here we go again...

Did you ever see a picture of yourself and think good grief I'm sick of my own shit?  This is a really cute picture of me and my husband from the other night at a concert.  We had soooooo much fun with our friends and I love this picture of us... but I'd be a liar if I didn't admit that when I looked at it after my friend took it my first thoughts were... 1.. soooo cute... 2... good grief girl do some fucking situps...

I've been down this path a few times in my adult life.. I'm just thankful this time it only hit 30 lbs gained and not the unintentional 50.... life happens and I've used 8 million different excuses over the past 2 years and just slowly kept slipping.. kept telling myself I'll start tomorrow.... I finally broke down last fall and did a round of therapy and am working on my mental health daily.  Life with the Sasshole makes it a constant ongoing battle.  I've finally started doing the really hard work of dancing with my demons... now I need to dance with them and leave the food bandaid out of the equation.  That's always been a struggle for me... I've always been an all or nothing type of girl (thanks dad...lol) and now I'm trying to learn something a little more livable.

My ability to work out is still there, I'm not in pain, my stamina is good.... here's the thing though... you can't out exercise a bad diet... especially if the exercise isn't consistent... I am guilty of both... I've got a lot of "beliefs" that totally aren't serving me and they aren't anything I relate to... it's the things that other people have told me my whole life, things that they believe are true.... that I am learning to let go of... because it isn't me and it's not what I believe.

I laugh when I hear the phrase "mid life crisis" because that's where I am with the big 50 rapidly approaching.. but here's the thing.. there's no crisis... it's a "coming into your own".. it's when you stop living life the way everyone else thinks you should and you actually start living it for yourself because you've finally acknowledged that you've only got one life and you immensely dislike how you've been living it.  I don't "dislike" how I've been living mine... I just let some people rent to much time and space in my head and it's time to bid them a bon voyage.  

So here goes... can you picture it?  Me, having a farewell dance with my demons in my pink fucking shoes... 

guilt vomit

Who knew a room could illicit so much emotion... the last year has come with so much emotion, depression, guilt, shame, change, happiness and most of all growth.  I am currently sitting in this office typing away after letting my thoughts run wild in the quiet for a while.  This f'n office... I have teased the youngest bio child forever that when she finally moved out her room was going to be an office... all the endless months of her stuff being in it but she was out and about building her life.  Well her stuff is out and the office is in and it brought a lot to the surface.......

The hopefully final stages of the grief of the life we were supposed to have as empty nesters... because with the Sasshole, we obviously are not empty nesters.  It took me a long time battling the feelings on my own and then in therapy to realize it's okay to grieve the life I so desperately wanted.  We spent years talking about all the things we would do when the last child moved out... and now with just one here it's harder than when we had the first 6. I always said that when I had baby number 3 all rhyme and reason went out the window... well Madilyn has proven that I truly didn't know what that even meant.  

The playpen... the one place I can confine her to attempt to shower or do anything reasonable by myself for 5 minutes and know that she's safe.... is no longer safe.  Today she decided to get my attention in the two minutes I had her in there by throwing stuff around the kitchen.. the playpen is in the play area in the living room... I'm not sure how she did it but she definitely climbed out of the damn thing!  I was greeted by her bleeding chin (just a scratch), yelling and objects flying.... she wanted to make sure I knew how she felt.... trust me when I say I heard her loud and clear...

I had my own health issue this past year that really threw me into a bought of depression and shame.... I firmly believe that in order for something to lose it's hold over you it needs to be given life...whether you speak it silently into the wind, write it down and burn it or scream it loudly for the entire world to hear.. just give it life so it loses it's power over you... so here goes... I have latent TB.  Not active, I am no risk to anyone, not even myself.  We discovered it when I had a super weird reaction to a TB test for my volunteer position last year.  It's been a nightmare ever since... with all the Covid crap going on the local health department desk jockey decided to dictate my life against the advice of my infectious disease specialist.  Two out of three numbers on the blood test were well within normal and one number was positive by .2.  Not hundreds, thousands or even one.... .2......... my infectious disease doctor said that all that test told him was that my immune system works beautifully... I had been exposed to TB at some point and my body fought it just like it's supposed to and won.  He said he would never treat for a .2....... he did his thing with the health department and never heard another peep from anyone until 6 months later.  The doctors office called, the health department passed the buck onto them for forced treatment.  It went against everything my specialist believes was best for me and my own wishes.  There was underhanded shitty threats that if I didn't treat and Ordinance 3 passed that they would remove me from my home (or remove Madilyn) because someone with zero knowledge of my actual health or life would've legally had the right to do that.  Thankfully it didn't pass but I was half way through treatment by then and not allowed to stop.  I ended up so sick from the treatment.... I had a rare autoimmune type flair from it.  So much pain in my body it was insane.  I've been done with treatment for 2 months and still have residual side effects from it that may never go away, and now I have a cute little sheet of paper that says I took my meds like a good girl BUT... that same sheet of paper lists all of the same symptoms to watch for as before treatment.... so why?  They won't answer that question...

