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Humiliation on Wheels

May 30, 2013 by 9 Comments

Swallowing my pride. That’s how I feel every single day I step out of the house.

Some days are better than others. I feel stronger, I feel thinner, I feel like I’m wearing armor.

Inevitably it all comes crashing down at some point. Because really I just pretend all day that everything is ok. Then the phone will ring, like it did today, and the company that provides my disability insurance wants to schedule a day long mental test. They want to find a way out of paying me and it looks like their next move is to show my brain is either sane or insane. Regardless, it is just one more test and one more trial and one more finger pointed directly at me saying “why aren’t you well yet?”

I’m not well yet because this is a chronic problem, assholes. And I am getting somewhat better but I’m still sitting with an IV in my arm getting infused with drugs constantly to keep me this way. Please explain to me how one is supposed to work while tethered to an IV three days a week for six hours a day? Grrrrrrrrrrr.

I long for the days when my inflammation marker tests would come back low and we’d all cheer. Now they bounce up and down and I don’t bother to even report the results to anyone. It’s all just so mundane and life, now. Boo. Yeah! Booo. Horray! Boooo. That’s pretty much how it goes.

Ordinarily having started horseback riding as part of my therapy would get me a pat on the back, but we just don’t talk about it. Getting excited means the possibility we will all be disappointed. I’ve also been doing more around the house (well, when I’m not feeling lazy…I’m a terrible housewife).

I’ve been trying to do more, while minding my limits. Going on field trips so I can be the Mom that can do things, not the one that stays home and does nothing. This past field trip was particularly hard for me.

If you’ve ever been to the LA Zoo you know it’s big, and has hills…lots of hills. And it’s usually packed with kids and sunny and hot. Disastrous combo for a Mom with Lupus and RA and Shogryn’s and Fibro and Raynaud’s and and and and and. So instead of packing a sack lunch and sending my 2nd grader on the bus with a gaggle of her friends, I had to do it the Erin way and rent a motorized wheelchair so I could attend.

I can’t just leave well enough alone.

This is my theory though: I can sit on the sidelines forever and keep pushing my limits every once in a awhile…or I can learn how to live with this illness and work around the hand I have been given. I will tell you right now, it would have been so much easier to stay home. It was the day AFTER treatment and I wanted nothing more than both kids off at school and me on the couch with my DVR’d Gilmore Girls and my feet up. I hate showing my moon face in public, I hate getting dressed to try to put a tent over this misshapen steroid body…staying home was the easy way out.

So naturally I couldn’t stay home.

I went to the damn zoo and rented the damn rascal scooter thingy and tried to laugh my way through it all. I did.

Because I humiliate myself for @aaronvest

But inside I was crying. Talk about pride swallowing.

I got the usual dirty looks I get whenever in a wheelchair, but almost more-so in the motorized version. It’s as if they think you just don’t want to walk the zoo.

Hey look at the fat girl in the rascal!

My daughter and I made a game of it- with her having fun keeping pace next to me if I slowed down or sped up. We both agreed we needed to try this next time at Disney, instead of having Daddy push my wheelchair. We giggled and had a fun day- with her learning about her chosen animal’s life-cycle and hanging out with her school friends. Just as it should be.

There is no way I would have lasted had I tried to walk. There is no way I had any business being there were it not for the motorized wheelchair. And even though part of me felt so very defeated to have to resort to such measures and to look like…well…to look the way I did…I’m glad I did it.

It was humiliating and freeing all at once.

I know that’s horrible of me to say. But there is a certain stigma that comes with being in a wheelchair and I was just getting used to that. A motorized wheelchair? Now come on…that’s a level that kicks it up another notch. And that will certainly take some more time to get used to. However it gave me the freedom to be present and in the moment with my daughter. It still wasn’t easy and I can’t imagine doing anything like that often…but for every once in a while, I can swallow my pride if it means giving back some “normal” to my family. Although I’m not sure how “normal” all of that is. A new normal maybe. One that allows me to do more, to be more.

Speaking of being more, I’m trying not to become just a lump of nothing while I wait for my body to right itself. I quietly enrolled at the local community college and took two online classes this past semester. I tried not to make too big a deal of it because frankly I wasn’t sure how it would go.

