But you don't look sick (1st blog post June 26, 2019)

Please as you read this blog understand I do not want your sympathy, just your reading comprehension skills and your open mind as I tell you the journey I’m on....

“But you don’t look sick,” my most favorite sentence.  “I am sick,” my least favorite sentence.  I have NeuroMyelitisOptica (NMO), I’m sure you all have heard about it, right?  Just in case you haven’t I’ll go ahead and explain it with non-medical skills (although I do faithfully watch Grey's Anatomy and Chicago Med).  I usually says it is Multiple Sclerosis (MS) evil cousin.  It actually mimics MS so much it causes many patients to be misdiagnosed in the beginning.  It actually happened to me but I’ll save that story for a later date. 

I’m sure at this point if you are still with me you are thinking, “I’ve never heard of NMO, and may even be considering checking with “the Google” on this disease.  NMO is an auto-immune disease that causes lesions/inflammation on the optic nerve (Optic Neuritis), and spinal cord (Myelitis).  Mine started with my eye, my left eye, it was not fun.

Four years ago my oldest daughter and I were grocery shopping and I thought the grocery store looked foggy/smokey.  When I asked her if she thought it did, she gave me one of those looks like I’d lost my mind.  By the next day my eye was much worse and it really hurt.  Like I said, I am not medical but I have never missed “Grey’s” or “ER” back in the day so I figured my TV medical education could help me to diagnose this as a side effect of Zyrtec.  I know this is hard to believe after reading my medical qualifications but I WAS WRONG.  This was just the beginning of a very long list of tests, doctors appointments and diagnosis, but I’ll save some of that for later.  However, I will give you a little spoiler and tell you I have an awesome team of doctors and an amazing support system.  My neurologist is wonderful and is constantly researching not to mention he answers every text I send (I’m surprised he hasn’t changed his number).  Also, thanks to NMO my kid have become more creative by developing new games such as, “what does that sign say, mom?” or “what color do you think that is, mom?”

Unfortunately, NMO is a disease that tries to crack you.  It takes your eyes, it takes your legs, it takes your bladder, it keeps you in constant pain, it wears you out, it makes you depressed and most of all it tries to make you a different person.  I refuse to let NMO beat me.  No wheelchairs for me, no please pity me thoughts, no I can’t do this anymore and no forgetting it could always be worse.  I know I am blessed and this is just my bump in the road, my story to tell. 

I will say the hardest part for me lately has been depression.  Now I know I seem like a bright ray of sunshine but inside I’m not.  My disease is progressing and the latest progression has bothered me the most, but more so for my family than for me.  I’m still awaiting some test results but in the meantime I’ll write.  My husband (who happens to be very supportive) suggested this blog thinking it would help with my depression and maybe help people understand what NMO looks like for me.  I’m sure by now I’ve made it as clear as mud. 

Tune in to future writings to find out things like, “why a seagull made me duck under the dashboard,” or “why I hate interstate construction walls,” or, most importantly, “why a dollar store mirror has become my best friend”.  I would also love to tell you about my treatments, my fun side effects and what may be any new hope on the horizon. 

I would like to end my first stab at telling my story by saying, “Thank you” for reading and being an avenue for me to fight this evil monster, NMO.

The Local Seeker

"Kids! Hurry up and get dressed, the pills will be gone by the time we get there!"  That's right, it's the "Black Friday" of the pharmacy world.

I know most people take some type of prescription medicine, allergy medicine, heartburn medicine etc.  I take a lot of medicine as you can imagine.  It's a lot of medicine from a couple different doctors and it goes to a couple different pharmacies.  Sometimes I spend the better part of a day driving around picking up and dropping off prescriptions.  No one can say I don't know how to have a good time!

Let me tell you about my awesome Friday morning.  I got up this morning with a smile on my face.  This was supposed to be my "morning off."  My kids have been in a tennis tournament and helped with a pro tournament this week so we have spent approximately 20 hours at the courts in 3 days.  Anyway, I was all settled in my recliner with my favorite blanket ready to catch up on my favorite DVR'd reality shows (the Busby's went on a cruise this week and it was very important to me that I went too).  I had just hit play when my phone rang, "Mrs. Aldridge, the medicine you were supposed to pick up today is out of stock.  We have to order it and won't have it until Monday."  Ummm....nope, that won't work.  I just took my last pill 2 minutes ago thinking I would have this filled today.  So I began my monthly phone calls to all the pharmacies to see who could fill my prescription today.  Yes, that's correct, I am a "seeker" the "Local Seeker."

