Wordless Wednesday- What Does This Picture Make You Feel?

Wordless Wednesday Lupus

Wordless Wednesday- What Does This Picture Make You Feel?

 

The Chronic Illness Grieving Cycle

Chronic Illness Grieving Cycle

Hi my love, Yeah you. The one that is Googling everything you can find about your new disease. You want to know what to expect. You want know how bad it’s going to get. You’re scared to know what it all means for your life. It’s ok. I understand what it’s like to be there. I know what it’s like to feel like I’m constantly searching a correlation between new syptoms and lupus. I know what it’s like to want to prepare. You are not alone.

When I was diagnosed with lupus 11 years ago I only expected to struggle with the physical part of the disease. I knew I would hurt. I knew I would be tired. What I didn’t expect the emotional roller coaster I would feel as I was trapped on this roller coaster of lupus.

Experts say there are five stages of grief. Unfortunately, when you have lupus (or any chronic illness for that matter) the grief stages become more of a grief cycle. You will feel these emotions over and over and over. Their really is a chronic illness grieving cycle. For me, each flare reignites this cycle. It’s so much easier to act like I’m not sick when I don’t feel sick. Then *WAM BAM *lupus rears its ugly head and I begin the cycle again.

Each time, without fail, my cycle goes like this.

  1. Denial– Every. Single. Time. I begin to flare I ignore the signs. Quite often my husband or a friend (that lives hours of miles away from me) will notice the symptoms long before I do. They will gently nudge me with a “you need to rest” or “let me do it”, but I’m too stubborn to pick up the obvious clues. You see, before each flare I feel fine. I’m as happy as can be as I skip through my flareless life. Then my flare starts sneaking up on me and instead of acknowledging my disease’s existence I continue the path of denial and ignore my aches and pain. Until I can’t and then I feel anger.Calvin-Hobbes-Its-Not-Denial-poster
  2. Anger– When I get angry I get PISSED! I begin my “Why me?” and the “What did I do to deserve this?” I cry angry tears mad that I’ve fallen victim to something completely out of my control. I get mad at God, at doctors, and at anyone that tries to tell me, “I told you so!” I begin to hate my body. Loathe my body. It is my enemy. I crack sarcastic jokes about getting a lemon of an engine. I can’t stand looking in the mirror. My body becomes my enemy number one and anyone that has anything to do with it becomes my enemy number two. Except, life goes on. My kids need a mom. My husband needs a wife. My friends need…well, I need them more than they need me so I begin to bargain with my lupus.Quotation-P-G-Wodehouse-anger-men-humor-Meetville-Quotes-2391
  3. Bargaining– If you have a chronic illness you’ll agree that your disease very quickly goes from a part of you to a unfortunately sidekick. (Over time I’ve learned to visualize mine as a pet wolf that sometimes craps on my carpet and I begin to wonder why I keep it around.) Eventually, during the throes of a flare, I end up trying to negotiate with my pet wolf. I tell it, “If you let me be superwoman for the birthday party, I promise I’ll rest.”, “If I sleep all day Saturday, I’ll be back in the game next week.” I negotiate until I can’t negotiate anymore. I do everything until my body, my wolf, and I are laying on the bathroom floor exhausted from a shower that was meant to refresh me. Let's Make a Deal
  4. Depression– And then I cry. I cry harder than I ever have before. I hate my life. I loathe my body again (see a trend?). I begin to spiral (quickly) into a tunnel of depression that leads me to the deepest, darkest, corner of my mind. Nothing makes me happy. Nothing makes me smile. Friends feel me shrivel while my husband watches me withdrawal. I feel ripped off. I feel that somewhere, somehow, I did something that made my body do this to me. I feel hated from a God I don’t know exists. I feel trapped in a body that is trying to kill me. I feel guilt for something I have no control over. Then I cry because I have no control over anything. I want to hide in my bed from the world and shrivel into nothingness. Except then…a little voice says, “Mommy? Come play with me.” It's Ok Not to be Ok
  5. Acceptance– I finally hit a point where I can’t take the pain anymore. I can’t take the suffering. I can’t let my husband watch me wither away. It is in this time you realize that this is your life. This is your disease. How you choose to live with it completely depends on you and your desire to have a life. You will do whatever it takes to feel normal again. You will take your medications. You will exercise. You will rest. You will relinquish power to lupus and let it do its thing. You will fight it (oh, you will fight it), but you will acknowledge that it’s not going away. It is a part of you, a cross you must bare and an enemy you will war against the rest of your life. Except, it is what it is…and life doesn’t stop because your body is trying to force you out. You will brush yourself off, get out of bed, and take care of your body. You stop fighting your wolf. Instead, you begin to train your wolf and yourself to learn to coexist because you realize the most important lesson of all….A life with lupus is better than no life at all. ghandi

