Serving its Purpose

I'm writing all of my posts weeks or days after the work, so I want to just declare that my first day with this project was May 27, and it was June 25 when I realized this project is serving its purpose!  To help me deal with the anxiety, that consumes my world, even when I'm NOT having a flare-up.

On June 18, I went to St. George to help my mom who had just had major surgery on her spine.  I wasn't sure if I would go down to help because "what if the pain hits"?  I would be of NO use to anyone if my pain hit while I was there.  I originally planned to send my girls to help out in my place.  When it got closer to the surgery, I decided to go.  This was my mom having major surgery.  I can push through the pain for this.  I might not be able to give 100%, but I can give.

I went and didn't end up having any level 10 pain.  Which was beautiful.  I was grateful for the opportunity to help my mom until I couldn't help anymore.  I am still limited in life with narcolepsy.  My 100% is completely different, and most of the time less than the average human :).  I kept as busy as my body would let me, so there wasn't really much time to worry about the pain coming.

I came home on June 23, rested for a day, and then BAM!  On June 25, all of that horrid, life-consuming, anxiety-about-the-pain, tried to suffocate me.  I hated it!  I wasn't in pain, but I was afraid of it.  

I was immediately drawn to my project.  I went outside and fiddled around, starting here, moving there, changing direction again....I couldn't quite figure out what I wanted to work on, until I looked at this corner where I ditched the old grass cuttings.

I found a flat rock to sit on and a bulky, sharp rock to pound and/or rub the grass clippings to separate the dirt from the grass.  The work was very tedious, but perfect for the moment.  All of the anxiety about when the pain might hit me again, left.  I calmed right down.  Beautiful.

When the mound of dirt would pile high enough to nearly cover the rock, I moved the rock to a clear space and started over.

The two days I worked on this might have been two of the windiest days of the year.  It seems like it would be a really bad idea to separate dry dirt from grass on a windy day when I'm sitting level with it.  After the first day I kept thinking my glasses were dirty, so I'd go to clean them, only to re-discover that they were clean and it was my eyes that were dirty.

It was a bad idea, considering I was repeatedly creating an atmosphere where the wind would cover me in dust, and choke me a few times, but it seemed to be the only thing I could do to take my mind off the anxiety that was threatening me.

I couldn't feel lonely with this little fellow lying on the ground next to where I was sitting.  If I were weird enough to name a snake molt, I would have named this one Wilson, but I'm not that weird, so he remained nameless.  Good companion though.  Just sat there, looking like he was ready to say something, but never did.  He let me do all the talking.

I didn't really do any talking :).  As afraid as I am of venomous critters attacking my trigeminal nerve, I wasn't afraid that this snake skin was in the area I was working.  I knew it wasn't a rattlesnake, AND the kids had just barely seen the owner of this skin slither off into the neighbors yard. 

Eventually, the majority of the dirt was separated from the grass.  By doing it this way, I only had to use 2 lawn bags instead of....I don't know how many.  Plus, I got a nice pile of dirt that was darker than the clay that won't let anything grow out here.

Oh look, my nephews are back for another visit!  I paid these kids in root beer floats to shovel the good dirt into the future garden area and to level this area.  Is this cheating?  I am content with this project, really, but sometimes I just want a little help :).

And.....we're to another end that really isn't an end.  I need to figure out a solid plan for this area.  It can't stay like this. 

But what's more important than knowing exactly how all this will turn out, is knowing that this project is serving the purpose.  I can feel myself coming back to life a tiny bit at a time.  I can see that this work is changing my focus.  All I need is to have faith in the Atonement of Jesus Christ, to help me change my brain patterns, and I will be free! I pray I will stay on track and carry this out to the end.

Squirrel! ....and....Snakes?

This day was a complete "squirrel" from the original project....or maybe it was just another extension.  I don't know.  All I know is that spending so much time outside made it impossible to ignore this jungle any longer.  Underneath this neglected corner of the yard is a rock wall. 

With the back half of our goldendoodle in the picture, it should give you a pretty good idea how high these grasses and weeds reached.

The day before I tackled this area, my friend came over, at my request, to answer some yardening questions and give some pointers.  As we stood close to this jungle, we both heard something defnintely bigger than a cricket make some noise in there.  We took a few steps back......

because this is our other backyard....

And neighbors are always posting pics of funky critters they find in their yards, like this baby rattlesnake....*shudders*

I got my little gardening shears, put on my gloves and protective clothing, and said a prayer before I started cutting away at the grasses and weeds.  I continued to pray throughout the entire process!  "Please don't let anything with venom bite me!  Please don't let anything with venom bite me!."  Over and over.  My heart was racing.  I was sweating more than I normally would have.  I was a terrified person through this process.  I didn't want to find out how venom might affect the trigeminal nerve.  I don't think I want to repeat this one again. 