Luckily, after 3 calls I found a pharmacy with the ability to fill my prescription today.  This wasn't the first time I had done this and luckily this time I wasn't a day early trying to get the prescription.  It was exactly 30 days since the last time it was filled.  I will never make that mistake again.  Wow!  Talk about getting a look! I went to the pharmacy 1 day early once a while ago and I could still pick that pharmacist out of a line up (and I have 1 bad eye.)  The way he looked at me when he said, "we can't fill that until tomorrow," made me think he was secretly snapping my picture to send in some mass faxing system with a note that said, "DO NOT FILL PRESCRIPTIONS FOR THIS LADY, SHE IS A SUPER SEEKER!" I was quick to explain I wasn't out of the medicine yet but I was there for Tylenol and just thought I would get it filled.  I actually cried that day leaving the pharmacy, I was so ashamed.  Quite frankly, that's not fair and it is completely ridiculous to treat anyone like that!

Anyway, and most importantly I found the medicine today.  So, I loaded up the kids in my 2012 mini vanesque SUV, bluetoothed some Vanilla Ice and headed down the road.  You may be thinking, "what's the big deal, just transfer it to another pharmacy that has it and pick it up?"  Unfortunately, that's not how it works.  In order to get several of the prescriptions I need the actual "doctor signed" prescription in hand.  And, here's the kicker, this particular prescription was, as you know, at another pharmacy.  Not just another pharmacy, but another pharmacy on the opposite side of town.  So, as I am sure you are aware, time is of the essence.  I hate this shuffle, the "run all over town to find my pills" shuffle.  It is Friday and several local pharmacies aren't open on the weekend.  Plus, we had lost at least 10 minutes for Barrett to create the perfect messy bun.  It's a "messy" bun, why does that take more than 10 seconds?  We had to go!  There was absolutely no time for beauty,  I don't think she understood I was about to get ugly if I missed my window of opportunity.

Apparently the music inspired me because I made it to the pharmacy in good time.  I was excited until I had to wait for a car to move so I could get to the drive thru window.  I was sure that searching for a place to park and walking in and walking back out again was a complete waste of time.  The drive thru was the only way to go.  I finally got to the window and got my prescription and back on the road we went.  I was nervous.  I just knew it was going to be gone before we got there.  I promise it has happened before.

So for anyone who doesn't know I live in the "Opioid Capital of the World" that might be a little off but close enough.  I should probably tell you that to my knowledge no one has ever abused this particular medicine.  I'm not sure why they would either, or any pill for that matter.  I hate that feeling.  But, I am a light weight, I can practically sniff a beer and I have a buzz these days (I'm not going to lie, I do miss college sometimes five dollar pitchers and a good time was had by all.)  However; somewhere, somehow, someone has abused it.  Unfortunately, days like today I pay the price.

Before someone shouts, "quit picking on addicts!  It's an illness!" I assure you I am not picking on anyone and I am ill as well.  You know what else?  This medicine actually helps me.  Unlike someone who has become addicted, I can't go to a clinic for help.  As a matter of fact the disease this medication helps me with is trigeminal neuralgia (something that was a 'bonus prize' to my NMO).  Trigeminal neuralgia hurts some people so much that they commit suicide.  Some actually call this disease the "suicide disease."  I am so fortunate to have never experienced it to that extent.  But not fortunate enough that it doesn't hurt or I could just ignore it.

This super fun (yes that is sarcastic) game of "find the pills" I have had to do one too many times.  My favorite is calling around to find my medicine.  I have been told, "Ma'am we can't tell you that over the phone." Or, "no we don't" before I even tell them the dosage.  However, my all time favorite and most fun response so far has been, "We can't release that information over the phone, people have threatened to shoot us over medicine before."  Yep, that's me, "Shoot 'em up Julie," known to bust a cap in you for a pill.

As my kids and I barreled down the interstate (at a safe but steady speed) to the opposite end of town all I could think was that my medicine was surely gone by now and we are going to end up chasing pills all day.  Not only does that stink for me but for my kids as well.  Then the worst scenario of all hit me...I would be in the car all day with the kids!  I had promised them a pool day with their friends and it was beautiful outside.  Oh the horror!

Thanks to lots of praying I made it!  As I approached the counter to drop off the prescription I reminded myself to smile and put away my RBF.  I told the lady at the counter I had called earlier and needed to have this prescription filled.  She looked at the prescription, nervously smiled and said, "I think we may be out of that but let me check first."  Wait! What? Sh**!

