Home Sweet Not-Really-Home

I’m in Henderson, hanging out at my parents’ house (I say not-really-home b/c this is not where I grew up). I love this place even more than I used to, though, now that I have my new concerns.

I wish everyone with MS had a house like this – all the rooms except the bedrooms are in the middle of the house and none of them have doors. Open one-story floorplan = much easier to get around!

Things with Adam are really great. He’s at home while I’m here, and we’re both relaxing. I know we’re secure in our relationship b/c we don’t have to be on the phone or IM all the time, but when we are, it’s very sweet. I feel really stable and safe with him, and I’m so excited that I’m doing better because it means we can do things together that we used to love doing regularly – like walking to a park and talking and swinging on the swingset and whatnot. Besides, I’m sure Brisco will be very excited to go on more walks too. 🙂

As for my health, things are pretty fantastic right now. I am only having seizures after 9 at night and those mostly only occur if I forget to take my pills on time. I’m in remission w/ my MS, and the weather has been so great that I haven’t had to deal with any numbness/tingling/serious pain in several days!

The thing that’s surprising to me is this: The better I get, the more I *really* want to take the bar exam. I mean, about a year ago, I prepared for this test HARDCORE before being put in the hospital. Whether I end up working as an attorney or not, I want to be licensed so I can say that I’m an attorney, since I’ve done ALL the work to get there except taking the test.

I know I’ve said on my other journal that I’m so happy to be done with law, I can’t even express it — and that’s true — but if I was willing to invest that many thousands of dollars in education and in prep for the test, to threaten orderlies and nurses at the hospital to get my books, and to have to be given heavy medication to stop studying, I probably *really* wanted to pass that test before all this happened.

Thus, now that I’m feeling better and remembering all that, test prep for July begins soon. Maybe even today if I feel like it, but I’m trying to enjoy this time with the family as a vacation from stress and my obsession with working. (Hey, I know myself.)

I hope you’re all doing well. Don’t forget, the MS Walk is coming up!

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MS WALK 2009!

I know I haven’t been pimping the MS Walk this year enough, but there’s one month left – so I figure I ought to put some oomph into it.

Join the team!!! You will be signing up not just for a day of fun with some totally awesome people, but also for exercise and the satisfaction of knowing that you’re helping to find a cure for MS *and* my bitching AT THE SAME TIME. Win, win – seriously. 🙂

If you’re elsewhere or simply not game to walk with me, Adam, duckierose, weiskind, gethenix, and abitbattyhere, you can always do what nonaweisbaum has done. Join the team, fundraise from WHEREVER you are, and have it go to our team’s effort.

Keep in mind, I will be walking with a ton of ice-packs in my backpack because I don’t want to raise my body temperature too much, and I’m really hoping to make it all the way through the walk this year. Then again, there’s nothing saying we actually *have* to walk if we don’t want to or if the weather sucks. The point is to show solidarity and raise money and awareness. Exercise with friends is just a plus.

Want to know how proceeds from the MS Walk are used or other ways you can get involved in the fight against MS, please visit The National MS Society Website.

Click here to visit my personal page and either donate or join my team.

Click here to view the team page for MStery Walking Theater 3000 to see our awesomeness as it unfolds.

Any help you can give, including just forwarding this info to friends and family is much appreciated. I want this disease GONE.

…I got nothin. Or so I thought when I began this post.

It’s been a while since I posted here on In It For The Parking.

I have plenty more bracelets to show you, but I find myself asking why I’m doing any of this.

When I started IIFTP, it was because I was just out of the hospital with a fresh seizure disorder, and I wanted to help make a difference in the world even though I’m a shut-in.

Things with Adam are more than great when I don’t spend my days researching MS, treatments, info on drugs, info on Seizures, etc. He said he wanted me and not MS-Rae, and that’s what he’s gotten.

Truth be told, life has been far more happy and tolerable not constantly reading complaints of fellow MS sufferers – not working to inspire people when I’m anything but inspired myself.

Ultimately, this journal’s for me – whether I say it’s to help people – whether it’s a way of reaching out – whether it’s a source of a little income – or whatever. And right now, it’s not working for me. Maybe creating this journal was just was an attempt to think that anyone could learn from my experiences, and that I could make a difference in the world just by being myself.

I feel like I have to choose between having a life about MS and a life with MS. I’d much rather have one with and not about.

I’m not saying I won’t post the other bracelets. I’m not saying that I won’t come back to this and post more or that anything I’ve posted here was stupid… just that spending all your time dwelling on illnesses when you can’t do anything to change them is an exercise in frustration and time wasting. I could spend that time doing just about anything else – including things that make me less stressed and more happy.

Of course, I’ll post stuff when I see it, but I’m not going to be pushing myself to read forums or communities that just make me more sad or hypochondriac-like every day.

