I’m still here, I swear!

It’s been WAY too long between blog updates — the reason for that? Scheduling.
Picking up Foster Kitties: Dec. 20th
My birthday & first day of Chanukkah: Dec 21st
Birthday recovery: Dec. 22nd
Dad and my brother visiting: Dec 23-24th
Christmas (obviously): Dec. 25th
Kitten Adoption Fair: Dec. 27th
I’m so happy – all of the kittens we’ve fostered were adopted today! For one week with REALLY scared kittens, that was a huge big deal for us.
Monday, we take them to the vet to get neutered and they go home with their new families. I’ll miss the sweeties, but not too much. I’m sure we’ll have more babies sometime soon, and if not, I am very happy with my dog and my boyfriend. I like being a kitten babysitter, though. :)
Stuff with the MS and Seizure Disorder has been BLISSFULLY minimal. On Jan 1st, I am coming off of Keppra for good. (Thank goodness!) I hope that will signal the end of my seizure disorder messing with me.
Of course, what good would a wonderful week be if it didn’t have awful surprises too. On Monday, we had 2 working cars. As of today, we have 0. Adam’s radiator or a hose leading to it has busted. My Prius’s battery is toast, so we can’t even get it into neutral to roll it around back. (Fun.) On the bright side, I can’t drive anyway, so if we get at least 1 working, we’re good to go.
So – how were (are) your holidays?

Freakin Sweet! New MS Drugs are almost done with trials!

Yet another reason to love living in Los Angeles – today’s article in the Los Angeles Times.
Brendan Borrell reported on several new drugs that are entering their final trial stages.
This pill-form disease modifying agent deprives T cells of the signal they need to leave lymph nodes, effectively stranding them outside the brain. It was originally created to help people’s bodies accept organ transplants, since it’s an immunomodulator.

At the American Academy of Neurology meeting this year, researchers reported that 173 patients with a relapsing form of MS showed a decline in the relapse rate over 36 months from 0.31 relapses per year to 0.20, a 30% decrease in their relapse rate when they took fingolimod.

Wow, math. That means that most of those patients have 1 relapse every 3 years (lucky ducks!), and that of the patients in the trial, they had 1 relapse every 5 years – which is comparable to the claims made by Copaxone. Since I take Copaxone and give myself an injection every night w/ a painful injection site, if this drug has minimal side effects, this might be great for me.
So what are the side effects? According to WebMD, 70% of MS patients are relapse-free (!!!) After 3 Years on Fingolimod.
The most common side effects have been head colds, headache, and fatigue. But there have also been a few cases of skin cancer, which has also been reported in patients taking Tysabri.
Hrm, skin cancer? That’s a bit worse than flu-like symptoms, I’d say… but no more relapses at all? Is it worth rolling the dice? That’s questionable to me.

In just six months, the number of patients with brain lesions decreased from an average of 2.2 per patient when taking the placebo down to 1.29. In addition, after 36 months, brain scans revealed that 89% of patients had no evidence of inflammation.

