Sunshine ALL the time makes a desert

"Sunshine all the time makes a desert." -Arabian proverb

As more and more of my senses disappear and pain takes its place, I've been thinking a lot about how figuratively my senses seem to increase. I know it makes no sense, but let me explain.

The less I can physically see, the more I see of what really matters in life.
The less I can physically hear, the more I try to listen and hear from above instead of the chaos around me.
The less I can physically feel, the more I feel emotionally and spiritually (if I allow it).
The less I can physically taste, the more I re-evaluate what I take in.
The less I can smell...well, I was born without a real sense of smell. I have never smelled flowers, rain, dirt, or much of anything. But I do have a killer sense of intuition and can smell dishonesty and sneaky things pretty early on. Maybe before we came to earth I traded 3/4 of my sense of smell for an increased dose of my 6th sense.

Truth be told, the more time goes on, the more my surgery has made things worse for me. I now constantly feel like someone is kicking in my front 4 teeth and someone is yanking out my lower jaw & teeth and someone won't stop punching me in the face. Some of the burning has been replaced by stinging (tip of my tongue and a spot by my chin switches between burning, stinking, and aching). I still can't really hear out of my right ear. I struggle immensely talking, yawning, eating, etc because it increases the stabbing and burning pains. I also thought not being able to taste things very well would be great for me! I'd lose my desire to eat and lose weight. While I did cut down on things I ate, I didn't lose weight. AND lately I've wanted to eat more to try to taste more like I used to. These are new issues and not the end of the world. It's the constant pain and wondering if there is any relief on the horizon that has been the issue.

BUT, I've been TOO BLESSED TO BE STRESSED. (I'm still operating at about 98% happy 2% depressed). Anytime I feel like I have reached the pinnacle of my pain & suffering, someone lends a helping hand or words of encouragement to lead me away from the edge. It has been amazing how inspired many of my friends and family have been. They have been my sunshine in my dark, dark days.

In a few days it will be GROUNDHOG day. This is folklore that says if the sky is CLOUDY when the groundhog emerges, Spring is around the corner. However, if it is SUNNY, the groundhog sees his shadow, retreats, and Winter persists for 6 more weeks. 2-2 is the day and many people can relate more to the Movie than actually watching Punxsutawney Phil explore his world. Isn't it almost comical and twisted that if it's cloudy, good is coming soon? And if its sunny, instead of enjoying the warmth, the groundhog retreats and coldness ensues? Maybe my life is a little too much like both Punxatawney Phil and the movie, "Groundhog Day." My lessons of numbness, loss, and pain repeat and repeat and repeat and repeat...you'd think I would have learned my lessons to move on to the 3rd. haha. The 3rd of February, by the way, is the day I meet again with the neurosurgeon. I have held onto this day for almost 2 weeks now. Boy, do I have questions!!!

Growing up in the desert, I didn't thoroughly experience all 4 seasons like many others in various parts of the country do. Some plants and animals have adapted to survive in the desert, but as a whole it's dry, dirty, and not as full of life as other biomes. Sometimes we may hate the cloudy, gloomy, darkened days environmentally speaking and mentally speaking as well. BUT, because of the rain, we get growth. We appreciate the sun. The light at the end of the tunnel, in a matter of speaking, breaks through into our view. We all have seasons in our life and they will pass. Sometimes the rain lasts so much longer than we anticipated and the damage that it can cause may seem insurmountable. We may not even feel the sun or see the sun, but it is always there. 

So, for the last 2% of my struggle (which may never fully disappear, because honestly these new trials are tough). I'm going to do a 2-2 challenge for myself and invite anyone interested in increasing their joy, gratitude, and LIGHT into their lives, I'd love to walk the journey with you. 

Starting on 2-2, 2 goals for the soul til 2-22. 
Write, record, picture, whatever---2 good things that happened that day. 
Something good for the body. (Same thing for 22 days).

