This is real life...

"When life hands you lemons, make lemonade."  That is complete BS!  Who even said that anyway?  Right now I feel like life is throwing lemons at my face and I want to take my tennis racket and knock the juice out of them.  Who decided the best idea is to take the bad and spin it for the good?  Why can't I just be angry for a little while?  Why can't I get it all out?  You know what?  I can.  And, I will.  People tell me all the time I have the best attitude, nope, not today.

So here is my plan (when you write it down you have to do it, right?)
     1.)  I will write my plan ✔.  And, as I write my plan it will be fast and messy.  Maybe, I will press so hard I will break the pencil too.  Maybe, it will missing commas and words, why should I care, I'm not getting a grade?  Although today I feel life has given me a grade.  Life has graded me a "T" for tired, a big fat "T".  I am so tired.  I am tired of calling my doctors and saying, "so sorry to bother you but..." (although they don't seem to mind.) I am tired of smiling and telling people, "I'm great" when all I want to do is lay down.  I am tired of feeling guilty because I don't feel well and even though I am a stay at home I can't work the book fair because kids with simple viruses seem likely to cause me to have pneumonia.  But what I am most tired of is the unknown.  It seems like everyday something new hurts or I develop a weird twitch or some other stupid thing.

     2.)  I am going to scream and then probably cry.  No one is home right now.  Our kids are at school and my husband is out busting his butt working for us because 4 kids are expensive.  Unfortunately, I am not much help in that area either.  They eat a ton, and for some reason they have feet that grow every 10 minutes.  Let me tell you this folks those shoes are like car payments now too!  Thank the good Lord Todd never flinches about taking care of them when it comes to this stuff either.  Even though I am super angry today I am still very thankful especially for my family.

Today, I am going to tighten every muscle in body (even the ones that hurt) and I am going to scream as loud as I can, "I hate you NMO!"  Then, I am going to cry and get it out, every last bit of it.  One of my bffs, Phoebe told me "crying was therapeutic and being tough all the time wasn't." She was correct.  No worries though because autoimmune illnesses seem to pile up on top of each other and my body also gifted me with Sjogren's syndrome so I won't have a ton of tears rolling out.

     3.)  I am keeping my PJ's on ALL day, well until about 2:50 when I leave to go get the kids.  I am also going to take a nap.  I never take naps because I feel guilty about it.  I feel guilty because my contribution to the family is not financial.  I feel guilty because usually our house seems like a mess and since I stay home I should keep it neat and tidy (Leave it to Beaver style).  I feel guilty because even though I do laundry all the time we still have 84648916 loads to do.  Seriously, how do they dirty so many clothes?

Today, I am exhausted, obviously angry and just don't want to deal with it.  Today, I am completely over it!  I quit!  My body obviously went on strike a long time ago so today my attitude is joining it!
So, until 2:50 when I leave to get my kids I guess NMO wins.  It beat me, I hate it.  But when I get my kids I'll take my life back and start working on beating it in extra rounds, extra innings, overtime, the 3rd set or whatever sports analogy works for you.  Feel free to insert it.

This is real life people.  I do not always have a great attitude like I have been told.  Today I am whiny and I am not apologizing for it.  Today my glass is half empty.  I don't really feel well (yep, I said it.)  I have fever again for absolutely no reason.  I am 44 years old and I have to cath myself, my head pretty much always hurts, my eyes are usually so dry I have to physically open them with my fingers in the morning.  It is dumb!  No one should have to deal with this stuff.  I worry every day my kids will get one of these stupid diseases.

Every one needs a vice.  I don't smoke, I don't drink (I even gave up Diet Coke because my bladder is a loser!)  Today my vice is anger and self pity!

For now NMO wins but at 2:50 it better watch out because I am going to be well rested and refreshed.  I am going to take those stupid lemons and make them into the sweetest glass of lemonade it's ever had.

Oh yeah, I almost forgot!  I am also going to eat a giant bowl of Neapolitan Ice Cream and I am not going to feel one bit guilty about it!

Oh the irony....

I hope you are sitting down because I am about to blow your mind!  I have a terrible UTI…again!  Guess what? This time I am mad.  Mad and miserable.  What a combination, a mad and miserable one eye woman who occasionally drags her left leg and right at this moment can not stand up completely straight because my kidneys have had enough of me.  What a picture!  Raise you hand if you see a pirate telling this story.  I do!  I just need a jug of “ale” and Johnny Depp on my arm and I would be all set! 

