Braeden's Birthday - Unpacking our experience a year later

Hi Friends - I started writing this post on Braeden's actual birthday, and to be honest have been distracted multiple times so I am finally here to finish it! 

Braeden turned ONE today, how fast this past year went! I didn't want to post a novel on FB, so why not a blog!?

I took the day off to spend at home with Braeden for a few reasons: 

1. He is SO MUCH FUN right now! Crawling everywhere, learning all the words and sign language, turns all the pages of his books.  

2. I honestly wasn't sure how my emotions might present themselves. 

If you haven't been along on our journey so far, here's the tea: I had a wonderful pregnancy. I felt amazing, all my ultrasounds were superb, made it to 39 weeks without so much as a blip. Then, on 4.13 during one of my non stress tests, Braeden's heart rate was giving us a run for our money. It would be in the 180's and all of a sudden dip to the low 100's for no reason. This was a red flag for my OB, and she sent me straight to the Hospital to be induced. I remember asking her what the issue could be but she wasn't sure. It could be any number of things, the most common being his umbilical cord wrapped around his neck. 

B made his appearance after 3.5 hours of pushing and a vacuum assisted delivery.

This is the moment everything changed. Braeden was not crying and due to the reaction of the approximately 15 medical professionals in the room with my numb legs still in stirrups we knew something was wrong. They didn't set him on my chest immediately like our nurse promised. Braeden was making some noises but it sounded like he was gasping for air.  They were whispering in hushed voices in the corner. The nurse that was with us during labor came back over and told us we could hold Braeden for about 30 seconds but they needed to take him right away for testing. I remember looking at him, saying "Hi Braeden!" and having him look back at me, hearing the sound of my voice. This was the tiniest ray of sunshine for me while we had to wait for answers. 

The most exciting day of our life turned into a nightmare. Josh and I spent an agonizing 4 hours alone in our delivery room waiting for news from the team is Braeden was going to be ok. At one point at 4:30 AM (2 hours after he was delivered) I asked a nurse if she could give me any information, would he live? She responded "I don't know". 

At around 6:00 AM, we spoke to a Pediatric Cardiologist from AmFam Childrens/UW who said Braeden would be ok, but he was born with a Congenital Heart Defect called Ebstein's Anomaly. It's a rare defect of the tricuspid valve - the valve between the right atrium and right ventricle chambers of the heart. because his valve doesn't close fully, deoxygenated blood flows back into the body which can be dangerous. Braeden's heart is enlarged and his atrium is significantly larger than his atrium. He would not need immediate surgery, but he would start seeing a pediatric cardiologist. 

I had a flood of thoughts after that conversation - first being what is a congenital heart defect? Did I do something wrong during my pregnancy? What do we do next? Why is this happening to us? 

I immediately started researching EA and surgeons. I found out that there are two amazing surgeons in the United States - Dr. Dearani at Mayo Clinic in Rochester, and Dr. De Silva at UPMC Childrens in Pittsburgh. I joined facebook groups, started asking about best resources. We were given a package from Conquering CHD, and it was comforting to know we had that information. 

Congenital Heart Disease is the most common birth defect. How could I not know anything about the most common birth defect? It's 60 times more prevalent than childhood cancer. We have a long road ahead of us, but we are here to help support our sweet little heart warrior through this lifelong journey. 

April 29th, 2021

 A year ago today, Braeden was in the NICU fighting for his life. 

I am processing my feelings considerably well today, but I'm not sure if I ever fully shared the full story of what happened to Braeden. The lowest points that Josh and I were trying to navigate while staying strong for our sweet baby boy.

Braeden was in the NICU for a total of 36 days. On day 14, April 28th, we were discussing taking Braeden home with his pediatric cardiologist and the NICU staff. He had gotten his PICC line out that day around 5:00 PM, and things were looking positive!

The morning of April 29th, at 2:30 AM, Josh got a phone call from the NICU. Braeden's oxygen saturations were really low, between 40% - 60%. He was on maximum wall oxygen but it wasn't improving his situation, so the staff switched to Nitric Oxide. As you can imagine - we weren't able to fall asleep again. We got another call at 4:45 AM letting us know that Braeden stopped breathing and they had to do chest compressions on him. Then another call an hour or so later letting us know that he had stopped breathing again, and had to do chest compressions a second time. The staff said it wasn't urgent for us to be there, and we felt helpless. The staff at that time decided to intubate him, so he was on a vent for a period of time. That was incredibly difficult to see. We took no pictures that day.