So my dear friend, as you cry tonight and perhaps tomorrow as well, please know that I’ve been there. We’ve all been there. Those of us that fight diseases that nobody can see. You are not alone and while you may run through these emotions multiple times a flare…so have we.

The key is remember that the flare will end. Sure you may come out of it a little worse for the wear, but you will come out of it. And as you go through it, know with all of your heart…

I am here to hold your hand through the cycle. Remember, a lupie doesn’t forget her pack. I will not forget you.

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PS> Please take the time to read the links attached in this article. Each one relates to this, and each one is meant for you. xoxo

I’m So Many People

I'm So Many PeopleI watched Mad Men’s most recent episode tonight and as I’m drooling over watching Don Draper while he sits with his daughter she says something so poignant to both Don and me.

“I’m so many people.”

Immediately I realize that Sally is more like Don than she realizes. Then, I realize that I’m so many people, too!

Let’s discuss my top five personalities:

  1. The Dedicated Mother- I’m dedicated to my kids. My boys are everything to me and sometimes when I’m at my wits end they are the only ones that can rein me in. My oldest and I are connected on a level beyond comprehension. My youngest is my comedic relief with his facial expressions and hilariousness (I’m positive he got that from me!). But…let’s be serious here. I mean you all are my besties, right loves?? I’m a good mom… as much as I can be.  I love them more than life itself, but sometimes they drive me batshit crazy. I will go to the end of the world for them. You mess with them and you will have five feet of fury all up in your biz-nass. I’m dedicated to them, but man…they can wear a woman out!Dedicated mom
  2. The Haphazard Housewife- Ask my husband and he will tell you. I fake it til I make it. After 10 years and I still haven’t figured this crap out. I do laundry daily (and if you follow me on Facebook you know I have recently taught my kids to fold their own laundry #childlabor), I cook almost daily, and I clean on the regular. My place still looks like a bomb blew up and exploded Legos and other debris all over the place. I have some friends that are awesome at this housewife gig, but me? Not so much. Just know that if you ever come to my house and it’s clean it’s because I shoved it all in the basement or closet before you arrived. If I haven’t, then I’m comfortable with you and you’ll find some chow mein under the table right next to the Lego guy’s head. Lego Floor
  3. The Outgoing Friend- See if you’re really my friend you know I can talk to people I hardly even know, but I’m plagued by insecurities and am a slight introvert by nature. Yeah, I don’t get it either. I’ll talk to everyone and anyone, but at the end of the day I’m more nervous than a Chihuahua standing next to a Pitbull. I over analyze each action. I worry I hurt others’ feelings. I always assume others think I’m a  hot mess (which I am) even though I want them to think I have my stuff together. Then I go out of my way to seem like a hot mess so you think this is all on purpose.  If you go out with me I will talk to the random guys at the other end of the bar and say absolutely inappropriate things. I also have diarrhea of the mouth if you say something that makes me smile. Sometimes Oftentimes the #nofilter trend spills over to me. I’m willing to make you laugh, make you listen, and make you tell me what’s going on. I don’t like superficial friendships so it’s all or nothing, baby. Tell me the basics and I get bored….ain’t nobody got time for that!Privacy aint nobody got time for that
  4. The Loyal Partner- I’m a Taurus. I’m stubborn. I’m bullheaded. I’m loyal. I am so dedicated to those I love that I will do anything for them. I am my husband’s partner, teammate, and best friend. I am so dedicated that at our wedding I told him that I was too short to be his pillar of strength, but I was definitely short enough to be his stump to rest on and gain strength. I will always be there and will be a constant companion to him and to my closest friends. Sorry, once you pass from acquaintance to friend to true friend you can’t get rid of me. I’m kinda like a bad penny that keeps turning up. BadPenny
  5. The Lonely Lupie- I’ll admit it. Before I started meeting so many of you fabulous people I felt pretty darn alone as a lupus patient. I thought that no one understood my level of crazy and I was tired of being the only hot mess in this joint! Then I met you! Yes, you! And you! And you! No….not you over there. But even with you all, in the solace of my own home,  when my joints are swollen and when the pain and exhaustion sweeps over me…I felt the isolation of any woman with a chronic illness.  I feel anger. I feel guilt. I feel mourning. I feel loss. I feel crazier than a cockatoo in the middle of Antarctica. Oh well, at least I’m hobbling with so many new friends!

