Monthly Archives: March 2010

Whee!!!!

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Hi there.

I don’t want you to think for a moment I’ve forgotten you, my darling readers. I haven’t.

In the last whirlwind of a month, I’ve seen every doctor I have, and I’ve spent most of my days between the couch and the bed, taking 2 naps a day, at least 200mg of Gabapentin every 4 hrs or so on top of your regular meds for the pain, wedding planning like a, well, bride, and spending far too much time on Facebook trying desperately to keep in the faintest of contact with everyone I care about, which, I might add, is far too many people for one person to try to genuinely and deeply care about, though not nearly as many as I will ultimately have come time to finally rest.

I got a really interesting email a few moments ago about a woman who is a mountain climber who also has MS. More details about that may or may not be coming. The funny thing is, her mission is exactly the kind of thing that I would make fun of out of snarkiness, but that is absolutely 100% admirable if it is truly her ambition. I cannot wait to hear more from her.

Tomorrow, I leave on a last-minute “oh-my-gosh-I-can’t-believe-Priceline-worked-like-that!!!” trip to Chicago to pick out a venue for the wedding with my dearest beloved – and to celebrate the heck out of my future mother-in-law’s 60th birthday. So, I really suppose I ought to pack.

Better something than nothing, I suppose

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I have not posted, and honestly, it’s because I can’t get my thoughts straight. I’m doing too many things.

My thoughts are everywhere. The wedding. Healthcare reform. Crazy pain. Can’t get hungry. Almost always want to sleep. Netflix has become like net radio used to be, and really, that’s kind of cool.

I’m thinking of getting rid of our Dish and hooking a computer up to our TV. Why pay for Dish Network when I can pick something I know I’d rather watch on Netflix or Surf the Channel or Hulu or YouTube? It’d save us something like $70/month, so it seems like nothing but win from here, though I will miss rewinding live TV. It also means that wherever we live, we’re going to have to make sure we’ve got CAT5 and a wireless keyboard setup for the TV.

And really, that has nothing to do with anything that I intended to post on this blog. There’s so much fantastic info that I want to put here that I’ve aggregated but that hasn’t gelled into good posts.

Still, I’d rather tell you what I’ve really been thinking about.

How difficult it can be for people to see compassion in others when there is a difference of opinion in the way (or when) that the compassion ought to be shown.

Suicidal Thoughts: What to Do. Because you never know when it might be important.

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http://www.save.org/index.cfm?fuseaction=home.viewPage&page_id=705F9F6A-F141-B5EB-C8A6B86CA0B2001E

Suicidal Thoughts: What to Do
If you have thoughts of suicide, these options are available to you:

* Dial: 911
* Dial: 1-800-273-TALK
* Check yourself into the emergency room.
* Tell someone who can help you find help immediately.
* Stay away from things that might hurt you.
* Most people can be treated with a combination of antidepressant medication and psychotherapy.

If You Don’t Have Insurance

The following options might be used:

* Go to the nearest hospital emergency room.
* Look in your local Yellow Pages under Mental Health and/or Suicide Prevention; then call the mental health organizations/crisis phone lines that are listed. There may be clinics or counseling centers in your area operating on a sliding or no-fee scale.
* Some pharmaceutical companies have “Free Medication Programs” for those who qualify. Visit the National Alliance for the Mentally Ill website at http://www.nami.org for more information.

—–

That’s great and all, but I have one surefire win for suicide prevention that works every time.

Do nothing.

That’s right, nothing.

Suicide takes work. Effort. Doing something, or not doing something when something must be done in order to avoid death.

So, if you’re feeling the urge to end your life, my best suggestion to you, in all honesty, is do nothing. Put the pause button on life, as it were, not the stop.

Go to bed if you can. When you wake up, odds are, you’ll either be thinking about something else, feel better enough to go talk to someone, or at least have made it another few hours without dying. After all – that’s the point, right? Not dying, I mean.

Don’t feel sleepy? Feel good and angry? Smoke some weed — THEN go to bed. That’s right. I said it. Better that someone get a different perspective on their issues than kill themselves out of rage for the problems they cannot fix all by themselves.

So… what do you do when you’ve smoked some weed, gone to bed, woken up and still want to die? You talk to a friend. And then you do it all again. With or without weed. And with or without going to therapy and all those other things you see above…

You do whatever you need to do to get by without doing something asinine despite yourself, because you know at the end of the day, what matters most is that you stay alive, because dying means saying goodbye to everyone you love and the parts of life that make you laugh even when you’re hurting.

