Saturday, May 12, 2018

We are moving...again...and it isn't anything we expected...

Short version: We had no idea, but Mike's boss wanted him to come with him to a job in Colorado. It turns out the reason we felt like we shouldn't buy a house was because we would be moving. It will be great for Mike's career and wonderful for my health. (Not that I'll be cured, but the climate is much better and resources are better as well.) We will be there in 1 month. We have been inspired along the way, but only little glimpses one at a time. It took faith to move forward each step along the way, but we are glad we did so. It all finally makes sense and will be a great blessing.

The 1885/1889 phone and the seating under the stairs

$185,000 and the house we missed by ONE day...

It's a LONG story with a WHOLE lot of inspiration and people NOT doing their job. If 4 people had done their job correctly or timely, we would have had this house. If I had stood up stronger, we would have had this house (or another house we put an offer on before our house was on the market). Either way, we felt a great deal of inspiration and a push to sell our home. I learned a lot about how my inspiration may go against everyone else's expertise, experience, and their own feelings. But, if I feel it, I need to stand up for it. I did with the house we sold, and thank goodness we did. I knew who would buy our house without even meeting them. There were 3 times to doubt that because the viewing fell through, the financing fell through, and the timing was quite crazy. But, it ended up being exactly as I felt with THREE different homes (my dream Victorian, a French Provincial home, and our home that we sold).

However, even when you know or feel that something will happen or it's right, it doesn't exactly make it easy every step of the way. In fact maybe I should start expecting opportunities to doubt to follow inspiration instead of being surprised by it.

In the end, I know what has happened is the RIGHT thing. And that EACH time I received inspiration, it was just a little at a time. But it took a great deal of faith to move forward on each LITTLE piece of inspiration. It honestly didn't make sense most of the time. It didn't make sense to the first two realtors (French Provincial home for $95,000), the second realtor (who showed us the Victorian home and sold ours), the investor who bought our home (or anyone at the table on the day of closing), the management company who rented us our current duplex, or a lot of other people. Every single time it turned out exactly as I felt it would. From prices, to time lines, people involved, and offers. But, I've learned that you have to go with your inspiration even when it doesn't even make sense to you/me. 5-6 months later it finally makes sense and all the pieces have come together.

This wasn't our plan or our expected timeline.

1) Jan/Feb 2017: My neurosurgeon recommended we visit Colorado for the CBD. We found out you have to be a resident of CO with a red card for the higher concentrations. Instead you could order hemp sources of CBD with lower concentrations online (for the time being at least. Last time I looked Kansas and Utah are fighting even a hemp source, which I don't understand in the least. Pure CBD is NOT marijuana.).
2) Hubby asked my neurosurgeon on another visit how helpful it would be to move me out of KS climate. He said it would DEFINITELY help, so we figured after Mike was done with his schooling (2019) we would look into moving to Utah or Idaho near family.
3) Hubs told his boss what the neurosurgeon said and that eventually we may move west.
4) 6 months ago a company was building a second plant and starting to look at staffing the place. The chief engineer had worked at hub's current company. They started talking to his boss about coming to work for them instead. Boss wasn't too interested, but they really wanted him.
5) Boss joked with Mike that maybe he should come with him. Mike laughed and said, "Well, the neurosurgeon said to go." They joked but never really talked about us coming out there again.
6) 4ish months ago the company gets serious about wanting Mike's boss. He really starts considering it.
7) We sell our house. For some reason we can't find a house we feel good about.
8) We sign a contract on a new rental.
9) 2 weeks later, the week we are moving the rest of our stuff, we find out that Mike's boss has talked to the new company about HIM. The whole company has talked about him. His boss negotiated that he wanted MIKE to come to their company as well.
10) They hold off posing the job, tell Mike when they post it, less than 12 hours later they ask why Mike hasn't filled it out online yet.
11) He fills it out and doesn't hear anything from them for several weeks.
12) I agonize over whether we should or shouldn't move. What about next year? WILL he get the job? Are they no longer interested? How much will they pay? What are the benefits? Is that why we weren't supposed to buy a home? We JUST signed a year contract on this place!! (Did I mention that to get out of this place costs $500 and the apartments we were looking at were gonna cost thousands?)
13) I feel good about what was going to happen. Mike isn't sure. He finally gets the call. They ask, "What will it take to get you here (to work for us)?"
14) 2 weeks later (week before finals), we take a quick 2 day trip (22 hours in the car).
15) We look at 2 apartments, 1 home to buy, and as I'm applying at night for the 2nd apartment I feel, "STOP, there's something better." I find a better place with a cool realtor/owner and we have decided to rent for 3-4 years. Hubs meets with the company and they are amazing! Both of us feel a great sense of peace and know this is exactly where we are supposed to be at this time.
16) His jobs leading him here have all had purpose in different ways. ALL leading here.
17) We are moving to Colorado in one month.