My dear friend, Rebecca shared, while fighting a huge battle with cancer, "TOO BLESSED to be STRESSED." Connecting with others and focusing on my many blessings has saved my life and greatly reduced my stress. I decided to take matters into my own hands and shake off the last 2%. Maybe it will work, and maybe it won't. But I've got to try to increase the light and joy in my life, since so much has been sucked out. I may not be able to do so much of what I used to do that brought me peace and joy. Snowboarding, traveling, photography, camping, swimming, humanitarian work, visiting family, throwing parties, scrapbooking, walking, or even little things like reading or writing sometimes. There may be VERY few things left in life that physically bring me joy or relief. But, I do find joy in each day. Typically it is my husband, daughter, family (parents, siblings, cousins, aunts, uncles), and friends. However, it is usually focused on others and rarely on me. So, I'm going to take more time to focus on not just BARELY getting by, but on filling ME up. 

I'm not going to shirk from the shadows. I'm not going to mope around in gloomy weather. 

Goals for 2-2 to 2-22: EVERY DAY:::
1) Picture or journal TWO things that reminded me of God's love or made me happy.
2) 20/20 for clearer vision: 20 minutes reading scriptures & prayer with 20 minutes of stretching or yoga or visualization depending on my strength and abilities. (I will also be fueling my body with WFPB and decreasing my refined sugar intake). 

This is my "Joy" box I've filled since college of sweet messages from friends or family.
Bring on the LIGHT, SUNSHINE, and JOY!

Tortured to Death and Here Goes Nothin'

People have been asking me how I've been doing since the surgery. I know many people have been praying and fasting for me. So, I've wanted to give great news. But, I've had bad news, so I haven't updated that many people to the full extent.

I feel like I'm slowly dying by being tortured to death.

I think I'd be awesome at being interrogated. I should be a handicapped spy somewhere for the government. haha

Sleep deprivation? (More than before, TN, ON, MS, surgery)
Teeth yanked out? (TN, more after surgery)
Fingernails/toenails ripped off? (Left big toenail, MS)
Stabbed with knives? (TN, ON, surgery)
Electrocuted? (TN)
Bugs crawling all over? (MS, TN, surgery)
Stretched skin? (surgery)
Burning? (surgery, MS)
Pain induced nausea? (MS, surgery)

I may be in the training phase for something big. At least, that is how I'm viewing it now. haha (I just do little laughs now.) =)

I feel like I've been hit in my face with a truck. My lips constantly burn. I feel like my mouth has been wired shut and each time I talk, cough, yawn, eat, or laugh, I'm ripping something open. My husband and daughter had a bad cough before my surgery and I thought I was being so blessed because I hadn't caught it. I usually catch the worst version of anyone's sickness around me and it takes me 3 times as long to heal from it. I knew I couldn't have the surgery with an acute illness, so I figured that meant I was being watched over and the surgery would be a huge success. Then I got the sickness the day after my surgery (or maybe the same day). And the surgery didn't work on V1 of my trigeminal nerve (my worst pains). AND now I feel like I have an ear infection to boot. I've been shocked at how numb I am, but how much pain I feel in the same area. I feel like I have half a helmet on because my face, ear, and part of my head feel so hard and like it doesn't move when I lay to the side. I feel like tiny bugs are crawling under my skin in two parts of my face. I feel like little evil minions are stabbing me with little daggers. AND I still have trigeminal neuralgia attacks. I struggle eating so much more now, so I mostly eat soft stuff on my left side, where I have more trigeminal neuralgia attacks. When I cry, I try not to touch my eye to wipe away the tears. I just let it fall.

The first day I was so depressed. In the first 5 minutes of surgery I thought so many things. I didn't think I'd want to die MORE after surgery than before. Half of it didn't work and the other half seemed like it worked so well that I have pain from the numbness. Was this how it would always be? If this was the case, I can't have the other side done. So, now I made things worse. Before when I would laugh, talk, brush my teeth, eat, or whatever where I opened my mouth too wide, I would have intermittent pain that would then leave an aching, less severe attacks to follow. It wasn't ALWAYS the case, because sometimes I would be okay. The attacks were becoming more frequent and more severe, but I always had some hope of taking some medication or procedure to fix it. Or sometimes the trigeminal or occipital neuralgia wouldn't hit immediately after moving. Sometimes I could do those things without feeling like I'd pass out or wanted to bash my head against something hard to knock myself out. Now, however, it is always there. In my mind, this was our last hope---the medications weren't the ticket, so this was it. I didn't learn until the morning of the surgery that for some people this only helps for a few weeks. Then what? I think an open rhizotomy was the next step but I wasn't sure if that was where they permanently kill the nerve? Or was it the severing the nerve or radiation? Either way, that wasn't supposed to be until many years down the road. The thought of being back on that surgical table awake with the moving needle and screaming out in pain and then my body twitching and me moaning in hopes of it stopping makes me never want to do anything again.

