure too.  My birthday was just 8/12 and I pray so hard and have hope that being 38 will be a year of healing, resilience and tranquility.  I am so grateful for all of you who have loved and supported me after the Bell’s Palsy diagnosis and now with this RHS diagnosis.  I love you all back so much.  I’ve appreciated the calls, texts and emails, the meals, visits and flowers, the prayers, offers of help and the books.  Thank you from the bottom of my heart and know that my heart is warmed and overflows with gratitude and love from and for you all. 

May we all have peace,

Susan

PS- Since people have asked what they can do for me, I will share that I really like getting snail mail.  I’d love a letter from you, maybe with a bumper sticker.

Bell's Palsy email update to my colleagues at work on 8/8/19

From: Susan Smith
Sent: Thursday, August 08, 2019 3:34 PM
To: 

Dearest,

I’ve been gone from work for 8.5 weeks now and I really, really want to return.  I miss working so much.  The question remains though as to when I will be ready and the answer is still the same.  “I don’t know.”  I would not be able to do the job yet as I am still struggling with this Bell’s Palsy.  It seems I got/have a really bad case of it.  I am now very medicated taking many pills a day of different medicines.

I want to thank you both for being a journal of sorts for me with this experience.  It just came to be that this Bell’s Palsy is a sever and long case, so my weekly updates are now many and I’m grateful you two involuntarily have been the recipients of my emails. 

This past week has been very up and down with two bad days on Sunday and Tuesday.  I had so much pain on Tuesday I did not get out of bed except to go to my general doctor for the 4^th time.  My back left skull, left ear and left neck still hurt and they were killing me on Tuesday.  The doctor said my left ear looks normal and that he does not know why I have so much pain and why the pain is lasting so long.  That was hard to hear as he’s the 4^th health care professional who has told me that Bell’s Palsy normally does not cause so much pain nor for so long, so that leaves me wondering if I have something else going on and that’s scary, confusing and frustrating.  He did more bloodwork and is testing me for a long list of random things, so I’m waiting on those results.  He told me to increase the Gabapenton, the pain medication, sigh.  He recommended I got to an ENT dr, but the dr he recommended I go see is out-of-network and we have 0 out-of-network benefits. 

Then, the orthopedist I saw 2 weeks ago recommended the MRI of my neck and my insurance has denied it 2 times, so I’m waiting for the dr to do a peer-to-peer review. 

Mary from our team came over on Sunday night for a quick visit with two meals that included salads & desserts, so that was amazingly delicious.  That was so nice and generous of her.

People would not know I have Bell’s Palsy just by looking at me now because I have almost normal facial movement.  My left eye is still not normal, but I can now smile and show my teeth. 

I’m trying to process the trauma of the day I “got” Bell’s Palsy.   The left ear pain, feeling the spasm behind my left ear while driving, my left face going numb and becoming paralyzed, Jimmy driving an hour in the mountains to an ER at a small hospital, getting a diagnosis of an illness I’ve never heard of and all that has happened since… has all been very hard. 

Dare to Lead by Brene is a great book and I’m enjoying her authenticity.  I’m coming to understand vulnerability and like her definition of when we put ourselves out there not knowing what will happen.  Gosh, that’s how I feel with these emails to you guys.  I just read the part about curiosity and thought so much of our Discover Calls.  I recently read the part when she got a concussion and related immensely as she described how hard it was to be forced to take a break from work for some self-care due to a medical thing that’s out of our control.  In the empathy section, she describes emotional literacy as being able to name 30 emotions that a person feels and I was able to name 12.  I really like the section about confidence and related her explanation of practicing foundational skills in order to become an expert to be spot on for my job as an EC. 

Monday is my 38^th birthday and Fall B.  My boys start school next Friday the 16^th.  It’s an important week and I am hoping with all my might that I have a good week so I can return to work soon.  I repeat, I want to return to work so much.  I am so eager to attend the Stand-Ups again because those informal times together are so professionally intimate that many positive emotions result. 

Thank you for being colleagues who I can trust with these reflection emails and I sure hope to see you both… soon.

Chao,

Susan

Bell's Palsy update to my colleagues at work on 7/29/19

From: Susan Smith
Sent: Monday, July 29, 2019 10:50 AM
To:
Subject: 7/29 check-in

Hi,

It’s been a little over 6 weeks now since my life changed with this diagnosis.  July is almost over and busy times approach in August with school starting for my boys as well as soccer and piano.  Gabriel starts middle school in 6^th grade and Philip will be in 3^rd grade.  Jimmy’s mom leaves on Friday and Jimmy’s will work lots of OT in August.

