How Do You Have a Social Life with a Chronic Illness?

A reader reached out to me with this tricky question…”How do you have a social life between the kids and a chronic illness??”

 

It’s hard sometimes because we don’t want to disappoint our friends, family, and (more importantly) ourselves so we don’t know how to maintain this very delicate balance. I’ve asked myself this question many times before and since I’m not a lay down and play dead type of person I have a different take on it than some!

 

Watch the video below to see my answer and share with me your strategies for having a social life with a chronic illness!

Farah

Mom Mondays- Kimberly’s Story

I am so lucky today to introduce Mom Mondays! Each Monday I will be sharing an interview of a mother with a chronic illness and sharing it with all of you! My hope is that with time we will all have a chance to realize that we’re not nuts! We’re all going through a similar journey and are all doing our very best! I can’t wait!

I want to take this time to thank Kimberly for taking the time to share her story with me…and with all of you! Please check out her awesome fashion blog at Penny Pincher Fashion. She has great advice and tips on how to step our look no matter how we feel!

The interview is 25 minutes long, but definitely worth the watch!

If you are interested in being a part of Mom Mondays please email me and we can set up a time for an interview! The more the merrier!

Farah

You Probably Got This From Me- A Parent’s Guilt

you Probably got this from me a parents guilt copy

“I wonder where you got all of these things,” she would say. I was tired. I was sick. I didn’t care where or who the hell this disease came from. I have it. I must live with it. It is my heavy cross to bare all on my own. “You probably got it from your dad. No one on my side has autoimmune issues.”

“Does it even matter, Mom? I have it. I just have to deal with it,” I’d impatiently say.

“Well, no. I just…” she’d let her words trail off. There was nothing she could say. I wouldn’t listen and the guilt she had brewing in her heart was at a constant simmer. Each flare I have, each pain I felt….she felt it in her soul.

“It is what it is. Would you rather me not have been born? I either live with this regardless of where I got it from….or I was never born at all with no chance of being sick. Hey, I gotta go. The boys are about to destroy something.” I ended our conversations quickly each time she brought this up. Each time I would be annoyed that she would turn this into a oh you poor thing, you gave your daughter an incurable illness on accident moment. My expectations for her to automatically understand what I needed in that moment were too high for her to reach.

Why doesn’t she understand? I would think. This isn’t about her. Why wallow in self doubt for something you’ve never had control over? 

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When I was child I had severe asthma. The type of asthma that would land me in the hospital for a week at least once or twice a year from the time I was nine months old. Each visit I’d be held down for a nebulizer treatment, I’d have oxygen on my face, and I couldn’t laugh when my sister blew up a latex glove and held them as a gobbler without going into an attack.

Each visit my dad would be angry. I thought I did something wrong. I thought he was mad I was taking time away from the family because I was sick again. I thought he regretted having me because I couldn’t stay healthy when he could stay out of the hospital even though he had asthma, too. I cried to my mom asking her what I had done. She brushed my hair from my face, held me close, and, as I smelled in her motherly scent, told me that he felt bad that I was sick and that’s how he (and most men) handled feelings like that.

My father came to me during one of these hospital visits. My mother had clearly spoken with him about my fears. He sat with me alone in the glow of fluorescent lights and told me about the times he almost died from asthma attacks in the 1950s and 60s. He told me about the times he would cry because he couldn’t breathe and couldn’t handle the suffering. Each time he would promise himself he’d never have children so he wouldn’t pass this down to someone like his mother had passed it on to him. He wasn’t mad at me, he had said. He was mad at himself for letting me be sick.

Even then, as a child of 12 or 13, I was able to mutter the words, “Would you rather me not have been born? I either live with this regardless of where I got it from…or I was never born at all and no chance of being sick.”

Tears streamed down his face as he hugged me tightly through the wires and tubes. “No, Farah,” he whispered, “You and your sister are the best things to have happened to me.”

He never brought it up to me again.