There is no way I can sit in a class yet. So online was my only choice. I didn’t have to be online at any certain time, which meant my endless treatment sessions and never ending string of doctor’s appointments were ok. It was what I could do, when I could do it. So I thought…what the hell? I can try, right?

No, I never finished my degree. I was working as a reporter and anchor while my class was graduating. At the time, it was a no-brainer. How could I turn down working in my field for classes in my field? By the time I was 23 I was anchoring the afternoon news and had bought my first home. However it still nags me that I never finished. Especially now when I talk to the kids about how important their education is and why they need to go to college, etc. So…back to school I go. Slowly. One class in the fall, online…maybe two depending on my health, treatment schedule, and how well I think I can handle it all.

At least this limit pushing experience didn’t require swallowing my pride as much. I’m actually very proud of myself. I’m doing my best to add things to my life that my body can handle and that give me some purpose. Not that getting up everyday and being a mother and wife doesn’t give me purpose, but I need to reclaim what Lupus has taken. I need to take back at least some of my life.

I had it all. Or at least, I felt like I did.

I want it all back. Yesterday. And it’s taking so long. And it’s so hard. And for every step forward there are two steps back and for every leap I cheer there are dangers I just ignore. Just when I think the testing is done and the blood work is over and the treatments can be spread a part a bit…I’m joking about setting up a cot at the doctor’s office because it’s all I do. It’s my life.

It’s not the life I want.

So that means some pride swallowing, some more white trash rascal scooter jokes, and maybe…just maybe…a diploma.

This battle is so much harder than I anticipated, in ways that I didn’t see coming. But I won’t let it take me, or the life I worked hard to build. I can’t. I’ve built a life that has everything I ever wanted, with an amazing husband, two awesome kids, a job I love. Before all the drugs I was at my ideal weight, I was active and happy. I will be active again. I will be happier. Lupus can not rob me of everything. There are ways around things. There always are. If that means I have to find the Erin way in other situations, I will. If that means swallowing my pride again, I will.

Yes. I’m getting my life back. New, improved, different.

Now to just convince everyone around me to join in on the fun.

Filed Under: #SUCKITLupus, Auto-Immune Menu, Feeling YaYa, Stepford Crazies

Look for the Helpers

May 29, 2013 by 1 Comment

I’m not sure about your school, but ours sends what amounts to robocalls whenever they need to reach parents and guardians quickly. Texts, emails, phone calls- they all go out in a blast in an attempt to make sure everyone knows exactly what is going on, be it a rainy day dismissal process or, like what happened recently, a possible evacuation due to a nearby brush fire.

It was the same week the nation watched in horror as a tornado tore through Moore, Oklahoma and our hearts ached an unbearable ache as we saw the destruction of the schools wrought by mother nature.

So when not 48 hours later your school gives you the option to evacuate your child, you hop in your car and drive like a bat out of hell to evacuate your child.

Water & Orange & bagel break #relayforlife

It’s about 7-9 miles from our door to school. I’m not sure how long it took me to get there but I can tell you I was glad to see the fire trucks and sheriff’s sirens flying past me on the freeway…all headed in the same direction. It meant they were there to help (look for the helpers says Mr. Roger’s Mom!) and it meant I could follow them just as fast as I wanted.

By the time my children were in my arms firefighters had already done an amazing job, containing the blaze with skill and asskicking. But needless to say, hours later sitting in the living room, the three of us sat closer, held on tighter, didn’t move from the other’s sight.

Imagine yesterday sitting in treatment with an IV in my arm when the phone rings again. I see the call is coming from a mother I know works at the school. There is another fire. This one further away and is not threatening the school in any way, but my 2nd grader saw the smoke on her way to lunch. Cue fear. Cue nerves. Cue wanting Mom.

With a gratefulness I can’t even begin to repay I got to talk to my daughter and reassure her that she was safe, that the fire was far away, and the smoke she could see was just smoke and wasn’t hurting anyone. The firefighters were doing their jobs, the parents didn’t need to come, school could go on as usual…but if she wanted, Dad or I would find a way to come get her.

