She lost her battle with cancer.

She lost her battle with cancer.

Why?  Why did she lose?  Cancer killed her so she is the loser?   I don’t get it.

I’m the first one to roll my eyes at PC terms.  Especially with all the craziness that’s going around now with the “take the word man out of these words” thing.  However, I do think we need another way to talk about people who have been unlucky enough to receive a cancer diagnosis.   As I have mentioned before, my husband and I both had a parent die from cancer, and both had an immediate relative survive cancer.   So I feel like I have the right to discuss this topic.

As everyone knows, it is breast cancer awareness month.  That’s good.  We need to talk about it, and talk about early diagnosis.   My problem is the way we talk about it.   We celebrate the breast cancer survivors the way we celebrate winners of the Super Bowl.   We show pretty, smiling celebrities putting on their brave face, and beating that cancer! We act like they are the victors and their survival is because of some special skill or attitude they possess.  But is it really?  And what does that say about the people killed by cancer?

First let’s talk about the widely use phrase “battling cancer.”    This phrase automatically assumes there is a winner and a loser.  Either the patient wins, or the cancer wins.   But I really don’t think that’s right.  My mom and dad both had cancer.  My dad died four months after his brain tumor came back.   We watched his mind and body deteriorate.  It was awful.   But why is he a loser?  He did not do anything wrong.  He did what the doctor said.  He just got unlucky.   So, on the other hand, my mom and my sister-in-law also had cancer.  They are survivors!!  They are winners!!  They fought that cancer!!  It sounds like they are champions!  So why are they winners and my dad and mother-in-law losers?  They aren’t winners.   My mom didn’t win.  She had several surgeries on her FACE.  She had half of her nose chopped off.   She is alive, but she didn’t fight any harder than my dad.   She is lucky to be alive, and we are lucky that she is alive, but I wouldn’t call her a winner.   She has to live with the fear of it coming back.  My sister-in-law had thyroid cancer.  She survived!! She is a big winner!!  But she didn’t win either.  For the rest of her life she will suffer with the consequences of thyroid removal, and is constantly adjusting and readjusting medications.  Yes, she is lucky to be alive, and yes, we are lucky she is alive, but I wouldn’t call that a win either.

In this politically correct world, I am surprised we don’t think about the families of those people who were killed by cancer.   How does it feel to them to celebrate the survivors?  As if those survivors are somehow better than their family member who has passed away?   It’s not cool and it’s not fair.

Why don’t we deal in reality instead of in fantasy?   In reality, cancer always sucks.   It sucks bad whether it kills you or not.   I am sure that almost everyone reading this is close to someone with cancer.   So, why don’t we show this side in the media?   Instead of interviewing a smiling celebrity, wearing her pink, talking about battling cancer, why don’t we show the dark side?  Why don’t we show her throwing up after chemo, or crying with her family?   If the media really wants to raise awareness, they should show us what cancer really is, and what it really does to the patients and to their families.   I bet you’d get a lot more women heading out to get a mammogram if you showed the pain, instead of the fake smile of a celebrity.

As you know, I have MS, and I read a lot about this “celebrity spokesperson” problem in the MS community.   While MSers (that’s our cool name) are glad Jack Osborne is raising awareness and money, they were kinda upset to see him dancing around on Dancing with the Stars.   It’s not Jack’s fault he could do that; there are lots of people with MS who could.  But there are also lots of people with MS who couldn’t.   And wouldn’t we do a better job or raising money for research and raising awareness if we showed the painful side of any disease?

 

Think about it.  Think about SPCA commercials.  I’ve seen plenty of commercials with a sad song playing the background of a video montage of sad, crying, starving puppies waiting to be adopted.  And it works! It pulls at our heartstrings and it shows the true situation of abandoned pets.

So, why can’t we do that with people?  Why doesn’t the media show the suffering caused by disease instead of covering it up with makeup, fake hair, fake lashes and pink?

 

 

“Isn’t this the best day ever!?”

“Isn’t this the best day ever!?”

Direct quote. From my four year old. Five out of seven days a week.

He said it tonight, but stopped to correct himself before he finished, “Mommy, isn’t this the best day. I mean night, ever!?”

I have to tell you my four year old is a lot like me. Everything is super amazing, or everything is super not. (My baby and my husband just chill; all the time). So, anyway, if you have spent any amount of significant time with this dude you have probably heard him say the words, “isn’t this the best day ever!?” Kids really know how to live in the moment. Sometimes, it can get pretty frustrating for grown ups to deal with a full on fit taking place because a little girl wants to play superheroes and “THERE ARE NO GIRL SUPERHEROES, MOMMY!!!!” So, that problem is the most important issue at that moment because nothing else matters. Annoying. But sometimes it’s amazing. Sometimes it’s amazing to see the world the way a four year old sees it.

