FAITH over f~e~a~r

FAITH over fear

I turned in my paperwork to start Lemtrada (https://www.lemtrada.com/about/lemtrada-at-a-glance)

I've never had to sign so many papers to simply start a new medication. I had to sign that I'd failed at least two MS disease modifying medication. That I understood the risks (new autoimmune diseases, 3 cancers, organ failures, etc). My neurologist then had to sign himself, acknowledging that he also explained the various risks to me. Now I will be assessed by their Risk Management and go from there. My skin check for skin cancer will be at the end of this month. I'm assuming I will start the infusions in March. And I will be checked EVERY SINGLE MONTH for the next SIX years AT LEAST. Of the 14 MS medications on market today, this is the ONLY one that has been shown to improve some MS patients. It was originally for Leukemia patients. It's the most risky, but also the most hopeful.

The last few months, the fears associated with the risks of this treatment (as well as financial aspects) scared me. It consumed me on some days. I've had anxiety for as long as I can remember (childhood). But this goes beyond your typical anxiety because the dangers are legitimately high. It isn't a lack of faith to recognize the risks of this treatment. I HOPE, PRAY, and have FAITH that it could all go very well. But, I am okay either way. I live or die. I get cancer or I don't. I get worse (like every other neurologist or neurosurgeon recommendation in the past) or I improve. I'm already a risk for thyroid cancer. I have to get checked every year anyway and my endocrinologist originally wanted to remove my thyroid last year. Some MS patients, who are really deteriorating, get chemotherapy. Maybe in the long run this is the path to healing in a round about way. I expect it's the direct path. But I'm okay either way. The monthly checks are ideal to catch things quickly. Fear is still there. But, it's diminished to the point of barely surviving in my soul. Faith (that all will be well, no matter the outcome) has replaced fear.

I decided that I can hand all of my anxiety over to God.

My focus this year is FAITH over fear. Literally EVERY fearful thought that pops in my head, I quickly pray to God to take it for me. 

When I was young I thought faith was simply wanting something, asking for it, and getting it.

My focus was on WHAT I WANTED. I thought that was the key to faith.

Then I went blind and deaf for a time and I had all the faith in the world that my vision and hearing could completely be restored. BUT, I wasn't healed. I've had vision and hearing problems every day for 21 years (plus pain, nausea, fatigue, and dizziness).  I PRAYED EVERY DAY FOR 12 YEARS to be healed. And I wasn't. My frequency in prayers for healing changed. NOT because I stopped believing that God could heal me. I've ALWAYS known that He has all the power in the world. He CAN heal me at any moment. In the blink of an eye my body could be changed.

But, it took me time to realize that a depth of faith comes when you PRAY with all your heart for something and move forward when the answer is, "No," or "Not yet." To continue to pray and believe when you're told no is difficult, but eye opening.

FAITH is aligning my will with God's will. 

What if a delay in physical healing comes so that my SPIRIT can be healed?

It's been a trial and curse in a lot of ways to continue to develop new diseases as my body fights itself for more than half my life. BUT, there have been myriad blessings as well. I have grown closer to God more than when I got what I asked for, when I asked for it. I LITERALLY cannot go an hour without help from above. We talk a lot. In my darkest hours I have learned that we are incredibly connected to those who have passed on. I have been more connected to angels here on earth as well. God's grace and mercy are all around. I was blind to it when I was younger, just focusing on what I WANTED and WHEN I wanted it. Now my physical vision may be worse, but my spiritual vision, focusing on eternity, has increased.

God answers EVERY SINGLE PRAYER. And even when the answer isn't what I want, it is still an answer for my best outcome. Faith to me means believing that the BEST is happening to me when God and I discuss my life. I wonder if it's what we did before I came to earth too.

HEALING encompass 3 THREE 3 things:

1. My will
2. God's will AND HIS TIMING
3. The Priesthood 

I'm learning that the "Nos" and the "Not yets" are opportunities to really learn who I am and who God is. 