This time I can’t really blame my NMO for all of it.  This time it’s on me.  We have had so much going on lately I just decided to ignore all my symptoms.  My thought was either it will go away, or I would call the doctor as soon as we got through with Trick or Treat, or tennis tournaments, or school parties, or whatever else all those picture-perfect moms do.  Honestly folks I am just sick of being probed!  I already probe myself 3 times a day and in case you missed it, it sucks!  Not to mention I just did not have the enthusiasm to sit in a paper-thin gown and watch the hair on my legs grow while I froze to death.  Nor was I sure if my unmentionable parts were ready to greet a doctor when he walked in the room.  Seriously it goes like this:  paper gown, tiny paper blanket, “hello” medical staff (my face is up here), get probed while they promise it will only hurt a little (fake news) and antibiotic.  Not to mention my medical history which takes for ever to explain if they have a new nurse.  God bless her, I’d probably want to throat punch someone like me if I had to take their history. 

As we have discussed before I am practically a doctor.  Especially since Direct TV started showing all the seasons of “ER” again.  That plus “Greys Anatomy” come on, where’s my stethoscope?  Due to my advanced knowledge I could just riffle through the medicine cabinet and find enough old Amoxicillin and Cipro to make at least a full 5 days!   Calm down Mom (she really is a doctor), I didn’t do that.  Antibiotics aren’t really a friend to a person with all my autoimmune issues so I always pray it is the right one.

A couple of my close friends who have had to hear, “The Tales of My Urethra,” have asked why the Botox didn’t resolve my bladder problems.  The Botox worked, it worked great!  I could jump on a trampoline and sneeze at the same time right now and not drip a drop.  Before I could just be sitting in my car and hear someone in the back-seat sneeze and lose some fluid.  I believe that is called, “overactive bladder by osmosis.”  So, I say with complete confidence, “Botox works,” and as a bonus I am pretty sure my bladder looks much younger too!

Since we last talked, I have also been to the neurologist.  In case I haven’t told you, he is great, and I have complete confidence in him.  Anyway, I have developed a new symptom that is referred to as an “MS hug.”  The irony in this is amazing.  I don’t hug.  At all.  My mom is all touchy feely, my dad is not.  Guess which one I am like?  On Christmas one of my mom’s gifts from me is a hug (I consider it the gift that keeps on giving).  For example, my cousin, T.E. is by far one of my most favorite people on the planet.  He is a few years older than me and for as long as I can remember I have thought he was fantastic!  I used to follow him around everywhere he went.  I drove him nuts.  I still do. We text funny messages. I text him questions (he is a doctor), and he makes me loads of peanut butter balls every Christmas.  My point to all this “Superhero T.E.” talk is that I don’t think I have ever hugged him, not one time.  Seriously friends, not one time!  

So, I have some stupid hug that many Multiple Sclerosis patients suffer from go figure.  I don’t even have MS.  But I do have its evil cousin, NMO.  This hug is just how it sounds, a suffocating squeeze around my chest that not only hurts but makes me feel like I can’t breathe and then I get anxious.  Hugs are taunting me.  It’s like they (the hugs) are getting revenge on me for every time I would see someone at Target but acted like I didn’t, so we wouldn’t have to hug “hi.”  It is a very cruel symptom and further proves that hugs are evil!  They spread germs, place you awkwardly in someone’s chest, inevitably sniffing their hair that desperately needs washed.  Most importantly though they suffocate me!  So, guess what?  There is a pill for that.  

If you are counting, that is 2 new issues and 2 new pills.  If good things come in threes, then what in world is next?

But you know and I know it could always be worse.  Truthfully, it could have been better much quicker.  Like I said, I waited and waited to even call the doctor.  I am beyond “peeing in cup” and the longer I wait the more my body hates me.  I felt the UTI coming on like gangbusters but, and wait for it people, my 10-yr. old daughter was playing in her 3^rd tennis tournament in Lexington and I was not about to miss that!  I am that parent.  My loving father calls me a, “Little League Mom,” all the time.  And, listen carefully…I don’t care.  I love watching our four kids do anything from painting a picture to playing in a tournament.  Everything they do is awesome.  While it goes without saying, they get all their skills from me.  I sit in the chairs or bleachers and watch like they are winning the lottery.   But when they are done, I am also the mom who speaks the truth.  I’ve said things like, “You played great!  Too bad they played better” or “Geez your serve really stunk today.”  I think one of my greatest moments came when Jack was 8.  He was a tiny, round, asthmatic kid who tried so hard, but basketball just wasn’t his calling.  Right about the time the gym became completely quiet I stood up (I was possessed) and I yelled, “Get the glue off of your feet!”  I still hear about that one from time to time.   In case you missed it, I am vey competitive.  

