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.