Mountain Moving with a teaspoon or a shovel?

Have you ever been so sick that you stayed on the couch or in bed for several days? Have you ever been so sick that you had to stay inside for 6 or 7 whole days? Have you ever NOT been able to drive (broken car or another reason) for weeks or months and missed the freedom and independence? By the end were you going "Stir Crazy"? That has been my life for the last several years. I typically ONLY go out once a week. IF I go out more than that, I pay for it (more pain, vision, hearing and intestines are bad, more stabbing pains in eyes/face/head, increased nausea, fatigue and weakness, as well as twitching muscles or shakiness and more numbness and tingling). BUT, there are times that it is worth it. Lately I've been asking my hubby to take me on drives after he gets home from work. It is hard to go from working 14 hour days, being incredibly social, traveling, and visiting my family, to NOTHING. 

I suppose the past week or two it has gotten to me.

I've thought a lot lately about MOUNTAINS and the FAITH to move them. I always have had faith in God, Jesus and their power. At 4 or 5 I remember praying for things and believing they would happen. My little prayers were answered. When I was 8 or 9, I cried to my parents about how you knew the gospel of Jesus Christ (Church of JESUS CHRIST of Latter-day Saints) was true, I prayed and gained my own testimony with incredible confidence. Fast forward to when I was 19 and thought I was going blind and deaf, woke up with huge bruises for no reason, intestines screamed at me when I got too hot, had to stop exercising and gained 90 pounds in less than a year. I wondered if I had enough faith to move THIS mountain. 

I prayed EVERY SINGLE DAY for TWELVE years for healing. I believed that I could be healed IF it was God's will. But, I learned it was NOT God's will for me to be healed. So, I accepted it and dealt with it. In looking back, I think it was good that it took almost 5 years to discover what was wrong with me. I think it was good that I lived in denial for a long time afterwards too. I simply learned to adapt. 

• When I couldn't see, I turned my head in the direction of others talking and pretended like nothing was wrong until my vision returned. Or I sat or felt for a wall to balance myself until I could see again.
• When I couldn't hear, I learned how to read lips (not great, but enough to manage). I nodded a lot until my hearing returned. 
• When I couldn't see OR hear at the same time, I just nodded sporadically and waited.
• When I fell or dropped things, I just laughed it off.
• When I was dizzy, I learned how to move slower, sit more, and distract people with questions.
• When I was depressed, I learned to serve others and find out more about them.
• It took me a while to correlate my heat intolerance with my issues, but once I learned the connection I covered myself with ice packs, did more inside (a/c) and learned to always check where a trash can was (in case I had to vomit) and where a bathroom was in every place I visited.

I was 19 and scared, but quickly learned to just make the best of things. I learned that I could gain strength through God and Jesus with prayer and priesthood blessings. I had faith to move forward even when the answer was "NO" or "NOT YET." As new symptoms came with new relapses and new diseases have been added to my broken bod, I have adapted and pushed forward.

Fast forward to 2014 and 2015 and I started to wonder again if I could climb these mountains. It had grown to a mountain range! 

My daughter and I decided to color and my hands were working well enough for me to create this to visually express myself. 

2014 I thought was bad with a move, change in career, only being paid $600 the first two months, paying for THREE homes, a MS relapse, worsening side effects from my MS med (horrible diarrhea every single day for 7.5 months along with a bit of hair loss), and being robbed! 

It turns out those were more like HILLS. 

2015 was much worse with 

Two Furloughs.

Two Mini-Strokes.

FOUR robberies (incl Topeka).

Hair falling out so much that I was balding.

Stabbing eye/face/head pains with no answers for a while.

No internet or tv for a year, and $25-$5/week budget for groceries.

Sensation of bugs crawling all over and toenail ripped off (cursed MS).

Hubs not being able to work-didn't recover as quickly from 2nd mini-stroke.

Asking for help and being rejected or told to wait until we weren't nearly as desperate.

Depressing conversations like selling everything, breaking lease, moving in with family, and who would take care of our daughter if we both died or became bedridden or incapacitated in any way.

I felt hopeless.

But each time I felt supreme despair, someone would surprise me because they were inspired.

THANKFULLY, even though I didn't reach out enough or talk to enough about our struggles, there were some angels on earth who were inspired. It gave me hope and showed me that God IS aware of us. He worked MIRACLES through them and I'm eternally grateful. All while I was trying to climb the mountain and pretending like I was fine even as I was falling off a cliff. Kind of like when I started to die...I didn't reach out and pretended like I was fine. (Until I couldn't and collapsed at work, but then I just worked on my couch. Or when I ended up in the ER with my eyes rolling in the back of my head, slurring my words, etc). "I'm fine."

(I wish I had pictures of all of my angels on earth!)

Jesus said, "If ye have faith as a grain of mustard seed, ye shall say unto this mountain, Remove hence to yonder place; and it shall remove; and nothing shall be impossible unto you."

