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

Accept & Grace: New Year's Resolutions

A few years ago my New Year's Resolution was "Simplify." That was the year that the Railroad furloughed us twice and for several months we had no job, no unemployment, no insurance, no money for food, no help, two ER visits, robbed 3 times (another later), and moved several times. It was the year my face and head pains were bad, swelling on top of my head, hair falling out in bald spots, irregular heart beats, and dizziness, nausea, fatigue, and vision problems for both my husband and me. IN ONE YEAR. We almost lost everything twice. Each time I thought we'd maxed out our blessings and credit cards, someone angelic would be inspired to help us and we would have enough to hold our heads just barely above water. We didn't ask for a lot of help (except for the two places we knew you go to for help and were pushed off to wait). Let me tell you WHAT! S-I-M-P-L-F-Y was exactly what I got out of that year.

Last year my focus was, "Hope, Health, and Happiness." HELLO! It was the year from H-E-double-hockey-sticks. Satan used torture I hadn't ever experienced before-even in my dreams. I had never before had worse hope, health, or happiness those first few months than I've had all the other years I've lived. And yet, I'd also never had more help in many different forms from angels here on earth or the other side of the veil. I had more hope in some areas that then spread like a blanket over the suffering, darkness, and cold of all my trials together. I've always believed there is a God. I've known him, to an extent, even as a little child. I believe in His omnipotence, omnipresence, and omniscience. What I've struggled with (my whole life) is trusting that He wants me to have the desires of my heart and happiness NOW instead of just in the next life. It's easy for me to see others needing help, being lovable, having their dreams come true, and being a 'work-in-progress.' But, for me I have always expected perfection. I have had a twisted sense that if I do EVERYTHING right, THEN I get blessings. If I have struggles, it is because I haven't done enough. (Again, not that I think that for anyone else. It's simply my knee-jerk reaction and muddled thought process.)

I used to think that GRACE was some ambivalent word that was hard to grasp. In a matter of speaking, I figured it came down to:

ME (gives 85% good, 15% bad choices).
  +
CHRIST (gives 100% good, takes on my 15% bad).

=100% good after Judgement Day. Good enough to move on up. Check.

I.E. Christ makes up the difference.

Christ DOES make up the difference, but not in a check list or gigantic good vs. bad righteousness scale. I don't think it will come down to a situation where God is sitting in a massive, floating bench with a gavel, Christ with a checklist counting off all the good deeds I did compared to all the bad things I did/thought/said/etc and angels in the courtroom biting their nails waiting for the number analysis of an enormous spreadsheet. I thought as long as the number of good is even just ONE above the other, those pearly gates will open. My young brain imagined a scenario where IF I repented of 100 bad choices (wiped clean), decided to not use the gift of Christ's atonement on 98 bad choices, and only made 97 good choices, then the total comes to 1 extra bad choice more than the good. BANISHED. No Celestial Kingdom for you. Shoot. Close one. (This is a gross oversimplification, but the simplest way to explain it.)

What I've come to realize is that justice and mercy are both vital to judgement and the next chapter of our souls. There is no doubt that the ONLY way back to God is THROUGH CHRIST. But, there is so much more to the equation than JUST Judgement Day.

GRACE here is less than a checklist of actions, but more of  WHO I BECOME WITH the help of CHRIST. He makes up the difference not only AFTER I've done everything I can, but DURING each and every step and choice I make. He walks with me and even carries me at times when I simply cannot move an inch. He provides comfort to my screaming daughter who simply can't understand why her mother can't hold her. He takes my disabilities and makes it a good thing for both of us. He helps me find resources and inspires me with methods to communicate with my husband when talking is too excruciating. He takes away some of the pain OR fills me with more strength to keep going with each prayer offered by me or on my behalf by someone else. His grace is what makes up the difference all along the way. And all of my missteps, falls, and weaknesses He can make better as long as I accept the help. Instead of beating myself up for not being enough until I reach my death bed, I can be kinder to myself and allow Him in.

Brad Wilcox (who is super nice, btw) explained GRACE as an analogy of piano lessons, which I'll apply here to my own life:

My dear aunt Liz paid for me to take piano lessons when I was young. We only had the simplest keyboard for me to practice on and I loved it. When I started learning chords, I went to the church to use their piano. Then my mom paid for piano lessons and we got a real piano. The lessons got harder and my love for the piano waned. Brad explains that Christ's arrangement is like a mom who provides music lessons for her child. Mom pays the piano teacher. Since Mom pays the debt in full, she can then ask her child for something--> practice. "Does the child's practice repay Mom for paying the piano teacher? No. Practicing is how the child shows appreciation for Mom's incredible gift. It is how <she> takes advantage of the amazing opportunity Mom is giving <her> to live <her> life at a higher level. Mom's joy is found not in getting repaid but in seeing her gift used-seeing her child improve...If the child sees Mom's requirement of practice as being too overbearing," (for example: Mom! Why do I have to practice? None of the other kids have to. I just want to pass this level on my video game!), the child may not yet see how this improvement will benefit her/him so much more than video games. "Practice isn't punishment or payment, but change."

In the same way Jesus paid justice and requests, "Follow me," (Matt 4:19) and "Keep my commandments." (John 14:15) (His Grace is Sufficient, Brad Wilcox)

Elder Bruce C. Hafen has written, "The great Mediator asks for our repentance not because we must 'repay' him in exchange for his paying our debt to justice, but because repentance initiates a developmental process that, with the Savior's help, leads us along the path to a saintly character." (The Broken Heart [Salt Lake City: Deseret Book, 1989], 149; emphasis in original).



This year I actually did some research and decided my focus is ACCEPT and GRACE.

