Ok, maybe not karaoke…

Having a great time in Chicago except that almost none of the buildings here are handicapped friendly. Everywhere we go in the city has a ton of stairs! Fortunately, we’re spending the majority of our time in a suburb with Adam’s family.
I was asked a question the other day that got me to thinking, and I wonder how many people agree with me in this respect: You should always park in handicapped parking if you can in order to leave good parking spots for non-disabled people.

Others I know say that we should leave the handicapped spots open for people with handicaps who are worse off than you if you can possibly walk.

I figure, with a seizure disorder, I’m really just being considerate of whoever is being my driver. It’s a shorter distance to help me to the car.

Anyway, I’d love to know your thoughts on it. I hope you’re all doing well and are having a very happy Thanksgiving weekend!

Yet another reason to love being cripple!


Adam and me at the Bean in Chicago last year

At first, I was worried about flying with my disabilities – but then I realized how *great* airline travel is when you’re disabled.
You get driven around the airport. You get through security faster. Your helper dog flies free. You don’t have to run to your next gate because they get the cart thingie. You get to get on the plane without a huge crowd of people, and you’re usually first off the plane too. Too rad.
Tomorrow, Adam and I are headed to Chicago to visit family and friends. It will be the first time I’ve ever traveled with an animal. We got Brisco a cute sweater since it’s so much colder in Chicago than in the San Fernando valley.

Last year, we didn’t know I had a seizure disorder, so I didn’t have much fun at clubs or all-night video gaming parties. Who would have known it was photosensitivity? This year, I’m properly medicated, and I’m looking forward to having a great time.
Who’s ready for some Rock Band or Karaoke? THIS girl. :)

MStery Walking Theater 3000 — for the WIN!

So today I found out that my MS Walk team from last year placed in the top 400 of all teams! We’re now considered “shooting stars.” They even sent us a picture frame for a group picture and we’re getting special gear to wear at this year’s walk.

How rad is that?

Last year, we raised over $5000 for MS research, and this year, I know we’re going to do even better!

Want to be on my team?

Check out my profile and click on Join Rachael’s Team.

You don’t even have to live in LA to be on the team, and frankly, I don’t care whether or not you show up to walk. I just want as many people to participate in raising money to find a cure as is possible. Anything you can do to help is very appreciated!

Oh, baby, it’s ON!

I’ve been spending the majority of this week getting ready to go to Chicago to visit my boyfriend’s family and friends.

As many of you with MS know, that means stress & more movement – which also means fatigue. Sorry I haven’t been updating more. I’ll do my best to be more consistent.

Anyway – a friend of mine sent me a link to People’s Sexiest Men of the Year, and it just made me laugh. Most of the men, imho, aren’t all that sexy – but more than that, they’re all actors. I’m fairly certain there are hot men out there who aren’t actors. With a title like that, I expect them to do a little more research! 🙂

It got me to thinking about what makes someone “sexy” in the eyes of the world. I think one of the best qualities about having MS and/or seizure disorder is that NO ONE CAN SEE IT. If you don’t tell them, they don’t know.

So – how funny would it be to have a 20 Sexiest People with MS feature?

I’m officially throwing down that gauntlet.

Applications are now being taken to be considered for the first annual 20 Sexiest People with MS.

 

Please supply the following information.
Name: (Nicknames/Screennames are fine)
Age:
How long you’ve had MS & what type:
What you do: (Can be a job, hobby, etc.)
What makes you sexy:

 

Please include a picture no larger than 400×400 pixels, and send your submissions to fortheparking@gmail.com.

Super Hot Sexy Time

Today, I was participating in one of the MS support groups that I’m a member of. One of our members asked a question about sexual issues with MS.

For those of you who are not knowledgeable about the symptoms of MS,oftentimes those of us who have the illness have to deal with sexual dysfunction. For more info check out this site.

This member said that she could no longer climax and asked for suggestions. These were mine.

