Humiliation on Wheels

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.