Posts tagged attitude

Happy Saturday!

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Happy Saturday, party people!

What’s new with you? Not a hell of a lot going on here. I know that this week has been bereft of entries, and sometimes that happens. At least when I do post, I try to make it quality.

This week, overall, has been a good one. It’s definitely had its ups and downs dealing with PTSD, though.

I think that its safe to say that there’s no comfortable way to tell someone in your family, who you care about, that they have triggered you, and not to engage in a particular activity around or with you again. You’re already neck deep in awful, so anything that comes out of you is going to be noxious.

And there’s certainly no comfortable way to say you’re sorry to friends when you’ve acted out, as though the false reality were real. It’s just a big ole helping of humble pie with a side of “fuck you.”

Fortunately, I know what humble pie tastes like and am okay with admitting my wrongness the moment I realize how totally not-right I am in situations. The unfortunate part is how frequently it happens, surrounding the economic climate, politics, and utter catastrophization of our future.

So I avoid politics now. I avoid political discussions, especially with Republicans. I avoid the news, which is really just set up to scare people about things they have no control over. I use a credit union, and I’m not scared of my birthday this year. 12/21/12 (Woo!)

I try to focus on the things that I do have control over, like the food that I eat, the people I hang out with, the jewelry I make, and the pets for which I care. There are better things to think about, like what to make for dinner.

Positive attitudes are crafted by choice, not by chance, and things only improve with a positive will.

I knew when I woke up this morning, I was gonna have a good day. What about you?



Threatening to switch meds just to get help.

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4 days and no posts.

It’s shameful, really. I could at least translate a chapter of the Tao, one might think… but life hasn’t given itself to that, or the posts would be there.

For those of you who are clucking your teeth, know that I have self-berated.
For those of you who are giggling, know that I am smirking as I write this.

It’s hard to believe that I just got off the phone with Shared Solutions, letting them know that it’s been more than a month that I have been without Copaxone on their account and that I am suffering through a relapse – and that if they’re not gonna help me, I’m gonna have to switch meds. Rebif is givin a year free right now, though I don’t know how wise it is to go that route. I am done with my Medrol dose pack, but I am still dealing with numb tinglys off and on throughout my side and top of my chest and my left pinky and ring fingers. It’s weird typing with them, but it can be done — mostly because I know to will my way through it. I’m sleepy all the time. Even with ZipFizz. I don’t care that it’s not Paleo. I’m tired. Very tired.

Right now, I’m just trying to keep going. I don’t think sleeping all day is the answer, much as I wish it was. Instead, I think it involves a smoothie, picking out some recipes to try this week, and convincing Adam to make a trip with me to Trader Joe’s to pick up some bananas and salsa (not to be used together!) and Whole Foods for whatever other ingredients we need.

In the battle of Rae vs. the totally lame, I cannot let lame and boring win!!! Mostly because that means I’m bored. And I can’t have that, now, can I?

Hope all you readers are rockin it out in the free world… or some other awesomely awkward quote that would befit a reading by Paul Rudd. Peace.

mswalk

Who Can You Trust?

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One of the things that really drives me nuts about having multiple sclerosis is that there are so many unknowns about the disease.

In Europe, for example, CCSVI (Chronic cerebrospinal venous insufficiency) is widely thought to be a leading cause of multiple sclerosis, while here in America, we still believe it to be largely auto-immune. Because of the difference of opinion, many more people in Europe are likely to get the surgery to fix their bloodflow.

Many people posit that the difference in opinion exists because our neurologists here in America are “in bed” with “Big Pharm” while others say it’s because we’re extra cautious and want to make sure all the appropriate studies are done before having vein surgery that affects our brains!

And then, of course, there are the diets that have been researched and designed to help us! The Swank Diet, the Best Bet Diet, the McDougall diet, the MS Recovery Diet, the Wahls Diet, the Paleo Diet, and the fact that throughout the USA the hardline recommendation is simply to stick to the FDA’s recommended diet for a healthy heart! :-P

Clearly, you can tell my opinion on that. Our neurologists are not food scientists or nutritionists! But they are brain doctors who are looking out for your best interests and will tell you when the work you have done for yourself is making a positive difference in your health.

So, who do you trust? I say trust yourself.

Only you know what your body feels like, so only you will know what difference a change in diet makes to your condition.

I was never an advocate of a diet before I tried the Paleo diet for 6 weeks and saw a massive change in the amount of physical pain I was enduring. Waking up without being in pain after 5 years of waking up in pain was like having a huge burden lifted off my shoulders. Your experience may vary!

But you’ll never know if you don’t let yourself try something different, in earnest, for a significant period of time.

Besides, what do you have to lose?

Disabled Does Not Mean Depressed

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Every once in a while, I know that I’m hearing what I need to hear right when I need to hear it.

I don’t usually make a strong request of my friends that each of them do something, but I ask that you please watch this if there’s anything in your life that’s making you anxious or scared.

It’s only about 5 minutes long, and it changed my whole perspective today. I’ll probably watch it several more times.