I never could imagine a situation where I would NEED to move a mountain. But, I believed anything was POSSIBLE with God. Lately, though, I've been doubting my own ability to move these mountains placed in front of me. The other day I read again about the pioneers who LITERALLY carved out stone from a mountain and MOVED it to the sacred spot in Salt Lake City. It took 40 years for them to finish the temple! There were many who sacrificed an incredible amount to build a temple that has blessed a prodigious amount of people. While I hope it doesn't take ME 40 freakin years, I HOPE that I can move this mountain. It may only bless my sweet lil family and me, but it sure would be a blessing!

Speaking specifically about my HEALTH mountain, I have thought about how stone by stone, I may have to do the work over an extended amount of time before I see great results. But what if it ONLY takes me a year before I see great results? All these years I've tried the world's way (HcG, pills, diets like Weight Watchers or Raw, shakes like Slim Fast or Herbalife, excessive exercise, etc). All failed attempts resulted in minimal success and a lot of frustration. WHY NOT TRY GOD's WAY? I always figured I was great with the Word of Wisdom (https://www.lds.org/topics/word-of-wisdom?lang=eng)  since I've never tasted alcohol, tea, coffee, tobacco, or recreational drugs. Heck, I've never even tasted things like Mountain Dew or Coke because I didn't want stimulants in my body (my sister's cardiologist was glad we didn't consume caffeine). But, it turns out I was focusing a lot on the do NOTs (and received blessings by not having those addictions) and not focusing enough on the DOs. The world and nutritionists teach the opposite...eat MORE meat->Protein every 3 hours focusing on animal sources and eat LESS grains! The word of wisdom says GRAINS are the foundation and staff of life. Then add a variety of fruits and vegetables with meat sparingly, specifically during winter, cold, or famine. I have changed my diet SLOWLY and in July started following the Word of Wisdom step by step (in small ways) and started losing weight. I also cut out sugar (one of my worst inflammatories). I did it July, August, and September and lost 5 pounds each month. January 1st I decided to jump all the way in with the Word of Wisdom by only eating meat three times a week, and using a variety of grains, fruits and vegetables. Within ONE month I lost 11.5 pounds! I've NEVER lost that much weight in a month and it was easy. I wasn't hungry, I didn't count calories and learned new foods I loved (brussels sprouts and artichokes). I had no idea plants had calcium, protein, and all I needed! I continue to lose weight and while I can't say I feel GREAT, I'm having a little less stabbing pains and a little more strength. This past Sunday I walked the ENTIRE time on my own. I don't know if I have done that for at least two years. 

I'm kicking myself for waiting 17-18 YEARS before I tried God's way. Until now, I feel like I was trying to move my mountain with a TEASPOON and found myself tired, overwhelmed and disappointed. Other times I was just circling the mountain over and over and over. I felt a bit like Anna in Frozen trying to climb a mountain. 

 

 On Sunday, I shared some of my testimony about this topic and an awesome gal shared this with me. 
I love it and it fits perfectly!

 For anyone else out there who has a mountain (or mountain RANGE) you are climbing, I hope you can reach out and gain strength, hope, and patience with yourself as you're moving forward. God moves mountains in different ways-sometimes we move the soil beneath our feet. Other times it is so steep that we have to get on our hands and knees. Sometimes there is a path already carved into the mountain so we can ride up the mountain more easily. But, you're not alone. I've been feeling alone off and on the past year. It's Satan whispering (or screaming) of the loneliness, fear and despair. Yesterday I underestimated the openness of Facebook and realized that I'm not actually alone in the journey. Thankfully I always have my husband and wonderful family (close and amazing in laws who have supported me SO much and my family who lives far away). But, it helps to have others who have climbed their own mountains who reach down to help me up.

Steps Christ would have climbed to meet Pilate

 Sometimes I have a hard time with who I used to be, what I used to be able to do and who I am now (with so many limitations). But, who I am as a spirit matters more than who I am physically. My whole soul is NOT just my body.

Thank you to those of you who have helped lift me physically, emotionally, and spiritually. Thank you to those of you who did for me what I couldn't do for myself physically. 

SAD --> WOW

Isn't is SAD how the Standard American Diet is so unbalanced? Most eat a great deal of processed foods, meat, sugars (in all its forms) and inflammatory foods. It leaves much less room for a variety of fresh fruits, vegetables, legumes, and grains. It's how I've eaten for quite some time. SAD.



With my new health issues (and some I've dealt with for a long time but didn't have a diagnosis)...Occipital Neuralgia, Alopecia Areata (or severe malnourishment due to side effects from my last MS med) and Fibromyalgia all on top of my other diseases have compounded to make me reach out for even more answers.

I tried some nutritionists (one wasn't great but helped me get the LEAP testing to figure out my most intolerant foods and the other helped me with anti-inflammatory diet and nutritional counseling---she was amazing). But, in the end, I've been quite limited because of my declining health. I can't cook and prep foods very often. So, as I've declined, I've turned more and more to processed foods. SAD.