I'm not sure why that diagnosis instigated such shame in me but it did... I think because I grew up believing that people with TB were meant to be feared... it's such a taboo diagnosis... I went a few rounds with the health department because they kept bringing up "because of Covid".... ugh... Did you know that the year before Covid 10 million people were diagnosed with TB and 1.5 million people died from it? Yep, me neither..... no national news there... but Covid.... 

My infectious disease specialist made a statement in the midst of all of this that really resonated with me... he said "Americans over test, over diagnose, over treat and heavily over medicate rather than teaching people how to live a healthy life".......... I've personally experienced this soooo many times in my life.. It shouldn't even be a thing.. truly.. eat the salad, go for a walk and drink water.... 

My quiet time for today just came to an abrupt halt... I have a tiny dictator with her eyes barely open, yelling at me to go outside... so outside we go.... Peace, love and f'n pink shoes...

Imagine this...

 Imagine this... you are walking outside and see a woman in her car in a parking lot frantically tying her hair back while stripping off her sweatshirt and continually reaching to the floor for something.... she's sitting there in her bra in broad daylight with not a single care who's around while awkwardly pulling a shirt over her head while constantly turning around talking to the child that you can't see.  The reaching down is her frantically trying to get her shoes and socks off... she's crying, she's suffocating, she's overheating, she feels like her heart is going to pound out of her chest... she's doing all of this while trying to just breathe and calm the child in the backseat.... I'm sure you were laughing in the beginning of reading this... I'm pretty positive at one point in my life I probably would've shook my head and thought "nut job" or "WTF" if I had witnessed this.  Now I think I would walk over and offer help.

The woman is me... before naptime on a Monday... after what was supposed to be a quick and easy appointment... in the handicap parking lot in front of the Children's Hospital clinics building... this is what CTSD looks like... it looks like me talking to my sister on the phone later that evening and intermittently crying uncontrollably because I'm lost in the trauma of the morning and can't control it.  If you were in my head it's a million and one thoughts about what else could've gone wrong... what will the repercussions be with M... what will the repercussions be for me.... did it undo all of the progress I've made in therapy and with practicing mindfulness?  Will I go back to bursting into tears randomly 30 fucking times per day?  It's the "I should have.... I could have... this could have... this should have..." over and over and over.  

It's the shocking realization half way home on the Interstate that I should have done Madilyn's emergency injection for her adrenal insufficiency.. it's the tug of war between do I turn around and go back to the ER, do I stop and do her injection, do I just continue driving like a nut and hope when I get home it won't be too late for her stress dose of steroids?  It's berating myself for all of the chaos in an unexpected urgent situation that we were not prepared for.  It's what panic and anxiety look like for me because of all of the medical trauma we have been through.

It's me on the phone to our medical team as soon as I have Madilyn situated at home and have regained some composure.  It's me calling patient relations to ensure this doesn't happen to someone else.  It's me meeting virtually with Madilyn's Endocrine doctor to discuss what happened and what should've been done differently.  What will be done differently next time.... because there's always a next time.

It's going to run some simple errands on Tuesday while respite is with Madilyn and realizing as I'm going through the store that it was not my greatest idea... all the masks everywhere make me hyperventilate.. it's literally 2 trips to the bathroom while in the store so I can just focus on breathing in order to make it through the store.  It's literally wanting to slap the person who dares to say anything to me about not wearing a mask.  It's gratitude for the man in the store that started a conversation with me. I could focus on his smile and just breath for a minute.  It's gratitude that I could see an actual face in a sea of masks.

