#Tribalgoals

 #Tribalgoals

I always hear people say, “find your tribe and love them hard.”  I say, “Amen to that!”  But I have another tribe I love hard too.  My tribe of doctors and nurses.  They are simply amazing!

                That is not something you often hear, but truly I would trust them with my life.  I guess I already do.  I have trusted them with my brain.  There is proof I have one by the way, I have seen the images.

                Recently, I had a routine checkup.  I have 1 probably every 3-4 months.  He says he likes to keep an eye on me.  As we all know, my bladder issues have taken over my life.  Oh, and yes, I have another uti!!  I am going for a record.  I will have to google that, maybe I can get a mention in the Guinness Book of World Records.  Can’t you just see it, go to Gatlinburg and see a life size statue of me with a thumb up holding a sterile cup and a bottle of Cipro.  I know my mom would be so proud!  Hey, everyone needs a goal, right? 

                Sorry, my Ritalin kicked in and my mind is moving fast, I got off topic.  One more reason they keep an eye on me.  Ritalin makes me wild!

                Anyway, I went to the doctor and I was fairly miserable and pathetic I’m sure.  He was concerned because 45 days with a UTI (a few breaks in between when the antibiotics were working) is not the ideal goal for your bladder. 

                Here is how dedicated he is to his patients.  I saw him at 10:40am and by 2:30pm I was at the hospital drinking some kind of vile and waiting for a CT Scan.  By 9:00 am the next morning he had already texted me the results, changed some doses on my medicine and let me know my kidneys were ok.  I have just had a horrible infection and need a long dose of antibiotics.  What an easy fix to a major pain in my butt.  Well not really a pain in my butt.

                He has been through a lot with me and my family.  I have been septic, had serum sickness and had some anxiety issues (no judgment, I think its warranted).  Anyway, he has always been there.  One time in the hospital he taught me how to make the heart monitor go off so I could scare the nurses, it was funny, hospitals get very boring.  If he told me to jump off a bridge, I would do it.  Hopefully, he won’t though, I’m pretty sure that is bad medicine. 

                Let’s discuss doctor #2 in this tribe, my neurologist.  This is the one who deals with NMO crap (I’ll sensor just in case) and it’s a giant pile of it too.  Thank the Good Lord he is young and will outlive me.  If I had to give that history every time it would be awful!  I would also trust him with my life.  He is my brain and spine man.  He has to keep me seeing, sane and standing upright.  That is not an easy task. 

I am pretty sure that there are times he would like to throw his phone out the window driving home because I text a lot.  I text with questions.  I text with scares.  I text for help when I relapse.  He never says a bad word and he always answers, and he always helps.  He never rushes and he always listens.  One time my husband, Todd, was with me.  I got some not so great news about symptom progression and I completely lost it right there on his table.   It wasn’t necessarily the news that upset me, it was Todd, I felt so sorry for him.  The look on his face was a look of love but also a look of pity and sorrow for me.  I completely lost it.  I mean lost it, like a 2yr old who can’t find their blanket.  Not only did I bawl but I verbal vomited all over that room.  I looked directly at the doctor and I said, “This is so unfair to Todd, he shouldn’t have to deal with this.”  And I admitted in front of my doctor, 2 residents and my wonderful husband, “I think I am depressed.”  Todd tried to be supportive, but his head dropped a little and I cried harder.  My amazing doctor rolled his little stool up in front of me, told me it was ok, handed me a tissue, looked me directly in the eye and said, “Who wouldn’t be.”  With tears in my eyes and I’m sure snot rolling down, I smiled, Todd smiled, and I began to calm down.

He is so determined to help me that he asks others for help.  He has sent me for consults at Cleveland Clinic, he has consulted with Mayo (with doc #3) and he even sent me to WVU.  Not only is he an amazing doctor but he is also a huge Herd fan, so I truly felt the love on that WVU consult.

Just like my other fabulous doctor, if he were to tell me to” jump off a bridge” I would do it.  But, once again let’s hope they never say that.

Rounding out this trio of the “Team I would jump off a bridge for” is my immunologist.  I was referred to her because I would stay sick.  She may very well be the smartest person I have ever met.  She discovered I was fairly deficient in IGG, IGM, and my IGA was basically non-existent.  She immediately started me on monthly IVIG infusions and I don’t get sick nearly as often as I used to.  The need for IVIG is very common in NMO patients. 

Another wonderful thing about my tribe is that they communicate with each other.  I don’t’ think I’ve been to see her when she hasn’t said she had just talked to my other tribe members.  They always have a plan.  She is very thorough.  One time she called a colleague at Mayo clinic about me.  She got me into a study there where we learned a lot about my blood levels and possible treatments. 

Just like my other 2 tribe members she calls me every single time I have test results.  She explains everything about them and then answers all my questions.  She has written letters to insurance companies on my behalf and offered to explain all the confusing they try to block you with. 