I used to struggle feeling like my prayers for little things were answered, but not the BIG ones. The ones I wanted with ALL of my heart. I've come to appreciate that opposition and delays are actually a chance to change my heart. To become one with God instead of trying to stand entirely on my own. I don't want my heart to stay in a five-year-old state of tantrumming for what I want (immediately, by the way). And when the answers aren't as I would desire, God still gives me what I like to call a 'GOD NOD.' I see or hear things that remind me that He is near. A nod to remember that His hand is in all. Christ surrounds me and will not abandon me. I may have to abandon my selfish desires-and even my unselfish desires, to become the best me, eternally. 

I'm learning that opposition is opportunity. 

And boy, have I had some GREAT opportunities for growth. =)

New plans (including leukemia/MS infusions, medical marijuana, and the "walking pill")

Colorado has been wonderful in many ways. One being that some of the BEST doctors I've EVER had are here in Colorado. My neurologist has MS himself. I couldn't believe how he answered all of my questions before I needed to ask them! His knowledge was astounding and he was astounded by the lack of knowledge and treatment my previous neurologists used.

We've found that I have:

• Mild arthritis with a BENIGN cyst on my spine
• Sleep apnea-especially during REM (I don't deep sleep). 
• I also found out that I have two bone spurs (Achilles and bottom of my foot), but also plantar fasciitis at the same spot. 

None of these things are that big of a deal to me. But they were a surprise to me nonetheless. My neurologist said that many, many of his patients with MS also have sleep apnea. I don't know the connection between the two, but obviously it adds to MS fatigue (way more than just being tired all the time). However, the treatment becomes extremely difficult when it comes to Occipital & Trigeminal neuralgia and Anesthesia Dolorosa.

My neurologist wanted to change 5 major things for me, but one is extremely expensive. The infusions are $153,000 for the first 5 and $60,000 for the next 3. 20-25% of that amount of money is beyond our means. Another medication, AMPYRA, "the walking pill," states you aren't accepted if you only have disability insurance. So, we had to wait until I could get on a new insurance with the new year.

My neurologist recommended:

1. Quitting Amantadine (typically a Parkinson's medication, but also sometimes used for MS fatigue). He said, "What, are we in the 1950s?" True, my neurologist from KC received her degree early in the 1980s. But I don't necessarily think that is the reason it was her go-to for fatigue. ha. He told me it probably isn't doing ANYTHING for me and I can just stop it. My body is so SEVERELY SENSITIVE that I have to go slower than most patients when I start or stop a medication. I asked twice to confirm I'd be okay. When I first filled the prescription here the pharmacist said he'd never heard of it being used for MS fatigue. So, when my neuro said it, I figured I could trust him entirely. I should have trusted my gut and tapered down slowly. My internist agreed that I should have tapered off, but my neuro was right that it wasn't doing a whole lot for my fatigue. Some, but not enough. 
2. Starting Adderall for fatigue and concentration.

---> The combination of the two, especially since I'd been on the Parkinson's med for YEARS made for a storm of misery. I ONLY slept, on average, about 15 hours for the ENTIRE week for FOUR weeks. It was horrible. I finally feel like the withdrawal symptoms are done and I can move forward. It messed me up in many ways for about 1.5 months. 

     3.   Medical marijuana. He said he's gotten SO many of his patients off many medications with it. My problem is that my pain is so severe (taking the "suicide disease," one of the most painful diseases known in the medical world, to a severity of 100 times). So, I need higher doses. My neurosurgeon, neurologist, and specialists have told me that CBD isn't enough on its own for all my diseases. I used to be against it FOR MYSELF. I didn't want the THC because it was psychoactive. But, so many of my meds are already psychoactive, synthetic, and damaging. As my body's built up a tolerance to the anti-seizure medications, some of my short term memory has come back. I can actually remember what YEAR it is!!! But, the pain has returned as well. A few of my medications are at the highest possible dose. So, I am limited in options. I've tried many different tinctures, creams, oils, salves, gummies, pills, drinks, and even suppositories (the U.S. has a lot further to go as compared to Europe. A friend in Spain had her anti-convulsant medications eat holes in her pancreas. So, she started medical marijuana suppositories and is off ALL of her medications for Trigeminal Neuralgia and Anesthesia Dolorosa.) Many CBD options do very little for me. I think if I was only using it for my depression, anxiety, or even small pains like MS pain, Fibromyalgia, or the Plantar Fasciitis & bone spurs, that the CBD or even CBD with a little THC would be enough. But it's not. So, I need high doses but it knocks me out. I can't function on it. I'm still experimenting to find the right combination without smoking or vaping. (Again, just for ME. If others choose it, I support them in whatever they and their doctor figure out.) I'm hoping I can find one that doesn't burn my throat (minor issue with some of them), decreases pain, but still leaves me able to function. 

