Hello HOPE. I'm ready to wake up from the nightmare now.

Almost 3 years ago I was on one of the worst disease modifying drugs for my MS, Tecfidera, and my neurologist wouldn't listen to me. He refused to take me off of it, despite the fact that I'd had two of my worst exacerbations and continued to get worse and worse. "You don't feel the positive effects until after 6 months." He ignored my new issues with pain on my left eye and face. I suffered severe malnourishment and had the worst type of flu you could imagine every single day for 7.5 months. I finally was able to quit and wondered if I should never see another neurologist again. Each time I go on a disease modifying drug, I get permanent disability and major issues. I feel like it speeds up my MS decline. If you read a lot of the information on the newer medications for MS they say scary things like, "We don't know why it works. We just know it works in a percentage of MS patients." {Thankfully I'm now with a neurologist (2, actually) who specializes in MS. She has seen a FEW like me and is okay for now just treating my symptoms.}

Nevertheless, I quit the MS medication and quit seeing that neurologist. I thought he was the worst, but I was referred to one who was even worse. Clueless. The pain in my left eye and face continued to grow worse. In fact, months later the pain was now also on top of my head. I would swell up on certain points on my head, my hair was falling out to the point of bald spots, and I had other issues we couldn't explain. Irregular heart beat, bald spots, increased anxiety, worsening MS symptoms, and no insurance off and on. I wondered if it was because of stress? Because I'd been using travel shampoo that was at least 6-7 years old? We were tight on money and I would get blessings to deal with it all, but couldn't see another doctor for quite some time. Finally I was able to get into some doctors. Dermatologist said, "Alopecia Areata," and injected my scalp with steroids. Then I felt like my eyes, especially my right eye, was going to pop out of my skull. Instead of helping, it was worse. The neurologist guessed it was because of severe malnourishment after my body rejected the Tecfidera. You can have issues even 6-12 months after the offending curse was gone from your body. Temporary, most likely, was the hope for my hair loss, but again I had no real answers for the swelling on my head and feeling like a porcupine with a hammer was after me. 

The pains were still sporadic, though (not quite daily except for in the summer). My hair loss and swelling was alarming, though. I was losing the one thing I liked about my body. I never considered myself vain by any stretch of the imagination. I detest shopping and would always rather put my money into memories instead of things like clothes, handbags, or fancy cosmetics. But, once I started losing my hair, got dark spots on my face, and all kinds of other issues, I was feeling quite hideous. Nonetheless, there weren't many answers and I just kept moving forward and the pains increased in intensity and frequency.

 Then the ophthalmologist figured out that it was "Occipital Neuralgia" and should go away-tight muscles. Later I went back because instead of going away it was just getting worse and now on both sides of my head. The swelling and stabbing pains were too intense. He didn't have many answers beyond glycerol injections. Eventually I was able to meet with an endocrinologist 3 hours away. There wasn't a single endocrinologist in my town and later I found out my insurance didn't cover any doctor outside of my town. Anyway, she found that after 17 years of hypothyroidism, I had moved into hyperthyroidism. I finally knew why after changing my diet closer to the word of wisdom, and experiencing weird side effects, it was because now, for the first time EVER, I needed LESS thyroid medication. I'm on HALF of my dose! Once we leveled out my medications, some of my issues went away, but the stabbing pains didn't disappear. 

Eventually I found out I had Trigeminal neuralgia AND Occipital neuralgia ON BOTH SIDES. It is really rare to have TN, but even more rare to have it on both sides. Trigeminal neuralgia is called the suicide disease because 25-26% of people with TN commit suicide. It is recognized as one of the most painful diseases in the world. I'm guessing these desperate people are the ones like me who try multiple medications and instead of getting better just get worse. I'd imagine if you had it a century earlier, it would be frightening and incredibly hopeless. 

I was starting to feel incredibly hopeless. But, I can't help remember my dear grandmother, whom I only ever knew with one eye. It took them many years to figure out that she had a brain tumor, they cut the nerve, and she lost her eye. I feel like she is with me at times, encouraging me to keep going, reminding me of the medical advances we have these days. 

