Train Wreck

I don't know what it is about tragedies, accidents, and traumas. But it seems like there are two types of people on the scene: rubberneckers and heroes. One looks on, spreads their glimpse of the misery to everyone, and revels in the sorrow as they continue onward shaking their head. The other assesses the situation for what it is, lends a helping hand and follows through much akin to the Good Samaritan. The latter becomes a positive presence on the scene. 

With our latest struggles, I've been a bit surprised by some reactions. Some have been compassionate, helpful, sympathetic, and "mourned with" us. Others took what tiny glimpse of information they had and ran with it, typically talking about us instead of to us, often giving incorrect information to other passer-byers. 

I think more often than not, people don't want to believe that bad situations can happen to them. So, they gossip or give hilarious advice while judging from afar. (I'm guilty myself). Fear leads a lot of decisions. Other times I think well-meaning onlookers just don't believe they have much to offer or want to avoid awkward situations, so they quickly move on avoiding contact. 

Thankfully for me, I've witnessed a lot of "good Samaritans" and heroes in this difficult time. My husband would HATE for me to share this, but I wanted to share the lessons he has taught me about giving. 

My husband had been home from the ER a few days and wasn't recovering like he had the first time. We had no idea if he would be able to work and we discussed turning to the state for assistance (it's been three months and we are STILL waiting to hear. Their system was down, they've been backed up, and by the time they finally decide, we will all have insurance). Our grocery budget was $5/week, we cut down everything we could, and had no idea what our future held. A young man knocked on our door selling something door-to-door. I quickly picked up on his anxiety as he stood far from the door, struggled speaking, and diverted his eyes. I explained that we had no job and couldn't buy, but talked to him trying to give sympathy and a listening ear. A month earlier he was selling and was attacked with a tire iron, robbed, broke two teeth and his jaw, and this was his first day  back to work. He was living in a hotel and some stranger was babysitting his adorable 1.5 yr old while he went door-to-door. We talked about his time in foster care and he asked to use our bathroom. I can usually read people's hearts and I knew immediately that he was good and trustworthy. I let him in and as he was leaving, I explained to my kind-hearted hubby the guy's situation. My husband started stumbling to get his shoes on and asked that I get all the cash we had left ($12). My first thought was how much we needed the money. But my second thought was that this young man needed it more. We walked as a family and gave him the cash to keep. It may not have been much, but to us it was several weeks' worth of groceries. 

I don't share this to brag (because I was the wretch who thought we needed it more), but I am grateful for a husband who is inspired, loving and generous. I'm not saying you should give away ALL of your money and live in the poor house. Thankfully, we are now doing well and don't have to worry about groceries, toiletries or utilities. But, it has been a great lesson on humility, unavailable services, answered prayers, charity, and suffering from many around me. 

Some of my HEROES/SHEroes have offered help by:

*Calling a pizza delivery and sending us dinner from another country. 

*Scripture/thought group (texts daily). 

*Babysitting when both of us had no strength. 

*Cleaning my kitchen and talking to me. 

*Daily texts, emails or calls. 

*Driving me to doctors' appointments. 

*Giving money or jobs (and being understanding when progress is slow due to poor health). 

*Sending money and encouragement to see a doctor when I had no insurance but many fears. 

*Praying for us and spending time with us. 

*Talking to me at church even when I can't stand, see or hear well. 

*Offering rides, even if it is a 3 hr drive. 

*Inviting me to things and understanding when I can't attend. 

*Sending me fake hair filler so I'm not as self-conscious and offering their wig if need be. 

*and soooo many more I can't even list. 

The last several months (April to almost Sept) we have had some tough physical struggles, but I have kept it to myself for the most part. Because of just a few rubberneckers or funny reactions to earlier struggles (January especially), I isolated and minimized my situation. I didn't want to be a burden or to have to correct misconceptions or acknowledge my own "brokenness." It caused me to fight more of the battle alone, with the exception of our families. (We both have such incredible families). 

At one point specialists were checking both my husband and I for brain tumors. A specialist even said the hub's symptoms could also be MS and he may need a spinal tap next depending on his 2nd MRI results. Statistically speaking, I thought there was no way our luck was THAT bad. 

We still have tests and specialists to see for both of us. But, we have a direction, I think. Transient ischemic attack. My hubby's Opthamologist has been incredible with communication (he even called from his home, worried abt him, and had us call him back). 

I have had the opposite luck. A new neuro met with me quickly, ordered lots of tests and his earliest follow up appointment isn't until NEXT year. I'd already waited to meet because the schedule was backed up and I didn't have insurance. In OCTOBER, I will get in with a nurse praticioner for the neuro and dermatologist. In September I'm hoping to meet with an endocrinologist and MS specialist. I wish I didn't have to travel 1.5-3 hours away (one way) to visit doctors, but it is our situation. We have no idea what is going on with me, but it has been great to have the support of family and a few trusted friends. 

I used to think the WORST thing to happen would be dying. Then I started to die and lived through it. With the uncertainty of MS in the early years I thought the worst would be confined to a wheel chair or home bound. Now I feel lucky when I can use a wheel chair or walker to get around. Lately I've worried I'll be bald and blind by the end of the year. But, even if that happens, it won't be the WORST thing to happen. Sometimes I am overwhelmed by my daily struggle of symptoms and diseases. {Fatigue, worsening vision, hearing, walking, strength, sensation that bugs are crawling on me, shaking, cluster headaches/migraines, numbness, tingling, intestinal issues, cyst pain, nausea, dizziness, memory problems, hair loss/balding, stabbing pains, weight gain, etc}. Every day I have these miserable symptoms, but I also have GOOD things happen every day as well. 

I pray for answers to at least some of the new stabbing pains, head swelling, hair loss, and decline in vision. I hope I will be able to read and drive easily again. But this may simply be my new normal; in which case I will count it a huge win. It has been a devastating blow to my ego, since years ago I was told my best features are my eyes and hair. I've gone from teaching others how to read to needing others to read to me often. 

In the end, I'm incredibly grateful to have the love, support and true friendship of several wonderful people. The WORST in life would be to not know God and Christ... OR to have NO family or friends...OR to not live in a free country...OR to be an abused woman in horrific circumstances. Lately I found myself depressed by my worsening health, lack of good health care and services and stressors. But, when I really opened my eyes (figuratively), I saw how BLESSED I have been these past few months. 

