I've never smelled a rose

The idiom, "Stop and smell the roses," has always been lost on me.

I was born without a real sense of smell. I used to joke that my Mom had an amazing sniffer and a horrible memory while my Dad had a horrible sense of smell and an amazing memory. I got jipped because I got the bad nose and the bad memory.

I didn't realize how many things smelled until I lived with a roommate who commented on smells she loved. Most people don't talk about their love for so many smells.
Rain smells?
Dirt and grass? Are they good or bad smells?
Skunks and Tuna Fish doNOT smell the same to everyone? (They do to my dad and me. I only know it is a skunk if I'm on the road and tuna fish is in the kitchen. If there was ever a skunk in a kitchen, it would entirely throw me off).

Flowers, however, I knew smelled. I've just never smelled one. Sometimes I ask people to describe smells, but usually it just falls flat. I'm okay with it because I've never known anything different.

Some say it's a blessing and others call it a curse. Some may add it to my list of disabilities. I just call it a lack of whiff-ability. However, apparently there is a legitimate medical term for being born without a real sense of smell. A sickness led me to a fantastic ENT (and office staff) who led me to the real term:

Congenital Anosmia

{Side note: Now that my face has changed, it's harder for me to feel how much my sinus infections have progressed. Recently I could feel a sinus infection coming on and unsuccessfully tried getting in with my family doctor. I didn't want it to progress quickly and follow the same path of Urgent Care doctor--> minimal prescription--> "wait a week"--> admitted to the hospital with a failed lumbar puncture and 4 days of IV steroids/antibiotics, like last time. The increase in pressure is also much harder on me with anesthesia dolorosa. Thankfully, I got in with a wonderful ENT (and amazing nurses/assistants) and got it cleared up quickly. My first visit was a bit of a blur. I had flashbacks from waking up in my surgery because I did a CT scan before I met with the doctor. I cried silently and swiftly wiped away my tears. But I couldn't stop shaking. It was hard to focus on the doctor. He showed me I have a deviated septum and even though he didn't mention surgery at all, my mind immediately went there. Nooooo. I also mentioned that I didn't hear as well out of my right ear after my surgery. I didn't delve into the details, because honestly I just wanted to leave the office (PTSD).

Immediately after my minor brain surgery I felt like an ice pick was being shoved down my ear. I couldn't hear as well and always felt like I needed to pop my ear. When I'd visited the Urgent Care for my cough, the week after surgery, she mentioned that I had a Eustachian tube dysfunction and it should return to normal after my sickness passed. (The next week I had developed pneumonia, UTI, and a sinus infection, which led me to a relaxing, extended stay at the KU hospital. At the time I only knew I had a cough and couldn't tell the other infections spread. I get sinus infections several times every year, but all I knew after the surgery was that I coughed and passed out a few times. Oh, and I was slowly being tortured to death. But the regular ol' sinus infection wasn't anywhere near my radar).

My sickness passed, but the need to pop my ear lasted for about 6 months. (It popped for a minute or two on the airplane in March, but didn't last). In that amount of time my hearing has come back, but not fully. I worry with MS exacerbations that new issues become permanent disabilities. I always have buzzing/ringing in my ears (19 years) and when my MS gets worse, my hearing can come and go or the ringing increases significantly in either ear. However, since my surgery it is primarily in my right ear.

Thankfully my incredible ENT scheduled a hearing test and a follow up. Even though I struggled a bit, it was nothing compared to the first visit. I met some awesome workers and found that my left ear is EXCEPTIONAL and my right ear is VERY GOOD. Both are in great range, but my right is slightly less perceptive. My right ear used to be my better ear, but because of my MS and worse neuralgia on that side, it is the one that reacts worse. My pains have simply increased and it's just a small part of it all. Nevertheless, I found out my deviated septum is not significant, it isn't related to my lack of smell, and there's a name for my sad lil sniffer.}

Are side notes allowed to be that LOOOONG?


Lately I've been a bit obsessed with BUTTERFLIES. I've joked that I'm in my cocoon phase. I started as more of a caterpillar. Too many rolls and at first glance it looks like I have a few too many legs (with my walker). And then my failed little surgery put me in a dark place with a whole lot of transformation. I haven't escaped yet or risen in the least. But, I like the idea that I can morph into something beautiful. Eventually.

I can't smell the roses and I've been forced to STOP more times than I'd like to count. But at least I can look for the roses and find the incredible creatures God had created as a reminder that darkness lifts, beauty prevails, and we will eventually rise.

Happiness is a butterfly, which when pursued, is always just beyond your grasp, but which, if you will sit down quietly, may alight upon you.      

Nathaniel Hawthorne

Adding wings to caterpillars does not create butterflies, it creates awkward and dysfunctional caterpillars. Butterflies are created through transformation. 

The butterfly counts not months but moments, and has time enough.
What the caterpillar calls the end of the world the master calls a butterfly.

Sometimes the WRONG one is the RIGHT one to lead you to the BEST one

I was an "older" single in Utah and remember one fireside in particular. My friends and I came earlier so we could have good seats. Later, an older lady sat next to me and right before it started, an usher came to say, "Can you move? There isn't enough room for this woman's husband." I was just a single, so moving me was easier than an older lady WITH someone. She needed the softer seat, so I moved, but I did it begrudgingly. I sat by myself and felt alone.

John Bytheway and his wife were speaking at the fireside (meeting). He had been single well past his peers and some people were critical. He was doing the best he could to progress, with one aspect of progression being building a family. But, he hadn't found his eternal companion yet. He had prayed along the way and sometimes dated girls where it didn't work out. He was so confused because he had felt good about the different relationships at the time.

Then he said, "Sometimes the WRONG one is the RIGHT one to lead you to the BEST one."

{This is NOT to say that disobeying a commandment or doing wrong will lead us to good. "Wickedness never was happiness." Some people will date someone who isn't good for them or we simply make wrong choices that go against God's counsel. Later we are surprised to realize the depth of consequences from our negative choices. We've all done it, learn from it, and move forward if we look above for assistance, input, and if necessary, repentance & forgiveness.}

This statement by John Bytheway has run through my head too much the past year. We did NOT even make $20,000 last year. Before starting school, jobs were not working out (except for a few that would mean not doing school or one that required Mike being gone from 7:30 a.m. to midnight every day/night. He had to quit because of my health issues, though). We felt strongly that Mike should do the intensive school program. There were a few times we questioned our inspirations and the ability for us to survive for a whole year. Since it was a technical college, they had limited funds and other establishments wouldn't loan anything additional. It left us with only $770/mo from August to May. I'm really good with money, but no magician. In time we felt strongly that somehow it would work out.  It took another huge leap of faith, especially because the previous two years resulted in frighteningly bad finances and struggles. In 2015, there were several months were we didn't make any money and even one job where Mike got less than $4/hr. On top of the lack of funds, we had 4 robberies, 2 ER visits, a "Peeping Tom," frightening & confusing health problems for both of us, often two house payments, and no help from several people/places that usually help others in need. There were months where we brought in nothing: $0/mo income, no food stamps, no unemployment, no bishop's storehouse, no health insurance, or anything else despite our applications and requests as there were many delays. {Thankfully there were some friends and family who were inspired and we were blessed step by step.} So, obviously this move forward into school without a job scared us that it would be another 2 steps shoved backwards just like the years before had turned out to be.