No, I’m not better yet.  I really wish I was, so much.  People keep asking me if I’m better and when I will return to work.  It’s hard telling people that I’m not better yet and I don’t know when I will return to work.  While I have more facial movement and I almost look normal, I do not feel normal and that is really frustrating.  The pain in my back skull and left ear persist.  Bell’s Palsy sucks.  This sucks. 

Last week I went to a new doctor and they took some x-rays that turned out good, but they want to get a MRI now of my neck and spine since I’ve had lots of pain in my left neck and my left arm & left leg feel weak (and that’s not symptomatic of Bell’s Palsy).  What if I have a pinched nerve somewhere that is causing all of this?  I asked that doctor, “When will I know that I can return to work?” and he said, “You can return to work when you can make it through a few days in a row of not having to rest and not feeling pain, and you can make it to bedtime still feeling energetic.”  I’ve not had that happen yet.  And I want to add in, “while not on medicine.”

I’ve been inconsistent with the medicine because I don’t like taking pills.  I’ll take the medicine and then feel okay, so I stop taking the pills and then feel bad, so I start taking the pills and feel good and then stop taking the pills and feel bad.  A cycle.  So, I’m going to be consistent w/ taking the medicine for a while.  But, I will want to feel good off of medicine because I would not want to return to work while I’m medicated and feeling good, then stop the medicine and feel bad again and have to leave work again. 

Geez this is so slow. 

This is my last week of sick time.  Isn’t it amazing that I was able to take 7 weeks of sick leave?  I’m so grateful.  I mean, I did not work in July and will get a full paycheck for July.  That’s amazing.  Then, I have 4.5 weeks of vacation time.  Gosh I hope to return to work in August.  It would be very hard to still be on FMLA in Sept and not get a paycheck.  Plus, I miss interacting with so many awesome people, from my colleagues to the students we serve.

Typically, I am a positive person and I know you guys know this, but I admit this is just so hard and such a struggle, physically and mentally.  I want this to go away and I want this all just to be a memory.  Soon.  Now!  But, this is slow and extremely frustrating. 

I really miss you, all of you, our CSU Global family.  I’m cheering on the Enrollment team for Fall B, esp since it starts on my birthday. I’m really hoping turning 38 will be a new, good chapter in my life.

Oh, and I’m listening to Dare to Lead by B Brown on Audible.  So good! 

Susan

Bell's Palsy update to my colleagues at work on 7/19/19

From: Susan Smith
Sent: Friday, July 19, 2019 1:18 PM
To:
Subject: 5 week check-in

Hi,

Tomorrow marks 5 weeks since I went to the ER and I write with an update.

I am officially out on FMLA now and have sick time up through 8/1, then I’d have 4.5 weeks of vacation to take if I need it. 

I had previously said many times, “We get so much paid time off at CSU Global that I’d never be able to use it all unless I have an emergency.”  Here I am in the midst of an emergency and I give thanks for the FMLA and time off. 

I’ve been to an acupuncturist and she said I have, “the worse and most painful case of Bell’s Palsy I’ve ever worked with” and she specializes in the nervous system.  I’m also going weekly to a chiropractor and he said today that, “of the 100 cases of Bell’s Palsy I’ve treated, you have the strongest and most intense case I’ve seen.” 

I feel like it was getting worse and worse each day for the first 4.5 weeks and then the past few days have been like a plateau of not getting worse or better.  This just feels so slow.  It’s also confusing to feel like I have a “good” day and then a few “bad” days.  I hope I am now on the part of the plateau in which I get better and better each day.  

Life really can change in a single moment.  I had never even heard of Bell’s Palsy and then I get diagnosed with it.  I’ve never really thought of my nervous system and now it consumes my thoughts.  

I’m sure you want to know when I will return to work and I will tell you both that I ask myself this question constantly.  When will I be “ready” and I don’t know, so there’s no answer right now.  The research says Bell’s Palsy can last 2 weeks to 6 months and I get a lump in my throat when I think about being out for 6 months.  I want to come back now and yet I do know I’m not ready, not even close really. 

I will take this weekend to make a decision about returning by my 38^th birthday and Fall B, both of which fall on the same day of August 12^th.  I will communicate with you two as soon as I can early next week so you know if we need to give my Fall B pipeline away… too.

I feel I should apologize that this illness is taking so long, but I admit I am not in control at all of my body’s response and this illness, which is a humbling realization because I want to believe I am strong.  However, I admit there is so much going on physically and I am also now starting to address the mental aspects of all of this too.

I promise I will come back to work as soon as I can.  I want to ensure I am ready for the demands of working 8 hours a day and recognize I will need to rebuild strength on all levels before I return because I am very weak right now.

CSU Global is such a part of me, my life and my identity.  I miss it all so much - you guys, everyone, the work, the job, the students, the processes, everything. 

Caringly,

Susan