With the love of our Mom friend and hearing my voice, she mustered the courage to stay calm and remained at school for the last three hours of the day. This meant Dad didn’t have to take time off work. This meant I didn’t have to miss a much-needed treatment that had to FINALLY be finished so I can begin my next round when school is OUT for the year.

Her brother, who is usually much more sensitive than she, didn’t even know there was a fire.

I talked about what happened with both kids when they got home. Reminded them just how hard everyone at school works to make sure they are always safe, and how Dad and I would never let them be anywhere near a fire if it wasn’t safe, and we’d be there as fast as we could if we needed to be.

I found myself answering simple questions like ‘you mean if there is another fire, or a tornado, or a shooter…’

And I had to agree even though I couldn’t believe the words were coming from me… ‘yes, we will be there, and they will keep you safe until we can get to you, no matter if there is a fire or a tornado or an earthquake or a shooter…’

…and my voice trailed off and I fought back tears because the last thing they needed to see was that I too, was scared.

Filed Under: By Order of the Charter, Feeling YaYa, Stepford Crazies

The Praying Atheist Child

May 23, 2013 by 4 Comments

My son prayed once. It was five years ago and he feels terrible about it. So terrible he had to break down and confess to me last night about this horrible transgression:

4 hours of walking the lake for #relayforlife then a 2 hour bounce wharehouse bday party

I was five Mom. And I wanted Bolt to be real so bad. And I didn’t know what to do. So I got down on my knees and I did that thing they do with their hands so it’s like a triangle, but not really a triangle, but you know what I mean…and I said ‘Please God let Bolt be real and come to my house.’

And I feel so stupid. And I thought I had to tell you because it’s been bothering me all this time that I did it.

I had to hold in the giggle and take him very seriously.

Honey, sometimes I say prayers in my head that I learned when I was a kid just because I think I might as well do anything that could help. I doesn’t hurt. Even if we don’t believe in God.

And he turned and looked at me, ever wide-eyed, like I had told him my innermost secret.

But Mom, that’s so dumb. I’m sorry I said ‘dumb’ but it is. We know there is probably no God. And if there is a God it’s certainly not going to make a cartoon come alive or give you what you asked for- so praying is stupid.

I took a deep breath and tried to explain.

No, prayers may not change the outcome of something. But they might make you feel better. It’s like meditating. Or breathing deeply to calm yourself. Sometimes saying things over and over can calm you and then you feel better about the situation you are praying about.

A light bulb went off.

Oh, so really they are just making themselves feel better when they pray, even though they know there isn’t a God who will answer them. I get it. I just don’t understand talking to something that doesn’t exist. Don’t they put people on medicines and in the hospital for that?

I stifled the giggles again.

Yes, they do. But for some reason our society thinks it’s normal and acceptable to believe in God. So they don’t think believing in God requires medicine or a stay in the hospital.

Well that’s dumb. Oh, I said ‘dumb’ again, I’m sorry Mom.

It’s ok honey. And it’s ok if you want to pray.

No! I only did it that ONE TIME because I was little and I wanted Bolt to come live with us. And I know there isn’t a God who is listening and even if aliens or something else is listening, they don’t care if we want Bolt to come alive and they should care about those people in Oklahoma but they didn’t care about them either. So that just means there is REALLY no one listening that can help us.

What do you think about that? Us being alone in the universe?

I think we have to help each other if we really want to get stuff done. Not pray. I mean I guess it’s ok if it makes you feel better, but you should do something for real too, not just talk to yourself and think something magical might happen. Because it won’t. You need to give them shoes and new houses. And you need to not be on your knees, because that is dumb. Oh, I did it again. I’m sorry Mom.

Filed Under: Count Waffles, Feeling YaYa, Stepford Crazies

I’d Like That Hollywood Ending Too

May 13, 2013 by 9 Comments

I almost wish I had cancer instead of Lupus.

It’s one of the many reasons my family is going to Washington DC in June. Because unlike Angelina Jolie I can’t make a brave decision (which I applaud wholeheartedly) and then simply have only scars and memories left to show my children.

I know it’s a terrible thing to say…to wish I had a disease that kills the people I love and that kills so many. But it also can be defeated. It can be prevented. It has billions in research and deserves billions more. And yes, there is a sick part of me that wishes I had to fight cancer and were given that fighting chance so I could kick its ass and then move on with my life, or lose my battle with dignity.

