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

Why Other Patients Should Support the Ice Bucket Challenge

Why Other Patients Should Support the Ice Bucket Challenge copy

It’s all over social media. The gasps, the cries, the shrills, and the challenges have taken over our Facebook newsfeed. For weeks we have watched person after person, celebrity after celebrity, even children and animals participate in the Ice Bucket Challenge. We have heard more about ALS in the last month than we had in our entire lifetime. Some people have even searched to find out why they’re pouring water over their heads.

Ice Bucket Challenge

The ALS Association has raised over $88.5 million dollars (so far) compared to the $2.6 million dollars they raised in the same time period last year. People are talking. People are researching. People are learning.

And, of course, we have the critics. We have the people who think the whole idea is stupid. We have patients with other diseases, such as lupus, that talk negatively about the challenge. Jealousy oozing out of both sides of their mouth. We have whispers (because who would want to be the anti-philanthropist) about how the challenge should be for this disease or this cause instead.

To them I say, “You are wrong.”

I’m going to be straight forward with all of you. I’m not doing the Ice Bucket Challenge. I’m not pouring cold ice water over my head. I live in Chicago and all I have to do is wait a few more months and I can just step outside for the freezing cold. I’m not going to have my children do it because I don’t want them to participate in challenges “because their friends did it.” Even if it is for a good cause. My inaction doesn’t mean I think it is wrong or that I am jealous as a lupus patient that there are people who are participating. No, it means that in this instance, I prefer to learn, teach, and support.

And that’s ok.

All around Facebook I have seen memes talking about the challenge. Some of these challenges are funny.

What could go wrong?? ice-bucket-challenge-memes

Some are stupid.

Ice Bucket Challenge. Did you die? Ice Bucket Challenge

 

And some make me angry.

Ice Bucket Challenge Insult

Let me be clear. I’m not upset that there is awareness being brought to the clean water issue. I am, however, upset that they are insulting awareness about a disease because they don’t think there are enough people dying from that disease. Why is it acceptable to insult something that is being done for a good cause? Why is it fair to minimize a disease because the amount of people suffering from it is fewer than those suffering from another cause or disease? Why is it important to downplay something that is a guaranteed death sentence because it is not a death sentence that someone else is facing?

Yes, we’ve been inundated with video after video and challenge after challenge, but if your mom, brother, best friend or you were diagnosed with the disease do you think you would think this is stupid? Would you want them to see the meme above?

Take it to another level for me. Let’s say you have ALS. You understand what it means long term. That someday you won’t be able to lift a fork to your mouth. That someday you won’t be able to walk without help. That someday your mind will be functioning perfectly, but your body…well….your body has failed and all you are left with is a body only capable of laying in a bed while you’re fully aware that with time you will die.

Do you feel scared? Alone? Devastated?

Suddenly when people start doing something as simple and seemingly stupid as dumping a bucket of ice on their heads you’re excited because for the first time in your time with ALS people actually know a little bit about the disease. People aren’t just nodding with feigned understanding when you tell them you have ALS. For the first time since your dismal diagnosis you feel support and hope. Awareness is happening and you’ve been lucky enough to see a big movement in ALS awareness.

We should support that. We should support awareness and help towards any disease. We should support education and fundraising for all diseases. Even if it is something we know nothing about. Other patients should support the Ice Bucket Challenge because we understand what it’s like to have no one know about our disease. It’s called empathy, people.

October is Breast Cancer Awareness Month. We will be surrounded by pink ribbons, pink on NFL football players, and advertisements promoting walks and awareness. Buildings will be lit up with pink lights and businesses will have special fundraising opportunities. Many people say we don’t need to do the breast cancer awareness campaigns as much because the death rates have fallen. Of course they’ve fallen. They’ve fallen because of the awareness, fundraising, and pink explosion in the early nineties. Since 1990 the death rate for women diagnosed with breast cancer has decreased by 34%!! That means that thirty-four more women out of a hundred diagnosed with breast cancer will live. Thirty-four more women will see their children grow. Thirty-four more women will survive.