(http://theconsciouslife.com/top-10-inflammatory-foods-to-avoid.htm)

With blessings and my desperation for almost 18 years, I have decided to jump ALL the way into the Word Of Wisdom Way! I've tried the world's way (all kinds of diets, protein every 3 hours, supplements, shakes, etc, etc, etc) and I just get worse and worse. I felt somewhat better when I increased my fruits, vegetables and grains and decreased my processed and sugary foods for those 12 weeks (July-Sept). Not great, but better. But, I didn't fully jump into the WORD OF WISDOM.

(https://www.lds.org/topics/word-of-wisdom?lang=eng)


So, I'm doing it. January 1st and I started a private (closed) group on Facebook for support and recipe sharing. I'm not going extreme (some Plant Based, WHOLE foods eaters don't eat ANY meat, eggs, oils, refined grains, transfats, or dairy but I think it is a personal decision and I'm not there yet). I'm simply cutting back on processed foods, sugars and transfats and instead filling my body with fruits, vegetables, legumes, and grains as close to God's creations as possible. (Less man-made and unnatural additions). It is such a personal thing how you interpret "meat sparingly," but I can say I don't think eating animal protein every 3 hours is sparingly. I've tried the world's way and am gonna give it a shot God's way (especially shared for the latter-days).


Here is what I did this year to help me make SMALL changes for long-lasting (ish) results:

1. Cut out my biggest inflammatory and addictive (whether it's psychological or physical, I didn't care) offender---sugar. Not ALL sugar, but sugar as in no candy, cakes, ice cream, chocolate, etc for 12 weeks. I also attended a few sessions of an addiction class. I was nervous people would think I was uber lame for coming for a sugar addiction, but everyone was cool. People were there for ALL KINDS of things and it helped me have a group to account to and share with so I stayed on track.
2. July- cut out sugar 
3. August- increased vegetable daily intake to 3 different vegetables in season 
4. September -3 dinners a week without meat (which helped me increase different grains and vegetables I hadn't used before or very often)

Here is what I will be doing to make it easier and long-lasting: (with my cute hubby's help because I can't cook or prep much)

1. 
   Once a week a week I will cook all of my grains, lentils, rice, beans, and squash with my hubby (1.5 hrs on Saturday)
   1. Squash – 45 min – 1 hr cooking in the oven.
   2. Wheat Berries- 1 ½ hour
   3. Barley pearls simmering on stove- 1 hr.
   4. Brown Rice in rice cooker
   5. Soak & rinse quinoa, cook in rice cooker when rice is done.
   6. Lentils-10 min
   7. Chop veggies and fruits
   8. Beans from cans- rinse and put ALL of above in various air tight containers.
   
   
   2. Meal plan
   -This past year our meal plan was typically on a plan for dinners
   M-Leftovers
   T-Mexican/Italian
   W-Soup/Salad
   Th-Microwave Meals
   F-Date Night (once a month or every other month) or Microwave
   Sa-Vegetarian
   Su-Crockpot
   
   THIS year I'm going to start with a foundation of grains and add in fruits, vegetables, and legumes, as well as plan out my breakfasts and lunches. I will blog about all of this aspect later on.
   
   3. Support from friends and family
   -Our private Facebook group begins January 1st and we may even get together as a group here in town if I'm up to it. Sharing recipes, foods, and laughing about mishaps and pinterest fails.
   
   
   Even if it ONLY helps a LITTLE, I'm down with it. Almost 18 years ago I gained 90 pounds in less than a year and thought I was going blind and deaf. It was frightening and I felt out of control. Since then I've gained more weight, more diseases and my body has controlled everything. In 2015 I lost 20 pounds (more than I've EVER been able to lose with all of my health problems). And that was just sort of following the word of wisdom (even when I brought back sugar Oct-Dec). IF I lose some more weight in the process...cool. But it isn't my focus. My focus is controlling my body (as much as possible) instead of letting it control me. HEALTH.
   
   It's an experiment of some sort. I've been a guinea pig for several doctors and decided to let God take the wheel. Who knows...maybe I'll get somewhere instead of running around in circles. 
   
   

12 Days of 2015

I have sent out family Christmas letters twice in my life. This year I didn't want to because 1) It sucked. 2) It's expensive and I'd rather spend my $mulla$ on visiting my family for the holidays.

But, I decided to do this year's E Family Christmas letter for 2015 via the www. (Because of privacy, I won't post pix of my little one---sorry, but if we're friends on fb, you've seen enough =)).

My first draft of our 2015 summary, in the note of "12 days of Christmas," went something like this...

1- 1 ambulance ride
2- 2 mini strokes, 2 furloughs, 2 moves
3- 3 new health issues for me (Occipital Neuralgia, Alopecia Areata, and Melasma)
4- 4 robberies in a little over a year
5- 5 months with little to NO work
6- 6 months of daily intense stabbing eye pain and 6 months before the state of KS finally decided on our application for assistance (they said it isn't typical wait time; we were just one of the unlucky ones with system crashes, changes, miscommunication on their part, etc). When we desperately needed help, I reached out to several sources and was turned away.
7- 7 times when I thought we wouldn't make it
8- 8 different specialists in various medical fields
9- 9 diseases in my one body (not including issues like melasma, insulin resistance and dystmetabolic syndrome which are just moderately annoying)
10- 10 different medical bills stacking up
11- 11 months of losing my hair and growing bald spots
12- 12 angels on earth who helped us financially with generously giving money (one anonymous).