Instead I have a chronic illness. Like cancer it has no cure. Unlike cancer, it can not be defeated…it can only be ‘controlled.’

1.5 million Americans suffers as I do…and those are just the ones who are diagnosed. Because Lupus affects a majority of women of color there is tremendous fear that many go undiagnosed and go without medication to help them function.

Without the pills and shots I take daily, and the infusions I get bi-weekly, there is no way I could function. So in a way, you can add ‘double mastectomy’ to the list of things on my Angelina Jolie jealousy list. What I wouldn’t give to go through several surgeries to be rid of this fear and pain and ache and disorder. I’m jealous I had no choice in losing my colon, gall bladder, ovaries, uterus, cervix, or in the stroke I had thanks to Lupus. I’m jealous I can’t just have a surgery and a few rounds of chemo and radiation instead of my bi-weekly rounds and the constant fear of another organ in danger just around the corner.

I know it’s not fair to compare diseases. Or to play the ‘who has it worse’ game. I know, compared to so many, I would lose hands down. But I can’t help wishing I could knock the crap out of the ‘chronic’ part of auto-immune disorders and fight a brave fight and then move ON. Just let me win or lose already. Just let there be a finish line.

Lawmakers need to know Lupus isn’t like many of the illnesses people lobby for when they come to the Hill. Sure, we need research money like any other. However, what I want Congress and the Administration to know is our fight never ends. The children always are in fear of when Mommy will go back to the hospital. The story Angelina Jolie told of her partner, Brad Pitt, being by her side and there even being jokes…believe me, after hospital stay #50000000 you are lucky if your hand is held between arrangements being made on who will take the kids to school and what can be made for dinner between doses of hard-core drugs from the nurse.

Marriages have crumbled under the strain of Lupus. Children require therapy because they have to learn to incorporate ‘Mom is always sick’ into their everyday lives. So much so that I hesitate to turn on the news tomorrow morning, knowing Ms. Jolie will be on every station here in Los Angeles and it will inevitably lead to my kids asking ‘can’t they just cut the Lupus out of you, Mom?’

Riding lessons!

And I will have to hide in the shower, again, to cry. And I will explain, again, that no… no… they can’t just get rid of Mom’s Lupus but they can keep it under control and no, no, it can’t just be cut out, but maybe someday they will come up with a drug or a vaccine or even a cure.

If we are lucky, they will come up with a cure for Lupus and cancer, then maybe no more children will have to ask their Mommies about scars and partners will always laugh while we patients can finally rest, knowing the fight is over.

I think that is the sort of Hollywood happy ending we can all get behind.

Friday is Put on Purple for Lupus Day. Do me a favor and wear purple. And thank you to everyone who donated to help get us to DC. I’m happy to report we’ve purchased our plane tickets. We will do all we can to represent you proudly.

 

Filed Under: #SUCKITLupus, Auto-Immune Menu

Superhero: Hala and Malala

May 8, 2013 by 13 Comments

Today my eight-year old daughter astounded me, and many others, by presenting the story of Malala Yousafzai to her class.

#allhailhala as Malala

She spoke of Malala’s fight to make sure all girls receive an education while noting she was lucky to be in school, talking about Malala.

She spoke of the men who tried to kill Malala for wanting girls to be educated and when parents and students reacted, she told them “can you believe she is still alive and STILL fighting to make sure girls can go to school?”

She has a crowd! I'm surprised by the # of parents hearing Malala's story for the 1st time

And she told parents, who had never heard the story, that Malala was her superhero and she hopes she can be that brave someday.

2nd graders and their parents asked me, as I stood nearby listening, “how did she know who this was?” and without missing a beat my daughter interrupted the adults,

“I heard it on the news and my Mom told me some, but mostly I saw it on tv.”

Making sure the adults in the room knew I wasn’t the one who pushed her into choosing Malala. In fact, I had offered up many names from Dr. Martin Luther King, Jr. to President Obama. As soon as we discussed Malala, my little one knew exactly who she was doing her research on for her superhero project.

