Monday, July 14, 2014

all I can manage for tonight

  • I cancelled my much anticipated silver in six retreat.  The one I worked all year for.  The one that has been inching closer and closer on my calender.  The one that's marked off in yellow and blue polka dots in my planner as my "SILVER RETREAT!"  It stings, it hurts, its real.  And honestly, I don't want to talk about it.  A few days ago I was shuffling through the house.  My 89 year old grandma who helps with Maeve and Henry was there;  she had taken them on a walk while the little ones napped, so I could nap.  (LOVE YOU GRAMS).  As I slunk out of my bedroom my grandma caught sight of me and said "Oh Ashley, you have your trip coming up!  What are you going to do?   You can't go alone and travel like this."  And I had been thinking that for awhile;  ever since the MS thing.  I had kept it a secret thought in my head like, "I'm going to admit when I come back from the silver retreat that I almost didn't go- but I'm so glad I trusted in God and went for it!"  Hahaha.  And then she said those words and I was forced to say something back.  And it sounded like, "Yeah, I know, grandma."  I cancelled my travel plans before Ryan got home to stop me.  
  • I want the leg puffers/pumpers they give you in the hospital to prevent blood clots.  I want them BAD.  Someone tell me where I can get them!?!?
  • This "thing" whatever it is.... whether its MS or bad kidneys,  or just my flippin lot in life.  It's too much to carry on a daily basis.  I thought about this in depth tonight.  How many times have I  gotten on here to declare victory over some thing I can't even grab a hold of?  "I am going to stay strong and eat healthy.... blah blah blah."  It's enough to make me vomit.  The truth?  It's too much.  IT'S TOO FREAKING MUCH.  I can't carry this.  I can't carry it for a day... two days, three days.  It's too heavy.  There are too many blows and knock downs.  It's hard to admit that I'm not "okay."  That things aren't hunky dory! :D (my mom always uses that phrase...)  But they're not.  They're just not.  Some days- some moments I'm given that sweet swish of the life that was mine a year ago.  A night at the park; a visit with a friend.  Those things are so obsolete right now.  When something "big" (like a park night, or a walk, or whatever...) I feel so good.  Warm and normal.  And I start coming up with a grocery list.  I get half way through before I remember "I need to cath myself."  And then the entire sunshiney day dream comes crashing down.  THIS is reality.  THIS is what's happening right now and there's nothing- no magic pill- or oil- that's going to change this.  It's a domino effect;  and I know this.  One step is going to lead to another step, that will lead to another, etc.  I'll take a few steps back; that's for sure.  But its also to be expected.  Anyways, what I'm saying is I don't have anything together.  I'm winging it every day, all day.  But I have the hope of the Lord; and I've said this a million times to Ryan and my friends- I seriously don't know what someone would do without that knot to grab onto.  Obviously I know people do it daily; lose a loved one, diagnosed with cancer, etc.  and they don't know the Lord.  But with my hope and faith in Jesus, its like this giant cushion.  I know the entire world can come crashing down.... just give me Jesus.

Tuesday, July 8, 2014

the whole hossy thing.

My eyes feel like they're glued  Literally, every time I blink, there's a good chance they'll stay shut.  Maybe this is how celebs feel when they get "hospitalized" for exhaustion. Because if that were an option right now I might consider it just for a night...

Wednesday night I was having flank pain and blood in my catheters.   That's normally a sure sign of infection. 

I called my primary and he arranged an ultrasound; unfortunately the only place that was open was the ER- but it was fine; they were expecting me and I was in and out pretty quick.


The  ultrasound tech checked for blockage and back up.  I had neither.  Just two, itty bitty stones (less than 4mm -again if you've passed a stone, less than 4mm doesn't feel too "itty bitty.") that were passing; thus the reason for pain and bleeding.

Was sent home Wednesday night with a foley bag (when I get stones, its easier to put a bag on and literally drink myself silly (with water of course lol!)  and let the urine collect in a bag, versus me catheterizing myself every five minutes and funneling it through a sifter, etc.  Just a huge pain.  So I agreed on the bag, and left the ER determined to flush these stones out.


Thursday I woke up with my bag and spend the day drinking water, flushing my kidneys.  But Thursday night I was feeling pretty bad.  I think I emailed a few nursing friends, soliciting free advice, because that's how I do.

In the end, (early Friday morning) I was beyond sick.  Like felt as though I could die.  For real.  I was one of those dorks that had to be wheeled into the ER by her husband- I couldn't even stand.

They gave me that magic dilauded, which knocked the pain out immediately.  I fell asleep and woke up a couple of hours later, realizing I was in a huge trauma room- like the kinds you see on TV.  And I had doctors and nurses surrounding me.  Somewhere during my nap my blood pressure had dropped to 67/43 and my heart rate was in the high 100's.  I had a temperature and was totally out of it.  Which was probably a good thing; because had I been with it, I would have been scared out of my mind.

I had a doctor (not a nurse- but doctor) above me squeezing fluids into me and a nurse taking my vitals.  I was like a blob. Couldn't even try and move.  I suppose things stabilized (though my BP never got over 100) and the next thing I knew I was in the ICU.  How. DID.  THIS.  HAPPEN?!?! 

As they gave me more fluids, meds, etc.  I became more "with" it and was able to remember what had happened.  I mean, most of it.  There were a lot of empty pieces but I knew I was really sick and I was on the ICU floor.  I knew my vitals weren't good and that  I was being admitted. 

