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

Bell's Palsy update to my colleagues at work on 7/10/19

From: Susan Smith
Sent: Wednesday, July 10, 2019 10:23 AM
To:
Subject: one step forward, two steps back

Hi,

I’m writing early this week for my check-in because I already don’t think I will make my desired return date of Monday the 15^th.  Boo.  I’ve been feeling a lot of anxiety about not making another deadline and worrying about returning to work before I am ready, so I want to let you know now instead of waiting until Friday. 

I’ve literally been in bed for 3.5 weeks and think I will need some more time for the pain to go away, then for me to gain some physical & mental strength back so that I can return to work and be able to do the job 40 hours a week on the phone and the computer.  I mean, I’ve not left my house for almost a month except to go to the dr a few times. 

So, instead of putting another hopeful date, I may just leave it open as to not pressure myself and give false expectations for all. 

I’m really sorry.  This is so hard.

The MRI came back normal.  My brain is okay.  That’s good.  I still have a lot of pain though and that’s not good. 

Gabriel asked me last night, “Do you miss working?”  I said without hesitation, “Oh yes, very much so, especially my colleagues, my friends.”  And it’s very true, I miss you all so much.  I really miss the stand-ups and daydream about them regularly. 

I thank you all again for being so great and helping me in so many ways.  I received the team’s card and that brought me so much love and hope that once again my heart overflowed with gratitude.

With care,

Susan

Bell's Palsy email update to my colleagues at work on 7/5/19

From: Susan Smith [mailto:susan.smith@csuglobal.edu]
Sent: Friday, July 05, 2019 11:07 AM
To:
Subject: July 5th check-in

Dear,

Well, I am writing to communicate I am not ready to return to work on Monday, July 8^th (L) and will hope I will be better by Monday the 15^th to return.  While I am slowly getting better, slowly, I still have pain and spend most of my time in bed.  I have some facial movement and the pain is less, but this is turning out to be a very slow, slow, slow improvement process.  It’s been so nice to have Jimmy’s mom here this week and she’s been super helpful (she was a nurse).  So, that’s that and I really miss you all. 

Thank you for your support.  It helps so much to not have to worry about work and know that CSU Global is full of wonderful, caring people.

Susan

Bell's Palsy 6/29/19 update to my colleagues at work

From: Susan Smith [mailto:susan.smith@csuglobal.edu]
Sent: Saturday, June 29, 2019 11:24 AM
To:
Subject: end of June check-in

Hello,

I am writing to check-in.  

I was diagnosed with Bell’s Palsy two weeks ago and the past two weeks have been one of the most difficult experiences of my life in terms of pain.  It seems there is a broad spectrum with Bell’s Palsy in terms of duration and intensity.  This second week was worse than the first because the relentlessness of the pain was debilitating.  I’ve learned so much about the power and depth of pain.  While I know it could be worse, the only way I can describe this illness for me so far is “pain.”  And, I know it could be worse.  I tell myself I will get better.  This will go away.  For now though, this has been a terrible and horrible time for me, crippling.

The flowers that CSU Global sent me are right by my bed and they comfort me.  I cannot do much due to the pain, so I often just lay in bed and stare at the flowers.  Thank you again for the beautiful flowers that continue to bring me gratitude. 

I’ve been so bad that I went to the dr again yesterday and they pumped me up with some super powerful pain medication, which I both hate and appreciate.  He also suggested getting a MRI to see what’s causing so much pain as well as maybe see why my left arm and left leg are getting weak, tingly and numb.  I mean, did I maybe actually have a stroke and the Bell’s Palsy is a false diagnosis?  So, I will likely do that this weekend if it gets bad enough at an ER or wait until next week for an out-patient MRI (my preference).

I share this with you all to help you explain that I may likely not return to work on July 8^th.  There’s no way I could work if I am then as I am now.  I cannot even take care of myself, nor my kids.  My boys have been staying at my parents and my mother-in-law arrives today from CR for five weeks.  I’m completely dependent on Jimmy and my parents for… almost everything.  So, if not July 8^th, then my goal will be July 15^th, which I really feel like will be more realistic.  At this time, I do not think I could return to work on July 8^th.  Oh sob, that sucks.  I miss you guys and I miss working.  I miss DCs and registering students, I do.

