Weekend Report Card for MS

Energy Level for Shopping on Saturday A+
Energy Level for Party on Saturday Night A
But You Look So Good Appearance at Party A+
Sleeping Through the Night on Saturday Night A+
Waking up at a Reasonable Hour on Sunday A+
Energy on Sunday B-
Gardening on Sunday B+
Doing Stuff Around the House (cleaning, etc.) D+
Making a Healthy, Tasty Dinner for the Family on Sunday A-
Getting the Kids Bathed and In Bed with Limited Drama B-
Going to bed early on Sunday night to prepare for the week F
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Dear Multiple Sclerosis,
Thanks for not totally sucking this weekend. Although, the spreading news of your body invasion resulted in several head tilt, arm squeezes of pity on Saturday night, they were almost canceled out with the "But You Look So Good" compliments and the leering looks of men who were unavailable and did not interest me in the least. Hey! I'm shallow; what can I say?
With gratitude,
Lazy Julie

Dear MS

Dear Multiple Sclerosis,
I do not regret to inform you that you will NOT my disease this weekend. You will not pass GO and will not collect $200. In fact, you must leave the premises (my body) immediately and you will not receive any severance package of any kind. I will nott miss you and will not be sad to see you go. If you contact me in any way, shape or form this weekend, I will immediately contact the authorities and have them kick your ass. I have plans and you will NOT ruin them for me. If you are desperately in need of a host body, I suggest Kim Jong Il.
Sincerely,
Lazy Julie

Whining Questions to Dump Before Bed

Why do all the other MS bloggers have awards except for me?

Why, if the neuro and the radiologist have confirmed that I have new but not active lesions, do I have to continue taking the Rebif and why the hell did I throw out my 10 or so remaining doses? On a related note, which body part should I stab tonight? Or rather, which section of my ample ass should I use for the injection this evening?

How and when am I going to shift my focus and energy back to my book proposal and finish compiling the first chapter? Should I finish my 4th step (as in the fourth of the 12 steps) first or is that just a delaying tactic?

What the hell am I going to wear on Saturday night to my first grown-up party in a while and should I have said "no" to the second brownie if I really want to look my best?

Why does my ex even think about taking a job that can't guarantee him every other weekend with the children?

Who am I most like: Carrie or Miranda and when the hell will I find MY sex in the city?

If and when the Universe decides I'm ready for another relationship, at what point do I tell the guy about the MS?

World MS Day

Enjoy it while it lasts, MS. If I have anything to say about it, this will be your final commemorative holiday and next year we'll be celebrating your extinction.

Welcome Newcomers

For my new visitors and followers, I'm thinking it must be really confusing to just JUMP into my journey with MS. I mean, this woman has MS but she's going on about dead dads, politics, whining about lesions....?WTF? Where is the context? Where is the humor? What's it all about and, in the words of Admiral Stockdale , "Why am I here?" (Remember him? Ross Perot's running mate? I absolutely loved the late, great Phil Hartman's impersonation of him running alongside the car with Ross Perot driving. Or was it the other way around...?)

But, I digress.

If you are newly diagnosed with Multiple Sclerosis or know someone who is, welcome! This is the best club you never, ever wanted to join. I wish you peace and strength as you navigate the world of this chronic, live-changing illness.

And, once you settle in and get comfortable, I'd also like to invite you to be open to the blessings of MS. To paraphrase Michael J. Fox from Always Looking Up: The Adventures of an Incurable Optimist: For everything that MS has taken from me, it has given me an even greater gift. Swear to God. If you are sick, scared, in pain, or all of the above, you are probably questioning my sanity and/or sobriety. You wouldn't be the first. I kid you not, though, that I thank theUniverse for giving me Multiple Sclerosis. That doesn't stop me from whining about it sometimes nor is it intended to discourage whining on your part. Whining is part of my journey, too, and it helps me get to the place of recognizing the up-side.

Don't get me wrong. I want to find a cure for MS. I want better treatment that does not involve horrendous side effects, self-injecting medication, and regular infusions. I want to support scientists who are using stem cells and other technology to reverse nerve damage and give people back full use of their bodies, minds, and spirits. I want our children and children's children to not get pulled into a private room and hear those frightening words, "You have MS."

But I do have MS and that cure is not here yet. Lemons are all around me and I can either pucker up or get some sugar and make me some lemonade. I've chosen the latter and that's what this blog is all about...most of the time, anyway.