The first doctor I talked to thought I had some horrible disease; like TB or something.  (pros and cons of having a private room- you're alone and its private, but that usually means you're pretty sick)  For the first 24 hours I had over 7 antibiotics;  apparently I was close to becoming septic;  they couldn't' identify the exact bacteria or virus I had.  So they were using wide spectrum antibiotics.  This sucked for a million reasons.  Each med gave me some new reaction;  I itched, I puked, I felt heavy in my chest; it was AWFUL.

After 48 hours my culture finally grew something;  enterococcus faecalis.  A serious bacterium, linked to a whole host of scary problems, often associated with use of catheters. 

Once they identified it, they put me on three antibiotics to kill the sucka.  Yesterday I couldn't take the hospital for another second and braved the question, "Can I  go home?"  One doctor (infectious disease doc) said "NO."  My other two doctors (my floor doc and my urologist) said "yes."  So my dad and I ran with those "yesses" and some how I got myself out of there.  I've questioned it a few times; did I leave too early?  Should I have stayed to be monitored longer?  My vitals had improved- totally normal- except for right before we left.  My BP was 134/90 and my heart rate was 55.  Like complete opposite of when I came in.

Anxiety is playing a good part in all of this; telling me "GO BACK!  Run back to the doctors!"  And then theres another part of me hat's saying "Stay with your kids.  You need to be with your kids."

All in all its bee a trying 5 days.  My grandma is here to help me today, and I appreciate her help SO much.  But all I really want is Ryan.

We'll get through this;  I'm determined.  My love for the kids is so great- that I have a will to get 100% better and become that energetic, fun mom they so deserve.

Right now... I'm just tired.  Anxious.  Full of fear and thoughts. 

PS- nursing friends feel free to PM me a message about why my BP and heart rate were so funky before I left! 

I'm also a human slug.  No really; like can barely get around.  I am crazy tired.  CRAZY TIRED.  I'm assuming this is just from everything that's happened?

I miss my old doctor (Dr. Bigelow) so badly.  I need someone o tell me "You are not going to quit breathing.  You are not going to die from this.  You just need to take your medicine ad rest." 

gahhhhhhhhhhhhh

what a few days, huh?

Seriously though; if you have any kind words of encouragement about me being "okay"- like "hey Ashley I dealt with this same thing last year and I am totally fine now!  Took my meds and all is well!" I'd LOVE to hear it! :D

thanks for all the prayers and love!

xoxo
Ash

Tuesday, July 1, 2014

Paleo, Juicing, Watermelon Island & Wha????

Alrighty... if you follow me on IG, you've seen a bunch of food pics.  I'm on one of those life highs right now.  I have a lot of hope.  And that's such a precious thing.  Just a couple of weeks ago, I was hopeLESS.  Filled with nothing but a lot of fear and anxiety, guilt and pity.

One can only muddle around for so long I guess.  Because randomly I decided I was done with feeding into whatever this (this being MS, or just a neurogenic bladder or WHATEVER) is.

I felt like crap. 

Since my first foley leg bag was placed in February I've gained 14 lbs.  Yep.  That's disgusting.

I had cried almost every day, for a good percentage of the days.  I pulled myself out of my sisters wedding, cancelled anything I could, stayed in my room while babysitters (Tiffany, my mom and sisters, Ryan's parents) watched the kids.  I mean it was a dark.  Dark, dark, dark.  I will give myself credit though; its hard to be happy with a catheter in.  So in a way, I feel like I DID have the right to be upset and grieve for the loss of my bladder function...  but I let it get away from me.

14 lbs later, here I sit.  No better, just worse for putting crap into my body and depending on the hundreds of pills that were pushed at me.

Soooooo... the come to Jesus moment- last week- sometime, it happened and thank GOD it did. 

I have a good friend, Joy, who's been talking about the paleo diet with me.  Honestly (no offense here Joy!) but during those dark days I wanted to throw my phone out the window.  I didn't want to hear about diets or anything.  I wanted to dwell in pity city (best phrase ever used Misty...;)

But after seeing the light, I was intrigued about the paleo diet amongst other things. 

The first thing I did was meet with my neurologist and my PCP.  I told them both I was done with this journey.  No spinal tap, no more pain meds... I'm just done.  They're awesome docs and I think it was the answer they wanted to hear.  They both agreed and said right now the only issue I should be focusing on is my bladder.... and guess what?  Right now, I have that under control because I know how to self cath.  I am like a self cathing- NINJA.  So, BOOM.

The next step was figuring out how to get back on the healthy train.  I missed my oils so badly.  Missed my ritual of lining them up every morning, filling my capsules and feeling them nourish my cells.  That was the first thing I did;  chucked out some pill for " UTI maintenance" and made a capsule of oregano, juniper and fennel- all wonderful oils to cleanse the kidneys.  Step one, DONE.  I think I already felt better.

The next morning, I did my old oil thing- I think there are 13 or so I take?  Anyways- lined them all up, filled my 2 capsules, chugged my bottle of water and cooked steel cut oats.  I hadn't eaten steel cut oats in forever.  That's my go-to breakfast.  It fills me up, gives me energy and makes me feel like I'm ready.  I had been skipping breakfast during the "dark days"- opting to sleep instead.