When you’re at that dark place, what you need to hear… what you need to know – I mean, really know, is that someone, anyone cares about you. And really, you in particular.

Find friends or family to be around when you’re able. A support network is crucial to identify and develop. They can often hold the key to your wellbeing in times of crisis like this. I don’t know where I’d be without mine. 🙂

I think I’m finally getting back to myself, at least, a little.

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Crazy as it might sound, I think I’m finally, just now, finally getting back to myself… recovering from the stress of the bar exam… from the 100% stopping of life but for the eat-sleep-study-worry-blog/waste-time-on-Facebook cycle.

I actually showered today instead of taking a bath!

I know that might not sound like much, but standing, for more than 10 minutes, in cool water versus laying in warm water is a big difference. It requires a lot more energy. And I had it in me today. 🙂

Not only that, but yesterday I wrote a horribly bad song and ran to the other room to record it before I realized how bad it was and decided not to record it. BUT I DID NOT RIP UP THE LYRICS! So, there’s that. Progress. I’m beginning to get out of my own way there at least. I can show the song-o-the-day for March 12. 🙂 I have yet to write one for March 13, but I’m confident I will write… something by the end of the day.

I know that my most pressing commitment at the moment that I’ve been neglecting has been the MS Walk. I haven’t done anything to really ask for donations or to bother people to join my team. Right now, I’m the team leader of a team of three. Now don’t get me wrong, we are an awesome team of three, but I really envisioned Cripplocalype 2010 being a great HOARDE of people. So I’m asking because I really want people to walk with me and have fun together, please, whether you can afford to contribute even 1 CENT of your own money – PLEASE, JOIN CRIPPLOCALYPSE 2010 AND HELP US BRING AN END TO MS!. I promise, there may be other teams, but none will make fun of themselves as hard as we will, and none will rock so hard. m/

Speaking of things that rock SO hard – few things are as fucking metal as weight-lifting. Starting this week, I’m getting back into using free weights after months and months of what can only be described as muscle atrophy. No matter how much it sucks, I’m going to try to use the same gumption I used every day to study in order to make myself exercise – because I know it’s something that I genuinely DO want to do, whether I feel like I want to do it or not. I mean, hey… it’s worked out so far, right?

This week is looking like it’s going to be good. I’ve got lunches set up with friends. I’m trying to do things. I’m trying to always be better and do more – whether or not it messes with SSDI. I want to be better. Better is always the objective. Better is the best possible thing. And I’ve been feeling pretty good. I just wish it were good enough to be really looking forward to the board game night tonight. It’s only 6 pm right now and I’m so ready to go to bed.

Oh well! I could sleep all day anyway. Do I take another 5 hr energy or do I go for a Red Bull? Believe it or not, one is actually more healthy than the other here. *lol* Last 5 hr energy I had was at 10 am.

You know, excitement feels a lot like anxiety when you’re trying to sleep.

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I had a freakin great day yesterday.

I mean AMAZING.

I hung out with Jenny almost all day. I had minimal difficulty getting around Target and Marshall’s with her. She got a Fur-Real friend for Bryce that made me laugh out loud. Then I was by her side while she took care of some business, and I actually was able to write out a reasonable “How to be Alive” routine that I think might help pretty much anyone.

The only down spot was that I had to have Adam bring me home when I thought I was gonna be able to watch his softball game because my body wasn’t handling the cold – but even THAT turned out well because I was able to take part of that time and speak with Poppy without Adam around, who was kind enough to offer to help pay for the wedding.

So really, HONESTLY, yesterday couldn’t possibly have been better.

So why have I been awake for 2 hours in the middle of the night with anxiety? I seriously cannot sleep.

First, I couldn’t stop looking at locations for possible ceremonies. Then, I couldn’t stop thinking about who we needed to invite. Then, I was stuck in a “I’m never caught up on Facebook” loop of trying fruitlessly to catch up on that service.

Oh snap.

I AM THAT EXCITED ABOUT THE WEDDING!!!!!!

This is a GOOD anxiety! *lol*

I am so used to being worried that I didn’t realize that I ran in here in the middle of the night like a girl who can’t wait for it to be the next morning so she could start planning more. 🙂

I’d feel like a total dork about this, if not for the fact that realizing that I was/am just excited totally calmed me down and made me laugh at myself. And yawn, big time.