     4.    Start Ampyra, the "walking pill." Most of my walking issues center around PAIN, fatigue, and imbalance. But, he believes it will help me a great deal.

     5.     Start LEMTRADA (https://www.lemtrada.com/about/lemtrada-at-a-glance?s_mcid=ps-LT-google-BrGeneral-Lemtrada-5Things&m_id=LTDCO25364WB). 

• First used for Leukemia patients, now used for MS patients who have failed 2 or more MS medications.
• Helps Leukemia, but can cause skin, blood, or thyroid cancer. More than 30% of patients in their study developed thyroid issues afterwards, but I don't know how many of those patients actually developed thyroid cancer. I'm already a high risk for thyroid cancer and my Kansas endocrinologist wanted to remove my thyroid at one point anyway. I don't know if this will disqualify me or not. 
• The high risk means that I will have to be monitored MONTHLY for AT LEAST 4 YEARS after the last treatment (5 years total or more). A nurse can come to my house to do the blood work each month, though. 
• 91% of patients had reactions to the infusions, so you are put on several medications before the infusions to counteract some of the possible side effects.
• Of the 14 medications for MS, this is the ONLY one that has been shown to improve SOME MS patient's meylination. One of my neurologist's patients had pain for 20 years (like me) and now has NONE. 
• I was SO scared to try another MS medication because each one has caused irreversible disabilities. But I also knew I needed to because this past year nerve damage was spreading to my left side (increased pain in my face, arm, and especially hand). They explained that I've continually gone down hill since 2012 (when I got pregnant) and that we've got to stop it or at least slow it down. Since my neurologist has MS himself, he is the most knowledgeable I've met and ONLY prescribes 4 of the 14 meds. It's crazy because when I started there were only 3 medications-all injections. He is on one himself and reassured me that they will keep a close eye on me. He doesn't take pharmaceutical kick backs for putting patients on newer medications. (I believe that was what my neurologist in Topeka did since he refused to take me off Tecfidera despite the fact that I had MAJOR issues-it started the Occipital Neuralgia and Trigeminal Neuralgia, as well as the worst diarrhea every day for 7.5 months, burning, flushing, and exacerbations in the first week.)

I'm scared because of all the risks, but it's the most promising medication for MS. I also like the idea of ONLY having 5 infusions one year, 3 the next, and then being DONE. (Some have to do another 3 one or two years after, though.) It may be a tough year, but I'm excited for what may lie ahead.

I just keep telling myself that I know I need to be on something. If something goes wrong, this is the best scenario for them to figure it out early. If I get cancer, I may lose weight...so that's a bonus. haha. Really, though, some severe MS patients also get chemotherapy. So, if it's the path for me to go on to eventually find relief and healing, then so be it. Of all the options, I feel like it's the best one for me. 

In the meantime I'm trying to make as many memories with my lil Kindergartener as possible, just in case things go badly. It doesn't mean I don't have faith or hope. I just hold onto true hope instead of false hope. Faith isn't about believing I can wish away everything uncomfortable with a few prayers. Granted, healing can be done by God at any time in miraculous ways, even with one simple prayer. But usually it takes a great deal of effort on my part first. It's looking forward knowing that the BEST will come as long as I turn to God and accept His will. I know there isn't an ounce of pain, or a single tear that won't be met with God's love, peace, grace, and blessings. Even if that means waiting until the next life. Either way, here goes nothing! 