Then I think I texted Joy and asked her what I need to buy for the paleo diet.  She sent me tons of great info and I went on a shopping spree.

And then she told me my oats were a no-no.

So I reconsidered.... am I really paleo???  Could I really do that?  Hmm...

Then I went a few days eating only fruits and veggies; felt fine- nothing wrong with that.  And I found a TON of amazing recipes- I mean you can basically make anything from fruits and veggies.  Brownies, even FLAN.  (which I made Saturday night.. mmmm:).

Then I decided to hardcore detox the crap out of my body and went on "watermelon island" for a day.  It was interesting- felt good (ate only watermelon & water for a day).  Felt full, etc.

Today, I hesitate to put myself into any category.  So how about this:  I am CLEAN eating.

I am eating fruits and veggies like there's no tomorrow.  I'm starting out the day with a giant slab of watermelon and mango.  If I still feel hungry I make a bowl of steel cut oats. 

For lunch I've been juicing.

For snacks, its been piles of veggies, blue corn chips and hummus.  Well, today it was bananas with sunflower butter and cacao powder.  OMG. 

What I'm trying to get at is.... I'm not putting myself into any ONE category.  I'm just being healthy.  I'm making healthful choices.  I am FUELING my body instead of sabotaging it.  I'm choosing to give it things to work with; whole, unprocessed foods.   

So that's the "diet" or whatever I'm on.  I juice, I eat a ton of watermelon (like literally one a day maybe???), ... I DO drink coffee (that's a paleo no-no) and I have my oats. 

All in all, I feel pretty darn good.  For the first time in WEEKS, I was able to go to Paneras on Monday and work on the computer- I stayed focus; no tears, no wandering thoughts, no "woe is me" crap.  Just worked.  And then cathed myself and then worked again.  Then went grocery shopping and came home to my kids. 

This is life.  It's different than the one I had prior to the neurological issues, but I'm folding, molding myself with it.  Fitting into the grooves and creases without kicking and screaming.  Accepting what is, and getting up every morning. 

I am good enough.  I am good enough to have cute clothes and look pretty.

I am good enough to be a mother to my kids.

I am good enough to be a wife to the most amazing husband ever.

I am good enough to be in my sisters wedding (though I won't throw her all off and re-insert myself- haha- no worries Meghan!)

I am good enough to sit down with anyone and feel just as "normal" as them.  Yeah I cath myself.  Yep, I might have MS.  You bet these things scare me and you're right; they're tiring and wearing.  But they're not me.

Me is good enough.



I am doing an official diet/detox thingy in August.  I was going to start it today but figured I should probably do it myself for a few weeks before directing other people.. haha :D

So August, at some point, I'll have a private event on facebook;  I don't know the details or how long it will last.. but I hope you'll join me!

The only requirements are an open mind to try new things, a few oils (peppermint, lemon, frank, ginger, fennel, slique, clove... ) um more than a few oils.  But I can work with ya.  Just shoot me a message and we'll get things figured out.

;)  Thanks for sticking with me... through the good, the bad, the ugly, and back to the good.

 Life is nuts sometimes, right?





 

Saturday, June 28, 2014

Demystifying the Detox!

So remember my come to Jesus moment last week?  I blogged about it here- (standing up.......etc).

I've been restless with sleep, trying to think of some way to make this journey easier, more impacting for others, and transparently beautiful for me.

I THINK I've come to a solution.

Starting July 1st, I will have a private facebook "event" going 30 days of clean eating & oiling.  I'll be posting my daily meals and juices (juice detox for the first 3 days... yep I love y'all so much I'm going to do it again!)  I'll be posting oil concoctions and protocols that I use to help with losing weight, getting healthy, and back on track.  We'll share daily prayers and thoughts as we go through this, and obviously a lot of encouragement.

Here's the deal;  obviously there will be some who want to do this, but do not have their kit.

This is what I want you to do- get with me (PM me on facebook, email me, etc.) and somehow, someway, everyone in that class will have a kit in hand and ready to go!  I have extra oils I can send you, lemon drop love bags, pocket references and account credits.  The time to jump on the oil choo choo has come!


Those of you with kits, wanting to juice and oil detox, comment on this post on facebook and I'll make sure you're in the event.  Those of you without kits, PM me, and we'll talk about how to change that :) 



 

July 1st or bust!

Wednesday, June 25, 2014

standing up and putting on the gloves.

Confessions:

Back in January I went to my first appointment up at the Mayo clinic.  At that time, I was having issues with kidney stones and bladder infections.  I was desperate for relief;  anyone who's passed a kidney stone knows they're worse than child birth.  For me, they make me sick; fever, vomiting, lethargic and then of course the pain.  And I'm knocked down for DAYS with these things.  DAYS.  Some stones pass quickly; overnight or in a single day.  But 99% of the stones I've passed (and I've passed close to 30 since Stella was born- yeah).... take days to pass.  I end up in the ER, or doctors office, bawling my eyes out, praying the docs will have mercy on me and just BLAST my stones instead of saying "Oh its small enough to pass, here's some dilauded and up your fluids!"  This has been my life for almost three years.  I thought it was bad.  Didn't think I could be hit much harder.  And then came the Mayo clinic... and everything has spiraled down hill since.