I have struggled taking care of my sweet lil 4 year old! She hates to be alone watching TV while I try to lie down. I thought I wouldn't be "that" mom who has her kid watch TV. But, these days she's getting a good dose of PBS. She doesn't like most of the food I offer. I'm desperate enough to ask, "Cheetos? Please just eat some chips!" I thought I'd be the mom teaching all kinds of skills, dancing, loving, kissing, holding, and more. She screams and cries that she wants me to stand up to hold her. But, I'm lucky to hold her while sitting on the couch, wincing in pain when she wants to kiss me or her head accidentally bumps my face now. I have her watched by family a few hours from here and she sobs (huge sobs), "Why can't I come home? I miss you sooooo much. I sick too! *fake cough, cough" (Although later she did get a cough, so then she really couldn't understand why mom's sick and at home and she wasn't). I've stopped talking to her on the phone now because I can't handle it. I feel like I can't do the basic things I should be able to do. Is this how my life will be forever? Will there be no end to my suffering?

I have contemplated a lot of my struggles over the past half of my life (19 years). I had 100% surety that the surgery would work, miracles happen, and prayers are answered. I've seen it in my life several times. I haven't ever had this many people praying for me at once, so I was sure everything would be easy. I had all the faith and hope a soul could carry. But, now I felt like those little minions were chipping away at my face and soul. The truck that slammed into my face was squashing me past recognition. What was the point of all of this; the point of my life?

3rd day of life finally opened eyes and began sucking

When I was born, my body was black from lack of oxygen because of the umbilical cord wrapped around my neck. The Apgar test on a newborn shows how well the baby is doing (things like heart rate, breathing, reflexes, skin tone, muscle tone, etc). 10 is healthy. 0 is dead. I was a 1 *ONE*!  I got a priesthood blessing and they knew I'd live. For 3 days all I did was open and close my hands. My parents were told that IF I did live, I'd be in a vegetative state. Then on the 3rd day of life, I opened my eyes. I went on to walk, talk, and thrive! Miracle baby! Then when I was 18 or just barely 19, my body started to crumble a bit. Ever since then, my body has been incredibly sensitive to anything foreign. Surgeries are ALWAYS extremely hard on my body and because my body is always attacking itself, recovery takes much longer for me. If there is a side effect or issue with a medication, toxin, or procedure, I seem to get it. (Even those not mentioned on documents and the nurses or doctors do research and find a rare report that I fit. This is the case even with silly things like fluoride varnish, for example). Some people have strong spirits and weak bodies when others have weak spirits and strong bodies. Either way, a big part of being here on earth is to learn to master our bodies and spirits. I sometimes fall into thoughts of disliking or hating my body. But I'm again reminded that my body still does some pretty cool things that I should be grateful for and didn't recognize enough even two weeks ago! Lately again, I've wondered if it's just my destiny to be a burden and in a vegetative state.

...I digressed too much...

This past week I have thought too many times, "Why didn't I just die when I was born?" I know it's not a good place to go, but it's where my mind went. When my husband and I formulated a plan to have others watch my daughter, I thought, "What is the point of me being her mother if I can't mother her?" As my amazing husband cooked, cleaned, helped me walk to bed, my daughter "snuggled" me into bed, ran to get an ice pack while my husband got me a throw up bowl and held me while on the toilet in our tiny little bathroom, and my vision was coming and going, I thought, "Why am I here? Why are answers to prayers, "No" or "Not Yet?"

I have tried to live my life with so much patience, optimism, hope, faith, strength, and following the commandments. I have done things every week even when they are painful and difficult. Daily I still laugh, but I laugh small. I express love and appreciation for my daughter and husband. I remind my daughter every night that "Mommy loves you. Daddy loves you. Jesus and Heavenly Father love you." My husband says that I'm his best friend and the best wife. I don't nag, complain, tear him down, correct him, am intimate each week, loving, grateful, patient, thoughtful, and listen well. He reminds me that he wanted a companion, not a maid or a housekeeper. Someday when we have enough money, we can have that taken care of, so I don't feel like such a failure and burden. He says he's lucky. I've been given special blessings that tell me I have a vital role here on earth, especially with my daughter. But, I don't feel it. When she was a baby, I had to have my amazing sister change her, dress her, hold her, put her to sleep, and more. I had to call friends to come do the same because I couldn't. She cries and yells when I can't get on the floor, go outside with her, pick her up, or take her places. I feel like they got the bum end of the deal. Yes, they both know they are loved. I try to build them up constantly. But, is that enough? Am I enough?