(P.S. The process with the Risk Evaluation and Mitigation Strategy program/team is lengthy. I don't know exactly when I will start the infusions. I'll let people know via fb when it gets closer.)

40 Day Happiness Challenge (Let Go & Grow)

I've tweaked my 40 day happiness challenge I created, because I realized that I was trying to do too much. I haven't completed all of my 40 days challenges yet, but did get on Facebook last night (day 39).

I got side tracked for about a week and a half with my challenge because I was asked to speak in church on Christ-like characteristics. There were 9-10 attributes highlighted and I chose to focus on HOPE. It's my favorite word in the English language, for obvious reasons. It was wonderful to delve deep into hope; true hope. Sometime I'll share some of my thoughts, but for now I want to record my updated 40 day LET GO & GROW challenge I modified just a bit.

A few times a year I take a social media break. But often I returned shortly thereafter missing the void I'd created. I realized that instead of just taking something OUT, I have to FILL it with something positive. It's been a WONDERFUL experience. It turns out that about a month after I started the prophet admonished us to do something similar. Although one of my goals has been to highlight the New Testament, we were asked to highlight the Book of Mormon and read it in less than a month. It just so happens that I had bought a new "journal" edition of the Book of Mormon and another copy of the New Testament. So, I may modify that as well (my 40 by 40 goal).



Let GO                                            &                 GROW                                    DATE

Technology (Facebook for 40)	Spend quality time with loved ones
Grudge/Unforgiven	Write a letter and burn it {Bless and release}
Jealousy	Record Priesthood blessings
Thinking everyone else is happier	Eat rainbow of veggies and fruits
Little things (roll off my back)	Water Aerobics
Narrow vision of how things SHOULD be	20/20 scriptures/prayer for clearer vision
Fear ruling my life	List fears, make a chain, break through 1
Self Doubt	Write letters to myself and daughter
Misconception that Materialism + Physical = Success + Happiness	Camp
Addiction (sugar, emotional eating)	No sugar 30 days
Attachment to Money	Give to an organization/charity
Pride (not asking for help)	Memorize a scripture
Need to be certain	Plan a trip
Need to be in control	Yoga
Negative Body Image & comparing self-worth to physical image	Doll myself up, pedicure, hair, date night
Judgment	1 Random Act of Kindness
Past Misfortunes	Delete old emails and open tabs
Mistakes; Mourn failures but forget to celebrate victories	Bask in one simple pleasure
Perfectionism	One day everything with left hand
Toxic people	Drink more water (lemon water morning and 130 oz daily) to clean out toxins
Comparison (thief of joy)	3 Good Things
Other people’s opinions and expectations; chasing people	Highlight the New Testament
Belief that best days are behind me	Watch 1 sunset or 1 sunrise
Difficulty making decisions	Clean out car, closet, and clutter
Need to be more and do more	Read “Enough” book
Pushing myself too hard	In bed by 10:30 p.m.
Thinking my dreams aren’t important	New Bucket List
Procrastination	Take the 1st step to achieve a goal
Avoiding inner pain and root cause	15 min meditate “imagine the best”
Expectations/Idealism	Plan Christmas Gifts
Anger	New Theme Song
Influenced by others/Take on struggles	Every time taking on, pray to give to God
Imbalanced/Priorities	Re-establish morning routine with posted list
Thinking I’m damaged/broken	Take a picture of something imperfect & beautiful
Let go of yesterday and tomorrow; live in the moment	No phone all day long
Think life should be fair to be good	Send 4 cards
Finding Joy or comfort all the time	Paint 4 rocks & distribute to community
Satan’s lies/repeating negative thoughts	Snap Happy or mantra
Not facing truth/accountability	Journal “What’s the best version of me?”
Over thinking and fear of the unknown (Worrying is like praying for what you don’t want)	Expect the best, prepare for the worst, and give the rest to God journal (20 min scheduled)

40 day experiment...wish me luck!