**Funny facts: I always wanted to live in California, Colorado, or Washington state (<--again). But I figured it wasn't a real possibility and didn't think much about it the past decade or so. On our 2nd wedding anniversary my cousin recommended Estes Park and my dear aunt and uncle let us use their time share condo to celebrate. On our way to pick up our daughter from my parents, we passed Loveland/Greeley/Evans. We LOVED the area and I said I wanted to live there! Mike said, "Find me a job here and I'll move you wherever you want. This is a great place!" I looked for a day and realized there just weren't jobs there. Fast forward 4 more years and here we are because of a job! Also, when I was telling my mom that we were looking at homes to buy in the area, we included Fort Collins. Right when I mentioned it, she got a call from FORT COLLINS! The impeccable timing and chance at seeing it right then was so rare and amazing. The way we were led to the townhouse/condo we will rent is also quite interesting.**

Yesterday we met with my fabulous neurosurgeon and it was a good meeting. He is so down to earth, honest, and open. He had a couple ideas on how to deal with my ulnar nerve issues, as well as the possible medication tolerance issues again with my TN/AD/ON/GN. Because of me, he has changed a little on how he does Radio frequency lesioning specifically on MS patients. Any neurosurgeon will tell you MS caused TN is the hardest to treat. But, nonetheless, they will use the same treatments in the same way. He has altered it and has a running theory he will test and is talking out with other surgeons and mentors. I've been told in blessings (both when I had started to die-Serotonin Syndrome-and with this failed minor brain surgery) that what I'm going through is for more than just me. Who knows if he continues to be a specialist in the area of Trigeminal Neuralgia and MS patients in particular? Maybe it's just specifically for me and the few around me. But, maybe it's more.

The best part was that my neurosurgeon is especially excited about our move to Colorado. He believes it will be better for my health in several ways. We will still come back to meet with him at least yearly. In a few years if I'm still struggling we will implant electrodes under the skin in my face/head. But that is down the road and I'm not going to think about it much unless I get a bit hopeless. =)

I'm extremely hopeful for Colorado. We had NO idea his boss was talking to the company about Mike. Mike is the most humble guy I've ever known. I tell him he is amazing at least every other day. He always says, "Meh/Nah, I'm just average." Someone can tell him something he already knows (and has been doing for a year) and he will tell them, "Thanks for telling me," over and over to make the other person feel good about themselves. He won't tell someone something great that has happened because he doesn't want the other person to feel bad that it hasn't happened to them. Both his current company and his new company have talked about his leadership and they both want him!

It sure has been a crazy ride with some major ups and downs. But we feel immensely blessed and hope the next 3 years are just easy peasy. And boring. He goes to work. Lil girl goes to school. I get stronger or even just stay the same. And life is just ...boring. That's a possibility, right? Here's to CO and playin' it COO'

Tuesday, April 24, 2018

The invisible hammer and knife are getting bigger

I haven't updated in quite some time for a few reasons.

1) Moving
2) New invisible pains
3) Added stress

We had no intention of moving until 2019 after Mike finished his bachelor's degree. Even with the neighborhood's safety declining, we figured we would be okay. A police officer reassured us, "I'll add you to the list. We are keeping a VERY, very close eye on your neighborhood." But we received such strong inspiration that we decided to follow through. Years before when we tried selling, our house was on the market for 6 months with only 1 showing. This time we put it on the market at Christmas time with low expectations. However, 6 WEEKS later we had 4 showings and 1 incredible offer. I'm glad we followed inspiration through that process as well, because we told the realtor to wait. We waited the perfect amount of time and instead of paying to get out of our house, we made the exact amount of money we needed to pay the deposit on our rental. (That's another story for another day.)

We thought we would buy. But, instead, we found a lovely duplex to rent, acted quickly, and are now in a wonderful neighborhood. We have TWO bathrooms (full size sinks), full size washer and dryer, insulation, a garage, updated electrical, and so many other blessings.

I tried to avoid a MS relapse or exacerbation (a usual occurrence for me with moves or big changes). We were so lucky to have help from many amazing people. However, a week or two before we moved I started having new stabbing pains. I felt like I stepped on a nail, my elbow was snapped out of place, like a hammer had broken the bones on the top of my hand (or a knife was stabbing me), and my pinkie and ring finger were broken for days. I also woke up sometimes feeling like my head had "fallen asleep" (like when your foot falls asleep and it cramps, hurts, tingles, and is numb). Odd feelings that were all NEW. This is my "good side," and worried me immensely that MS was again eating away at nerves. I hurt from the top of my head, down to my heel, and everywhere in between along the left side of my body. Granted, none of it is near the level of TN/ON/GN/AD, but it scares me that it could become like all of those.