My placards expired in December. In 2016 I had a lofty goal of NOT being so disabled by the end of 2017. Psha. After breaking one placard and the other flying out the window (I was trying to get a fly out and instead my placard flew away), I decided to accept it. Not the fly. I just accepted the handicap assistance. 

This is my year to ACCEPT that I've got to figure out various ways to do ordinary things. I am the exception to many physiological rules most people's bodies abide by in their 30s. This simply provides me more opportunities to decide what really matters and sometimes see what some may miss. I've had some great chances to grow, learn, simplify, find hope, focus on health, and realize where true happiness lies.

BUT. . . . IF this year of acceptance and grace turns out to be another year from Hades, then by George, 2019's year of focus is going to be CRUISE.

Invisible

This year has been intense; a year full of torture, hope, despair, love, weakness, support, strength, inspiration and invisibility.

I used to hide my MS because I didn't want people treating me differently. The first 5 years I had no idea why my issues with vision, hearing, intestines, pain, nausea, or fatigue existed. Sometimes I'd have cognitive issues, balance problems, walking slips and then at other times it wouldn't be an issue. There was a level of shame I couldn't shake. Looking back, I can see the heat intolerance, exacerbations, smaller relapses due to triggers, and the diagnosis all along. In 2002, I got the results from my spinal taps that I had MS and I was happy for about 30 minutes. I had an answer. All of my weird health issues had a reason. I wasn't alone with a disobedient body. And then reality sunk in a bit deeper and I was dismayed. (Full diagnosis wasn't made until later when brain lesions showed up). Even with a diagnosis, I continued to hide my disease as much as possible and carried shame for being different or needing any type of help.

Once I got pregnant, my health declined more rapidly. Each year I've continued to decline, especially the year my neurologist wouldn't listen to me and I had my worst exacerbations. I lost more of me becoming more invisible as a person all while my MS became more visible. I tried the hermit life, avoiding help or even much social interaction, because once again I had no answers as to why the weird things were happening. I felt like I needed to just push through the pain and odd symptoms just like I had the previous 15 years. But this time I simply couldn't deal with it on my own. I HAD to have help. I was left with confusion and shame because I couldn't deal with normal things like the laundry or going outside at all. I didn't want to be an inconvenience to anyone. Instead of acknowledging a need for a cooler environment when I was away from home, I would give up my vision, hearing, slow working intestines, and eventually normal nerves all to not stand out. I didn't want to be excluded, invisible, forgotten, or a topic of conversation. In time, though, people stopped asking me to go places, because they figured I couldn't go anyway. Since I never knew when I'd have a bad day versus a good day (physically), most people assumed I always had bad days. This is all completely understandable and not cruel, but simply a result of the unpredictability of MS. As my MS-created Trigeminal and Occipital Neuralgia took the spotlight, I shoved myself under the stage to become a spectator "underground" in life instead of playing an active role like everyone else I saw. It seemed like my world kept stopping while everyone else kept moving along.

This past year was the peak of my invisibility. When you can't talk, smile, laugh, or do anything, people want to help you avoid as much pain as possible. I didn't realize how much I smiled, even at strangers, or talked just at home. Not being able to communicate makes others uncomfortable and is frustrating, to say the least. Soon many people just avoided me so the facial/head/ear pains wouldn't spike. Or I hid away and avoided contact so as to quash any uncomfortableness (my depression and anxiety were factors as well). The pain never disappeared by avoiding, but they were attempts to make the pain less pronounced or frequent. However, the slight absence of pain translated into silent nothingness. It is WORTH the pain at times to talk, smile, laugh, and interact with others because doing nothing is the slow death of a soul. Awkwardness and pain were at times worth the connection with others. I imagine when we look back at our lives we will also say, "It was worth the pain."

I have gained a greater appreciation and love for those who cannot communicate. My pain has mostly moved into bearable levels. I've adapted and use different ways to communicate. I've learned to be okay with awkward and to hide away less. I'm still greatly limited and have to be careful. But the shame has been replaced with strength. I've also decided that the only one who wants me truly invisible is Satan. They say, "No man is an island," but Satan would love to put each of us on a scorching hot island surrounded by sharks of despair, isolation, shame, hopelessness, and feelings of inadequacy or being unloveable. He would wrap our entire self-worth in our position, reflection, surroundings, and material possessions.

My island is hotter and smaller than yours. 

I haven't received rain, like you have.
My clothes are tattered and torn. 

I can see you in the distance chilling in a hammock between those gorgeous palm trees, 
sipping coconut milk with a hand carved straw, laughing with someone named Wilson. 

Therefore, I am a loser. 

Also, how'd you make that straw?

In Matthew 13, Jesus talks in parables but I find an applicable depth in more than just a spiritual sense. He talks about seeing, hearing, healing, understanding, treasure, pearl of great price, separation by the angels, and SHINING vs wailing and gnashing of teeth. While only parts of this apply to me spiritually, there is a great deal that physically applies to my 2017. Physically after my failed minor brain surgery, as the anesthesia dolorosa, trigeminal, occipital and geniculate neuralgias took over, there was a good amount of wailing and gnashing of my teeth. Literally. haha

God doesn't want us to hide away, alone, in a corner of our suffering and odd mixture of pride and shame. He wants us to turn to Him, follow Him, give our burdens to Him, and SHINE. He will make weak things become strong, lift us, and walk with us through our struggles. HE may be invisible to our mortal eyes, but WE are not invisible. We don't need a super power of invisibility. We need to understand our own power, coupled with God, to be visible and allow Christ to shine through.

This past year I have understood things like never before. I have felt a closeness to those on the other side of the veil that I've never experienced before. I have decided to shake off my cloak of invisibility and step into the light. And thankfully the wailing and gnashing of teeth is minimal these days. Hallelujah.