Anyway, I took my chance on my bladder getting worse because Olivia needed to play in that tournament and no way was I missing it.  That’s right, this time it was Lexington but next time I am sure it’s Wimbledon, why else would she have to be in that tournament.  On changeovers, I would run to the bathroom and occasionally cath myself (I am that good at it now, jealous?)  At one point I walked outside using the excuse, “I can’t watch this, it’s horrible tennis.”  Yes, friends instead of saying my urethra was trying to kill me I said 10-year-old tennis was “bad tennis”.  Thank the good Lord my mom was there, and she played an Oscar Award winning, “Proud Ma-Ma”.  She was able to talk to the other family (who numbered 9!!! what in the world) and when they would brag, she would brag and show an iPhone picture to back it up, Ma-Ma-1, Party of 9-0!  I’m never rude (unless I have no choice lol) but I want to watch and not talk, especially that day.  I do talk and from time to time I’ve been known to call someone out.  I absolutely love (insert sarcastic grin) the “out loud” critiquing parents talking about other kids and I especially love it when it’s about my child.  I usually say something like, “that’s my child out there so maybe talk a little quieter.”  I am that mom and I’m not sorry.  I am also that mom who loves every little thing my child does, and I won’t allow them to suffer because my body isn’t 100%, or right now even 75%. 

Our kids have worked very hard to get as good as they have in a short amount of time.  It isn’t their fault that I have NMO.  I have said from Day 1 of this crappy diagnosis that I won’t allow my family to suffer because of it.  One of my greatest fears is that when our children get older they will only remember me as being sick.  I have always said, “the greatest gift God has given me is to make me a mother.”  He blessed me with 3 and a bonus, and I won’t let Him down.  I won’t let them down either.  You see when NMO attacks me I refuse to let it attack my family too.  It won’t beat me.  So, from now on when it “hugs” me I am going to just hug it back.  Heck, I might even kiss it on the cheek and tell it to kiss me somewhere else. 

Help me Joanna Gaines!

So next time you all see me I want to know if you can tell I had Botox.  I was very nervous about it.  Especially, the results.  I am anxious to see if it will make me tighter and less saggy.  I have high hopes for this vial of medicine.  I am fairly sure you won't be able to tell though.  This botox was shot into my bladder.  I did ask the doctor if there was any left after he had given my bladder a good tightening could he put it in my face?  I'm not sure if he thought it was funny or that I was serious.  But, I was.  Seriously though, who wants botox when no one can see the results?  It's not like I can walk around the mall and people will stare and tell me how "young my bladder looks these days."

I bet I can write a sentence that you have never said but I have.  If any of you have said this sentence before please call me.  I'd actually like to take you to dinner because we are destined to be the very best of friends.  Have any of you said, "I can't right now I am icing my urethra"?  Because I have.  Jealous?  I know, most people are.

As I am sure you have figured out, I am going to talk to about having my bladder botoxed.  If you want hear about it, keep reading.   If you don't, this is your warning to the close the window.

The morning started like any other;  alarm goes off, wake kids and husband, be a short order cook, take a shower, take a Valium, hop in Mom's car and head to your probing.  Isn't that your typical morning also?

I should probably mention that I didn't sleep much because I was surfing the internet for information on this procedure.  Out of probably 50 patient reviews, 25 gave it a 1 for extremely dissatisfied and 25 gave it a 10 for extremely satisfied.  Everyone said it was painful, but I blew it off.  I decided those were probably men.  Poor Todd can't even stand/sit up straight when I mention this procedure.  I figured I had twins, how bad could it really be?

I was already taking antibiotics to prevent any possible infections and at precisely 8:00 am (1/2 hour before my procedure),  I downed a 5mg Valium.  That was a very well spent $0.34.  Mom sat with me while the clock ticked all the way to 9:30 am, one full hour after my procedure was scheduled.  Luckily, my mom is a genius and a retired physician, so when she told me that my Valium was still working, I believed her.  I was actually very calm all morning (see, well spent $0.34).  Sometime between 9:30-10am they call my name.  Odd side note:  for years and years I couldn't wait to be "Julie Aldridge."  I have to admit though as much as I love Todd and sharing his name, I'm pretty sick of hearing nurses yell it in the waiting rooms.

So back to 9:30-10 am, the nurse called me back, took my blood pressure and all the normal vitals, made some small talk, and then escorted me to the last room on the right--The Procedure Room (insert "evil sound" which I can't figure out how to spell).  As soon as we walked in I could see it was all prepped and ready (spoken like a Grey's fan.)  Two things I have learned as a woman:  1) The paper cover is not warm, and 2) when you see stirrups go ahead and tell yourself you are in trouble.  The nurse gave me the standard "waste down" directions and said she'd be back to numb me up.  I undressed and covered myself  with the amazing paper blanket.  Do you think that is your standard poly/cotton blend?  Not too long after that she was back to numb me up.  I think I needed some numbing for the numbing.  She finished and said they would give me a few minutes to let that kick in and she would be back with the doctor.