This is what I mean when I say that it’s all about attitude. I hope so much that like him, I can make a positive difference in the lives of others while not feeling sorry for myself, always remembering that I’m living a good life.

Mortified.

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Well, Halloween was a mixed bag.

Prior to last night, it had been more than 6 months since I last attended a party thrown by anyone in my group of friends. First, I was focused on graduating law school, then taking the bar, and then *poof* I was in the hospital and recovering. For me, social butterfly that I used to be, it may as well have been damn near forever, since I don’t see the majority of the people who go to these parties at any other time. Shoot, some of them don’t even have blogs! (I don’t understand either… I mean, it is 2008, and I assure you, they are intelligent, funny people!)

Anyway, yesterday, I determined, would be my great relaunch into the social scene. Looking back, it probably wasn’t the best idea, but it was something I had to do. Ultimately, I don’t regret doing it.

My costume was going to be very simple – I was going to BE disease. (Hey, if you can’t laugh at yourself, what CAN you laugh at?) So the idea was that I’d look all goth-y and hand out disgusting-looking but good-tasting cupcakes that bore the names of diseases on them.


I really just couldn’t think of anything funnier than walking up to my friends and “giving” them “Scurvy” or “Lycanthropy” or any other much-less-tasteful disease. (Hey, what’s a little “crotch-rot” between friends?) :)
I got about halfway through baking the treats when I realized that I might not make it to the party that night. Despite the fact that I’ve been doing better with my treatments, I had more seizures yesterday than I’ve had in weeks. Adam and I think I might be going through an MS relapse, but we’re not sure yet. I still couldn’t let go of the idea of seeing my friends, so I sucked it up and made those cupcakes like it was my JOB.

I couldn’t continue to ignore my body though. It’s a hard thing to do, especially when you’re unintentionally twitching. I called the party hostess and told her I was just going to pop in to say hi and drop off the “diseased” cupcakes and then leave. I didn’t have the energy to get into costume, but I felt like death warmed over, so I figured the costume was complete.

I forgot how many of our friends are crazy shutterbugs and how photo-sensitive I can be from time to time. In the 20 minutes I was at that party, I had 4 seizures – and they weren’t small. I ended up on the floor in both the kitchen and the back yard, and I hadn’t even been drinking!

I was mortified. There, in front of almost everyone I know in this city, I was on the floor, writhing uncontrollably. I was sure the world would stop or people would freak out or that no one would want to invite me to anything ever again. I was certain that I’d just become a pariah.

But I was wrong.

Not only did the party NOT stop, but the people who were right next to me (aside from one of the party hosts) didn’t even seem to notice. Everyone kept having fun, gave me hugs goodbye, and I went home, albeit with my tail between my legs.

Walking to the car, I felt pathetic. Why had I even tried going to a party when I knew I was out of spoons and felt terrible? Why had I allowed myself to believe I could go out at night and have a good time when I haven’t been able to in so long? Social lives, parties, and fun are for healthy people – and I had DARED to pretend to myself that I was healthy.

What a load of crap.

 

This morning, I am proud as can be that I went to that party because I learned some extremely important things:

  1. No one notices my disability as keenly as I do. What is earth-shattering to me may be barely perceptible to others – so I don’t need to be as self conscious as I have been. At large, raucous parties where people are being silly and drinking, it’s hardly a social faux-pas to find yourself laying on the lawn or going to find someplace quiet to hang out. Apparently, NON-disabled people do it all the time! (Who’d have thunk?)
  2. Going out and seeing friends, even for a very short time, is good for your soul. I must have hugged 20 people last night –minimum. Almost every one of them said, “Oh my God! Where have you BEEN? We’ve missed you!” It reminded me that I have a much bigger support network than I’ve been tapping into, and that real life social interaction is absolutely necessary to maintaining a positive outlook on life.
  3. It’s important to remember who you were before diagnosis, who you want to be in the future, and what you can do in the present to maintain your sense of self. For a few months now, my life has been turned upside down. No bar exam or law school to study for, no demanding job – nothing to force me to push forward towards a goal… nothing demanding that I overcome adversity to succeed. Oh yeah, except for this whole “living well with multiple chronic illnesses” thing. I often forget that just living well is its own goal, and that the goals we set along the way are just “how” and not “why.”

In the end, Halloween 2008 was good. Despite my body’s tricks, I managed to do what I wanted to do. I got some much-needed face time with friends – and despite the sickly-sweet Hallmark nature of this statement — that’s the best treat I could ask for. :)

So… what’s this all about anyway?

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Initially, when I came up with the concept for In It For The Parking, I was thinking I would document and discuss what life is like with MS… but then I realized that MS is different for everyone. Once I had a seizure disorder, I figured, “Hey! I’ll do a site for people with seizure disorder! Or with MS AND Seizure Disorder!” but that would mean that this site would exist for maybe 20 people in the whole world.