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I decided today to share some of my recent struggles. I typically only share after I've had answers or have come through the worst of times. But lately I've thought that others may be struggling. I may be able to offer help, a listening ear or a helping hand. Or it may simply be part of my acceptance and healing/brightening of my own journey. By hiding away and building up walls, it has kept me from progressing and joy. It is what it is and for today, that is okay. 

Storms. Road blocks. Speed bumps. Accidents. U-turns. Construction. Ditches. Detours. We all face them in one way or another. I simply hope that today, and most days, I can be a positive influence on this journey of life we all share, instead of a gawking passerby all alone in my car never really stopping, seeing or living fully.

INSPIRE ME, not terrify me

For about 4 days I hit a bit of a road block. A space between where I am and where I want to be, if you will. Usually MS is my hardest of the 5 diseases I carry. (7 if you count Dysmetabolic Syndrome and Gall Bladder disease). But, this week PCOS (with bursting cysts, no insurance and just pushing through it) knocked me off my feet. Thankfully I had help from my in laws and now am doing much better. 

The MRT/LEAP plan is very specific and structured. With the hubs working 50-60 hrs each week and me in bed, I missed a bit of my plan for Phase 3/Phase 4. But, life just happens and you get back on that horse. :) Giddy up. 

Phase 1::: (the ONLY things I could eat for 7-10 days. I went for 7)

Chicken

Pinto Beans

Eggs

Sole (never did)

Wheat

White potato

Broccoli

Green Peas (never did)

Green Pepper

Cauliflower 

Apple

Cranberry 

Orange

Plum

Cheddar Cheese

Cottage cheese (b/c of whey, and my reaction, I have since cut it off)

Olive oil

Walnut oil (nah)

Carob (what is that? 😳)

Ginger (mmmnhnhn)

Honey

Black Pepper and Salt (chose Pink Himalayan Salt mostly) 

And that is IT. (Bold foods I ate regularly in the 7 days).

It was quite a bit of chicken, some eggs, some cheese (yay), and a whole lot of missing 1) Salads 2) Sandwiches (turkey lunch meat esp) 3) Chocolate. **In that order 😋

With each new PHASE, you have ONE new food you can add per day, according to your reaction in your blood work. 

PHASE 2:::

Added- 

Beef (not sure if my bod appreciated it)

Peach

Almond (Almond Milk)

Lemon

Grapefruit

I "cheated" at two birthday celebrations and paid for it. It was a good reminder for how my body doesn't like (aka loves to death) sugar. 

PHASE 3:::

Added-

MILK (need to try SKIM milk like I grew up with instead. Still not sure if I can do dairy, since I have an intolerance for whey and had gone off dairy for a month before the test). 

Cherry

Olive 

*pAuSe*

Curse you ovaries----pain, misery and bleh. Ha. Got off course. Gained some weight I had lost, then got back on track. 

PHASE 4:::

Added- 

Tomato

This is where I am right now. In Phase 4, but I will extend it beyond the 5 days. It helps to plan out breakfast, lunch and dinner. As well as using the Yummly free app and Pinterest to organize recipes (except for the delicious desserts I see people posting). :) {If anyone wants some ideas for recipes when you are so limited, just leave a comment or message me}.

Having some foods sparingly or completely eliminated has helped me identify my body's reaction to certain foods. It's a long process and sometimes hard to really know with a few foods/flavor enhancers on some sick days. But, overall it has been quite fabulous. (And limiting, but thankfully not forever). I really miss salads and sugar, especially chocolate (which I've cheated on 4 times). But if I can get to a point where I truly feel GOOD or even OKAY, it will be worth it. I may have an exception once a month, so I'm only having chocolate, turkey, or lettuce/spinach 12 times a year would be feasible for me. 

Weight loss in 18 days: 

almost 10 pounds

Inches lost in 18 days: (bust, arm, waist, hips) 5 inches

It has helped me considerably to track it with a planner (it is from 2013-2014, but does the trick). 

Hopefully I can start to post much more frequently. :) Not ready to post pix yet, but eventually. 

Cautiously Optimistic

Most people would say there is no secret to losing weight or maintaining a healthy weight.

Exercise and eat healthy. 

The end.

You'll feel good and reach your optimal health. 

Not true for me. For almost two DECADES, I have been the exception to that rule. Even when I exercised 3 hours every day, I only got down to a size 13/14 (9/10 on a few lucky pieces of clothing) and was still overweight by medical standards. I haven't had one experience of exercise in 17 years where I felt good after I was done. Instead, I lose my vision, hearing, strength, ability to walk (if I've done too much), intestines (you know what I mean), and so much more.  I haven't been able to run for 17 years or walk much for 3 years. 

I usually can relate to 80 yr olds or cancer patients more than I can to someone my age. I've borrowed walkers, people, and walls to get around and figured it was simply the "new me." If you see me out, you are seeing the best 30 min of me I'll have for a whole week. I've saved up energy for days and will pay for my hour excursion. I will always save the majority of my energy and strength for taking care of my daughter. Thankfully I have been able to manage (with some help from others). More often than not I'm equipped with my cooling vest, as kids inch away from me because I look like a terrorist bomber who forgot to hide my vest under my clothes. But, you'll see me happy, laughing, smiling, and inching forward because it was worth it and you've gotta make the best of any situation. 

Ever since I became preggo, my body is much worse. It was worth it, but I simply haven't been the same ever since. After every relapse or exacerbation, you have to relearn your body and limits. I've had several especially in the last year. I figured I was just getting worse and possibly moving into a secondary progressive  type of MS that many others experience. But, when I went to Idaho for nearly two months, I realized just how hard humidity is on me and gained a hope of progress. 

Retrospectively, I remember certain travels where I felt like I'd collapse in the middle of the road. It took me a while to realize my body can't cool itself down. Now I'm learning how invasive humidity is on my body. Looking back, I remember moments when my body was screaming at me because of humidity's suffocating grasp that refuses to release for hours or days. After a red eye flight, in the middle of an intensive graduate program and walking around NYC with my luggage in tow, I thought I'd crumble. Climbing up the steep hill of Jerusalem's Mount Scopus in my steel toe Doc Martins and heavy jeans after galavanting through the Old City in the heat of the Middle East, I was convinced I'd be taken out by a sherut after I fainted. So many times I would brush it off and not let anyone know how much I was struggling. Sure my vision, hearing, nausea, twitching muscles, pain, dizziness, and strength would be worse for days after, but I could manage. I'd just pray harder, laugh louder and move slower. 