They started running tests: testing for viruses like RSV, blood tests to determine if there was a metabolic disorder. The virus screens all came back negative which was a relief. They did an ultrasound of his head and abdomen. We were at the hospital from about 6:00 AM - 5:00 PM on the 29th - they extubated him after he began showing some signs of improved breathing and saturations and I got to hold him for a few minutes. He was so sleepy and we decided to go home too - it was a super exhausting day with no answers as to what could be going on.

We get another call the morning of April 30th, about 2:30 AM. His oxygen levels were dipping low again and they intubated him for a second time within 24 hours. They ordered a number of metabolic tests, another stomach ultrasound, a head MRI and an hooked up to an EEG, as he began having seizures. The metabolic tests would take weeks for results. We were told some metabolic disorders aren't treatable. 

After the MRI, we found out that he had a blood clot that traveled through his heart to his brain. He had a stroke and suffered three brain bleeds. They needed to do more metabolic testing, and he needed a blood transfusion because of how much blood they took from him for testing, plus some he lost due to the still unexplained issues. At this point, Braeden was in critical condition. His ranges for everything were out of control. His sodium levels were dangerously low, blood sugar was over 400, his blood gasses were terribly imbalanced. 

He needed a blood transfusion badly; he also needed a central line placed in a main artery. One of 4 pediatric surgeons in Madison had to place the line, and at about 10:00 PM he was able to get the blood transfusion. 

We FINALLY had an answer of what was wrong after the abdominal ultrasound: He had something called NEC. Necrotizing enterocolitis. This usually presents in premature, formula fed babies. Braeden was not premature, and he was on breastmilk. NEC is scary as hell. Thankfully, they caught it early and even before diagnosis started him on 3 different antibiotics just in case. 

The 5 days from April 28th - May 3rd were truly the most terrifying time in our lives. We didn't know if Braeden would survive. Seeing him hooked up to all the machines, cords, tubes... seeing his tiny, bruised body from all the needles (including one IV that went into his head - newborn veins basically don't exist)... that time was an insane wave of emotions and basically being a zombie.

NICU PTSD is real. I didn't sleep well for months after that. The beeping monitors, the changes in his oxygen saturation, the NG feeding tubes, but man Braeden is a fighter. He showed us all he was not going anywhere and continues to be the brightest light in our day <3 

These two first pictures were taken after B had his EEG head sensors removed, and after he was extubated again. Third pic is him looking at us like what he just went through was nothin'. Our little spitfire!! 

Grateful, Thankful, Blessed

Happy Thanksgiving! 

I haven’t written in over a year and it feels strange and amazing, and also like no time has passed at all. 

I always feel so grateful and thankful for my family and friends and this year it’s increased tenfold. We would not have been able to get through this year without your love, support, calls, messages, prayers, food and visits. I hope you all know how much each and every one of you means to us 🧡 

I’m incredibly thankful and grateful for our son, Braeden. What a blessing he is in our lives! You’d never know he spent over a month in the NICU, initially admitted for his CHD Ebstein’s Anomoly. He had a longer stay because he developed NEC, seizures, a brain bleed, a stroke, needed a blood transfusion, stopped breathing twice. It was a LOT. How absolutely lucky we are that he’s the strongest little fighter, and the absolute happiest, goofiest baby! 

I’m thankful for my husband, especially during our time with B in the NICU. He was strong for me when I needed him, and I did the same when he needed me. His hair is amazing - the man bun is looking real good these days! He’s grounded and my voice of reason and sounding board. And so handsome to boot! 

I’m thankful for our dog Tully, she’s so gentle with Braeden. She’s taken a backseat since baby B has been home and while it’s inevitable, it does make me feel guilty. So we celebrate her as often as we can! 

Im thankful for the community we live in, and all our neighbors who’ve turned into friends. All the laughs, wine nights, events and fires (don’t worry, it’s just solo stove) 🔥 

I’m incredibly grateful to our care team while we were in the NICU. They celebrated all the little wins with us, shared hugs and support when we got hard news and overall just helped keep us sane. 

I had a chance to read a note from a friend today about being truly intentional in your daily life, and I have tried hard since earlier this year and will continue to be more intentional every day, share gratitude and pay forward all the love and support you’ve all shown to us this past year. 

Reflection

 Today is infant & pregnancy loss remembrance day. no matter what, I will always celebrate my tiny "what if" every day, especially today. 

It's different than last year; last year, everything was so fresh and I really didn't think I would be OK again. Finding out my baby didn't have a heartbeat at our first ultrasound was the hardest thing I've had to accept. It took away all my joy and hope. I finally got in touch with a therapist because I needed help processing the extraordinary empty, isolated feeling I had. 