Guess what? She was wrong they had just enough to fill it today.  I looked around for a camera.  I just knew I was being punked.  She told me 20 minutes and it would be ready.  I kid you not, 22 minutes later it was done and off to the pool we went.  I felt as good as I did on the Black Friday when I paid the lady in the front of the line at Toys R Us to get Jack an Xbox 360 (thanks Mary Beth, you are genius.)

Moral of the story:  it should not be this hard for a person with an illness to get medicine.  It's not fair.  It's not right.  I was embarrassed and I was ashamed because I really feel like pharmacists and the pharmacy staff members truly think I am "seeking." I'm not.  I'm not even taking this medicine to be cured.  I can't be cured, I have accepted that.  I took a major step forward when I accepted this as my new "best."  But days like today push me back a step.  I know I couldn't be the only who feels like this or who goes through all this nonsense just to maintain their "best."  Unfortunately, I'm pretty sure it's only going to get worse.  I may end up being the "Regional Seeker" soon enough.

Where is Candyland?

You know that feeling when your body says, "Stop moving, lay down, put your feet up, relax, and find a TV show you like," so that is what you do.  But first you put on your most comfortable pj's and grab your favorite snack, and then, YOU WAKE UP!!!  I mean who lives like that?  If you do why are your reading this?  Go! Enjoy your paradise and please invite me over.

I know everyone is tired by the time evening rolls around, especially parents.  The problem for me is I'm tired like that by noon, sometimes 2 pm on a good day.  I have always said the greatest gift God could ever give me was making me a mom.  Our kids are great, they are kind, caring, smart, talented and full of personality.  But lets be real they are also demanding, messy, smart mouthed and full of energy.

Last weekend, I was watching Wimbledon.  I was so excited because Serena (I will just call her Serena because I figure we'd be BFF if we ever really met) was going for her 24th major title, 24!!!!  I just want to get the laundry done?!?

Unfortunately, I've had to stop doing lot of things I love because this stupid disease has wiped me out.  One of those things is tennis.  I love tennis, and believe it or not I was pretty darn good, or so my mom tells me anyway.  I even played in college.  Luckily, my kids play and are getting pretty good at it.  I love that they love it but I hate that I can't really play with them anymore.  I can feed them tennis balls and offer advice (which they love), but it's not the same.  I'll be honest, they have watched old videos of me hitting and my kids have pointed out that taking advice from someone in a Bart Simpson "Eat my shorts" t-shirt is a little sketchy.  But I will tell you they will never beat me...EVER!  I will walk off the the court if it happens to get close to that point with an excuse like, "I have to get my click list so you can eat."  But, I am tired and can't move so they should beat me, maybe I'll just blame NMO.

I recently had a doctors appointment and we discussed how tired I am.  Of course, "there is a drug for that."  So I am now taking Ritalin.  Hopefully, it will work.  I know it definitely gives me an energy burst because after I take it I do not shut up!  I get on my own nerves.  I feel like I need to put a sticker on my shirt that says, "Beware just took medicine and could make your ears bleed!"  The other bad part about this is that I don't really have a filter.  I'm going to tell you the truth so don't ask me anything you don't truly want to know my opinion about.  Things like, "isn't my child adorable?" or "do I look too old to wear this?" are completely a bad idea if you don't want my real answer.  Now, if your child just signed a modeling contract or you recently got invited to a sorority party because someone thought you were a possible rush candidate then you are safe, otherwise forget it.

Back to being tired, scratch that, completely exhausted.  I truly look forward to getting home, or quitting time (I work for my children) and going home, showering and putting on my pj's.  Honestly, it is amazing!  Everyone in my house knows that once I get my pj's on and my bra off (seriously, it is the best) don't ask me to go outside the house, I am not doing it.  As amazing as that sounds it worries me too.  Like I have said before, I'm not worried for myself, I'm worried for my family.  So it's an evil cycle... I'm tired, I worry about disease progression then I give in to being tired and I get comfortable, so I worry about my family.

As much as I love to sit and put my feet up and increase my medical knowledge by studying "Greys Anatomy and Chicago Med" it gets quiet in my head.  A quiet, tired brain allows your mind to obsess and talk to you.  Don't worry it's not telling me to harm myself.  It's telling me things like, "I hope my kids don't think all I do is lay in bed with a headache and a heating pad on my neck."  Or, "poor Todd he works so hard all day to provide for us, I know he is hungry but I'm exhausted.  I wonder if he'd be OK with Outback delivery?"