 

It was nice to see the progress though...

And it really didn't take as long as I thought it would.  So that was nice!  I never did see any critters besides spiders and potato bugs :)

The rock wall doesn't get to stay.  So many of the rocks are shattering.  There are pieces of rock all over the lawn, darn it.

I just need to decide what to do with the good rocks and the shattered rocks.  Another project in the works.

My only other TN/GPN complaint, besides the thought of a rattler attacking my central nervous system, was triggering the annoying sensation of the little creature that sews all of my bottom, right teeth together with his really sharp needle.  

The way I had to bend was a bit awkward and I couldn't figure out another way to do it.  It was only a level 3 pain, which I try not to complain about, because it's much more tolerable than the level 10 pain that comes with a flare-up, but it was really annoying and lasted for about a week, so I'm going to complain about it :).

Faith. Fear.

This doesn't really have anything to do with my Pain Project, but it does have everything to do with TN/GPN.

My appointment reminder to see the neurosurgeon at the University of Utah came in the mail a few days ago.  When I saw it, I panicked a little.  A whole lot of "what if's" came to my mind.

"What if he tells me he can't help me?"
"What if he tries to help me, but realizes too late that he can't?"
"What if I have surgery and I end up worse?"
"I don't think I can hear the words, 'There's nothing I can do."

It wasn't very long until I was not in a good place in my head.  I trapped myself in fear-based thinking, to the point I was ready to cancel my appointment.  Luckily, logic stuck with me enough to stop me.  Why would I cancel an appointment that I have waited so long for???  Makes no sense.  I kept it.

I was a bit frustrated with the doubt going through my head.  I have gotten to the point that I believe I can be healed in this life.  Why would seeing an appointment reminder trigger fear??  Why do I feel like I'm going backwards? NOOOOOOOOOOOO!!!!!!Make it stop!  Why did I have this shift in belief?

I read some words the other day from a mother who is waiting for her son to wake up from a coma.  She said, "Either God will heal my son, or He won't."  I can't even begin to imagine what kind of heart ache this experience is.

As I have worked on my pain project, those words have repeated in my head.  It seems those words were meant to enter my mind at just the right time.

Either God will use the hands of this neurosurgeon to heal me, or he won't.  Whether or not God heals me, the most important thing is, I actually do have the faith that it is possible to be healed.  Yes, I had this moment of doubt and fear creep in.  I know satan's goal is to stop my progression through fear.  But I've already gotten to that point, and it wasn't hard to come back to.  I know that through the Atonement of Jesus Christ I CAN be healed in this life.  Will it be through the hands of Dr. House?  Will it be 20 years down the road?  I don't know.  The important thing is that I have come a long way, and have let go of so much fear, to the point I do believe it's possible.  HUGE.

Thank you, Kami, for your faith and testimony!  Those words truly came at the right time for me to get my faith back on track to where it had already been once before.  We are still praying for your son and your family.

Teal for TN

This is one of the two identical pots I rescued from the strangling grasp of the morning glory.  I love the pots as is, but wanted to create just one thing that represented TN/GPN.

I bought some "Teal for TN" gloves for the rest of my yard projects.  I pretty much thrashed the other gloves I was using to clear out that corner.

The branches I de-strangled from the morning glory came in handy for this part of the project, and for the red boxes.

If I make it to Heaven, I want to request watching a replay of the look on my friend/neighbor's face when I hauled these dead tree branches into my house. 

My family was out of town.  I was getting away with all sorts of bad behavior.  Branches in the house, dirty socks on the table, piles of stickers left everywhere.  All of which got cleaned up and sanitized before they got home.  I decided it's a good thing I don't live alone!

  I cut the branches into twigs.....

And used rocks from the rock pile.....

To put at the bottom of my new "Teal for TN" flower pots for drainage.  Since these flower pots are dedicated to the Trigeminal Neuralgia name, I thought it would be appropriate to put a HOT POKER plant right in the center of the pot :).  I can't wait until they bloom!

Someday I will find a good home for everything and that all of this will make sense.

After all the planting and potting was finished, I had leftover flowers and soil.  I dug my small pots out of the garage and used them for the leftover flowers.  Not really having another place to put them, I lined them going up our front steps.....

Which was a bit of a fail because the pots keep getting knocked over, haha.  I need to find a different place for these that isn't in the children's playground.