Ways to combat unsatisfying sex when you have MS:

1.) Pre-gaming. As part of the foreplay, or even BEFORE foreplay, use a Silver Bullet, some other vibe (The Hitachi Magic Wand Massager has gotten great reviews.), or running lukewarm/warm water on your clitoris to see your sensitivity level.

If you can’t feel the vibe, you aren’t going to have a clitoral or vaginal orgasm. If you can feel it, get yourself worked up some – because you need to have good bloodflow down there, and women’s increased sensitivity does not go away for a while.

2.)Heat it up. If you’re not *terribly* heat sensitive, put a heating pad on your crotch or take a short bath. The idea, again, is to increase bloodflow. I also wholeheartedly recommend taking a bath with your partner to increase intimacy, decrease stress, and set the mood. Light some candles, put on some music, and make the bath smell nice. You’d be surprised the difference that can make if you’re not heat sensitive. If you ARE heat sensitive, obviously, don’t do this. There’s nothing less sexy than causing yourself to have a pseudoexacerbation.

3.) Cool it down! Sometimes cold can make people more sensitive. Just think about when you get goosebumps and your skin is more sensitive to the wind. According to some sources, women can sometimes benefit from a cold-press being applied to their perineum.

4.)There’s a medicine for damn near everything now. For some people, Viagra helps increase bloodflow to that region, even for women. There are also other non-prescription pills creams that claim to do this too, such as Fematril or Provestra, gels like Liquid V Female Stimulating Gel, and even items like the Liberator Wedge/Ramp Combo that will take some of the physical strain out of trying different positions. As someone who is creative, but has a lot of fatigue, I could easily see this being helpful for others.

5.) Don’t forget the rest of your body! People forget that you can orgasm even without genitals. Extragenital orgasm happens entirely without genital contact. The person is simply able to excite herself with erotic thoughts and fantasies to the point of orgasm, sometimes triggered by physical stimulation, e.g., touching the neck, breasts, or thighs (This would work better if you can feel your neck or thighs but have numbness in your genitals). This type of orgasm can also happen when a woman is doing a particular form of exercise, like sit-ups.

In that same vein of thought, many people forget the importance of having well-toned PC muscles. As a woman, even with some numbness, you can do Kegel exercises that will increase bloodflow, improve sensitivity, and force you to think about how your body feels and how your mind feels.

6.) Get in the mood! Sometimes with fatigue and different aches and pains, it can be just HARD to feel sexy. Dress up in something that makes you feel sexy. Don’t forget that the mind is the most sexual organ.

I know when I was feeling that I was “broken,” that I was focused on the idea of “Can I come? Will I be able to come? If I don’t, is my partner going to feel like a bad lover? I HAVE to be like I used to be RIGHT NOW, come on body!!!” and that is the death of pleasure. My boyfriend said, “Shh. That’s my job to worry about.” and when I was able to relax, I was able to truly enjoy sex again.

7.) Listen to and respect your body.Take time to massage one another, go slow and be emotionally intimate – that can make a huge difference, not only in your sexual experiences but also in your relationship. Don’t begin intercourse until you are 100% lubricated (naturally is preferable, of course) and ready. Good lovers want you to truly enjoy it too.

If your problem has more to do with vaginal dryness due to MS, there are tons of lubes out there that can help you out.

My recommendations:

Liquid Silk Lubricant which is water-soluble, moisturizing, and doesn’t leave you sticky at all & Wet Platinum Premium Body Glide which is silicone based, never dries, leaves you moisturized, and does not break down condoms.

I’m also a fan of this one, but it can be sticky sometimes: KamaSutra Love Liquid, still I can’t think of any KamaSutra brand product that hasn’t been fun and safe. Their Oil of Love Collection is all kinds of fun and lets you try 5 of the flavors they offer – plus, any time you can add fun to sex, you’re more likely to achieve climax.