I was so happy that Color Street came out with a set this year to honor infant & pregnancy loss, called Never Forgotten. Everyone grieves differently, but this set is so meaningful to so many, and I've been able to connect with so many more ladies about their stories. Wearing this set proudly today <3 To all the other parents who have experienced loss: I send you all the love, especially today. I see you. I feel you. 

Pictured: the book I received at my ultrasound and a copy of the form to release the remains of my baby to the hospital so pathology could test them. I chose to take the "pill" to pass the remains of my child as I was advised it was safer than a D&C (operation). I wish I would have done the D&C, because I was not prepared for the 24 hours I experienced following the pill. It induces labor, and I had contractions for 6 hours. It was the most traumatizing and painful day of my life. 

 

Reality Bites

Sometimes you just need a good 90's movie title to be the hero of the day, because I'm not coming up with anything clever today.

The last year has been a roller coaster of emotions. Like every day I wanted to wear a pin with this picture on it, because so. many. emotions. The excellent, the awful, the in-between emotions. All of the emotions. 

About a year ago, I went off my MS medication, Gilenya so we could start a family and give Tully a sibling <3 Gilenya is a medication used to treat MS, aka Fingolimod. This med stops the passing of certain white blood cells through the blood/brain barrier into the CNS (Central Nervous System) to prevent further de-mylentaion on the nerves. 

Gilenya was off the table for trying to conceive. Along with pretty much any DMD. Long story short, I had an MRI (baseline) in June 2019 to check on disease activity. It showed several new flares. Typically normal in folks stopping Gilenya, so not a huge concern. 

It also happens I got pregnant in June 2019!! I was so excited, our window to get pregnant and not have to worry about relapses was here! We were going to have a tiny human. 

Fast forward to August 5th: our ultrasound day. I was bursting at the seems with joy, so excited to show off the tiny human growing inside me to my husband so he could see too! Well the ultrasound showed tiny baby B had no heartbeat. It was a failed pregnancy, aka miscarriage. 

We started to try again in December... January was tough with being away during fertile days due to training for my new job. February brought so much anxiety because of the scheduled MRI. 

Finally MRI day comes. It's a day I've been dreading for a while, 3 hours in a tiny tube with the most magnetic magnets circling me. Why does it have to be so LOUD???

Today, I had the results read (and shown) to me. It's so strange seeing all the weird, wavy layers of your brain and spinal cord in black and white and cloudy images. The cloudy images are the ones you don't want to see... and I have plenty of those, both new and old. The new lesions (that's what the cool kids call them...) are the ones that scare me. Terrify me. 

Today was the first time my provider said adoption and surrogacy might be the best options for us. It's not that we can't keep trying, but the longer I'm off any medication, the more likely I am to have an attack which is scary. I've had three really scary attacks in the past and have been lucky enough to recover from them, but there's always a chance recovery won't happen. So here we are, time is my greatest enemy right now. Being 34, continuing to not be on medication. So I have to make sure I'm as healthy as possible for our future family. And if we don't fix it ASAP... The distant future might not be so bright. 

We are going to keep trying to add to our family organically for the foreseeable future, but will keep options open. I'll be starting a new DMD soon, an infusion that has some studies in pregnancy, and has shown it's relatively safe. 

My body has been failing me for years, and it's beyond frustrating. Send positive vibes our way <3 <3 <3 

Empty Glass

2019 has been one emotional roller coaster after another. It started off amazingly! We spent time with good friends in Las Vegas for the New Year. Then again for the most amazing wedding in Mexico in February. 

We started the journey to add to our family in May - I had been off my MS medication for three months. I thought I knew what I was in for, but the reality of this year has cut into my soul deeper than I thought possible. How tough was I?!?! Someone that could handle anything thrown at her. My friends and family continuously tell me how strong I am. 

But this year has cracked my foundation. I'm not strong. I'm not undefeated. I'm not tough. Let's talk about it. 

New MS lesion activity. The first active lesion in 4 years. 

Pregnancy. Exciting and terrifying! 

Miscarriage. 

Decision time: 4 options.

1. Continue to try without DMD 
2. Continue to try with a low risk DMD 
3. Continue to try with a high risk DMD that will better regulate MS symptoms and progress but potentially cause injury to myself and fetus
4. Stop trying and continue with previous medication

All while also considering how many children we want to have - it may be just one. Not a decision that needs to be made today, but should be soon. No pressure. 

So, let's talk about the photo. It's the drug I am considering right now, if I decide to go back on a DMD. Copaxone is a small synthetic protein, made to mimic a fragment of myelin. It consists of four amino acids, the building blocks of proteins, that are found in myelin.