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So ten years later when I was dealing with my mom and her own denials I didn’t have the patience I probably should have. I didn’t understand why she felt almost obsessed about knowing where I had received this disease from.

I couldn’t understand her obsession.

I wouldn’t understand it.

Then I had a son. And then I had another son.

One cold winter night, I slept in a hospital cage crib with my 20 month old son (one of the benefits of being tiny is fitting in a hospital crib when your baby is sick!).  He laid on my chest gasping for air, sleeping  and exhausted by the constant effort of something that should require no thought. He had RSV, they said. He had asthma, the said. I passed it on, they said.

That night, I sang Baby Mine over and over as I guiltily thought, “I gave this to you. How many nights will we spend in the hospital because of this? You have asthma because of me and I don’t have a clue how to take away your pain.Your pain is because of me.” 

Memories flooded back of my family around me in the hospital bed, my father feeling guilt because he knew he gave me asthma.

Memories flooded back of more recent conversations, my mother feeling guilt because she probably gave me lupus.

To me it didn’t matter where I got it from, but their love for me made the knowledge that they were (in literal definition) the source of my pain broke their hearts.

They felt a guilt that only a parent can feel. A guilt based on their own illnesses. A guilt that they were meant to protect me from bad things, but weren’t able to do that seemingly simple task.

It’s okay, Mom and Daddy. It’s okay to feel guilt for what has happened, but it’s not your fault. You had no control over which genes and characteristics were passed on. None of us do. Don’t grieve for what has come to pass. Don’t let my illnesses suck you into a cycle of guilt and hurt, too. Just know, that without my asthma there would be no breath. Without my lupus there would be no me.

And without me, no one could love you both as much as I do.

Farah

I’m the Mom…

I'm the Mom

I’m the sick mom.

There. I said it.

I’m the mom who has to spend days on the couch because she can’t move. Because of lupus.

I’m the mom who has to ask friends and acquaintances for help so she can go to doctors appointments, medical testing, and, most recently, monthly IV chemotherapy infusions. Because of lupus.

I’m the mom who, as she silently winces in pain while switching out the laundry, listens to her six year old discuss upcoming activities. Only to hear him add, “If you’re feeling ok, of course.” Because of lupus.

I’m the mom who has to decide when to sit her son down and explain that we all have superhero immune cells that kill germs. Except Mommy’s are confused so they attack each other. That’s why she’s so tired sometimes. Because of lupus.

I’m the mom who looks healthy, but haphazardly stumbles at the school pick up line.

I’m the mom that seems unintelligent because she stumbles over her words. She can’t formulate a coherent sentence or remember what was said a few moments earlier. She struggles to read bedtime stories because her vision comes and goes while her Central Nervous System is attacked. Little would people imagine that she graduated college with a degree in Biological Psychology, that she was a high school biology and chemistry teacher, that she was is smart, but she doesn’t feel that way anymore.

I’m the mom that people used to think had it all together…the mom that could fake it ‘til she made it. Except now faking takes up too much of her unavailable energy. She’s jealous of the moms that can do all of the school activities, PTO, Room Mom, play dates, and more. The ones that look put together, dressed, and beautiful. She’s not like them anymore…

I’m the mom that panics as her sick, fever ridden son coughs only days after her last chemo infusion.  She guiltily panics not because her child is sick, oh no, but because of what catching the virus can do to her.She has to tell her son that he has to cover his mouth when coughing because Mommy is on a medicine that if she catches those germs will make her really, really sick. “Will you have to go to the hospital, Mommy?” he asks. Her eyes glisten as she tries to formulate an answer that won’t make him feel responsible if, in fact, she has to go to the hospital at some point. Because of lupus.

I’m the mom looking for the silver lining in the chronic illness that has redefined her and her life. The silver lining that her sons will grow to be sympathetic and empathetic men. The silver lining that maybe she can help someone down the road travelling through a similar journey. The silver lining that maybe, after all is said and done, this is her purpose. Her legacy.

I’m the mom that thinks of her mortality. Prays she will get to see her sons graduate high school, college, get married, and have children of their own. Scared to leave a husband that needs her as much as she needs him.