Correct me if I’m wrong, but it totally sounds like after 3 years, it is even better than Copaxone for fighting the disease, since Copaxone reduces the number of new lesions by up to 40%. Anyone have a figure on this? I don’t want to misrepresent.
In my research, I found another blogger out there who’s actually on this drug. To find out more, check out Fingolimod and Me You can be sure I’ll be reading up on it.
Alemtuzumab (Campath)
This artificially produced, pure form antibody was designed and approved for fighting leukemia – specifically lymphositic leukemia. If I remember right, my Grandma was actually a part of the initial clinical trial for that drug. How cool would it be if this drug ends up being awesome for MS too?
According to the New England Journal of Medicine, Campath, which is administered by IV infusion, can reduce the relapse rate in early-stage MS patients by two-thirds relative to the standard MS drug Avonex. With all I’ve heard about the flu-like symptoms that accompany that once-a-week intramuscular injection, I wouldn’t want to be on it anyway, so if this drug works better than Avonex by two thirds, why would anyone want to take Avonex?
Well, that’d be because Campath is an infusion rather than a self-administered shot (which means you have to go to the hospital), and unlike flu-like symptoms, one of the potential side effects of Campath is death, just like with Tysabri, blood disorders, allergic reactions, and infections.
Thumbs down for me.
Designed for treating rheumatoid arthritis and Non-Hodgkins lymphoma, this drug (which is administered by infusion) is directed at the immune system’s B cells, rather than T cells, which is a departure from the usual route taken by current disease modifying agents. The common name for this drug is Rituxan.
The most important serious adverse reactions to this drug are fatal infusion reactions, tumor lysis syndrome (TLS), severe mucocutaneous reactions, progressive multifocal leukoencephalopathy (PML), hepatitis B reactivation with fulminant hepatitis, other viral infections, cardiovascular events, renal toxicity, and bowel obstruction and perforation. The most common adverse reactions of Rituxan (incidence ≥25%) observed in patients with NHL are infusion reactions, fever, chills, infection, asthenia, and lymphopenia. The most common adverse reactions of Rituxan observed in patients with RA are hypertension, nausea, upper respiratory tract infection, arthralgia, pruritus, and pyrexia.
Yeah, not for me either, but maybe for others! At the very least, it’s a step in the right direction for researching what affects our disease.

If you’re on any of these, are part of clinical trials, or are good friends or family with someone who is, I’d love to hear more from you!

So very, very tired… but it was SO worth it.

Officially, I used all my spoons yesterday AND all of today’s spoons yesterday. I feel like I got run over by a tractor in my sleep.
Fortunately, it was *so* worth it. I got to clean up my whole house (dishes and all!), meet with the Burbank Animal Shelter Volunteers to set up my becoming a foster momma for kittens, have a lot of fun shopping for a present for Gideon, and then spend about 6 hours with some of the best friends I could ask for.
Admittedly, there were several people who were missed, but there were competing parties, and I am actually glad for the low turn out. Going from seeing 1-2 people a day, moving to being in a room with 15-20 people is a shock to the system. Unfortunately, people began taking photos, and immediately, as if given a direct order, my body began convulsing. Back to square one on the “Days without Seizure” safety sign. ;)
That being said, I want to let you know that I haven’t forgotten the purpose of this blog. It’s not just my personal account of life with chronic disease, but is also out here to help inspire others to live their lives with chronic illness well.
That being said, today’s lesson is this: Don’t forget to have fun!!!
Granted, it’s hard to get into the mood to have a good time; it’s hard to convince yourself to push yourself to take more medication or to rest up earlier in the day instead; it’s hard to confront the fears of what could happen in a social situation, and it may take a lot out of you the next day, but it’s too easy to feel sad and sorry for yourself if you don’t surround yourself with people you enjoy and let loose every once in a while. There’s enough medicine out there to keep you awake and mostly pain-free for at least an evening of boisterous conversation every now and then.
Unfortunately, no picture from last night… so instead, I give you something silly!

If only we'd had these last night!!!

If only we'd had these last night!!!

It is GOOD to be me today!

5 days in a row of NO SEIZURES!!!!

I’d forgotten how unobtrusive my multiple sclerosis is compared to the seizure disorder. Granted the MS caused the seizure disorder, but comparatively, I feel GREAT!

This morning, I’ve been able to do chores! (I know it sounds nuts, but when you’re mostly couch ridden, being effective is fantastic!) I did laundry, dishes, cleaned the living room AND the bedroom, and it’s only 11:30! Next thing you know, this place won’t look like an undergraduate dorm room! 🙂

Tonight is a double birthday party/holiday party for me and my friend Gideon! Hey, it’s what happens when your birthdays are within 5 days of each other and within 5 days of Chanukkah and Christmas.

Last year, before my diagnosis, Gideon and his lovely wife, Deb, made me a helmet with purple tassels and a light on top. I wore it at the MS walk last year, and it’s totally awesome.

Yay for helmet

Yay for my Birthday Helmet!!!

No idea what silliness tonight will bring, but with any luck, there will be pictures!
Happy Saturday everyone! 🙂

Stuff and Things

Hey there, party people!