I thought back on how much we survived when we wondered how we possibly could. There were scary moments, depressing moments, isolation, fear, frustration, and pain. I thought of how much my vision had opened figuratively and closed physically as I learned what it meant to really struggle to provide for basics and accomplish the mundane. My hubby and I had to have hard conversations about which utilities to pay, who would take care of our daughter if my husband died, and if we had to break our lease, move in with the in-laws and which items we would sell first if we lost everything. (Thankfully we got close to all happening, but didn't end up needing to deal with any of these possible, but hypothetical situations). I remembered how isolated I felt as my health declined, more friends talked about us than to us and judged us without knowing even half of our story, and the limitations we had with bad health, bad finances and a broken car. But, I also thought back to how much closer I felt to God and Jesus. How some friends reached out with a helping hand, listening ear and a call, text, or message. Some literally saved us from losing everything and fed & clothed us. How family members were our saving grace as they were inspired to offer assistance before we asked and even after we had asked more than once before. I am amazed at the heart and generosity of so many who were inspired at just the right moment when they knew little to nothing of the magnitude of our situation. While I knew it could always be worse, I learned to stop saying it!

This past month or two things have finally turned around for good I think (it's truthfully been difficult for a year and a half). Each time I was on the verge of hopelessness, some angel on earth would feel inspired to reach out to us. Every time I thought God wasn't there, He was right there and surprised me over and over. While it has been a tough year, it has also been a BLESSED year. I revised my "12 moments/memories of 2015," and came up with this instead...

12- Angels on Earth who saved us financially, physically and emotionally by giving
11- Babysitters for K bug who helped me immensely
10- Times this year I was able to get out and about ON MY OWN (not for a doctor's appointment or church).
9- Date nights I got with my hot hubby, many times with a free babysitter!!!
8- Family outings (day trips, drives, and even celebrating a few friend's birthdays)
7- Times I was amazed that we survived! I was amazed by God's tender mercies, miraculous assistance and renewed hope I felt.
6- Medical specialists who helped me in big and small ways.
5-$5/week grocery budget worked some weeks and we managed well (not always, but thank you cc companies, friends, and family).
4- Months of PERMANENT work at the same job! (We did have 1.5 months that we could have kept, but instead came back for the railroad which ended up giving us 0 more days of work).
3- Celebrated 3 years of marriage to my phenomenal best friend and 3 years of being mom to an incredible daughter.
2- Times I get to see my family this year!!!
1- Working, safe, reliable car.

Our family has gained a greater appreciation for our innumerable blessings, God's miraculous work, the generosity, love, and support of many wonderful friends and family, and a closer connection to our maker and our Savior. Our struggles pale in comparison to many others, but for us it was a struggle where we learned much through it all. Thank you to those of you, especially our angels on earth! Thank you to those who gave food, clothes, free babysitting, a call, text, message, card, and money. I am grateful that in the second half of this year we have been able to help others in need in small ways, as well. We are doing MUCH better now and I have tremendous hope for 2016. I am overcome with gratitude, peace and HOPE!

We hope that your 2016 is also incredible! May you see God's hand and feel the Savior's love in many ways.

Love,
US

Good or Bad?

Not my favorite test. People hate the dentist. I LOVE the dentist and dislike Ophthalmologist tests. =)

I've had new issues since April/May that got considerably worse through June-August and started getting a bit better in September. I mean, better-ish, all things considered. (Imagine instead of a million knives, just 1,000). haha

As is the case with my crazy body, when something new happens it involves quite the journey to find answers. I am NOT a textbook case in any sense of the word for any of my diseases. It is because I simply have so many compounding diseases. So, as I've bounced around from specialist to specialist, 

once again I've stumped them all. Each doctor's specialty does fit one aspect (hair loss or eye pain or headaches), but not all of the symptoms (swelling of the head and face pain haven't fit them either). There have been a few guesses as to some of the problems-optic neuritis, severe malnourishment from the Tecfidera which was in my system for over a year, a new autoimmune disease-alopecia something. Some of the treatments are-wait it out, live with it, let's inject your head with steroids and come back to see me. When the dermatologist repeated for the third time that the steroid injections will hurt (it is several injections-maybe 10?), I did listen a bit more intently. But, I shrugged my shoulders and said it was fine. He seemed concerned that I wasn't concerned. 

Pain. 

Psha. 

Been there. 

Done that. 

Doing it this very moment. 

I thought back to times the pain has been pretty intense, but I survived. 