So these are only five of my crazy personalities! Share yours with me AND if you really love me please make sure to Facebook  and Facebook page! No spam, just all sorts of High Heels and Training Wheels goodness.

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Small Victories Sunday- Linky #13

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Welcome to our Small Victories Sunday Linky!

This week, I am co-hosting the Small Victories Sunday linky with Tanya from Mom’s Small Victories. The Small Victories Sunday Linky is a way to share the small victories you celebrated with other readers this week. Whether it’s a fabulous book you read, a recipe your family loved, a home organizing project that you completed, a goal you accomplished, or an awesome old or new blog post you wrote, Small Victories Sunday is the chance to share positive, uplifting and inspiring posts.

Follow our Hosts:

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Ways you can follow me: Subscribe /Facebook/ Google + / Pinterest/ Twitter

Mom's Small Victories

Ways you can follow Tanya at Mom’s Small Victories: Subscribe / Facebook/ Google + / Instagram / Pinterest / Twitter

This Week’s Featured Blogger:

small victories sunday linky featured blogger 200x200 I’m happy to announce, my Featured Blogger for this week is Diamonds in the Rough. Feel free to grab the Featured Blogger button for your blog and share your good news! Be sure to visit Tanya to see which blogger she featured whose post earned the most views this week.

Rachael wrote a fantastic post about a fight during a marriage and I felt myself nodding along and thinking “Oh that’s just how we sound!!!” My favorite part is how her husband makes her laugh at the end of the fight. As soon as that initial “Angry Wall” is broken then it’s so much easier to communicate! Thank you Rachael for such a great post! <3

My Weekly Recap and Next Week’s Goals:

This week was slightly crazy for me. I was able to write about how much I love being in my thirties and how my neuropathy can be very funny at times. I try to laugh at my handicaps. 

Since we’re doing Small Victories Sunday then I wanted to talk about three small victories from this week:

  1. My oldest had his tonsils and adenoids taken out on Friday and those suckers were HUGE!! About 1.5-2″ in diameter EACH! So, I’m so glad those were taken out. They needed to get out!
  2. My Cytoxan treatment made my pain minimal for a whole week this time!
  3. My youngest son and husband are having a boys trip so that my oldest can recover in peace. They seem to be having a blast!

Now It’s Your Turn to Share Your Favorite Posts and Small Victories!

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Linky Rules:

    • Follow Tanya and I so you stay informed of Small Victories Sunday updates and posts shared throughout the week.
    • Grab the Small Victories Sunday button and place it in your sidebar, linky page or the post you are linking up.
    • Share up to 3 of your favorite family-friendly blog posts you want to share. Enter your link below and let’s celebrate our small victories together!
    • Visit as many of the other participants as you can and cheer them on. Please visit at least 2 others for every link you enter.
    • By linking up, you are giving Tanya and I permission to share your post on my social media pages to let others know of your awesomeness too!
    • By linking up, you are giving Tanya permission to email you notifications when the linky is open. You can unsubscribe to emails at any time.
    • Spread the word! The more you share about the linky, the more visitors you will get to your content too.
    • Stop by our Small Victories Sunday Linky Board on Pinterest and like and repin the posts to your boards.
    • Need inspiration? Click here for Small Victories writing prompts, but the sky is the limit.
    • Interested in Co-hosting? Send Tanya an email at tanya{at}momssmallvictories{dot}com.