My doctors at Mayo immediately took me off my oil regimen.  They "didn't know" (their words) about the oils and therefore couldn't say anything about them.  They DID want full control over my diet, medication, etc. so they could manage my stones.  HAH.

The day I quit taking my oils (I'm talking internally- my regimen of lemon, peppermint, thieves, ginger, cinnamon, endoflex, fennel, frank, digize, and oregano) all hell broke loose.  Literally.  My body went nuts.  I replaced my oils with the medications the doctors pushed at me and I told myself, "this is because I want to get rid of my kidney stones.  The doctors are helping me."

I am by no means saying the docs had ill intentions- oh wait- Dr. Mengle from urology at Mayo- he had ill intentions- but everyone else; I think they really wanted the best for me.  Here's the thing.  Doctors don't know everything.

I have NEVER, EVER been sicker in my life than I am today.  Since cutting out my oil regimen I have A.) been to the ER 8 times (each time given IV antibiotics for bad infections) & have had two foley leg bags placed. B.) have been told I would forever be catheterizing myself because I have a neurogenic bladder- and was taught to self cath.  I now have boxes of catheters in my bathroom.  C).  MS.  Those awful two letters.

As fear, anger and every emotion in between rained down on me, I threw my hands up.  I gave up.  What's the point of eating right, exercising, taking care of my body when it was just falling apart anyways?  Screw. THIS.

People messaged me over and over;  "Take this, eat that, do this, do that!"  And all I wanted to do was be angry and quit.  And yell.  And eat.  And throw my medications against the wall and whine to my doctors and my husband.  It's been a dark few months here.  I can't lie.

I had continued to use the oils for aromatherapy (diffusing) and topically (bug bites and rashes, anxiety and sleep).  But I had stuffed the empty capsules away, completely replacing them with pill bottles, because "doctors know best."  I upped my prozac (psychiatrists suggestion after seeing how distraught and BLAH I've become these past few months) and started taking klonopin on a regular basis. The docs gave me a running script of demerol and lortab for the stone pain and sleeping pills because of my anxiety and depression over "MS."  I have been loaded for months.

Today for some reason; honestly- nothing out of the blue happened- nothing remarkable... I just clicked out of it.  And I'm done.  I'm standing up, getting out of bed and putting on my boxing gloves.  And its starting with the detox of meds and the intake of my oils.

No worries; allllll detoxing is happening with my doctors watching my every move.  My amazing PCP calls daily to ask how I'm doing...  today I told him, "I don't want to take anything anymore.  I want to look into natural routes."  And he said "awesome."  (Dr. Barringer- for local peeps- he's amazing).

So today I climbed through boxes in the garage, and unpacked my arsenal of capsules, droppers, and carrier oils and got to work.

I threw out all the crap in my pantry;  aside from some s'mores stuff for the kids :).

I said out loud to myself, "This is MY body.  MY BODY.  And I want it back."

Friends;  I will still be on many of the meds that my body has grown dependent on for the past few months.  It's not an overnight fix.  None of this is.  But its a start.  And I have a goal.  I have a will; a strong one- and it's finally shown up to fight.

THANK YOU JESUS!

I will continue to update my journey...  the phasing out of medication and inclusion of oils.  Not the specialists idea of what I should do, but to hell with that.  TO HELL.  I am done.

Anyways, I'll be documenting my  internal oil usage on here to hold myself accountable and to show you that I'm not just talking the talk, but truly, walking the walk.

Prayers would be so greatly appreciated.

Prayers have BEEN appreciated.  Someone, somewhere said a prayer to snap me out of it... and today, that happened.

Thank you friends.

Thank you LORD!


Here I go!

Oils used today:
(1 drop each for immune support & liver function)- oregano, thieves, fennel

(1 drop each for tummy/digestive issues)- digize, ginger, cinnamon

(1 drop each for energy/brain power/functioning lol)-  lemon, lavender, peppermint, slique, frank and a shot of Nxinga red.

(1 drop each for kidney function)- juniper, lemon, chamomile


And THAT folks... is how I'm doin' this.  My body loves me already! :D

(seriously- I feel better- more upbeat, more energy, happier than I have in months).

God bless this new journey and these oils. 

XOXO-
Ash ;)

Tuesday, June 17, 2014

I (HAD) a Dream! (and a giant pile of mashed up thoughts)

I had my horrid MRI's on Friday.  One of my neck and one of my back.  I knew they were two different body parts; had no clue they were two different scans.  One hour of of awfulness.  But whatever.  It's done, for now, thank God.

That same day, we moved from our little condo that's been home since the day we rolled into the sunshine state, and into a house in the south side of town. 

We had angels here- everywhere- because seriously, I have no idea how we all survived that day.  

My parents took the kids, Ryan and his parents moved everything, and cleaned like mad people until midnight.  I did what I could (which wasn't a whole lot.  And honestly, most of my weakness was mental; not physical).

The day before we moved (Thursday), I visited my psychiatrist.  Y'all know I have one, right?  I do.  He's great.  He keeps it real.  And I can flood his office with the biggest piles of stress and tears and not have to worry about picking anything up.  He absorbs it, takes it in and lets me just be.  I normally see him on six week intervals to do a "med check"- basically an in and out appointment about how I'm doing on my meds.  Seeing as how I've been on prozac for 6 years, almost every med check is the same: "Yes, I take my medication as prescribed.  Yes it is working.  Yes I am taking care of myself." I have anxiety and depression, and yeah the questions and being on meds are a bit embarrassing, but I'm owning it. If you're judging me right now that's on you.