I’m the mom scared about what may happen and how much worse it can get before it’s all over. Only to realize there is absolutely nothing she can do to change her future. Because of lupus.

I’m the mom guilt ridden because her children deserve so much more.

I’m the mom that struggles as a wife because her husband deserves a teammate. Not a liability.

I’m the mom whose home is a mess because she’s too tired to keep up anymore. Toys lay where they were placed. Laundry continues to pile up.  She seems lazy because she survives on the bare minimum during a flare. Sitting and knowing she is capable of so doing so much more, but her body refuses to allow her that luxury because of lupus.

I’m the mom that acts stronger than she is so no one will think of her family as victim to unfortunate circumstances. So no one will believe that she’s a whiner. So no one will think she is weak.

I’m the mom who’s not strong enough to fake being healthy anymore but refuses to let her children know she can’t do as much as the other moms. It breaks her heart because she knows they know. Oh….they know she’s different even if they don’t know it’s because of lupus.

I’m the mom who can’t give up on fighting to get better so she doesn’t have to be THAT mom anymore..

I’m the mom who works her hardest. Pushes herself beyond her ability. Ignores the aches, the screaming pain, the debilitating fatigue just so she does not to have to once again say…

I’m the sick mom…because of lupus.

 

Dear Lupus

Dear LupusDear Lupus,

Hi…how are you doing? Oh that’s right…I know how you’re doing…you’re sitting right next to me like a family wolfdog always chewing on my shoes. You’re my constant companion using my organs, my nerves, and my joints as your chew toy. You’re my inner wolf howling for me to acknowledge you on my best of days. Oh yes, dear Lupus, you’re my worst best friend.

Lupus, you scare me. You’re the one part of my life that has more control than anyone else. You keep growing and growing and growing like a character of James and the Giant Peach. Each year you find a new part of me to attack more and more. Your leeching of my energy is never ending. My grieving is a constant cycle.

It was over a decade ago when I first met you. I was scared of you then, but the fear was like a child scared to jump into the water. The water was cold, the bottom unseen, and I didn’t trust my abilities to swim. Now you petrify me as I realize I have so much more to lose if I let you get your fangs in me too deeply.

Oh, Lupus, you have so much power. You can ruin a day, a month,  a year. You cost my family thousands of dollars. You cost me dozens of good days and foggy memories. It is because of you that I’m not the woman I want to be. It is because of you I’m struggling as a mother.  It is because of you I constantly feel guilt. It is because of you my marriage is different. It is because of you I am constantly learning how to manage my life. We’ve negotiated, oh yes we’ve negotiated, but with each chance you get you change the rules on me. Suddenly I can’t see, I can’t feel, I can’t move…and it’s because of your never ending hunger to take more and more from me.

What do you want? Why have you chosen me as your lifelong companion?

Lupus, I’d be lying if I said you don’t define me. More accurately, you’ve redefined me. You’ve redefined my expectations of myself. You’ve redefined my ability to empathize.

You’re not all bad, though.

You’ve helped me become a better person (I know…it doesn’t seem possible, right?). You’ve helped me realize everyone has their own story. You’ve helped me find my passion for helping others.

It is because of you that I want to help those struggling with chronic illness. It’s because of you that I have the patience to listen someone talk through their pain.

It’s because of you I’ve found my purpose.

So while there are many moments I wish you didn’t exist, you’re a part of me now.

Just please, Lupus, take it easy on me. You’re stronger than I wish you were, and not a pet I’d recommend anyone to keep.sig

Today is officially the first day of Lupus Awareness Month 2014! I find it so ironic that Lupus Awareness Month coincides with my birthday month! Talk about fated ;-). 

The Lupus Foundation of America is running a campaign right now called, “Dear Lupus” and I’ve decided to join in. I would love for all of you to join in, too! You don’t have to be a lupus patient. You can be a family member, friend, or acquaintence. We all have something to say to lupus. Let’s get it all off of our chest. Send me or the LFA your Dear Lupus letters! I can’t wait to see what you have to say. 