An InLinkz Link-up

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Thirteen Reasons to Love Your Thirties

Thirteen Reasons to Love Your Thrities Large copyOk, so we’ve all read those posts about people talking about how wonderful it is to be in your thirties and let me tell you…it is AWESOME. It’s as if though life has set its own little timer to send you little messages. When you’re in your teens it says, “And with this decade I give you embarrassing changes, over emotional feelings, and hair in weird places.” When you’re in your twenties it says, “And with this decade I give you experimentation, identity struggle, and really good party stories.” Then when you hit your thirties Father Time kindly tells you, “And with this decade I shall give you these bonus gifts.” Sure, some of these gifts were hard earned, but others were handed to me as if though I was the Queen of Sheba.

I love the dirty thirties.

Now before some of you point it out I know, I’m still in the early part of the decade and perhaps a recap of the decade is something that would be more appropriate down the road. Ok, but I’ll do that then. For now, I’m going to jump ahead a few years and tell you thirteen reasons to love your thirties! 

  1. I go to bed early. I never understood why old people went to bed so early. The good stuff in life totally happens after ten! Now….sleep is better than the good stuff. So. much. better.  Although, I still think waking up late is better than a triple fudge sundae while I’m PMSing. Ok…maybe not that good…but pretty damn close.
  2. Gray hair  Glitter is in my hair. I know, I’m not supposed to like this, but I really think it’s life’s confetti reminding us we’re only here for the party. That doesn’t mean I won’t cover it up with purple, though.Dancing in Confetti
  3. I’ve finally become more sure of who I am. Yes, I’m not perfect. Sure, I’m softer than when I was younger, but I know each curve and part of me and I’m okay with them…most of the time.
  4. I do what I want without much care about what people think. I’ve dyed my hair purple, I want a tattoo, and I don’t really care what people think about it. Don’t hate, appreciate. Booyah! Booyah!
  5. I keep trying to become a better person. Mind, body, and soul. When I was in my twenties I didn’t care about what I was doing to myself. I wanted to have fun and enjoy! Nothing better than living on Reese’s every.single.day. Now I’m so much more aware of what I put into my body and what I do to take care of my emotional health. Treating myself better takes me to a whole new level of zen.
  6. It doesn’t matter if you’re part of the cool kid group. You ARE the cool kid. If you have kids, you know you should bank on that with them for at least 10 years. Capitalize on it nowHighest of Fives
  7. I have no issues with making fun of myself. When I was in my twenties my self-deprecation only went so far. Now it’s at a whole new level. Now I will freely admit I’m a hot mess, that I can’t see, and send pictures of myself making jacked up faces.
  8. I’ve learned patience. Not just a “good things come to those that wait” patience, but patience such as, “just because that person is as annoying as hell I will NOT punch them in the face or tell them to bugger off” type of patience. Which brings us to…
  9. Self-control. Back in the day you wanted it then you got it, you thought it then you said that, you felt it so you did it. In my thirties I’ve learned that sometimes it’s not worth the backlash. However…Crazy happy
  10. Sometimes it really is easier to ask for forgiveness than for permission. In fact, most relationships survive on this theory alone. I suppose we’ve learned it from our four year olds?
  11. I apologize even when I don’t want to apologize. Sometimes it’s just gotta be done. So go ahead, tuck your tail between your legs, stick out your bottom lip and say you’re sorry.
  12. I don’t have to agree with you. You may think you’re the smartest person around, but at the end of the day I can think what I want. I can believe what I want. I can have my own opinions and that doesn’t make me think any less about you. The key is that I…
  13. Listen with an open mind. I’ve been known to be stubborn and more headstrong than a bull in a fight with a matador. Just because I don’t agree doesn’t mean I should not give other opinions a chance.

So, as it’s sung in the Sound of Music, those are some of my favorite things! What about you? Are you happier in your thirties more than ever?

This makes me very happy

Sick Kids- Ain’t Nobody Got Time For That

So, I had this week planned down to almost every minute. Yesterday was the anniversary of my husband and I meeting twelve years ago, I had to drop my car off at the body shop (let’s not talk about why) and get the rental car. Today I have tumbling for the youngest and I can get basic household stuff done. Tomorrow I had two hours to run my errands alone. Thursday my mother in law is coming to help me so Hubs and I can celebrate our ten-year wedding anniversary. Then there’s Friday…well Friday is time to pick up the car (again, let’s not talk about why), preschool brithday shindig, and party prep day for B’s birthday party on Saturday. Among all of that I have to deep clean the house, get the cake designed and made, and prep all of the food and decorations.