At this point in my life I should be confident in the inspirations I've received and know that doubt often follows powerful promptings. I knew I'd been inspired down to small details throughout my life and even knew when things would be hard. However, they were always much, much harder than I ever expected. For example, when we were looking at homes to buy, with our excellent credit score, savings, and job, we qualified for a home twice the amount of the one we chose. I felt that we should choose a much cheaper, older, smaller home than the ones we'd been exploring. I was inspired to know that the home would be okay for us, but that I'd hate it the second year of ownership. I imagined a few thousand dollars being sunk by bad plumbing or electrical issues. If ONLY it were a few thousand dollars! It was so much worse than I imagined. But, in the end, it was okay. Another time, I remember crying and crying when the railroad called back four months after furlough. I explained my fears and feelings that by the time we returned to Kansas, we would have given up a good job and would be furloughed again before working one single day. The night we pulled into our driveway, back at our rental, we learned that he had in fact been furloughed right before his shift. The first furlough with the railroad put hundreds out of a job. This time they furloughed thousands across the nation. Sadly, the job we left in Idaho was no longer available, either.

Joining the railroad felt so right, and yet it was the worst financial decision we had ever made. WHY did we feel so good about it when it went so horribly wrong?

It took me a while before I found the positive blessings hidden behind wretched fears and struggles.

We learned a great deal of compassion and understanding for others struggling. There are so many in the world who were in a much more tragic and dire situation than us. We were not starving, living on the streets, or in a war-torn country, absolutely alone, or entirely hopeless. There were others we knew needed more help than our little family in the middle of the USA.

Each time I thought we'd maxed out our blessings and credit cards, I was surprised to find we had just enough intervention to carry on.

We learned what matters most and if we lost every physical thing, we would be a-okay.

I had help weekly with my worsening health and my husband's intense schedule.

We learned God is aware of us and others are incredibly inspired. I learned I was loved and not forgotten.

We learned to acknowledge our weaknesses, ask for help, and to fully accept service. {SO much easier to give than receive, honestly}.

My husband and I are quite nonjudgemental, but I learned that we still had some judgements and assumptions that were narrow minded with regard to employment, resources, and a few extra limitations.

The most dramatic twist of fate in our path of survival was our journey of jobs. In 2014, my husband's company's health coverage was significantly worse than previous years. As my health worsened, so did our finances. My husband always wanted to have rentals and drive trains. He got both dreams and so much more...or less. =) A 'bad' job (poor coverage and not enough pay or opportunities to move up) led to the WORST job (Union Pacific) that was the RIGHT job to lead us to the BEST job and path of education. The struggles led to re-evaluation of our occupational path and taught my hubby that he can be successful in intensive training and testing. Before the railroad, we'd talked about education and possible opportunities. Dead-end jobs pushed us to so many more opportunities and open doors.

Before my husband completed his 48 credit hours (in TWO semesters with all A's and one B), he had multiple job offers. He decided on one job of the three offered. THIRTY minutes after he decided which job to take, the Union Pacific called to take him off furlough! Years after furlough, the timing was impeccable. We moved forward with the job that had good pay and the easiest opportunity to continue education. In one year we had gone through the darkest tunnel of our lives and came out the other side to the light. We saw the beautifully orchestrated outcome of hard work, sacrifice, inspiration, and especially intervention.

Stumbling through the dark tunnel as you chase the elusive light at the end is usually when change happens. Sporadic glimmers of light give a dull glow that keeps you moving forward, but sometimes feeling your way through the rough path makes you think that you are alone. It isn't until the end, that you see you weren't alone. None of us are alone. The darkness can be suffocating and even painful in every way possible. But thank HEAVENS for the LIGHT of the WORLD!

I am so grateful for those who lent their lights to me, those who lifted me when I'd fallen, and helped make the past year of education and now the BEST job we've ever had become a reality. When you're in the middle of trials it seems as though it will never end. But, thankfully as long as we continually turn to God, He can make the seemingly impossible, POSSIBLE.

Bless you all for being my BEST supporters. <3 <3 <3

Can I have FAITH and NOT be healed? Does God still LOVE me?

I'm not one of those people who thinks you have to say *just* the right thing to me. If your words tumble out in an awkward mess about my suffering or diseases, I'm just happy you thought of me. Some people have said some crazy things to me regarding my Anesthesia Dolorosa, but I know their intentions are wonderful. Plus, I forget things like you wouldn't believe and words squirt out of my mouth faster than I can suck them back in. I fumble, jumble, grumble and bumble. It takes a lot to offend me and heck, I might even forget it entirely. So never worry about saying or asking the right/wrong thing. I'm an open book these days with thick skin if you don't count the right side of my face and head. haha

But one woman's words struck me to the core of my soul and rattled me weak and broken. She had the BEST intentions in the world. (I have NO bad feelings towards her, btw--> not now and not then).

She and another gal were visiting me even though she knew I was struggling talking. They brought us yummy food and talked for a bit. The woman's first language was not English, so I wasn't sure if she quite understood everything in my situation. She did, to an extent, because she too had Trigeminal Neuralgia. Her story was much shorter than mine and was like most wherein she visited with a neurologist once and was put on 1-2 anti-seizure medications and has had no problems since. She pulled out her two prescription bottles. I had to tell her 3 times that I had tried one of them but my body rejected it and the other one I was currently on (at a much higher dose and several others). I explained that I'm glad her neurologist was good, but I already had TWO neurologists AND a neurosurgeon. (Many people don't understand that what I have is 100000000000000000000000000 times worse than TN-the suicide disease). I love connecting with others who have one of my many diseases-there's a sisterhood in finding someone who has dealt with some of the same pains and struggles. I cried a little but told her how grateful I was that she found relief and was one of those who doesn't have to suffer anymore. She recommended I pray.

The part that struck my heart like a machete, Thor's hammer, the black plague, and a harpoon was when she said, "I asked my husband WHY did I get this miracle? Why was it all taken away? I thought I was going to die and now I don't." Her husband said, "You got a miracle because God loves you."

"...because God LOVES YOU."

I couldn't hold back my tears, but hugged, said good-bye, and sucked in my breath in hopes of keeping the floodgates in until they reached their car. I felt like my breath had been taken away and replaced with rancid poison. (Can poison become rancid?)