OK, here is the truly messed up part.  That Urology office needs a visit from Chip and Joanna and soon!  I am guessing you have a visual from the paper blanket and stirrups talk.  Now, picture the stirrup end of the table facing the door!?!?  Who in the hell designed this room?  So I'm on the table staring at the ceiling and hear the knock.  In walks my doctor, "Good morning Julie, how are you?"  I wanted to say, "well you tell me?"  Obviously by now he knew.  He had been in the room for almost 30 seconds by now, lets lay it all out on the table.  Literally.  It's not difficult to fix this.  One simple solution, turn the table!!  Any "Fixer Upper" fan knows that Joanna could shiplap those walls to help preserve a little bit of my dignity.

He explained the procedure and got to work.  He did tell me how cool it was that they sent a 200ml vial because usually it's in a 100ml vials.  This way I would only have to get about 1/2 the shots, somewhere around 15(I'm not 100% sure on that number, I was in shock.)  He picked up the tool that was as long as a yard stick and got to work.  He was very kind and offered several words of encouragement about how well I was doing.  I was calling "BS" to his sentiments since I was about to come off the table.   I was also praying that my stirrups were locked because I figured one quick kick and I was going to injure us both.

One odd thing, as he was working, he was talking to me.  He brought up foods and cooking and I had to wonder why.  What about what he was doing triggered a discussion of food?  What are you looking at down there, doc?

As promised he finished in less than 10 minutes and I was on my merry way.  I will spare you the details.  But I will tell you that was the easiest part of my day.  Mom drove me and home and I headed in to lie down.  However, I was already miserable!  I was on fire and dreading using the bathroom.  I just kept telling myself I got this!  The great news is that I don't have to repeat this torture for another 6 months.  The greater news is that I have a very good friend who also goes through this humiliating experience and she has described it as "life changing."  My hopes are still high.  Right now I am focusing on the now and praying my bladder is centerfold ready in 7-10 days!!

Watch Out for the Seagull

You know that “tampon box tower” at the grocery store?  The one some young kid giggled about the whole time he stacked it.  He knew that someone would knock it down and hopefully he would be there to see it.  Well let me introduce you to the man who would brave that tower (even knock it over) for me.  The very first man I ever loved, my dad.  I think I have introduced you to all my immediate family except my dad.  Let me tell you how he fits in to my NMO story. 


My dad has been the one present any time something has happened to me.  When I was pregnant with the twins, he was the one who took me to most of my appointments.  I was on bed rest towards the end of my pregnancy so he would drive the long way just so I could be out a little longer.  He had a truck at that time, and I couldn’t even get up into it.  He fixed that too.  He kept a step ladder in the back for me.  That’s right folks, he is amazing!


He has been there for everything.  He was with me when I went into labor with both pregnancies, kidney stones, even staying up all night to help with sick babies.  He has laughed with and at me, hugged me while I cried and is always the first to give me a reality check and tell me to straighten up.  So, now you know all the mushy Hallmark card stuff, let me tell you the NMO reality stuff. 


My dad is in “hope” about my illness.  He “hopes” I will get better and he “hopes” I won’t get worse.  He probably won’t read this blog.  He tries to keep me from thinking about it.  Sometimes when my eye isn’t working very well and I mention it to him he will usually say, something like, “maybe you are just tired.”  I think it hurts him to think about it.  I’m sure it does.  I hate when my kids are sick and I want to fix it, any good parent does.  Unfortunately, though, you can’t fix this with Tylenol or a band-aid like you can with so many other illnesses. 


As a matter of fact, I have never even heard him say NMO.  He calls me every single morning just to “check in.”  If there is something going on with me or if I sound tired, he will say, “do you think it’s your stuff?”  He may not say NMO, but I know he hates it.


There are some weeks that when Friday rolls around I feel like I just can’t take another step.  I promise you I don’t tell him or ask for pity; I try not to talk about it all.  But, on those weeks he seems to know because he will call me and ask if he and mom can keep the kids overnight or if he can come get Olivia for the day.  His timing is impeccable.  I am extremely grateful for it.


He has also been there for some pretty funny NMO moments too.  The place where my parents own property on Hilton Head Island is right on the water.  There are plenty of sea gulls flying around.  One time it was just he and I in the car and we were parking, so we were driving very slowly.  My bad eye is on my left side, coincidentally, so is the drivers’ side of the car.  Out of nowhere I yelled, “Dad, get down!” And I ducked.  He hit the brakes and luckily we were in that tiny little lot.  He said, “Julie! What the hell are you doing?!”  I explained to him that there was a sea gull headed straight for his head.  I was wrong though because there weren’t any sea gulls around at that moment.  But there were a couple large leaves, so I am assuming that is what I saw.  I scared him so badly he shifted the car into park and just sat in the middle of the lot.  I explained that I was just saving his life.  Sea gull to the temple could equal death.  We still talk about it every year when we pull in that lot for the first time. 