Easy enough, right?

Right.

Until 3am on Monday morning I had a certain six year old come into my bed whimpering. A few cuddles and he went back to sleep until his breathing was so loud it woke up both me and my husband. I reached over to feel him and he was burning up.

Under my breath I muttered profanities as I picked him up and carried him downstairs to the couch. I glanced at the clock to see that it was 4:30am. I gave him a sip of water so he could sleep. He whimpered that his throat hurt.

Shit shit shit,” I thought as tucked him in while he held the thermometer in his mouth.

102F it flashed.

Shit,” I guiltily thought, “I really don’t have time for this this week.” 

If you’re a parent of more than one you know that without fail if one gets sick, they all get sick. This means that at least five days of illnesses.

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When I woke up two hours later to a symphony of snores I felt him again. Poor baby boy.

During the hustle and bustle of getting his brother up, dressed, and fed I called the insurance company to verify a new doctor we wanted to see was in network. They put me on hold. I then loaded the three of us into the car and head off to the preschool. I was still on hold. 

We then went to the auto body shop (for a reason unnamed) where C-dawg sat wrapped glassy eyed and whimpering. I was still on hold. 

We were picked up by the rental car company. I was still on hold. 

I carried him, exhausted, and he perked up for a moment while being in a new big truck. I was still on hold. 

He whimpered and began to fall asleep while I filled out the necessary paperwork. I was still. on. hold.

Now, under my normal plans, this was supposed to be the time where I got our week’s groceries. If you ever see a woman running around Target or Meijer in a mad dash anytime between 9 and 11am on a Monday, please know it’s me sweating bullets worried with mom guilt that I will have the only two kids in the country that are left sitting on the curb crying and emotionally damaged from their mother forgetting to get to the school on time to pick them up.  Normally, after grocery shopping I rush to pick the boys up from school, get the home, get them fed, and start my afternoon prep for the week.

Yesterday was different. I had a sick kid…a very sick kid…and I needed to get him home. So I did.

And I was still……on…… hold.

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I just about hung up, but after two hours and forty minutes of waiting ever so patiently to talk to a human being I figured I had invested so much time into the relationship between myself and the muzac that I just couldn’t let it go. (Elsa’s now singing to me that I should have.) Finally, someone answered and my question was answered within three minutes.

At that point Cdawg and I had 25 minutes before we had to go to get B from school and typical for the way my day was going C-dawg fell asleep 5 minutes before we had to leave. So I did what any mom did. I left him at home.

HAHA KIDDING! I was just checking to see if you were still paying attention.

No, what I really did was carry him to the car still wrapped in the blanket. We rushed to get B from school, get a drive thru for lunch, and were going to eat in the parking lot at the doctor’s office. This way I didn’t have to drive home, unload them, feed them, reload them, get to the doctor’s office. It made complete sense.

Until…..

As I was pulling into the parking lot I heard gags, liquid flying, and a child screamed “Mommy!”

In the rental car.

I admit it, my first thought was, “Don’t get it on the car!” and then “Seriously?!?! Seriously!?!?!? Are you freaking kidding me??” I parked in a handicapped spot, rushed around to help him, threw out my iced tea that I had not had the chance to drink so he could have a barf bucket. (I really missed that iced tea. I needed that iced tea. Ahhhh, the sacrifices of motherhood.)

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I was lucky, all of the vomit was contained to the blanket, but in the chaos I realized that I had forgotten to put shoes on him earlier. I drove us back home, threw the blanket in the washer, got the kid some shoes, and headed back to the doctor’s office.

All said and done the poor kid has strep, tonsils that are so huge they are touching, an ENT visit and probably tosiladenoidectomy is in the future, and he’s not allowed to go to school until Wednesday.

Which will be right around the time that B gets sick.

Can I get a What? What????

Sick Kids….ain’t nobody got time for that. *sigh*

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Time

TimeHave you ever heard a song that strikes a cord with you no matter when you hear it? A song so strong and poignant that it brings tears to your eyes. Acoustic Truth’s song Time is that song for me. Their video is as captivating as their sound. So, go watch their video and listen to the words. We’ll talk when you’re done….