I crumbled to the floor and sobbed, bawled, screamed, and howled all at once. I banged my fists against my tingly, weak legs and didn't care how many knives, electric bolts, bugs, punches, scorpion stings, burning, or pounding happened in my face or head. I already wanted to die every minute of every day. Why in the world would it be so in my face (pun intended) that I wasn't healed?

There are very few times in my life that I have grieved so harshly and loudly. Usually my jerk reaction is to numb myself with chocolate, a movie, or sleep until I could regain my composure/strength. This time, though, I went to the scriptures. I read over and over about Christ begging God if there was any other way. He asked 3 times.

Some people have told me that I don't have enough faith or I'm not thinking positively enough. Now, I'm not equating my struggle to Christ's because I know it PALES in comparison. But, Christ fell on his face and pled with his Father in Heaven for relief. And He did not get it. Instead he suffered even MORE. I looked up the apostle Paul (Saul) and his "thorn" in his flesh that would not depart despite his pleas 3 times. He continued on ward despite being imprisoned 2 times, ship wrecked 3 times, stoned, 5 times whipped with 39 stripes, 3 times beaten by rods, faced robbers & conniving people, suffered hunger, thirst, homelessness, sleeplessness, cold, and eventually martyred.

Was God's response cruel? Did He not love Paul or Christ or anyone else who has begged and pleaded and NOT been healed? Did God abandon those who suffered endlessly and only visit those he loved (as evidenced by their 'thorns' or diseases being taken away)? Should any of them have prayed MORE? (**Three is symbolic Biblically as WHOLE or COMPLETE. Often times it is used as a figurative number instead of a literal number. It may literally have been 3 times, but it may have been many more than that. 3 decades? 3 stages of rising and falling hope? Hope, crushed hope, rising hope, shattered hope, baby-step hope, asteroid fallen hope? 3 missions? 3 parts of the night? Either way, I don't know for sure.**)

God said, "My GRACE is sufficient for thee" (I feel like a failure mom and wife at times. But if I keep God as my companion, His grace will make up the difference. As all 3 of us raise my daughter (husband, me, and God), she will become her best self. I don't have to do it all on my own.)

He continued, "My strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me. Therefore I take pleasure in infirmities, in reproaches, in necessities, in persecutions, in distresses for Christ's sake: for when I am WEAK, then am I STRONG."

I never understood this like I did that day on my knees. First I feel in utter and complete sorrow crushed by the weight of my burdens. Next I prayed, read, prayed, and read until I understood that God DOES love me EVEN when he does NOT heal me.

I am the WEAKEST I have ever been in my life. I was the weakest physically, emotionally, spiritually, and mentally. And yet these incessant pains are teaching me a lot about myself, my strength, and God's power. I'm learning that I HAVE to take time for myself and heal instead of just deal. I cannot run faster than I'm able. (Ahem, I haven't been able to run for 19 years or half of my life, but you get the sentiment). I'm talking to God even more than I ever have before. I've had a very close relationship with God and Christ from a VERY young age. But, this depth of pain has also brought about a depth of closeness and connection that I haven't had before. While I do NOT rejoice in this AT ALL-bless your heart Paul-I do rejoice in the connections I've made with friends, family, and my Father in Heaven.

I still have pains each day that are unbearable. I still have nightmares or PTSD triggers from waking up in my little brain surgery. I still can't do many things without pain. I still mourn the days when I could talk, laugh, and smile whenever and however much I wanted to. Whether I was in a bed, wheelchair, country across the world from my home, or mountain top--->I miss that. Truthfully I may never (in this life) be able to talk, eat, sing, laugh, smile, brush my teeth, shower, etc without paying for it and being forced to stop. But, for better or for worse my pains are reminding me to turn PAIN into POWER and to really look to who has ALL POWER. And that is becoming a strength in my weakness.

I have a new SUPER POWER!

I don't mean to brag or anything, but I have a new super power. You know how super heroes often gain their powers through a freak accident? Yeah, that's pretty much me.

What is my magnificent power, you ask??

-->I can tell time withOUT a watch or being outside!<--

Okay, so I can only tell time with 6 pm and 9 pm., but I can still tell you when 6 or 9 are near. I could be in a movie theater or a bunker and every single day I could tell you when it's getting close to 6 or 9 p.m.

Bam.

Mind blown? (haha-pun intended)

I mean, don't be jealous or anything, but it's a new thing I can do. My husband says if he ever becomes a super hero his special gift will be that he can see the color orange REALLY well. I mean, all shades of orange with exquisite clarity. Pretty sure we'd be a powerhouse couple. Not quite sure which villain we could conquer but I'm almost positive it will be epic. ish.

It's been 15 weeks since my failed little brain surgery. You know how you start counting babies' lives in days, then weeks, then months...and then years? I'm still at the counting-by-weeks stage of counting the successes and changes, but I'm close to counting by months. I'm continually learning new limitations and every time I think I've figured out the right medication, sleep, talking, outside time, & rest schedules, I get hit with a whammy of a day and have to re-evaluate. With MS I had to do this a lot, but there are a lot more components this time. I may do well with 10 hours of sleep, smile only 5 times, talk 10 minutes spaced through the day, scratch my itchy face 3 times, space out when I shower and brush my teeth, take my meds 6 times a day on the dot, but get up and down too much and pay for it dearly.

But, I'm learning and repeat constantly, turn pain into POWER.

Here are the things that are changing/improving (as long as I don't do too much, make sure to sleep enough, and stay up on my anti seizure meds):

• I have minimal pains in the morning until 10 a.m. Depending on what I did the day (or 3 days before), I can even have minimal pains until 11 a.m. Sleep is a huge deal. 
• I still have that spot by my right temple that gets super cold whenever I drink or eat something cold, even mildly cold. Sometimes I do it just to remind myself that it's healing. It may be healing in a very odd way, but it's changing.
• I still always feel like I need root canals on 8-10 of my teeth, have a horrible ear infection, always need to 'pop' my right ear, sensation of bugs crawling under my skin, and am in an unquenchable fire with knives and electric bolts...but I'm not as bad until about 5 pm. The intensity is usually bearable, depending on what I've done. I actually feel like I can live this way until evening time hits. Then this Cinderella turns into a pumpkin. Stroke o' 6!
• My thyroid was the most inflamed it's ever been and had attached to surrounding tissues. Thankfully my nodules (growths) have stabilized some. ...so, I don't have to have another biopsy for now. =) WHOOP. WHOOP! Swallowing and pain are still an issue, but it's improving some.
• I can talk some at night now. FOR REALS. I still have to be super careful and if I talked too much in the day, then I can't much. My husband and daughter have learned some sign language and we use my notebook less. 
• I have been able to drive to some appointments on my own. Bless this weather and modern medicine. (And your prayers)
• My pains get quite bad around 6 and 9 and I can't seem to get my anti seizure meds strong enough or early enough to stop it before it's bad. But, I can live with it. We are now at the point (between my neurosurgeon, 2 neurologists, and I) where we are staying at the doses of all medications. My neurosurgeon also went into more detail of just how RARE it is that I have anesthesia dolorosa after this particular surgery. The 0.8% AD, I mentioned before, is usually with the surgeries where they completely kill the nerve. Go figure my body is THAT sensitive and RARE. He didn't have figures on how many actually develop AD with radio frequency lesioning of the TN, but I'm the first he's ever known. I feel like I should have earned a sticker or a sucker for my good behavior and survival, but instead he walked out with my old CBD spray bottle. =) He has recommended CBD to several, but I'm the first to follow through and experiment with various brands and types. So he was really grateful to have my information and recommendations. 