After I experienced the stark contrast of a humid place, to a cool, dry place and back to beautiful Kansas humidity and ever changing weather, I am reminded of the role climate plays in my health but also find a bit of hope too. I knew a big reason for us going to Idaho was to work on my health. I thought I'd fix one aspect or gain some strength but instead, I think I just got on the right PATH.  

It will be a long journey, but in looking back, I can see why other attempts at controlling my body instead of letting my body control me has failed. 

I was going to wait to post on this because I usually fail and am the "exception" to everything. My body is hyper sensitive and I am ALWAYS THAT .01% of the population with weird reactions. 

I posted last year about Herbalife that helped me. I had hope. But, just like almost everything I've tried, it was short lived. I couldn't explain why it helped me tremendously the first month and then went downhill afterwards. I started a new MS med and excused a lot away because of my intense intestinal side effects. But, even after being off of the meds, I never could get a handle on things. 

When I went to Idaho, I tried an EXTREMELY restrictive diet. I've done restrictive before. This one was NO gluten, dairy, sugar, corn, and hardly any meat beyond turkey. I'll spare you the details, but after one month, I wasn't better. I was worse. But I researched many different diets and experiences other MS patients had with nutrition changes. One woman in the 70s read about the benefits of wheat grass. She had her husband mow the lawn and ate that. It took 6 years before she noticed a significant difference (following Swank diet I believe, focusing on reduced saturated fat). I also ate some crazy stuff during my month of a diet I wouldn't wish on anyone. :) 

(Pretty close to eating dirt and grass---Diatomaceous Earth, flax seed and wheat grass). 

(Some daiya was good. This was not my fave). 

Because my body struggles every day I cannot pin point my body's reactions to specific foods. I decided to get a blood test done to determine foods I am most sensitive to. I'd tried the skin test with one immunologist (diagnosis---allergic to sooooo many things, come get a weekly shot for 3-5 years). This test I did in Idaho is the MRT/LEAP and is the most accurate I could find. 

(After a week, these were the bruises left from a nurse jabbing, poking and prodding unsuccessfully with several IV needles....I was ready to give up. But, I went to a lab and they had no problem). 

The results were a mixture of surprising and expected. 

Some I expected that I was intolerant of (shrimp, aspartame, corn, canteloupe), one didn't show up (pineapple) and others were a surprise (spinach, lettuce, turkey, whey, fructose, vanilla, cocoa, several grains, tuna, onion, parsley, peanuts, sunflower seeds, sesame, pecan, tapioca, etc). Some I simply don't like and now I see that it is probably because of my intolerance. Others I ate on a daily basis (sandwiches and salads) and increased when I tried several different diets.  

So far, it has helped me by cutting out the inflammatory foods that my body craves but detests (or just detests). I also have learned the importance of variety and changing things up. I may have skewed my results by eliminating dairy, most meats, wheat, and sugar for the month prior to my test. But, I can tell a difference when I avoid the insulting foods and when I "cheat". 

Lookin back, I was incredibly frustrated by so many diets and had to change, alter or abort them because my body couldn't handle it. 

Herbalife-(1st month successful- then stopped helping) -fructose, vanilla, whey, too much salad. 

Weight Watchers- (couldn't eat allowed points or I'd gain---I usually have to eat 1,300-1,200 calories or I gain and take a month and a half to lose) -too much veggies that don't work with my bod. 

HCG (passed out)- too restrictive and ate some of my worst foods that are "healthy." 

RAW diet - no protein, lots of lettuce and spinach, almost passed out by day 3.5. 

...and so many others with the same results. 

I'd start out good and then in a week or two, it was like my body was rejecting the "super foods" I was filling up on. 

Another pattern my body has followed for the past 17 years is I get sinus infections, bronchitis and close to pneumonia several times a year. I have to go on multiple rounds of antibiotics and steroids. I gain 10-15 pounds, spend 2-3 months trying to take it off and then get sick again. A viscious, frustrating cycle. 

Since following the LEAP (Lifestyle eating and performance) plan, it is easier to identify how my body responds to certain foods. I've lost weight, inches, sleep better, and am not hungry all the time. I will update as I go, moving forward, cautiously optimistic. :) 

I also met with a different nutritionist who gave me a specialized anti-inflammatory diet. Once I'm done with my five/six phases of MRT/LEAP plan and have narrowed down the best foods for my body, I will transition to an anti-inflammatory diet with a focus on the WORD OF WISDOM. (No tea, meat sparingly, grains the staff of life, etc). I've researched so many different diets/eating plans, but always came back to the word of wisdom. There is a LOT of conflicting information out there and MS is such an elusive disease (nicknamed the mocking bird disease), that it is hard to pin point success with nutrition. In the end, I'm gonna trust God on this and see what happens. 

Doctrine and Covenants 89

1 A Word of Wisdom, for the benefit of the council of high priests, assembled in Kirtland, and the church, and also the saints in Zion--

2 To be sent greeting; not by commandment or constraint, but by revelation and the word of wisdom, showing forth the order and will of God in the temporal salvation of all saints in the last days--

3 Given for a principle with promise, adapted to the capacity of the weak and the weakest of all saints, who are or can be called saints.

I decided that I am the weakest saint I know (physically) and it is adapted for me, in the latter-days. Instead of trying all these other current fads or anecdotal successes on various diets, adapted to autoimmune diseases, I decided to give the WORD OF WISDOM a go. (Researched/Read: The China Study, Autoimmune Solution, Paleo, Wahl's protocol, Sugar Detox, the MS Recovery Diet, the Multiple Sclerosis Diet book, GAPS diet, Healing MS, Blue Zones diet, the Greek Diet, Eat Clean diet (Tosca Reno), Weil's Anti-Inflammatory Diet and others). 