So let’s talk about what constitutes the best day ever. You have your standards: Disney World, attending a Nationals game where your uncle snags you a ball, getting autographs at a pro soccer game with your aunt and uncle, Kings Dominion with your aunt and so on. Other times I can see why he thinks it’s the best day ever: Pajama party with his grandma, baking cookies with his aunt, checking out animals and planes with his aunt and cousin, getting ice cream TWICE IN ONE DAY! But then there are other days, and I think those days are the most special of all. The days he gets to go ride around with his dad in the pick up truck, or the drive home from his second day of church school, or even the day I let him watch the iPad more than usual.

You see, the other day I asked my son to dunk my Teddy Graham in icing ( it was a party…Dunkaroo anyone?) and he said, “Head or feet?” And I said, “What!?” So he repeated a couple of times until he had to explain to me, “Do you want me to dunk his head or his feet in the icing!?” Man. I wish I lived like that. I wish I was so focused on every moment that I paid attention to little details like that. I wish I didn’t worry, or plan, or think about my grocery list. I wish I just lived in the moment just like my son. I wish we all did and I wish we all could.

I hope my four year old continues to have best day evers for many many more years. I know that sometimes I will expect to hear those words. But sometimes I won’t. Sometimes it will be a regular morning, while he’s eating his regular Cheerios, watching his regular cartoons, in his regular pajamas and I’ll look up from my regular chair while feeding the baby and he’ll say it. And he’ll mean it.

“Mommy, isn’t this the best day ever?”

“Yeah, buddy. It is.”

FAQs

FAQs

Maybe it’s too soon for Frequently Asked Questions since I’ve been doing this blog for less than two weeks.  Maybe I should call this post AQs.  So, here there are, here are some AQ’s I’d thought I’d answer.  Some of them were asked by real life people, some of them I asked myself.

  1. How often are you going to blog?

As often I can.  I would like to do it every day, but I don’t think I have enough to say for that.   And also, the not feeling well factor comes into play sometimes, too.

  1. Why did you start a blog?

I really don’t know the answer to that.  I had been getting choked up at Walmart quite frequently (seriously), and that day I wrote Bad Luck or Big Blessings was pretty crazy.   All that stuff really happened, and I just walked in the house and started writing while tears we flowing.  The day before, my friend and I were discussing happiness, and how you have to look at what you have and be thankful for that.  After I wrote the piece, I Googled, “free blog” and then copied it and posted it.   After it was live I asked my husband to check it for typos and told him I would probably take it down.  He just said, “That was really good.  You should share it.”  (That’s a lot coming from my non emotional husband.)  So, I shared it.   The next day I woke up with that crazing feeling of, “OH my gosh, what did I just do?”  But, I’m already glad I did it.  My aunt called me and told me a lot of the health history in my Dad’s family that I didn’t know about, and several people reached out and told me it has helped them gain perspective in their own lives.

  1. What’s up with the start and stop situation?

I really want people to share the blog with their friends and family because I think that first post sends a good message.   I just needed to figure out the privacy situation.  Now that I have that figured out, we can share away.

  1. Why don’t you use the names of your friends and family?

Privacy.  But also I think leaving it open makes the blog more relatable.   When I say, my husband, you can picture and important person in your life, and when I say, my son, you can picture your son or nephew or neighbor.  It allows you to apply these stories to your own life.

  1. Do you still struggle with depression?

The short answer to that is, “no”.   However, like I have mentioned before, I am not a laid back person.  I go from happy to pissed in about 5 seconds.   I’ve heard all kinds of explanations for my depression.  The latest being that it was part of the MS.  I’m not sure I buy that.

  1. When did you receive your MS diagnosis?

This is too long and boring.  I’ll talk about this another day. J

Everything I need to know I learned from my baby

Everything I need to know I learned from my baby

Not my four-year old baby, my four-month old baby. My first baby screamed so much and so often that the only thing I learned from him was self control. I’m talking about my “normal” baby. And you guys don’t have to be a mom or a dad to be able to relate to the point I am going to make. If you have ever spent more than 10 minutes around a baby, you’re going to get my drift. If we look at the way a baby engages with us, and the way we engage with babies, we can learn a lot. We can learn how simple life can, and is supposed to, be…

Babies can’t talk and they love to listen.