I know it’s been a few days since I’ve updated. Wanna know why? BECAUSE I’VE BEEN FEELING SO MUCH BETTER!!!

Dr. Sutherling (one of my amazing neurologists) is slowly taking me off Keppra (an anti-seizure medication) while increasing Lamictal (another anti-seizure mediation). Well, as of Dec. 3rd, I’m only taking 250mg of Keppra and that’s at night before I go to sleep – and guess what? During the day, I am feeling *great* – almost to the point of saying I feel like I did prior to diagnosis. It’s truly amazing to me.

So what does that mean? It means I FINALLY am getting to properly clean the house and get my life back in order! I can’t TELL you how wonderful it is just to be able to cook again in the kitchen.

Anyway, we’re decking the halls over here, which is *really* fun for me, being raised Jewish and all. What can I say? I like tiny shiny colored lights. Who doesn’t?

Is It Just Me?

So, I got this great email from Patients Like Me letting me know that someone in the scientific community wants to do a clinical trial of an oral MS drug.

Part of me jumped. “YAY, NO MORE INJECTIONS!!!” was my thought. But then I realized that whomever is on the treatment won’t know whether they have the real drug or a placebo… and the possibility of being on a placebo makes it just *not* worth it in my opinion.

My grandma had leukemia, and she was supposed to have 6 months to live. She lived another 12 years, due in no small part to her willingness to try experimental drugs. A large part of me thinks that being a part of a clinical trial would be great and a way to really help the MS community. The rest of me says, “Hey, still tapering down on Keppra and you’re damn near always the teeny percentage that has a negative reaction when it can happen.”

I think I’m gonna sit this round out. Do any of you think that clinical trials are the way to go? Do any of you out there have experience with them?

Happy Birthday, Broski!!!

Today’s my “little” brother’s birthday. He’s turning 25.

Gah, that means in 2 weeks from today, I’ll be turning 28. 28 is SQUARELY in the “adult” phase… 2 years away from being a “thirtysomething.” Funny thing is, I still feel like I’m in my early twenties. Maybe it’s because in my early twenties, I started living in “the real world” after college, and now I’m just out of law school. *shrug* But this post is not about me.

My brother is totally awesome, and I want the world to know it. The silver lining on having to be under constant adult supervision for 6 weeks after being diagnosed with seizure disorder was that he came down for a couple of weeks and took really good care of me. He helped me find ways to make the seizures more tolerable, and helped me come to terms with the bevy of “what ifs” that come with MS and Seizure Disorder. It was really a turning point in my life.
If I had a wish for any of you out there with chronic illness, it would be to have a family relationship like I do. I couldn’t do it without them.

I love you so much, Boychick. I can’t imagine my life without you.


A Taste Of My Own Medicine

It’s funny how often in relationships a person can just plain forget that their emotional baggage isn’t the only burden that a couple is carrying. That wonderful partner of yours has baggage too.

Now, don’t get me wrong, I’m not saying that all men and women have deep-seated emotional issues that can be damaging to a relationship. Just most of us do, and in our reverse narcissism believe that our baggage is ours to bear alone and that often times it can make us unlovable.

We want to shield our partners from it for fear that it’s too much pain or shame to handle, or that once they know that terrible unlovable secret, they’ll never look at you the same way again. We fear rejection, abandonment, negative judgment of ourselves as people. For those of us who have spent years of our lives in a mostly-successful attempt to constantly make people happy or at least keep them that way, the idea of your partner finding out that one deep, painful secret can eat away at your insides and poison all the love you receive until you feel like their affections are misplaced because you’ve been keeping this secret – that you’re unlovable – for so long. Suddenly you’re not just unlovable you, but you’re unlovable you who’s been HIDING the fact that you’re unlovable. Now your shame has a second layer – that you’ve been keeping the truth from the person you’re in love with. SURELY, if you loved them, you wouldn’t fool them into believing that you’re a lovable person to begin with.

That’s the funny thing about emotional baggage. Sometimes you don’t know that you have it, and at other times, you’re so concerned about it that it eats away at your insides and shows up in nightmares and unnecessary fights.
The truly crazy thing is this – if you handle it together, it’s lighter on both of you.