Since I was diagnosed, a lot has changed in my life and it's not all bad. Although my vision has diminished to the point that I no longer drive, I now reach out for help and rides and rarely go to meetings alone anymore, which has improved my social life and decreased isolation considerably. I'm also taking public transportationever where which is much better for my pocketbook and the environment. I never figured out a way to read and drive at the same time but I'm getting lots of reading done on the T.

I have less energy than I used to, which means that I have to choose carefully before deciding to do something. I make a point not to waste energy on silly/unimportant things (most of the time). I prioritize in a way that I have never been able to do and I spend my energy on the things that are truly important and meaningful to me. I take better care of myself and don't burn the candle at both ends like I used to do. I now view rest and relaxation as completely valid and worthwhile activities.

Stress does terrible things to people with MS. Since stress does terrible but more invisible things to everyone else, I'm benefiting all over the place by doing conscious acts to reduce stress in my life (yoga, meditation, work/life balance, etc.). If I didn't have the visible MS stuff to remind me (fatigue, numbness, more vision issues, pain, etc.), I would probably have just as many excuses as everyone else about why I can't reduce stress in my life. Now, though, if I decide I'm immune to stress, it knocks me on my arse and reminds me who's boss.

Heat is not good for MS. Most people with this wonderful disease, including me, notice an increase in symptoms in the hot weather. I used to love to lay out on the beach for hours at a time. In recent years, I've worn sunscreen, but still, some of thoseUVA/UVB rays have, no doubt, gotten through. Now, I limit the amount of time I spend in the sun and often choose shady spots to hang out in order to reduce symptoms. Who knows--I may even be staving off skin cancer at the same time.

When you have a disease like MS that can affect literally any part of you that's connected to the central nervous system (in other words, ALL OF YOU), it's hard to know what's MS and what's just normal aging or clumsiness or whatever. Although I am the first to point out thesuckiness of that fact, I'm also aware that I am way more attuned to my body and mind than I ever was before.

Before MS, I always wanted to write beyond the copy I crafted for my job. I was a writer who wasn't writing. Now I write. MS has been my catalyst, my inspiration, my muse, if you will. Even after they find a cure and people view MS like we now see polio, I will be grateful that I had it. I will be grateful to MS for giving me these gifts. I'm not sure, but I don't think I could have received them any other way.

If you are new here, I hope you will come back. There are some helpful facts about MS in the right margin and sprinkled throughout my posts. You can also visit the National MS Society site. for information and resources about Multiple Sclerosis. This blog is filled with my opinions, my voice, my feelings. You are more than welcome to share yours here via the comments feature or even start your own blog if you have a lot to say. Or maybe you want to write a poem or paint a masterpiece, or do a photo essay. Whatever you do, find your voice and when MS tries to shut it up, tell it to screw.

Ow.

I was feeling great. I really was! And now both of my wrists hurt. Did I sleep wrong? Is it MS? Am I just old and tired? Is it psychosomatic since I know there are new and active lesions? Did I jinx myself by talking about feeling so good? Does it matter?

I'm in great spirits, though, and I'm looking forward to dinner out with friends tonight and going to a meeting and writing with my sponsor tomorrow.

Screw you, MS!

The lesions are active! The lesions are active!

The title of this post is meant to be read with the same enthusiasm as "The British are coming! The British are coming!" but, obviously, I don't have the ability to reach through the computer screen and force you to do that....or do I....? (mmmmwwwaaaaahhhhhahahahahaaaa!)

I had a big day at the Partners MS Center yesterday morning. First, an appointment with my neurologist, Dr. Lopez-Diego. Unlike all too many doctors, she is always on time, always dit, and always shakes my hand hello and goodbye. I like these qualities in a physician. She acts like she is an expert that I've hired to take care of something outside my skill set...which she kind of is. We are partners in treating my MS. Also, she's a woman and probably a little younger than I am. Dr. L-P definitely perpetuates the stereotypes that female doctors are more empathetic and humble and younger doctor's are more progressive and open minded.

Although I was anxious to see the MRI results, I first had the overall neurological clinical workup. I did the walking down the hall on my heels and my toes thing, the flipping my hand over and back, and all the other tests of my reflexes, strength and vision. These vision tests frustrate the hell out of me since I can't read any of the letters on the card with my nerve-damaged right eye, but I still have to cover my left eye and try anyway. Next time, I think I'm going to memorize the card and pretend I can read it or maybe I will read something that isn't there. I could say: "Why it's a miracle! I can read it! It says I A M B L I N D I N T H A T E Y E!"

