Good or Bad?

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

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

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

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

Pain. 

Psha. 

Been there. 

Done that. 

Doing it this very moment. 

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

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

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

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

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

But, back to pain in the present...

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

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

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

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

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

Better than bald or blind. :) hOpE

October-right before steroid injections. 

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

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

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

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

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

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

Finally a good neuro!

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

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

•Hair loss/balding (left)

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

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

•Sensation that bugs were constantly crawling on me

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

•Severe depression

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

•Menstrual changes and changes in skin

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

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

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

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

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

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

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

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

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

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

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

H

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P

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Limbo should be a party game, not a lifestyle

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

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

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

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

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

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

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

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

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

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.