I think the BIGGEST improvement or 'blessing' of anesthesia dolorosa is that I am learning what works and what doesn't. I'm learning even more than ever before what my body needs and my motivation has never been higher to do what is best for my body. Before there were so many factors that came into play when I tried something new. (Medication, alternative approach, schedule, positive thinking, etc). It's easier for someone to say they cured MS, headaches/migraines, fatigue, weakness, colds, pain, etc. with this or that. Double blind studies on lifestyle changes aren't found too often for a variety of reasons. Many people shout claims of cures purely on anecdotal evidence, especially when it comes to my various diseases. But, I can tell you if something works or not based on how bad the electric jolts buckle my body in half.

I have found these things help the absolute most (physically speaking and in this order):

1. Anti seizure medications
2. Priesthood and Prayers
3. CBD (spray with peppermint)
4. Massages, chiropractor, and other stress reducing practices
5. Counseling/Meditation/Tapping/Alternative stuff

I am not to the point of saying I'm GRATEFUL for anesthesia dolorosa and Occipital and Trigeminal neuralgia. NOT YET. BUT, I am grateful for what it's teaching me. I am putting my health as top priority and doing all I can to make the pains lessen. EVERYTHING!!! Before when I just had my 7 diseases (MS specifically), if I got less sleep, was up and down too much, or got too hot, I'd pay for it. But, it wasn't earth shattering every day. I would get extreme fatigue, nausea, dizziness, loss of vision, hearing, diarrhea, and weakness, but I had learned to deal with that. My health was a priority, but not top. I have always tried to push myself past the point of exhaustion. Now I'm so desperate that I have so little desire to do things that aren't great for my body. If I get too little sleep, I pay for it so severely that I commit to not let that happen again. I used to worry about everyone else's comfort before my own-even strangers. Now I'm learning to do what is best for me apologetically. I guess if you want a cure for being a people pleaser, I found a solution. Step one-wake up in the middle of a minimally invasive brain surgery; #2-get your brain to not understand numbness and lesions in the nerves. #3-you might be cured. haha. OR just learn from me that while you shouldn't toss your kids and hubs to the wayside, you should put your health as a priority. Especially before you get to a point of no return. 

ONE day 

OR 

DAY one

You decide.

Prayer pauses

Today is Easter and a poignant one at that for me this year.

I have thought a great deal about prayer, my will, God's will, and pauses. Please forgive me as I attempt to toss my jumbled thoughts all over the screen.

I don't remember the first prayer I uttered, but I do remember the first, "No," or pause in response I ever received. I was 5 and had lost my cheap, but prized little ring. I lost it outside in our driveway of rocks that seemed a mile long. I prayed for days and searched up and down relentlessly for the ring. Then my little dejected heart gave way to the realization that I would not find it. Oh, to be 5 again with my greatest devastation centered on a $0.25 ring!

I remember when I was 10 and saw my mother crumble to the floor when she learned her dear sister was dead. I felt a depth of sorrow I hadn't felt before because she was my aunt whom I adored with all my heart. She had rewritten her Will to leave everything to me and I knew there were questions and an investigation. I didn't quite understand the information about a pyromaniac taking pictures outside her trailer full of flames. I trekked through the charred remains of her home that I had stayed at for 10 days the summer before. I cried as I spent my 11th birthday mourning her loss many states away from my home. I shared a poem I'd written about her at her funeral, but felt so far removed from her. My pleadings to Heavenly Father, who at the time also felt too distant, took some time before the despair was lifted and sorrow was replaced with comfort.

I remember when I couldn't stand for more than 2 minutes without vomiting or almost passing out, crawling down my hallway, begging God to heal me or kill me once my intestines completely shut down and bleeding over my kidneys started. I remember begging for relief when I was on day 4 of being in labor and my continued calls to the OBGYN were followed with, "Just drink more water. Your kidney stone should pass." Or when my husband lost consciousness and I was holding him up while I called 9-1-1. Hello? Is someone there?

I remember praying every day for 12 years to be healed of Multiple Sclerosis. Then I gave up, because I decided it was too depressing to hope for something that was obviously not God's will. So, I accepted it and moved on. My prayers changed and I continue to learn new aspects of such a simple concept.

Each time I have poured my entire soul out to God there were pauses in response. The answer or solution was not instantaneous with my first, fifth, or even fiftieth prayer. I understood that my will and God's will wouldn't always jive.

On the left is what I typically pray for that really depends on God's will and timing. Sometimes it is what we both want and other times there is a pause or delay in the blessings coming to fruition. They aren't mutually exclusive or exhaustive lists. The right side is a list of things I know God wants but I often struggle with wanting too. In the middle are things I know God always wants, which I can pray for as a "But if Not" option that I also often desire (a more eternal perspective). I.E. In my single days I prayed for a loving man to marry for eternity. I started praying, "but if not," help me learn to LOVE myself-who I am and where I am. Or now I've prayed many times, "Please heal me from anesthesia dolorosa, BUT IF NOT, please give me strength to persevere or to understand hope better."


A sister missionary recently shared this with me when we had them over for dinner. Main concept from Celeste Davis.

I also often ask now, "Is this an earthly thing or an eternity thing? If it's just a moment in mortality, what can I gain eternally because of it?" This isn't because God doesn't care about earthly issues that will be resolved in the Day of Judgement or Resurrection. He cares a great deal. But sometimes His timing and mine take some work and time to align. 