Don’t forget! May 10th is World Lupus Day and May 17 is Put on Purple Day! I would love if you posted some of your pictures on to my Facebook page!

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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

A Lupie Protects Her Pack

Lupie Protects Her Pack“They’re testing me to see if I have lupus,” the text says. I stop what I was doing and grip tightly to the phone.

“Why? What’s wrong? What are your symptoms?” I text back. She can’t hear the panic in my voice or the questions racing in my mind. Please, not another lupus diagnosis. 

“Fatigue. Joint pain. Can’t lift my arms over my head. I’m tired. So so tired.”

“Anything else?”

“No,” she replies. I’m sure she thinks that those things are plenty to be suffering through, and they are, but suddenly I’m running down the list of typical early symptoms for lupus.

“Hair loss?”

“No.”

“Rash?”

“No. I don’t think so.”

“Mouth sores? Sun sensitivity? Headaches?” My fingers are moving across my cell phone screen faster than a teenage girl texting her boyfriend.

“No. Just the joint pain and the fatigue.”

I finally breathe. Ok, I think, All signs point to something else…for now.

“Ok, good. Keep me updated when you get your lab work back,” I tell her.

I don’t tell her what I’m feeling. I don’t tell her the panic that grips my chest anytime I hear someone is being tested for lupus. I don’t tell her that every part of my being is willing her blood work to come back negative. I don’t tell her my heart is beating like a deer being chased as the wolves nip at her rump.

And then I feel it…a protectiveness over others. A feeling that no one should have to go through this if I am already doing it.

I’m taking one for the team and I’m one of one and a half million Americans. That number doesn’t need to grow using people I care about.

I’m not sure why I have this fear of others having lupus. You’d think I’d want someone to join in on the fun. Someone that will understand what I’m going through a little bit more. It’s awesome when I make a warped joke about being a pirate for Halloween when I can’t see out of my left eye and someone joins me at laughing at the morbidity of it. Or the joy I have when another lupie finds humor in my pot stickers party trick.

But I can’t get past the fear.

I cried when rumors came out that Selena Gomez has lupus. I was about her age when I was diagnosed and have traveled a less than glamorous path. It pains me to think her star may fade sooner than it should. Just because I made it through this far…why should anyone else have to, too?

But, there are people going through it. More and more Americans are being diagnosed with lupus each day. I’ve learned that with my disease comes purpose to help those as they learn the ins and outs of the disease. I’ve learned that difficult things happen to good people and we’re all so much tougher than we realize.

I will always wish that others don’t have lupus. I will always hold my breath when they tell me the news. I will always realize there is nothing I can do to stop it from happening.

So instead of trying to be deer protecting her herd, I’ll become a wolf guiding her pack.

 

How to Turn Neuropathy into a Party Trick

Neuropathy LupusI have an awesome party trick. It’s called “Neuropathy.”

I can’t feel my hands.

Or feet.

Or various parts of my body.

It’s like a freaky little side show I’ve got goin’ on and may I say, “Thank…you…lupus!”

laughing clown

For those of you thinking, “What is this neuropathy you speak of?” Let me tell you a little bit about it. Neuropathy is when the nerves that come from your brain and spinal cord freak the hell out and stop working. It comes with tingling, numbness, unusual sensations, weakness, or burning pain wherever the nerve decides to not work. For most people it’s only your hands and feet.

For me, it’s climbing up my legs and arms. Currently I also can’t feel my right butt cheek.

butt numb

I’m also sure most of you aren’t quite sure what is so funny about the numbness and tingling that keeps leading to me burning myself.

Neuropathy Burn

I never felt this happen!

Whoopsie daisy.

Well, if I can’t laugh at it I very well may cry so….let’s just laugh. Let’s laugh about the complete loss of feeling  of temperature. Or that I can’t feel the bath water temperature for my kids (I use a baby rubber ducky). Or that sometimes using my fingers is the same as using slabs of beef to open a zip lock bag (I use my teeth). Or that I stub and break my toes all the time (This little piggy is in critical condition). These hands and feet of mine are losing their purpose.