It's the safest DMD to start taking while trying to conceive. Also. WTF is a DMD right?! DMD = Disease Modifying Drug. 

In the smallest amount of time, we have our entire future to decide. Give us all the good juju. My glass is empty, and it needs some good vibes <3

Recovery

It's been about a month since the miscarriage. I'm still unsure on how to feel, so let's blog about it. Writing is one of my favorite things and helps me get my feelings out.

The first week following the loss was the hardest of my life. The entire process of being pregnant was so exciting, then all of a sudden it's not... It's so confusing. After the doctor tells you the news, you have 3 options. I picked the second one... and all of a sudden, I'm carrying a dead fetus for a week before we can separate. Bonding with something no longer alive, but something I am so scared to lose. Walking in a deep fog every single day like a zombie. Pretending to be happy and OK when I was severely NOT OK.  Actually having the miscarriage was painful both physically and emotionally. They never prepared me for the fact I'd have contractions. Contractions. For two hours. 

During that week, I questioned everything. Is the Doctor sure the baby didn't have a heartbeat? What did I do to deserve this? Should I have been a nicer person? Did I do something wrong? I've already had to endure so much as a young women. Why is this happening to me? 

Let's talk about something: Honesty. This is super difficult to write about but I feel like it'll help me and help others. Especially because I don't consider myself to be overly sensitive. 

I love the fact that so many of my friends and family have wonderful tiny humans in their lives. I love hearing stories about their milestones. I love you and your families. 

But it is not easy to hear about all of this going through such a loss. Every mention of your amazing child reminds me of the tiny human I saw on that sad ultrasound that I will never get to meet. Every first... when they roll over. Their first step. Every time they wake you up in the middle of the night crying.

To my very core, I believe that we will get to have the experience of having a family. No matter how it shakes out, we will get there. Don't stop sharing your stories. My replies will become longer than just heart emojis <3 and "Awe". 

Grief

Last week Monday, we were preparing to go in for our first prenatal appointment. I was 9.5 weeks pregnant. We had found out just about a month earlier and our daydreams were going wild: baby names! nursery themes! announcing to family and friends! daycares!

I was uncomfortable. I had every pregnancy symptom you can imagine, outside of nausea. How thankful I was to feel the start of this tiny human growing inside me. We did it! 

My journey has not been an easy one. I have Multiple Sclerosis and this makes planning a family very unsexy and very schedule based. Go off medication for a minimum of two months before you start to try. We were in Mexico earlier this year when I went off my medication, so two month minimum per my neurologist, three month minimum per my OB to make sure Zika would not be a threat. Planning so heavily is not sexy but we tried to make it fun.

That's when I got the first blow. I went in for an MRI to monitor my MS progress. For the first time in 3 years, I had new disease activity. The race to get pregnant was on. 

It happened quickly and I felt so grateful and thankful that we did for a multitude of reasons! Firstly, because I was going to be a mom! We are going to start a family! Secondly, because MS goes into remission with pregnancy. So I no longer had to worry about getting "sick" until after the baby, which was common and I could be more prepared. 

We started imaging our new life - and I started a ridiculous pinterest baby board! I scheduled the first appointment with my doctor after we got the positive pregnancy test. I took two just to be sure! 

Fast forward to Monday August 5th. Josh and I go in for the first appointment. I was nervous and excited! We were finally going to see our baby! I was so excited to see that little flutter of a heartbeat. We stare anxiously at the screen waiting for the show to start. She is looking, looking... and finally said, "We must be off on timing of conception. I see something but it looks smaller than what I'd expect" 

She sent us to imaging. After two more ultrasounds, we finally got to see our little one. It was so tiny, but I can't tell based on a screen what the normal size should be. There wasn't movement. I thought maybe... just maybe it was still too early. So I asked the ultrasound tech if it was too early to see a heartbeat. She said "I'll have the doctor explain everything to you." 

We sat for an hour for the OB to read all the ultrasounds. She finally came in and said she had some news. My heart is racing, my palms are sweaty and I slightly feel like I am going to be sick. She told us "At this point in the pregnancy, there should be a visible heartbeat. And there is not. This is a miscarriage."

It suddenly felt like all the oxygen left the room. I was in shock. I couldn't breath. I didn't believe her. The next 30 minutes were fucking horrible. I wanted to just be at home in my bed. 

Apparently, miscarriage is common. One in 4 women will have a miscarriage in the first trimester. But why do I feel so alone in this? 