Jesus gave examples of HOW to pray that I had previously overlooked. In the Garden of Gethsemane,  Jesus asked his friends for support and then felt "exceeding sorrowful, even unto death." He fell on his face and prayed, "O my Father, if it be possible, let this cup pass from me: NEVERTHELESS not as I will, but as thou wilt." (Matt 26:36-39, emphasis added) He prayed THREE times asking for His will, but accepting that God's will was best. In the Lord's prayer where he taught his disciples how to pray, He first acknowledged God's greatness in wonderful reverence and then said, "Thy will be done, as in heaven, so in earth." It was after this acknowledgment that God's will and an eternal perspective was the primary request that He then asked for His daily bread and more. Others throughout the scriptures teach us that words such as, "But if not..." or "Give me strength to bear..." were a depth to prayer my little 5 year old ring-searching soul didn't quite grasp at the time. There is also a sense of work to be done on the person pleading for intervention. God is mighty and all powerful. If he wants to move our mountains with legions of angels, He certainly can. But, it may not be what's best for us. Nephi's brothers tied him up and desired his death on more than one occasion. Instead of asking for a complete release from torment, he prayed for strength to break the ropes himself with God's assistance. I have asked many times for relief, a cure, a reprieve, and a solution. I believe whole heartedly in miracles. But my role in the miracles or simply being able to see the path in a different light is something I'm learning more and more each day.

Have you ever prayed your entire soul with gut wrenching sobs as your earth was shattered off its axis? You prayed in a wailing weep and with a desire more desperate than you wanted air itself? How could God's will NOT be to grant your deepest desire? You wonder if the deafening silence and heavy burden will actually kill you?

I have decided that to me, these are times of silence and pause for both of us. It does NOT mean God's absent, apathetic, or leaving me alone. Instead, He is there even more reaching out to me, providing a quiet strength and comfort only He and Christ can offer. Their pause in relief cause me to pause and consider more aspects of the picture that seems to blind me into oblivion. The more I pause in prayer, the more my soul is filled with the Holy Spirit of lessons only this mortal realm has to offer. There is purpose to our suffering. The pause is a powerful moment, which seems to stretch into eternity, for growth and a closeness to heaven. In a sense it does stretch into eternity. If we turn TO God, it will make us better and we will be blessed into eternity. If we turn FROM God, we will inevitably become bitter and we could be cursed into eternity. (Forgiveness and the atonement are always available, thank GOODness.)

I have thought so much about silence the past few months. Silence from the heavens as I sat too often in silence myself, feeling like the world passed me by. To not be able to smile, talk, or laugh at times has been one of my greatest curses. There were times when the only solace I found was in planning my funeral so my husband wouldn't have to worry. The only reprieve I saw on my horizon was death. Butterflies have grown in significance to me. We could release butterflies. Of my two favorite songs, "Nearer My God to Thee," and "A Child's Prayer," which one should be opening and closing song? How do I get the plans to my hubby so he doesn't have to worry? How do I go about buying my plot? Where will I be stuck in the earth for quite some time? Maybe Kansas isn't the best place for me forever. Humph. In my darkest hours it was the only happiness I could find to shove aside the numbness burying me alive. The constant level of pain was beyond belief and hard to describe the depths of despair. Thankfully it didn't last. There were friends and family who lifted me when I literally couldn't lift my body or voice. But even more than that, God and Christ have lifted me and taught me more than I sensed at the time. I know my "suffering unto death" pales in comparison to all Christ endured.

But because Christ descended below all things and rose above it all, He is the one and only I know who truly understands all I endure. There isn't a soul on earth I know who has/is going through everything I am going through. I can't find research anywhere leading me to someone who can tell me that if I do A, B, and C, relief will follow. I can't even find a timeline of "Hold on this long and you'll feel more like a normal human being." God does know all and has provided a great deal of comfort along the way. The more I have left my will on the sidelines, the more strength I have found from above to carry on. I feel more alive each passing week and feel as though this time in my life is my cocoon phase. Darkness, transformation, stillness, and a pause where I wondered if the suffering was necessary is slowly dissipating. I believe that in small doses, day by day, relief and growth are happening.

Yesterday, on Saturday, as I continued to talk with my little four-year-old daughter about the meaning and importance of Easter, I contemplated a lot about the last week of Christ's life.  I remember walking through the Kidron Valley, thinking of the Psalm, "As I walk through the valley of the shadow of death," as the shadows of graves loomed along the path. We sang songs that echoed through the upper room where the Last Supper may have been held. I sat quietly on the steps Christ would have taken to be unfairly judged. One of my most peaceful memories was sitting near the garden tomb and feeling the reality of Christ's sacrifice, death, and resurrection. The newness, rebirth, joy, rejoicing, and hope available to all of us is beautiful. But, the fullness of these beautiful aspects of eternity awaiting us won't come without the sorrow, despair, and pauses. These times of quiet reflection and painful transformations are incredibly vital to our journey here on earth and throughout eternity. The fact that healing, whether it be physical, emotional, or spiritual, take time is not a bad thing. God has the power to do it instantly. But the opportunity to learn our own capacity for strength, love, empathy, and more grows with time just as our hearts and souls heal piece by piece.

Here is Max Lucado's "The Silence of Saturday," which summed up my thoughts regarding the silence above (or pauses I like to call them), in a more eloquent fashion.

Jesus is silent on Saturday.  The women have anointed his body and placed it in Joseph’s tomb.  The cadaver of Christ is as mute as the stone which guards it.  He spoke much on Friday. He will liberate the slaves of death on Sunday.  But on Saturday, Jesus is silent.

So is God.  He made himself heard on Friday.  He tore the curtains of the temple, opened the graves of the dead, rocked the earth, blocked the sun of the sky, and sacrificed the Son of Heaven.  Earth heard much of God on Friday.

Nothing on Saturday.  Jesus is silent.  God is silent.  Saturday is silent.

Easter weekend discussions tend to skip Saturday.  Friday and Sunday get the press.  The crucifixion and resurrection command our thoughts.  But don’t ignore Saturday.  You have them, too.

Silent Saturdays.  The day between the struggle and the solution; the question and the answer; the offered prayer and the answer thereof.

Saturday’s silence torments us.  Is God angry?  Did I disappoint him? God knows Jesus is in the tomb, why doesn’t He do something?  Or, in your case God knows your career is in the tank, your finances are in the pit, your marriage is in a mess. Why doesn’t He act?  What are you supposed to do until He does?

You do what Jesus did.  Lie still.  Stay silent.  Trust God.  Jesus died with this conviction: “You will not abandon me to the grave, nor will you let your Holy One see decay” (Acts 2:27 NIV).

Jesus knew God would not leave him alone in the grave.  You need to know, God will not leave you alone with your struggles.  His silence is not his absence, inactivity is never apathy.  Saturdays have their purpose. They let us feel the full force of God’s strength. Had God raised Jesus fifteen minutes after the death of His son, would we have appreciated the act? Were He to solve your problems the second they appear, would you appreciate His strength?

For His reasons, God inserts a Saturday between our Fridays and Sundays.  If today is one for you, be patient.  As one who endured the silent Saturday wrote:  “Be patient, brethren, until the coming of the Lord” (James 5:7 NKJV).

© Max Lucado, 2013

https://maxlucado.com/the-silence-of-saturday/

PTSD? ME?