If she is sniffling, she wears a mask because my immune system is so shotty.  Surely, you all know how horrible it is to wear those masks.  She is kind, caring and compassionate, but most of all when she might be contagious, she doesn’t share it with me. 

My point to all this is when you are dealing with a wicked disease like NMO it truly, “takes a village” to keep it controlled.  Make sure your village will, accept all your calls and texts, try to find a better solution every time, go to bat for you, communicate with each other, hold your hand when you cry (even if you have snot going down your face) and most of all be your friend.  And, always remember, “my tribe is better than yours.”

You want what...for what???

You want what….For what???



                For those of you who can remember the days of chasing a Cabbage Patch Doll or a Tickle Me Elmo, let me tell you I can relate.  I’m not chasing anything as fun as that.  Instead I am chasing sterile water.  That’s right folks, sterile flipping water.  Apparently, its quite the sought after item you can only get it in the pharmacy with a prescription, oh AND it has to be ordered.

                So, I have recently added a super fun activity to my night time routine.  It’s not every night, lets not get carried away, I am too old to have that much fun every night.  On the “party nights” as I like to call them I get to wash out my bladder.  Stop!  Don’t be jealous.  And, most importantly don’t every say I don’t know how to have a good time! 

                My doctor has decided washing my bladder might help me stop getting UTI’s every other week.  He did write a prescription for the sterile water but, my insurance won’t pay for it.  I don’t know about you but I don’t see sterile water a being that expensive, but what do I know?  Instead of fighting with insurance, which I have gotten good at, I decided I could find it on my own. 

                OTC sterile water, how hard can that be to find?  If it would cure my UTI problem I’m going to find it quick too.  Once I found out how hard it was to find I flashed back to having to call around for my hard to get pain medicine.  After sitting in my car for a little while trying to get control of the flashbacks, I decided I really didn’t want to be a “seeker” again calling all the local pharmacies and asking for sterile water.  In my mind it sounded like a prank call, you know kind of like, “hello, is your refrigerator running?  Well, you better go catch it.”  But instead I would have to ramble on about how I have NMO and it has caused a neurogenic bladder and blah, blah, blah.  So I decided I could just go into the pharmacy and maybe they would see I wasn’t “jonesing” for the sterile water.  You know because the hot new trend is “sterile water addiction.”  I can just see the Dateline episode, “Sterile water it’s not just for bladder washing anymore.”

                I really wish I would have worn the Go Pro and caught the exchanges.  I would walk in the pharmacy approach the counter with hope in my eyes and say, “Hi, I have a rare auto-immune disease and it has caused my bladder to suck and long story short I need to do a bladder washes.  Unfortunately, I can’t get the sterile water to put in my catheter to do them.  Do you carry it?  I have a prescription, I am not “seeking” but my insurance has decided to pay for Viagra instead of sterile water right now?”  That was all in one breath too.  I was embarrassed and anxious, and I talk fast anyway (according to my mom) so it came out in warp speed.  And I was always asking a 19-20 yr old young adult most likely on their first day at their first “real job.”  Their reaction was priceless, “you need what?  You want to put it where?”  Mostly though it was, “Ummm, Ok, let me ask because I don’t what that is.”  I was asking way too much, I am pretty sure several of them couldn’t spell “NMO.”  One young man, I kid you not actually began to wiggle with a look of horror when I said the word “catheter.”  At first it was funny (and pathetic) but as it became my daily routine for the better part of a week it got very old.  I would go out on my daily errands and stop at every pharmacy I passed to ask the same question, tell the same story over and over.  Not to mention I would eventually get the same answer every single time, “I’m sorry ma’am, but you need a prescription from your doctor for that.”  Seriously?  Is this stuff liquid gold?  This is completely insane!

Thank the Good Lord I have smart friends.  One day my friend and I were texting back and forth about our kids and tennis.  I happened to mention to her that I was at Drug Emporium.  She texted back, “I just left there.”  Jokingly I responded, “Did you buy all the sterile water while you were there?”  I had told her the day before what was going on so she knew the struggle was real.  She responded with 2 words, 2 beautiful, genus words, “Try Amazon.”  A light bulb went off in my head, I heard angels singing, I may have even squealed a little.  Why in the world had I not thought of that?  We have Amazon prime and use it ALL THE TIME!

                Right there in the Drug Emporium parking lot I got on my fancy new iphone and I ordered sterile water.  It took all of 45 seconds to find and order.  Not only did I find and order it, I ordered it through Rakuten app so I got cash back, 10% cash back on that particular day.  Sit down it gets better, since we have Prime I also got free 2 day shipping.  Just like clockwork 2 days later it was at my door!

                Gennifer Curry, thank you for being brilliant and saving my bladder!  Amazon should put you on payroll!

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.