Until very recently, I didn’t know the strength and patience takes for the “non-burdened” partner to deal with baggage when it’s finally presented to them. I’d always assumed as a mid-twenties divorcee with MS, a seizure disorder, and a crazy family that I was the one in the relationship with the issues, and that SURELY, when my long-time boyfriend learned about all the pitfalls of my existence, he would not walk but run away. Any SANE person would… right? I mean, who wants to deal with disability after he’s already had to convince me that it’s safe to love him and to trust him, when my trust issues were huge. (Funny thing, divorce – it’s one of those “Once Bitten, Twice Shy” situations) He’d have to be someone with an immense heart, and he’d HAVE to be with me out of pity – because OBVIOUSLY, there’s nothing lovable about me, since I have medical issues and a past.

When I finally broke down crying because I couldn’t handle it anymore and I wanted to FREE him of the burden that is loving me, I said that out loud.

“I’m a burden to everyone I love. You would be better off without me. I love you too much to make you suffer with me. Please, just go.”

I expected him to shake his head and just walk out the door, or say “Thank you for understanding. I love you, but I can’t handle this.” Instead, he laughed at me, and then said this – “You are the same woman I fell in love with, with the same medical conditions you always had – you just didn’t know what to call them. Treatments will work out, it’ll just take some time, and I’m right by your side.”
Imagine my shock.

Of course, his acceptance of my unlovable flaw made me love him more – and every day he stays by my side, telling me that he loves me… every day that he catches me because I’m having a seizure, I find myself loving him more deeply than I had the day before. There was, and is, no doubt in my mind that my boyfriend is the very best partner for me I could ever imagine – so you can imagine my sudden “huh?” when out of nowhere he presented some of his baggage to me.

It takes a lot of guts to let someone (especially someone you deeply love) know about fears and weaknesses that go so deeply that you hide them from the world and often yourself. The other day we were talking about household things, and suddenly I was presented with some of HIS baggage. No, he doesn’t have a secret lovechild or a second life as a double agent super spy. His baggage is not something to be shared with the public – but like all fears that act on us, it was based on previous experiences.

Now, I know that I have never ever done anything to harm my boyfriend financially or emotionally. I’m a very loving girlfriend who is often overly responsible and unnecessarily apologetic. I was blindsided – even shocked – by the revelation of new information and its connections to how he feels about us.

My first instinct was to turn it on myself. Obviously, since he’s associating negative emotions with something concerning me, he must think that I will act in the manner of the person who has hurt him in the past. He must not trust me. At the gut level, I couldn’t believe that. Would someone who lives with me, stayed 12 days with me in the hospital, and who knows my deepest, darkest secrets not trust me? Do I believe that this one moment where he’s entrusted me with his fear that I should act defensively or think only of myself? No!

So I looked him in the face and said, “I would never hurt you like that. You mean too much to me.” And in that moment, I saw his eyes soften, his misunderstood anger start to fade, and our relationship become stronger.
In an odd way, it makes things feel more even – him knowing that I’m a physical and emotional train wreck from time to time, and me knowing that he isn’t perfect. (Even if he is.)

Now, I get to take the position he has had to fill for me. I get to be patient with him. I get to show him my love and my trust and my steadfast nature. I get to show him what it means to be safe and loved ALL the time, no matter what.
We get to love each other more because we know each other’s deep, irrational fears and we choose to soothe them and work through them together instead of exploiting them or letting them rule us. I could live in a state of anxiety, worried that his fears will get the best of him and he’ll leave, reinforcing my fears, or I could live in a state of trust and give us each the opportunity to realize that we both deserve the love we have and work so hard to maintain.
I’m glad for the chance to prove how lovable I am just by loving him right back. It’s the easiest thing in the world to do because I don’t even have to try, and I couldn’t stop if I wanted to.

Realizing that’s how he feels about loving me with my condition and my baggage lets me know a very important thing… when it comes to emotional pain and healing wounds from our past, love CAN conquer all.