I emailed my neurologist but she just thought it was a MS spike due to stress. Her solution was to just deal with it. <Thanks> I'm usually the one who says, "No biggie. Everything is fine." But really, if I mention something being wrong, you can count on it being a BIG issue. When you have MS there is so much unpredictability and fear. What if this is permanent? This is new, so what does that mean? Typically a "normal" neuro would say, "Come in," or "Let's do a MRI, high dose steroids, or talk about a plan." My neurologist told me before that if I ever get a new lesion that I will have to go on a disease modifying drug. But, since I'm one of those uber rare patients who actually gets worse with the meds, she would hold off. Just treat the symptoms...until...

Truth be told, my neurologist has been less than fabulous. There have been way too many times where she has messed up my medication refills or changes. The worst was this last time where the pharmacy tried contacting her three different times. I had to "borrow" anti-seizure medications from the pharmacy and ran out again. It took tears and pleas in the pharmacy to my neurosurgeon to get me more (and he talked to her...which finally fixed things). It's especially worrisome because if you stop anticonvulsant meds cold turkey you can GET seizures and one in particular never ends. Thankfully I meet with my neurosurgeon soon and again hope he can pick up the slack. It's sad when your BEST doctor is the one who can do the LEAST for you.

I decided not to push answers about my new pains with my neurologist and am pretending it's a blessing in disguise. I don't want a new disease modifying drug (coupled with new permanent disabilities). I'm pretending like the feeling of half of my head falling asleep (oh, the irony) is just a sign of healing. Mind over matter.

Thankfully after almost 2 months a few of my pains have subsided (head falling asleep, broken pinkie and ring finger). They are hitting less frequently and less powerfully. The stabbing pains are still there intermittently, along with muscle and joint pains, but it's all nothing compared to my face. I'm trying to get back to eating WHOLE FOOD PLANT BASED, regularly visiting a massage therapist, chiropractor, doing stretches, and following a stricter sleep schedule.

I tried eating a Keto diet per my endocrinologist's recommendation. The last time I'd met with her my anxiety was quite high. I had a goiter, my thyroid had grown too much and was causing compression issues, and she recommended SURGERY to remove my thyroid. We spoke for 5 minutes about surgery and she tried reassuring me it would be just fine. She then said I could eat Keto between then and my next appointment in hopes of improvement. {She also wasn't that great at communicating and with her records. ugh}. This time when I met with her, I explained that the Keto diet was torture. My body was struggling and she was quick to say that some simply don't do well on it. Stop immediately. I also asked her about surgery and what she thought this time. She said, "Don't take this the wrong way, but I feel like you would be a patient who would have EVERY complication and problem. You remind me of one other patient of mine. We removed her thyroid, her body is NOT accepting the thyroid medications, and now her levels are OFF the CHARTS!" I was relieved because my neurosurgeon also recommended avoiding any possible surgery in the future. (Mike asked him what he thought about a thyroidectomy after the endocrinologist recommended it.) She changed her tune so much from the last appointment and this time we were on the same page. I'm hoping I can tweak my diet further to bring relief at least to some extent.

We still don't know for sure if my left side pains (from the top of my head all the way to my heels) are MS related, muscle related (sleeping and walking issues while my left side tries to over compensate for my right side), or a combination of the two. My chiropractor thinks it could be a combination of plantar  fasciitis and possibly a MS exacerbation. But we are working on it all as if it's just walking, sleeping, over use, and stress related. My stress has been higher because of a few other things and we know stress and heat are the WORST for my MS. I'm just hoping and praying that MS isn't eating away at the nerves in my hand too.

For now I'm just trying to go with the flow and do what I can. Even with the new issues, I am doing sooooooooo much better than I was last year. I can handle this stuff! It's funny how feeling like your hand was broken in several places is no biggie. Others have literally had to lend a helping hand and I sure am grateful for their outstretched arms to lift me. I also appreciate God's grace, the cooler weather, and my cute little family. Life is crazy. Mostly just crazy good. =)

*New added stressors: I'll write about it later. Good stress.*

Saturday, March 3, 2018

Saturday Songspiration: Prayin' by Ke$ha

This was the first video/song I loved from Kesha. There is a depth of meaning and symbolism I had not seen in her music or many music videos out there. Sadly, she's gone through a lot of horrible struggles that brought out this song. Granted, most of the video I'm sure is intended for Sony and the doctor. It doesn't entirely fit with my situation. But I take the message of, "Hope you're praying," as a personal directive to pray often. Truly, the overall message for myself and the medical world fits to an extent that touched me through this video. I especially can relate to the day of my failed minor brain surgery. Waking up in the middle of my surgery and not being able to go back to sleep felt quite like she starts in both the coffin and the wreckage in the middle of the ocean, the bleak unknown. I also felt like I was abandoned by everyone in the medical world as each of them told me there was nothing more they could do for me. What a blessing prayer has become to me, specifically (not so much anyone else praying for their own soul). When my only options for healing, survival, and communication were through God, prayer became a priceless blessing.