**Disclaimer:::I'm not a doctor and this is my own personal experience. For the love of everything on this earth, consult a doctor for your health (not some Isagenix/Herbalife/Plexus/DoTerra/"It Works"/whatever MLM company's "consultant," my blog or some random neighbor's dog's second owner's aunt's second cousin's friend who also has MS, PCOS, IBS, Asthma, Hoshimoto's Thyroiditis, Gall Bladder disease, Tietze's Syndrome, Insulin Resistance, Dysmetabolic Syndrome or had a doc mess up, almost kill them and had internal bleeding with intestines failing first. I'm a unique jumble of diseases and a body falling apart. Everyone is different and it may be a unilateral experience for only me. I am simply sharing in case someone else can relate or benefit from my "experiment." I do NOT believe nutrition will CURE my disease(s), but I am hopeful it will benefit me). **

Cursed, blessed or somewhere in between

I started this journal (LIFE IS WHAT YOU MAKE IT) in Dec 2014. I have tried to make life positive and joyful. I've tried to find life lessons locked inside trials. I've tried making sense of bad luck and questionable outcomes. In the end, I've decided that sometimes life just happens and you can't make sense of it in the middle of the chapter. I call this chapter of our life, "cursed, yet blessed."

In about a month's time we have received bad news or questioned our survival skills daily. :)

Here are our highlights (starting with the night we arrived back in KS):

Railroad called back, hubby put in 2 weeks notice. Instead of working for 6-9 months as anticipated, we worked less than 2. I had anxiety about it all. I wasn't sure if my fear of having no work by the time we went back was real or if it was the anxiety over returning to an environment where I was basically home bound (I was able to go outside 3 times a week without problems and would return to a place where I can't go out once a week for an hour without problems). 

The job he was to work would have Wed/Thurs off. We arrived at midnight on Wednesday and he was bumped. The next day he was furloughed. Again. Not even one day of work. 

And then things kept getting a bit more difficult. 

A day or two later, back in the ER. 

ER doc said to see a specialist. 

Specialist changed our appointment. 

No medical coverage for the hubs (letter went to ID and back and we missed the deadline by one day). 

Car registration on old car (in need of brakes) expired. I rarely leave the house anyway, we had no work, so we decided to wait. 

Renter in our Topeka home actually clogged the toilet and flooded the bathroom a bit. Replaced parts. 

Replaced the stolen a/c. 

Denied disability medical benefits (apparently more than 80% of MS applicants are denied their first time. Most employ a disability lawyer. Moving between two states made the process more difficult). I was shocked, but figured that even though I struggle walking daily, fatigue makes basic cleaning and cooking abilities non existent, and am almost entirely home bound, I am still able to take care of very basic needs. So, I guess I'm good. I need help but can keep pushing forward. 

Other car to register $399.

Hubs got a job for $10-$12 an hour. 

Turns out the job equalled $3.75 an hour during training. 

After 3 days (40 hrs-long days), hubs was too sick. Couldn't work (either one of us), but understanding boss. 

Helped his friend (who helped us). 

Worked on brother's house a bit, but struggled some. 

Baby girl was sick. 

Health was a struggle for all, with me being the most "healthy" for a time. (Both of us struggled driving, walking, cleaning, etc). 

Renter in our home overflowed the washer, flooding the kitchen, hall, laundry closet and part of the living room. We found out after the fact and paid to fix it. 

Pink eye and ear infection. 

Bronchitis. 

Black widows in our current rental. 

Sinus infection, bronchitis and doc said if I'd waited one more day I'd be in a lot of trouble (on the edge of pneumonia). 

Doctor guessed a brain tumor, MRI. 

Negative MRI. No answers yet, more specialists, but no tumor. 

Everywhere we have turned for help has been ignored or delayed to the point of not happening. 

We have been deeply humbled and have reached the point where we have needed help. I thought Aug was bad with $600, two house payments, a MS relapse, a move and a haunted house was hard. Then I thought Jan/Feb with a furlough and no luck with employment was bad. This last month has trumped them all and  who knows when the ride will be over. 

In the end, it is what it is. We have been tremendously blessed, while also slightly cursed. 

Hub's dad noticed our car tags expired and helped us. My parents helped us with our rent, copays for hospitals, and groceries. A dear friend (who recently found out she has stomach cancer) brought us dinner that fed us for several meals and her hubby gave us both blessings. I got to watch a TV show with a friend (we haven't had TV or internet and I haven't been out much). Hub's parents watched our girl several times and buy us milk weekly. A very dear friend from the ward watched our lil cutie and took her shopping! Shoes, make up, a bouncy ball and fun on a playground. Tonight, the same friends brought us several meals for the next few weeks. A friend paid hubs $200 for a job that sustained us for 3 + weeks of no employment. Brother paid so fairly that we could go to three doctors, pay utilities and more. At the moment all 3 of us have insurance and antibiotics (and steroids too for me). It will change soon, but we are just living in the moment these days. 

Each time I've thought---we can make it five more days. We can make it one more day. I THINK I can make it 10 more minutes. But each time we have been able to persevere and keep going usually with a smile on our faces. Some days it has been easy (ish) to count our blessings and other times all I could say was, "It's a good day because ...we are alive."  I've stopped trying to make sense of things and figure out some hidden gem of knowledge in our trials. Now I'm just riding the wave, going with the flow, and grateful for those around us who are making life possible. 

In the end, I know we will be okay. Some people's' reactions are funny. Sometimes others have guessed and been off. But all in all, most people have been incredibly supportive, loving, helpful and generous. We laugh about our luck, but are simply grateful to be alive. We will survive. 

Stop Surviving; Unpack the Bags and LiVe

When I lived in Israel, after about 5 weeks, the 2000 intifada began. Much changed as chaos ensued throughout the land. We always had to have our bags packed, a charter plane was constantly scheduled and rescheduled, detours and changes in itineraries were followed under the direction of our leaders, President Faust checked on us daily and he allowed us to climb Mt. Siani before we left abruptly from the Holy Land. I was a part of the last of the three shifts as we exited Israel and the tanks were going off so closely that our windows rattled. It was the only day I was scared (despite the turmoil surrounding us for months). I remember one testimony meeting where a local bore her testimony in gratitude that even though her neighbor's home had been 'bombed,' hers was spared. I had never worried about surviving to this extent. We were watched over, protected, and blessed beyond measure. 

With my expedition to Africa, most of our luggage was dedicated to the 140 pounds of school and medical supplies we each brought to donate to five orphanages and the slums outside of Nairobi. When I returned to America, I only brought back souvenirs and the clothes I wore on my back. You cannot see that type of poverty and survival without a huge part of your heart being broken open and a little left behind. 

