Friday, June 10, 2016
|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
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
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
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
Thursday, June 14, 2012
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
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..