I was able to meet with a neurosurgeon and it was a breath of fresh air. He knew what he was talking about and had a direction to go! If my Trigeminal neuralgia had been caused by a tumor, they'd blast it away or if it were a blood vessel pushing on the nerve, they'd move it. But, sadly, mine is harder to treat. Mine is caused by my MS, as my body continues to tear away the myelin. He was quite hopeful that we can avoid the open Rhizotomy for later down the road. Sure, the solution is a temporary one, BUT, there is HOPE. I will need 2-3 surgeries and then will have to repeat the 2 minimally invasive ones every 1-2 years. Ironically, it's radio frequency lesioning of my trigeminal nerves. My biggest issues in my body are because of lesions in my brain and spine. Now we will CAUSE lesions in my nerves for my face and head. You can't do V1 and V2 at the same surgery or you run into permanent vision and cornea problems. Since I already have had vision problems for nearly 19 years (and worsening the last 2.5 years), we don't want to risk that. You also can't do both sides at the same time. So, I will go in and have V1 and V3 lesioned and numbed for my right side. Then I will heal and go back for my left side. Then if my occipital neuralgia doesn't improve, I will have to go in for my THIRD surgery. This brain surgery is more invasive and involves permanent electrodes and a type of pace maker, but for my brain and nerves. I'm HOPING and PRAYING that I can just do the first two surgeries. The occipital and trigeminal nerves are close together and the neurosurgeon is hopeful that if we take care of the worst problems it will alleviate the pressure and problems on the other.



If you're the praying type, I'd LOVE prayers that:
1) The surgeries can be successful and I won't have the complications. (Minimal risks-bleeding, infection, aneurysm, and anesthesia delarosa {brain registers numbness as burning pain that doesn't go away, so then you have that AND the TN on top of it}.
2) I can avoid the permanent stimulators and pace maker thing in my head.
3) My MS can be healed or lessened.

I know I'm asking for a lot. But, recently I learned it's okay to ask. I'm okay if the answers to all are NO. But, I'm still gonna ask and HOPE.

After the surgeries are done, I will be able to start coming off the horrible medications.

OHHHHHHH, the HOPE! I might be able to:

SING again (I haven't been able to for a year because of pain)
See, read, and write like I used to
Remember simple things
Drive
Go a full 24 hours without twitching
Go outside more than 1 hr per week without major issues
Concentrate
and so much more...
BUT IF NOT, I will be okay. I will still appreciate what I have and what I can do.

<3

God bless the GOOD Samaritan and MORE

As most people this season have been contemplating the birth of Christ, I can't stop thinking about the parable of The Good Samaritan. My focus used to be solely on the Samaritan in the story. But, lately I have been reminded even more that I (and possibly ALL of US) have a connection to each symbol and role in the parable. {Scroll to the bottom of the post for the connections/symbols/thoughts}.

https://www.lds.org/bible-videos/videos/parable-of-the-good-samaritan?lang=eng

Growing up, my favorite Bible story was of the Good Samaritan. Once I started getting health problems, it became the "Woman with an Issue of Blood." At times it has been the "Widow's Mite." All three have combined this Christmas season (and last) and I wanted to share some thoughts specifically on The Good Samaritan.

We know the story (Luke 10) where a lawyer asks Christ how to obtain eternal life. Christ responds in a parable. And just as parables are meant to touch us, there are layers upon layers of meaning. When I was younger, I dug deep enough to know I needed to serve. Beyond that, I didn't look or ponder enough to decipher further symbolism or connections.

I never put much thought into the other components mentioned in the story:

Priest
Levite
Thieves
The man left half-dead
Inn Keeper
Jerusalem and Jericho
Oil & Wine
Donkey

I knew enough that the Priest and Levite made poor choices in this instance, but often were seen with more reverence in society at the time than the Samaritans. Priests did much for the temple and people, as mediators, essentially. Levites I also associate with the Priesthood and serving in lower capacities in the temple than a Priest, but important nonetheless. Thieves are a lower class of wretchedness obviously and are despicable no matter what time or place you live. Finally, when I contemplated a significant "Inn Keeper" I really only connected that to Christ's birth.