Hang around a baby, and talk gibberish to him he will stare into your eyes, examine your mouth, hang on every noise you make, and, most importantly, smile. Best of all, he doesn’t say anything back to you, but there is never any doubt in your mind as to whether or not he heard you. You know that baby heard you, and loved every minute of hearing you. So let’s learn from that. I know you think I’m going to say put down your phone and listen. But it is more than that. We need to really listen, the way babies do. We need to focus on what our friend or husband or wife is really saying and not what we think he/she is saying. We need to at least act like we are glad to be listening. Because, I know we all want the same thing in return.

Babies don’t care how you look, or who you are, or what you can or can’t do.

I’ve never seen a baby judge. A baby will listen to anyone. A baby will smile at anyone. A baby will hug anyone. So should we.

Babies don’t need a three-ring circus for entertainment.

I’m guilty of this just as much as the next person. We always want more stuff! If I just had one more bottle of nail polish, then I will be satisfied. If I just had one more video game, then that will be enough. Just one more pair of shoes, just one more outfit, just one more blah blah blah. Give a baby one set of keys and they are happy for life.

We need to have unlimited compassion for others just as we have unlimited compassion for babies.

When a baby is crying, we don’t think, “Are you kidding me baby, are you seriously crying because you want to be picked up?? Do you even know what I am going through right now??? You have it so much better. Sorry. I’m not picking you up.” No, we don’t think that. We think, “Oh, poor baby, let me hug you and love you and make you feel better.” So maybe there isn’t one bottle of compassion or empathy available for us to use. Maybe we don’t have to sparingly use our compassion and empathy; making sure we save it for only the most devastating situations. Maybe, we can treat each other the way we treat babies, and have compassion for everyone. Whether someone is upset because their toilet clogged, or upset because their father is dying, the fact is, they are still upset. They are still that crying baby, and they still deserve our compassion. Most of the time.

A baby just wants love and that is just want we want to give him.

Go find a four-month old somewhere. Go find a baby and pick him up. Now, what was the first thing you instinctively did to that baby? I bet you kissed him on the forehead. That is our instinct, to love on babies. I can see in the eyes of my four-year old when I walk in the room holding the baby. He gets next to me and says, “I want to kiss him,” with an almost panicked look in his eyes. So I have to bend over, and let him kiss the baby. It happens every time. It is an instinct. And really, besides the basics, what else does a baby really need besides love? Nothing. What else does anyone really need besides love? Nothing. Nothing at all.

I could go on and on with this list; everything is better in a song, patience grasshopper, and so on. But I think you see my point.

So the next time I don’t feel like listening to my husband’s story, or the next time I’m distracted when my four-year old is showing me the way his plane works, I am going to take a breath, think about my baby, and give the other boys in my life the same love and attention as I give the baby. Because, according to my baby, life is pretty awesome right now. And really, it should be awesome for us all.

It’s the MS

It’s the MS

I think we all can relate to this one, because if you are over the age of 30, you most likely have something physically wrong with your body.   So this is about taking that issue for what it is, and letting go of the excuses.  Because, if you are like me, and I’m sure some of you are, you, at some point, either to yourself or others, blame some problems in your life on that medical issue.  But is it really that, or is it just an excuse?  I’m going to look at the excuses in my life…

(This first paragraph is going to be pretty boring, but I’m building a solid base for more entertainment to follow, so don’t give up!)

I have gotten pretty accustomed to blaming most of my problems on MS. But before I go into that, I’m going to give you a mini lesson on Multiple Sclerosis.   Basically, doctors think a person’s immune system attacks the myelin, or protective coating, of nerves in the brain and spinal cord.  This leaves scars, or lesions, making it difficult or impossible for those nerves to send the correct signals.  Most people with MS have lesions in their brain, or brain and spinal cord, but mine are only in my spinal cord.  That’s why you may know people with MS who seem symptom free.  Think about how big your brain is and how much of it we don’t use.  Then think of your thin spinal cord.  A mark on your brain may be (depending on where, obviously) less noticeable than a mark on your spine.  Therefore, my symptoms are more similar to someone with a spinal cord injury than someone with MS.  My obvious symptoms are absolutely a result of the disease.  I’ve gone over them before, but I’ll list them now so we are clear: burning skin, the weakness in my hands and legs, pins and needles, and heat sensitivity and the occasional flare up that causes more serious problems.

Now I will get on with it and take this time to go over the other things I like to blame on MS.