I've had 5 spinal taps which includes 2 botched ones. My first spinal tap I kept telling them that they were supposed to check for something else, but I couldn't remember the 3rd thing the neuro wanted checked. They called me the next day and I had to get another spinal tap because they forgot to check for pressure. My body didn't have enough time to heal, so the spinal fluid was leaking out inside my body causing a spinal headache. Meh, I survived and two days later went with singles for a tiny Halloween California cruise. I spent a good amount of time lying down, but I didn't let it stop me. I danced a bit and have some good, but also painful memories of my time as a pea in a pod. (We were all vegetables. HAHAH)

My 3rd spinal tap the doctor had students watching him and he kept hitting my spine with the needle and moving it around but couldn't get in. He was ready to give up after his third failed attempt. I was rolled into a ball and told him he HAD to do it today. I kept encouraging him and telling him he could do it. I couldn't reschedule for the following day because I had a test at UNLV (this was at the Mayo Clinic in Arizona) and needed to drive back. I encouraged him to try again and each time he apologized I told him it was okay and tried to boost his confidence. He never could get into my spine. I did my fourth the following day (with Xray). Meh, I survived. I am forever grateful for that place!

Or that time when the doctor almost killed me and I kept getting worse and worse. I would go to work and twitch and shake on the floor while I had kids bring me their homework (case manager). I collapsed at work and got permission to work on my couch. I couldn't stand for more than 2 minutes without vomiting or passing out, my intestines stopped working entirely (it's painful after 5 days), I was bleeding over my kidneys (under the skin), eyes rolling in the back of my head, couldn't stand, etc, etc. While I could go to church, I would lie on the floor of the mother's lounge twitching until some startled nursing mom needed the room. I'd crawl/stumble out and have my roommate take me home. Until I couldn't go out anymore. I worked for months on my couch doing paperwork, crawling down the hall to vomit and come back to keep supporting myself. But, I didn't ask for a lot of help either (beyond someone else grocery shopping). I later learned I was most likely a few weeks from death or a coma. Meh, I survived. I didn't get answers for a while, but the spirit prompted me with words from a pharmacist months earlier while I lay in the ER. My brother had called me for my birthday, hung up and called my family for me. He used to work at a retirement home and said I was talking like his patients did right before they died. But, I was able to work on my couch until I was strong enough to work in the office and eventually was able to go for my Master's. (I had been accepted for an earlier program but being on the verge of death and then trying to recover makes it hard to accept. They pushed me to the next program and it turned out to be even better timing professionally). 

Oh, and remember that time that my OBGYN confused LABOR with a KIDNEY STONE? Even though I explained that my mom only felt back labor and my sister ONLY progresses with pitocin? So, I taught for two days while I was in labor. And kept calling the doctor to say the kidney stone STILL hadn't passed. I had my husband get me Depends and I prayed harder that the kidney stone would pass so I could gain control of my bladder again. I kept moving as well as I could until I got in with a Urologist five days later for a second opinion, since my OBGYN wouldn't listen. Turned out I never did have a kidney stone. The doc could have done a simple ultrasound to check, but never did. I went to the hospital and when the nurses called the other OBGYN to say that there was definitely amniotic fluid, he didn't believe them. It could have already been on their gloves. Do three more tests to confirm. Turned out I hardly had any amniotic fluid left-just two tiny pockets on one side and I was a high risk for infection. And then the doctor put me on Pitocin for 30 THIRTY, yes, 30 hours. I had refused to work with the one OBGYN who couldn't tell the diff between kidney and a baby. But the second one, wasn't fantastic at listening either. I don't tend to show the pain I'm in and most doctors aren't used to that, I guess. All in all, I was in labor for 6 days and finally got a c-section. The nurses joked about my horrible doctors, the cutest 7 pound kidney stone they'd seen, and some would come in just to meet us-"Oh! You're THAT couple everyone is talking about." They were amazed at how easily and quickly I was up and around so soon after a c-section. But, it is simply what I do. Push through the pain. When you can't see, listen. When you can't hear, feel. When you can't feel, sit down. When you can't sit down, reach out. Pray all along the way. Needing the hemorrhoidectomy to fix issues after the fact (half a year later) wasn't fun either. The surgeon and assistants couldn't believe how bad I was (after a month of bringing down inflammation so he could actually do the surgery). All while I finished my last year of teaching and balanced work with being a new mom of a baby who rarely slept. But, if I had been pregnant just 100 years earlier, she and I would have died. Thank goodness for modern medicine. 

But, back to pain in the present...

A few new hairs now stick straight up. I'm alfalfa over here, guys!

Turns out steroid injections do hurt. Not as bad as a serotonin syndrome or 6 days of labor or a botched spinal tap, but it most likely exacerbated my eye pain. My eyes, especially my right eye, felt like it would pop out of my head. The face, eye and head pain was so intense sometimes that I almost passed out. That isn't normal, but a few rare cases do have side effects of too much pressure behind the eyes from the injections. But, the fact that I've had issues for several months means there's something else going on. I was able to get in with a phenomenal ophthalmologist who actually did have some logical guesses without dismissing the things he can't make sense of. He thinks I have Lupus and/or Graves' Disease on top of everything else. Apparently it isn't super common, but someone with Hoshimoto's Thyroiditis can develop Graves' disease later too! I laughed and asked the doctor how it was possible that I may have gained 3 new autoimmune diseases in a few months. He said autoimmune diseases cluster together. Plus, if I am positive for lupus, I've had it for a long time (tested positive in 2002, but never an official diagnosis. It was later dismissed by a doc as MS was the main invader in my body). I seem to get new permanent diseases about every 3 years or so anyway. 