And why is that?

Studies have shown that there is “evidence that [National Breast Cancer Awareness Month] events were effective at increasing November diagnosis rates during the mid-1990s when the awareness movement was expanding rapidly.” In the twenty years since the initial push, more money has continued to be raised, more funds go to research, more awareness continues to happen.

Most importantly, more women get to live.

In twenty years, we can only hope that the death rate for ALS has fallen this substantially. We can only hope more children get to have their parents live a long life after an ALS diagnosis. We can only hope that progress is made in research about ALS.

Until then, pour some ice cold water over your head and support someone whose struggle you know nothing about.

How to Cure Over-Volunteering-itis

overvolunteer copyToday begins the first full week of school this year. Each Back to School season I find myself in the throes of being inundated with papers, sign-ups, and volunteer opportunities. Each summer parents grow with excitement as they begin the process of sending the kids back to school. Overwhelmed by the paperwork, but thrilled by the few hours of potential freedom to do as they please, we sign up to volunteer and be involved in our children’s schools. We are all suffering from over-volunteering-itis, a very common and curable disorder.

Except when you have lupus, the decision to volunteer becomes so much more difficult. You want to do it all. Your Type-A personality tells you that you can do it all. But, like a wolf stalking its prey, your lupus (Yes I take ownership of my lupus. It’s an unbearable pet I can’t ever seem to lose) is just waiting for you to become weak from exhaustion at what should be seemingly simple task.

Eleven years into having lupus and almost seven years into having children, I’ve realized that I can’t do it all. I can’t sign up for everything. I can’t push myself with the ferocity as I have years before. Last year’s attempt landed me into a spiraling flare that left me blinded with optic neuritis and weakened by my lupus. A flare that required six rounds of the chemotherapy Cytoxan. A flare that left me lying on the couch as my sons played trains and race cars around me.  This year I have to remember that I cannot be everything to everyone at the school. I can only be my boys’ mother, as simple as that may seem. I will carefully decide how I can be Supermom.

Even if you don’t have an autoimmune disease I know so many parents that over extend themselves and struggle with finding the balance between being involved and being stretched too thin. Here are the questions I’ve decided to ask myself to prevent me from over-volunteering.

1)      Why are you doing it?

I have a history of jumping in feet first to volunteer for all of the programs I can and last fall was no different. I became involved in the Halloween Party, the Art Program, and more. I couldn’t wait! I was like a bumblebee jumping from flower to flower to get in on all of the action. When people asked why I was so involved I told them I did it so I could be a part of my son’s elementary school experience and so that I could meet other parents. I’m not really a social butterfly, but I’m gonna fake it ’til I make it. If I’m honest with them (and myself), I did it because I needed to feel as if though I had purpose beyond dropping off and picking up my son from school. I was forcing myself into a part of a community that the former teacher in me misses.

 

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2)      Does your kid care?

We all believe that our kids remember every nitty gritty detail of their childhood. That they’ll remember every party we attended and every game we coached. Except they won’t. They’ll just remember bits and pieces of when you were there. What they will remember is how you make them feel. If I’m too tired because I rallied at the school then the less I can be patient and understanding at home. Shoot, I may just throw leftovers at them for dinner because I’m too worn out. Last year when I helped with the school wide Halloween Party even though I was flaring, I probably should have rethought it. Sure…  I painted games, I found items for the auction, and I decorated. Did my son care about any of this? No. He just wanted to go to the party. Did it matter to him that I had used my limited spoons to be part of the duo that put it together? No. He just wanted to pin the wart on the witch’s face and get some candy.

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3)      Is there another way to be involved?