My wish for this world is kindness... you don't know what someone else is going through... you don't know what they live with... you know the old saying "you can't judge a book by it's cover"... it's so very true........ so you do you........and do it with some pink fucking shoes

F*cking Reality

 I'm a big believer in if you give your thoughts a voice they will lose their control over you....  and the reality of things is that I'm drowning in thoughts... they are suffocating me to the point that I'm in therapy and taking a Mindfulness class trying to learn how to slow my brain down and truly live in the moment.  My demons are making that exceptionally difficult right now.  It's not my first round with therapy.  I'm a huge advocate for seeing a counselor, therapist... whatever it takes.  For me this time it's working with a therapist who specializes in trauma... it's learning to "give myself some grace" when logically I don't even know what that looks like or means because I'm so critical of myself...

My therapist told me on Wednesday towards the end of our session that there are a million things when it comes to emotions and feelings but realistically it comes down to either you live in love or you live in fear.  They cannot coexist.  I have slowly over the past 5 years gone from living in love to the fear has taken over.  I have CTSD (Continuous Traumatic Stress Disorder) and Situational Anxiety (meaning all things related to Madilyn and her medical "issues").  She told me that there's a very fine, blurred line between avoidance and acceptance... I believe I actually live on the avoidance side of that line while verbally boasting acceptance...  "It is what it is" is one of my favorite things to say when it comes to Madilyn and her health.  When the truth is I'm not okay with being told "we don't know".. I'm honestly so fucking sick of hearing that phrase.. that and "we've never seen this before"... our last inpatient stay has pushed me right over the edge...

I've always known that Madilyn may not wake up tomorrow.. we've heard it soooooo many times but hearing it and living in the reality of it are two different things.  We've never had to make that life or death split second decision we've always been warned about.  Until now... it puts a whole different spin on our reality.  I use that fucking pulse ox machine to check her oxygen levels when I see her struggling... when she's sitting with her mouth open and her tongue hanging out, hunched because it's too much work to sit up straight and I can hear her breathing from across the room and it tells me 98% or sometimes 100%.... and I want to throw it across the room because something isn't right... her little body is working so hard for that and I can see it and I can hear it... I can't truly explain how it makes me feel.

I have so many emotions, demons, feelings, thoughts and guilt that are swimming around in my head so much that it's overwhelming and I often put earbuds in and turn music on just to drown them out.  I have so much guilt over all the times in the past 2 years that I have broken down after an episode with M that I have told my husband that I can't imagine doing this for a lifetime.... all the times I've told him at 2 am when she's screaming or we haven't slept that I hate our life and don't want to do it anymore.  I've voiced that fine line of devil's advocate when I say I understand how some parents just walk away... I could never do that but trust me... sometimes when I'm driving home from work I've thought about what would happen if I simply turned my phone off and kept driving with the music really loud... not indefinitely... not forever.. just for hours or maybe a day or two.... and then I come to my senses when I see my exit sign and come home..... 

When we were in that hospital room and she couldn't breathe... when she was visibly struggling... when they told us she was blue.... all that kept going through my head was "from your lips to God's ears... choose your words wisely" a friend's mom told me that over 15 years ago when I used the phrase "I love them to death".... she said that's a phrase that God could interpret as a wish..... I don't ever use those words anymore.. I haven't since that day.  But in that moment it made me question if God took my rants as wishes.... I don't even know if I believe in God and these are the things that go through my mind repeatedly...

We added to our list of "I've never seen that before" in multiple ways when they did Madilyn's surgery that day... it took over twice as long because when they went in laparoscopically to place the new feeding tube they found a thick web of scar tissue encasing all of her organs and they don't know where it came from or why.... then when they got through that they found all of her organs stuck together and they had to separate some of them without damaging or "tearing" them in order to place the tube, and then they told us that typical anatomy has markers so you know you are looking at the appendix, the stomach, the intestines etc and Madilyn's anatomy has none of those markers... if she didn't already have a G-tube placed they would of not had guides to tell them where they were at...... and then she almost died from her lung collapsing,....  the doctors don't know what to do with it or about it, they've never seen it before.... as of now it's just another thing for them to be aware of when she's having an issue because now they'll need to check to the scar tissue to see if it's growing and causing blockage to her organs... our Pulmonary doctor is talking to our Hematology doctor because she is questioning if this is why Madilyn's blood is the way it is....is this why lab work shows that her blood is struggling to circulate enough oxygen to her organs?  If it is wtf do they even do about it?  Nobody knows... our life is all one big fucking medical experiment... 

