In It For The Parking

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.

After over 6 months of dealing with seizure disorder, MS, and all the complications that have come with it (the emotional struggles and juggled responsibilities), Adam and I were both exhausted. Even the most loving couples have their limits - and we'd hit ours.

So, being the spontaneous kind of girl that I am, I hit Hotwire and wanted to see if their 4 star hotel at a 2 star price ad campaign was real. It *so* was. We went to the San Diego Hilton Resort for one night for less than $100, and we reconnected. We went to the beach, to Balboa Park, and all along the bay. I got to walk around and feel like my old self, and I didn't have any seizures the whole time! (yay!) We remembered why we got together in the first place, and left feeling relaxed, refreshed, and with romance rekindled. (Come on, how often do you get to use alliteration? Besides, "R" is my letter. ;) )

I know we can't possibly be the only couple that is challenged by the stress, frustration, and sadness of chronic disease. I think we've got a good system though for making things better, and I think they'd be applicable to anyone in our situation. ( Read more... )

I love my boyfriend to the ends of the earth and then some. I love how much I'm learning about myself, about life, and about love through my relationship with him. I feel so lucky. :)

It has been *such* a hard several days.

At first, I was going to write a post here about suicidal ideation and compulsion in people with chronic disease.

Then, I was going to write about coping with a lack of mobility.

Then, I was going to write about dealing with both of them in a relationship...

But to be honest with you all, I don't feel like I'm in any position to write about what to do in any of those situations because I'm dealing with all of them right now and haven't come out the other side yet.

I have to say, I'm worried about myself. ( Read more... )

I wish I could tell you all that I'm through the worst. I certainly hope that I am. I'm just having a horrible time getting the motivation to do anything but sit online and read and write. I don't feel music inside me. I just don't see the point in anything I do right now. I've now sent out over 50 resumes in the last month, and I had ONE call back... and after a great interview, I still haven't gotten a second interview.

I think about how many people wish and pray to God for time to do the things they want in their life. ALL that I have is time right now, and I'm just wasting it, aside from this blog. Hell, I don't even know if this blog is gonna help anyone besides me. I guess if it even does that, it's worth something.

This cognitive dissonance is really bugging me. I hope it ends soon, and not with me having done something painfully stupid. I'm better than that.

Believe it or not, there are other MS blogs out there! (Ha, like you don't know that.) I was over at MultipleSclerosisCentral.com and came across a great post by Merely Me discussing what some people have called an "MS Personality."

"The Diagnostic and Statistical Manual (DSM), which is used by mental health professionals, describes the effects of MS in its discussion of chronic and organic brain syndrome and organic personality syndrome: abnormal mood shifts, anxiety, affective instability, outbursts, aggression, rage, suspiciousness, and paranoia."

The evidence seems mounting that it is possible for Multiple Sclerosis to alter one's personality. In looking for research, I found one study which was cited multiple times with reference to this topic. Benedict, Priore, Miller, Munschauer, and Jacobs (The Journal of Neuropsychiatry and Clinical Neurosciences 2001; 13:70-76) attempted to discover if there is any correlation between MS and Personality Disorder. And indeed, they found such a correlation.

So does MS itself cause Personality Disorders, does it bring out latent ones, or is this "personality" caused by the meds we all take? There are so many factors of MS that cause or exacerbate latent problems/mood disorders that I wonder if anyone could accurately find a consistent, expected shift in personality among those of us with MS - and if so, if that should be included as part of the diagnosis of the disease.

Just think about all the factors that affect people with this disease:

1.) New medications
If you start w/ interferons, you deal with flu-like symptoms and depression/anxiety for side effects. If you take Copaxone, you have initial site reactions and it can exacerbate anxiety or depression if you already have it. If you just smoke weed, it doesn't slow the disease, and it's a depressant that, when abused, can cause a turn towards sadness or grouchiness. So, right from the get-go, the meds themselves cause emotional turmoil, at least at first.