After the neurological games, we sat down to look at the MRI results on Dr. L-P's computer screen. Although the neurologist and radiologist are not in complete agreement about the particulars, there are definitely more lesions on my spine and in my brain and the contrast shows activity (whatever that means) in at least one of the lesions.

The radiology team and the neurology team are going to have a pow-wow this week to compare the old MRIs and the new MRIs side by side so they can agree on a final report. I guess there's no such thing as a dissenting opinion when it comes to MRIs.

So, what do these results really mean? Dr. L-D believes that the thrice weekly Rebif injections and monthly solumedtrol infusions are not working as well as she had hoped. I get the impression this is supposed to be bad news but I'm not feeling bad about it. Perhaps it's denial. Perhaps it's just my fabulous, optimistic attitude. Either way, I'm focusing on the positive:

1. Once Dr. L-P changes my treatment, I will no longer have to give myself an injection of Rebif 3 times a week. Can I get a Whoot-Whoot?!
2. I will no longer have to go into the MS Center once a month for infusions of solumedtrol.
   
3. I will not have to get blood tests every couple of months to make sure the Rebif isn't damaging my liver

So, what's next? As soon as the MRI results are finalized, I'm going to stop taking the Rebif and start one of two possible low-dose chemo drugs: Rituxan or Cytoxan. I asked Dr. L-P about Tysabri but she doesn't feel comfortable with the 8 US cases of PML--a very rare, but deadly brain infection. I am leaning toward the Rituxan since you only have to get 1-2 infusions a year and hair loss isn't one of the possible side effects. I may have MS but I am still vain enough to want my hair.

The funny part about all of this is that I feel great. My vision sucks but I don't have fatigue, leg pain, headaches, or any numbness. Physically, I have absolutely no complaints. Seriously, until I open my eyes and have trouble seeing things in the morning, I can easily forget I have MS. Although this could just be the calm before the storm, I'm going to enjoy it while it lasts.

Shrinkage, Vision, and Drugs

On Wednesday, the neurologist will give me the results of my latest MRI series. Unlike men who step out of a swimming pool, I am hoping for shrinkage.



Since I have no penis and this blog is addressing MS issues, I probably don't need to specify that I'm hoping for shrinkage of the MS lesions in my brain and on my spine. I'm a stickler for accuracy, though, which is why I'm mentioning it anyway. I think, even a status quo lesion status wouldn't be terrible since it will show no progression of the disease. More or larger lesions are definitely not what I'm looking for.

I'm also going to talk to my neurologist about another neuro-opthalmology evaluation. I have suspected for some time now that my vision is getting worse, although the regular opthalmology exams show no further detioration. I think it's a constrast issue plus my vision is worse when I'm in motion and/or tired. This article seems to concur with my instincts.

I suspect we will also discuss my ongoing treatment and MS drugs. I don't trust the objectivity of studies that are funded and conducted by the drug companies that makes the drug being studied but I'm reading a lot of positive stuff about Tysabri lately and some of my fellow MS bloggers/online buddies are singing its praises in their own lives. Here's one.

It's been my understanding that Tysabri has potentially dangerous side affects (namely possible death) so it's sort of a last resort thing if other, safer drugs aren't working. Not so, according to this article.

Still, I'm a firm believer in, if it works, don't fix it. So if there is shrinkage or the size and number of my lesions is status quo, I will probably stick with the Rebif. I have no real side affects (besides bruising and pain at injection site which you kind of expect when sticking yourself with a needle three times per week).

According to this drug company study (again, possible objectivity issues should be considered), Rebif reduced the number of active lesions by 78% compared to the same group of MS patients getting a placebo. (That would suck, wouldn't it? You have to give yourself a shot three times a week and it is basically water that does jack shit to slow the progression of your MS?)

Denial is Fading

I have an appointment with my neurologist next week to discuss the results of my latest MRI series. I realized today that I am NOT secretly expecting she's going to tell me there was a really big mistake and I don't have MS.  

That's a first. Usually, with each appointment I am absolutely positive that I will leave there, head reeling, but MS-free, feeling kind of sheepish and stupid that I made a big deal out of nothing.

Nope. I still have MS. Feeling pretty good, though. I have sensation in all my extremities, have pretty good energy level (no mandatory napping when I suddenly start nodding over my computer), no MS hugs, or leg pain.

I am, however, very sad, but trying to keep all that non-MS emotional crapolla on my other blog. 