Anyways, I dumped out the words "multiple sclerosis."  He picked them up.  I left feeling hopeful, relieved, vindicated in a way.  Most of my cry sesh was about how weak I feel as a person; specifically as a mom.  How I'm not worthy of being a mom because I can't physically keep up with my kids half the time and the other half of the time my mind is racing with catastrophic thoughts. (example:  Stella has a wound on her chin from mothers day; it's still red and raw...  I've now convinced myself she has some kind of rare blood clotting disease.  It's my psychiatrist and my husband who talk me down from these places.)  To sum it up, it was an ugly, good cry and I needed it so badly.  I needed to hear from someone OUTSIDE my circle to say "THIS is okay.  YOU are okay.  YOU are allowed to be mad.  YOU are allowed to be upset and scared, anxious and angry.  And ALL of what you're feeling is valid." 

Honestly by Friday (MRI time) I was full of that peace again... my merciful God, prayers & the good people surrounding me are what's holding everything together. 

Over the weekend I felt crappy (eh, what's new?) But we did normal "stuff."  We went to a concert and I screamed and clapped, sang and laughed.  The normalcy was so, so sweet.

Sunday, Ryan's parents left and for one reason or another I had a mini breakdown.  My sister was here and we had started talking about those two stupid letters again.  MS.  I realized some of my troops were leaving and I was scared.  I need all the peeps I can get!  Especially the ones who love my kids and I, and would literally do just about anything for us.  It was a sad day to see them go.  My kids cried, I cried... tear city. 

Monday, I was feeling really good.  Like, really, really good.  I ran errands with the kids all morning, dealt with my insane two year and unpacked, cleaned, etc.  Maeve has ballet camp this week so it's been a blessing to have her out of the house and doing something she loves.  (Not that Maeve's the hard one... now if I could get STELLA into some kind of class, we'd be cookin' with peanut oil :)  The kids and I took advantage of our sweet backyard slab of concrete.  Hellooooo chalk & bubbles!    Around 2, I declared nap time on the entire house.  I sang that song from the Disney channel, "It's nap time now, its time to rest now, you'll feel a lot better once you close your eyes now... "  The kids hate it.  HAHA.  Because if Mickey and Minnie are telling you its nap time, my gosh, its nap time. They obliged and fell asleep;  I had two options- sleep or sleep. 

I chose sleep.  (tip:  When allowed, ALWAYS choose sleep during nap)  Rosie slept beside me and I sunk into bed, feeling seriously great.  I had had a productive morning; I DROVE to target, and spent some good quality time with my kids.  Seems simple, like, "duh Ashley, I do that stuff every day."-  but its more than I've done in a long time.

Part two of this crazy story:  THE NAP

During my Monday afternoon nap, I had a dream and I won't ever forget it.  It's one of those that when I woke up, I immediately reached for my journal and jotted every word down.  I didn't want to forget a single detail.  So without further ado, here is the dream. ;)- straight out of my journal, word for word- like, literally looking at my journal and typing- forgive me if its awful.

"It started out in the mall and I think it was Westwood.  I had on roller skates.   Every time I stood up, I'd fall.  I couldn't get my skates going.  Someone offered to help me to my car, and I finally got there.  Remember feeling so relieved.  Then I had to take family pictures of someone. (don't remember the family?  Someone from Michigan I think.)  I got out of my car, and had the skates on again.  Fell down immediately.  It took forever to get to the front step.  When I got there, I was crazy tired and confused and embarrassed about falling down.  Remember thinking there's no way I'm going to get through this photo session.  A lady answered the door and I pulled it all together.  But I kept asking to use the bathroom because I didn't want her to know I was falling or tired. (or something??!)  Every time I went into the bathroom I fell down again.  And I wanted to call Ryan to tell him to come get me.  There was no way I could take pictures.  Eventually lady left and then I was on a gravel road with grandma.  It was impossible to stand up and skate at all.  There were rocks and potholes.  Grandma was leaping from rock to rock (HAH!) and telling me I needed to come with her.  Every time I stood up my skates caught on a pothole or rock and I'd fall back down.  Remember watching her literally leaping over these giant potholes.  Next thing I remember clearly, is being in high school- at Western.  I skated into a class and fell on my butt as soon as I got through the door.  I have no idea who the people were but I know I didn't like them.  They laughed and I kept trying to convince them I did this on purpose- the skating and falling.  They didn't believe me and made fun of me.  I didn't want to fall again so I crawled out of the class room and sat down.  Now I'm in front of the gym- where I used to have gymnastics practice in high school.  I had my legs straight out in front of me, skates were on.  Legs felt heavy.  Ang came up to me and I was so thankful to see her.  I asked her if she could help me find my dad.  She was busy and she said she had to study, but she thought she could get back in time.  So she heaved me up.  I was way too heavy for her to carry.  We both fell down over and over.  We were trying to get to the parking lot (apparently my dad was there?).  She couldn't carry me, just had me lean on her.  I remember saying to her, "You're like a mule!"  She promised me she'd get me out there and to my dad.  Told me to be patient.  After what felt like a million falls she had me out the door.  We were outside and looking for my dad.  I kept saying how sorry I was.  How heavy I was.  She didn't care.   She just kept dragging me.  Finally we saw my dad.  I was watching myself now from somewhere- (no clue)- but I passed out in my dad's arms.  He completely picked me up and he said something like "I've got you and we're going to the hospital.  You're fine now."  And from this distant place where I was watching myself, I remember feeling completely relieved.  I had made it I guess?  And then I woke up."