As I planned my European adventure for us 4 single gals, I thought about all aspects of an expedition of this magnitude. Castle stays in Ireland with a medieval banquet, country side tours with Bath, Stonehenge, film sites of Harry Potter and Pride and Prejudice in England, underwater tunnel from Great Britain to Paris, the Eiffel Tower, Louvre and double decker tours, night train through France and Italy, exploration under the Vatican and all over the Colloseum of Italy, sleeping in a monastery, meeting my Greek family, cruising through 5 Greek Isles and Turkey complete with a donkey ride up Santorini and standing in the home of my great grandfather were all on the itinerary. I was always conscious of my budget and keeping it relatively cheap ($4,500) for nearly a month. One way to 'save money' was to ONLY bring a purse and a carry on bag. I thought I'd save money on fees for each flight we took and figured by Italy, I would send home many of my souvenirs to leave space in my luggage. I nearly missed my flight from Italy to Greece because I couldn't ship out my souvenirs in Italy. Many flights I simply wore several outfits simultaneously so as to leave room for my precious finds. My luggage and most of my souvenirs survived the adventure and my experience was something I will treasure for eternity. 

All 3 of my travel goals had been met and the next month I met my husband. 6 months later we were sealed in the temple. Since then, I've moved A LOT. My MS got too bad, I needed to stay home with my daughter and my disease, energy and address have changed quite a bit. In 3 1/2 years, I have moved 6 times from all kinds of homes or apartments. Because of my health, it took me a LONG time to unpack each time. Usually with help from others. It seemed like every time we got comfortable and fully unpacked, we had to move again. Some have been great places and experiences and others have been down right miserable. Each move has brought on new or worsening symptoms and some relapses. But I think the worst has been that I've carried around literal and figurative baggage. 

At different stages of my life I have simply endured or survived (barely) and other times I've thrived. Looking back I think the times I was just "enduring to the end," I looked around at others and carried too much weight of what I thought I should look like, be able to do, own, and be. I welcomed the darkness as I stumbled, gazed downward and let fear take the wheel. It felt like there was no hope and no light at the end of the tunnel. But, I've been able to shake off the dirt, reach out and find hope and light again. 

Fast forward to these past few years and I've been in survival mode again, though. I had no idea how difficult humidity is for a person with MS. I went from going out daily to only being able to go out once a week (and spending most of my time in the car or bathroom). I went from cleaning, cooking, teaching, crafting, photography, exploring, socializing, touching many children's lives, visiting with family frequently, and balancing much to needing help with basic duties. If I cooked one meal, I paid for it for days after. Doing one load of dishes took me at least an hour because of the breaks I had to integrate. My cameras sat on shelves, laundry piled up for my husband, and my screaming baby/toddler couldn't understand why I couldn't lift her when she wanted comfort or she couldn't go outside again. I cannot explain to you the anguish of not being able to pick up my crying daughter, not being able to go outside to feel the sun for even ten minutes more than once a week, or constantly learning what my body could and could NOT do with each new symptom or exacerbation. My idea of what kind of a mom and wife I'd always wanted to be did not jive with my struggling body. I was surviving and BARELY at that.

But, I tried to smile, laugh and brush it off daily. I also rarely unpacked everything because I was always nervous that once I was comfortable that I'd move again or experience some drastic change. I am not saying every day was down right miserable with me lying on the bed day in and day out. Some days, yes, but overall, my little family of three tried to make the best of things. I made sure that my daughter prayed, played, laughed and learned. At a very young age she demonstrated OCD tendencies beyond typical developmental stages, so I've worked with her on things, as has our situation. It's been tough, but we've had much assistance along the way. 

I knew with us moving to Idaho for my husband to work with my dad on the temple, that it was temporary. I felt as though it was an opportunity to work on my health. We came at a beautiful time and I was able to go outside 3-4 days a week. Often I couldn't do much, but it was easier on me than Kansas. I had better doctors who listened and made a bit of progress. I tried eating a very strict diet (I'll write more about it later) that was gluten free, dairy free, sugar free and avoided most meats, condiments, and other 'luxuries.' I didn't get better, met with another nutritionist and am hopeful for what lies ahead with a mostly anti-inflammatory diet with roots in GAPS diet to heal my gut. (Along with a MRT/LEAP diet plan). 

At one point, I was especially frustrated because I was eating carefully, and increasingly struggling. Numbness and tingling in my extremities was now a daily occurrence without relief. My mom was one of 3 speakers for a RS birthday celebration focusing on, "What I wished I'd known back then [raising kids]." With her, she brought this quote tile I bought her many years back. 

"In all of living, have much fun and laughter. Life is to be enjoyed, not just endured." Gordon B. Hinckley

My mom's talk was hilarious, insightful and inspiring. By the end I struggled walking, went to one door and asked a lady to hold it open since I didn't have strength. Two girls went through the next set before I could reach it and one turned back. She asked if I was okay and I smiled and nonchalantly stated, "Yeah. I just have MS and struggle sometimes." My usual happy shrug was met with questions instead. This girl had told her husband last night that she had reached her breaking point. As she explained her symptoms, I could relate, understand and empathize with her. It is difficult to find a good neurologist and she was nervous to have a spinal tap. This disease can rob you of hope and replace your life with fear. Because it is so different for everyone, unpredictable and debilitating, you never know what to expect. But, there are similarities and I'm learning to open up about it instead of dealing with it alone. It helped renew me by meeting this cute girl and reminded me that we are all in this journey together. It turned out that I was the right person in the right place at the right time to help her. 

Shortly thereafter, the board for the railroad was moving quickly. My husband's managers told him it was good that he hadn't been called yet. Many guys took a borrow out and would return. He would probably only get a few weeks of work before being furloughed again. Since he had a great job in Idaho, they hoped he could ride out the wait. The next day he was called back. He had to give his two weeks notice and we were heading back for temporary work (hoping he at least works some instead of giving up this job, not having work there and no unemployment). I struggled because I have enjoyed being able to go outside a few times a week and being near family. 

I laughed when I saw one bag in my room that I haven't moved since we arrived. I didn't fully unpack. I started thinking about these past two years, especially. I haven't fully lived. I've enjoyed and laughed through parts of my life, but not all. Sometimes life is simply that way. We have stages in our lives where we are moving, changing, growing, hurting, struggling and surviving. But, if we let it continue in the same manner, we miss out on much joy, fun and laughter. 