When I first saw this video I thought it was beyond bizarre. But when you consider the pigs to be my anesthesiologist and my neurosurgeon, who stood over me and caused me pain (unintentional), you can see my perspective. I literally thought they were killing me when I woke up on the surgical table. I screamed (as she does), I cried (it felt like acid running down my face), the numbness was unrecognizable, the severity of pain was excruciating, and I worked hard to hide the pain so I could just leave the hospital as soon as possible. As the days went on, I put on my "face" like war paint getting ready for a war (with my own body) every day, facing each moment in a funny death-defying mixture of fear and faith. =) (I know it's a silly paradox to the extreme and they mix as well as oil & water. But there were some ups and downs like the weather in Kansas; one extreme to the other in no time flat). Maybe the pigs are my pains (anesthesia dolorosa, trigeminal, occipital, and geniculate neuralgias, MS, fibro), the net my limitations, the wings like a sparrow God never forgets, the piano symbolic of the healing power of music, the whale a symbol of God's majesty, the colors like a rainbow that comes after the rain and tears, the TVs mixed messages of what really matters, false realities, and where my value stands, and so many more symbols and double meanings.

Thankfully I had a great deal of support from friends and family, learned how to see the color of life in time, and am coming to peace with it all. I am definitely changed and I'm still chained down to an extent. I have a long ways to go. But, just as I started to move my own body from the surgical table, learned to smile, laugh, and talk again despite the pain, and am piecing together my life through prayer, God, and support from angels here on earth and those on the other side, I see a great deal of HOPE and happiness.

When I see this video it inspires me to fight. To go outside more. I've avoided the sun because of what it does to my body. I've stayed inside because of the unpredictability of so many of my diseases, triggers, and attacks. When I watch this I want to pray and then DO something. It inspires me and reminds me that I'm NOT alone, abandoned, or trapped. Peter started to drown and called out. Kesha felt like she was drowning and sang out. I've felt like I'm drowning and I've reached out. The blessings and support have been life-saving. We can be saved and walk like Christ walked with his grace and peace. Above water, facing forward, looking upward, reaching outward.

Also, #freeKesha

Thursday, March 1, 2018

Rebecca the AMAZING

In the last 4+ years I've had 5 people whom I could relate to with physical trials. Sadly, in the last year 3 of those dear people have passed away. Rebecca was the one I was the closest to. She and I exchanged gifts, laughs, thoughts, support, memories, random messages, and loads of love. The last few weeks of her life we talked about death, the next life, fears, funny things people say, funeral, pain (she surprisingly didn't have a lot of pain through parts of it), her family, living for the day, great memories and "soul sisterhood." She cracked me up calling herself cyclops and talked about how she was struggling putting into words everything she felt and experienced ("Win, Win").

These are treasures to me!

She was incredibly talented and thoughtful.

Rebecca taught me a GREAT deal from the first day I met her. These past years she has served me many times even in her suffering. She made a quiet book for my daughter to get through church when Mike was on the railroad most Sundays. She sent movies when I was home-bound. When my hair was falling out she sent this powder stuff to help my confidence. About a month before she was sent home to die she sent me a rock with the word HOPE engraved and little notes of hope to open when I was feeling lost. She sent messages, support, thoughts, and love in the most Christ-like way you can imagine. She also showed me how to LIVE and THRIVE. Her blog alone is about thriving and she truly lived moving forward with HOPE. She was a light to everyone who knew her. ( She didn't stop living, wallow in self-pity, or live in la-la-land. She accepting things as they were, processed them, and then got up to live each day. She truly learned to thrive despite great trials. She fought an aggressive cancer FOUR times in five years! She passed away at only 35. And yet the things she accomplished in her short time on earth were astounding. Even more than that, though, were the hundreds...thousands of people she blessed.

I'd like to say that the past two weeks I've been able to focus on the positive. But, I've kind of sucked at it. Not only are there several extra stressors coming up in my life, which are also affecting me physically in new ways (just MS spikes, nothing like my Oct-Dec relapses), but I'm just not dealing too well with Rebecca's passing. However, I can't deny the reminder over and over that she had a great deal of uncertainty and struggles but continued to make the best of it. Take control over what she could and live to the best of her ability! The best way I can mourn her life is to honor it and follow her example.

I've decided I need to accept the pain more than I have before. Instead of waiting for it to pass or hiding away because I'm too afraid to bring on more pain, I want to THRIVE, as my dear friend did! By doing more, I accept that more pain will come. I didn't realize how much I smiled until I couldn't. I am known as "the laughy girl," laughs-a-lot, or the girl you can hear a hallway away, but through the past year I lost some of that. I was forced to stop laughing, smiling, & talking, but I'm ready to thrive again. To stop just "not dying," but LIVE again. I'm making this next year my "Lazarus" year. I can't bring Rebecca back, but I sure can live as she would. ALL IN!
She noticed I was struggling carrying my things and the humidity as we were walking the streets of Italy to the monastery we were staying in. She offered to take my bag, even though she had her own. Symbolic in so many ways.
We LOVED Greece
Ephesus, Turkey
A guy outside of Turkey wanted to take us where we wanted to go. But Rebecca and I didn't feel good about him. Thankfully we found someone else and shared with a cute family. She followed the Spirit and her heart in so many ways.