  1. My inability to lose my pregnancy weight.

I have convinced myself that the only reason I can’t lose this weight is because I am cursed with this dang disease!!!  I mean, I can’t do any cardio, and, on TOP of that, the medication I take CLEARLY warns, “May cause weight gain.”  So, obviously; not my fault. It’s the MS.  But, there is one other factor I may be ignoring, and today when I polished off half a bag of those dang addictive cookies chips from Target, I decided that yes, I may be eating for a family of four.  Sometimes.  Only when it involves cookie chips.  Or chocolate covered pretzel sticks.  Or any other sweet I can cram in my mouth and try to chew and swallow before my kid sees me.

  1. My fatigue.

Yes!  Fatigue.  People with MS say their fatigue is their number ONE debilitating symptom.  When I first read this fact, I (judgingly) thought, “What the heck, I WISH that was my most seriously problem, I mean, I have MS fatigue and that is def not the worst part.” But, I think they are talking about serious, can NOT get out of bed fatigue. Well, let me take you back to the brain and the spinal cord.  My MS is different.  Ok, so, maybe I don’t have that kind of fatigue.  If you ask my friends, they will tell you that I’ve never been a stay out all night kinda person.  I need my solid 8 hours, and I’ve needed it since I was healthy as a horse, not sick as a dog (A.N).  So, add a few years, a few pounds, a four year old, dealing with pain most days, and a four month old baby to the mix and maybe, just maybe, I’m just normal person tired.

  1. My memory.

This one is easy.  I can’t remember anything.  That’s why I keep my best friends from high school, college, and mom life around; so they can tell me about my life when I forget.  It’s not my fault I bounced that check or forgot to pay that bill! The MS is eating my brain and destroying my memory!!!  Only, it’s not. Eating. My. Brain. Oops.

  1. Sorry, I don’t feel good, I have to leave early.

The past two years, my MS has been the reason I have left every event I have attended.  But the other day, that changed, I was at a mom’s night, and I told my friend I was leaving. She asked if I felt bad.  I said no.  So then she said I had to stay.  Errrr,ahhhh,huhhh? What?  Ok.  So, that night, I really did stay, and I am glad I did.  However, I have always been an earlier turner inner than most of my friends.  Movie night in college, anyone?   Single Friday nights watching Suzie Orman?  Sweet! Now, I’m not saying I never went out and partied, but I am not, nor have I ever have been, the kind of person that needs or wants to be around people all the time. Now I’m warning you friends, sometimes, I still may leave early and hopefully, more often than not, it won’t be the MS.

So, in conclusion, sometimes excuses are okay, because sometimes it is the truth.  I had to hang out in the cold bathroom at the restaurant last night while my friends finished eating because I couldn’t hang on to my chopsticks.  But I think we will all be a lot happier, and maybe a lot more compassionate if we realize that we aren’t perfect, and we don’t always have to find something to blame.  We don’t always have to have an excuse for everything.   I’m a mom now, and my kids sucked out half my brains on the way out (hum, excuse), so I’m sure I would be paying bills late and dropping dishes on the floor without this dang disease.   Ok, let me try again.  We are all different.  We all have different personalities, and we all experience our aches and pains differently.  So, it’s okay if I want to leave early.  It’s okay if I have to call up my friend to remind me why I quit my first job. It’s also okay if I want to cram my face with sweets.  And it’s okay if I want to rest.  Because I don’t need an excuse to do any of those things, and neither do you.

“Kerrie, Why Are Your Shorts So Short?!”

“Kerrie, Why Are Your Shorts So Short?!”

Yes, I Know It’s a Wedding.  Yes, I Know We Are In a Church.  Yes, I Know I am Dressed Like a Hooker.

In the last few days, a certain photo of a women pumping gas showed up on my Facebook news-feed.  Not once, not twice, but several times.   Most of the comments were not nice.  Here is the picture:

IMG_2366

I immediately felt bad for the girl, because it brought back some memories of myself facing ridicule for what I wear.  So the focus of this post will be to think before you judge.  Now, if you shared this picture, and made fun of this girl, I am not judging you or blaming you.  In fact, a few years ago I would have thought, “Man, girl, where are the sweatpants that go with that hoodie?”  But now, I am just like that girl in the picture. And I want to share with you my experiences so maybe we can start giving people the benefit of the doubt before we make fun of them.