It seems like a lot of the funny moments happen on Hilton Head Island.  My dad is always great about taking the kids to tennis and letting mom and I have a day on the beach.  I love those days.  On one of those days I got up and went to the window and pulled back the curtain to disappointment.  It looked so dark to me I just knew it was going to rain.  I texted dad with anger in my fingertips to tell him Mother Nature was sabotaging me.  He was just across the hall, so he came over and asked why I thought it was going to rain.  I pointed outside to the dark clouds; my day was completely ruined.  He told me I was crazy that the sky was beautiful and crystal clear.  He told me that “my stuff” was messing with me.  “My stuff” not “my NMO”.  He never says it.


He does his best to make me see the best in everything.  After I left the urologist with my sample bag of catheters and called my mom (I know you’ve already heard this story), Mom told Dad what was going on and he called me and told me to keep my head up.  He even said this wasn’t so bad because it would make me feel better.  He always points out a time that I did something harder or important.  I am pretty sure this time he said, “you have had to do harder things.  You carried and gave birth to twins; you can do this.”  His voice is full of encouragement, but I know it is disguising worry. 


My absolute favorite thing to do with my dad since I have become an adult is to play tennis.  We used to have so much fun.  We were competitive and we played for pride and honor.  About 8 years ago we were having one of our best matches (I always play the best with him.)  He hit a fantastic drop shot and I somehow tripped trying to get to it.  I fell right on my head.  It knocked me out for a minute.  When I came to, he was standing over top of me very calmly and had even summoned a doctor playing next to us to come check me out.  The next thing I know we are headed to the ER but not before he gave me his jacket because I was so sick to my stomach.  He knew I would make myself sicker trying not to toss my cookies in his car.  He sacrificed his new Adidas jacket. I guess I still owe him one.   **On a side note this is when mom thinks my NMO started showing itself.  I have had it forever it was just hidden in me somewhere and decided to start showing up that day.


I can’t play tennis like that with him anymore.  That is one of the things that makes me the maddest about this stupid disease.  That was “our thing.”  I loved it and I really miss it.  He is my favorite playing partner, coach and tennis buddy. 


NMO really does affect my whole family.  Dad and I hope I can get this new medicine and it will fix it all.  When that happens, I am finally going to beat him.  I have never done that, not even once.  Those 3 dumb letters can’t have my tennis with dad, I will get it back.  I won’t let it win!

I'll bring the plates

People lie.  Two words, no truer sentence has ever been typed.  Unfortunately, we lie because we think we have to.  Everyone feels judged.  Thanks to social media they are judged.  Be honest with yourself (no one will know) do you troll Facebook and sit in shock over things you read and see?
Especially us mommas.  No matter what we always feel like someone is better than us.  Or at least that is how I feel.  My guess is you do too (wink).

I know I have mentioned several times that we have 4 active children, and I'll probably mention it again too.  They all play sports and they are all competitive and time consuming.  Our family is "blended".  Go ahead and judge that one too, if you must.  But because we are "blended" we try to make sure every child gets the same amount of time and attention.  That is not an easy task.  Quite frankly, many times its darn near impossible.

Every team has a team mom or some form of organizer.  This is one time that being on the NMO spectrum isn't terrible, but it is kind of a Catch 22.  I hate to even type this but it's true so here goes;
I am no longer dependable.  I never know when I may "flare" or "relapse" or just feel like poop.  Therefore, I never volunteer for that position.  I know that at least 2 moms whisper about how "Olivia's mom never does anything for the team anymore."  When I first found out I was having kids I remember telling my friend that I "couldn't wait to be the homeroom mom" or "go to Toys R Us on Black Friday to get their toys."  So at first, when I was unable to commit, I was very bothered by it, I couldn't stand the thought that the "whisperers" thought I was a bad mom, or that Olivia's mom "wouldn't be in the school Christmas party pictures serving juice boxes" that were eventually posted on Facebook or Instagram.  However, I have since come to realize that might be a blessing.  God was saving me from myself.  If I had to hang out with the "whispering moms" making toilet paper mummies at Halloween for too long I may have started judging other moms too.  You never know someones situation and 9 times out of 10 if they could be organizing the cake walk they would.  The reality is people work, people travel and unfortunately people get sick.

The "whisperers" are the whole reason we need 100 team moms now.  It has gotten so out of control that the VOLUNTEER coaches got sick of dealing with moms and decided to give them a role.  Somehow their role kept getting bigger and bigger until it was too hard to keep up.  Especially for people like me.  I can't even tell you that I will be there for sure (although I do my best for the kiddos), but I certainly can tell you that I will not be there with 25 applesauce, juice box robots in hand?!?  Shoot, before I got sick I remember one Saturday when it was my turn to bring the snacks, I forgot.  Guess what?  If your child was on my child's team they got a bag of last years Halloween pretzels and pack of gummies that my kids didn't like so they had been in the pantry for a while.  Sorry, it's the truth.