Control

Control is NOT my thing. My husband and I both were looking for someone who wasn't controlling, because we'd seen too many unhappy marriages with one partner being obsessively controlling and manipulative. I could care less about which way the toilet paper is put on, how the toothpaste is squeezed, how you do the dishes, how you dress, what soda you drink, or how you drive. I'm just grateful you're doing it and in my life. And if a thought pops in of, "Ummm, that's not the easiest/best way..." I thank my hubby more for doing it. Just a lot of gratitude. I've been that way since my first year of college. Find the good and let go of the rest.

I also had to learn how to not let my heart or my head take too much control, but to get in sync. This took longer. It took some time, for example, when my heart would pine after a guy and my head would say, "Nope. No bueno." Or I'd just freak out and take on the personality of a plate stammering in awkwardness and leave only dead air. Other times I threw caution to the wind and let my heart go (like when I finally decided to stop waiting to love a guy before I kissed him and kissed a French Jamaican at the Eiffel Tower in Paris. Yeah, I have pictures of my FIRST kiss. Ever. Did I mention it took me a long time to let go?). I had a pretty decent balance between my heart and head. But between my body and my spirit, we've been fighting for quite some time. I suppose since my first year of college. My body let go of my vision and hearing as new lesions formed. I had nausea, dizziness, fatigue and pain every day. My body would defy me, do its own thing, and I was left trying to catch up with its new disabilities. This was different than not wanting to control another person or differentiating between my wants and needs. This was so basic and just about living and surviving. My body---oh, that fighting body---my cells were fighting themselves. C'mon guys, get it TOGETHER!

PTSD is a WHOLE other game I didn't have any experience with until now.

When some friends mentioned it, I thought, no, that's not me. Before the thought had come to me that it was PTSD, but I thought it probably was just a mini version of PTSD. I didn't experience war, physical, or sexual abuse where it is obvious that your FIGHT or FLIGHT reaction would kick into gear. The psychological effects of these horrendous situations I could sympathetically understand as I talked to, worked with, and loved many who had experienced these situations. I never thought much about PTSD itself, but thought more about their emotions during and after the miserable attacks on their bodies and psyche.

Until I experienced it and thought, "Um, no, I haven't been through anything even remotely similar. Mine is just silly."

Back Up-->
I went to a chiropractor and she wanted X-rays because I have so many health issues, especially after the surgery. My insurance for sure wouldn't cover the expenses in her office, so she sent me to the hospital. I wasn't worried about this. Since the surgery I had returned to the building attached to the hospital, had blood work drawn, and had several check up appointments. I even was in the hospital for 4 days and had no PTSD from it. Not even when that cocky doc messed up my spinal tap. I just laughed it all off. Sure I was depressed, shaky, and had some issues, but I didn't connect that at all to my waking up in the middle of surgery.

So, going to a different hospital for X-rays and one vial of blood was NO biggie.

I waited in the late afternoon for my turn with the phlebotomist. As afternoon hits, so do my pains. Once I met with her, she took LITERALLY 10 minutes to feel back and forth all over my arms and hands on both sides. Never dug a needle, but obviously couldn't feel anything. In my 19 years of medical tests and pokes, I can tell when someone doesn't know what they are doing. But I don't usually speak up loudly. She was young and I had already asked if we should have someone else try. "No, I'm just feeling for it before I poke." By the third attempt to go back to my right arm, I INSISTED that we call up someone else. I started getting nervous and shaky. ? She came back after some time of other nurses coming and going. She said I'd have to wait 20 minutes. I didn't want to wait. I wanted to run. What was WRONG with me???

So, I went down to X-ray. The guy was kind and quick. But then there was an ODD X-ray he wanted. I had to open my mouth as wide as possible. I explained how difficult this would be with my anesthesia dolorosa, but it had to be done. So, I did and the pains increased. I got a bit more shaky. I just figured I needed to finish and get home to take the rest of my anti-seizure meds before my pains got to that unbearable level. But then I had to lie down on a cold metal table for the last few X-rays. The minute my left leg touched the cold metal table as I lay flat, my body wanted to JUMP out of itself. All of a sudden the emotions and memories of waking up on the surgical table 2 months earlier came rushing back to me.

I was nauseous. I was dizzy. I wanted to cry and scream at the same time. My heart was beating too fast. (My doctors have been worried because for the first time my heart rate continues to be too high because I'm constantly in pain). I've gotten very good at keeping my emotions in check and dealing with them secretly and silently on my own. But this was trying my control. I started shaking and asked the tech how many more. He would adjust my arm, move the table to the right place (easier than moving the gigantic machine with a light above me). Each time he moved it I thought I would fall to the floor. He reassured me there were only two more left. I breathed deep and continued to tell myself to get a grip. It was ONLY X-rays. It's NOTHING. I don't have a needle shoved in through an opening into my skull. There was no heat. The light was for the X-ray not to see better through my face to direct the needle. They weren't looking specifically at my face with anesthesia on call. Two more. Once I was done I hurried to my husband breathing deeply, whispering that I almost fell apart in there because it reminded me of my surgery. He rubbed my back, we got the CD and I wanted to leave IMMEDIATELY. We still had to meet with another phlebotomist and I didn't want anyone digging in. But, I reminded myself that I HAD to get it done. I've been poked way more times than I can count. This is just one of 1,000. I told my husband I couldn't talk about my feelings or emotions or I'd cry. I had to do this first. I met with the phlebotomist, it took her less than a minute and we were out.

I cried in the car and said, "This surgery messed me up in every way. Will I ever be normal again?"

I didn't think I'd have an issue. Dealing with waking up in the surgery was the lowest on my list of things to conquer and deal with! My nightmares had stopped, I was dealing with the pain, I had quickly forgiven whoever was responsible for the situation, and was focusing on healing.

But, apparently feelings buried alive don't stay buried. It is an odd sensation to feel so intensely something that you had tried to bury. You feel like you're being buried alive. You feel like you're drowning with no life saver in sight. My body wanted to separate from the situation, but couldn't. I was being FORCED to deal with this. Again.

Talking about the surgery started to help me get a better handle on it.

DAY OF SURGERY:

I went into the hospital happy and extremely hopeful. I didn't care if I was one of those whom it only helped for a week. One week with no Trigeminal Neuralgia was a dream I could only imagine. I joked and laughed with the nurse getting me ready. She couldn't get my IV and had to call someone else over. But, no biggie. She opened up about her daughter and commented on my joy and ease. She had to go work on someone else and I was assigned my nurse who would be there when I got out of surgery. I saw the young anesthesiologist again (I'd seen him 2 weeks before). I joked that he has the best job because he is who everyone wants to see. He makes the pain disappear. He acted weird and didn't respond with a "Yeah," but I figured he is used to not interacting much with people. No biggie. I was wheeled into the surgical room and I smiled and talked to everyone. I got onto the cold metal table myself and told them I liked the cold because of my MS. They explained what they were going to do and I was great with it. I fell asleep and don't remember anything...UNTIL...