Fast forward to when I was living in Jerusalem and I got a better understanding of the Law of Moses (maybe the Priest and Levite didn't want to go through the ceremonial cleansing ritual that would have been required by helping this man on the path. Maybe they thought they were above him. Maybe it just wasn't convenient. Their reason is less important than their actions, though). I know at the time of Christ there was a great deal of division and enmity between Jew and Samaritan. So much that they would literally go OUT OF THEIR WAY to avoid the Samaritans, say from Judea to Galilee by taking detours to avoid the province of Samaria between. I also knew that Jerusalem has been a symbol of holiness, wherein the temple stood and many came to worship there. King Herod had the temple in Jerusalem rebuilt and a winter palace in Jericho, as well. However, his motivations for these and other architectural wonders were quite different. Herod merely ordered the temple built (and added to from time to time until 64 A.D., just 6 years before its destruction) to gain favor with the Jews. His winter palace, however, was a worldly, extravagant oasis in Jericho for him. To travel between the two cities, a mere 25 KM, you descend considerably from 2,500 ft ABOVE sea level to 825 ft BELOW sea level. Jericho is the lowest city on the face of the earth with one of the oldest histories to follow. Some may say Jericho vs. Jerusalem is a symbol of "worldly" vs "Godly." The road to connect the two was known as a dangerous and difficult road that traders, pilgrims, armies, & all kinds of religious and common people traveled.

While in Jerusalem, I also helped press grapes and olives in Jerusalem and had a better understanding of Christ doing it alone. I was overcome with emotion when I watched one specific type of olive press squeeze all the oil from the olives we had picked. I was surprised at the spiritual experience I had, as the olive oil that leaked out resembled blood. I read about how Christ tread the wine press alone and the significance of oil and wine in the land. (Isaiah 63:3, D&C 133:48)

Not the one that typically would have been used in Christ's time, but the one I loved the most.

I have shared some of my physical, emotional, and financial difficulties over the years. Never quite the full extent of struggle, but enough to share my thoughts, emotions, gratitude, and reality. However, the last three years since my husband's furlough with the railroad, moves, decrease in health for both of us, and new diseases, I have gained a greater appreciation for this parable. Each passing year has brought a new low I never fully grasped financially, physically, and emotionally. Before this experience, my financial lows were temporary. My physical trials were tough, but not unbearable (for the most part). My emotions with various medicine changes and hormone changes compounded with new diseases were tough, but again, manageable (for the most part). The way I have always dealt with any difficulty is to simply bear the worst of it entirely on my own. I do not mention it much unless it scares me and I think someone else needs to know in case I collapse and end up in the ER. I don't complain about it until I've reached a breaking point. Then I deal with it quickly and go back to silently bearing it. 

The past three weeks, though, I reached a breaking point. In fact, this past year I've reached my breaking point several times. I remember watching the movie, "Concussion" with Will Smith (based on a true story). I remember hearing about a man who was so bad, he ripped out his own teeth and then super glued them back in. The shock and horror. I couldn't imagine the pain and anguish. ...and then my neuralgia spread. We haven't had health insurance off and on and haven't been able to pay out of pocket. I have needed a root canal for almost 2 years. There have been times I've thought about just going to get it pulled or pulling it myself to save money. (My husband wouldn't let me---he takes EXCELLENT care of me. It was mostly okay most days). But, I am not even 40. I'm losing my hair and don't want to lose my tooth too. HOWEVER, the pain PALES in comparison to Trigeminal Neuralgia. There have been a few attacks so bad that I literally have to talk myself through not wanting to pull out my teeth, my eye, or bang my head hard enough on the floor or wall to knock myself out. There is NO pain medication that I have found to take it away. Two have taken the edge off somewhat, but I'm getting worse and the side effects are miserable. It's why I'm meeting with a neurosurgeon two days before Christmas to discuss if they'll drill into my skull or do another type of surgery. If it works, it will be worth it. 

My depression and anxiety have increased because of all of this, as well as the newer medication I was on. If it weren't for my faith in God and Jesus, as well as my relationship with them and my family, I would have committed suicide a while ago. I am so eternally grateful for my Savior, God, family, and friends who have literally lifted me when I physically or emotionally (heck-even financially) couldn't do it myself. Truth be told, I have felt HALF DEAD for the last two years, but especially this past year. 

Then it dawned on me. I think at one time or another, ALL of us are ALL parts of this poignant parable! 