By the end of last year I realized very quickly that I cared much more about being involved in helping my son’s teacher than I did in putting on a school wide event. I’m not made for the PTO. I’m more likely to be a Room Mom than anything else. Top that with the fact that I was a teacher and I know how much time the prep work and grading takes. To cure my “DO ALL THE THINGS” itch,  I began to help by doing things I could do at home. I cut out hearts, I decorated plates, I did things that I could do from the comfort of my couch in my pajamas and when I had time. I know that it meant a lot to his teacher and it made me feel good knowing that I helped her a little bit as she handled 24 five and six year olds day in and day out. My son thought it was great when he could say, “My mom cut those!” when he was in class. It’s the little things!

 

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So, after some trial and error I think I’ve figured out a healthy balance for being involved in the school this year. I’ll let you know in June.

 

Do you have any other suggestions on different ways to help you decide if something is worth signing up?

 

Taking Back Control

On May 30 I had my last infusion of Cytoxan…forever (I hope). The relief that comes with this is phenomenal and I am so glad to finally be done with that stage of my life.

Except on June 5th my neurologist scheduled me for an MRI of certain parts of my brain to search for lesions again. Whoopsie daisy.

Oh well. At least I’m not flaring.

So what does a normal person do when they realize they’re flare free, annoyed that their body is still trying to control them, and have an entire summer to enjoy it?

Why… sign up for a half marathon, of course! Because, you know, I’m completely normal. **Taps fingertips together and speaks in creepy hiss**

Taking Back Control

You see, as I drove away from the neurologist appointment I became frustrated. I cried at the thought that at some point the neuropathy will prevent me from walking someday in the long off future. I thought I was done with the medical stuff for a while. I thought I was able to move on and be happy and healthy. Except, as anyone with lupus knows, you can’t always be free of the wolf on your back. (I really should have chosen a smaller pet to carry around.)

The Cytoxan did help. I feel better, except for some annoying problems that won’t ever go away (vision issues, neuropathy issues, etc). I am so happy it’s summer. The boys are ecstatic. We live outside and I love love LOVE it!

So why can’t I actually be better?

As I drove home I had a conversation with my body that went something like this:

Body, what in the world do you think you’re doing?”

Me? Oh nothing. Just ruling the world in a pint sized vehicle. You know, if you were a little bit taller I would have a bigger playground and wouldn’t have to work so hard.”

“Huh?”

“Oh, yes…never mind. What was it you asked? Sorry I was distracted by my ultimate goal of ruling your life. So what do I think I’m doing? Ummmm ruling your life? Is that correct answer to this? Is this a new concept for you? I have to say, you did quite a number on me with that Cytoxan crap, but I noticed you said you were finished with it. I guess that will give me time to grow stronger again! I wonder if this time I can become werewolf sized! That would be good fun, you know? Anyways, Farah, good luck telling me what to do. You do realize I’m the one driving this crazy train.”

“Crazy train? Werewolves? Ummmm, ok then. How about this? You continue to try to knock me down and I prove than I’m in control of you. I’m taking back control, if you will. I should do something physically challenging. Something that I have to work hard at. Something I think I could handle. Oh….I got it! I’m going to run a half marathon. I’ve always wanted to start running. I’ll exercise everyday and I’m going to get in the best shape of my entire life. I’m going to be healthier than you can be strong. Boo yah! Take that, you punk ass mofo!”

“Say what??? Ummmmm, I’ll be right back. I have to consult with the rest of you to decide the best way to attack.”

“Good luck with that.”

“Bwahhahah. Good luck to you!” **Taps fingertips together and speaks in creepy hiss**

If any of you remember I’ve had one bad incident with running. This time, though, running has been fun! I enjoy the runner’s high. I hope to get a runner’s butt. It’s been great and while I know my body is screaming at me I also realize that I’m going to do this. Slow and steady wins the race.

I will take this one time, and one time only to control my body in doing something none of us thought it could do. I’m going to run and nothing is going to stop me.

We’ll see how it turns out.

See yah at the finish line!

Follow my hashtag #strongerthanawolf
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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

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

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!”

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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.

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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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