I am honest with my kids and will answer any question they have about about my disease but I try not to tell them about all my hurts, but Todd knows every ache and pain.  I've written it before and you will read it time and time again but he is my rock, my happy place, my safe place.  You know that stupid girl in high school who thinks their boyfriend is so fantastic and looks at him with hearts in her eyes? That is me when I look at him.  We went on our first date when I was 20 and I really did fall in love with him that night.  Like a lot of other young couples, we just couldn't get it right and eventually went our separate ways, met others, had amazing kids and then God led us back together.  Nope, not an affair, this isn't a soap opera.  I very much believe in God.  I know He has given me lots of blessings but my kids, Todd, and my parents are my greatest blessings!

Back to Todd knowing all my aches and pains.  I feel like it hurts him emotionally as much as it hurts me physically.  I have asked him more than once if he wants out?  I tell him I wouldn't blame him he doesn't deserve this.  I know I don't deserve him.  He rubs my feet, listens to me obsess,  and looks for ways to beat NMO.  He actually researches.  He looks for new medications, new therapies, new treatments, anything and everything that could help me. This sounds so childish but when he is gone sometimes I panic inside.  He is my calm.  I know watching me laying in bed being completely wiped out by 5PM is not what he thought I would be as a wife.

My tiredness affects my kids too. We have teenagers now and while they don't hang out with us as much anymore, they still see it.  My son, Jack, is exactly like me.  He worries about everything and he also thinks he has to take care of me.  Even though he's playing a video game he still pops his head in my room from time to time and asks if I'm OK or if I need anything.  He is 100% a mommas boy and doesn't go far from me.  If Todd isn't here he makes sure I know he is here and in the next room.

Barrett (Jack's twin) is my loving, tender hearted child.  She takes on a mom role with me.  She comes in my room armed with a "box of fun" and wants to fix my hair and paint my toes.  She puts pillows in her lap and tells me to lay down and brushes and braids my hair while my freshly painted toes dry.

Sophi, my "bonus" child is my teen age step daughter.  By the way, "step" is a stupid title.  I prefer "bonus" as a title.  "Bonus" is a word with no negative connotation and perfectly describes how I feel God blessed me, he gave me a "bonus."  If you are counting that is 3 teenagers! Yikes! Not really though.  Even though they make me insane sometimes, they are great kids!  Sophi is a star basketball player and very competitive.  We actually have a lot in common.  No, I do not think I am a star basketball player (insert eye roll) I just mean we "get" each other.  Sometimes she will come and sit in bed with me and talk for hours.  On a side note, she is also working on getting her MD from Grey's Anatomy too.  We frequently watch old episodes and discuss what we think they should or shouldn't have done.

Then there is my baby, Olivia.  She is 10 now and really not a baby anymore but she still eats up the baby role as often as she can.  I tell everyone she is the "star of her own show" and no truer words have been said.  Her view of my tiredness is a little different than everyone else though.  Instead of worrying about me being so tired I think she enjoys my evening tiredness because I am a very captive audience for her.  I've often said I should have named her, "Mom Watch Me."  I've seen a lot of Olivia shows in the open space of my bedroom.  She definitely makes me laugh and smile.  Right now she is obsessed with UNO.  But here is our issue, I am very competitive so she has to earn her win.  I am not that parent who lets their kids win, I like to win!  Olivia likes to win too.  She gets mad when she doesn't win and then I hear, "that one didn't count" or "it's first one to five."  She is smart too because when I say no more she will say something like, "what else do you have to do?"  She knows I'm not going to say, "I'm tired" or anything to that effect, so we play again, and again, and again, and again.  At least it's not Candyland anymore.  At one point we played it so much I think I had the spaces on the board memorized.  Unfortunately, we lost that game.  I just don't know where it is (insert evil laugh.)

So you see even when I am so tired and I think I am going to drop, thanks to NMO sucking the life out of me, my family finds a way to rally around me.  They make me feel needed and loved from research articles to card games.  And, while I'm still exhausted and laying in bed or kicked up in a recliner I still win, we still win.  NMO will not break me, it will not break us!  Everyday it will continue to try.  I know new obstacles are coming and that evil monster will not go away.  But, thanks to my family, the family I know I don't deserve, we will take whatever it throws at us and we will beat it!