Nothing Compares

This Pain Project really did end up to be a project.  My assignment/agreement was to plant a garden, but all throughout the process one thing has lead to another.  It's been more like 8394574345 projects in one.

Before I actually put anything in the red boxes, I took a few days to clear out this small corner of our back yard that we have used as a "garbage can" or dumping area for the last 5 years.

The picture doesn't do it justice.  It was a lot worse than it looks.  The morning glory did a good job covering and strangling a lot of it.

Here is a break down of all the "treasures" and garbage I uncovered during those few days.

~Several different rock piles
~A pile of grass chunks from creating a small garden area last year
~A pile of 10 empty manure bags
~Morning glory
~Lawn rake
~4 tomato cages, 2 of which were strangled by the morning glory to the point they couldn't be used.
~Tree branches from the time my dad pruned our front trees
~2 big pots given to me by a neighbor/friend last year
~A large black piece of painter's plastic, rolled up and twisted with leftover horse manure from the year before

Embarrassing.  I never want any part of my yard to look this bad again.  In my defense, I've been in survival mode for awhile.  This picture could very well be symbolic of many other aspects of my life that have turned into garbage piles since TN started :) 

After the second day of this project, I came in the house completely filthy, sweaty, and gross.  I didn't have the energy to take another step toward my bathroom to get cleaned up.  So, against my better judgment, I sat down. 

Here is a list of reasons why sitting down was a bad idea:

~My spine didn't develop the way it was supposed to.  It is still a question of whether or not I have Ankylosing Spondylitis, which I won't go into, but it's certain I've had arthritis in my low back since I was 16, as a result of bone rubbing on bone my entire life. 

 ~I also have arthritis in my neck, elbows, and knees.  Every one of those places was flared up after my second day of working.  

~I have had a few small tears in my rotator cuff since December of 2013.  That shoulder was aching horribly, with some shooting-down-my-arm nerve pain after all the work.

~A week prior to my working in the yard I sprained the top of my right foot.  I completely aggravated that pain while working in this back corner.

~When my TN and GPN pain got dramatically worse in January of this year, I had to use a text-to-speech app on my phone to communicate with my family.  This created carpal tunnel in my right hand/wrist that has never recovered, even though I haven't had to use the app since February.  The way I was using the small claw tool to break through the weeds produced the worst pain I've had in that wrist since it started.

I have all sorts of therapies for the arthritis, shoulder, foot, and wrist....but I couldn't get to them immediately.  I had to sit down immediately.  Which, I knew was a bad idea.  I know what happens to flared arthritis when I sit down after working :).  And that's exactly what happened!  But, it was ok.  I sat there, aching, and with every single one of these areas flared and on fire.  Even with all of this aching pain, I could  sit there with a smile, because all of this pain combined is nothing compared to the pain that shoots through my ear, face, and throat with the TN/GPN.  This was good pain. 

  I accomplished something, and that felt good.

I allowed myself about a 10 minute rest, then chuckled at myself with each attempt to get up out of the chair.  I pushed through the pain and got myself up, had my warm shower, and proceeded to do all of my therapies before bed......and repeat for another 2 days.

It took about 4 days to clear this area.

WHAT A PROJECT!  

The corner is basically cleared of all garbage and treasures, just waiting for me to make a solid decision on what to do with it. 

The timing of this part of the Pain Project was perfect.

1.  The neuralgia pain wasn't flared

2.  My family was gone on a family vacation and I was able to completely commit to this project, stopping only for needed breaks and not to do mom duties :).  My youngest stayed home, but spent a lot of time playing with his buddy.  He came out once in awhile to help me.

I don't go on long family vacations.  I'm terrified of getting slammed with the pain and not being in my own comfortable environment to suffer through it.  The furthest I am willing to travel is 5 hours, back to my home town of St. George.....and only for important events. 

Typically when I send my family away without me, my heart completely breaks and I feel guilty for not being with them.  This was the first trip they've been on where my heart didn't break.  And I felt guilty for my heart not breaking!  Someone in the TN support group mentioned that by letting them go have their fun, and not expecting them to stay home forever because of me, is an act of love.  I hadn't thought of it that way before.

I know my heart NOT breaking was a tender mercy from Heavenly Father.  This is just how our lives are right now, and it was time for me to accept this part and carry on.

Before they left, my husband said "Hopefully by next trip Humpty Dumpty will be put back together again", haha :).  That would be awesome!  But, until I am put back together, I am officially past the heart break. It feels much better this way.

Just in case you needed to see a picture of my filthy dirty socks....