I didn't picture life being this hard.

BUT...(halle-FREAKIN-lujah), I finally reached my "I can do this" state today. Yesterday while my hubby and daughter were at church, I read through Job. Christ suffered more than any person on earth ever has, does, or will suffer. Job is another who didn't suffer as much as Christ, but sure did suffer. He had so much taken from him and even rued the day he was born, as well. Through his suffering he grew closer to Christ. Luckily for me, I have only had a few people desert me or get mad at me for forgetting things or not sharing enough or talked more about me than to me. Thankfully, it didn't last and they have been great supports to me. I had pulled back from a lot of people in hopes of not being a burden and cutting down on the pain. But, now I've seen that reaching out has helped me more than isolating and hiding away. All of our financial struggles have been tough, but in the end a real blessing. There were many times I didn't know how we would have a roof over our head or food on our table. We went without a lot of things for a long time. But, we survived. And then a really beautiful thing happened. (I'll write more details later). Many friends came together for me in December and January. Before this, there were just a handful of people who popped up at discouraging times to remind me I wasn't forgotten or alone. For as long as I live, I will never forget their generosity and inspiration. But, then in a massive gesture, at jaw-dropping scales of generosity, I was given gifts that told me I was NOT forgotten or alone. God was so aware of us and performed miracle after miracle through my friends and even some strangers. It was like all of a sudden my prayers were answered day after day. I thought it was just about financial, social, and emotional struggles. But, now I see it was a buoy of hope in my depths of more pain ahead when I felt like I was drowning in sorrows and suffering. Two years ago, if we had simply gotten a good job where we could afford the basics, I would have missed out on so many blessings and miracles. At the same time, I have a greater appreciation for so much, can relate so much more to others struggling, and have felt like the windows of heaven have opened up. The struggle for so long brought about that much more profound blessings.

I've witnessed some miracles and was told in some priesthood blessings that I'd have several miracles ahead of me. I'm learning that miracles come after a great deal of struggle and suffering. If you struggle a little, it doesn't stay with you. We were not meant to come to mortality to get everything and anything we wanted immediately. We wouldn't grow or become who we could be without suffering, struggle, and waiting.

I am SO grateful for priesthood blessings that have given me relief, hope, and answers. There have been times they have saved my life, been the only thing to lessen swelling on top of my head (literally could see the skin popping up through hair and then went down), made it possible to walk, etc. I would not have had those blessings if I hadn't had the struggles first. One thing that has been a common "theme" in my life is "In the DUE TIME" of the LORD. My patriarchal blessing talks about that with my husband. I wanted a hubby at 18. Heck, from 5 years old, I wanted to meet my husband. But, I couldn't find him, so I lived life the best way I knew how until then. I thought it was a punishment at times or that there was something so severely wrong with me to have not found my husband when I was young. In looking back, I can see the Lord's hand in my life and my husband's life. We were both being refined and prepared. I'm afraid that if I had gotten pregnant at 18, my health would be considerably worse than it is now. Medical advancements have come so far since then, especially with regard to MS. I didn't wait for my husband by hiding away, complaining, or sitting in misery (although there were moments of all of them). I earned an Associate's, Bachelor's and Master's degree. I bought a house and a car. I lived in the Holy Land, walked where Christ walked, served Palestinian children in a hospital, climbed Mount Sinai, traversed the land of Petra like Indian Jones, helped build a school in the slums of Kenya, donated to 5 orphanages, explored the Masai Mara with a safari and tribe, worked with hundreds of abused and neglected children, taught many more children in elementary school, stayed in castles in Ireland, saw the Queen of England in the streets of London, saw the English countryside with famous landmarks and people's history, had my FIRST kiss at the Eiffel tower in Paris, rode the chunnel under the English channel, rode a night train into Italy, toured under the Vatican where they asked, "Where do you think his bones are?" and met my Greek family, stood in my great grandfather's house, felt the spirits of my ancestors, and cruised 5 Greek isles and Turkey. The next month, after completing the last of my "GOALS/Bucket List" (with mother and wife #1 & #2 on the list), I met my husband. God's timing was perfect. I would have missed meeting the incredible friends I have in my life if I had died as a baby or gotten married right out of high school. (By the way, I'm not knocking anyone who DOES get married young. It is wonderful and works beautifully for others. It is the perfect timing for them, just not my personal journey).