Anyone who knows me knows I laugh a little too much. But, as my hope has dwindled, my joy has too. Instead of focusing on the fact that I can't clean, cook or pop out baby #10, like I envisioned years ago, I will focus on the joy I have today. I will unpack all my burdens, frustrations, comparisons, expectations, and remembrance of what I USED to be able to do. Instead, I'll unpack, look forward and find joy. I have found much joy in my daughter and my husband. But, over the past few years I have lost joy in myself. I haven't felt joy over my abilities, accomplishments or soul. I have more today than I ever thought I would have years ago. I also have much less than I anticipated as well. Sometimes I have looked around at others and focused too much on the NOT instead of what I have been blessed with. I've decided that I need to put on the blinders like those race horses ("Comparison is the thief of Joy"), set down my roots wherever my family is at the moment, and find joy in ALL parts of my life. 

50 shades of LOVE

I'm more of a black-and-white kind of gal and try to avoid the gray areas Satan often uses to pull or push us into the dark side. I haven't read the nastified book, "50 Shades of Grey," but hearing the weak plot convinced me that I wouldn't touch it with a 50 ft pole. (Not that I'm strong enough to lift a pole that huge, but you got what I was throwing down). 

I find it ironic that the film/book is coming out on Valentine's day, since it sounds like the furthest thing from a romance or love. And the main character's name is Christian?! He sounds like the antagonist to a real Christian. 

I've seen articles discussing the book and film and am appalled that anyone would support an entitled man into bondage, stalking, control, abuse, sadism and masochism who takes advantage of a naive virgin (because he is handsome and rich). Make the main character homeless, penniless, and outwardly dirty like he is inside and I think people would be outraged. 

At the chiropractors recently, the assistant was saying a radio report stated that the film should have been rated NC-17 because it had more skin shown and pushed the line more than any other rated R movie. I mentioned how I had just read a magazine article in their office about how poorly the book is written and how controlling the man is to the young girl. He chooses a gynecologist and has her examined at his house. He has the many girls sign papers where he can do anything he wants to them. I said I couldn't understand why people were accepting this instead of burning it and outraged. The lady next to me said it was a good book. Yes, it should have been rated higher than R, but it was good. 

I wonder if she has worked with abused and neglected kids. Of all abuse, I have seen that sexual abuse causes the most damage long term. (Just my experience). 

The Malaysian Film Censorship Board (LPF) denied a certificate to screen Fifty Shades of Grey in their country, Variety reports, thus canceling the movie's Feb. 12 expected released date in Malaysia.

LPF chairman Abdul Halim referred to the erotic book-turned-movie as being "more pornography than a movie," adding that the film contains scenes that "are not of natural sexual content."

America (and other countries), however report record-breaking pre-ticket sales. I used to think pornography and erotica were more of a male thing. But, that was me being naive. 

Over the years I have learned how damaging pornography is to relationships and society. Is there a serial murderer who wasn't addicted? Do you know what young girls these days are being told they should do as young men are viewing the demeaning, violent, raunchy filth for their "education?" How many marriages have crumbled under Satan's thumb? 

Before I was married, I witnessed miserable marriages and divorces from people in abusive, controlling, selfish, addicted relationships. I knew a few things I would never settle for: abusive and/or controlling hubby, demeaning attitudes or talk, addicted to pornography, substance abuse or gambling, or someone with Satan in their back pocket, avoiding looking upward. 

I decided I would rather be somewhat sad and single than miserably married throughout mortality. 

When I met my husband, we talked about anything and everything. We knew the best and the worst about each other by day 5 (we talked for 9 hrs straight only taking bathroom breaks---I couldn't get enough of him). Before my love, I thought you had to date a man for at least a year to understand his dark side. Addictions, selfishness levels, commitment, etc. But, I learned quickly my man was who I had been searching for my whole life. He made me want to be better without ever making me feel bad (demeaning, controlling, cruel). We decided what we would do with finances, media, if we never got pregnant, if I ended up in a wheelchair or bedridden, and how we would fortify our home against Satan. We developed plans to avoid pornography, "chores" around the house, temple attendance schedules, and boundaries of intimacy before and after marriage. 

The world would laugh and scoff at the fact that I was a virgin at 32 and didn't show full love until after I was married for time and all eternity. Society today would mock us for having security on our computers and even cell phones for grown adults. But I cannot put into words the appreciation and deep love that comes from waiting until you were joined in the temple. To unite entirely with ONLY one person the way God had intended. No regrets and only purity brings blessings Hollywood can't imagine or even come close to portraying. 

So here is my list of 50 shades of love (in no particular order) from my experience with my one-true-love. (Most people don't believe in soul mates. I believe it is rare, but possible). 

1. Intimacy w/in bonds of marriage (monogamy)

2. Never demeaning or controlling your spouse (I have seen marriages where one controls and the other becomes a shell of who they once were. It is like the life is sucked out of them. I used to think Satan's plan would have failed because we would have not grown and would have stayed the same. But, now I wonder if it would shrink and whither our spirits to almost nothing. Zombie, angst, misery always on edge as they walk over egg shells. Not Celestial at all). 

3. Kissing and saying, "I love you" every time we part

4. Reading scriptures and praying as a family daily

5. Telling me I'm beautiful and don't need to lose a pound when I get insecure about weight gain due to meds

6. Cooking, cleaning, and asking what he can do to help me when I have no strength (I could care less if he is loading the dishwasher different than I would. He's loading the dishwasher and being a partner!! No complaints here--just a whole lot of praise and kisses). 

7. Priesthood blessings

8. Giving me the best towel, biggest half of a treat, and best seat in the house

9. Massages

10. Holding and hugs

11. Talking about our dreams and planning our future (sometimes we roam around hardware stores dreaming about our home and pretending)

12. Date nights (we haven't had one for a while, but we will eventually). 

13. Encouraging me to never stop dreaming and asking how he can help me achieve

14. Amazing father who is usually on the same page as me with parenting. Our baby loves us both!!

15. Talking for hours many nights a week

16. When I crash too early, he takes me to bed and let's me sleep on

17. Going to the card isle and laughing our heads off for "date night" with diapers in hand. 

18. Road trips to no where

19. No pornography in our homes or on phones for our entire marriage

20. Intimacy as often as we both want it and respect, admiration and love throughout. 

21. His unconditional love for me has shown me how God and Christ see me. He has brought me closer to them because of his love for me. 

22. He doesn't communicate with exes and told me before marriage that he wanted a joint fb account for that reason (plus he doesn't really like fb). 

