Email to my work's leadership confirming time off - 12.21.20

 

12/21/20

Dear,

I am writing to confirm I need to take the month of January off for medical reasons. 

My hope is to return to work on Monday, Feb 1^st, good to go to rock on in 2021.

To briefly explain, my nervous system still needs to heal.  I suffered a sudden facial paralysis in June 2019 and my body has not healed from the damage caused by that virus attack.  I plan to use January to see a new Neurologist that specializes in the facial nerve on the 7^th and then invest time & space daily to healing.  The nervous system is extremely important and out of our control in many ways, so I need some more time and space to focus on healing. 

Finally, I want to affirm I am a dedicated CSU Global employee.  I’ve worked here since March 2015 and I want to continue to working here.  I want to make it extremely clear that I do not ‘want’ to take January off, rather I ‘want’ to work.  However, I must respect my body and acknowledge that my health is not very good and so I ‘need’ to take this sick-time and short-term disability time off. 

I will miss you all.  I love CSU Global.  Thank you for allowing me to take this time to have the space to work on healing.  Happy holiday to all of you and yours and may 2021 be filled with goodness for us all.

Sincerely,

Susan

Email to my work's leadership about taking off more time from 12.7.20

 

12/7/21

Dear,

I am writing to unfortunately share an update on my health.

It’s been a year and a half since my trigeminal left nerve suddenly was attacked by the Shingles virus that caused facial paralysis and I’ve not fully healed.  In fact, I am suffering day to day with the pain still.  The left side of my head that was paralyzed continues to feel pain all day every day, in particular my left eye and ear, my left scalp and throat, my left face.  The left eye is the worst, since my left eye’s vision is blurry and thus causes me sharp left temple headaches daily.  I am secretly taking Ibu & Tylenol daily just to stay upright and logged in.

I finally allowed Jimmy to make an appt and take me to an eye doctor appt last Tuesday, who prescribed me two kinds of eye drops to help with the pain and promote good health.  However, yesterday I developed a purple spot on my left eye lid accompanied with more pain.  See attached for pics.  I’m grateful the eye doctor was on call yesterday, on a Sunday, and he told me to stop taking the two eye drops and said he does not feel he can help me.  He said my problems are not just related to my eye, but to my nervous system and recommended I go see a Trigeminal Nerve Neurologist at University Hospital and gave me their contact info.

Sob.

So, I have to decide if I should start over again with doctors and go through this all again like I did when I was out in 2019 for seven months on medical leave.  Or, continue to try to live with the pain.  I admit, I cannot continue to keep staring at a screen 40 hours a week as I am now.  I’ve even tried wearing an eye patch while I work and it’s ridiculous.  These blue blocker glasses are not doing anything either. 

I really wish HR would buy me a cordless ear piece like I had for my right ear so that I could stand up and walk around while I’m on the phone.  Sitting here staring at this computer eight hours a day is SO bad for me.  Like, SO SO SO bad.

I am taking the week of Dec 28^th off as vacation.  I have an idea.  Would you support me?  What if I took off the two weeks after my vacation as sick leave so I could go to this specialized Neurologist.  I would take that time to try and heal and figure out a way to do this job with this medical issue.  If it is determined I cannot return to work after two weeks, I would go on short-term disability until I could hopefully return to work healthily or go on long-term disability after 90 days out.  FMLA maybe again?

Sob.

Here is a Stand-Up I hosted in Feb 2020 with My Story, in case you want to take 30 minutes to watch and understand more about what happened to me.

I’m 39 and feel young, but I may be permanently disabled.  I love my job and I love working for CSU Global.  I do not want to quit.  However, I have a serious medical situation with my nervous system that is preventing me from living a normal life and I feel quite devastated to write this email.

In conclusion, I repeat, would you support me taking the first two weeks of Jan off from work? That would mean I would not contribute to Winter C, sob.  I hope I can make it until then, as I may even have to log off early today due to the bruising of my left eye and the pain.  I’m trying to… push through though.

You have permission to tell whomever you need as I am an open book regarding this situation.

Thank you for being with me as I deal with this unfortunate medical situation,

Susan

Email to friends and family - It’s all about love, gratitude and kindness

I am writing to share an update about my health. 

I went to the ER seven months ago today.  That date seems so long ago, as if time has gone by slowly.  I remember reading about my first diagnosis, Bell’s Palsy, and learning that it could take up to six months to get better.  I never thought back then that I would still be struggling with this illness in 2020.  Then, I remember reading about my second diagnosis, Ramsay Hung Syndrome, and being told by the Neurologist that this could take months to years to heal.  It’s hard to accept that I am still sick and not better yet.