I have been blessed with special patriarchal and priesthood blessings! I have vacillated between doubting and believing them. Certain statements make sense of why Satan is attacking me so hard or other questions in life. Many, though, leave room for a great deal of communication and waiting between God and I. That desire for knowledge and open communication with our Father above are vital to our mortal journey.

One running theme I've noticed in blessings is the 'Due Time of the Lord.' What if "DUE TIME" of the Lord meant the next life? Ugh. Why can't the Lord's time be NOW? I find myself asking the same question with regard to my health now. I've been told that the pain will be taken away in the Lord's due time. Faith is not just praying and getting immediate answers. Sometimes it works that way. But, I have learned a deeper faith when it is delayed. A faith where you pray and don't give up even when the answer is "Not yet." To believe that God WILL answer my prayers in the PERFECT way, at the PERFECT time is a faith I hold to. I have NO doubt that God WILL answer my prayers. I believe entirely in prayer, miracles, and strength He provides while waiting. I do NOT know why I have to suffer until I can find relief. But, I also know God doesn't give us anything that isn't for our eternal benefit. Everything gives me experience and is for my good, even if I don't fully understand it. (D&C 122:7). There is a point to my pain. Although I don't know what it is. I don't think that I have to learn MORE patience, strength, gratitude, faith, hope, or perseverance than others as a punishment or because I'm in need of more lessons than others. But, I do know that these traits will deepen and develop further on this rocky journey. I know miracles and joy follow great trials and distress with a great deal of time that seems so much longer than we can bear. Do you ever feel like you are given a promise and then taken up to the point where it seems like it is IMPOSSIBLE? And then you're taken even further down the path of questions and uncertainty? Thank goodness for examples of people in the scriptures and my family and friends who have struggled, questioned, doubted, and feared but chose God and came out conqueror in the end.

This morning I was thinking of someone else who bore too much and felt like he would crumble under the pressure. When Joseph Smith was in Liberty Jail, not too far from where I am now, he received some of the most poignant inspiration that I hold dear to me today. Elder Brigham H. Roberts of the 1st Council of the Seventy spoke of the facility as a "prison-temple." https://www.lds.org/ensign/2009/09/lessons-from-liberty-jail?lang=eng  Jeffrey R. Holland continued, "Indeed, you can have sacred, revelatory, profoundly instructive experiences with the Lord in the most miserable experiences of your life-in the worst settings, while enduring the most painful injustices, when facing the most insurmountable odds and opposition you have ever faced." I feel like it really sums up how or where I've been this past week. For the last several years I've felt like I'm in a bit of a prison. Recently I felt like the prison walls were suffocatingly inching closer and closing in on me. But, with those who have reached out, visited, and helped me, I've reached a greater understanding of God, Jesus, and those beyond the veil. God's hand is in our lives, especially in our darkest moments. It is a time of learning, letting go, and finding more light, as long as we allow it to make us better instead of bitter.

I have two friends who could relate to me better with physical trials. One of them recently passed to the other side. I don't know a soul on earth with the same physical trials I have, but I do know Christ felt it all. He is who I can turn to always and I know his atonement is far reaching. Through these struggles for the past 19 years, 3 years, and last week especially, I have gained a closeness that has reached a deeper level, I believe. I feel closer to certain ancestors, two in particular who struggled with incredible health problems when they lived (they've passed on). I feel closer to Christ and God and am willing to keep going, no matter what my future holds.

I have complete hope and trust that EVENTUALLY this pain will subside. I don't know if it means another surgery or just time. I cannot wait for the resurrection. But, until then, I'll keep living.