I took about a 10 minute break about every 45 minutes to an hour.  Each break I would get a drink, wash my hands, and pick all the stickers out of my socks, clothes, and gloves.

I'm still picking stickers out of my clothes!

Please, Don't Make Me!

The same Saturday I bought the veggies and herb plants, I noticed these old, orchard crates for sale on the local online yard sale.  I wanted to put the veggies in the ground and put the herbs in some kind of a raised garden.  When I saw the crates, I got pretty excited about the possibility of using them for the herbs.  So...I bought 9 of them.  I didn't buy them that Saturday, I bought them the day after we bought our second car.  So I was still in pain.

I went straight from buying these crates to meeting up with a TN friend from our small, local support group.  The purpose of this get together was to meet another TN sufferer, so there were 3 of us total.  All of us, sitting at the park, on a windy day.  Yikes!  Talking (a trigger) while sitting in the breeze (also a trigger).  I don't think I will be doing that again anytime soon.

Later that evening I found the leftover primer and claimed a small area in the garage for myself so I could prime and paint the boxes.  It was a bit cramped, but it was much better than working out in the wind.  Priming these boxes took way longer than it should have.  I couldn't concentrate on what I was doing.  Dip, brush, brush.  Dip, brush, brush.  That's all I had to do, on repeat, but when the pain DOES. NOT. SHUT. UP, and there isn't an option for relief, it makes it difficult to concentrate on simple tasks.  I kept having to stop.  And breathe.  And think.  I had to keep reminding myself what I was doing.  I think it's safe to say I often found myself in a mild state of confusion.  I was pretty frustrated by this process and....really, I probably should have stopped and come back to it when I was mentally ready.  BUT, by having the plants already purchased, I felt obligated to finish.

The first day of priming, I faced outside of my garage.  I hoped looking out might benefit my mood.  I'm not sure it made any bit of difference.  The second day of priming I faced inside of my garage, with my back to everyone, so no one could see how much I was crying.  I hate crying when I'm in pain, because crying triggers the pain to be worse, but I get to the point with each and every flare up that I simply can't hold back the tears.  It's too much.

All I wanted in that moment was to take a nap in the Spirit World.  I'm not a suicidal person, but I wanted to be done here. I don't know if I've had a single flare up where I made it through, from beginning to end, without wanting to die already.  Sometimes begging and pleading for Heavenly Father to "Please don't make me stay here!"

I've debated on whether or not this is appropriate to make public, and/or to say it like this, but it's the truth of my world, so I'm going to say it. The handsome fellow sitting down the chair is my grandpa. He's 87 years old.  All of these beautiful women in the picture are 6 of his sisters.  One brother, not pictured, was too sick to travel, and one sister, not pictured, has passed away.  8 out of 9 siblings are still alive.  Their parents lived to be 97 (my great-grandpa), and 94 (great-grandma). 

My great-grandparents passed away when I was 20.  I used to think, "Sweet!  It's in my genetics to live a long life."

Since the TN started, I have begged Heavenly Father many times, "Please don't let me live that long!"  I can't tell you how many REAL LIFE panic attacks have been triggered just by THINKING about living a long life.  I love my grandpa and my great-aunts.  I am happy for the time they've had here and for the amazing examples they are. They are great people :).

________________________________________________________________________________

There wasn't any blood, but after much sweat and tears, the boxes were finally primed!  Sheesh, it took long enough.

 Day 1 of painting the boxes.  I was all cried out and ready to face outside again.  I was pretty exhausted.  The more days into the pain cycle I get, the more exhausted I am. 

 Painting the boxes was pretty much the same story as priming.  I had to take a lot of breaks and remind myself what I was doing.

This picture is titled, "PLEASE DON'T MAKE ME STAY HERE!"

 

What was I thinking?  Oh ya, I committed myself to a time-sensitive project at a time I wasn't expecting to be in pain.

 

The pain was gone by the second day of painting.  It. was. awesome!  I got through the rest of the painting like a champ.  I was still babying myself all day trying not to re-trigger the pain, which I have done plenty of times in the past.

I chose a fun red color.  I have narcolepsy.  When colors stick out a little, it provides enough stimulation to keep me interested and alert.  Now was the test to see if they would actually work as grow boxes.  I didn't know if the wood was protected enough with the primer and paint.  I didn't know if adding soil would stress the fragile parts of the wood out.  I've never seen or done this before.  I had no idea what to expect. 

I lined each box with weed fabric in hopes to protect the wood even further as well as to prevent the paint toxins from getting into the soil.  I put small rocks and twigs in the bottom...

Then put the soil in and planted the plants.

I ended up buying flowers to help fill in the extra boxes.