OK, give my love to all at CSU Global and please extend my gratitude for the support I’ve received from so many.  I like receiving cards in the mail… 3450 West Alamo Place, Littleton, CO  80123.  You have my permission to share info about me with others.

Keeping hope close,

Susan

Bell's Palsy 6/21/19 update to colleagues at work

From: Susan Smith [mailto:susan.smith@csuglobal.edu]
Sent: Friday, June 21, 2019 10:36 AM
To: 
Subject: Surrendering

Hello My Dear Colleagues,

Ok, I surrender.  My Bell’s Palsy is spreading and getting worse.  I’m in a lot of pain and I can’t control the hurt away.  I’m going to a dr today at 1pm and then to a Neurologist on Tuesday. 

So, I just requested sick-time until July 8^th and hope to return then.  If I’m not ready by then, let’s hope for July 15^th.  I’m so thankful for the abundance of sick-time we get here and having such a supporting team.

I’ll stay in touch still and maintain hope I will start to get better soon.

OK, hold down the fort and I miss you all,

Susan

Month 2 of Bell's Palsy

7/19/19 - 6 weeks

7/23/19 - 7 weeks

7/31/19 - end of 8th week

7/25/19 - 8 weeks

2 months - 8/14/19

First month of Bell's Palsy

Week 2 - 6/26/19

Week 2/3 - 6/29/19

Week 3

Week 3 - 7/1/19

End of Week 4 - 7/11/19

Week 5 - 7/13/19

One month - 7/14/19

Week 1 of Bell's Palsy

Day 1

Day 2

Day 3

Day One of Bell's Palsy - in the car after the ER

Email to my friends - Bell's Palsy - 6/16/19

My dearest friends,

I'm writing to tell you that I was diagnosed with Bell's Palsy yesterday.

I'm sure you can Google "Bell's Palsy" just like we did yesterday because I had never heard of it. Basically it is caused by a virus and it causes sudden swelling and quickly attacks the facial nerve on one side of the face. It results in paralysis and mine is the left side of my head. 

My left ear has been hurting since Wednesday and I've struggled with a headache all week. 

We went camping this weekend at Eleven Mile state park for Father's Day. I was driving yesterday morning to the other side of the lake so that my kids could go fishing and all of a sudden, I felt a painful spasm behind my left ear and my left face went numb.  I slammed on the brakes and looked at Jimmy, he saw my face and we quickly switched driving and he then took me straight to the ER in Woodland Park, an hour away. It was a very scary drive because I thought I had had a stroke and the boys were in the backseat crying the whole time.  

I have so much to be thankful for and one is that I did not have to wait at all in the ER and they were able to get me in the cat scan machine very quickly. I am very grateful for the nurse who quickly told me she did not think it was a stroke. I'm grateful they were able to quickly start me on the medicine, which consists of an antiviral medicine that I have to take for 10 days and a powerful steroid.  I feel gratitude that they were able to release me from the hospital after a couple of hours.

So we drove back to the state park, got our tent and drove home last night and I'm in bed.

I cannot close my left eye and so I have to sleep with a patch on it so that it does not dry out. I need to constantly be putting in eye drops.  I cannot pucker to drink and I drool when I eat.  I cannot suction my mouth closed to brush my teeth.  I cannot smile. I sound like I mumble when I talk. I cannot taste.  My ear hurts really badly.  My head too still.

My brain is fine and I can walk.

I will be okay though and the effects can last 2 weeks to 6 months.  This is a very rare thing and in even more rare cases it can be permanent. 

I do not know when I will be able to work. 

I am thankful for my parents who came over last night to see me and they came and got my boys this morning and will keep them until tomorrow at least.

So, it could be worse.  I have insurance and access to good medical care with effective medicines and so I must be hopeful.  I have a caring husband and brothers... and you.   I admit this is very scary, disconcerting, uncomfortable, painful, weird and unsettling.  But, it won't kill me.  So I count my blessings and I have many. 

Ok, love,

Susan 

PS - I removed FB from my phone a week ago, finally.