To learn more about Lupus Advocacy Day you can visit the Lupus Foundation.
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.
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.
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?’
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.
Lupus Awareness Month. You Want a KickOff Post? You Got One
May 5, 2013 by 4 Comments
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
Love Taps
February 15, 2013 by 4 Comments
I remember that feeling sitting in class, going through each Valentine and wondering if there was a deeper meaning to ‘Bee My Valentine’ with the picture of a bumblebee flitting around on that breakaway card that came in a pack of 24.
Because that is what some of us girls do. We look for the deeper meaning and hold the Valentine against our chest convinced the bumblebee was a symbol for something that was a symbol for something that was a symbol for something that clearly meant the boy who scribbled his name on the bottom loved us more than anything and we’d get married and have babies and live happily ever after.
No really.
I did this.
I still do this.
And I’m married and I have kids and I will continue to live happily ever after. Even if every day I want the ‘I love you’ and I want to hold the Valentine against my chest and dream.
I watched my daughter go through each and every Valentine from her bag last night. My son tossed his on the ottoman and only dug inside to find a piece of candy. And I realized some things just don’t change.
At one point my daughter came over to me and said “Mom, no one got you a Valentine…we didn’t get one for you.” And upon hearing those words my son immediately stopped his game (so you KNOW it’s a big deal) and rubbed his hand up and down my arm, consoling me. Truly worried and upset I had no Valentine.
It’s ok Mom, you can have one of mine.
And I explained, again, their father and I have our own tradition. And that just as he had to sign each of his Valentine’s for his classmates, someone signed that Valentine for him, and it wouldn’t be right to give it away. Even if it was very sweet.
Sweet matters. Traditions matter. That time taken to scribble that name on the bottom of the card matters. But I have learned it matters more daily, not just on the ONE day. It matters in the morning when walking out the door. It matters at night when going to bed. It matters when scared and instinctively fingers intertwine.
Today, the day after Valentine’s Day, I sat in the waiting room of my doctor’s office feeling miserable emotionally. I wanted to be clutching that Valentine to my chest and making juvenile wishes. I wanted a hand on mine to calm down my beating heart.
Instead I was sent an elderly man who didn’t think twice about walking right up to me and asking about my scarf.
Did you make that?
And he actually poked it with his cane.
Just reached on over and poked the scarf hanging around my neck with his cane! Then he used the cane to lift the bottom of the scarf up and examine the stitching.
In my head the first thing I thought was…oh please, not now. I don’t have the energy.
I explained I did not, in fact, knit the scarf but I wish I had the talent. And I smiled politely hoping that would end the conversation.
But he kept going. And going. And going.
His wife wandered out a few minutes later, I’m not sure how many, glanced at him talking to me and seemed to survey the situation…was he bothering me too much? Was he talking too much? Should she intervene? I gave her a polite smile letting her know it was alright, we were fine. She seemed to decide I had it under control and went back to writing a check at the front desk.
Over the course of the next 10-15 minutes I learned my new friend was 87-years old and his wife of 62 years (!!!!!!) was a young 85. I learned about his time in a ‘trio’ where he played guitar for a ‘blonde bombshell’ and traveled. But he always came back to his wife.
He gushed over her like they were newlyweds. Gushed.
Then his wife came over and motioned for me to move my purse. She too used her cane. Of course I couldn’t help but think of my own cane, sitting unused in my car. Thankful it’s unused right now….I obliged and picked up my bag and moved it to the ground so she could take the seat next to me.
As she took the seat her husband immediately told her I did not, in fact, make the scarf I was wearing and that I was, originally from Detroit and that my husband and I had Italian food for Valentine’s Day.
But why was I there? In the doctor’s office?
I didn’t want to tell them.
For some reason it just didn’t feel right to tell them I was there because I’m always there. Because this is my life.
I told them I was having stitches removed. And it was as if the wife knew I was lying to her.
She patted my thigh and said ‘we all have our crosses to bear, don’t we dear?’
And I cried.
Right there in the doctor’s waiting room I cried with two strangers.
Luckily I held it together and it wasn’t an ugly cry. And wise beyond their years this couple just kept talking, as if my tears were as normal as the conversation they had decided to just carry on with a woman they didn’t know in the middle of a doctor’s waiting room.
They made me laugh.
Every time the husband would compliment or gush over his wife, she would roll her eyes and say something like ‘oh, he’s just making up for all the trouble he causes’ and playfully smacked him with her cane. It was a good smack too. You could tell she had done it a million times before.
Then, as if reality emerged loudly with the opening of a door and the BOOMING nurse’s voice ERIN VEST… ERIN VEST…the door opened, they called my name, and the couple stood up with me. The 85-year old woman handed me my purse, when I should have been helping her with her cane. As they headed to the door the husband said ‘Now you know that she is all that matters…’
…and the wife looked back and me and rolled her eyes one more time and shook her head.
I was thankful to have met them today. 62-years of marriage and they were playful and loving and clearly taking care of one another. They gave me such hope.
They reminded me of why we hold that Valentine to our chest and let our heart beat fast and why we dare to dream.
I also now know what to do with that cane of mine…currently and thankfully collecting dust in the back of my car. I will just save it for years from now, because apparently it will come in very, very handy later on when I can’t lean over as quickly or reach as far to give my husband a swift tap when needed.
Progress & Pokes
February 7, 2013 by 6 Comments
Yesterday I was sent to UCLA to be poked and prodded and peered at.
I’m a modern marvel to be studied.
I came home feeling emotionally spent, tired of my life revolving around treatment plans and drugs. But also thankful I had come far enough to be able to take myself to the appointment and to be so far removed from the threat of ‘scary’ illness no one ‘had’ to come with me to just hold my hand.
But maybe they should have, just to keep my hands off of other things. Because despite my antibacterial lotion and my constant hand washing, I picked up a stomach bug and spent the night enjoying the company of the nearby toilet.
After a few hours sleep I woke up feeling much better, but not well enough to head to my treatment. I needed some rest, some tea, and maybe a little toast. I also got some much-needed perspective.
I got a stomach bug and it didn’t land me in the hospital.
I got a stomach bug and it didn’t land me nearly comatose and in need of my husband’s help.
I got a stomach bug and it only lasted through the night, not extra hours or days which usually happens to me when I get an ordinary virus.
I got a stomach bug and like a nearly normal person I could function during and after.
With my immune system there wasn’t much I could have done to avoid getting sick. But when there is something I can do, or you can do, it’s a no brainer. In fact, in some cases I count on you to help me remain healthy. Because this time I was lucky. It was a stomach bug that my body handled. But it won’t always be so easy.
The last time the family was hit with the flu everyone had it for about 24 hours. I had it for a good 72 hours and was watched over by my brother. He held vigil by my bedside as I moaned and sweated the evil illness out of me. Even when I do my best to protect my fragile immune system, bugs get through. I then ended up admitted to the hospital as doctors managed my pain and dehydration, my labwork showing influenza A in my system.
That’s where you come in. That’s where herd immunity comes in. That’s where vaccinations matter. Every type- from a simple flu shot to chicken pox to whopping cough and measles, mumps and rubella.
Liz over at Mom101 has a great reminder as to why we need immunizations and why, here in the states, we take them for granted. You can also contact your Congressperson to ask them to make global vaccinations a priority. No, they wouldn’t have stopped me from getting that stomach bug yesterday, but they do save the lives of millions worldwide who contract many different diseases that can be easily contained if only everyone participated or could be immunized.
As someone with a suppressed immune system I am begging you to take vaccines seriously and to join the effort. Do not take modern science for granted. Remember why we need them and why people like me need you to get them.
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