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


1 comment:

Misty Harp said...

It's a beautiful thing to read your writings...because they are raw and real and share your heart's most vulnerable thoughts. I love that you are weak but strong because of Jesus, that you are broken but whole because of him, that His promise to never leave you is your peace. In the midst of the pain and the hurt and the confusion, you rest in knowing He is sovereign, and I am beyond honored to be your friend. <3