A few months ago I quickly popped out of my back door to tell my son and step-daughter it was time to come in for dinner.  Before I even got the words out, my neighbor yelled to me, “Kerrie, why are your shorts so short!?”  She yelled this in front of several kids and I was pretty embarrassed.  Now, this came from a women who knows all about what’s going on up in my body; she has even been kind enough to drive me to the ER or watch my kids while I drove myself to the ER.  So if she is saying this to me, how can I blame other people for wondering why I’m wearing such a tight dress at a bridal shower, or for staring at me as I walk into a funeral because my shirt is a little too low cut and my skirt is too short.

As you have probably figured out, I dress the way I do because of the way my skin feels.  Anything rubbing or moving on my skin either hurts or drives me crazy the way nails on a chalk board would drive you crazy.   So, my ideal outfit would be a tight fitting, soft tank top and yoga Capri pants.  However, in the summer, yoga pants are too hot so I have to wear shorts or skirts.   Shorts are usually not soft, so if I wear them they have to be high enough not to hit a very painful spot on my right thigh; same with the skirts.  Unfortunately, I have not found tight tank tops or soft, tight shirts that are not low cut, so my chest is exposed more than is appropriate for some occasions. (if you find some, please let me know!)

Most days, as I’ve said before, I don’t care what I wear.   But sometimes, I do, and sometimes I feel extremely self conscious.  I feel self conscious when I wear the same two outfits to every work event I attend because they are the only ones I can stand, I feel self conscious when I am at a wedding and I know I look inappropriate, I feel self conscious when I am out with a bunch of women, some of whom I don’t know, and I think I feel them staring at me.  But what other choice do I have?  My other choice would be to stay home, all the time, locked in my house, refusing to give myself and my sons the life we deserve.  So, I chose to face the stares (that may or may not be in my head).

Now I am going to share a couple of unflattering pictures of myself; pictures of a tight shirt too soon after I gave birth, and pictures of short skirts and short shorts.   But I want you to notice something in these pictures.  Notice that I am happy.

IMG_2381IMG_2382

Can we agree, now, that we need to give the lady at the gas pump a break?  We really need to start giving everyone the benefit of the doubt.   Don’t judge the lady wearing her pajamas at Walmart, because maybe she is on the way home from the hospital after being called to see a loved one in the middle of the night.  Don’t judge the lady at the mall with her belly hanging out of her shirt because maybe she just gave birth and doesn’t have the money to buy “in between clothes”.  Don’t judge the guy at work that wears the three same shirts every week because maybe is spending money on medical bills for his sick son.  And don’t judge the lady in a low cut top bending over at the children’s museum because maybe that’s the only way she will be able to get out of the house to spend time with her son.

If you have an similar experiences, please share!

 

It’s Infusion Day, It’s Infusion Day!

It’s Infusion Day, It’s Infusion Day!

In my head, I said that like Anna said, “It’s coronation day, it’s coronation day!”. Please tell me I don’t have to identify Anna. You know I’m talking about Frozen.

So once a month I drive about and hour and a half to get my Tysabri infusion. This will be my fourth infusion. So between that and the medicine I’ve been taking for neuropathic pain, I’ve been feeling a lot better these past few months. I’m here now and I’m writing this post on my phone so it’s going to be short. Talk about another reality check. Ninety percent (shout out to my friends who love my percent usage) of the people here are here for Chemo. But that is not what I want to talk about today. I want to talk about Catholic guilt.

One of my friends told me I have serious Catholic guilt issues and I think she is right. I feel guilty for all of the positive feedback I’ve received from this blog. Logically, that’s kinda crazy, right? But I just want to make sure I’m painting an accurate picture of my life. Yes, I’m happy. Yes, I’m thankful. Yes, I have a great husband. But just because I have a happy life, doesn’t mean I always love it. I, like everyone, have bad moments, I am just choosing not to focus on those moments. For example, I got pretty irked at my husband last night right after I posted my blog. Ironic. Also, while I’m super happy fall is coming and I’m super happy that it was cold this morning, the fall usually sucks for indoor public places. I had to leave the waiting room because they had the heat on full blast?! Ouch. So now I’m outside in the shade hoping they text me back (it’s cold in the rooms where I get the infusion) before it gets too hot. Now that’s not cool. (Ha. Get it?)

So basically I want to say, that I’m really not constantly upbeat and I’m definitely not laid back. I’m just trying to share my experiences because someone out there might be feeling pretty hopeless right now. I’m just trying to share my experiences because there is hope and there is light at the end of the tunnel. But unfortunately, when you do get to the other side, or when you do get to the light, it may be too bright and it may hurt a little bit. But that’s ok.

Life’s not perfect. And it’s not supposed to be. That’s what heaven is for…