Wait… What?!

If you truly understood, you’d know that I have been the “Working Dead” for the past 8 years! The only time I felt truly good was when my body had purged these drugs that are trying to prevent THE REAL DISEASE from rearing its ugly head — And even that ended with me losing control of half of my body and an astronomical amount of IV steroids being pumped into my system followed by losing 35 pounds of water weight in less than 20 hours and a stay in the local hospital! The rest of the time has been plagued with me oftentimes puking, shitting, or floating down a river of snot on my way through a work day. There is no welcome wagon for me, sweetie — I’m the grizzled hardcore who’s been here a lot longer than you.

Welcome to the world of the Chronically Ill!

That may sound melodramatic and maybe it is — but, you’re talking to someone who’s been pushing through a workday “wounded” for a lot longer than I let on. And this disease — You know the one that steals every ounce of energy I have, threatens many of my mental faculties, and destroys a good deal of my physical prowess, but leaves me looking pale and lovely for the world to see — The one I deal with every day yet no one recognizes because my chemo drugs don’t leave me hairless or green, just susceptible to every fucking illness that crosses my path? Yeah, that one. That robust, cunty bitch named MS gives me every right to look at insensitive people and say “WTF was that?”

But — I also know we all have to deal with our own hurts, problems, and ick and it’s really quite hard to step outside of our own bubble to view the world through clearer eyes. So I try, using a lot of restraint and understanding, to ignore the comments or insensitive remarks. Sometimes, I’ll try to convince myself that the other person is way worse off so that I don’t think the cruel thoughts lurking behind these tired eyes. Sometimes I actually start to believe it and buy into my mantra of “I really do have a very mild course of disease” so I can just smile through my day with a fake grin of delightful, happy, chubby-girl bliss.

Why? Because that’s what people want from me: A smile, a joke, a positive remark, and a push forward through the rest of their day… And they get it in abundance. No one likes to hang out with a downer, don’t you know?

But make no mistake: My days are not fun. I am sick more than I am well. I suffer through every fucking day so I can live some semblance of a life beyond what has been written on my god damned page. And this annoyance, this fire, this pissed off regime of disgust is what fuels this machine through everything I do. So maybe that unwatched pot ready to boil over feeling when you’re standing next to me in line or that car out of control sense you get from me when we talk isn’t so far off. Damaged people are dangerous because we know we can survive — The jury is still out on you.

But also understand, as a person, I am not mad at you. I’m not mad at the world. I’m not even mad at the people saying these things. I’m mad at me, my body the hand grenade, and whatever god you subscribe to — Or maybe fate… Let’s blame that bitch. Perhaps I can let my anger flow into every bad decision I ever made… because I’m sure one of those made me more susceptible than the next likely candidate to get this.

But what all of this ranting really boils down to is that in five minutes this anger will be gone, evaporated, pushed under that blanket of calm I carry every day and reneged. I’ll laugh. I’ll smile. I may even mean it…

But try as I might, I will never be well.

I have been struck by the strong desire, NAY! I have been overtaken by the impressing need to travel lately. I can’t explain it, but just an hour ago I have entertained the fantastic notion of purchasing a plain ticket to, well, anywhere that’s not the US (and fairly temperate) and going there. RIGHT NOW! I have, over the course of the last few weeks, planned and re-planned vacations to England, Spain, Germany, Egypt, Tokyo that I will never have the means to take. I have poked and prodded and hemmed and hawed about the disdainful trip my family wants to take to the vomit-inducing, wallet emptying, and utterly fraudulent Disney, pushing instead for a real trip to real places…

I am truly considering foregoing the Disney trip and doing something else while the kids and Jas go and shake hands with fake princesses and roam the streets of fake Spain while the giganticorp hides rapes, assault, and theft beneath a lush green carpet of cash. Maybe I will take that drive to California I always thought would be great. Photographing the trek across the US in true Hollie style. Cruise up the coast and visit the Pacific Northwest before heading back home. Of course, that doesn’t settle well because of the time period. They are wanting to go around Christmas 2014 and that does not bode well for road trips in these parts. Maybe I’ll work through their vacation and take one of my own in the Spring or Fall. Maybe I’ll head to Europe and be a true fish out of water? Lot’s of possibilities here. (Of course, I will probably end up being shoehorned into Disney or staying at home.)

Disney on Ice: The Unhappiest Place On Earth

This seems to be a trend with me. I get sick. I get scared. I get sicker still. I go introspective and, eventually, give up hope. Instead of fighting or ignoring my symptoms and pain, I start accepting my fate as a lonely, warped, sick person… This goes on for much longer than any person should have to deal with. It goes on so long that I actual write letters to all the people I want to remember me. I start planning my funeral and getting paperwork together (because I know that I can’t hang on much longer like this.) I finally get to a point where I KNOW I’d be better off dead and suspect so would most people in my life…

And then, like magic, I start feeling more like myself. A little scattered maybe. A little frumpier or more tired, but I start feeling slightly less raw around the edges. I begin building myself back up. I start being a little crazier. A little more impulsive. A little more fun.  And then, this need for metamorphosis hits me. A very real need to create, become, change, and travel hits me all at once.