I've gone through a few stages of grief. Quite noticeably. Denial was strong but brief - it came and left while I was at the doctor's office. Are you sure the baby isn't alive? How could I let my husband down like this? Now I'm angry. I am so angry that anyone has to go through this. I am angry because I will most likely experience an aggressive MS relapse not once, but twice because of the miscarriage. I am angry because these are three months we won't be able to try starting a family. I am angry at my selfish thoughts. I am not a depressed person, but I can feel that my world is just not the same right now. I don't feel like myself and I am not sure how I can get back to that point. I feel like I'm putting on this fake smile and act. 

I am also scared. I still have a baby inside of me. This tiny bit of tissue is still a part of me. I'm scared to lose it but at the same time I can't wait until it's gone so the reminder isn't constantly in my head. I am ready for relief and the ability to start the process of moving on.

Josh and I are beyond lucky because our support network has really been there for us. Every kind word and gesture has not gone unnoticed. It has helped us along in our healing process, which isn't over yet but it feels much more in reach. Thank you to everyone. We are so lucky to know each of you. 

I want to have this conversation and talk about it so others don't feel so alone. Talking about this has gotten me through the worst week. I know things will get better. It is not a pretty conversation and there will be more tears. Or maybe the tears won't come. If you can be a shoulder or listening ear, do it immediately. You have no idea how much it will mean to someone to just listen. 

Multiple Sclerosis: My unwanted life partner

It's my favorite time of year! I love The holidays - Thanksgiving, Christmas, New Years. My wonderful husband and I are hosting Thanksgiving this year for our families in our new home. I couldn't be more excited to host everyone and enjoy a wonderful meal. 

I'm thankful for so many things - Josh, our dog Tully, our family and friends, our beautiful planet, red wine, heels. I could go on! But there's one thing I'm not thankful for: having MS. 

Every year I rally my family and friends to raise funds for MS research. There is no cure for this disease. It also happens to be one of those invisible diseases - so while I look great on the outside (thanks in advance for all the compliments ;) ), there are things going on in my body that are making me crazy at any given time. 

Last Tuesday, I started experiencing my third major exacerbation, or attack. This attack has been completely different from anything I have experienced with MS so far. Typically I deal with fatigue - not just being tired, but physically hurting because I can't concentrate on a task for more than 30 seconds. I also deal with tingling and numbness. My first attack happened in 2009 when half of my face went numb for about 3 weeks. My second attack happened in 2012, my body went numb from the legs down. 

This third attack is completely different. It's pain. Last Tuesday, my right arm started to ache. I brushed it off as sleeping on it poorly and went about my day. When I woke up on Wednesday, it was more painful. I took some ibuprofen. It didn't help. I started researching pain and MS. I wasn't quite convinced it could be related. After waking up on Thursday and the severity of the pain was a 6 out of 10. It was getting worse. By Friday, it was an 8 and accompanied by a burning sensation in my arm. I slept 2 hours Friday night. I spent my time researching pain and MS and what kinds of pain are associated. I've self diagnosed myself with a type of pain called Dysesthesia. I don't know how to pronounce it, but the definition is exactly what I'm experiencing: an abnormal burning or aching sensation. We'll see what my neurologist has to say :)

Pain fucks up your quality of life. I haven't been in a very good mood this weekend. I've smiled, I've laughed, I've finished painting my newest DIY project: a dresser. But I feel like throwing up because I am in so much pain. I also feel like I might spend the rest of the day crying. I bought icyhot yesterday as a temporary solution until I see my Neurologist. I'm also making an appointment with an acupuncturist. 

I am not thankful for having this BS disease. I try to stay positive and strong. This attack, I am not strong. I am not positive. I am really, really pissed off. But having MS has made me thoughtful and empathetic to everyone out there in the world. Everyone is fighting a battle you don't know about at any given time. 

Oh my pod! Floating!

I am always up for new challenges and trying new things. So when my sister in law told me about a year ago about this new craze called floating, I thought it would be fun and relaxing! Basically you float in a warm tub of water that has at least 1,000 lbs of salt dissolved into it. Why did it take me almost a year to try it out?

At the time, I was planning a wedding. Then we moved, went on a mini-moon, adopted a dog, went on our honeymoon, started a new job and started looking at houses. It's been a wonderful year and things have finally started to slow down a bit, so I started looking into floating again! Bought a Groupon and scheduled my float. Let me break it down for you, and then I'll cover what I liked and didn't like.

The Prep: 
I arrived 15 minutes early as requested to get a tour of the facility and watch a video about floating. This covers the do's and don't of floating. It's pretty self explanatory - don't go to the bathroom in the float pod, float on your back not on your side/stomach, don't get water in your eyes.. etc. 