DJ Lazy in the MRI Tube

I spent two hours in the MRI tube tonight. 

That's not counting the hour it took to travel to Brigham and Women's Hospital, the 45 minutes my appointment was delayed, the 15 minutes it took me to fill out the forms and put on my johnnie, and the hour and a half it took to get back home. 

That's right. My bi-annual MRI (although I blew off the series I was supposed to have last summer so technically it's my only one this year), took 5 1/2 hours or, in babysitter talk, 55 smackaroos. The kids and I love our babysitter, Ash, but I would have rather had a spa day with a friend or gone to a concert with this me time.

But, it was not a total waste of time.  I have a new idea for a musical project. I am going to become a DJ.  I'm thinking my stage name will be DJ Lazy but I'm also considering Lazy I.M. 

Seriously, though,I want to work with a musical producer or sound engineer or one of the other very talented audio people I know to remix the really, really loud sounds that are blasted into one's ears during an MRI. I want to take those horrible but incredibly rhythmic sounds and create music.  I got the idea when I was trying to not move my eyeballs during the brain scan and trying not to swallow during the thoracic and cervical spine scans (with and without contrast). I tried to imagine dancing to each sound like it was a percussion instrument.

For those of you who have not had the pleasure of hanging out in an MRI tube, here's a little sample of what you're missing. 

Imagine a mix of the machine gun rat-a-tat-tat sound with the electronic water drip torture sounds with maybe the clunk, clunk transition sounds in between.  I'm telling you, I am really onto something. People will hear the MRI mix in clubs and beg their primary care doctors for an MRI referral. It will spawn expressions like "That's magnetic resonance, man!" and "I had an awesome weekend. I was in the tube!"

I found this video that was created for children to prepare them for MRIs. I have decided that my next MRI will be at a pediatric MRI center. I want movies!

Staying on Top of My MS Game

What's the difference between MS nerve damage and MS symptoms? I think it a question of permanence. Symptoms are temporary and nerve damage is...well, permanent...at least until they figure out how to reverse it. The visual impairment (aka, optic nerve damage) appears to be ongoing (aka, permanent). The numb feet symptom...ALL GONE! Can I get a WHOO-WHOO?!

WHOO-WHOO!

I think that this mini episode taught me that I have to stay on top of my MS game. You know...keep up with the self care and reduce the stress. I can't NOT have my boyfriend break up with me or NOT have my dad die (well, I guess that won't happen again, will it?), but I CAN keep up with the things that make me feel better: good sleep hygiene, Rebif three times per week, monthly steroid infusions, yoga, walking, meditating, etc.

I'm getting a full MRI series (brain, cervical spine, and thoracic spine with and without contrast) on Wednesday. I'm prepared for the boredom, claustrophobia, and inability to fall asleep this time (my eyeballs move when I sleep which makes it hard to get a good look at my optic nerves), so I'm bringing my iPod with a bunch of public radio podcasts. I know I'm such a geek, but it will keep my awake and oblivious of the fact that I'm stuffed in a tube for 3 hours.

I have an appointment to discuss the MRI results with the neurologist next week. The MRI is supposed to tell her and me how the MS is progressing. From what I gather, if there are many more lesions or if the lesions that were there are bigger or more active or whatever, she may consider changing my course of treatment. If, however (and this is the option I'm rooting for) the disease has not progressed significantly, then I will stay on the Rebif and monthly steroid infusions and hope for the best until some of these studies pan out and all the very talented scientists on the case find a cure, reverse the damage, or come up with effective oral meds.

This UK Telegraph article reports on a limited study that showed how adult stem cells reversed symptoms but not nerve damage.

This MedPageToday article has really great things to report about the efficacy of oral MS meds. And another, in Health News, singing the praises of a combination of two oral drugs.

This PeerView Media Bar story suggests adding a steroid injectable interferon beta drugs, slows down the progression. Based on my lay person's sensibilities, it seems like this goes along with the neurologists ideas of giving me Rebif AND the infusions of solumedrol (another steroid).

This EMax Health article summarizes research that was presented at the American Academy of Neurology about finding a thingamajig called glutamate that gives info about the progression of the disease and, therefore, may be a key to better treatment.

This Medical News Today piece describes the discovery of a protein that apparently eats both myelin and gray matter. I'm quite sure I am not getting that right since I'd rather not think about anything devouring my gray matter, but read it yourself. Perhaps you have enough gray matter left to understand it better than I did.

In the meantime, though, I'm going for the gold.