I woke up (real life talking now, no more journal ;) and felt around for my phone.  There was a message from Ryan, "Did you hear anything from your doctor yet?"  I scanned through my missed calls and voice mails.  There was indeed one from my neuro.  Having just dreamed that very poignant, crazy dream, I started to feel panicky- like "HOLY MOLY.  The Lord just gave me that dream to use as a guiding point for whatever is about to happen."

I called my neuro and they transferred me to the nurse.  She's incredibly sweet.  My next neurology appointment was set up for July 3rd.  So when she asked me if I could come in tomorrow (Tuesday- today) I literally sunk.  My shoulders, neck, head, everything sunk.   I asked her what it was and she said the doc would talk with me tomorrow but, and I quote, "Do not lose sleep over it."

HA!  To say Monday night was hard, is an understatement.  I didn't sleep- like at all.  I stayed up, thinking of that weird dream, wondering if it was foreshadowing what was about to go down.  I watched infomercials until my brain mushed itself into some state of half sleep.

This morning Ryan stayed home from work (he's  about 3 days in the negative with work....) this is stressing me out huuuuuuuuge.  I mean if it weren't for young living..... I can't- no won't-  even go there.  Let's just say it'd be really, really bad.

My appointment was at 11 and I sat in Dr. Wei's office ready for anything.  Really.  I was prepared for the "C" word, ALS,  MS, whatever.  I just knew something was coming.

He came in and said he had good and bad news.  (blah.... that's the worst saying ever)

The good news:  My scans weren't bad at all!  A little bit of white spots in my cervical spine area but still not enough to say "THIS IS MS." He used the word, "unremarkable" which I guess is pretty good in med term.  :)  The bad news:  It wasn't enough to rule IN or rule OUT MS. 

I had decisions to make.

Dr. Wei wanted to give me two options.  A- lumbar puncture and nerve testing on my hips and butt.  Or, B- leave the way I came in.

I chose B.  Immediately.  And as soon as I did, he said "Ahhhh good choice.  As your doctor I want  to give you all of your options but you are a smart girl.  Good choice.  At this point if it's MS, it's MS.  If it's not, its not.  But nerve testing and lumbar puncture are both invasive and I would treat you the same, regardless of the results.  You have an acute bladder and kidney issue.  Is it caused by MS?  We don't know.  But focus on fixing this.  We'll deal with the rest as it comes."

I think I felt 500 pounds lifted off.  I didn't walk out the door, I flew.  No, it wasn't exactly what I wanted to hear (I wanted to hear, "NO MS!  You're perfect!") but it was enough.

My next appointment was with my urologist.  This is where things kind of took a downward turn; the line snagged a bit here.  I have another bad infection.  They can't do the urodynamics which will apparently tell us a lot about my bladder until I'm infection free for at least two weeks.  And honestly?  I have no idea when that will ever happen.  They put me on  a strong antibiotic which I'm not too pleased about.  I'm completely torn when it comes to antibiotics and my infections.   I told my doctor I didn't want to be on antibiotics; that my body was becoming immune to them.  He agreed that this wasn't ideal; that over my life I've been on far, far too many antibiotics.  At the same time, if I'm not on antibiotics (with this particular infection, which apparently is "really nasty"-his words...) I could become septic in a day.  So what does one do?  Take the antibiotics of course.  And around and around we go.  It's the most sickening carousel.  I want off... like yesterday.

Antibiotics-infection-antibiotics-infection-antibiotics-infection.     

If my left kidney isn't feeling tons better by tomorrow, I'll need an ultrasound to rule out hydronephrosis.  Pray the antibiotics kick in. 

An ultrasound is nothing.  I know that.  But I am losing strength.  My fight is pretty weak right now.  When you're told the same thing over and over again, it's hard to have faith and hope.  I told my doctor I'd start the antibiotics (and I did) and I smiled like a puppet, saying "next week we should have this cleared up and we'll be able to do the urodynamics."  On the inside, it's more like this:  Screw this.  Screw that.  I don't believe you.  This will never end.  I am a lost cause, a lame horse.  I'm tired.  I'm over all of this.  I don't care about antibiotics or urodynamics.  I don't ever want to step foot in here again.  I don't ever want to hear the word KIDNEY OR BLADDER again. I want my life back.  I want to be a good mother.  I want to pee on my own.  I want to be consistent and dependable; not bailing every day because my bladder is on fire.  

Of course none of that was said.  And as of now, I'm popping pills like a good patient (all in the name of not becoming septic, which I suppose is an important thing ;)  Hey- I am ALL for natural healing, oils, acupuncture, etc. and I continue to use all of those as aids in this journey.  But I also know to keep it real- this mama cannot risk becoming sicker.  I've hurt my kids enough.  My family has had just about all they can take.  As much as meds suck, I need them right now.  And that's that. 

Future plans are urodynamics (HA!  I'll believe it when I get them done...), another cystoscopy and a lithotripsy to break up the lovely 9mm stone I've got hanging out in my left kidney. 