Ok, did you listen?? Good. Do you have goosebumps? Yeah, I do too. Each time I hear this song something new is highlighted to me. Each time I watch this video I realize more and more where I want to be in forty years.

Twelve years ago today I met my husband in Vegas. In three days we will have our tenth wedding anniversary.

He’s been my biggest supporter while I’ve struggled with lupus. So when I heard the lyrics, “My dear I’m there with you/ Your pain is my pain too/ There’s nothing I can do/ So I’ll lay here next to you,” my mind rushes to so many nights where he has laid with me, his body heat against my painful joints, his hands gently putting pain relieving pressure on my hands.

I can’t imagine what time will do to our life together. Twelve years ago we were kids. We’ve grown up together. Now we’re adults with grown up worries, young children and soon enough time will take that away, too. We’ll become older, our children less needy, we’ll have to make decisions about what our life looks with only the two of us living at home alone…together. It is then, in our old age, that we realize how fleeting are the sands of time.

While marriage is a road of ups and downs, I wouldn’t want to have traveled on any other road. We’ve been there for each other during our ups and downs. We’re a team and that’s what teammates do. I only have one rule in our relationship…

I get to die first….and this is the song they will play for him that day.

My heart beats fast for you
It slow down when I think of you
There’s nothing I wouldn’t do
To lie there next to you

They say time
Heals all but the more
I have the more I fall
And pain don’t wash away
Memories of yesterday
‘Cause they don’t bring me back to you

My dear I’m there with you
Your pain is my pain too
There’s nothing I can do
So I’ll lay here next to you

They say time
Heals all but the more
I have the more I fall
And pain don’t wash away
Memories of yesterday
‘Cause they don’t bring me back to you

Everyday gets harder
Every minute and every hour
I will see you again
My life, my life
My love my friend

My heart beats fast for you
My soul still with you
With each sign I bring to you
Comes the smile I once knew

I feel you here with me
You’re not just a memory
I see the signs you leave
With each day the irony

They say time
Heals all but the more
I have the more I fall
And pain don’t wash away
Memories of yesterday
‘Cause they don’t bring me back to you

How Your Priorities Change After Kids

My son was sick this week. Of course, it’s only days after my last infusion as my immune system continues to plummet. Although when you’re a mother that doesn’t really matter as soon as you hear your little asthmatic son cough.

An asthma cough is never a good thing. Within moments you begin to count how many breaths per minute they are taking. You listen for the kitty cat wheeze in their chest. You make sure there’s no tugging in their neck or retractions of their ribs.

You watch everything.

Now, I’m the type of mom that sleeps with my kids when they’re pretty sick. I am ok with being coughed on and used as a human tissue  if it means I can keep tabs on their breathing and needs. BUT since my immune system is in the middle tanking I prefer not to be overly exposed (more than a normal person) to the germs.

So I sleep on the floor on the other side of their room. Because you know viruses don’t fly across rooms or anything.

Of course, each night my son ended up on the floor coughing on and using me as a human tissue. #missionfailed

As I uncomfortably laid on the floor for the second night in a row my hips ached and it was in that moment I realized (once again) how different my priorities are now than before kids. Here’s how your priorities change after kids:

MomPriorities

 Fortunately for me, my son is now better. Unfortunately his older brother caught the gunk.

Guess it’s another night on the floor for me! Isn’t it amazing how your priorities change so so much?

Petition to Deport the Groundhog

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I don’t know about you, but I’m so disturbed that the petition to deport Justin Bieber has made it to the White House. Apparently they can’t deport him because Canada won’t take him back. They must have a very strict “You break him, you buy him” policy. So it’s time for us all to let go of that pipe dream, people. The Bieb is here to stay.

Justin

Instead I think it is time for us to focus our energy on deporting this little ball of rodent fur.

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Did you read that? It is long past the time to petition to deport the groundhog!  That little jerk has cursed us with six more weeks of winter this pass Sunday! If I could could I would drop kick his fuzzy little behind to the North Pole and tell him he can keep his winter there. Although then, he’d chum up with Santa and I’ll be getting coal and ice for winter. At least I can BURN THE COAL FOR HEAT!