It made me realize, as a blogger, that this big, big world isn’t so big after all. Malala began her claim to fame as a blogger for the BBC and from there my very own daughter learned about her struggles and battle back from the brink of death without fear. It didn’t scare her that this amazing young woman was nearly killed for standing up for what she believes, it pushed her to think about what SHE believes in enough to be shot for.

There have been no nightmares, no questions about bad guys in the Taliban. Simply the fight between good, evil and where girls and women stand in the world.

Like many around the world I want to thank Malala for her bravery and for inspiring an entire generation of young girls who are unafraid to follow in her footsteps to do what is right, no matter the cost.

Filed Under: By Order of the Charter, Feeling YaYa, Princess Peanut

Lupus Awareness Month. You Want a KickOff Post? You Got One

May 5, 2013 by 4 Comments

Lupus awareness purple bow on my IV by wonder nurse @alina_khodad !!!!

It hits me at the oddest times. Not ever when there is an IV in my arm or when I’m talking to a therapist…but like, just now…when I see the photo of a beautiful newborn.

And this heaviness crushes my chest and my heart begins to pound a bit faster and I feel that ache.

That ache for all those things I wanted yesterday (read: NOW) that I must wait for. For all those things I will never have. For all those things that must change because life has dealt me a hand I’m not sure how to play.

I dream about secretly saving money to take the family away on a surprise cruise. And realize I have to schedule it around treatment and make sure it’s well after that one drug I get because that drug means I catch every germ on earth and I can’t be out in public and I have to make sure … you get the idea. And my dream fades.

I dream about going back to work after having an inspiration for a project as I finished reading up on some social media political ideas and begin to plan how to approach my boss and exactly who I would want on my team. And then I remember I need to be stable between treatments for a good length of time and stop getting all these infections and setbacks, even if they are small. I remember I’ll need to ramp up to balancing work and health and life while I currently have enough trouble just balancing health and life. And my dream fades.

I dream about my honeymoon over and over.

I dream about nights out with girlfriends where we dance and I need to take a cab home.

I dream about meeting my husband for dinner with friends across town. Or by the beach. Or with his co-workers. Such simple things he does all the time with many people.

I dream about running in the park with my children, laughing. I dream about volunteering in their classes.

And then I remember I shouldn’t be out in the sun long, due to the medication. I remember I can’t run, really. I remember the germs in the classes could land me hospitalized.

The ache returns. Harder. Stronger.

I want it so bad. I have been working so hard. I take my pills, I sit with that damn IV in my arm as they infuse whatever they infuse into me day after day, week after week, month after month. I try yoga. I try the diet that is supposed to help with the steroid weight gain. I barely eat now but I’m still a prednisone oompa loompa. I have done everything the doctor’s say and yes, I’m getting better but at what cost? I know there is light at the end of this tunnel, or so they tell me…but I still can’t see it because despite FEELING better there is too much still missing.

On the days I feel good I do all I can- I have gone back to school (online only as I can’t sit in a classroom yet), I drive carpool, I make dinner and breakfast and lunches and I do the best I can with housekeeping. I’ve been trying different things, doctor approved, to help my body and mind from horseback riding with my daughter to gentle yoga to just walking the dog.

I feel like I am trying so hard some days I’m creating stress by being so very determined. Mostly because I can’t stand to feel that ache. I don’t want to feel that ache. I want that ache to go the hell away and understand there is now a new normal around and this is just how it is going to be.

Only better. Because it will keep getting better. I have come this far and I will keep going. It’s slow. It’s painfully slow. But it is happening come hell or high water because it will get better than this. THIS is the new normal for now and it will continue to morph until I am happy with my life.

Yes, I have much for which to be grateful. And believe me, every single day I celebrate. Every. Single. Day. I am happy and laughing when I open a jar without pain. I have cried when I climbed the flight of stairs to our bedroom to realize I wasn’t out of breath. I’m patting myself on the back for every ‘A’ I get in class and for every treatment week I make it through without sleeping the entire time.

All I want is someone to hold my hand and tell me this is going to pay off.

This is life with Lupus.

 

Learn more about Lupus at Lupus.org

Filed Under: #suckit, #SUCKITLupus, Auto-Immune Menu