In NON kidney/bladder news, my family is awesome.  Like, you should be jealous because they are that awesome.  We got fishing poles for fathers day and as a family, we're going to learn how to fish these here waters.  :)  We're all excited to start that quest!

My trip to Spokane is coming up (end of July)... it looms over me daily, that I could be sick and something freak could happen and I might not make it to the trip that I've worked so hard for.  But I'm trying like mad to remain positive with that whole situation.

VBS is next week (YAY YAY YAY). 

I love our new home and neighborhood.  Both feel like comfy sleeping bags :)  We fit perfectly.

Lastly, (and I want to phrase this nicely- wish I could say it in person, because things come across differently online)... but anyways, I've been swamped with messages about "healing herbs..... healing diets.... healing this, healing that, etc. I know, I KNOW  each and every one of these messages is out of love.  And that makes my heart swell :D  But at the same time, the overdose of information is causing my brain to feel like its on some awful carnival ride.  I can't put it all together right now.  As much as I want to read and talk about all of these solutions, I just can't at the moment.  I'm overwhelmed.  Right now, I'm focusing on working with my doctors, my family and ultimately the great physician above.  I truly am interested in what everyone has sent my way.  At the same time, I can't process it all.

The prayers though?  Oh my gosh.  The thoughts and prayers.  Never more have  I felt the holy spirit.  I know He's here, working in me, fighting for me, and working in people around me.  It's incredible; and makes me think of this poem.  I'm sure you've heard it, but its one of my favorites.  So read it :)  Then kiss your babies & loved ones, thank them for all they do.  And go give yourself a bubble bath or a piece of chocolate.  Because you rock too.  :)






  


xoxo, Ash


Wednesday, June 11, 2014

Stripping the Fences & a Shot of Ginger

First:  Wow- thank you so much for the giant facebook hug today.  Your prayers mean everything.  Ryan had texts and calls as well; I didn't mean to cause such a stir!  But I suppose the picture I posted warranted worry... at the same time, please don't waste anymore worry on me. 

Second, a recap:

I had been posting throughout the week about today's neuro appointment.  Actually I think I've been posting about it since it was scheduled a few weeks ago.

I've been diligently keeping my "MS Diary."   Ryan and I have had a thousand conversations about all of the "what if's" that today could hold.

Last night I was a wreck.  I couldn't be around my kids.  As I waited for Ryan to get home, I bounced Rosie on my hip; wanting to get my hands off her; leave and run- without the sensation of actually leaving.  Does that even make sense?  Ha.  My brain is fried.

I went and got a pedicure and a smoothie.  I grocery shopped.  I sat in my driveway.  I did anything I could to not get home until my kids were in bed.

This morning I woke up with peace.  I really did.  And I don't know why I find it so odd; I worship the Prince of Peace.  

I got super lost trying to find the office but my heart remained steady, my head focused.  Today was a day for answers.  It was time to rip the band aid off and see the wound.

I love my neurologist.  I just met him today; but he's a kind soul.  He's compassionate and his bedside manor is like a cup of hot coffee; super warm and inviting.

We started with talking; he took notes, told me "I am so sorry" when I relayed the catheter stories.  How simple those words- but to hear them from a doctor, my doctor, meant a ton.  He cares about me.  He wants to fix this.  He's empathetic.  

After talking about my life over the past 3 years (this is going back from my first kidney and bladder issue- right after Stella was born), he did an exam.  I failed two parts of it.  The peripheral vision part and the toe test.  I had no clue what either was, but my report literally says "suspicious toes." (HA!)  After getting home I looked up what toes had to do with MS and found some good info here (the Babinski reflex).

Then he pulled up my brain scan (the MRI I had done a few weeks ago.. the one I had gotten a "clear" on).  He walked me through it; showing me the different parts of the brain and then he stopped right in the center.  He leaned closer to his computer and zoomed in.   And I kind of just knew then.

I think I asked, "Is something wrong?"  And he said there were a few suspicious spots and pointed them out to me. 

I didn't cry.  I didn't hyperventilate like I did at the Mayo clinic when they told me I would have to learn to catheterize myself.

I asked, "What does that mean?"  And he explained with the neurogenic bladder, the "suspicious" spots and toes and my vision loss he was going to call this MS.  I watched him type each letter into the computer.

M-U-L-T-I-P-L-E   S-C-L-E-R-O-S-I-S.  There it was.  No longer whispered, or suggested, but there, bold and recorded.  It's presence was heavy, like each letter was a hit.

Here's where things get tricky.  I asked him, "So, I have MS?"  And he said, "that's how I am going to treat you.  Do you have MS?  It's looking like that.  But your tests on Friday could blow us all out of the water and prove everything wrong.  I am going to write Multiple Sclerosis as your diagnosis but before you leave I want you to know, this is not you.  This is the start of an investigation and I'm rooting for you."

Checking out, I handed my papers over to the scheduling lady who ran through the tests I'd be getting, my next appointment, etc.  Her eyes were so sad and I think she said "I'm sorry 3000 times."    I know she meant well; her heart was sweet.  But eventually I said, "I'm okay!  I know, it sucks.  But I think I'll be okay." 

And then I walked out, paper in hand.  Diagnosis:  Multiple Sclerosis.  Those black printed letters, stamped on my white discharge papers.  All day I've felt like I needed to hold it.  Physically hold the paper.  Weird, I know. 

