Friday, June 10, 2016

5 years! 

It's been a couple years since I updated as things are pretty normal for me.  Yeah, I look different than I did 5 years and one day ago and I do things a bit differently but life has moved forward.  I am happy to report no real set backs for me over the last two years.  I am back to working a full load and enjoying life's many twist and turns and ups and downs.  Just keep moving forward folks, make adjustments, and never give up!  Not a lot of time for writing so will update with pictures this time so you can see, it does get better.   Thinking of all my RHS friends and sending them all healing good thoughts!  

For my new RHS friends, to read the beginning of my journey look for the June 2011 post. The first one was titled "I have what?" , like most of you, they told me bells at first.  They were wrong..  as the story goes for so many of us... 
Me last week on vacation!  
Me a few days into RHS nightmare

My husband, youngest son, and I on vacation just last week.  :) 

My husband, youngest son and I on vacation the week before RHS hit me!  

Tuesday, June 17, 2014

It has been 3 years and 7 days! Life has moved on. I took that BIG trip just a week ago. I had a blast. My grandchildren saw me mostly normal. :) The knocking in my ear has gone for the most part. I have learned to know my limits and when I am near my limits it is all about controlling what is going on, stopping and listening to my body. The tooth is still moving around due to crazy nerves, (causing me to look like Nannie McPhee, I have some crazy things going on with the muscles in my arms and legs, not sure if it is related or not but will find out. The past 8 months I have a recurring rash on my arms. Have seen a couple of doctors and neither know what it is. But the steroid cream/spray seems to keep it at bay so that's what I use.

I am so thankful to have healed so well. My thoughts and prayers go out to everyone I have met with this nasty common thing called RHS. For anyone just coming down with it, if you are tired, REST, if you think it will never get better remember that MOST people make a near full recovery! The reason for my blog at first was to keep my mind working, it got me out of the bed, it kept me from wanting to hide from the world. I have too much to live for to just give up. Now, the reason I keep posting every so often is to LET people KNOW it really does get better for some of us. No, I am not 100 % but I am HAPPY, I am loved, I love, and life moves on one day at a time. You can contact me anytime with questions. HUGS to some very special people out there and they know who they are!

I can't update the many faces of Ramsay Hunt but will try to get a new picture of me up soon.

Monday, June 10, 2013

2 years!

Can you believe it was two years ago today. Life has kept going, healing has taken place, and so much learning how to cope with pain that may end up being life long. A pain, that I will not let CONTROL my life. I will live my life and hope I am able to help others in some small way to repay the kindness of others who have helped me along my journey with Ramsay Hunt Syndrome.

There's not a whole lot to report health wise. Everything is about the same as it was 4 to 6 months ago. I still have to take 1800 MG of Gabapentin daily to control the nerve pain both in left side of face and right side of rib cage/back area. Lucky it doesn't seem to make me sick or change my moods anymore. When I first started taking it was another story. For a couple months I was very short fused and always sick to my stomach but it was worth all that to control the 24 hour pain I was in.

I'll share pictures just to see how much better things are face wise. But Ramsay effects so much more than just what you can see looking at me. There's many folks out there dealing with the same thing or something like it every single day of their life. Some days I feel almost normal other days, I wake up and think, do I have to move from this spot? But move I do! Life is full of choices to make. No one can control what choices you make but yourself.

The days that the pain is the worse, I find things to comfort me (even if they don't stop the pain), my favorite blanket, my amethyst stone, my camera (yes taking pictures is a comfort and a joy), doing Katas in my mind, reading, watching a good movie, taking a walk, getting a reiki treatment, so many things I have found help. The list of things is to long to share and some of the things would just make you say, how can that help? Maybe the fact that I was sick one summer, then my sister-in-law came down the kidney cancer, then the next summer my mom had a knee replacement (so we could take a long trip this year) and she almost died has made me stop and take every single day as a Blessing. Pain or no pain, life is HERE and NOW. I will not let RHS or anything else that is a medical issue for me control my life. It may change the way I do a few things but I will still DO IT.

I will end my 2 year post by saying "Keep it real, keep it simple, and let go of the things you can not change, live your life, be happy, enjoy your family, don't let whatever it is hurting you CONTROL your life". We haven't taken that long trip yet, but we will. It will not happen this year but 2014 is just around the corner and OFF WE WILL GO! One more step to MOVING ON. :)

Updated my many faces clip. But I can't get it to work. So maybe it will show up later.

Friday, February 8, 2013

MORE! You are kidding, right?

Back in Oct. of 2011 (just 4 months after RHS hit) I went to the family Dr. for pain on my right side under the rib cage and traveling to the front and back. I had dealt with this pain for MONTHS, planned my rides at Disney based on what would not HURT what I thought was maybe a bone spur in my back or ribs. He kindly told me it was shingles and related to me having RHS. I thought he was nuts because I had RHS on the left and still had not seen one SIGN of a rash like you hear shingles folks have. He offered pain bills. I turned them down and went on my way. Using the heating pad to control the pain and always being super careful of what I did.