Some of my FAVORITE people on the planet! (Greek uncles and aunt, Rebecca & Brecken)
Night train through France into Italy was wildly entertaining. Pretty much anything with Rebecca is deeply spiritual or wildly entertaining!

Rebecca was getting a better view of the Queen of England. The strength and balance she had in life was admirable. 

We stayed in a few castles in Ireland and she went with me to explore the whole place. (There were a shocking amount of doors and windows unlocked. haha). When she entered a place she didn't just enter, she ENTERED and explored! =) 

I have cried and cried that I will no longer hear her voice (Voxer deleted all of our messages) or get her messages. Maybe I'll be lucky and she will send messages in other ways. 
At a medieval banquet in a medieval castle, this guy was hitting on her SO much telling her in HIS castle she would be his queen. All while his wife, who didn't speak English, sat across the table. Rebecca was a CATCH and admired by young and old. 
Where they used to fight and then we had to fight our bodies even more back in the states. 

Lough Key castle was the one we rowed to in the rain. Rebecca let me use her camera to record video and take pictures. The picture on my blog was from this little adventure. I love that she included that part of our venture in her memorial video too. Recently I thought of the song, "Row, row, row your boat gently down the stream. Merrily, merrily, merrily, life is but a dream."

My chickanas in Northern Ireland near a massive rope bridge. They encouraged me through my fear of heights. Who knew years later they'd encourage me through other fears?

She was beautiful inside and out!
Always the adventurer. She saw this in the airport and we decided to go there first the following day. This was how Rebecca lived her life. She saw an opportunity and took it. She saw what was below, but focused mostly forward and looked up. 



I used to love watching the Olympics. Strength, inspiration, beauty.

But this year was harder.

I once owned a Burton snowboard and DC boots...for a week. My car broke down so I had to return them. Nevertheless, when I had an opportunity to get on a mountain, I took it. Snowboarding used to be one of my favorite hobbies. I also used to love going to high school and college games, but my FAVORITE sport to watch live was hockey! I cheered louder than most cheerleaders in any sport, but especially in hockey. (Hockey cheerleaders would probably be hilarious.)

I've given up most of my old hobbies simply because I'm limited. But, as I watched the Olympics I caught myself getting angry. I want to get back to doing those things, but my immediate thought was..."I'm disabled. I can't. I wouldn't make it a yard. The pain would be too intense."

Then I saw a commercial for Toyota. START YOUR IMPOSSIBLE

"I've outrun fear. I've outrun pain. I've outrun anger...and doubt...and self-pity. But it's not how far I've come, it's how far I'll go."

I bawled. BAWLed. He uses everything he's got to take it ONE more step. I don't struggle walking that much. But I do feel like I've moved through this past year at about that same speed.

I've accomplished a lot this past year. As in...I didn't die. I've learned to live a little more each day. But, I've avoided a lot too in attempts to keep my pain at bay. I don't feel like I've outrun fear, pain, anger, or doubt. In fact, they've taken over my body and my life. (Anger is a new one, although you wouldn't know it if I hadn't told you.)

When my friend, Rebecca, and I spoke before she died, I thought about the life she has lived. She had to fight over and over, but she chose to THRIVE. She lived DAY to DAY and really made the most of her time. She wasn't one to wallow in self-pity or live in la-la-land. She accepted struggles, took time to get through it, and then stepped up and thrived.

So, I decided that I CAN snowboard again. Why not? I may only do one slide down the bunny hill, but oh my heart, I could try! Who cares if I fall, twitch, and cry because of the pain? I'll have done it on a mountain instead of my couch. What if the most I do is buckle in my boots, fall all over before I set a foot on the powder, and have to sit down again? Hot chocolate and a fireplace with my love doesn't sound bad either!  Bring it.

Why not try a hockey game again? The cold is hard on me and I can't open my mouth wide much, but I could attempt a game. Even if I only last 10 minutes, I will have done it! Play on!

I turned 39 recently (GASP) and have one more year until I'm 40 (double GAASP). So, I've decided to do 40 things before I hit 40. Instead of stepping lightly through life, trying to avoid as much pain as possible, I can accept my pain, fear, doubts, and recent anger, and allow it all to push me to new heights. I don't want to wait until it passes or avoid as much as possible to keep only 10% of pain away. I want to be fearless amidst the pain and doubts. It will take ONE step at a time and I'll do it WITH the pain. **If you have suggestions to add to my 40 TO DO list, please let me know!!!!