Team moms listen up.  I sincerely thank you for what you are doing, I really do.  I would love to help you with whatever you need but you truly can not count on me.  I am not dependable, though I have the best of intentions.  Seriously, don't ask me to do anything crucial or on a time table.  However, I will always bring or send the plates, but I am not going to promise to label or bedazzle them.  Sorry, but everyone should not get a snack or certificate anyway.  Snacks and sprinkles are for winners so you only need 8 not 25.  Send your kid to the concession stand like we used to do.

Speaking of concession stands if I am there and I feel OK I will happily work the concession stand.  But, and no matter what you tell me, my kids or my husband, I am not signing up.  If I feel like crap and it's my turn in the concession stand, I refuse to send myself into a relapse over Mountain Dew and Laffy Taffy.  But I used to.  I would sign up and work when I felt bad just so people wouldn't talk about me until Todd told me it was time for me to learn to say "no".  I think he even made me practice saying it.  I did it for my kids.  I didn't want anyone talking about my kids either.  My kids are fantastic at the sports they have chosen now but the few they tried before were not their sports.  I worked lots of concession stands so people wouldn't talk and so they would think my kids were a valuable part of the team.

So, because of this stupid disease I feel like a worthless mother at times.  There is nothing more important to me than my family and I hate disappointing them or having to worry someone is talking behind their back but in front of their ears.  I may come to the Easter Egg Hunt to watch my child and that's OK.  I promise I sent eggs, I just am not able to hide them that day.  I am pretty much always on the sideline cheering for my child but I am not always able to make french fries that day.

I rarely tell my kids I don't feel well but sometimes it is necessary.  "Sorry, Olivia but I can't sign up for Santa's Workshop (which is my favorite)because I am not dependable."  This is not the way I pictured explaining the meaning of "dependable" to my daughter.  Or, when there is a "pick your time slot" rule I have to send the paper back incomplete and in her eyes they just got a bad grade.  Really, I should be the one getting a "D" for not dependable.

The word "maybe" has become a word I hate.  It's also the most truthful word I speak.  Luckily, I have a great family and an amazing set of friends.  Just last week I was supposed to have lunch with one of my best friends but woke up with a horrible headache and eye pain.  The kids had tennis that evening and it was crazy hot outside.  I knew to even have the chance at sitting through their matches, I had to cancel lunch.  My friends are always fantastic, always understanding and willing to take a rain check to an unknown date and time.  They know that could get cancelled too.

God Bless the team moms and PTA presidents!  You do a lot of work and I know it is a thankless job.  I also know the ones I've talked about in this entry are few and far between.  Most of the time you all step up and do what everyone else doesn't.   I would love to help those team moms more.  However, I won't be volunteering.  But, don't worry I can find what you need on Amazon Prime and get it to school ASAP.  Heck, I'll do the plates AND the cups.  I can even order colored ones if you feel like that is necessary.  But, it's a crap shoot if I'll be there to hand them out.

Still looking for my favorite hat

As a stay at home mom I have had people ask me if it is hard to get 4 kids up and out the door every morning.  I first remind them that I also have a husband and then I explain to them that thanks to NMO our mornings have changed a little.  

At 6:07 am my alarm goes off during the week.  Yes, it's 6:07 that is not a typo, I am weird and I have always been weird.  So I put on my slippers and my hotel front desk clerk hat and go to wake everyone.  I go to each childs room one at a time and wake them up.  I am pretty gentle as I walk over and tap each one of our little blessings and sweetly tell them, "Good Morning."  They all wake with smiles and tell me "Good Morning" back.  I usually go downstairs and start making homemade biscuits, pancakes or bacon and eggs whichever they prefer.  I pack their lunches with fresh fruits and vegetables and cut their club sandwiches into hearts or stars, kiss them on their forehead, and send them off to learn.  I really do think Carol Brady would be proud.

That is so funny! I read it out loud just so I could hear how lovely it sounds!

Here is our morning reality, at 6:07 am my alarm goes off and I hit snooze.  It goes off again at 6:14 am and I think I growl and get out of bed slowly, very slowly.  I would love to say I run to the bathroom because the urge is so strong, but we all know that does not happen.  Every child has a specific way they like to be awakened.  Yes, it is perfectly fine to think they are spoiled, they are.  Feet tingling I shuffle to Jack's room first to wake him.   Jack needs to be told to get up sometimes several times but I do it until he answers, once he answers I know he is up and I can move on.  My next stop is Sophi's room.  Sophi is not a morning person.  She has "requested" that I turn on her TV and do not turn off her fan.  Most importantly though I have been told "no lights" because the light in the morning causes her to have a headache.   