I woke up with the most intense pain I had EVER felt before. I could feel the needle in my skull, the burning in my face, and SCREAMED. Not one scream, but over and over begging them to stop. I had jerked my head. Someone said, "Stop," (I believe it was my neurosurgeon). Then he said, "____ more," I thought he said, "We aren't going to do any more," but wasn't sure. He might have said, "We need to give her more." They pulled out the extremely long needle. I started to close my eyes but didn't want to. My screams stopped, because I knew the needle was out at that point. But for some reason I still wanted to let them know that it had hurt. I still wanted to beg them to make it all stop. To make the pain stop. I could still feel pain. I know it's not logical, but I still felt like they were trying to kill me.

They moved some things, turned off something, and more people started moving around me. A nurse said, "I can help move her to the bed" (She might have used another word than bed). I thought, "Oh, I should help too." With my eyes closed, I said, "I can help too. Do you want me to help move to the bed? I can do it myself." I didn't want to inconvenience them and wanted to do my part. I started to open my eyes to see what their response was because no one said anything. It was like everyone went silent and still for a second. A few seconds later, I couldn't open my eyes easily and my body jerked like it never has before. It felt like my body was trying to fold in half. I was unable to say what I wanted but could only moan in sync with my body jerking. I was conscious but couldn't open my mouth to say anything. For some reason I couldn't understand what was happening. I just knew that they were making it worse. I needed to beg them to stop because now I had even less control of my body. It was like a nightmare where I couldn't move or talk but desperately needed to. The unbearable stabbing pains, the uncontrollable & severe body spasms, the nausea, dizziness, the memory of the huge hollow needle up inside my skull, the burning, and feeling like now my jaw was wired shut with only the ability to moan in sync with my body's grand seizing were too much. The nurse reassured me that I didn't need to do anything. They would take care of everything. But to me they then pretended like I wasn't there. They moved my body without me saying anything. They had control and I had none. My pleadings fell on deaf ears as they talked to each other over my body.

I fought over and over to get enough control to open my eyes or my mouth. I just had to TRY HARDER. It was like super glue, knives, a sledgehammer, bugs, stinging scorpions, and an ice pick being shoved down my ear were mocking me all over my face and consciousness. It was the most painful nightmare I'd ever experienced. But everyone around me moved and talked like I wasn't even there. I didn't even matter.

The bars were raised on the bed, someone wheeled me through the doors of the room, down the hall, and as they were parking the bed, I FINALLY had enough control to open my eyes. I looked up and saw the clock was 10:00 a.m.. The surgery had taken 2 hours. The nurse walked over to me and seemed surprised that I was so awake. The others circled around my bed. There were several nurses (more than the two assigned to me-one of them the first nurse who had talked to me), my neurosurgeon, the doctor on the floor (for patients recovering from surgery), and I think the anesthesiologist. I blocked out the 6th face and I think his is the one I blocked out. I kept repeating that, "It hurt! It HURT!" The neurosurgeon jumped forward and said, "What hurts?" I clarified, "No, the SURGERY-it hurt too much. It hurt so bad." I remember this look of horror on many of their faces. I thought they looked at each other, but the nurses may have looked at the surgeon and anesthesiologist. Maybe they all looked at the anesthesiologist. Either way they all looked very worried. I was very awake. I saw others being wheeled back from their surgeries completely out of it. I was jealous. The neurosurgeon touched my forehead and I could feel it fine. His shoulders slumped. He felt the other parts of my face and I couldn't feel them. He left and I was left with just one nurse. Less than a minute later one of my worst trigeminal neuralgia attacks came and it was uncontrollable. I begged to be able to just leave the hospital. She told me I'd just gotten out of surgery. I couldn't. She asked the doctor there for pain medication and administered it quickly. She told me, "We are going to give this to you. Most people it knocks them out (puts them to sleep), but it looks like nothing works on you that way. In 3-4 minutes my pain was under control and I again begged to leave the hospital. She was apprehensive but asked the doctor. He looked at me like I was crazy, but said, "No, we have to keep you here for monitoring. At least 15 minutes after those meds." So I watched the clock all alone. All I wanted to do was leave. I considered ripping out my IV and just walking out in my gown. But, I didn't know where my husband was and they wouldn't let him back there with me. The nurse asked a few times how I was and I said I was FINE. I didn't feel fine, but I knew if I said it and acted fine that I had a better chance of leaving soon. The nurse who was assigned to be the liaison between me, my husband, and the neurosurgeon, came to see how I was doing. I told her that I was fine, wanted to leave and wanted my husband back with me. I asked my main nurse if I could leave. It was 10:20 and I got the clearance to leave.

I later learned that the neurosurgeon and nurse met with my husband. They explained that V1 hadn't worked and that I woke up in surgery. The nurse said, "She may remember too much of the surgery." The kind, compassionate neurosurgeon talked about how disappointed he was that it hadn't worked like he had anticipated. (V1 is the hardest to get, but he is very capable.) For some reason he didn't get to V1. He took it upon himself to come out and talk to my husband personally. My calming husband was allowed to come back with me, they got a wheelchair, I was taken down to a lower level, and checked out. It probably took 10 minutes total, but again felt like eternity. I cried and cried because it was obvious that my worst trigeminal branch hadn't worked, the numbness was something I didn't know if I could live with for 1-3 years, and I was still getting my trigeminal and occipital neuralgia attacks but now in greater frequency, intensity, and now in additional spots on my face, neck, and ear. I tried not to think about waking up in the surgery and didn't even talk about it.

The next day I had a cough and the constant pains increased. I wrote a message to the nurse and said, "My lips won't stop burning." I was told I couldn't even take Advil until 6 weeks post-opp. I could only take aspirin. I sent another one a few days later saying the burning was worse. I was told I could take EXTRA STRENGTH aspirin. But, I had no painkillers and my cough grew worse. I couldn't get into my family doctor, went to the Urgent Care, only got one round of steroids, was told it wasn't in my lungs and I could call after 1-2 weeks and I could then get another round of steroids (despite my explanation of MS, weak immune system, and need to ALWAYS need 2-3 rounds whenever I catch something). Then the cough got worse, my fever was bad, I passed out once and felt like I would pass out several times, my husband covered me with ice packs so I could sleep or move and I held on until I met with my neurosurgeon. The whole time that passed was 2 weeks and 3 days, but it felt like eternity. I was better with my fever and ability to walk by the time I met with him, but apparently looked really bad. I had a 102.6 fever, pneumonia, sinus infection, UTI, and possibly meningitis.

Yada, yada, yada. You know the rest of the story if you've read my other posts on Facebook.