My first stop was the parking lot and a twenty minute crying session, all the while holding that paper.  I'm an instagramaholic; so as soon as I took a picture of the paper- this sacred paper- I was flooded with your words.  I couldn't keep up with the comments and messages.  Prayers. Love. Hope. Strength.  Mom.  Jesus.  Our God.    Those were the words that in between sobs, went straight to my heart and have stayed there and WILL stay there...

Jesus is so alive and His mercies were flowing this morning.  Your prayers, He heard them and I was given grace and strength.  Enough to call Ryan without crying and to drive to my parents house without having a panic attack.  It wasn't until I saw my mom and dad, handed over the paper that I allowed myself to dig into the hurt.  I had my parents with me;  we cried and I stripped the fences.  I let it all come out;  every ugly thought, feeling- it was poured out onto their kitchen floor. 

You see, I've stripped the fences before.  Almost seven years ago my dad physically picked me off the floor to bring me into the emergency room because I was so stricken with panic and depression I literally couldn't move.  Almost seven years ago, I had to break.  I had to say words that made me feel ugly and worthless.  I had to admit thoughts that haunted every cell in my body.  Seven years ago my husband, mom and dad surrounded me in the ER and made a pact that we would get through this.  I called bull on them.  Never in a million years, did I think I could or would get through that.  For a year Ryan drove me to the anxiety clinic at the University of Michigan every Monday and Wednesday night.  While I went to group therapy, talked with my psychiatrist and learned coping skills, he sat in the car eating Subway with our sleeping newborn tucked into the back seat.  Seven years ago I was broken.  My white fences were stripped and I was vulnerable; terrified.

As I leaned on my mom this morning, I told her over and over, "I'm too tired.  I'm just too tired to do this.  I don't even care.  I don't want to do this."

"Ashley, you have to care.  You have four kids at home.  You care."  And then I said something snarky like, "Just let me cry and be mad mom!"  (my poor mother).  She went out to the patio and cried alone.

Their house is quiet now, as we've all grown and left it.  It makes for a  really nice place to get your head together.  This morning it was like five different boxes of puzzles were dumped into my brain;  each needing to be sorted and pieced appropriately.  I'm thankful for the silence and time at my parents.         

I thought back to the birth of Maeve; my dive into depression.  My first experience with admitting I am less than.  I thought back to when I accepted that; that I, Ashley McKenney, have anxiety and depression and I have weaknesses.  Huge ones.   Ugly, gaping ones that like to taint my view on how I think my life should look.  My fences aren't white.  They never were.   And that's okay. 

Let me say it again:  that's OKAY.

My mom came back in and declared war on MS.  I agreed.

This is ugly.  This hurts.  This is hard and I am tired.  And I don't want to see my life through the haze of MS. 

But that's life.  It's my life.  And it's worth everything I have to bare it all, come clean, and allow healing.

My dad, mom and I hovered around the computer looking up everything about MS.  Diets, doctors, treatments, etc.  We came across  the benefit of ginger.  HERE   

One of the scariest thoughts of MS are the medications.  I don't want to ever take a single one... I've looked them up; they sound awful and I'm not sure how its legal to put that chemical crap in your body.

After a few minutes my mom said "OFF to Smoothie Fresh!  We're doing shots of ginger today!" 

We toasted to imperfections and the kill off of pharmaceuticals. 

The ginger burned, all the way down.  It was hot and I felt it hit my stomach like fire.  But I felt it and that in itself gave me something to work with.

I drove home feeling relieved.  It was out.  The words "multiple sclerosis" had been printed and I'm still standing.  I'm still feeling.  I'm here.

At home, I sat in my bathroom for a good thirty minutes, crying along with the sound of the shower.  There's no getting around that this is depressing; that I'm scared, upset.  That's part of this thing.  Allowing yourself to feel that way, accepting what is (or isn't) and moving on. 

Today I sit here in a familiar spot, rotting boards, paint flicking off my "perfect" fence.  This time around I have four kids who love and want me, need me.  If that's not motivation I'm not sure what is.  I also have the brightest hope;  I've been here before.  I've been at the end of my rope, on the floor, and broken.  And I've gotten back up.

I'll get back up from this. 

Right now I'm thankful that its almost time for bed.  I'm tired. 

I'm thankful for a husband who doesn't care about having ugly fences.

I'm thankful for parents whose arms will always be home to me.

I'm thankful for those four sets of eyes that can and do bring me to my knees.

I'm thankful for your thoughts and prayers.

Ultimately, I'm thankful to have my God that sent His son to die, so that I can live, love, feel love, accept it and have hope.  
 

In the days to come I have a cervical and thoracic MRI along with another MRI of my brain  (this time with contrast).  A spinal tap comes after those.  (MRI is on Friday).  We're moving into our new house this weekend.  I'm going to a Counting Crows concert on Saturday.  Rosie's snuggled up to my hip.  My other three loves are having a "movie party" with their grandparents.  I'm looking through texts from today and came across a simple one from my husband, "I love you.  Forever, in everything."  My bed is warm.  My left foot is numb but my heart is pounding with a vengeance;  each swish and pump, "hope, love, faith, hope, love, faith."

What more could I ask for?  God is good.  Praise be to Him for hope and strength.   

xoxo-  Ash ;)