There are many who have helped us recently and I see more clearly that our financial burdens put us in a place of need. By accepting help from others, it provided something for me to hold onto and look to when I was at my darkest moments this week. It was just a few months ago when I asked God why we had to struggle in so many ways. Physically, financially, emotionally, socially, and even spiritually. It was too much to bear at times. But, by struggling in some ways, it opened opportunities to see love, hope, prayers being answered, sympathy and empathy, which now is spilling over. I've always been a compassionate person, but I have even more compassion for others struggling in any of these ways. It sometimes helps to know someone else out there understands what you're feeling, what you've been through, and that it worked out okay. Christ himself feel on his face, and prayed, saying, "O my Father, if it be POSSIBLE, let this cup pass from me: nevertheless not as I will, but as thou wilt." I am no where NEAR Christ's perfection, sacrifice, wisdom, or life obviously. But, I can relate to begging God to let it pass. I have so many friends who have prayed with me, stayed up crying with me, reached out to me, walked with me when I can't walk, read to me when I can't read, paid for me what I can't pay, given hope when I can't hope, given gifts when I felt I had nothing to give, and been with me at my bleakest moments even though Christ and Job didn't.

I thought all the prayers on my behalf would miraculously make everything easy and work perfectly. They would lift the burden instantly, just as the neurosurgeon had described. All would be well and I could get back to the old me in no time. While I know God is powerful enough to have done this, it was not the case for me.

But, today I realize that the prayers will eventually bring this to pass. However, what your prayers and fasts have done for me have given me the strength and courage to carry on. 2 Nephi 31:20 says, "Wherefore, ye must press forward with a steadfastness in Christ, having a perfect brightness of hope, and a love of God and of all men. Wherefore, if ye shall press forward, feasting upon the word of Christ, and endure to the end, behold, thus saith the Father: Ye shall have eternal life." "Endure to the End" is the hard part, right? Endure means to suffer patiently. A few days ago I thought I couldn't keep suffering. But, I know that I'm not alone and that I can indeed carry on. Suffering is refining as long as I never lose sight of the Savior. As my friends and family have prayed, given, fasted, called, texted, and shared messages of hope and love, they have pointed me back to the Savior for strength. I remember the year when I had started to die (a doctor messed up, my body was being poisoned and I was experiencing a serotonin syndrome with my intestines first shutting down entirely, then blood over my kidneys the doc thought someone took a bat to my back & stopped listening, couldn't stand for more than 2 minutes without almost fainting or throwing up for many months, eyes rolling in the back of my head, couldn't walk, slurring speech, for 3 days could only think, "Heal me or Kill me") and thought there was no way I would survive. I would go to church and twitch on the floor of the mother's lounge until someone came in and then I'd crawl out until I couldn't leave my apartment anymore. I would crawl down my hallway and do work on my couch after I collapsed at work. Or when my horrible OBGYN thought I had a kidney stone instead of being in labor, even though I explained my sister only progresses with pitocin and my mom only felt back labor. So, I went back and taught elementary school, eventually wore depends, and suffered for 3 days before getting a second opinion from a urologist, then being put on pitocin for 30 hours, to finally have my baby girl after nearly 6 days of labor. Or the many times I had MS exacerbations and didn't know what it was (when I thought I was going blind and deaf at 19). Or when I was in my intensive Master's program, had a failing gall bladder and would throw up randomly, but kept going. Or that time when we had so little money that we thought we wouldn't survive and then miraculously, we did! Just like I did back then, I learned how to manage. I learned how to breathe right to stop throwing up (not the gall bladder). I learned how to read lips, look in the direction of someone speaking when I couldn't see them, how to teach sometimes leaning over a garbage can, how to twitch on the floor, but have the students come to me as I taught them mathematics (when I was a case manager, not as a teacher), use furniture, walls, or a walker to walk, and use my phone to talk to text or other wonderful technological advances that made it easier for me to accomplish what I needed to.

I've learned how to bear it and continue on while finding joy and hope in the journey. There has always been a depression, followed by some adjustments and a learning curve, when I have to learn my body's new limitations. I suppose this is my next big hurdle. Maybe it will get better (I'm still hoping so, thinking maybe my brain is just trying to figure out what happened and fight off the illness too). And maybe it won't. But, I can't live in that space of misery and maybes. I'm going to learn how to talk, laugh, and move despite the pain. I feel like I can do it. It's my next adventure and I'm gonna gain strength somehow. From my angels on earth (friends and family), my angels on the other side of the veil, and from God and Jesus, I have hope and strength to carry on again. 