That experiment, our life, specifically her life and this past year has left me all sorts of struggling.. I did what I needed to do for my physical health and totally ignored the deep down mental health part of it.. now I'm stuck in the trenches of all of it...  I gained 20 pounds over the past year because I get caught in stretches of not mentally being able to physically make myself do something... even though I know that's what I need to do, I mentally know it's the best choice and yet I just can't.  I've never been where I am right now.  I've never spent this extended period of time where I cry every fucking day... and the most random thing will set it off.  Sometimes it comes out of nowhere.  I'm at the point that I get to work and I have massive anxiety going on... someone asks me a simple question when I first get there and I'm in tears and struggling to breathe.  I have to go hide for a minute, compose myself and then I just scurry around busying myself with everything but nothing reminding myself to breathe and that I can truly leave if  something happens with Madilyn... eventually it passes... but it's hell... I feel like I have no control.

In the past I've been on antidepressants... I refuse to go that route... I need to learn how to cope with all the feelings and emotions and where they are coming from.  I know the source, I know the reason and numbing won't fix it... so I have to feel it, all of it.... the good, bad and the ugly... and figure out how to live with it.  I have to figure out how to be in 20 seconds of complete silence, with nothing but my breath, and not end up in a puddle.  The Mindfulness instructor and my therapist both say "give yourself some grace".......... hahahaha...I am my own worst critic.. I truly don't even know what the fuck that means.  But I am attempting to learn.  That is the important part.  That and those pink fucking shoes...

Nine years.. truths and trauma

 Who ever would've thought we'd be celebrating her 9th birthday?  Not the million specialists we see...honestly, not even me.  We've been through so much in the past nine years it's crazy to even think about.  We've surpassed every hurdle the powers that be have thrown at us and come out smiling. Until recently..

We were told repeatedly before she was born that we will have to make some quick life/death decisions... it never happened... we were told when we first got custody at 11 months old "if she's still alive in 3 months call and schedule another appointment"... she has somehow always come through without us having to make any snap decisions... until September 19th... I will never forget when they gave her bedtime meds on the 18th, the day of her surgery, watching the pulse ox go down and down and down and sitting steadily around 85... alarming like crazy... I kept buzzing the nurse... she called respiratory therapy.. he sat with us for endless hours.  Doing treatments, stimulating her to breathe more, suctioning her because she couldn't cough.. listening to her lungs... he'd leave to care for another patient and come back.. for hours on end.  I held her hand, mindlessly talked and constantly questioned what was going on... in my heart I knew what was going on.  By about 5:30 am I was texting my husband.  She had thrown up blood and they were taking her for a chest x-ray.  We couldn't keep her oxygen levels in a safe range and she wouldn't keep an oxygen mask on.

By 9:30 am our NP from our Complex Care team showed up and usually it's a relatively quick visit but she stayed.. constantly checking Madilyn, talking to the respiratory therapist, going to find doctors and trying to keep me calm.  She had me checking how close my husband was to the hospital.  When I told her he was parking the car she backed me up against the wall and told me that in 30 seconds there was going to be a mass amount of people in the room.... reality set in.. Madilyn was dying... she couldn't breathe.  Her oxygen levels were down to 70 and nothing was working to bring them up.  Daddy and Goose arrived to swarms of people in blue jumpsuits, stretchers, portable lab and x-ray machines and a little girl desperately trying to breathe.... I'll never forget the moment that the Rapid Response Critical Care team member turned around and said "she's advanced directives... how far are you willing to go? You have 2 seconds..... she's blue"........ it was moments of autopilot... no intubation, no CPR,  no cardiac meds.. sedation with CPAP was the final decision.... and suddenly someone said PEP... that PEP treatment saved her life.... those repeated PEP treatments multiple times per day for the next 48 hours and high flow oxygen at 15 for hours upon hours... slowly weaning down for her to be able to maintain for a few hours on her own.  I didn't find out until later that those treatments can potentially explode their lungs... 