I left the doctor's office with a bit of a heavy heart. I'm in my mid 30s and how many more autoimmune diseases can I handle? May the resurrection come before I'm 45...kuz I can't imagine how many I'll have by then. A line from my patriarchal blessing kept going through my head over and over, "Satan won't let you go through life easily." I was depressed for an hour or two and then started focusing on God and the good I've had in my life. I began trying to find a silver lining to possible new diseases. Maybe I could make it into the Guinness Book of World Records. The woman with the most autoimmune diseases in one body. My mindset shifted as I figured that in the end, I'll survive, and it isn't the end. By focusing less on my trials, but more on ways I have seen God's hand in my life, it was easier to accept. 

A few people really helped me deal with it easily after that first hour or so.  A dear friend reached out to me because she felt inspired and had no idea what I was going through at the time. My sister-in-law and brother have been so kind. My family and friends have been a wonderful support (of course my incredible hubby and adorable lil girl are my rocks). In looking back at other times in my life where I have literally passed out from pain and felt quite alone, I can see that I wasn't (alone). I wondered if God truly loves me, but I don't wonder any more. I know He does love us. A lack of pain is not the same as love. Love comes through the pain. The sister missionaries came by twice this past week and as we ate, they asked how I don't get angry at God or feel like He has abandoned me. Several investigators have expressed their anger at God. There have been times (as mentioned above) that I HAVE felt angry and abandoned. But, thankfully I didn't dwell on that and in time have seen strength beyond my own capacity as I have been able to persevere. I accept the sorrow and sadness, because it is real. But, I don't dwell there. I don't focus so much on Satan or someone else's free agency that impacted me. When I do fall into a rut, I get a priesthood blessing and tap into sources of light God provided for the journey. (Scriptures, temple, more prayers, fasting, etc). I am NOT saying I have it all figured out. BOY, do I still have a long ways to go. But, I am saying that I have never gone wrong by turning to God, looking for the good, and pushing through. There is a lot of evil in the world that seems to be growing. It may be daunting and overwhelming. But, God is bigger, more powerful, and will come off conqueror. There is still a lot of good in the world. 

While dealing with the theft on our home in KS (again), we had to wait and visited a book store to kill time. I found these journals side by side. You could fill both full easily. But would it change you to just choose one to focus on day in and day out?

Better than bald or blind. :) hOpE

October-right before steroid injections. 

Just got steroid injections and I am either balding because I was so severely malnourished being on the MS med my neuro refused to take me off of. ...or I have alopecia, a new autoimmune disease. I've gone to several doctors and they're all stumped by the severe pain and swelling, but most likely it is just a new MS thing I'll deal with forever. My vision has changed (I was always 20/20 even though I consistently have shadows in my eyes) permanently, but all in all there is a good chance I won't be completely blind or bald like I thought I would. 

(It's still a possibility, but less of a possibility). 

I have been on my new medication for about a month. Ironically, it is for people who have the flu and I felt like I've had the flu every day for almost 18 years. It doesn't help much with my flu symptoms and I have some side effects, so I still can't handle my full dose. BUT, it is helping me with my extreme fatigue. :) it isn't a cure and I still have all kinds of issues. But I am able to do a little more of what I've had to avoid. To be able to cook and clean some is phenomenal. To dance EVERY day with my daughter is a dream. I've even been able to make our Halloween costumes (no sewing) and crocheted some blankets. In my single days (before my MS was really bad too), I was able to do a blanket in a few days. Last month I couldn't finish one blanket. But this month I was able to finish my Sept baby blanket and a whole other one. :) 

I'm not feeling great yet, but I'm good. And that is way better than bad!! 

Cutting out sugar for 12 weeks really jump started things as I have tried to control my body instead of letting it control me. Some people can do sweets in moderation. I'm not one of those people. Maybe it is because of my insulin resistance and PCOS. Maybe it is because of my Hoshimoto's Thyroiditis. Or maybe it is because of my IBS, food intolerances or genetics. Who knows. Either way, cutting it out for that long and attending a few addiction classes for my sugar addiction really empowered me. 

The combination of my new med and less sugar has made it possible for me to get closer to the Word of Wisdom. I've lost a bit of weight, gained some energy and have much more hope than I've ever had for my health (in almost 18 years). Hopefully getting up to a full dose on the "flu" med that restores neurotransmitters and getting even closer to the Word of Wisdom will rejuvenate my body, mind and whole soul.  

Finally a good neuro!

I have struggled finding good doctors here and have been frustrated by the long wait (typically 4 months) just to see a nurse praticioner or physician's assistant. Then when I actually meet with doctors they say things like, "Hmmm, that is strange," "I'm sure your hormones are off, but even if I did the tests I wouldn't know what to do with the information," "His soonest follow up appointment isn't until next year," and "Your doctor didn't refer you to a MS specialist?" 