Here goes NOTHIN!



SaveSave

Surgery Update

Here's the jist...I'm writing this as our neighbor's house is on fire and there are several fire trucks here. So many other people are struggling with big things and I am again reminded just how blessed I am. Things have been hard for the last two days, but it could be worse. The first few hours after surgery I cried quite a bit and thought...HOW MUCH MORE is going to be taken away from me? But, I finally decided that there could be good things from it all.



Here's the short version: I remembered too much of the surgery. It was immensely painful and the worst trigeminal neuralgia pains weren't taken care of as we all had hoped. I also realize there is a good chance I won't be able to do the other side's TN surgery. I may have these pains forever and nothing to help it.

Truth--> A lot has been taken away from me with my MS and occipital and trigeminal neuralgia. I don't go out much. I have to be careful about opening my mouth too big by eating, singing, or laughing. If you know anything about me, you know I love to laugh. Sometimes I can't handle my little daughter kissing me, brushing my hair, lying on my head or face at night, or brushing my teeth. I still do it all, but struggle through it. I put a lot of hope into the surgery and figured it would be fine. I was told that I wouldn't remember the surgery, the recovery would be no biggie (just some soreness at the incision point), and I could eat right after. I was hoping I could soon go off the heavy medications I'm on for the pain. They are getting less and less effective and the side effects are getting worse.  Twitching, memory issues, worse fatigue, more dizziness, vision issues, etc. I went from traveling the world, teaching 4th graders, laughing my guts out, socializing a ton, and dreaming big. I now can barely travel to church and back without issues. I had academic scholarships, graduated with a 4.0 GPA in my Master's program, and could multitask and speed read like a boss. Now I struggle with the simplest recall and struggle holding onto new memories unless it has a strong emotional or pain tie. Half the time I have to read something multiple times or can't see enough to read at all. I hold back on laughing, socializing, or building new friendships. I was hopeful that parts of me could come back after these surgeries. But, the opposite is my new reality. I try not to complain, aim to find the silver lining in every dark cloud, and keep hope and faith alive. But, I struggled immensely the past day and a half in these areas.

Yesterday morning I was at the hospital at 5:30 a.m. for my rhizotomy or radio frequency lesioning of my right trigeminal nerve (specifically V1 and V3). I have problems on BOTH sides of my face in ALL THREE branches of the trigeminal nerve. It's very rare and mine is caused by my MS tearing down the myelin sheath. It's harder to treat, but we were quite hopeful. The morning of the surgery I learned that V1 is the hardest to reach. I also learned there are a few MS patients who endure the surgery and it only helps for a few days. I had been told that I wouldn't remember the surgery and the recovery was no biggie. I could expect a bit of soreness at the incision point, but nothing more than that. As I understood it, they use a hollow needle, go in by the mouth, enter through a tiny opening in the skull, and use heat to cause a lesion to numb the nerve a bit. This causes the brain and nerve to stop firing and communicating. It is temporary and both sides would have to be repeated every 1-2 years. In my research, I thought killing the nerve is where you get facial numbness and trouble chewing or swallowing, not this one. Maybe I misunderstood...I still don't know.

I went into surgery quite happy, hopeful, and calm. But, towards the end, I was too awake. They put you under to an extent, go in with the needle, ask you if they got the right spot, and then put you back under with more anesthesia. I don't know if it was because the surgery took too long or if they just hadn't given me enough anesthesia, but I remember the end of my surgery too well. I was crying and screaming as they were moving the needle. They finally stopped and I was moved to the rolling bed. My body kept twitching in pain and I kept moaning, hoping it would stop. I was wheeled down the hall, they parked the bed, and I looked at the clock-10:00 a.m. 2 hours. I kept telling them it had hurt. They misunderstood me and asked what was hurting. I told them that the SURGERY hurt too much. They looked a bit horrified as they realized I was too awake and remembered it. The neurosurgeon tapped my forehead and I told him I felt it. No numbness. It didn't work on my worst part, V1. He seemed bummed. He left and I had a horrible trigeminal & occipital neuralgia attack on my right side. They gave me a pain medication and I asked to leave. I had only been out of surgery for 5 minutes, so they said they had to monitor me longer. 5 minutes later they asked about nausea. I was feeling nauseous from too much pain, so they gave me that and I again asked if I could leave. I just wanted to leave and sleep somewhere comfortable. I started crying because I realized the surgery didn't work on my worst part. The neurosurgeon met with my husband and said they tried twice to get to V1, but it didn't look like it worked. The nurse told him I might remember a bit too much of the surgery. I got out of the bed and wheeled away at 10:40. The nurse had said they medication usually knocks people out, but "nothing puts you to sleep it seems." My other surgeries have been the same--I push through so much on a daily basis that I can function despite severe fatigue, dizziness, nausea, light headedness, and drowsiness. However, I didn't remember my other surgeries IN the operating room except for my C-section. That was a happy moment. This one...not so much.