I’m thinking it might be time to go back to how things were before DX by choosing to live my life as best as is possible and only think about MS or the seizure disorder when they make themselves non-ignorable.

There have been far too many times over the last 9 months of my life when I’ve felt like nothing but a prisoner of my illnesses. I’ve felt small, ineffectual, pathetic, and sometimes worthless. There are other times where I was just proud of myself for bathing on my own or even walking from my bedroom to the bathroom without help.

Life is a crazy fucking thing – no lie.

“The plan” was to finish high school with honors, then go to an IV league college, start a business, get married, have kids, live happy life. Then it became finish college, get a job, get married, have kids, live happily ever after. Then it became deal with the divorce (before the age of 25), move to LA, finish law school, pass the bar, become an attorney, get married, have kids, be rich and happy. Now… well, now, I just want to be happy.

Don’t get me wrong, please. I totally want to marry Adam. I definitely want to have kids someday… but all the “rush” is out of me. All the constant ambition, drive, and tenacity that I used to define myself by just keeps getting me either sicker, more depressed, or both.

Every day, I apply for at least 4 jobs, some days as many as 12. The number of administrative gigs I have to pass up because I can’t drive is INSANE. The fact that I can’t drive means that I can’t get to a temp agency, and even if I *could*, I couldn’t pick up the phone in the morning and get an assignment for the day because I’d have no way to get there.

It’s as if the economy, being over-educated and undervalued, and having a disability is pushing me to do the very things that hit my pride the hardest… applying for food stamps and welfare.

Sure, I’ll go to the DMV to get a placard. I fought that fight, and realized it’s better to have the parking than not to. Hell, it became my mantra.

“I only developed MS for the parking.”

It’s great, that false sense of security you can give yourself by feigning control over the very thing that pulls the strings of your fate… except when you convince yourself that you have control and then feel horrible for not actually being able to control it… for missing friends birthdays… for not being able to visit family far away because they’re afraid they won’t be able to take care of you… for not contributing enough in your own mind to your family…regardless of whether or not they say that you’re contributing plenty.

I’m learning just how much I’ve taken for granted in my life. There are things that people never think of, and that I want to scream to people who don’t realize it…

IT IS FUCKING GREAT BEING ABLE TO DRIVE PLACES!
When people complain to me about traffic now, I understand, but I find myself feeling snarky – like, “Mo money, mo problems… bitch, please. Can a sista get a ride?”

IT IS TOTALLY FUCKING GREAT TO HAVE THE ENERGY AND ABILITY TO WALK, RUN, EXCERCISE, FUCKING WASH THE DISHES AND FOLD ALL THE CLOTHES ON THE SAME DAY!
I don’t care what you say about hating to do chores. Being able to do more than 3 chores a day without taking serious uppers and still exhausting yourself, is not just normal, but AWESOME. Really. You just don’t realize it.

IT IS AMAZING TO JUST BE ABLE TO GO TO THE GROCERY STORE AND BUY EVERYTHING YOU NEED FOR THE WEEK BECAUSE YOU REMEMBER WHAT YOU NEED AND CAN GET THERE AND BACK EASILY!
I write out grocery lists, then forget the list on the way to the store, get there, get confused as to why I’m there, grab something for the meal at hand or sometimes even just an apple, and walk home. It makes me crazy. I’ve even started emailing myself lists so that when I’m at the grocery store, I can look at my Blackberry, and it will tell me what I need. Of course, then there’s the question of how the fuck I’m going to take umpteen bags home when I’m walking…

But more than any of that –

It REALLY ROCKS to be able to go through your day, thinking about what’s at hand and not having to calculate the risk involved, your body temperature, the time of day, your ability to comprehend what’s going on or have the motor skills to make it happen.
I really don’t think that I need to explain that one.

You all know me at this point. I’m very open, honest, blunt – hell, I over-share and I know it. But I don’t think the spoon theory covers it… at least not for MS.

MS for me is far more like being a puppy. You look good. Everyone who’s worth a shit likes you just for existing and being friendly, and you can do a lot of things – fetch shoes, play ball, be a good listener, give snuggles, guard the house… but you can’t go out on your own, you can only do so much without hands, and you basically just want to sleep all the time. You get really excited when someone comes to the door. You get SUPER-DUPER excited when you get taken out to play, and riding in a car (especially to somewhere you want to go) is SUCH a luxury. You have to be taken care of, and it’s a damn good thing that you’re cute and lovable, or no one would choose to take you on as a responsibility. At least I’m not accidentally peeing on the rug… yet. (Bladder control is a big problem for many MS patients.)