Except there’s one thing they can do. Prank someone. And we all know I’m all about the practical jokes.

This, my darlings, is how you use your dying nerves to mess with someone’s head.

Sideshow

  1. Go to a party.
  2. Find big burly, tough man.
  3. Find steaming hot appetizer. Freshly steamed pot stickers will do.
  4. Nonchalantly grab appetizer fresh from the plate.
  5. Do not take bite and burn tongue.
  6. Continue conversation.
  7. Take bite off of the cooled part.
  8. Watch burly, tough man pick up steaming hot appetizer.
  9. Watch burly, tough man drop hot appetizer and yell, “Hot DAMN!”
  10. Mention you didn’t think it was hot and eat entire piece.
  11. Giggle.
  12. Find new victim.
  13. Repeat.

I know I’m easily amused, but if I can’t laugh at it…then what’s the point! Do you have any accidental party tricks up your sleeves? (Pun intended).

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Learning to Accept Help

Learning to Accept Help with lupus High Heels and Training Wheels

You need help. No, not mental help (ok, maybe that, but a little insanity in us makes us funny), but real physical, logistical help. Except if you’re like me and you’re more Type A then an apple at the beginning of the alphabet book then I already know that you’re not going to accept anything I write. You’re scanning the words looking for reasons to point out that you don’t need help. Perhaps you’re even thinking that somewhere deep inside of you there is a way you can do it all on your own and you’re failing because you haven’t figured it out yet.

I am here to burst your bubble, you perfectionist. I can guarantee that there are so many of us who need help but are too proud to accept it. Some of you may be on the brink of realizing you’re lost and alone. Perhaps you feel like you’re suffocating and overwhelmed.

If you’re a mom with young children and you’re drowning in a pool of slobber, snot, and diapers or homework, activities, and sports, then you may be starting to face the harsh reality that you can’t do it all on your own and you feel like a failure.

If you’re sick with an autoimmune disease (I don’t know, maybe lupus for example ;)) then you may be starting to face the harsh reality that you can’t do it all on your own and you don’t know where to turn.

If you’re both, then I’m amazed you’re not curled into a ball in the corner of the bedroom rocking yourself back and forth chanting, “I can do it. I can do it. I can do it. Oh my gosh I don’t know what to do.” I suppose you’re probably too tired for that, though.

It may be time though, my sweet friends, to force yourself to accept support from people to help you in a bind. Even people you don’t expect will be much help may surprise you in the long haul. This includes family, friends, neighbors, and acquaintances. You’d be amazed at how many loving and supportive people there are that will help.

I have been blessed to have people teach me something that I've struggled to learn...accept help.

I’ll be honest…mine fell into my lap. We don’t live near family and we recently moved to our new home so it’s been a bit different. In September, when I was in a panic as my vision suddenly disappeared in my left eye while my husband was out of town, I had a wonderful neighbor (who had only known me for two or three weeks) immediately jump into action and pick up my kids from baseball practice as I rushed myself to the ophthalmologist urgent care.  I cried with relief that day.

Once my Cytoxan treatments started, I’ve had neighbors and new friends willing to help us during this time and while I don’t want to talk about going through Cytoxan all of the time (I mean, I am MORE than my current circumstances suggest), I do appreciate their concern.

I’m awful about asking for help. Asking for help makes me feel like a failure. Somewhere in my emotions I have this ideal that I should be able to do everything all.of.the.time. It’s a constant battle because I know that I can’t do it, but it doesn’t mean I won’t slave away until I do. I will always pretend to be supermom…even if it means wearing myself into the ground. I’m still learning that balance. I am embarrassed to acknowledge that I’m weak and that I don’t have my act together. I’ve never learned how to accept these offers of help from people.