The numbness in my face is intense. It's kind of like when you get numbed at the dentist, but more severe and covers much of my face and head. There's a tightness and swelling, with a bit of daggers and burning on my lips if I laugh or talk. I slur my speech and can barely taste anything. I drool and struggle chewing, swallowing, brushing my teeth, eating, etc even more than before. I was born without a real sense of smell, but having half of my nose and most of my tongue and mouth numb makes things much more difficult. I feel like part of my head is in a vice, even more than before the surgery. I don't know if the nerve was killed (these issues were specific to a dead nerve in my research) or if my body is just in shock and if any of it will lessen. I still have stabbing pains-oddly enough, even in my numb parts of my face. There is a dull pain that is deeper now and some stabbing pains. It's funny to have a numb jaw, ear, some of my head, up to almost my eye. I think it may have been good that they didn't get V1, because if you get V1 and V2, there can be permanent vision and/or cornea problems. I decided I don't think I want a numb eye. It feels as though they got V2, V3, and almost half of the back of my head and ear, although not enough for the occipital neuralgia (hoping it was a bleed over effect). I realize that if this is how I'll be for the next few years (or even forever), there is no way we can do the left side. My worst pain on my left is in my mouth (V3), which funny enough is where I have to chew now. I feel like I traded one bad situation for another. I also have had some incredible headaches that seem to be worse than before and more constant. When all was said and done, I think I'm glad they got V2 and V3.

Silver Lining: Maybe now I'll lose weight.
Maybe some of the numbness will subside.
I didn't wake up blind.
My house isn't burning down (theirs isn't either---It doesn't look too severe, thank goodness).

My beautiful grandmother had a tumor, they cut the nerve, and her eye dried up, so they took it. I kept reminding myself that I'm glad they have come so much further medically. She lost a part of herself and still lived a wonderful life. Maybe I'm losing more of myself, but hopefully it's just temporary. I've gone 3 years with these pains, so what's another 2....or 20? I've lived almost 2 decades with my other diseases and still lived a lot of great dreams.

As I felt like bugs were crawling on my head, itchy, swollen, tight, numb, stabbing pains, burning lips, loss of taste, etc, I remembered that people had reached out to me in December & January. I was able to get a massage to help with some of my neck and shoulder pain, family is watching my daughter so I can rest, my hubby and I got to see a movie and eat out for our 5th anniversary a few days before, and I have felt more "normal" lately. We've been miraculously taken care of in so many ways I didn't think were possible. So, I'm going to assume I'll be taken care of, maybe even miraculously, with these trials too. Maybe I won't, but I'll miraculously have enough strength to endure. I'm not forgotten and for whatever reason, this is my journey. I don't know what next week, next year, or the next decade will look like. But, I do know that I have incredible people in my life. Prayers, love, and help have caused me to keep going and to hold on for dear life. Everyone who has sent messages, letters, gift cards, prayers, and help when I didn't know how we'd survive January/February have carried me through some really dark times. I cannot thank all of you enough.

I meet with the neurosurgeon again in a few weeks. We will see how I'm doing. I'll try to update here, because it's easier to explain once. Sorry that it's not very personal. Again, thank you so much for the prayers. I think they were led in the surgical room and maybe eventually I'll get the left side done and it will be an even better experience. Who knows. Bonus: no aneurysm occurred, no blindness, and at least part of it is numb, so half of it sort of worked. Kind of. ish. I'll take what I can get these days.