Months later I had another flare up. Went in and with the pain and other issues we thought maybe Kidney related. So had CT scan. It showed that I had enlarged kidney and had passed a kidney stone in the last few days. So it was written off as kidney pain and I was given meds for infection. It seemed to help.

Months later another huge flare up. (I have the pain every single day, but when what I call a flare up happens it is all I can do to get up BUT I do get up. I work EVERYDAY. Last time I took a sick day was in 2011! ) This was around Nov. 2012. Saw another Dr,. in our office and she felt sure it was gall bladder and sent me for U/Sound right away. Calls me and says, you have an enlarged liver caused from eating fatty fried foods. I almost laughed at her. Yes, I am a big girl, and sure I do not eat healthy. BUT fried foods happen only a few times a year. Anyway, she said she would call me in pain meds. I made it clear I WAS NOT wanting pain meds. I want to find out WHY I hurt! What on earth is causing this pain that takes my breath away. I was a bit unhappy with her and the way she treated it as my weight issue. I wish I was the size I was back in 1982! But ya know,that's not happened and I don't see it happening and I still can kick her in the head so there! So I used the heating pad for days and got the flare up under control by just taking it super easy and resting when I could.

2013 rolls around. After a wonderful Saturday spent with the family at the mall I spent all of Saturday night flat on my back moaning as I slept. James woke me and wanted to take me to hospital. I said no.. Sunday morning he had to help me get up. I screamed in pain, could not breath with each movement we made. James and Curtis spent the day taking care of me. I sat on the sofa with my heating pad 10 hours! Only getting up for a trip or two to the bath room. I decided I had to find the problem and get this taken care of. I am only 45 and can't live in that type of pain.

Saw my Doctor the next week. Again, he tells me it is shingles related. WHAT I said! I have not had a rash at all. He tells me he is pretty sure I have nerve damage and that he needs to send me to a neurologist. He gave me a script for gabapentin which is used to treat nerve pain.

So after three days of the meds (very low dose) I can tell a difference. Who would have thought a Doctor just might know what he is talking about! Two week later I am moving better than I have in years. Still can not sleep on my sides but I can get on the floor and back up with my kiddos much better so I am happy.

I saw the neurologist this week. He confirmed I have Postherpetic neuralgia which is nerve damage from shingles both in my right side and my left face. He scored my face lower than the ENT does but hey I can live with a off looking face but the PAIN is another story. He is increasing my meds in order to get it where I am able to sleep on sides and where I do not have the pain in between doses times.

So let me advice everyone who ever had chicken pox as a child.. TAKE TIME for yourself daily, keep your stress levels under control, learn how to deal with the ups and downs of life and not hold so much in. Stay as healthy as you can. My shingles outbreaks were brought on from two things. I had uncontrolled diabetes for a year or so and I was taking on to many things and did not have any down time. Shingles can and does attack anyone of any age. That commercial about over 50 is full of crap! I am guessing my first shingles attack I was 40 years old. That how long the pain in my side has flared up. It attacked my face at 43 years old. Shingles vaccine is only for people over 50! Also, DO NOT ignore pain. I have a very high pain level and just put up with it often. Well, had I gone in when it first started on my side, I would have been given the correct meds and would not have PN now.

With all that said, LIFE is good. I am overall healthy, I work, I am happy and well loved, life goes on. It's all about how you handle your journey. One day at a time and moving forward always.