Honestly the 48 hours in the PICU is mostly a blur for me.  It was traumatic... our nurses were amazing and our night nurse, Art, was perfect for us... especially when Scott was gone home and her levels dropped and respiratory therapy was back for what felt like the millionth time and machines were beeping like crazy and I completely lost it.... like nervous breakdown kind of lost it... I was a sobbing puddle on the floor telling him that I didn't know if I could do this... he promised me I wouldn't do it alone... he would make sure of that...they upped her sleep meds so she would stop fighting everything and slowly she was able to maintain for longer and longer... Our day nurse Amy was equally great.. fighting with the doctors the first time they wanted to transfer her back to the other floor... she stood in the hallway very professional yet adamant when she told them "she's not ready, you'll lose her in between floors when she crashes".... not 15 minutes later it happened again.... I'm so thankful she fought for us....

I never want to relive that... but our reality says I will have to... I don't know how, so I've chosen to see a trauma therapist.  It was highly recommended by our medical team.  We are also going to see our Pulmonary doctor and find out how much more damage was done to her left lung.  They think it collapsed because she was under anesthesia way longer than she ever had been.. they think maybe she aspirated... I've always talked about how thick Madilyn's secretions/vomit are but she completely dumbfounded the respiratory therapy staff and the PICU staff... they were trying to suction her and all it would do it clog the suction machine.  They had to get it started and use the probe to make her vomit instead... it was terrifying...

It makes me question how tired her little body is getting... it makes my heart hurt....

It's got me going on autopilot 99% of the time because otherwise the flashbacks of things I blocked out keep coming back and it makes it difficult to function.  It has me over analyzing everything she does.

I am returning to work today... I don't know if I'm ready... one foot in front of the other and breathe is all I keep telling myself.....

I'll just keep praying to a God I'm not sure I believe in and keep wearing the pink fucking shoes...

Sass and sleep

 Go figure...it's bright and early on Saturday morning, the Sasshole is sleeping and I'm wide awake and have been for hours already.  We woke to her feeding pump beeping away at 5:3.0 am and once it was turned off, meds given, diaper changed and Doc McStuffin playing on the TV she went right back to sleep and momma's wide awake now.  I tried to go back to sleep but the smell of fresh brewed coffee and a million thoughts rolling around in my brain kept the sleep at bay.  It's weird to have a quiet morning... mornings where we/I are awake before Madilyn.  Thankfully they are becoming more normal than not.

We finally consented in June to have bone marrow testing done after much soul searching and  hours upon hours of conversations.  So many pros and cons... so many questions..... so much hope for answers and fear of none.  When the results came in after weeks of waiting our Hematology Doctor called me and said "I have great news! Madilyn's bone marrow testing came back normal! But wait, I also have really bad news.  Madilyn's bone marrow testing came back normal!"  Great news considering she fully expected to find Multiple Myeloma cancer and really bad news because we have blood issues and zero source.  Now we are left to possibly try treatments for symptoms and it's nothing but a guessing game....as always.

We've had massive issues that started last October after Madilyn was sick and they've just escalated since.  They landed us inpatient in early March because Madilyn was so escalated that I couldn't bring her down.  We've added Palliative care, Neurology and Pain Managment to our already extensive list of care providers just trying to make life more livable.  We've tried Reiki and have added to our extensive list of medications trying to bring a little calm to our crazy life.  We've done blood test after blood test and scan after scan trying to figure out what was going on.  We've had our physical therapist note increased shakiness and muscle weakness, OT and Speech have both noted her increasing lack of ability to visually track and we've seen a definite decrease in her ability to focus on anything.  The child that could sit for 30 minutes or more watching silly YouTube videos couldn't even focus long enough to get the foot rest up on the chair much less accomplish any task.  She was on the never ending path of destruction, sleeplessness and so angry that I didn't even know what to do anymore.  My mental health was hanging on by a thread.  She's been caught in vicious migraine cycles, they diagnosed seizure like activity, Polycythemia, Disruptive Behavior Disorder, Anxiety, Insomnia and Anxiety to her already mile long list of diagnosis since March.  Oh and don't forget the vomiting... it's ridiculous to say the least.  