Anyway, fast forward 2 months and I was getting to a happier place. The focus from day 1 of my surgery and on was to learn how to survive with anesthesia dolorosa. I had buried my thoughts and memories of waking up in surgery. I figured I'd dealt with it. My nightmares had stopped, I was dealing with the pain, and I'd forgiven anyone responsible for me waking up on the surgical table. It wasn't like my skull was wide open for the surgery when I woke up. They just went IN through an opening in my skull. It could have been worse. (Which I know I say way too often).

So, when I freaked out silently as I was getting my X-rays, it threw me for a loop. It felt like it came out of left field. How did it not pop up before? It probably wasn't a big deal since I didn't actually fall off the table, run out like I wanted to, or break down in tears until I was with my husband. I concocted plans to deal with this new, surfacing fear with ideas of coming back to the hospital. I could visit patients---but which patients with my weak immune system and their struggles? How could I really help someone else while exposing myself more to the hospital. I had a thyroid ultrasound and probably another MRI coming up. I needed to face this head on. (pun intended)

I have an amazing counselor I've been working with since about December. She went through the list of qualifiers for PTSD in the DSM-5 and things made a bit more sense. I had been easier to scare, more jumpy, shaky since the X-rays, nightmares, fears, depression, and so much more I just brushed off as new things to conquer solely due to anesthesia dolorosa. I was just trying to deal. And now my body was letting me know that I have to actually HEAL. I had to face everything before, during, and after the surgery. My counselor reminded me that this is a special circumstance where I can't attack my issues as I usually do-full force. Tell me what to do and I'll do it 100% NOW.

So, I'm taking it slow. I've identified triggers and am opening up about the specifics of the surgery. I am so grateful that I had help from friends and family in December, January, and February. I had no idea just how vital their compassion and help would be in my survival. I'd never had more help in my entire life. And I had no idea that I would go through some of the worst horrors I never could have even imagined the past 3 years of our financial, physical, and emotional challenges.

But, I AM learning to HEAL instead of just DEAL.

I LOVE Roller Coasters

I used to LOVE roller coasters so much. This "ride" has been too similar to a roller coaster, but I've learned to alternate between throwing my hands up in the air and hanging on for dear life. HAHa. Actually, I'm beginning to get the hang of it. Mostly. Sort of.

Today was a good day. =) It is 5 pm and I have only had about 8 attacks so far. That is so much progress for me!

I'm up to about 1 good 1/2 day a week. Every time I think I've figured it out (the right formula of medication schedules, alternative medicines and practises, the right food, etc), I'm thrown a curve ball and have 3 bad days.

The only thing I know is that these two things ALWAYS make it worse by several days:
1) Less than 10 hours of sleep
2) Talking too much (or anything requiring moving my face too much)
      a) I used to notice right away that the burning, stabbing, punching, pulling, stinging would increase as I spoke, but I always hurt. It just was the intensity that increased. I didn't notice a difference day to day. But, as my meds have been increased to full dose I can tell that simply talking too much one day makes the next 2-3 days horrible. I pay for it more than just in the moment.

Just like after every MS exacerbation, I had to relearn what my body can and can't handle. It takes some time but eventually I find patterns and adjust. Sometimes doing too much physically was worth it even if it meant my fatigue, nausea, dizziness, pain, and strength for the next 3 days or week would be out of control. I could also plan for something and rest much more in anticipation of an event. It didn't always work, but it did seem to help more often than not. With ANESTHESIA DOLOROSA, however, the pain is more than I can bear most times so my body is ruling my decisions these days more than ever before. And the patterns have been much more difficult to nail down.

It took me a long time before I could find any good that came from this anesthesia dolorosa and bad surgery. BUT, I finally figured out one!!! The pains are a great reminder to take my health seriously. I HAVE to say, "No," when normally I would push myself until I crashed. I can't skip even one dose of any of my meds. I get frantic now when I get low on most of my medications. I have 'back ups' in my purse just in case. But, I'm more cognizant of what I eat, how much I sleep, and where I put my energy. I literally don't take one thing for granted that my body does now. Breathing, talking, heart beating (my heart rate continues to be too high because I'm constantly in pain), intestines, feeling, seeing, hearing, talking, voice box, ---everything! So, I guess that's TWO good things from all of this. In time I'm pretty sure I can think of a third.

I say with great CAUTIOUS optimism that I am learning to live with anesthesia dolorosa and trigeminal neuralgia. Ever since I returned from my brother's wedding I have regressed considerably. This was especially frustrating and depressing because I worried that already my body was adjusting to the anti seizure meds just like all the times before. I cried that I didn't know if I was strong enough or if I could handle the greater increase in pain again so soon.

THEN I REALIZED...improvement I hadn't noticed before!! When I cried, as long as it was during the day and my many meds were on schedule, it DIDN'T FEEL LIKE ACID RUNNING DOWN my face. WHAT???? At the moment the pains were so bad that I felt like there were no improvements and only digression. But, I was THRILLED.

Here are the other improvements that have happened:

Week 11:

• (Only during the day and if meds are on schedule)--crying feels like crying. No more acid. I can wipe away the tears if I catch them before they hit my cheek. 
• Lips burn less (still always burn, but the level has decreased during the day)
• The tips of two teeth I can feel now on my right side (one top, one bottom)
• The sensation of bugs crawling under my skin is now happening on my worst spot (by my mouth/chin-close to the incision spot). When I touch it or accidentally brush it, it feels like there is a hair there that won't go away. But, I'm thinking that means healing is happening. Granted, I have spots on my body that it feels like that no matter what and have never gone away without anti-seizure meds, but it's just what I'm gonna believe. =) 
• My depression is lifting some. 
• It is less obvious that I twitch and wince now. I cry out or moan a lot less-usually just at night when it's unbearable. If you see me out, you can't really tell the pain in my face. I have learned to also hold back so that you can't tell the increase in pain as I talk. Just like when I was in my first year of college and learned how to look normal when my vision and hearing would go away! Or when I was about to throw up, couldn't walk well, got too dizzy, or anything, I learned to adapt and look like I was okay. 

I can't believe my luck! Night time is still very difficult for me. But, I felt so much like a normal person today for about 2 hours! 

I just recently started seeing a chiropractor and have been seeing a massage therapist. I think these things have helped me greatly. I used to feel SO incredibly GUILTY for going! I'm so used to not spending money on me-not for Walmart moisturizer, not for clothes, not even doctor's recommendations. But now we have enough to meet my needs and I cannot even believe it. Sure, it doesn't solve all my issues. But I have a reduction to some extent to some of my pain. This is the biggest blessing I've had in 3 years. I still feel somewhat guilty, but I feel more alive and human. So, even if it is just for half a day, once a week, it is SUCH a tremendous blessing in my life!!! 

Thank you to those of you who MADE it possible!!!