Although, I am getting better.  I’m not healed yet, though, but I am healing. 

A good sign, no, a great sign is that I’m back to work.  I returned to CSU Global last week on Tuesday and received the warmest welcome from my colleagues.  It felt good to connect with people I’ve missed so much and who expressed how much they had missed me too, with abundant offers of support and help.  I’m taking it very slowly as I transition back to the routine so that my body can continue to heal.  I would not want to have a relapse.  I’m so thankful I can work full-time at home and that my employer allows some flexibility for me to readjust to having a work schedule while still going to a few weekly medical appointments. 

So mentally, my spirit is up and I am filled with gratefulness.  I affirm that life is all about kindness and being kind is all about love and gratitude. 

Physically, I am stronger, have less pain and able. 

However, I admit I still have a long way to go.  The virus really destroyed a lot of my nerves in my left scalp, skull, ear, face and throat.  All of my five senses were thus effected.  Even though the facial paralysis got better after a few months, it takes a long time to regrow nerves and rehab muscles.  My left ear’s hearing is still recovering as is my left tongue’s taste buds and my left nostril’s sense of smell.  The hardest part to heal is my left eye because the six muscles that move the eyeball and affect our vision are very precise, so I still have eye pain from eye strain and blurriness.  My final comment about my body is about the pain I really continue to have in my left ear that barely seems like it is easing up.  I am not in bed anymore all the time though and people won’t know there is anything ill with me by my appearance. 

On a good note, I stopped taking the nerve pain medicine in mid-December.  While I give thanks I had access to such powerful medicine, I am grateful I am off those pills because they really effected my brain.  I still can’t believe I was taking nine pills a day.  Now, I utilize herbal eardrops and CBD oil when my ear pain is intolerable. 

Also on a good note is that my yoga practice is consistent, powerful and nurturing for my mind, body and soul.

I started doing physical therapy with a company called zHealth over a month ago that focuses on the nervous system and that’s been very helpful to rehabilitate my muscles and stimulate my nerves.  I also started about a month ago getting five lidocaine shots in my upper left back/neck every two weeks to help reduce the pain. 

I’d like to give the biggest shout-out that the human language allows me to express to my dear husband.  Jimmy has been extremely loving, supportive, reliable, selfless and comforting throughout this whole illness.  My boys have also amazed me with their resilience, understanding, protectiveness and even patience.  My parents have been present, dedicated and supportive.  My brothers too have been affectionate, caring and helpful.  I have so many friends to honor too and I thank each one of you who has been with me over the past seven months. 

While sick, I read a book called “The Art of Hearing Heartbeats” over the summer and there is a paragraph that I remember that influenced my perspective on life.  It explains how every single human being experiences illnesses, injuries and accidents.  Either directly or indirectly, either short-term or long-term, either minor or major, it is human to get sick, get hurt and have health issues.  This is important for me to realize because it reminds me that hardships are to be expected and I must remember that I can survive most problems that arise.  Most importantly though, I think being there for others when they are in the midst of an illness, injury or accident is vital to our survival.  Life has pain and we can help each other endure.  Love gives hope to those who are sick and hurt.  Again, it’s all about love, gratitude and kindness, especially in times of need, pain and suffering. 

I conclude this update with the simplest reflection from my experience over the past seven months.  Human connections help people make it through life’s challenges.  Whether with a stranger one time, with a friend tons of times or with family periodically, connecting with each other by expressing love and gratitude is the kindness way we can support each other between our birth and final breath. 

Namaste,

Susan

#RamsayHunt
#RamsayHuntSyndrome

Email to work colleagues about returning to work - 2020

Dear,

I wish you three and us all a smooth 2020.  For me, good riddance to 2019.

I had a wonderful Christmas season with my family and am so thankful I could spend time with them.  

I went this week on Tuesday to get the five lidocaine shots in my upper left back & neck for the fourth time, which seem to be helping and so I have my fifth appointment in two weeks to repeat. 

My left eye continues to hurt and my vision’s blurriness worsens, so I went to an opthomologist today and he found bacteria living on my eye lashes.  This could explain the pain and worsening vision, so I will start antibiotic eye drops today for a month.  

The pain from this illness is less and more tolerable, although I acknowledge it is not gone.  I still feel pain in my left ear, skull and neck/throat every day.  But, I’m living with it.  I am still healing.  I am getting better, slowly.  I must say though that I am not healed completely nor totally better. 

I have a few doctor’s appointments next week that I was not able to get done by the New Year.  