Sure, there are some parallels from this parable and Adam & Eve's fall and rescue, which is our own story as well. Spiritually, emotionally, and for some physically and financially we fall and are in need of charitable intervention. I used to think of my health problems as weaknesses I had to just bear and try to bear alone. I did bear it alone most of the time ... until I couldn't anymore. And that has been a curse and a blessing. 

My husband and I have wondered why we prayed to go with the railroad if 3 weeks after training they would furlough? Why would he have two ER visits, robbed 4 times, my new diseases, asking for help and not getting it, budget down to minuscule amounts and still not have enough, stay in the homes we did, and move so much or do school if we could have saved ourselves a lot of debt and heartache by skipping the terrible trials? I have learned a GREAT deal in these trials. I thought I knew poor, but I had no idea until we had to decide which utility we would cut off, who we could ask for toilet paper and bread, and the strength to tell yet another doctor, "Nope, I know it's your recommendation for hospital/test/medication, but we canNOT afford it." I remember moving back to Kansas for the railroad, only to learn they furloughed again that night. Thousands of people were being furloughed this time instead of hundreds. No work. No unemployment. Second mini stroke (and not recovering). And I met with the Bishop about a calling to teach RS again. He asked how we were doing and I bawled...and bawled saying, "I don't know what we are gonna do. We got a letter that we don't have insurance. My MS is horrible. My husband just got out of the hospital and isn't recovering like he did the first time..." I was cut off and asked if I still lived in the same rental. I was so in shock, that instead of explaining that we had discussed selling our things, breaking our lease, and moving in with my in laws, I simply said, "Yes." His next response was, "Okay, we'll set you apart next week. Bye." And that was it. Or on another occasion I asked if we needed to pay fast offerings even though we have no job, no money, no food stamps...nothing. Answer? "Yes. I mean, it's between you and the Lord, but YES." So, I paid our entire monthly grocery budget of $20 and cried. I sat in lessons in RS where a woman talked about how her utilities were paid by someone. What a miracle. Another had a plane ticket bought so she could attend a funeral. I was grateful that they received help (honestly---I would NEVER have taken it from them and felt that they definitely deserved help). But, I have always had a flaw in my thinking and I don't know why. I always make it a point to try to see the best in people and share that with them. I do not expect perfection from anyone but ME. I figure everyone around me deserves the best, assistance, love, understanding, compassion, and forgiveness but me. I don't know why, but this experience started reinforcing the faulty beliefs. I struggled. We applied for state assistance and they had a system crash and were back logged by thousands. It took almost 5 months before we ever heard back. I later saw a politician bragging about how they didn't expand Medicaid and had blocked many who applied for help. 

And then a very inspired friend sent us more money than any other friend before. She wrote about how she had been inspired to help us. That I was important and not forgotten. I have literally clung to that note and messages from her and others when I felt forgotten and alone. Later I learned our Bishop was going through cancer and surgeries. I also experienced the lack of concentration and struggled understanding because pain was too intense. So, I had a better understanding that it wasn't the Lord rejecting ME for help or compassion. It was simply the situation of both of us being human. Thankfully my husband also improved and was able to work again several months later. I learned a lot throughout the situation and am glad to have gone through it (and especially to not be in that situation any more). 

Back to the Good Samaritan (my own take on it all):

Thieves: We've been robbed too many times. I felt violated, scared, and unsafe. And then I learned things were just things. I'll be okay. But, we all have done damage to another person. Sometimes unintentionally or at other times intentionally. We sin. Hopefully we don't do it too often or too harshly, but we all have hurt someone. Thankfully if something has been taken from us, it can be restored through the power of Jesus Christ. Maybe my favorite restorations are emotionally and spiritually by always relying on Him.

Priest: They were mediators, often, and had important roles and power. They did not take the role on themselves, but were chosen. But, some chose to ignore their role, avoid, and shrugged off inspiration or intervention. We've all done it. It feels rotten in the end. I think the important distinction with a priest is that they draw close to God and intervene on behalf of the people, specifically at the altar of God. They sacrificed, prayed, taught, officiated at festivals, and were held to a higher standard with unique restrictions, privileges, and expectations. We sacrifice differently now that the Law of Moses has been fulfilled by Jesus Christ. But, we still sacrifice, pray, teach, and have privileges and expectations that are a blessing if we do them consistently. 