23. He works hard to provide for us

24. He reads to me at night and sometimes scratches my back until I fall asleep

25. Witness couple at Nauvoo temple

26. Always opens my doors

27. Calls me his Queen and our daughter his princess (and treats us accordingly)

28. Foot massages and when we had money, he encouraged me to get pedicures from time to time to relax and get out

29. Asked my mom to take me clothes shopping because I wouldn't during pregnancy (or really ever)

30. Bought me a computer when I was teaching (2 incomes makes a diff :)) so I could load my pictures and work on my book

31. Moved to Utah for me (I was planning on moving there, but when we prayed, we both felt like Utah first, then Kansas). 

32. He will watch chick flicks with me (here and there :))

33. I have never washed the toilet since marriage and rarely have taken out the trash. He calls me his queen and doesn't think I should have to do dirty work. 

34. Since a bad relapse, he has always done the laundry. (He washes, and I fold when I'm strong)

35. We hold hands all the time

36. He asks how I'm doing and means it

37. He can read me and encourages me to talk through things after I've had a bit of time to process

38. In the few disagreements we've had, we always come together and are never cruel in a discussion

39. We don't yell

40. I randomly try to scare him when he least expects it. He used to scare me often, but I got too used to it. :)

41. We both decided we will do all in our control to see both families each year. 

42. We never talk down to each other. He didn't want another mom and I didn't want another dad. We wanted to be equals in the journey. 

43. Every day we talk about how lucky we are to have each other and talk about what a great life we have (count our blessings in a sense)

44. Helps a lot with potty training and asks for fashion advice (does this match) when he dresses the toddler and we are going out. 

45. Randomly thanks me for saying, "yes," to marry him

46. Serves generously

47. Tells our lil 2 yr old, "You are beautiful like mom," and "you are sooo smart. You got that from your mama."

48. Family Home Evening, regular church attendance, prayers, and gospel discussions regularly 

49. Crazy family dance parties, hide-and-seek and chasing at this house almost daily (dances with me in the kitchen or wherever prob weekly)

50. We laugh daily, love often and may not be rich by the world's standard, but I feel eternally blessed and rich. 

I hope when my little girl grows up, she puts God first and finds a man as good as mine. If she can't find someone who eschews pornography or controlling bahaviors, is able to take her to the temple, never pushes her to do things she isn't comfortable with, talks her up instead of putting her down, gives her the best (butterflies, hope, encouragement, and love), then I hope she runs and finds joy in singleness until she finds him. 

I wish everyone became and found something great instead of playing around in the gray. 

Articles I've read recently: 

http://fightthenewdrug.org/get-the-facts/#sthash.sCTZLw20.dpbs

https://www.lifesitenews.com/static/even-the-co-stars-think-50-shades-of-grey-is-awful-rubbish-and-maybe-even-a.html

https://www.lifesitenews.com/blogs/david-vs.-goliath-wholesome-romance-old-fashioned-goes-head-to-head-with-50

http://m.cnsnews.com/news/article/susan-jones/afa-fifty-shades-grey-glamorizes-abuse-degrades-women

Sorry I couldn't find the news article where they were interviewing young guys and gals as they cried because of what guys think is acceptable. 

Wait and Keep Moving

It's no secret that things have been chaotic, confusing, and dismal at times, especially since we made the move for the railroad. Last year, my resolution was to simplify. BOY, did God help me achieve that one! We moved 3 times in 11 months (nearly everything I own is now broken, scratched or torn), I had the worst relapse of my life along with 2 other flare ups coupled with a slew of side effects because of new meds. Imagine having your upper body stuffed into an oven, bugs you can't see crawling all over you and you have the worst flu you've ever imagined every single day for 7.5 months. There were a few others (tongue swelling, hurting, itching, trouble walking, talking, etc, but the buggy, fire burnin, chained to the toilet experience was the most common). I learned to simplify and counted what mattered most. There were some great moments and some tough ones. Overall, it was the hardest year physically and financially. (It could have been much worse, but was difficult nonetheless).

Especially hard were the last 5 months of 2014. We were coming up short every month, but able to avoid debt in the beginning of 2014. But, with medical bills drowning us, we survived until we couldn't. After much prayer, we took a job with the railroad. The night of my husband's last day, someone hopped our fence and stole everything from our garden (except for the zucchini, which we had given the week before to all of our neighbors). I was mad and felt violated for 30 min and then shrugged my shoulders figuring they were desperate. We put money into selling our home and moved. Shortly thereafter someone stole our a/c unit (at most they would have made $40 from ours and the 15 other homes, church, and school they robbed, but will cost us thousands of dollars to replace). We stayed with my in-laws while I recovered from a flare up and then started living in a haunted house. We finally got the evil out and moved again. The first 8 weeks we only made $1,200 total. I don't know many people who can survive on $600 in a month, especially with a move, two house payments and attempts at taking care of the adorable, but wretched Topeka home. There were times we shook our heads and wondered if we had made a mistake. We went from coming up $500/mo short to coming up thousands short. I had never had credit card debt until this year. Quickly we maxed out our credit card on necessities. But, we knew God said to take this path and figured it would even out shortly. SIMPLIFY. 

I was much more cautious in my choice of focus for 2015. I had little hope with my health and decided to refocus. HOPE, Health, and Happiness. We spent little on Christmas and kept cutting back. 

(It turned out to be wonderful). 

Almost immediately after I decided at the end of December what I'd focus on, I had to go to the ER, was rear ended by a gem of a lady, and all 3 of us got sick. A few weeks after my hubby finished his training, he got very ill. In a matter of minutes, he went from talking, to dizzy, running/stumbling to the bathroom, vomitting, and then started to get confused and cold. His body temperature was severely low, he was confused, eyes were twitching and then he stopped responding. I was holding him up in the bathroom with one arm, calling 911 against my shoulder, and keeping a tiny vomit bowl in the other. For about 30 seconds I got scared and told my love that he couldn't leave me. We hadn't even celebrated our 3rd yr anniversary. The ambulance came, they took him to the ER and rushed him to CT. For about 30 min they suspected a stroke. I wondered stroke or heart attack. I was calm through it, though, because I had felt as though he would be okay. A few days later he was bumped off work, then furloughed. They first said two months. 

The next day, on our anniversary, we got the final call that the railroad furloughed 300 guys and most likely it will be until September. 