Moving on I head towards Barrett and Olivia's room.  They share the bonus room luckily, it is large because they are definitely two different and unique kids. By the way, I am still moving slowly and my dry eyes are still trying to focus.  On a side note, I also have Sjogren's Syndrome, but I will save that for later.  I know the suspense is rough consider it a cliffhanger.   Barrett is actually happy in the morning, honestly she's happy most of the time.  Barrett likes you to touch her arm or back and wake her.  It takes a minute but it works.  She usually sits up and hugs me.  Olivia is a whole different story.  She likes for one certain light to be turned on. I feel sure that she thinks if I hit the wrong switch then the punishment is jail time. This light is serious business.  After all this chaotic nonsense I head downstairs to prepare a gourmet breakfast of toast and/or Pop Tarts, just like a bakery.  Usually on my way down I make one last check to be sure Sophi is up.  

Are you now asking yourself, "where is that amazing husband you always talk about?"  Well Sophi gets her love of mornings from him but by this time he is in the shower and getting ready for work.  He has 2 jobs, Bus Driver and Sales Representative.  None of our kids are in district so there is no yellow bus for us, Bus Driver Todd to the rescue.  Only under "emergency" situations do I put on my Bus Driver hat and take the kids to school.  Thanks to NMO I don't always trust my eye (remember that crazy left eye) my feet are pretty much always tingling now and waking up and moving take me a while.  Oh that and this stupid catheter, however I am getting pretty good at it.  But, don't worry I still do not have plans to make a tutorial video or anything.  Long story short, on my days to take them I get up an hour earlier so I make sure I am wide awake and good to go. 

By now I am downstairs and I change into my short order cook hat.  Ok folks, put on your glasses and get ready because I am about to blow your mind with my skills....

Each kid eats and drinks something different.  I plug in the toaster and get to work.  Sophi is a cinnamon toast girl with cinnamon butter.  I could actually toast that with Jack's "Wild Berry" Pop Tarts because they like the same toaster setting.  But, I can't.  Jack is usually the first one down in the morning and Sophi is usually the last so her food would get cold.  Barrett barely likes her "Strawberry" Pop Tarts toasted she just prefers them "warm."  This is where I put my masters degree to work because the toaster is already hot (Wild Berry, remember?) and Barrett will be next down so I throw hers in for mere seconds and tell her "Bon Appetit."  Olivia lives on the edge, she likes to mix it up so either her "Chocolate  Fudge" or "S'mores" Pop Tart will be next and she is just a regular toasted kind of girl.  Finally, Sophi's cinnamon toast gets its turn.  I know what you are thinking where are their amazing gourmet café style drinks?

Without further ado, the drinks!  Jack likes 2% white milk, Barrett prefers chocolate milk, Olivia has had some lactose issues lately so gets Lactaid and Sophi doesn't like milk in the morning so it is OJ  on hot mornings and tea on the cold ones.  At this point I am so thankful I have a meteorologist hat to put on now.  

During all the toasting I'm packing 4 lunches unless it's Spaghetti day, then I only have to pack 1.  Jack has never eaten a school lunch by choice (once or twice he has forgotten to grab his lunch off the counter and had to just suck it up.)  It never fails on the mornings when we are off of our game and running late it is "Beefy Nacho" day and I can't even get them to consider a tray.  I would like to honor Smuckers with a moment of silence for inventing "Uncrustables."  As I am sure you have guessed by now each kid likes different items in their lunch but luckily they all like Uncrustables, PTL!!!  They aren't cheap though so for about a week last year I tried to make my own, that was not popular.

Some of the kids take medicine in the morning so I also wear a nurse's hat.  As I am sure you are aware I also take quite a bit of medicine.  I do much better if it is at a certain time of day.  I try really hard not to let the kids see my NMO, so I do my best to take those before the kids come downstairs.  

Once all of the kitchen stuff is done, I am exhausted.  It is so hot right now I am extra tired and hurt a little more too.  Of course with 4 kids someone usually has unkind word for someone else.  Between that and how tired I am this will push my patience but I hate for them to go to school upset so I put on my peace keeping referee hat and send them out the door.  

My reward every morning after the craziness is my recliner and DVR'd shows.  As I have mentioned before I don't like to miss any trips with the Busby's.  Wednesdays are my favorite mornings because I watch Dance Moms from the night before and feel better about my parenting skills. 

However, the reward I want most after the morning hustle is to be able to go for a walk with a friend, play tennis with my dad or jump in shower in anticipation of meeting a friend for lunch.  Unless I have a Dr appointment or an infusion I usually sit for at least an hour.  Sometimes I am so tired I even fall asleep.  I feel so lazy when I do that.  If I listen to my mind in the quiet sometimes I get so down about my laziness I have a tearful pity party.  So my hat changes to "patient."  I really hope I get to burn that hat one day soon.  Until that day though I just keep fighting and looking for more hats in my closet to help me on my journey.