Levite: Sometimes they are connected to the title of a Priest and other times there is a specific distinction. I look at them as similar, but have different roles to make everything work. Some may view them as "lesser," but I don't in that their roles are important. My roles have been case manager, secretary, teacher, mother, unit counselor, and other church callings as well. All responsibilities I took seriously, but carried out my duties at varying levels. Often I minimized just how important my role was at the time (or maybe Satan screamed it and I listened). How much could I really do? Influence? Impact? How important was it really in comparison to say, a "Priest" or mother of 8 like I wanted or teacher in the slums or {fill in the blank} job/career/calling? 

Jerusalem to Jericho: I loved the St. George Monastery in the Wadi Kelt along the way from Jerusalem to Jericho. I remember when I first moved to St. George, Utah and thought I just didn't belong. I wasn't sure how long it would take before I felt at home. But, oh, Utah (and Vegas) will always be my home-base. How I miss the lack of bugs, the friends, the family, the lack of humidity, the nearby temple, and my connections to the outside world (being able to go outside). But, Kansas has some wonderful plusses too (minus the bugs). New family, a few friends, cheaper homes to buy, a WONDERFUL ward, and educational opportunities for my hubbykins. The important part, though, is that I have prayed and followed inspiration as to where to move; where to journey. Oh, how I've moved. But, the people I've met along the way have been inspiring. Christ walked the same road to Jericho as these people-he was baptized in the waters nearby. He literally descended below all things. We don't have to descend below as much as Him, but He has been where you and I are-every emotion, heart-ache, sorrow, pain-He has walked the path we are on and wants us to reach out. Sometimes we have to follow in His difficult steps, but as long as we stay on the road, with Christ's steps in view, we will come out so much stronger, better, and happier. Just because the road is hard doesn't mean it's the wrong road. It's who you become through the journey as you look upward, reach outward, and move forward that matters most.

The man left half-dead: We all are going to need intervention at different times in our lives. Sometimes it is because of our own weaknesses. Other times it is because of the sins of others around us. And then there are just things that we have to endure that are simply our mountains to climb. We will need someone ELSE to do for us what we canNOT do for ourselves. There have been times when I've born it alone. I haven't reached out. I don't know if it is assumed the man left half-dead reached out or didn't. Maybe he didn't with the Priest and did with the Levite (thus the "saw" and "came and looked on him,"). I can tell you the times when I have shared my struggles and people are praying for me all of a sudden, I can tell a MARKED difference! I literally have felt prayers at different times in my life.  The times my baby cried and cried because I couldn't lift her or I couldn't talk or walk or when I have had to separate from my hubby for a time because of my health (his work and my need for assistance from family) and others came to intervene, I was forced to ask for help. It is deeply humbling when you have to admit you can't do something basic. Or when you are the worst off of everyone around you (physically, emotionally, spiritually, financially), your natural inclination is to hide away. Give up. Isolate. Retreat. Wallow. Lie down and not move. I'm grateful that we are now in a position for education so that we can move on. There is great hope in being a poor college student versus just being poor. I'm happy to be on this end. I cannot explain the relief that comes from being able to buy food and pay for your home AND the heat instead of just waiting until you can see your breath inside, trying to live off food storage and telling Discover/Visa/Mastercard to put it on your tab til it's full. I have so much more hope this year in that aspect of my life. I almost can't count the times I have thought we wouldn't make it and then right before giving up my last ounce of HOPE, someone intervened. 

Olive Oil: A few of my friends gave me essential oils a few years ago. It has been a wonderful help to us, especially when we couldn't go to the doctors. More importantly, I have been tremendously blessed with the Priesthood in my home (or my Dad or home teachers before) and the anointing oil coupled with different blessings to heal me. There have been a few times where I have LITERALLY been saved from death or coma/vegetative state because of the Priesthood and an anointed blessing. Olive oil provided light, just as Christ is the Light of the World. It often signified richness, joy, and health. It was used for cooking, just as Christ is the Bread of Life (and Bethlehem meaning House of Bread). The olive leaf is a symbol of PEACE, just as Christ is the Prince of Peace. Purity. Spirit. Hope. There are so many references throughout the scriptures. But, maybe the most significant is that it takes a tremendous amount of pressure just to get out the bitterness and oil from one olive. Christ endured this and has taken the sting of death from us as long as we look to Him. Along our path, I hope we have light, purity, peace (not as the world gives, per se), and HOPE. 