Sometimes my perspective is just warped. I think when I’ve woken up at 3:30 am from a foot that won’t stop twitching and my big flip out is “I can’t calm down!!! zomgWHY!?” and the answer is, “You’re too happy/excited.” It’s an okay problem to have. 😀

I think I can handle this one. 🙂

guh.

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I am hurting all. over. my body.

I keep falling back asleep. I keep having atonic seizures. My wrists hurt with fuzzy pain like I can’t explain, and the gabapentin helps, but it knocks me on my butt, right back to bed.

I think I might have been awake 4 hours today.

I can’t think clearly. Like I have these moments where I’m a-ok and then these moments where I can’t think at all.

I finally had a desire to eat, at least.

I’m so worried about my future. I have no idea what I can do or what I ought to be able to do. Some days I’m a normal person. Some days, like today, I can barely move. It literally hurts to type.

Part of me just wants to die because it’s too hard to figure this out and I’m too tired and it would be easier to just disappear. This is, of course, lazy, and not a real desire but an escapist fantasy because I cannot handle what is happening to me.

I think it would be easier if my body could decide from day to day if I were able or disabled. But with MS and with Epilepsy, it’s a moment to moment thing. I never know if I’m ok to do anything. Sometimes, I feel fine. It’s great. But it never lasts more than a few hours. And I never know when it’s gonna happen.

I had such a wonderful time with Joyce and her band earlier this week and I’m sitting here being a whinypants because I can’t go anywhere to do fun things because I feel bad.

Right now, I could be at an Oscar party with friends. People I want to see.

But I can’t. Because I felt too bad to go out.

I’m tired of this shit.

I have to really get a handle on how to live my life well with this combination of disorders. I don’t want to live my life like Lazy Smurf. I don’t like sleeping through almost every day, and hurting like hell or being seriously drugged up/stoned when I am awake.

I know part of this has to be that I’m waiting for my bar results and am in the middle of the SSDI thing. I feel like I’m in some kind of weird whirlpool of “who the hell am I?” right now and I don’t even know where I belong.

Sometimes I don’t even know what the day is or how old I am. Sometimes when I come out of my seizures I don’t even know where I am.

Just existing is so hard sometimes. I don’t know how I’d do it without Adam.

Talk about resistance.

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All that it takes for me to get rid of the majority of my student loan debt, is to print out this form and get the my doctors (who are being contacted about SSDI stuff anyway) to help me here. It will be no shock to them to have this form there. It will require no additional information than that which they will already have gathered for Social Security.

But it freaking makes me feel awful to read the line “Diagnosis/explanation of the borrower’s present medical condition (identify the borrower’s condition and explain how it prevents the borrower from working and earning money in any capacity).”

…in any capacity.

*sigh* any.

There is a part of me that rages angrily against that. It’s the same part that writes this blog, I think. And the same part that pushed me to take the bar exam. Twice. The same part that believes there will be a cure sometime soon for MS.

But it doesn’t stop the pain in my wrists or my ankles or knees. It doesn’t un-numb the left side of my chest. It doesn’t keep me from falling over from seizures or from a sudden lack of feeling in my feet.

And somehow, my sense of self-worth is so tied up in the ability to make money that even though I know the Social Security office will be contacting all my doctors for the purposes of determining a claim for SSDI, I am hesitant to ask them to help me with this.

Making money… making businesses… It’s been such a part of my life before.

And now, this is something I never comprehended. Now, because there’s no way that I can work at the moment, I’m asking my doctors to tell the government that I won’t ever be able to do it again.

*I* have to be the one to ask them.

I don’t want to admit the loss of that part of myself. It feels like a punishment already having to endure it.

But what’s one more humbling event, right? At least this one acts to cancel debts I cannot pay. At least I know I’m helping my family.

In it fo’ tha pennies too.

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Well, it’s official. As of March 1st, 2010, I have swallowed my pride and admitted that I need the system’s help.

That’s right, boys and girls. I applied for Social Security Disability Insurance (SSDI) today.

Now, I know what you’re thinking: I haven’t worked long enough. Well, I’m under 30, so there are some different rules. There’s a chance I could get it.

I also need to apply for SSI and food stamps. But I can’t do that today because it’s too late in the day already. I’ll have to jump on that gravy train to survivable poverty tomorrow.

But don’t let that make you think I’m being pessimistic. I know that Vimprat’s out on the market now and that there’s a snowball’s chance in hell that it could work on controlling my seizures. So who knows. I mean, I did apply for a job that reads like my dream-job today…

…the job I hope I’ll have