40 TO DOs before 40

  1. Snowboard
  2. Visit a new state
  3. 40 days NO sugar
  4. Visit 4 friends 
  5. Travel more than 400 miles by car
  6. Take 400 pictures
  7. 40 positive posts via Facebook
  8. Memorize 4 scriptures
  9. Write 40 letters
  10. Swim
  11. Watch 40 movies
  12. Make 40 people smile
  13. Set up office
  14. Talk to 40 people on the phone (gulp)
  15. Watch 40 sunsets or sunrises
  16. Plan 40 WFPB meals
  17. Record all blessings
  18. Write 40 pages
  19. Sleep 10 p.m. to 6 a.m. 40 times
  20. Make 4 cards
  21. 4 Scrapbook pages or crafts
  22. Lose 40 pounds
  23. 40 hours at the temple
  24. 4 date nights
  25. Read at least 4 books
  26. Donate 40 things
  27. Help 4 people with something they can't do for themselves
  28. Anniversary celebration 
  29. CAMP!!!!
  30. Calligraphy
  31. Paint 4 rocks and put them in public places for others to stumble UPon (not on)
  32. Involvement with a charity or institute positive change
  33. Find 40 butterflies
  34. Appreciate changing seasons in 4 ways (fall leaves, tulip festival, snow angel, etc)
  35. Lake Day/Night
  36. Make 4 new meals
  37. Highlight the New Testament
  38. Frame and put up 4 pictures
  39. Water Aerobics
  40. Symphony

Sunday, February 18, 2018


I’ve had MS longer than I haven’t had MS. It’s so strange to try to remember what life was like before I had MS. In fact, I had small episodes when I was a junior in high school. I was a really crappy volleyball player, but it sure was fun. :) (Vision, hearing, nausea, dizziness, and intestinal issues came and went, but didn’t become permanent issues until a few years later).

It’s been almost 5 years since I’ve been able to go outside more than once a week without big issues. 
4 years since my intense stabbing pains (occipital & trigeminal neuralgias and thyroid issues) and some of my worst MS exacerbations. 
3 years since we had no jobs and moved many times. 
2 years since I had so little hope and help and then was flooded with love, support, and strength from others like the windows of Heaven were opened and there wasn’t room enough to hold it all. 
1 year since my failed minor brain surgery, anesthesia dolorosa, and Mike’s surgery (+ 4 days hospitalization for both of us). 

And I finally feel like most days I’m okay with the new normal. Last year when I was told to just take aspirin for my constant burning lips, stinging tongue, sensations of bugs crawling under my skin, hot poker stabbing my eye, electrocution, hot coal near the incision point, an ice pick down my ear, yanking out my jaw, kicking in my front teeth, swelling, fever, cough, and a few times of passing out or getting close, I truly thought I couldn’t live through it. I prayed every minute of every day-literally. At first it was to survive, to make the pain go away, to just get through that minute. In the beginning it was about not dying. Then it became begging for a reason to live. I couldn’t see living another minute, let alone another YEAR. The fear and depression I had when I was 19 and thought I was going blind and deaf pales in comparison to the fear and depression I had as my neurosurgeon said they had missed V1 and walked away. It intensified when I met for the follow up. He said my nerves were so, so, so badly damaged, I needed to go to the ER immediately, and there was no other surgery they could do for me. There was simply nothing left for them to do to help me at all.

I used to dream big. And I accomplished most of those dreams. Travel the world. Serve others. Get a range of education. Help children. 

And then I started dreaming small. Eventually I simply stopped dreaming. I might as well have become the leader of the zombie apocalypse minus the brain eating. 

I thought I’d focus on accepting that I’m extremely limited and to only dream tiny dreams in increments the size of a tick. Did I mention I used to tick when my pain was bad?

Anyway, acceptance to me in this case for the last few months was in a sense giving up and trying to be okay with it. Dream less. Do more simply. Until I just stopped dreaming.

But when I stopped dreaming, I stopped living. 

What I needed wasn’t to learn to be okay with little to no dreams. I didn’t ONLY need heavenly grace to make everyone else okay despite my limitations. I thought this year I would accept new challenges and accept the new me, while saying goodbye to the old me in almost every way. I thought I’d pray for interventions in everyone else’s lives and let myself off the hook of perfectionism. If I repeated enough, "I'm okay," eventually I'd believe it. Magically after a year I’d be more okay with an empty version of me. It was like I realized I’m so much “smaller” than I used to be and was trying to change out the full size mirror for an itty bitty hand held one. 

But the more I prayed (still a work in progress), the more I realized I was focusing on all the wrong things. 