Wine: Obviously you think of Christ's sacrament & atonement, as well as the cleansing powers wine has for our bodies (externally). I mentioned earlier the reference in Isaiah to Christ treading the wine press alone and the beautiful symbolism there. But, I want to make a little reference to two different types of wine/whine. I hope we turn to Christ instead of whine. May we not gripe and whine continually, but partake instead of the "true vine" (John 15). The cleansing, healing power of Christ's atonement is available to all-every aching, broken soul on earth. We may be broken, but oh, the potential when we are grafted into the vine!

Donkey: Don't be a 'donkey.' (some may substitute that for another word, but I just save that for the Bible. haha). There is a lot of symbolism in the donkey, the first one to enter my mind was when Christ rode triumphantly over palm branches into Jerusalem after he was anointed and before his death. The Samaritan gave up his convenience and walked while the injured man rode. It makes me think of Mary and Joseph too (I don't know if it actually says they used one). At times we've been selfish and kept our luxuries for ourselves. Other times we share. Hopefully we share more. 

Inn Keeper: Obviously the Samaritan trusted this Inn Keeper. He stayed the night with the man and then imparted money to the keeper and gave nearly a blank check for the rest of the injured man's needs. I'll come back and pay whatever is needed. Both the Inn keeper and the Samaritan trusted each other. Other inn keepers haven't made room. Some, like this one, made room for healing and home. Whether it be a place in our hearts, schedules, or literally our homes, I hope I can make more room for those in need. 

Samaritan: obviously he is a type or shadow of Christ who loved every soul to a depth I can't fully comprehend. Christ was rejected and despised just as the Samaritans were of their day. I met a Samaritan by lineage while in Israel, but I have met even more GOOD SAMARITANS in my long journey of struggles. Bless my many angels on earth who have lifted me up and done for me what I cannot do for myself. Christ-like love and charity have been some of the beautiful gifts along this difficult journey. I have learned the last year to stop rejecting offers for assistance. I may still say, "I'm fine" or "Nothing. There's nothing you can do," when a general question arrises. But, now if someone asks how they can help specifically or offers a specific gift, I'm learning to accept. I'm a work in progress and am learning that accepting help is extremely important in this life. How can I cry and ask God for help when someone offers help because they were inspired and I turn them away? 

I remember when I worked as a unit counselor for a residential treatment center. A girl shared a story. A man was on top of his roof in a flood. He prayed to God for help. A neighbor swam by with a floating device and told him to jump. He replied, "No, I'm waiting for God." The neighbor shrugged his shoulders and swam on. Next another neighbor in a boat said, "Jump in! We're going to safety." As the water climbed, he again replied, "No! I'm waiting for God." She shook her head and moved on. Lastly, a helicopter with rescue members shouted, we are here to help as they began to lower the ladder. The man refused, with his nose in the air, "No!! I'm waiting for God." The rescue helicopter moved on to another home nearby as this man crouched on his roof for the last few seconds. ...and he died. When he met God on the other side, the man angrily protested..."I prayed! Where were you? Why didn't you help?" God answered, "I did. Three times." 

I know I have SO much more to learn and as my surgery looms over my head (haha), I know I'm not quite over the hump of these struggles. In a few months I will have had my major diseases for 19 years. Every day for 19 years I've had pain, fatigue, nausea, dizziness, darkened vision, ringing in my ears, and more. In just a few months, I will have lived HALF of my entire LIFE this way. The worst has definitely been the last 5 years with the unbearable parts the last two years. But, I sure have learned a lot, have a GREAT deal to be thankful for, and have truly come to know my Savior and Father in Heaven. I cannot thank all of you GREAT Samaritans who have helped me on my way enough. (We are doing so much better this year than last year, by the way). 

Bless you all for your Christ-like love, compassion, service, sacrifice, and support.