Through all of this I have said over and over and over... You are missing something.. I've said it to all of our new docs and old.  I've said it to our Care Team a million times over.. I've cried, yelled and very calmly said.. you are missing something.  Some of the roads it has taken us down have left me absolutely terrified that she was going to die... when my sister came in March she saw a very quickly declining child.  My heart was so broken and my nerves completely fried.  I was honestly afraid to be alone with Madilyn because she has to strength of a full grown man in her little tiny body and doesn't hesitate to let me know how angry she is.  My friends have all been on-call to come running to the rescue.  

Several weeks ago I was at my breaking point thinking about my husband getting ready to go back to work (he's a teacher) and I had this nagging gut feeling that I have given voice to multiple times.  I reached out directly to our Endocrine doctor and asked the question... again..... could it be Madilyn's steroids causing the problem?  I've experienced the rage that comes with high dose steroids multiple times when dealing with my Degenerative Disc Disease and what we were seeing from her always brought roid rage to mind.  I've questioned it on numerous occasions and there has always been a million other things that had to be dealt with.  A million other reasons that "could be the source of her issues".  With a child like Madilyn providers more often than not have overlooked the simplest things due to her complexity.  It's not the first time we've seen it and I'm sure it won't be the last.  In the end we discovered that Madilyn's very necessary daily steroids were almost double the amount they should/could be.   

As soon as our Endocrine doctor told me that I immediately started to wean her doses.  It can/has to be a very slow process.  Her adrenal glands do not produce much needed cortisol and the steroids replace that and keep her alive.  Adrenal crisis can be fatal.  Sometimes symptoms can mimic the symptoms that led to needing the high doses to start with.  It's a tricky, complicated line we are walking and once again I am left to trusting my gut.  I'm happy to say we saw immediate results.  She's sleeping way better than momma is... she's no longer going in a million angry circles around the house slamming doors, drawers and anything else she can slam.  Her focus is coming back and our PT noted zero.... yes, ZERO shakiness or muscle weakness this past week and the absolute best for me was the day my friend was over for an afternoon in the pool and she actually heard Madilyn giggling.  We are seeing increasing glimpses of the happy, giggly little girl that we missed so incredibly much.  Don't get me wrong, she's still an opinionated Sasshole and definitely wants her way BUT it's in a "typical child" sass kind of way instead of an angry, abusive old person kind of way.....I'm sure that analogy will offend someone but oh well, it is what it is...  We are just over half way to our goal and we are very excited to see what life will be like once we get there! 

Even with all of the continuing medical stuff with the Sasshole we have had the best summer ever.  Thanks to some friends giving us a swimming pool and M receiving a HUGE playset from Make-a-Wish Wisconsin our back yard is turning into the oasis I wished for when we bought this house.  All that's missing is the hot tub.  We've had lots of pool days and lots of time with friends.  It's all been much needed therapy for my soul.  We may be playing in a blow up kiddie pool in the basement in January though because Madilyn thinks the pool should be part of every day life and it brings much needed calm to crazy days.  My original plan was to put a hot tub in the basement but when you look at what the reality is of doing that it's definitely not in our budget... I have however already figured out where one will go in the backyard and I'm saving my pennies to pay for it... someday.....

In the middle of everything else we added a new GI doctor.... I was so sad to have to switch doctor's in the beginning but have quickly learned that sometimes fresh eyes are what we needed.  We are super happy with M's weight and feed tolerance.... the GI doctor is happy with those too BUT she feels we shouldn't have to live with the volume of vomiting that has become our norm over the years.  Uncontrolled, behavioral, stress induced... all of the above...  We are going inpatient in mid-September to get a new feeding tube.  She currently had a combined G/J tube.  Part of it accesses her stomach and then there's a really long tube that goes through her stomach, into her intestines and down to her jejunum where she is fed.  Our GI doc feels we'd see great improvement without that long tube.  She feels that the majority of our vomiting is because that tube keep her pylorus (the opening from the stomach into her intestines) open and mostly blocked.  The tube going through her stomach causes constant irritation so her body is constantly producing vomit and trying to reject the tube.  So we are going in for a separate J-tube.  She'll have 2 buttons on her stomach instead of one and after the initial hell of the surgery hopefully we'll see some much needed relief.  I'd be a liar if I didn't say how hopeful and scared I am at the same time.  Hopeful for relief and terrified of not getting any.   Hopeful that the reward is bigger than the risk... only time will tell.  We are also attempting to schedule the EEG to check for seizures that they wanted to us to attempt at home for while we are inpatient instead.  I've gotten pretty good at the two procedures at once thing over the years so hopefully it works out and seizures are able to be ruled out. 