2.) Meds to mediate your meds.
Feeling depressed, anxious, or obsessive because of this? Time to start taking an anti-depressant. So right there - you're considered "clinically depressed"

3.) Having MS sucks.
Whether you're having cognitive problems, bladder problems, fatigue, or all of the above and more, just living life knowing you have MS, dealing with the changes in your life because of MS will make you upset, no matter how wonderful and optimistic a person you are.

4.) Cranky babies need a nap.
MS causes fatigue for almost all of us. If we don't give ourselves naps or enough uppers (ProVigil, caffiene, whatever), we're gonna end up tired - and like anyone else, we get cranky, irritable, overly emotional...

5.) I'm just not ME anymore.
Changing our ideas of what we can and cannot do causes us to have to redefine the roles we want to play in our lives. Being forced to admit that you need help is humbling. It will certainly cause a change in peronality if you were always the one taking care of everyone else. And then you have the fact that once you redefine how you want to live your life, you have to deal with all of your family and friends accepting the "new" you... another situation that can cause more stress and make you irritable or emotionally out-of-whack.

6.) Nobody likes a bitter person...
But some of us are just predisposed to feel sorry for ourselves. It takes all kinds -- and it certainly takes a significant amount of effort to find the humor and the bright sides of dealing with this crazy disease. Sometimes all it takes is knowing that I can't get myself somewhere without having a friend give me a ride or finding a taxi for me to become a crabby, bitter person for at least an evening.

7.) The disease itself

• MS causes fatigue, which stops you from doing the things you love sometimes. That can become depressing.


• Knowing that an exacerbation can hit at any time and that you have no idea what you can and cannot do on a given day can make you absolutely crazy - especially if you used to be a control freak with your schedule. That can make you a worrywart.


• Knowing that illness can cause your immune system to flare up and then cause your MS to get worse can make you a bit of a hypochondriac.


• Lesions in the parts of your brain that have to do with emotion can easily mess with you too.

8.) Sacrifices
Having to give up certain things that you really like (hot tubs/saunas, going to the beach, hiking, etc.) can make you angry. Having to give up vacations, fun with friends, etc. because of the financial obligations or physical problems that occur with this disease would make anyone frustrated and angry.

I wouldn't be at all surprised if there were a significant number of us out there who are stressed, physically in pain, emotionally humbled, anxious, angry, depressed, etc.

Life's all about coping - dealing with what's in front of you the best way that you can... but not everyone knows how to cope, and not everyone copes in the same way.

I wouldn't call it an "MS Personality" - but rather a psychiatric component to the disease. But hey, that's just my take.

Yes, that's right, boys and girls - this is, in fact, a post both about boobs and small animals. No, this is not a cheap ploy to get readers.

Ok. It's a cheap ploy to get readers... but it's also true!!!

First thing's first: BOOOOOBS!!!!

Alright, you granola mommas out there - if you needed one more reason to pimp the benefits of breastfeeding, here it is. Exclusively breastfeeding your babies for at least 2 months after pregnancy lowers the risk of MS relapse/exacerbation after pregnancy by more than 50%. (Story here)


Random internet propaganda booby baby says,
"Join the fight against MS! I'm doing my part!" :)

Today, I'm doing really great. Day 2 of no steroids, and some of Adam's good friends are in town from Chicago. We went out for dim sum, and I even had enough energy to go walking around Chinatown. I can't say I'm that surprised, though - last night I walked for a half hour around the neighborhood. I'm really feeling great! And I feel even better about feeling great. :)

And now, cute animals! (And your picture of the day!)



That's Brody (upside down) and Piglet, two of our first fosters, adopted out in January. I love renting cute and then giving it to other people to enjoy. I wish we had some babies right now! Soon, though - it *is* kitten season in March, afterall. If anyone's interested in learning more about kitten fostering, please let me know!

Happy Caturday, everyone!