8.) Variety is the spice of life! It could be that you’re attributing your bad sex to MS when it’s got very little to do with it! Maybe you just need to spice up your sex life by changing up your routine. Maybe you need oral sex to get really excited. Who knows. It’s your body. Just experiment some, and be patient with yourself and your partner. Sex is not a race to orgasm, despite what TV or movies might have us believe. If it were, I don’t think tantric sex would ever have gained popularity. (Don’t worry – the link’s to Discovery Health – not a porn site!)

This site has some good info on massage and achieving orgasm (but is NSFW):

Massage Techniques for Lovers

These sites are much more scientific and totally work-friendly:

Exploring the Mind-Body Orgasm

Sex and Intimacy in People Living with MS

Lastly, here are some book recommendations if you want to read more:

The Ultimate Guide to Sex and Disability: For All of Us Who Live with Disabilities, Chronic Pain, and Illness

Enabling Romance: A Guide to Love, Sex and Relationships for People with Disabilities (and the People who Care About Them)

Sexual Function in People with Disability and Chronic Illness: A Health Professional’s Guide

Hope this helps any of you who are having these kinds of issues.

Please, let me know if you know other ways to combat MS related sexual dysfunction! Leave me a comment!

Disabled Does Not Mean Depressed

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.

Ain’t that a kick in the head?


MS: Food ingredient may be cause of autoimmune disease
There’s an ingredient in our food that scientists are beginning to suspect could be a cause of auto-immune disorders such as multiple sclerosis and Grave’s disease.

Excitotoxins – amino acids that, quite literally, excite the nervous system, and cause neurological damage – may be a bigger culprit than anyone has suspected, and often they’re a hidden ingredient in the food we eat.

The two most common excitotoxins are the artificial sweeteners monosodium glutamate (MSG) and aspartame, but they are also hidden behind ingredients such as hydrolyzed proteins, hydrolyzed oat flour, sodium caseinate, calcium caseinate and yeast extract. Soybean extract are also rich in glutamate.

Researchers such as neurosurgeon Russell Blaylock and others have suspected for a long time that excitotoxins can cause auto-immune disease, and their concerns have recently been supported by a study from the Albert Einstein College of Medicine in New York.

(Source: Townsend Letter, 2008; 304: 28-29). Links added. Online here.

———————————
This is the first time that I’ve actually been immediately convinced of the likely truth of a statement regarding what might cause MS.

See, from the time I was old enough to drink from a sippy cup, I’m pretty sure I’ve drunk more sugar-free Kool-Aid, diet sodas, and iced tea sweetened with Equal than, well, anything else besides water.

I’ve eaten “diet” foods that were rich in artificial flavors which still didn’t always make the diet-food-of-the-day taste good, since I was 8, and those foods have so many of those excitotoxins. If consuming these low-calorie, low-fat foods and drinks to have a healthier life leads to multiple sclerosis, I promise the irony is NOT be lost on me.

As for me today, I once again went up on Lamictal and down on Keppra, so I’m the next best thing to the waking dead this morning. Fortunately, I’m of the belief that even zombies can type on the internet. 😉 Hey, we gotta get our brains somewhere. 🙂

Hope


America’s new First Lady, Michelle Obama

Yesterday was inspiring to me. When our country elected Barack Obama, I was so thrilled to be a part of such an historic event.
Now, I know it’s probably silly of me, but a big part of why I’m glad that he got elected is his wife, Michelle.

As first lady, she can aid in the cause of finding a cure for MS, or, at the least help to make disability laws more fair to RRMS sufferers all over the country who are frequently denied benefits or aid because relapses come and go.

“[L]ike her husband, she is running on biography, suggesting that her most important qualifications are her life experiences.Daughter of a Chicago city pump operator who had multiple sclerosis, she graduated from Princeton and Harvard and juggles her job as a hospital executive with motherhood and civic work. ”
See the New York Times article here.

It’s good to know that someone in the White House knows first hand what multiple sclerosis does to families and to those of us who are living with it. Since she previously worked as a hospital executive too, that gives me an awful lot of the hope that Obama’s campaign was so famous for.

Mortified.

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. 🙂