The facility I went to has 3 floating rooms. Two of the rooms are equipped with pods, or isolation tanks with giant filters attached to them. One is equipped with a large tub. 

After the tour, I was escorted to my floating room. I was using one of the pods. The room was dimly lit, and soothing music (which you get to pick) was playing in the background. I chose a meditation track and it was fabulous!

So before you get into the tub, you have the option of wearing silicone earplugs and I opted to do that. After a quick rinse in the shower, into the tub I went. 

The Pod:
I stepped into the water and immediately felt the buoyancy! It's a strange feeling and I imagine the only comparison is to that of being in the dead sea. Which I haven't been, just a theory. I left the top of my tank open about 6 inches. I'm not claustrophobic, it simply helped me relax. I also opted to keep the tub light on during my float. 

I finally situate myself to a floating position I was comfortable with and my mind is full of thoughts and questions. Why do I keep hitting the sides of the tub? I love this relaxing music. So... in here for 60 minutes, that's a really long time. I'll be honest, it was uncomfortable for the first 15 minutes. I started to focus on my breathing, and the rest of the time was really nice! It was a new and unique way to meditate and relax. 

Before I knew it, my 60 minutes was up! I reluctantly got out and hopped in the shower to get all the salt off. Once I was read to leave the room, I went to the prep room and dried my hair and had a cup of vanilla rooibos tea. 

The woman who owns the business I went to is extremely knowledgeable and it was nice to ask her some of the questions I had after the float. I would certainly consider floating again!

So on to what I liked - and didn't like. 

• It was a new way to meditate and relax for an hour. Yoga has the same calming effect on me. I think these two together will be a great way to stay balanced and clear minded.  
• The owner was very knowledgeable and was able to answer my questions
• Shampoo, conditioner and body wash is provided. Though, it's basic and I would recommend bringing your own. 
• My biggest concern: the pod is not drained and sanitized between floats. It is triple filtered. They say the salinity of the water is enough to ensure no bacterial growth and even so the triple filter would kill anything, but I'm still a bit skeptical. But, essentially public pools are WAY more disgusting and we've all gone in one of those!

I would absolutely go again. They handed out a welcome bag with additional information about The Float Factor, a small bag of Epsom salt and a tea sample. So, have you tried the floating craze? What are your thoughts?!

bikes, bikes, bikes

The weather in Wisconsin tonight is perfection. As soon as I got home from work I changed into my biking outfit, filled up my water bottle, snapped on the helmet and off I was! Delafield has amazing biking trails. Scenic, peaceful and bustling at the same time, and plenty of paved miles to explore. Here's my outfit: 

The fanny pack is obviously my favorite part. Tonight during my ride I was thinking about a few things... 

• My wedding. Getting married in two months, so excited!!!
• Eyelash extensions are literally the worst when you're biking @ 16 mph
• The fantasy-land puketastic bachelorette is on tonight. Do I watch Jordan Rodgers or Netflix and chill?
• What is Netflix and chill?! 

But, more seriously, I had some major concerns during the bike ride. 

First up: people are @$$hats when it comes to stopping for pedestrians/bikers/dog walkers. I mean there are clear signs that say yield for pedestrians in crosswalks. What the F, I'm just trying to be my healthiest me and all you drivers out there are trying to kill me when I'm simply trying to cross the road? Don't be one of those people. Stop for the bikers! 

Next, I'm looking for some advice. We'll see who can help me out! I need a good pair of sunglasses, specifically a pair that's good for biking. My current fave sunglasses: a pair of amazing aviators. But they're not exactly made for biking - bugs are constantly flying through the middle part into my eyes. Share some good brands with me. Huge plus if they're polarized. 

That's it for tonight! 

Xoxo, B

I'm back, b*tches

Forgive me, blogger, for I haven't blogged. It's been almost three years since my last entry. We have TONS to catch up on.

So let's talk about what's been going on since July, 11th 2013. I've done a million things. No, literally, I have. Probably more. Here are the important things:

I bought a lot of shoes
Went to Mexico (twice!!)
Moved in with my boyfriend - we live in Delafield and we're snobs
Took an amazing trip with my sister to Door County, and I cannot WAIT for our next trip!
GOT ENGAGED to the love of my life <3 (best day of my life!!!)
Took a girls trip to NYC
Stood up in my younger brothers wedding
Took a trip to Boston with my fiance

It's been a wonderful past few years! I haven't had any serious issues with my MS which is amazing!!! But, some things did change. One - my medication: in November of 2014 I started taking Gilenya. It's a pill. I take it every day, which is a much better option than taking a shot every other day. The shot became so painful and I the bruises it gave me? Ew, stop. The pill is much easier. I still have really tough days... sometimes I find it hard to hold a conversation with someone. It's a new issue I have encountered. While I know exactly what I want to say, processing the thought through my brain and getting it out isn't always easy. I've noticed this in several conversations lately, and simply hope no one else does.

