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. 

CardED and ReWaRdeD

I'm part of a card club that meets once a month. Sometimes I've missed because of my health, but I enjoy the times I can create my own cards and attend. :) 

Here are a few I've created...

Have a FAN{TACHE}TIC birthday

Snow globe with sayings of "Merry and Bright" or "Tis the Season."

I may have a glitter obsession. 

Have yoursELF a Merry little Christmas

This last one doesn't have the additions I used on the others (Life is good and sandals). 

I miss teaching and my creative expression. So, on good weeks I've made sticker charts for my lil girl. It has worked quite well (going to sleep without crying or screaming, staying in bed til the sun comes up {or Daddy goes to work}, and eating TWO different foods for a meal at her chair). 

Rewards have been a tiny toy ($0.25-$0.10), park/slide time, or playing with her friends (sometimes it is a babysitter she loves while I go to the doctor or out with my hubby for dinner). 

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.