I know, I know. Everyone knows I hate being cold. Everyone is tired of hearing about how bad it is this winter. I know winter comes with ice and snow and freezing cold temperatures. I also know that I much more respect Jack Frost or Elsa (they, at least, respect the beauty and need for warmth!). I know that this year Gilbert or Phil or whatever the hell is name is is fighting tooth and nail to get on that Cold Iron Throne. He is trying to freeze us into submission!

So my fellow freezing citizens. I come to you today to ask that we get off of this deport Justin Bieber bandwagon and jump full heartedly into the deport/hunt the groundhog sleigh. Let’s destroy him so that the next time he comes out of his hole he will have to answer to Elsa for his rule of tyranny.

Want to hear more about my petitions, lupus, and me tripping in my heels with a toddler on my hip? Then enter your email in the space below.

I promise no spam. Just all sorts of High Heels and Training Wheels goodness!

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Ten Things Not to Say to a Mother with Lupus

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In case you didn’t know, I have lupus. I know. Shocking. In case you weren’t able to tell, I am also a stay at home mother to two very wonderful little boys. What I haven’t mentioned much on this blog, but more on my Facebook and Google+ pages, is that I’m currently undergoing Cytoxan IV chemotherapy infusions to try to stop my lupus from continuing to attack my Central Nervous System. If it doesn’t I am at risk for completely losing my vision, seizures, strokes, and more. Yay! As a result of the severity of my illness’ progression I’ve been coming to terms that I am a mother with lupus and contrary to what I used to believe about myself…I must learn to live with lupus. Not despite it. I’ve had to be a little bit more open about my disease and talk to more people about what I’m experiencing. (Although, I don’t think people believe me when I say I’m becoming a wolf.) With this type of openness about something that I feel weakness and guilt about also comes comments from people that, while unintentionally, are less than understanding about what I’m experiencing. I usually brush it off and inwardly roll my eyes. A simple smile and nod works to pacify them and move the conversation along.

So with that I present to you the top 10 things never to say a parent with lupus*:

