A year later and maybe I should EXFOLIATE MY EYE to appreciate everything!

Most anniversaries are a wonderful time to celebrate beautiful memories. But sometimes you have wretched anniversaries filled with sorrow that tear down that calendar of memories. Often the uncertainty of the future haunts us into a paralyzing defeat.  I have to confess that instead of celebrating how far I've come in a year, I focused instead on the challenges I still face. Sorrow instead of celebration. Wretched. I tried thinking of what has improved in a mere 365 days. I considered what I can do now WITHOUT pain that I couldn't do this time in 2017...very little. When my neurosurgeon explained that most anesthesia dolorosas heal in 1-3 years, I expected at least 1/3 of my face/ear/head affected would be much better. I only have 2 teeth, a part of my nose, and a small part of my face by the incision point, near my mouth, that are no longer numb and constantly burning. But, it often feels like my teeth are wired shut on top of the surrounding teeth being yanked out, front teeth kicked in, tongue stinging and lips burning. Thankfully the level of pain is dramatically less than it was a year ago.

I'm sick again, though, like I was in January and February of 2017! I have the same type of thyroid compression issues, asthma, and especially a cough that aggravates the anesthesia dolorosa, occipital, and trigeminal attacks and makes sleeping more difficult. For several days I was depressed and angry, truth be told. On the night of my 1 year anniversary, I accidentally got a microbead from my face wash stuck in my eye. My right eye. I stood in the shower with the water hitting my face much longer than usual, blinked like crazy, later continued flushing out my eye, and eventually the pain stopped moving around. The pain was just in one spot and I figured I had scratched my eye since the pain didn't dissipate. Curse those tiny plastic microbeads that are supposed to "exfoliate!"
Exfoliate my eye.

Halleluja for modern medicine and doctors who can see you in a day! Also, steroids for the eye vs for the whole body are SO much easier to deal with since there were zero side effects. Oh YEAH!

My problem was bigger than that, though, because since I was blinking more and more the stabbing pains in and around my eye greatly increased. I was mad. Why can't I be a normal person where you scratch your eye and that is the single place that hurts? Blinking too much causes a feeling of a little knife stabbing and kid hammer hitting to morph into a sledgehammer and machete inflicting pain consistently all around my eye. Plus the eye scratch. C'mon. Isn't there a song that goes, "Pain, pain go away, come again...never!!!"

The last day I remember being free of pain was the beginning of 1998. I've felt like I have the flu, ran a marathon, pain throughout my body, varying levels of vertigo, and vision and hearing problems every single day since 1998. I haven't had a month of level 1 or 2 on the pain scale since 1991 or 1992. I've now had MS for MORE than half of my life. Humph. Woe is me. Boo hoo.

After about 14ish hours of that dang eye, I decided to go to an ophthalmologist to see if I could get some type of eye drop to reduce the pain or help me blink less. Turns out that whole time the microbead attached to my cornea and wouldn't release. At first she looked at my eye in a blue light. But then she switched it to a white light. She and I were both shocked to realize I STILL had the sneaky, sticky invader in my eye! She got a tool from another room and I don't think I've ever been more happy to see a metal tool coming straight for my eye. Is it ironic that 365 days earlier I'd had a hollow needle inside my skull and face?!?! Only a year and a day earlier I'd had that needle begin burning the V1 nerve and affecting my eye, which was when I woke up screaming. Ironic or symbolic or something-ic seems almost hilarious now. Once the microbead was released I could almost breathe better. It's amazing how broad the physical effects are on the body, let alone the psyche.

It was then that I realized how ungrateful and ridiculous I had been. I had been viewing the past year in a blue light and mood for several days. There have been some miracles that weren't exactly what I'd prayed for or expected throughout the year. But, they were miracles nonetheless. Had I forgotten them in just a few months? I have had a great deal of blessings and improvements, for which I'm incredibly grateful. I have shared some of the miracles and spiritual experiences with some people and some with no one except for my dear husband and parents. I do know, without a doubt, that God lives and loves us. I think I agreed before this life to take on the pains and struggles I have. I'm not 100% sure I knew how tough it would be, but I knew it would be worth it. Impossible alone, but eternally rewarding as long as I didn't give up on God. There have been a few times where physically I regressed and I prayed, "I'm NOT strong enough. Please, God, I can't do this." But thankfully I've had help and He carried me through the fire. There's still some smoldering ashes along my path, but at least I can see through to this side of the flames.

Sooooo, what has changed in a year?

First of all, financially we are SO much better off than we were this time last year or even the last several years!!! It is wonderful and I hope to help others like so many have helped us!

Physically these are the things that I have been able to do or have improved:

• My depression level has alleviated dramatically. I can see living now much more than I could in January and February last year. 
• My pain level has gone from a 10 or 9 to a 4-6 most days. My pain levels basically break down like this: 
• Pain level 10
• Anesthesia Dolorosa (Jan-Feb 2017)
• Pain level 9 (Jan-Feb 2017)
• Occipital Neuralgia 
• Trigeminal Neuralgia
• Geniculate Neuralgia
• Pain level 8
• ON/TN/GN (March-April 2017 and off and on since 2014)
• Pain level 7
• Day 3 of child birth after water broke
• Pain level 6 
• Stabbing, failing gall bladder
• Broken arm for 3rd time in a year when it sloped down like a valley and two nurses had to snap it back in place
• Cysts breaking on ovary
• AD/TN/ON/GN when anti-seizure meds are off or I've done too much
• Recovering from surgery (gall bladder, C-section, endometriosis) and you cough
• Pain level 5 
• MS pain, fibromyalgia, and maybe pneumonia 
• Sometimes AD/TN/ON/GN
• Pain level 4
• Most of my days anesthesia dolorosa is around a level 4, especially in the mornings. As long as I'm on schedule with my anti seizure meds and haven't done too much.
• Hour 12 of something stuck to your cornea
• Pain level 3
• I don't remember
• Pain level 2 or 1
• When I was a child

• 3 times in December I was able to shower without even feeling pain for at least 5 minutes
• When I cry (which isn't that often), it no longer feels like acid is running down my face
• A handful of times I've been able to drink something hot or cold without pain
• I can sing a line or two with little pain
• Sometimes I can hum and the rattling of my teeth is okay
• I can drive some
• I can talk with someone for about 1.5 hours spread out throughout the day with ZERO pain
• I can laugh a bit with NO pain
• Wind isn't nearly as painful
• I can eat most things without problems
• I have trained my body to sleep on my back, thus reducing the hip and shoulder pain from earlier in the year
• I no longer am embarrassed by how I look on any level. It's kind of freeing. 
• I very rarely twitch or need to use paper/pen or sign language to communicate anymore!!
• I am LIVING again and the pain and uncomfortableness bothers me less. You can't tell by looking at me, more often than not, that I'm struggling. I've developed skills and tools to help me get through the days.

And most important of all, spiritually I have improved by

• Finding more HOPE, FAITH, and LOVE than I have ever understood or felt before in my life
• A deeper relationship with God and Christ
• Miracles
• Deeper relationship with 'angels' here on earth and on the other side of the veil