Some say “GRACE” is synonymous with “DIVINE POWER.” The scripture that has come to me over and over has been, “Pray always and be BELIEVING.” {“pray always, and be believing, and all things shall work together for your good,” Doctrine & Covenants 90:24.} I was trying to tell God that I give up all my power and essentially just give up. In time I realized it was Satan's plan, not God's. Instead of dreaming big, then small, then not at all, I simply had to learn how to dream differently.

You never really get used to the pain. But, you get used to dealing with the pain in a sense. It's like someone hands you a 50 pound bag of burning coals. You carry them in any way possible (some on the face, in the mouth, on the lips, heart, etc). The burn still hurts. It is still there begging for attention. Smiling, laughing, talking, moving-they all hurt. But it's worth the hurt to push through. You learn to find things to smile about, laugh with someone, and talk through the pain. Eventually you find that the coals haven't left, but that you have found how to live with them. Some people find empowerment by walking on hot coals for a few seconds. I suppose my anesthesia dolorosa has given me that opportunity in massive ways. I flinch less, focus more, and have learned a great deal. Trigeminal, occipital, and geniculate neuralgias come and go. You never really know when they will come. But AD has given me the chance to always be prepared. It has taught me to simplify in a bigger way than MS has most of my life. Humility, a reliance on God, seeking out the small joys in life, finding my own strength, living when it would be easier to die, peace amidst the raging storms, and so much more have been just some of the "things <that> shall work together for <my> good." If there was a way to get rid of my AD/TN/ON/GN/MS, I'd give it up in a second!!! But, if I can't, I'm grateful that I've found strength to persevere nonetheless.

A very, very dear friend of mine passed away recently. I'm not ready yet to talk much about her, but I can say that she taught me a GREAT DEAL about service. "Empathy during agony is a portion of divinity." (Neal A. Maxwell)  One of my greatest "pain relievers," has been service and simple acts of love to others. I'm NOT saying I'm divine or even good at serving like my friend was at all. AT ALLLLLLL. In fact, I've felt quite selfish the last 5 years. But, she was an incredible example of Christ-like service. It may take me a lifetime to get to her level! If I could be at her funeral tomorrow, it would be what I'd tell her one more time.

Everything in mortality is to get us closer to divinity. EVEN pain. Maybe especially pain. It comes in all forms. It can make us better or bitter. Simply knowing my dear friend Rebecca made me better. Being like her will make me even better. Looking to Christ, asking God for strength through the fire, and allowing the refining process to change me is what will help me not just barely survive, but to eventually learn to thrive. 

Tuesday, January 23, 2018

A year later and maybe I should EXFOLIATE MY EYE to appreciate everything!

Most anniversaries are a wonderful time to celebrate beautiful memories. But sometimes you have wretched anniversaries filled with sorrow that tear down that calendar of memories. Often the uncertainty of the future haunts us into a paralyzing defeat.  I have to confess that instead of celebrating how far I've come in a year, I focused instead on the challenges I still faceSorrow instead of celebration. Wretched. I tried thinking of what has improved in a mere 365 days. I considered what I can do now WITHOUT pain that I couldn't do this time in 2017...very little. When my neurosurgeon explained that most anesthesia dolorosas heal in 1-3 years, I expected at least 1/3 of my face/ear/head affected would be much better. I only have 2 teeth, a part of my nose, and a small part of my face by the incision point, near my mouth, that are no longer numb and constantly burning. But, it often feels like my teeth are wired shut on top of the surrounding teeth being yanked out, front teeth kicked in, tongue stinging and lips burning. Thankfully the level of pain is dramatically less than it was a year ago.

I'm sick again, though, like I was in January and February of 2017! I have the same type of thyroid compression issues, asthma, and especially a cough that aggravates the anesthesia dolorosa, occipital, and trigeminal attacks and makes sleeping more difficult. For several days I was depressed and angry, truth be told. On the night of my 1 year anniversary, I accidentally got a microbead from my face wash stuck in my eye. My right eye. I stood in the shower with the water hitting my face much longer than usual, blinked like crazy, later continued flushing out my eye, and eventually the pain stopped moving around. The pain was just in one spot and I figured I had scratched my eye since the pain didn't dissipate. Curse those tiny plastic microbeads that are supposed to "exfoliate!"
Exfoliate my eye.

Halleluja for modern medicine and doctors who can see you in a day! Also, steroids for the eye vs for the whole body are SO much easier to deal with since there were zero side effects. Oh YEAH!

My problem was bigger than that, though, because since I was blinking more and more the stabbing pains in and around my eye greatly increased. I was mad. Why can't I be a normal person where you scratch your eye and that is the single place that hurts? Blinking too much causes a feeling of a little knife stabbing and kid hammer hitting to morph into a sledgehammer and machete inflicting pain consistently all around my eye. Plus the eye scratch. C'mon. Isn't there a song that goes, "Pain, pain go away, come again...never!!!"