My gratitude to my employer and you all is more profound that can be expressed in words.  The gratefulness I feel radiates from my heart and brightens my face.  Thank you.  Thank you.  Thank you.  Thank you CSU Global.  Thank you HR.  Thank you for your patience, understanding, tolerance, support, loyalty, flexibility and care while I lived through the hardest year of my life personally and the worse illness of my life.  I am so grateful for the stability of CSU Global and my colleagues during the past seven months. 

See you all soon,

Susan

La Familia Lopez Smith’s 2019 Reflections for our Holiday Card

La Familia Lopez Smith’s 2019 Reflections for our Holiday Card

This year has been full of amazing accomplishments and difficult hardships.

For the second year in a row, Jimmy’s eldest brother, Wilmer, visited us in February.  This time, he came for a full week with his wife, Yesenia, and we spent three nights at Granby Ranch Resort in the Colorado mountains.  The boys skied every day and one night while the ladies went snowshoeing on top of a mountain along the Alpine Ridge Trail. Wilmer learned about the art of CO breweries.  We all visited the Air Force Academy and Garden of the Gods too.

We had to give our cat, Princeton, away to a friendly neighbor in February because of Susan’s allergies. 
We miss him so much.

Over Spring Break, Susan and the boys flew to Chattanooga to visit “big” Philip and his beautiful wife, Lindsay.   We went to the historic Raccoon Mountain and famous Rock City.  We ate fried chicken and walked across the famous Walnut Street Bridge over the Tennessee River.  We went to Chickamauga National Military Park on top of Lookout Mountain and learned about Civil War history.  We had a “wild” time too staying at their off-the-grid cabin in the hills of Appalachia.  The Smokey Mtns are so pretty.  “Little” Philip enjoyed being with the person for whom he’s named.

Our home had four water leaks in the spring that resulted in us having to redo much of our basement including the guest bedroom as well as the upstairs bathroom. 

Jimmy applied for and earned a promotion to be a Geospatial Data Tech II for Xcel Energy for the electric team.  He is currently on a special project supporting the gas team because he’s an expert is “gas.”  He continues to run along the South Platte River when he can and he’s been reading some leadership books.  Jimmy is the cook of the family and provides delicious dinners during the week and breakfasts too on the weekends. 

Jimmy’s mother, Abuelita, visited for five weeks during the summer.  She and Jimmy went to the top of Pikes Peak.  Abuelita took good care of our home, our yard, the plants, the boys and Susan.  Her career was in nursing.

Gabriel is 11 years old, in 6^th grade and enjoys middle school so far.  He walks to and from school with some boys from our neighborhood and enjoys that freedom and independence.  He’s in honors Language Arts and Math and his electives so far have been PE, computers and Spanish.  Gabriel got a mountain bike for his birthday in May and loves riding it around the neighborhood with friends.  He’s in his 6^th year of piano and likes playing rag songs by Scott Joplin.  He wrote a composition in the spring that won a state contest.  Gabriel continues to be an avid reader and loves books by Rick Riordan (who wrote Percy Jackson).  He also loves fishing now too.

Philip is 8 years old, in 3^rd grade and still plays for the Penguins soccer team.  He continues to be a smart math student and has gotten into going to the skate park with his best friend to ride their scooters.  Philip is in his 3^rd year of piano and is also in his 3^rd hymn book.  We recently finished the Fablehaven series that took us almost two years to make it through the five big books.  We are now on to the next Fablehaven series called Dragonwatch.  Philip also loves reading Big Nate and The Hardy Boys.  He likes Scooby Doo too and watching movies.  We went camping for his birthday at the Arkansas Headwaters Recreation Area State Park with four families.  

Susan’s had a hard year.  She was falsely diagnosed with Bell’s Palsy at an ER at a hospital in the mountains when the family was camping at Eleven Mile State Park over Father’s Day weekend because her left face suddenly became paralyzed.  She was then re-diagnosed with Ramsay Hunt Syndrome (Shingles in her nervous system that caused extensive nerve damage) by an ENT and Neurologist in August because of the severe pain.  Susan has not worked since mid-June and is hoping the pain will subside so she can stop taking all the pain medicine and return to work after the New Year.  She’s grateful for her yoga practice that sustains her as well as having read Crucial Conversations and Dare to Lead (by Brene Brown) for her work’s bookclub and The Art of Hearing Heartbeats for fun.  She’s also very, very thankful for the love and support from her parents and brothers as well as her loyal friends.

We wish you a safe and healthy holidays.  We are hopeful for a good 2020 for us, you and our world. 
We also hope you write back sometime in 2020 so we can connect about life. 
May we all love one another.

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