We'll see how it goes.  The end part of this crate box/grow box project was much more pleasant than the first part!  I'm so happy this part is finished.  I'm sad there isn't really a good place for them right now.  I'm working on it.

Recruiting Help

As I said in my introduction post, the therapy session inspired me and I went out and bought some vegetables and herbs to plant in my garden.  It was a Saturday.  My intention was to plant the veggies and herbs the following Monday.  My timing seemed pretty good as I had recently endured a 5 day flare-up.  It felt like I shouldn't have to worry about getting slammed with another so soon.  Although, I really don't get to know exactly when the next one hits.

While I was sleeping on Sunday night, I managed to trigger another flare-up by scratching the inside of my nearly-constant, itchy right ear (neuralgia side).  Sometimes I can ignore the itch.  Sometimes I can't.  I scratched inside my ear and immediately triggered the repeating shocks of pain through the right side of my face.   I woke up on Monday morning in a full on flare-up.  I was so discouraged and thinking, "I knew it.  I knew the garden was a bad idea.  These plants will die before I even get them in the ground."

I opted out of putting the plants in the ground this day...because of the pain.  My husband and I ended up going out to buy a second car instead.  I would never recommend someone with Trigeminal Neuralgia go out and buy a car ALONE while they are in pain! My mental capacities are severely limited when I'm in pain.

As one gal was going through and explaining different warranty options, she mentioned how molding isn't covered.  In my head I thought, "I have NEVER driven in a car with a mold problem.  I've never even heard of anyone having a mold problem.  How does a car get a mold problem???  Do cars in Washington state mold??  Why is a mold problem even considered as being part of a warranty?" It wasn't until about 30 minutes later when she said the word "molding" again I figured it out!  It made me wonder how many moments I've had like this while in pain.

I'm so glad my husband was part of the process.  I didn't have to think about anything.  My husband is completely capable of buying a car to fit his needs.  All I needed to do was sign the papers where I was told to sign.

Through the entire car buying process, the neuralgia side of my head and inside my ear were so itchy, it was taking every bit of control I had to not sit there and scratch all over like a maniac.  Anytime the salesman would leave the room I took advantage of the opportunity to scratch away.  The bad part about scratching all the itches is that every touch to my head triggers repeating shocks of pain through my ear, face, and throat.  My choices are to let the itching drive me mad, or scratch all the itches and let the pain drive me mad.  They're both dumb. :)

Another frustrating part of this car buying process is, I had been praying for a second car for awhile.  We have needed another vehicle for awhile.  We had been a single car family, living in the boonies, for 2 1/2 years.  It was time.  I had been praying and the day was finally here....and I couldn't even feel a little bit excited.  It should have been an exciting moment, but it wasn't.  The only thing on my mind was the pain...and the moldy car problem....but mostly the pain.

I was happy to come home and be done with being anywhere but my house.  I noticed all the garden plants sitting on the counter.  These lovely, green, seeds-that-thrived, plants.  I thought about how sad it was going to be to throw them away considering all the money I had spent on them.  I felt guilty for wasting the money.  In the end, the pain trumped all of my guilty thoughts and I was able to walk away from the plants and go about my day, dealing with the pain.

We had family show up that night to stay with us.  I always dread having to be entertaining when I'm in pain, but nothing about their stay was anything to dread.  They didn't expect me to be anything more than I could be.

When I woke up the next morning, and thoughts of all those wasted plants came to my mind I thought, "Oh, heck no.  I have 4 kids.  My nephews are always willing to help.  The ground has been tilled.  The plants are purchased. We're doing this!"

I gathered all of the tools I had available to offer......

                                                          

I gave everyone a specific job.....

And our tiny little garden space was planted very quickly.

 

 It's thriving 3 weeks later, with the exception of 2 plants that didn't survive the planting.

I pitched in too.  It wasn't a pain free experience.  I wasn't excited about the process like I had been with past gardens.  Even the slightest breeze that touched my face was excruciating.  Bending over sent shocks of pain through my face.  Every instruction I had to give was painful.   I look back and wonder, "how in the heck?"  I can't promise I will ever commit myself to planting a garden while I'm in pain ever again, but I'm glad I followed through this time.  I'm glad I'm at least trying.

Stay tuned!  There is more to come...as soon as I get it written :)




P.S.  With the inspiration from my husband and a friend, I've decided it's in my best interest to sleep like this from now on......

Ok, not really with the cone of shame, but I have been sleeping with a sock on my right hand.  When winter comes back around I will buy an actual, real life mitten.  The socks always end up on the floor or under my pillow before I wake up in the morning.