Let's stay in touch! I'll be back soon

xoxo, B

I'll have another...

My blog has been dying out lately, and I don't like it! Though, I feel it's been so spontaneous with little meaning to my readers except for the fact to keep you in the loop on my life and everything fabulous about it. It's mostly just fun for me, but I like to keep everyone as entertained as possible.

That said... I am going to be taking another blog in a different direction, but keep this one here for my nearest and dearest ones that I don't bore too much! XO you know who you are, I know who you are and I love you more than anything else. You all have had an amazing impact on my life and shaped me to be the person I am today... Confident, loving, friendly, sophisticated, crazy and loyal. It's taken years to mold me into the many things that I am, but I wouldn't change it for the world.

My next bold move is making me question a number of things. The last several months, I have been my biggest fan. Honestly, if you're not your own biggest fan, who is going to be? Anyways, enough about how conceited I am. I don't like questioning things. I'm a straight shooter, I know what I want... and then again now I am feeling that I am not so sure about it!. Yikes bikes.

Well, onto it. I'll keep you posted my loves. XO -B

How summer feels

Summer is my favorite season. There are many reasons why I love summer as much as I do... warm weather, sunny days on the beach, open toe shoes showing off hot pink polish, ice cream cones, teeny bikinis, sun hats, camping, swimming, reading magazines about the best trends of the year, ice cold beer on a bar patio with friends, ice cold beer on a boat, ice cold beer anywhere. 

That list could go on and on. Nothing beats summer. But more than anything all summer, nothing beats watching an amazing firework show light up the night sky over Lake Michigan. It just puts a smile on your face for a few minutes. 

As a child, I am sure I said something along the lines of "ooohhhhh look at the boom booms!" On second thought, probably not. Make sure you give yourself an opportunity to enjoy fireworks in the near future. #permasmile

Sh*t my friends say...

My friends are ridiculous. In a super amazing, hilarious way. In one night, the following 6 quotes came out of these women's mouths...

• I want to be roofied
• I want to be a dog so people buy things for me
• I like crack
• I'm a sloppy pen pal
• I think I should be polka... dot. Polka dot. 
• Penis sandwich

I'll be making a youtube vid in the same fashion as the "sh*t (insert specified group here) say" vids. 

ciao!

The Steroid effect

No - this is not about Ryan Braun. I have recently started keeping track, a la blog, of the first MS attack I've had since being diagnosed back in 2009. I have been pretty lucky that it's been almost three and a half years since a flare up has occurred. With MS - it's a waiting game. You never know when an attack will occur. There are ways to avoid on-setting an attack  though attacks ultimately will happen during the course of the disease. As long as you religiously follow your treatment (I'm on an interferon: Betaseron. See blog: http://bmilinski.blogspot.com/2012/08/hi-my-name-is-bridget-and-i-have-ms.html), avoid stress and extreme heat, stay healthy and exercise your chances of having a attack shrink.

This all started on January 25th, and since that time I've had a numb feeling spread from my toes all the way up to my thighs, in both legs. Think of the pins-and-needles feeling you get when your arm or leg falls asleep, and add the weight of 10 lb bricks to your feet. On top of it, my balance is completely off. I def look tipsy when I get up to mosey around my apartment/workplace. I wonder how many people think I've been drinking... ;)

I have been on a super crazy dose of Prednisone, which is a steroid that reduces inflammation and in turn should shorten the length and severity of the attack. The side effects are interesting - I have a ton of energy - and can you say water retention?!?! I have gone up at least a cup size and I'm afraid that someone is going to ask my due date when I'm in public.

More than anything, it's been annoying. Though I don't need help with my daily routine, I have slowed down since my legs take a little while to warm up. Even when they realize they need to carry me around all day, they give me a hard time... So I have used walls, railings, even chairs to steady myself if I feel like I may tip over :)

So I'll be wobbling my way around for the next couple weeks until I'm back to normal! If anyone knows where to get a super sweet cane let me know. I'll need a custom bedazzle job. 

What doesn't kill you makes you stronger

What a powerful statement. There are things in life that happen and make you think "why me"? If there is ever a time you start to think this, STOP it. Having a positive outlook in life is one of the best things available to you, and the best part is that you give yourself the option to have a really, really great outlook. Reach out to someone if you need a hand.