Let me digress a bit and share that we thought we had been cautious in our financial and professional decisions. In a blessing I had been told I'd have a house that I'd raise my daughter in. It was what we looked for and planned on living in Topeka for a long time. We were approved for $120,000 and prayed over 3 beautiful homes, but got a "NO." We reevaluated and decided to go cheaper since we knew we would have to replace the hub's truck with over 200k miles and a back seat barely fitting the babe. We prayed and felt "ok" about a home half the price of our approval. I almost backed out twice and had a feeling/impression that I would really be angry we bought the house in the second year. I couldn't see any other option, since we had seen every house in our budget, and wanted out of the crappy apartments. I thought the warning was just a preparation for when something like the plumbing or electrical went arwy. The next time I didn't want to lose our $1,500 earnest money. Ohhhh, to only be out $1,500 now. What a small sum. :)

Fast forward to now and it makes sense. On paper everything looked like it would work out. Banks agreed and were amazed at our credit. But, God knew medical would come up and change would arise sooner than we'd planned. Surprises and twists came when I had a plan and God had another.

Now we were furloughed, maxed out with debt and in 3 weeks we would have no money for mortgage, rent, electricity or even toilet paper or milk. I was despondent, scared and confused. It seemed like every time we took a step forward, we were pushed back twice as far. Nearly everything we tried wasn't working out. I started reasoning which bill I would miss first and decided that we were past being able to catch up and I considered the worst case scenario. I would lose the home, car and even my cell phone (my only internet connection and link to family and friends). I couldn't see how it could possibly work out. I had gone from a 2,100 sq ft home and had always managed to stay afloat. Now I was thinking we would lose everything, sell what I had and move into the in-laws with 100 or 200 sq ft. for all we owned.  But, I knew we weren't as lost as homeless or the many I saw across the world who were starving or wondering how they would literally love day-to-day. My husband has many talents and would get a job. I started to accept that if the worst happened, they were just things. This could be a "restart." My original plan was to have no debt (credit card) by the end of the year. This wasn't what I meant, but it was one way. A fourth option I hadn't considered. I needed the time to worry and grieve, but accepted it and became more open so God could teach me to really see. 

I decided that they were simply things. What really mattered was my phenomenal hubby and precious daughter. Waves of frustration or jealousy would surface, but only for a quick moment. In the beginning I would be envious of people who could buy whatever groceries they wanted, take trips or replace broken sunglasses, car brakes, or smoking blow driers without a second thought. But, reminiscing of the past or keepin jealousy at the success of others didn't do me any good. I decided that focusing on what I used to have or trying to relive the past makes you miss the beautiful blessings of the present. I remembered the Kenyans I encountered in the slums. I also couldn't worry myself to death over the future. That could blind me to the possibilities of the present and essentially my future if I was paralyzed by fear or frustration. 

 I started thinking in my head, "I am so happy for you that you got to take a trip to Jamaica/Hawaii/see your family. I hope more goodness comes your way!" (And I seriously started to mean it with all kinds of people in different situations I originally viewed as better than mine (financially or physically speaking). I went from 80% happy/20% jealous to a 20/80 reversal to 100% happy for them.) By simply wishing for the best for people in my head, I started having more hope and happiness with my own situation. 

Last year an amazing lady was inspired to help us when no one knew we were struggling and had no idea how we would move from one city to another. We planned on sacrificing, but now I'm sure I would have had another relapse in a time when we had no insurance. We held onto that for a long time knowing that God was aware of us. 

This past month has been an incredible lesson in having faith, waiting, humility, and compassion. I learned I have judged others in my head. I had experienced short periods of having no money, but not to this extent. I was prayin for a miracle because it seemed impossible. I could all of a sudden relate to many more people, but was still incredibly blessed! Several people have rendered incredible amounts of kindness from pizza to coming to help me change my daughter, to milk and bread or texts and phone calls. We have SO much to be thankful for, even if the "Joneses" disagree. 

I won't share all, but we tried being open to many possible options. We went to the temple and felt as though God would give just enough information, step-by-step into the darkness until he finally revealed His plan for us. Overall, I felt a message of "Wait for the answer, but keep moving forward." It sounds like a conundrum. But, I'd experienced it before with regard to travels, education and marriage. Wait, but don't sit in a corner covered in tears and chocolate wrappers. Sure, I did that on a couch with a cheesy movie playing in the background from time to time, but didn't live my life in doom and gloom. 

With prayer and a shifted perspective, I started to grasp more deeply this concept of "With God nothing is impossible," "in the Lord's Due Time," "Come What May, and Love it," and step into the darkness with a glimmer of light and the Savior by your side. Since the temple and that attitude change, I have been at peace and haven't looked back at what I had before or entertained questions of doubt. I think I should almost expect doubt to follow big life changes or inspirations. It's just part of the process. 

How many in the scriptures have had to wait and then conquered the seemingly or truly impossible with God by their side? What if they hadn't? Lot's wife couldn't let go and we know how she got smoked in the process. What if Moses had made it to the Red Sea, determined it was impossible and turned back to captivity or death? How much of history would be different? What if Abraham or even Isaac had said the journey didn't make sense and didn't follow through? What if Christ said, "Let this cup pass from me." Period. Not, "O my Father, if it be possible, let this cup pass from me: nevertheless not as I will, but as thou wilt." (Matthew 26:39) How would eternity be if Christ didn't fully accept God's will and timing in His life?

I think of the scripture, "Lord, I believe; help thou mine unbelief." (Mark 9:24). When I read that, I read it in the same breath. I don't think that is how it was said, but sometimes I do the same in my life. I have never doubted that God is real, all knowing, all powerful and omnipresent. What I have doubted in is His timing with some pivotal decisions and accomplishments. 

As I get older and witness more experiences of waiting and the lessons and blessings that come because of it, I see more of His perfect timing. With this recent scare and plentiful doubts, I've learned even more gratitude, patience, and trust in God. 

I said I was NOT going to move for another 2 years, but God has a hilarious sense of humor. I still don't know for sure, but it looks like we will be moving again. One would be permanent (I say that cautiously) or temporary until we get the call back for the railroad. But both are great opportunities and we will make it just fine until then. We won't be swimming in a vault of $mulla$ like Scrooge McDuck, but that is good since I'm a bad swimmer and somewhat claustrophobic. We have been blessed with enough even though a lot has gone wrong. In the end, I suppose it has gone wrong according to my time table and understanding, but "right" by God's eternal calculation. 

Here's to our next adventure with Hope, Health and Happiness.