Except these new friends haven’t offered to help, they’ve demanded that they help. At first I was taken aback and frightened like a lost little pound puppy, I’ve never had good experiences with people being all up in my business, BUT with time I’ve realized there really are people that want to help you with no ulterior motive.

I have been blessed to have people teach me something that I’ve struggled to learn.

Accept help.

And to them…I say, “Thank you.”

Now I’m trying to be better when people say to me, “Please let me know if there’s anything I can do.” I try to take them up on it. I ask them to watch my kids when I have treatments or appointments. I accept the meals they’ve prepared.

And each time, I cry. I cry with relief. I cry with acceptance. I cry with peace.

Because those things are now one less stress that I have to worry about.

Because no matter how Type A I am, I will never be able to do it all and I must learn to accept the love and help from those around me.

Maybe it’s time you should, too.

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Pretending to be Supermom with Lupus

Pretending to be Supermom copy

One of the hardest parts about having lupus is learning how to act. It’s a gentle balance between acting fine so you don’t have people bothered that you’re sick all of the time and acting how you truly feel so you don’t have people thinking that what you’re going through is not difficult. Since I don’t balance this well I constantly feel as if though I’m a monkey at the circus riding a unicylce on a high wire while juggling flames and dodging banana peels from the unsatisfied audience.

I work so hard at pretending to be Supermom with lupus. One of the biggest struggles I have with being sick as a mom is the harsh reality that I will never ever be able to do all I want to do for the boys and my husband. I will never be able to do as many Pinterest worthy activities that I want to do, cook as great a meal for them as I planned, or have the house organized and efficiently functional. I have a huge case of June Cleaver syndrome and I fall miserably short of her perfection daily.

So the question for lupies is deciding when do you want to up the pretending? When do you need fake it so much that people think you’re supermom? What are the requirements for you personally that are worthy of pushing yourself beyond your limits? 

Here’s how I decide:

  1. What do I want the kids to remember? One of the things I’m very particular about is the boys’ birthday parties. Most importantly, their cake. I will stay up the night before until the wee hours of the morning working on this cake. To me, this is what they’ll remember. I’m not able to do everything I want with the boys because I don’t feel well enough. I have days where I can’t do anything with them because I struggle. But I will always make them a kick ass cake. I only have to do it twice a year and in the end….I want them to look down the road and say “My mom did that for ME despite all that was going on.” It’s the one thing I KNOW I can do for them. 1948064_646798532022637_232212603_n
  2. What price will I pay with my health if I do this? I know it is guaranteed that I will have my butt handed to me on a plate after a birthday party. I will be so tired I won’t be able to walk. My body will be in one huge Charlie horse. I will need to sleep for days. I also know that it’s an important memory for my boys and that it will be worth it IF I budget in recovery time. Which brings me to my next point.images (3)
  3. Can I budget the time needed for recovery? If I can’t budget in the time for a recovery I don’t do it. Right now my son’s baseball league needs coaches. Every single part of me wants to do this. I asked my husband what his thoughts were about it. He was supportive and said that if I thought I could physically handle it then it’s fine. I know I can’t so I told him, “Just tell me ‘No’ so I can realize I’m overdoing it.” I wouldn’t have the time to recover for something like that. With time, life, and treatment scheduling I would be completely over my head and my body wouldn’t forgive me. Suddenly something that should be so much fun would end up being a chore. I’d ache, but I’d go. I’d be exhausted, but I’d go. I wouldn’t be able to have my husband just take the kids to the games so I could rest. I wouldn’t be able to only be a spectator. So, no matter how much I want to do it I realize that there wouldn’t be enough recovery time for it to be worthwhile.36a6a2316896ec22e7f84a81164dfafb

What I have learned is that I have to make deals with myself. I have to let go of this daily ideal and decide when that ideal is going to work for me. I have to make a conscious decision of what I want the boys to remember about their childhood and me. I’m not expecting gratitude from them yet, but someday…somehow…they’re going to look back and think, “My mom did her best and her best was awesome.” 

Until then, I’ll brush of my cape and be Supermom while lupus let’s me.

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