In the meantime we are just living life and going shopping for the Sasshole... because every girl needs a million pairs of pink fucking shoes...🩰  

Our new reality

Everywhere you look or listen right now is Covid 19.. corona virus.. social distancing.. wash your hands wash your hands wash your hands... stay home if you're sick...just stay home...

It's really nothing new for us.. it's been taken to drastic measures but it's how we live our life.  Everyone at our doctor's offices and Children's hospital love Madilyn's "bubble" when we go there.  For several years now we have used her weather cover for her stroller as her germ bubble when we are in places like that to protect her.  It's now her comfort zone... it's our reality.

Since New Year's we've been inpatient twice and to more doctor's and lab appointments than I can count at the moment.  We've had scans and more lab tests than ever searching for answers...  Hematology recently did 2 genetic tests searching for an answer to her blood problems.  The JAK2 Gene Mutation and the JAK2 Exon 12 Gene Mutation.... the nurse called me yesterday and said that both are negative... the next step they want to do is bone marrow testing.  We don't want to put Madilyn through bone marrow testing... at this point it's irrelevant because with all of the virus stuff going on our hospital is basically shut down other than emergencies.  None of our clinics are seeing patients like Madilyn because it's not an emergency.  Even if it was an emergency Madilyn would probably not be seen because we have Advanced Directives in place already.  They are doing everything they can to help us manage symptoms remotely and are in constant contact with us so that's a plus.

We've made some recent med changes and it's helping with sleep for now and we're working our way through a list of options to deal with her headaches until we can finally see Pain Management in June (hopefully).  We were referred to Neurology and with the current situation I'm not sure when that will happen.  We've also started using CBD ointment to help with the pain in her feet, back and legs and it's helping.   The good news is that with these things in place and with all the help home with us the abuse is greatly reduced and I always have someone here for immediate intervention so it's very livable right now.  The Sasshole is super excited to have everyone home too... constant entertainment for her... and relief for me.  Now if it would just be warm enough to get out in the stroller or on the deck that would be amazing!

Regardless of other people's opinions of the virus and steps being taken... it's how we would be living either way so I just scroll right on by... we need to remember to be kind to one another.. reach out to our loved ones and practice social distancing and great personal hygiene.. I went to the grocery store yesterday and as I was spraying my cart with my hand sanitizer I noticed a woman that was trying to figure out what to do because they were out of the wipes so I kept my distance from her but sprayed her cart too.. it's the little things....  I was not so kind to the woman in the produce department shopping that was visibly sick and not covering her mouth to cough though.. or the guy that was with her that wasn't any nicer.(I won't even get into the conversation they were very loudly having) complete disregard for anyone else..I told them how ignorant I thought they were (from a safe distance) and that she could at least use some common sense and cough into her elbow and cover her fucking mouth... she didn't care.. she thought it was funny... people like her are why shit like this goes on...  use some common sense people... please....

Life for most people is drastically changing right now and we have very little control over it... my only suggestion is to learn to live peacefully... pick one project per day and tackle it... move your body, there's tons of free videos out there and I shared some on my Facebook page).. drink your water...eat healthy (grocery stores are NOT closing)... don't hoard toilet paper or food.... and breathe... play a game with your family.. read a book... life will be back to chaos quicker than shit so just live in the moment.

I had an appointment scheduled for almost 2 months prior to all the virus stuff and contemplated not keeping it but I'm happy I did... I was one of his last appointments before the state shut them down for social distancing... I'm so thankful I kept it... it's Madilyn's very first pair of pink fucking shoes......