Sweat down my back, sand in my crack

It's one of my favorite weeks of the year and it started with a fun new game.  I think I will call this new game, "What's in the Water?" Earlier this week I was watching the waves in the ocean and all the kids playing in the sand (none of which belonged to me, thanks Dad) when I saw something that concerned me.  I jumped up and headed towards the water while adjusting my hat and sunglasses to make sure I had a great view.  I was sure I looked like one of those Baywatch lifeguards moving quickly towards the water.  The only difference was instead of my chest and tight little booty bouncing, I was dragging my leg a little and covering my left eye looking more like a peg leg pirate than a Baywatch babe.  I was already visualizing the headline in tomorrow's "Island Packet"  which would be big and bold reading, "WV woman saves swimmers from a Great White."  As I could feel the word "SHARK" beginning to curl up on my lips and I took a deep breath so I could shout extra loud and then I realized what I should have truly been shouting was "STICK!"  That's right folks, I almost saved all the beach goers on Hilton Head Island from a stick.  I know my mom was so proud.

Like I said, it is pretty much my favorite week of the year.  It's just me and momma, two beach chairs by the water and bright ray of sunshine.  But, I have to say that sunshine is also my enemy.  The heat is x1000 for me.  I need to be in or near the water because being hot means I hurt and my vision gets really blurry especially on the left side.  So while it is a stress free trip (again, thanks dad), my body is in full stress mode.  Electric shocks and tingles are my theme for the week.

The heat sucks but I love a good tan.  As a very wise woman once told me, "tan fat looks better than white fat."  Also, I wouldn't miss a week with my mom for the world.  I hope one day my kids want to go somewhere with just me (but maybe 1 kid at a time.)  My dad told me long time ago, "be nice to your mom one day she will be your best friend."  He was right.  Even though she drives me nuts sometimes (I am sure it's mutual), she is also my greatest ally.

My amazing dad has offered for the past several years to keep my kids so my mom and I could spend some quality time together and I am forever grateful.  For all of those saying, "Where is her husband?"  He is working and can't get the kids back and forth to all their activities and we would hate for their social life to suffer.  Luckily, my dad is awesome enough to do all that running too!

The trip this year was a little different than the past several.  Unfortunately, I now have a little bit of a hard time sitting in the car for hours on end, my body and my head start to really hurt and then I get anxious.  So this year Todd suggested we fly.  PTL it was great!  My bag definitely looked different this time too.  Inside my bag was another bag full of medicine, a hand mirror and a box of catheters.   I'm not going to lie, I think even though I might have been a little embarrassed if the TSA agent would have picked my bag for screening I would have laughed.  Especially if they wanted to know about those particular items.  But no worries, I would have answered politely and offered to let them try the catheters out if they needed to.

Because I get so hot and begin to hurt, we can't spend all day out there by that amazing ocean.  It's a double edged sword for me now, the heat makes me more tired than normal but I don't want to make mom not enjoy the ocean.  Of course she never complains and we still have a great time, but I do feel terrible about asking her to leave the beach and sometimes push myself too far.  The early leave time has led to our new little ritual.  We are in our PJ's by 7pm ready to watch a movie on cable.  I even put in new contacts for this week.  It is very important I have fresh eyes.  It isn't every day you get to save someone from sticks and watch a movie from the early 2000's.  Obviously, the new contacts make it an even better experience!

I try to make it as long as I can by the water.  No matter what my what my mom says, she loves the ocean!  I love to look at the ocean but I do not like to get in it.  Especially when I can't see through it. Today was HOT!  I was miserable and sweating so bad that my sweaty back changed the color of my chair from light blue to dark blue.  I contemplated sitting in the ocean but I for one do not enjoy the sand in my crack!  So on days like today I do the best I can.  Today, I unfortunately had to cry "Uncle" and bribe mom with a "beverage" at the pool. Today I just couldn't do it and I knew I better listen to my body.  My mom never complains or asks for "five more minutes."  As a matter of fact she even acted like going back to her condo, putting on PJ's and ordering pizza was the best idea I'd ever had.   She always understands and never complains but I hate it.  I hate it for her and next time I'll hate it for whoever I am with.  I do not want this disease to affect my family and I do not want it to define me.  It isn't fair though because NMO affects everyone and while it may not be affecting them physically it does emotionally.  Basically what I am saying is, "NMO sucks!"  Actually I'm shouting it to anyone who will listen and I am shouting louder than I was prepared to shout, "Shark/Stick!"

Until it is completely impossible for me to come to Hilton Head with my family I will continue to come.  I hope I always get this "week with momma."  She is amazing, smart and fun.  When I grow up I want to be just like her.