I've struggled ever since I started Tecfidera (disease modifying MS drug) last year. I stopped it in November 2014, but it stayed in my system for 6 months. The strange thing is my body really freaked out after the drug should have been out of my body (they happened during the drug, but dramatically increased from May/June to Sept). 

•Hair loss/balding (left)

•Swollen head (left side) painful to touch, brush, shower, lie down, etc

•Stabbing pains in face and behind eyes (esp left side)

•Sensation that bugs were constantly crawling on me

•No hearing in left ear for 7 days (worse ever since)

•Severe depression

•Increased nausea, dizziness, fatigue, pain, weakness, trouble walking

•Menstrual changes and changes in skin

•Vision bad enough that reading became extremely difficult. I also have only driven myself twice in more than four months. (Mid Sept vision, headaches, eye pain and hair loss got better. Not great, but better). 

When I was born, my whole body was black from a lack of oxygen. I was 6 weeks early, had the cord wrapped around my neck multiple times and I was a 1 on the Apgar scale (10 is healthy, 0 is dead). My parents were told that most likely I'd die, but IF I DID live, I would be in a vegetative state. No walking, talking, or interacting. My doctor and dad were members of the Church of Jesus Christ of Latter-Day Saints and blessed me using the power of the priesthood. For three days all I did was open and close my hands. I did move up on the Apgar, but wasn't responsive in many ways. And then I completely changed and the doctor still calls me a miracle baby. I had no problems until right before I turned 19 (not related to traumatic birth). Fast forward to these days and I've wondered if I'm simply destined to be in a vegetative state. I like vegetables, but don't want to be one. 

I was frustrated that there was no endocrinologist in the whole town, the neurologist 1.5 hrs away had no clue what he was talking about (left the office three times with his computer and I'd ask him to clarify his {incorrect} statement but he was adamant that his questions/statements were legit as he back pedaled through half of them. He wasn't trying to "reinvent the wheel," but he questioned the Mayo Clinic and all other neurologists. It was my fault after all since I had changed to a new one (him). If the tests all come back negative (and MRI results), then I would have to go on Capaxone. Maybe another one they give to Leukemia patients since my body had rejected two different meds in seperate classes. Oh, and his next available follow up appointment wasn't until next year. I could meet with a nurse practicioner in 3-4 months. He spent about 10 minutes with me and refused to discuss NOT being on disease modifying MS meds, or treat my symptoms like fatigue). My last neurologist put me on Tecfidera. Within one week I had the worst exacerbation in my life. He was sure it wasn't related. The side effects were horrible. After I went on my first MS med (Betaseron injections I gave myself), I also had a bad exacerbation and have struggled walking ever since (never had a prob before). But with Tecfidera everything was many times worse (fatigue, dizziness, nausea, pain, walking, weakness, memory, etc). Having diarrhea 5-6 times a day every day for 7 months (1 week on another med for allergies brought it down to 3 times a day but then it went back to bad. I was on the drug for 7.5 months but had bad side effects longer than that). 

I knew MS doesn't cause hair loss, just like cancer doesn't cause loss. It's the meds. For a while the best guess for my new issues was a pituitary tumor, but when that and a few other things were ruled out I began suspecting a correlation between the Tecfidera and all my changes. My hair had been thinning out throughout the time I took the MS med. Sure, others didn't report it as a side effect, but it is a new drug. If there is a side effect to any medication, my body will tell you. 

Both neurologists refused to see a correlation. One laughed when I said I didn't want to try another disease modifying drug, as well. It was basically said that I'd not get the help I need when I had another exacerbation (high dose steroids) if I didn't follow instructions. MS patients go on a MS drug. Fit in this box. 

I was frustrated, depressed and hopeless. I had tried so much to make my health better. No sugar for 11+ weeks. Lots of prayers. More vegetables. Less processed foods. I cried because I WANT to eat a diet of little to no processed foods or sugars. But that requires an ability to cook, shop, and prepare food. 

In time I realized that while Satan may want me to be in a vegetative state (figuratively or literally), God doesn't. I had already embraced the idea of how it would be okay if I went bald. A friend who had gone through hair loss gave me tremendous hope and peace. Plus, I decided I'd never have to do my hair and would save money (no shampoo, conditioner and less shower time). I'd already dealt with the fear of losing my vision, hearing, walking, Husband, home, car, possessions, being homebound, etc. (Thankfully I've been spared from most). Being bedridden and/or having my cognition decline so drastically that I lose myself were a few new fears of mine. I've had times in the past 17 years where I'm conscious but can't see, hear, remember basic things, or talk. It is frustrating. What if that became my new normal? How many exacerbations or MS meds would it take? 

But then I decided to have hope instead. I didn't feel it much, but I renewed my conviction to pray daily for it. I decided to believe in another miracle, BUT IF NOT I'd move forward in hope that it would be okay no matter what happens. When I refused to embrace Satan's plan for my life, looking down, focusing only inward, and wanting to give up, a shift occurred. Hope was restored. I again decided that whatever happens is the BEST for me eternally. 