I think maybe I’ve been holding back on this journal because I hate how things are right now, when I know that sharing my struggle is the best thing I can possibly do with this blog. The struggle is what unifies the chronically ill. We hold such great emotional strength, not because we want to, but because we HAVE to. Constant complaining doesn’t help anyone or anything – it only alienates you more, except to those who really understand your situation because they’re in it themselves.

And then there’s the guilt. The crushing, all-consuming, never-ending guilt that comes when you realize that your family has to sacrifice their time, money, social agendas, and sometimes dreams just to take care of you. You never wanted any of that… and yet, even though they all do this out of love for you, you know that you’re the reason that they’re not as happy as they could be. You know you’re the reason they don’t get to take the vacations they’ve saved for or the nice clothes they want or even the ability to go to the movies at night.

And everyone says, “It’s not you! It’s your disease! Blame that!” And sure, I hate MS. I see why I should blame it… but the thing is, if it were only the disease, it feels like it would be something that can be defeated.

“SUNDAY, SUNDAY, SUNDAY!!! ME vs MS – NO HOLDS BARRED DEATHMATCH!!!”

Gee, I wonder who would win *that* one? The person with life or a disease that simply eats away at it?

It’s just inescapable that someone with chronic illness will take that illness as a part of themselves, because, well, it IS! It’s probably the only thing about you that you detest about yourself that you can’t change and that you have to learn to deal with. So you say you’re sorry all the time, and you really ARE sorry for anything that remotely upsets your family or friends that is the fault of your disease, and saying you’re sorry makes people think you have control that you don’t have but that you think you ought to have. Then they start liking you less because by saying that you feel bad for asking them to help you and causing them to be less happy, they become convinced (BY YOU!) that if you just tried harder or sucked a little bit less, you wouldn’t need to be sorry and things would be fine…

And now here I am, wondering what is now “fine” for me. I guess I’m fine right now… even if I’m not.

Bracelets – The Robin

This is the Robin! It was made as another Christmas gift (sensing a pattern here?) for my beautiful, wonderful, awesomely classy friend rawee1.

This faux-pearl bracelet is shown with the “Faith” circle.

It can also be ordered with other word circles, tags, or medical IDs.

The Robin – without Medical ID: $20

The Robin – with engraved Medical ID: $40

Bracelets – The Paige

First and foremost, a big thank you to garphoto for his help with taking pictures of these bracelets!

This bracelet is named after my good friend paigeriffic. She told me her favorite colors were rainbow colors and turquoise. I made this bracelet as a Christmas present that she just hasn’t received yet. (Yes, I can procrastinate that much.)

Here you see the “imagine” circle – one of the options for people who don’t want to attach the bracelet to a medical tag.

This bracelet is $20 including an imagine circle and shipping.

For those of you who want medical tags as well, the cost is $40, which includes engraving.

Comparable bracelets are available at other retailers for $80+

All of my bracelets are made with elastic so that you can slip them on or off of your wrist if you have a hard time with the clasps. I have several sizes of clasps available. Regular size is shown, but I also have bigger ones for people who prefer clips that are easier to grip.

Stuff and things…

I know it’s been several days since the last time that I updated this blog. For that, I genuinely apologize to you, dear readers.

I’ve been having a hard time recently skirting the line between me and MS-Rae. My beautiful boyfriend and I have had several difficult, but important talks over the last week or so. He wants me back to the woman he fell in love with – he wants at least a day where MS doesn’t interfere with our normal lives. He wants me to not define myself by my disease, and that makes sense. That makes it kind of tough to balance things, especially with this site.

I’ve been so depressed, wondering if there ever will come a day where MS doesn’t define what I can and can’t do… I don’t think it’s likely, but I am still hopeful. I have no appetite right now (which you think would help me lose weight); I have no motivation to do the things that I enjoy, and despite the increased ability to do physical things, I’m so worried about potential problems occurring because of it, that I am afraid to *really* work out hard enough to make a real difference.

Adam and I both worry about me pushing too hard… but I am worried about my level of weight gain, despite eating healthfully. I just feel like I can’t win – at least not even close to quickly. At the very least, I’m doing well enough that I’m slowly-but-surely getting my identity back. I learned patience with the disease…. now patience for myself… that is a new skill to learn.

I am still having seizures at nights, here and there. I called Dr. S, and they want me to do another round of lab work to see if I’m at a therapeutic level yet. I can’t believe that 9 months have gone since my time in the hospital and that I’m *still* having seizures. I wonder if it usually takes this long to get seizure disorders under control.

As for the bracelets, I have fantastic pictures to fix and post, thanks to Gar.

Don’t worry – I’m cowgirling up as usual.

Happy for the day:
Diet Hansen’s Soda – no Aspertame, no calories, and no caffeine with lots of yummy flavors.


Diet Tangerine Lime, I think I love you.