I define myself as a supremely optimistic person. It takes quite a blow to put me in a bad mood... but Saturday, I was in a bad mood. After 6 days of suffering from an exacerbation from my MS, I was fed up and heading to Walgreens to pick up an Rx because both my legs, up to my hips, had gone numb. Not the kind of numb that you can't move them. The kind of numb you feel when an arm (in this case my legs) fall asleep. So, you take one look at me and notice nothing - I can walk, I can drive, however I'm "numb". This is the first "attack" I've experienced since being diagnosed in 2009, so I am slightly freaking out.

Friday night, my Neurologist phoned in a interesting mix of steroids (to treat the attack), antacid (to treat the heartburn caused by the steroids) and sleeping pills (to help me sleep since the steroids give me more energy than I care for). Well, I'm standing in line at Walgreens pharmacy pick up, get to the counter and tell them I need to pick up the Rx. And the woman behind the counter says "We have nothing on file for you". I was a little astounded, had them check to see if they may have phoned it into another location - nope. Nothing. My doc had forgotten to phone it in, after twice verifying with me what treatment they were going to put me on. With all of this going on I get back in my car and have a quiet little hissy fit.

I got in touch with the doctor on call and an hour later I was equipped with too many pills and the energy of a 6 year old who ate way too much sugar and just got a puppy. Keep your fingers crossed that the 'roids are supposed to make things worse before they get better... I've now got cinder blocks for feet and horrible balance.

So, what's making you stronger today?

Sister/Sister

I am thankful that my parents decided to have a brood of Milinski kids. I love my family, though growing up we definitely experienced the normal growing pains - sibling rivalry, fights, pranks. As a young girl with two brothers, I was ecstatic when my parents told me they were having their fourth (and final) child, a little girl. I figured I could dress her in the same clothes my dolls wear, put barrettes in her hair and just really help my mom take care of her and make sure that she was always presentable.

I absolutely love all my siblings, but the bond between sisters is something different - I consider my sister my very best friend. I taught her how to put on make up; pick out a fabulous pair of jeans; love starbucks; walk in heels; pick out the best shade of lipstick. I share all my secrets with her, we swap gossip, go see ridiculous concerts together, chill with a bottle of wine, get crazy during a night out, grab a delish bite to eat, see a movie (we have seen every Saw movie together). I try and give her sound advice whenever I can, since I am older by a whopping 5 years - and clearly wiser. You know, lead by example. Make sure my life choices are wholesome and wise so she can look up to her big sister. Obvi this was, and continues to be, pretty easy. 

One of the best things about having a sister close to your age, and size.. and shoe size... is swapping clothes. When we were younger, this was often done without consent. I would try and throw together an outfit for a night out with my friends and realize that I am missing a key piece to that outfit - it was either in the wash because my sister snagged, or she physically had the item on her. So the wicked cycle of stealing clothes, accessories, shoes, make up would go on and on and on until I moved out and took all my rightful items with me. Somehow, moving across the country didn't even rid us of that problem. Now it's not as bad, but still happens, she has several of my clothing items. And I have several of hers. 

We are always completely honest with each other. Does this make me look like a crazy person? How about this color? What do you think about this music? Should I dye my hair (insert ridiculous color here)? Her feedback and opinions impact my choices, my opinions.

My sister is the absolute best. I always look forward to seeing her, talking to her, finding out what she has on her mind. She is such a compassionate and positive person, has solid morals and beliefs. I respect that in a person - know what you want, know who you are. Don't let others influence you negatively. Stand up for the little people. Help those who don't have the means to help themselves. 

Love you so much, sunshine sister! Can't wait to spend some time with you during the best year yet! xoxo your big sis B

Doodles

I thought of a few different topics to blog about since it's my first epic blog of 2013... summing up the last 12 months? Winter sports (or rather, summer sports with this heat)? Shoe collections? I don't want to disappoint any of my cult, or fair weathered, followers. So, I decided why not write about doodles. Doodles rarely disappoint.

It happens throughout the day. Whether it's a collection of different sized circles, arrows, animals, monsters, buildings - doodles happen. My go to doodle is a flower. It starts simple - but eventually gets embellished and ends up looking something like this.

You know you're a Diva when...

- you're filling out paperwork for insurance changes and have to ask a co-worker for a pen because the only one you have is pink.
- you go camping but stay in a hotel instead
- multiple friends mothers have commented on your extensive shoe collection. And they've never even seen your closet
- you buy a new lipstick because none of the other 6 shades in your purse match your eyeliner and clutch
- you own a scarf in just about every color of the rainbow. And also own skinny jeans in just as many colors
- you hire a maid to clean your apartment (it's already immaculate) because you're really sick of doing dishes