So, I looked at my life, my friends, and what would make the biggest difference to my (at that time theoretical) readers. I realized that I didn’t know anyone who hasn’t at one time or another come into contact with chronic illness. Whether it’s cancer, leukemia, muscular dystrophy, autism, fibromyalgia, or any of the hundreds of other conditions that require sustained lifestyle changes, caregiving by family and friends, and a positive outlook.

“In It For The Parking” summarizes my attitude towards my disabilities. I always joke and say that I’m just in it for the parking – or in it for the perks (like riding the carts at the airport!).

Remembering that I am not defined by my illnesses and recognizing the benefits (whether hidden blessings or not) of my situation are two of the ways I cope with the changes in my life and the frustrations of being chronically ill.

This blog is all about living well, finding your happiness, maintaining positive relationships, and caring for ourselves and our caregivers.

Every day, we can find ways to bring joy to ourselves and others. This way works for me. :)

It’s all about attitude.

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I was diagnosed with MS during my 4th semester of law school. For those of you who are unfamiliar with the way law school works here in America, it’s a 3 year (or 6 semester) program to attain a Juris Doctorate. The old adage goes like this, “First year, they scare you to death. Second year, they work you to death. Third year, they bore you to death.” This is only mostly true, since you’ve got more electives your third year.

In any event, when I had my first serious MS exacerbation, it was March 20th of 2007. At that time, I was working on a 30 page seminar paper, a 17 page contract, and was fighting to keep my scholarship. The entire account of my event that day was 3 lines long, with the title being “Today’s fun and frolic: 5 hours in Urgent Care.

The thing that was really telling to me was looking back at the entries thereafter which talk about the papers I was working on, the number of hours of reading, managing a fledgling relationship, and going to karaoke. I had pins and needles or couldn’t feel most of the left side of my body when you touched it, but that was no excuse in my mind for not getting my papers done, not reading for class, or not going out with my friends.

When I didn’t know it was MS, I didn’t let it stop me from doing ANYTHING that I wanted to do or felt like I needed to do — and when I *did* find out what it was, over 2 months later, my wonderful boyfriend Adam reminded me of the most important thing ANYONE has ever told me regarding MS.
He held my face in his hands and said,

“You are the same person now that you were this morning. We just have a name for what’s going on with you now, and we can start treating it so you can feel better. This doesn’t change who you are or how much I love you.”

That moment made all the difference in my life. I started treatments for MS while continuing an externship in the business affairs department of a major record label. I continued through law school. I had this thing we liked to call “the nods” that started in October of that year. Nowadays, I know that I was having simple partial seizures. My face and hands would lock up, or I’d have an atonic seizure where I’d just kind of “plop” for lack of a better way to put it. My head would nod despite myself… hence they were “the nods” and were just part of MS fatigue in my mind… still not a reason to stop doing things, especially things as important as exams! So, my last 3 semesters in law school were each punctuated with taking exams while simultaneously having atonic seizures. And oddly enough, my grades were better because of how hard I studied with the brain fog I was having from the MS.

I’ve had so many people tell me how brave I am to keep on living the way I do — how inspiring it is to them to see someone with so many reasons to fail still “pressing on” and having a good life. I’ve always found this a little more than slightly amusing, mostly because it almost never feels like a choice to me. The funny thing is that I can objectively see what they’re talking about, but still can’t imagine having lived my life in any other way.

It wasn’t until I was in the hospital this past July that I was forced to acknowledge the extent of my current disability. Honestly, I hate that word — but it’s accurate! It forces me to face that I have limits, but it doesn’t tell me what those limits are.

I believe it was Eleanor Roosevelt who said that no one can make you feel inferior without your consent. The same is applicable to diseases. Just because I can’t drive doesn’t mean that I can’t go places. Just because there are days that I can’t walk doesn’t mean I can’t or shouldn’t exercise at all. Just because I have fatigue doesn’t mean that I’m lazy or worse, that I should ALWAYS give in to it.

I can say without hesitation that over the last 3 months I have needed to go easy on myself. I haven’t been exercising. I haven’t been going out much, and I haven’t studied or looked for a job… but I have also been having tons of seizures while they get the medicine levels figured out. During that time, I’ve gotten to read a lot of other journals, join several support groups, and to get back to myself.

I find that I’m happiest when I focus on life and MS is just a part of it. It’s when I let myself feel like a victim of MS that I am absolutely miserable. I’ve seen so many others fall into that way of thinking perpetually – like they’re never going to get better, or worse, they should change their lives to being shut-ins because they are ashamed or feel like a burden to others.

If there’s any message I can give to the world, it would be for everyone (especially those of us suffering with chronic disease) to know that a good attitude is the most important thing you can have. If you don’t have it in you to change your attitude on your own, then go get therapy. It can make all the difference in the world. It certainly has for me.

These past 18 months have seemed like years of growth all pushed into the tiniest time frame it could possibly squeezed into. MS has done me so much good that I often think of it as a blessing in disguise… because really, more than half of happiness is in your attitude, and that’s something you can choose to change any moment of any day.

You have it in you to make today great. Get to it. :)

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