Well Crap, It Sucks

"I'm sorry ma'am we only serve Pepsi products."  "Mom, we are out of toilet paper."  "Sorry but your license is expired."  "It's your turn to chaperone the field trip."  All of those are sentences you don't want to hear.  But, I have to tell you I have recently heard the worst sentence of all, "I think it is time you learn how to cath yourself."

Yep, that's right, I'm in my mid 40's and I can't pee.  I know what you all are thinking, "That Todd Aldridge is one lucky man!"  That was my first thought except it sounded a little different in my head.  My head was saying, "Really?  Poor Todd and my kids." Then I saw my mom, she already accuses me of spending too much time in the bathroom.  I even saw my dads face, my poor dad, the man who once knocked down a row of tampons trying to get one box for me.  Now I have to tell him to ignore the handheld mirror and the measuring cup in the bathroom on vacation.  Of course after that the tears began to flow and they have been flowing off and on for about 2 weeks now.

I am very open with my family so of course I told them slowly but surely and their response was not like my head said it would be.  My favorite response came from my youngest daughter (she's 9).  I had to explain why the bathroom door would be locked and I really needed her not to stick her fingers under the door trying to get my attention.  She had a super inquisitive look on her face and very seriously asked, "Do Catholic people use it?  We are Baptist."  It was the exact response I needed.  I worry about how my NMO affects or will affect my kids everyday.  She was unaffected and unwilling to switch churches.

Last time I told you I've been more depressed lately, this is why.  Let's be honest, NO ONE WANTS TO CATH THEMSELVES, NO ONE!  I can only imagine what my face looked like when the doctor told me because he paused looked at me and said, "you can do it, it's not hard."  Ummm, what?  I stopped midstream of tears and gave him my best RBF and said, "oh, do you do it?"  He just patted me on the back and smiled.

This, this right here is how NMO destroys more than just your body.  This stupid disease can easily humiliate you if you let it.  Because not only was I hearing my "neurogenic bladder" was getting worse but I was hearing it with a paper blanket covering my lap.  Don't worry I didn't take a selfie to post on facebook.  I did however shrink down inside myself.  I felt like a little girl that was hiding in the corner just trying not to be seen.  I was so ashamed.  I was so scared.  Then I became so mad.  I knew I had to get it under control before I saw my family, before I talked to my husband (he won't admit it but he gets just as upset as I do.)  I knew I had to call two people, my rock and my bff- my mom and my person through all of this since day 1- my Brooke.

I texted Todd to let him know I was done at the doctor and would call him soon and I called my mom.  My mom is by far the smartest person I know.  She is a recently retired physician, she can always explain how every test and treatment benefits me and why I may or may not need it.  I just knew she would say something to fix this, she would have some amazing words of wisdom to make it all better.  I told her with my best sniffling voice and waited for her brilliant response.  She took a deep breath and said, "Well crap." Are you kidding me mom?  That was her brilliant response?  However, she listened and she let me cry and unload and get it all out.  She really is my best friend and in that moment she played that role perfectly.  But when I hung up with mom I knew it was time to call another one of my besties, my "in case of emergency" person, my dose of reality person, just in general, my person (see, I know Greys), my Brooke.

I knew the call would be quick and to the point because she was at work.  Her job is my dose of reality.  She is pediatric oncology nurse practitioner.  I told her what was going on and she too took a deep breath and said, "It sucks but you can do it and you have to do it." Put those two responses together and you've got, "Well crap, it sucks," they should write Hallmark cards.  I knew with Brooke the pep talk text would follow and not long after we hung up it did.  It worked.  I gathered myself and headed home.

That evening Todd and I had a heart to heart.  He let me cry and he comforted me and I comforted him.  We refuse to let NMO break us.  I'm not a lovey dove, touchy feely kind of girl but I will tell you he is by far my soul mate and my rock.  As always he pledged to stand beside me and to look for the next great thing that would fix this, fix me.  This is the point where he encouraged my to write because he could definitely see the depression setting in.

I went to one more place for help.  I have an amazing friend from years ago.  She has MS and she told me that this would be life changing and I would be glad I did it.  She has been such a blessing to me throughout this crappy diagnosis.  I am so thankful to have her in my corner.

So.... I did it, I do it and while I still hate, it helps.  So I guess I am stronger than I thought because NMO definitely tried to break me this time.  I'll be honest it almost won.  But almost isn't a win.  I win this time.  Thanks to my amazing support system (believe me there are more).  I looked that evil NMO monster in the eye and told it to SUCK IT!!!