Metamorphosis: I’m Turning Into a Bug…

 

Now, I must admit, this may be due to the meds. There are warnings all over the papers that this particular med, while it is less likely to kill me outright, does have a tendency to increase or intensify emotional and behavioral attributes and/or issues. So, slightly insecure becomes “THEY ARE ALL GONNA LAUGH AT YOU!” A little high strung becomes “WHAT THE HELL ARE YOU PEOPLE DOING JUST SITTING THERE?!” A few pounds too heavy becomes “YOU LOOK LIKE A RHYNO!” A severe dislike of confrontation turns into “RUN, RUNNER – THERE IS NO SANCTUARY!” Feelings that no one listens or you aren’t respected or no one cares become “YOU WILL LISTEN TO ME RIGHT NOW DAMMIT! I AM SO ALONE!” You get the picture. So, all these things inherent in me, whatever they might be are intensified, increased, almost advertised for the world. Little blips telling EVERYONE my issues and flaws… Great… :/

This is not my first Avonex Rodeo. I was on it for 3.5 years when I was first diagnosed. I didn’t have any troubles with the shots. Those were easy and offered some sort of ritual in the midst of chaos and uncertainty.But after I was off of it, I noticed there were behavioral differences  in me that I couldn’t really see at the time. Was that Avonex? Or was it just me? Am I different now due to the benefits of age and wisdom or was I that way then due to the influence of this ridiculous medication. I guess we’ll just have to wait and see.

Only time will tell.

Doc says the vomiting and gastric infection is a gamble you take with immunosuppressant therapy. Keep hydrated. Go to hospital if dehydration gets worse. Take two of these and leave me alone kid. It’s Saturday night!

Very hard to stay positive. Very hard to stay happy. Very hard to stay anything at all.

The world keeps moving and I keep slowing down. Even after an ok week, I now end up here. Impossible not to ask why.

Mae thinks I’m dying. Told me she wants me to live forever. I told her that sounds good in theory, but think how crowded the earth would be if no one ever died. Plus — You can’t become the stuff of legend if you live forever!

I told her that dying is part of life but that I had no plans to do it just yet. We talked about how it would most likely be a pattern of me sick. Then mostly well. Get sick again… Wash. Rinse. Repeat.

I say things to comfort her. I try to make her smile. I’m just so glad she’s my baby.

Sometimes we play a game where I tell our future. Miranda has no patience for it. Her path is her own and she has no time right now for the decrepit and ill.

This game of imagination is always happy and there is no downside… And I always tell her it will change next time we play because, well, it’s a game.

Sometimes, she runs off to the circus and becomes a graceful aerialist. Sometimes she is a doctor, saving mankind. And sometimes, she’s a mother who loves her children very much.

Those kinda make me cry. How do I show her how much I love her at such a young age? If I died tomorrow, how would she remember me when she’s my age? Would she really remember me at all? Or this shell of who I was before? A caricature. A vessel. A pod.

Being this sick on top of everything else scares me. Terribly.

People don’t get it. I can’t hurt you. I don’t have that in me. Not anymore… Probably not really ever. But you, even if you don’t even know you’re sick, can kill me. You can slay me with a hug or a sneeze or an unwashed hand. Life is just that way for me.

I try to explain there is no cure. Just lots if hard decisions, none of which are very palatable. Hell, most the time people don’t even understand what’s wrong with me. Of course, I have my handy-dandy over-zealous soldiers and hungry rats at the ready for explanation. It’s how I define my disease to the children… It also works great for adults. Ask me sometime… If we’re sharing hospitality, I might even pull out the plastic army men!

There are the dismissers, always. The ones who know someone or met someone and the “But she looks fine” folks. I guess if I could wear my glowing brain on the outside, you’d be happier with how my disease looked… Maybe if I lost my hair or was completely unable to walk it would be more recognizable to them as something truly painful.

The flavor of treatment this time around was 5 days of high dose immune suppressing IV steroids, followed by DTs, then an oral course that was supposed to help with those. The oral course continues through Monday.

Then, of course, it’s back on the walking death that permanently makes my body a tomb and systematically knocks my immune system down to about 25-33% of you fine, normal, healthy people.

t’s a nasty little bastard. Has stopped hearts, caused convulsions, caused skin cancer, caused unusual birth defects and late term abortions. It is really awful.

And if it didn’t do exactly what it is supposed to do… If it didn’t have it’s one benefit, I wouldn’t touch it. But it stopped my disease from progressing when others hadn’t. And that means, I’m stuck with it. Like the drunk relative at the reception, bad jokes, lewd comments and all.

However, right now, I’m just plain sick. Rotten, muscle-cramping, gross, stomach flu: sick.