This is my experiment I'm going to try for 40 days (and 40 nights :)) to find happiness and overcome issues I have in all parts of my life. I feel like I'm having one of those dreams where people can see all of me, because I'm exposing all of my issues. But, I decided to share because there might be one other soul out there who is thinking the same thing.

Ready to appreciate Fall and its symbols of letting go, metamorphosis, and beauty in the broken and fallen

I am too attached to technology, unbalanced, frustrated, jealous, and to an extent, stagnant. It is no surprise that as my body has built up a tolerance to my meds, my health as declined and my emotions have increased. My options towards a solution-or even a marked relief-have dwindled. I am so focused on refusing the 2nd brain surgery that my anxiety is at a height I don't know that I've ever experienced before. Obviously as my depression/anxiety/stress have increased, so have my pains.  At this point I'm desperate to do EVERYTHING I can to bring about a positive change in all facets of my life. 

I'm still working on my 40 by 40 goals (40 goals B4 I turn 40). Some of these goals I've already completed and others have been incorporated into this experiment. The biggest goal is to step back from technology, appreciate the blessings in each moment, journal through a specific issue each day, and fill the void with something good. I'm hoping to establish more balance, positivity, beneficial habits, and acknowledge my weaknesses and pains. Instead of ignoring, distracting, pushing away, numbing, or drowning out my sorrows, fears, depression, and pains, I decided on this experiment I created. What I'm doing isn't working, so here goes my new experiment.......wish me luck! 

LET GO                                                         &                            GROW

Technology (Facebook for 40)	Spend quality time with loved ones
Grudge/Unforgiven	Write a letter and burn it {Bless and release}
Jealousy	Record Priesthood blessings
Thinking everyone else is happier	Eat rainbow of veggies and fruits
Little things (roll off my back)	Water Aerobics
Narrow vision of how things SHOULD be	20/20 scriptures/prayer for clearer vision
Fear ruling my life	List fears, make a chain, break through 1
Self Doubt	Write letters to myself and daughter
Misconception that Materialism + Physical = Success + Happiness	Camp
Addiction (sugar, emotional eating)	No sugar 30 days
Attachment to Money	Give to an organization/charity
Pride (not asking for help)	Memorize 4 scriptures
Need to be certain	Plan a trip
Need to be in control	Yoga 1-2 times per week
Negative Body Image & comparing self-worth to physical image	Doll myself up, pedicure, hair, date night
Judgment	Random Act of Kindness
Past Misfortunes	Delete old emails and open tabs
Mistakes; Mourn failures but forget to celebrate victories	Forgive someone and communicate forgiveness
Perfectionism	One day everything with left hand
Toxic people	Drink more water (lemon water morning and 130 oz daily) to clean out toxins
Comparison (thief of joy)	3 Good Things
Other people’s opinions and expectations; chasing people	Highlight the New Testament
Belief that best days are behind me	Watch 1 sunset and 1 sunrise
Difficulty making decisions	Clean out car, closet, and clutter
Need to be more and do more	Read “Enough” book
Pushing myself too hard	In bed by 10p.m. forty nights
Thinking my dreams aren’t important	New Bucket List
Procrastination	Take the 1st step to achieve a goal
Avoiding inner pain and root cause	Journal & 15 min meditate/visualization
Expectations/Idealism	Plan Christmas Gifts
Anger	New Theme Song
Influenced by others/Take on struggles	Every time taking on, pray to give to God
Imbalanced/Priorities	Re-establish morning routine
Thinking I’m damaged/broken	Take a picture of something imperfect & beautiful
Let go of yesterday and tomorrow; live in the moment	No phone all day long
Think life should be fair to be good	Send 4 cards
Finding Joy or comfort all the time	Paint 4 rocks & distribute to community
Satan’s lies/repeating negative thoughts	Snap Happy or mantra
Not facing truth/accountability	Journal “What’s the best version of me?”
Over-thinking and fear of the unknown (Worrying is like praying for what you don’t want)	Expect the best, prepare for the worst, and give the rest to God journal (20 min scheduled)