THEN I met with two neurologists 3 hrs away at a university medical facility. Instead of 10 minutes for the appointment, I was there for two hours. I had written out a 3 page summary of my history and went in with little expectations. The doctors were shocked at how bad my neurologists have been. Before I could even suggest my desires for treatment, the MS specialist said she had worked with a FEW patients like me (get much worse with disease modifying drugs). Her suggestion was to not go on any MS drug, have regular scans, and see how it goes. She then put me on a medication they often give to people with the flu. It helps with fatigue, range of motion and balances chemicals (neurotransmitters). She also guessed that my hair loss IS related to the medication. She explained that I was severely malnourished for too long and even though the offending culprit has left my body, my hair was still showing the negative impact. Hair cycles every 6-12 months. She guesses that some things will be permanent (optic neuritis-stabbing pains in and around eyes), but the hair loss may not be permanent. 

My first week on the new med I had nausea, worsening migraines, insomnia, and shook a lot! But I did notice a tiny improvement in my fatigue. Lately the shaking has dramatically decreased, nausea is bearable and the headaches are better along with Mgrain from Young Living. 

Now I am getting even more energy. I don't expect it to fix everything or make me a marathon runner. But if I can go outside TWICE in a week, play with my daughter easily, do a load of laundry and dishes once...it would be a first in years for me. But if not, I'm just glad for the little improvements and subsiding side effects. 

H

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Limbo should be a party game, not a lifestyle

We've lived in limbo for a year, but now we are ready to sit down at the party. Or at least for a portion of the limbo party. :)

We still don't know what the railroad holds in the future. The career change, involving God every step of the way, has been quite the roller coaster ride. I remember once being stuck upside down on the top of a loop of a roller coaster. We were stuck for quite some time. My brother lost his shades and wallet as all of us hung in anticipation of freedom. It took quite some time and some passengers got sick, scared and loud. We looked around with our nauseas upside down view of joy surrounding us as other roller coasters and rides continued on. Most people enjoying their other rides didn't even notice that we were stagnant and scared. 

Between our recent health and financial issues the past year, we have had a good amount of nausea regarding our future, fear of how long the wait will be, and a loss of our wallet and shade from the radiating heat. 

Thankfully things are improving, even though it is moving slower than I had hoped for as fear dissipates and hope ensues. My hard working hubby is the first temp worker the company has hired and they are excited to have him. They know he will most likely return to the railroad whenever/if ever they call because they can't pay (benefits and pay check) comparably. But each time a furlough comes through he can return to this company. For the first time since May all 3 of us will be insured (despite our multiple attempts for coverage). We are quite hopeful for the future as we finally have stability. 

My health isn't getting much better and being in a small town means waiting half a year to meet with specialized doctors (hours away). My hair continues to fall out, my bald spot is getting worse and the pain in my face and behind my eyes is intense, an increase in the sensation that bugs are crawling on me, numbness and tingling, nausea, dizziness, stabbing pains, and my vision is still bad enough that reading has been difficult for several months. I also haven't driven more than 3 months, but it is fine since we have only one working car anyway. 

This past week (before the good news) I struggled because I felt so stagnant with little hope of light on the horizon. My wonderful husband said, "it will get better and all I need is you and my daughter. We have a good life." My response was that I simply needed to lower my expectations to nothing so I didn't keep getting my hopes up and being crushed. Thankfully the fear and frustrations didn't last long after I continued to talk to my husband. My sweet 2.5 yr old gave me hugs, patted me, kissed me and said, "You okay, mom? I here. You safe. It okay. I wove you." I'm very lucky to have my understanding, patient best friend as my companion through this bumpy ride and a sweet daughter to open my eyes a bit more. 

Even though I still struggle, some pain on my head is better (it doesn't hurt every time I shower, lie down or brush my hair). My vision on some days makes reading bearable. The swelling on my head on some days is better. My depression is a bit better too. I also have been able to hear out of my left ear with no major problems. Usually things have gotten better (head swelling x3, hearing, insomnia, and vomiting with stabbing pains behind eyes with priesthood blessings. I call it my safety harness in the stuck roller coaster). I'd count all of the small/slow improvements as a win-win-win. (And thank goodness for the help I've received too). Win. 

Since then, I've arranged for 3 specialists appointments for the next 3 months who sound like they will be better than the ones I've met with recently. My husband has permanent work. And I have some great things to look forward to as cooler fall temperatures approach. 

I've been reminded that I can hope, pray and move towards my goals. But if I get stuck on my timetable instead of God's, that stringent expectation will cause me to fall or become stagnant. Fear of the unknown and excessive worry places too much burden on my shoulders instead of placing it all in God's hands. All I can do is hope for my dreams, pray for my goals, accept God's timetable, and move forward-no matter how slow I go. I may take a few detours, but as long as I involve God in the process, righteous desires will come to pass.