  1. “But you look great!” 
    • Awesome. I’m so glad that my body doesn’t look it’s beating the shit out of itself on the outside too! I’m pretty sure I’d end up with a couple black eyes, a bloodied nose, and maybe a few unidentified bruises all over my body. But you know what, I am glad I just feel like a truck hit me instead. 775637c25b70c28e73bb5bdab70997ac
  2. “Oh, I get tired, too. It’s because of the kids.”
    •  Now I know that all parents get worn out by their children. I agree kids are exhausting, but I can guarantee you that the type of fatigue you have with with an autoimmune disease is similar to the exhaustion you would feel after running a marathon, completely uphill, through the snow, dodging grenades, with children on your back,  and jumping over trenches. All under four hours. Unless you know what it’s like to have to rest after taking a shower, you have no idea what type of fatigue a person with an autoimmune illness like lupus is facing. For now, I will work on training my children to do my housework. 57420963968820508_1ZR52rLQ_f
  3. “Why don’t you take a nap during the day since you’re home.”
    • Napping sounds like bliss. Heavenly, cloud praising, bliss. However, like most parents can understand, taking a nap while your kids are awake is similar to leaving a cat and a dog alone together with a ball of yarn. Disaster will ensue. I will be left to do more after said nap than had I not taken the nap in the first place. Not to mention, of course, that I have a list of things on my daily to-do list that need to get done because “my job” is to take care of home and child. There is no nap time for grown ups anymore. In fact, my three year old has decided they’re not for him anymore either! 6530040_9786767-plwfr2_b
  4. “At least it’s not cancer.” 
    • You are so right! I’m glad it’s not cancer. I would never wish cancer on anyone and  I cry when I find out someone has lupus. Both are devastating and deadly. I’m also realistic about what lupus is and does to my body. I’m on chemotherapy, just like a cancer patient. I’m out of options for treatments, just like a cancer patient. My body is killing itself, just like a cancer patient’s. Even when in remission it can come back oftentimes worse, just like cancer. Unlike cancer, I will have to take medications for the rest of my life to keep me alive and prevent my body from shutting down. We will never know what part of my body lupus will attack next. We will never know which flare will be the one that sends me to the glory days. Just like cancer, I will forever be faced with frailty of life and my mortality will be staring at me like a magnifying glass on a bug on a scalding hot day. But no, I’m glad it’s not cancer and again, I never ever want to face cancer. I pray for those that do have to suffer through that. I’m also realistic about what this disease can do and what my possible early death may mean to my children.20yearslider
  5. “Have you taken anything for it?” 
    • Wait, there’s medication? Lupus patients are no stranger to taking medication. I have so many prescription pill bottles my kids never ever tried to reach for them. “Oh those? Those are just Mommy’s ‘happy pills.’ Hey look! A plug outlet. Let’s go stick a coin in that!” In fact, my pharmacist knows me so well that I don’t have to say my name when I see her.  She even asks my husband about our kids when he picks up my prescriptions. Unfortunately, there has only been one medication made to treat lupus in over 50 years. Of course, I can’t take it because it hasn’t been tested on people with CNS lupus. Yay me! I have been on every other medication that is used to treat lupus and as the final last resort I am now doing Cytoxan (chemotherapy). Here’s to hoping! d8f3721653642f2f5e6dcbc7f6182a35
  6. “I have a friend whose mom died from lupus.”
    • I’m sorry for your friend and their family. I really am. And while I appreciate you trying to relate to me the only way you know how,  being reminded that I could die from lupus doesn’t really help. All it does is remind me (again) that my next flare may be “the flare” and that my mortality is staring directly at me.  36a6a2316896ec22e7f84a81164dfafb
  7. “I have a friend who has lupus. She’s just a little tired and works still.” 
    • Ok, first question…is she Lady Gaga because she doesn’t have lupus! Although, her aunt did! If she’s not Lady Gaga then she’s probably not telling you everything. It’s said that most patients downplay how they’re feeling so that their friends and loved ones don’t a) worry or b) get tired of the constant complaining. Fact is that on most days people with autoimmune diseases wake up with something hurting, not working, or difficult. Sometimes my brain is giving me the silent treatment and I can’t quite understand what you’re saying. So, your friend may be working and she may seem fine, but chances are…she’s just keeping silent. I just don’t have that luxury anymore. 5bc60b4b70acc1d25cfa898fa9d42f5f
  8. “You’re probably just depressed and lazy. Have you gone to see someone?”
    • If by someone you mean a doctor, then yes. If you mean therapist, then yes. Both of which come back with the same response. IT’S LUPUS. I tried to work through my lupus, but apparently it’s here for the count. So instead, my lupus and I negotiate with each other. Feed the kids and family OR clean the house….While being a parent would be so much more fun if I didn’t have to feed them, I am obligated to do so. So, sorry Kenmore our love date where I run you all over my floor and dance in my underwear with you while listening to music is going to have to be postponed. Man, lupus is really messing with my social life.
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  9. “Just tough it out.”
    • I’m Tonka Tough. I’ve given birth to two children through difficult pregnancies, have had two little boys use me as a jungle gym while recovering from a muscle biopsy, and I break my toes on a consistent basis (I have monkey toes and they get in the way). So yes, I’m tough. Most patients have a pain tolerance that is off the charts. Their internal strength is made with titanium. I tough it out all of the time. What you know about what we’re experiencing is only a fraction of what we’re enduring. So yes, we’re working through it. Yes, we’re not giving up. Yes, we’re doing our best. Toughing it out is our only option. We’re not lucky enough to do otherwise. b2d886ebc91dcc4e91541913897bf95b
  10. “If you went gluten free/exercised/vegetarian/vegan/raw diet I’m sure you’d feel better!” 
    • I’ve exercised. I’ve changed my diet. I actual do both consistently. I agree a healthy lifestyle is good for everyone and not just individuals with lupus. What I don’t believe is that it’s a cure for anything except Celiac Disease. What I do know is that when your body is a self-mutilating piranha no matter what you do or eat it’s still going to hate itself. It’s kerazy like that. So, I’ll keep my cookies, make my sandwiches, and enjoy my pasta. Then I’ll run the elliptical and burn off the calories. Thankyouverymuch.
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Have you ever had anyone say something like this to you when you were talking about your lupus? How do you deal with it?

*Disclaimer: If you have said any of these things to a mother with an autoimmune disease please know we know you don’t mean these words meanly. We also know that your words emphasize to us that what we are experiencing is truly not understood.

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