The last day I remember being free of pain was the beginning of 1998. I've felt like I have the flu, ran a marathon, pain throughout my body, varying levels of vertigo, and vision and hearing problems every single day since 1998. I haven't had a month of level 1 or 2 on the pain scale since 1991 or 1992. I've now had MS for MORE than half of my life. Humph. Woe is me. Boo hoo.

After about 14ish hours of that dang eye, I decided to go to an ophthalmologist to see if I could get some type of eye drop to reduce the pain or help me blink less. Turns out that whole time the microbead attached to my cornea and wouldn't release. At first she looked at my eye in a blue light. But then she switched it to a white light. She and I were both shocked to realize I STILL had the sneaky, sticky invader in my eye! She got a tool from another room and I don't think I've ever been more happy to see a metal tool coming straight for my eye. Is it ironic that 365 days earlier I'd had a hollow needle inside my skull and face?!?! Only a year and a day earlier I'd had that needle begin burning the V1 nerve and affecting my eye, which was when I woke up screaming. Ironic or symbolic or something-ic seems almost hilarious now. Once the microbead was released I could almost breathe better. It's amazing how broad the physical effects are on the body, let alone the psyche.

It was then that I realized how ungrateful and ridiculous I had been. I had been viewing the past year in a blue light and mood for several days. There have been some miracles that weren't exactly what I'd prayed for or expected throughout the year. But, they were miracles nonetheless. Had I forgotten them in just a few months? I have had a great deal of blessings and improvements, for which I'm incredibly grateful. I have shared some of the miracles and spiritual experiences with some people and some with no one except for my dear husband and parents. I do know, without a doubt, that God lives and loves us. I think I agreed before this life to take on the pains and struggles I have. I'm not 100% sure I knew how tough it would be, but I knew it would be worth it. Impossible alone, but eternally rewarding as long as I didn't give up on God. There have been a few times where physically I regressed and I prayed, "I'm NOT strong enough. Please, God, I can't do this." But thankfully I've had help and He carried me through the fire. There's still some smoldering ashes along my path, but at least I can see through to this side of the flames.

Sooooo, what has changed in a year?

First of all, financially we are SO much better off than we were this time last year or even the last several years!!! It is wonderful and I hope to help others like so many have helped us!

Physically these are the things that I have been able to do or have improved:

  • My depression level has alleviated dramatically. I can see living now much more than I could in January and February last year. 
  • My pain level has gone from a 10 or 9 to a 4-6 most days. My pain levels basically break down like this: 
    • Pain level 10
      • Anesthesia Dolorosa (Jan-Feb 2017)
    • Pain level 9 (Jan-Feb 2017)
      • Occipital Neuralgia 
      • Trigeminal Neuralgia
      • Geniculate Neuralgia
    • Pain level 8
      • ON/TN/GN (March-April 2017 and off and on since 2014)
    • Pain level 7
      • Day 3 of child birth after water broke
    • Pain level 6 
      • Stabbing, failing gall bladder
      • Broken arm for 3rd time in a year when it sloped down like a valley and two nurses had to snap it back in place
      • Cysts breaking on ovary
      • AD/TN/ON/GN when anti-seizure meds are off or I've done too much
      • Recovering from surgery (gall bladder, C-section, endometriosis) and you cough
    • Pain level 5 
      • MS pain, fibromyalgia, and maybe pneumonia 
      • Sometimes AD/TN/ON/GN
    • Pain level 4
      • Most of my days anesthesia dolorosa is around a level 4, especially in the mornings. As long as I'm on schedule with my anti seizure meds and haven't done too much.
      • Hour 12 of something stuck to your cornea
    • Pain level 3
      • I don't remember
    • Pain level 2 or 1
      • When I was a child

  • 3 times in December I was able to shower without even feeling pain for at least 5 minutes
  • When I cry (which isn't that often), it no longer feels like acid is running down my face
  • A handful of times I've been able to drink something hot or cold without pain
  • I can sing a line or two with little pain
  • Sometimes I can hum and the rattling of my teeth is okay
  • I can drive some
  • I can talk with someone for about 1.5 hours spread out throughout the day with ZERO pain
  • I can laugh a bit with NO pain
  • Wind isn't nearly as painful
  • I can eat most things without problems
  • I have trained my body to sleep on my back, thus reducing the hip and shoulder pain from earlier in the year
  • I no longer am embarrassed by how I look on any level. It's kind of freeing. 
  • I very rarely twitch or need to use paper/pen or sign language to communicate anymore!!
  • I am LIVING again and the pain and uncomfortableness bothers me less. You can't tell by looking at me, more often than not, that I'm struggling. I've developed skills and tools to help me get through the days.

And most important of all, spiritually I have improved by
  • Finding more HOPE, FAITH, and LOVE than I have ever understood or felt before in my life
  • A deeper relationship with God and Christ
  • Miracles
  • Deeper relationship with 'angels' here on earth and on the other side of the veil