Wednesday, January 9, 2013

Tomorrow makes one year seven months since Ramsay Hunt Syndrome came and paid me a visit. The other day, I was looking at pictures of a trip we took with our grandchildren in 2009. There was a picture of me that stood out. My teeth were normal looking, my smile was even, my eyes opened the same amount, and I didn't see pain in my eyes. I shared the picture with my facebook friends. To most everyone they say I look the same, but they don't see everything. For that I am thankful. It means I am healing, I am still me, I am still normal Angela, even when at times I feel anything but normal.
I am very lucky to not be HIT as hard as many other who have had RHS. I am a member of a couple of support groups and some of them never work again. Some have to be on major meds to help control the pain. My heart breaks for them. Some are younger than me, some older but most people think shingles only hits people over 60. Shingles is what can cause Ramsay Hunt.. Ramsay Hunt syndrome is an infection of a facial nerve that causes a red painful rash with blisters and facial paralysis. But please NOTE, not everyone gets the blisters and rash. I had one pimple type bump a week before my face fell and I would have never dreamed it was the start of what feels like a nightmare at times.
How do you get shingles you wonder? Well, if you had chicken pox as a child, the virus "sleeps" (is dormant) in your nerve roots. In some people, it stays dormant forever. In others, the virus "wakes up" when disease, stress, or aging weakens the immune system. After the virus becomes active again, it can only cause shingles, not chickenpox.
So after seeing my 2009 picture I was asked by a dear loving friend what was different. That to her I was still just Angela. She didn't see what ever it was I see. It is super hard to explain to someone. I try not to complain, I try not to dwell on the low days and I focus on the good days. So first I will share the GOOD news. I am alive, I work 55 -58 hours a week, I am able to get up and get going with no help from anyone, I can blink again, I can read some (large print) again, I am MOVING ON (which is what I made my mind up to do on week 15 or so of this journey)!
As to what is different.. Where do I even start? We will start with looks, my chin is pointed on one side, my teeth have shifted and I now have a Nanny Mcphee tooth, my bite is no longer correct so eating is a chore (not that it stops me from eating, LOL) , the left eye is opened a  bit wider than the other, my nose pulls to the left and tends to fill flat on that side, my face never relaxes on the left it is frozen and the skin feels kinda weighted down on the bones, my smile is not the same but I have learned how to do a small smile that looks a bit more normal. My face gets really red on the left and has a burning feeling when I get to tired or sick. My eye closes much slower than the other so if grease pops up LOOK out, or if the sun is super bright that eye can't shut it out quick enough, same thing with shampoo and such. My hearing is super sensitive, my thought process has been effected, my speech is back to normal unless I am tired and then it is like all screwy again... My face can't take changes in the weather, to much cold makes it hurt to much heat makes it hurt.. Its a deep constant pain.. I have to pace myself now and can tell when I have about over done it. I keep hoping the fatigue thing will get better but so far its about the same. My pucker is still funny looking. Drinking, brushing teeth, kissing all feel different and forget whistling or blowing bubbles. I have "twitches" at times that I can not control. I deal with vertigo a couple times a week mostly at night, when I need to get up and forget to do so slowy. The knocking in my ear happens less and less but is super strong if I am the least bit sick!
Gosh, that's enough of all that whining! Life is good and health wise I am okay just have some problems (don't we all). Some ask what keeps me going.. Well, first and foremost my love of life, the love for my children, grandchildren, husband and my mom. If I gave up, I would be MISSING so much of their life and well, life is to short for that! I did want to give up at times. You can see that in my blog. But I couldn't let my family down like that. I am very thankful for my friend Mo, who really woke me up to letting go of what I can't change. I can't even tell you just what she said to me. I went to her for two or three Reiki treaments and after each, I felt peaceful and ready to face whatever came my way. I refuse to let these little issue I have define me. I am MOVING ON! Update again in 5 months or so when I hit the 2 year mark..  Here's my updated clip of MY MANY FACES OF RHS. 

Thursday, June 14, 2012

It's been a year!    Today is June 11, 2012. One year and one day after I first came down with RHS. Or from the time the major stuff really showed up. As I look back over the past year and the couple of months before I got sick, I recall signs of it coming on. But who thinks about a pimple in the nose or about why am I so tired as signs of illness coming on?

 I am happy to report that life does keep going, you do have good days, awesome days, fair days and even bad days as we take on life with RHS. My doctor didn't tell me the effects would last so long. He did tell me the nerves could take 2 years to heal. But does this other stuff ever go away? Or will I always need to pace myself? Will I always need to find a way to handle stress, will my face always tingle when its cold or when I feel bad.   Will sounds always drive me nuts and will the touches of my children and husband always hurt the left side of my face? How I want to be able to have my grandchildrens little hands on that side and not cringe.. Of course they have no clue how it feels when they touch that side.. Mawmaw just keeps going.. But I miss the NORMAL feeling of my face.

  45 years old and sometimes I feel like I am older because I try to make sure I am in bed and sleeping by 10 in order to make sure I get 8 hours of sleep. But overall I am healthy and happy and doing well!

  I hope reading of my journey helps some of you put your mind at ease and take things one day at a time. All the worry in the world will not help you get through RHS, it will only slow your healing down. .Lessons I have learned: let go of the things we have no control over, ask for help when needed, be thankful for each and everyday! 

here's the slide show of scary pics..  lol

Thursday, October 6, 2011

Almost 4 months

Here I am guys, almost at the 4th month mark.  Never would have dreamed something not life threatening could effect my life so darn much.   As I look back over the pictures and remember how hard it was to just get up and greet the day every morning for the first few weeks of RHS I am so thankful for my husband, Curtis, and my mom..  Without them, I would have crawled into a dark room and just wasted the past 4 months.  But as sick as I was, life went on.  Curtis darn well grew a foot, his voice got deeper, his hair longer, and grew so much as a person.  I am thankful I was able to be apart of everyday life without just hiding and giving up. 

Super excited as so much has improved in the last month.  Hopeful that the last bit of nerve that is damaged is healing and this time next month I will have more good news to report. 

The worse things now is the tiredness, my ears (super hearing HURTS like hell, just saying),  the eye running and the sunshine hitting the eye..  You really don't have a clue how much blinking HELPS in everyday things.. LOL 

Today's pic...  :)   the first one..  with a smile..  looking at the pic.. its just the corner of the left side of my face that is frozen.  that nerve goes all the way from nose, mouth through my ear.. 

no smile..  just how I look walking etc..  I don't think anyone can tell the eye is a bit bigger. 
hahha flash back picture.  My smile was so cute..  the hair cut. well...  LOL 

Sunday, September 11, 2011

3 month picture

so this is it.. LOL   still not normal but I have been told no one said I was ever normal..  :)