Awesome!

Yesterday ended up being pretty good.  Mike and I really dithered about going to the ocean--first we were going to go, then we weren't, then we were, and then finally decided it'd be nice to be a little lower key and stay where we could walk rather than drive.

 So we walked to the Paseo and then Old Town and wandered around and window shopped.  We spent about 20 minutes watching children play in the water fountain at the Paseo.  I swear, this is hours of entertainment for both children and adults.  I'd have taken a picture, but it seemed like it would have been creepy since none of the kids were ours.  We were talking with one family with twin boys that the mom said were 18 months old.  And there was one child even smaller that she guessed was probably only 13 or 14 months old.  He was the cutest thing--in a Superman t-shirt and not entirely steady on his feet yet, but having an absolute blast.  And fearless.  And Superman fell repeatedly, but got back up again without so much as a whimper.  And it was really touching at one point to see one of the older kids, who's probably about 8, help him back to his feet.

I think I could watch kids play in that fountain all summer long.


So yesterday ended up being fine, by and large.  Thanks to all of you for your love and support--the FB comments, messages, etc. all mean so much to me.


I know I've kvetched about the Copaxone and the shots and the welts and the itching, etc., etc.  Back when Mike and I still lived in the Palms apartment, we had this great stretch of time with Nic (the one who just got engaged on Saturday--yay!) wherein he was coming over to our place a bunch on Sundays.  It just sorta worked out that way; I guess because we only lived a mile away from each other and things were slightly less chaotic.  They came to be known as "Sundays with Nic."  Anyway, if I'm going to have to do an arm, Sunday is the night it's going to be and one Sunday, even Nic said "oh, god, NO, not an ARM!" because he'd been around for other Sunday arm shot nights and knew just how bad they can be.  Suffice it to say, I avoid doing my shots in my arms as much as humanely possible.

It's big and red and welty and itchy.  And I live with it.  The good thing is that by injecting where I do in my arms, you mostly can't see it, even in a sleeveless shirt, which I wore today.  And thank goodness for hydrocortisone cream!

So this gets me to having an appointment with the medical group neurologist today.  He's grown on me quite a bit and, having said that, I'm also glad that we pay out of pocket for me to see the neurologist at Cedars.  Anyway, Mike meets me there and we go in and he (the neurologist, not Mike) comments that it's been quite a while since I've had an exacerbation.  To which I say, "yes, not since August."  I did make sure that he knew about the uptick in my fatigue about a month ago for five days and also that my hands have been quite tingly and bothersome the past 10 days or so.  I hadn't even mentioned this to Mike, which is unlike me, but I (correctly) knew that there wasn't anything to be done about it and believe it or not, I do try not to bitch too much.  I asked if we should do an MRI this year and he said that if I weren't on a disease modifying drug, he'd probably do them more frequently to check the lesion load, but since I'm on the Copaxone, he doesn't see the need for annual MRIs.  At this point, he confirms with "you're still taking the Copaxone, right?" and I raise my arm and show him the proof of last night. :)


He seems very pleased with how I'm doing and, in the context of all this, I made reference to yesterday being seven years to the day since my diagnosis.  And that gets me to the awesome part; he used a term I've heard before, but never from a neurologist and never in reference to me (emphasis added):


"You have BENIGN MS."


AWESOME.  HAPPY DANCE.  Seriously, I couldn't have asked for a better present today.

I didn't think I was feeling emotional this year

I was wrong. 

I wrote a lot last year about May 13, 2005 being the day I was diagnosed with MS, the road to the diagnosis, and the aftermath.

I talked to Whitney, one of my best friends from college who lives in Montana, a couple of times this week.  She asked how our Cinco de Mike party went and I was telling her about it and how fun (and exhausting it had been) and the beautiful flowers my mom brought us for the party and how Mom had said that she usually sends flowers on May 13, so they were party early flowers for that.  Whit asked about flowers that day and I explained, but said "I'm not feeling very emotional about it this year."  And on Tuesday, I really meant it.

It ended up being a hard week on a lot of levels and I realized I was having more intense reactions to normal life situations/frustrations and at some point a couple/few days ago, it all made sense.  I think I had an unrealistic expectation of myself that I wouldn't feel that bothered this year, like I'd somehow be "over it."  And I'm not.  And as Mike pointed out yesterday, when I was incredibly teary, this will always probably be a hard, strange day for me (like the birthdays and yahrzeit's of loved ones).  I really remember dates (my friend Leah says that I'm her personal historian), so I suspect my memory plays a role in all this, too.  One downside to having such a strong memory is that I remember painful situations more than I suspect most people do.

One thing that was cool was that we ended up back at Varnish each of the last two nights.  We'd had longstanding plans with Leah and Eric to get together and he'd never been to Varnish, so we went to dinner at Nickel Diner and then to Varnish on Friday night, so that was sort of like a re-do of the date Mike planned last year for the 13th (I hadn't been back to either place since last year).  And then we were there again last night to celebrate the engagement of Nic and Mollye (their first date was at Varnish).  Mazel Tov, you two!!

 Mark and Laurel, good newish friends of ours who I absolutely adore, came back to our place after the engagement shindig ended and I was really happy to ring in May 13 with them.  They know I have MS, of course, and when Mike and I sort of had this moment of "it's past midnight, it's the 13th" and explained, Laurel had the most lovely response.  She said basically that she wasn't sure if she should say "I'm sorry" or "congratulations" and I said that it's both, but more than that, how I really appreciated her even having a response because most people don't.  People often don't say much, if anything, when I talk about having MS and I get really insecure about that--like I'm burdening people if I talk about it.  Thank you, Mark and Laurel, for being awesome additions to our lives!

Mike and I had been thinking about going to see the ocean today because that's always good for my soul, but I'm not sure if we're up for a trek across town on Mother's Day when I worry things will be way more crowded than I'm prepared to deal with.  So I'm off to figure out something to do with him today besides regular Sunday life things, like laundry.

Two blog posts in as many days?!

"Write more, ruminate less" were the words of my wise husband, so here goes. :)

First, thanks to Whitney, Erin, and Bethany for replying either here or on Facebook--it means a ton to me.  I'm also going to move to an "opt-out" model re: using first names here, since I asked some months ago for people to let me know if they were comfortable with me using their names and no one gave me permission.  So I'm going to start using names more and ya'll are just going to have to let me know if you don't like it! :P


I think and hope that the fatigue is starting to subside.  Fingers crossed.  But, boy, has it been a bit of a rough ride even since I posted yesterday!


I hadn't been very hungry yesterday and hadn't eaten much and suddenly, just before 6pm, I was STARVING.  And then I got a little nauseated, which I first attributed to being over-hungry and "empty" as my Mom puts it.  So I ate a little.  And the nausea got worse.  I'd had a wicked headache much of the afternoon, but I try not to take too much ibuprofen: about a year and a half ago, when I complained to my neurologist about my headaches, he said that he thought I was taking too much ibuprofen and was getting rebound headaches.  Meaning I'd get a headache, take ibuprofen, it would wear off, and then I'd get ANOTHER headache because the ibuprofen was out of my system.  And so the cycle went.  At his advice, I dramatically cut back on the amount I was taking and although it was a brutal 2-3 week weaning period, it did help with the frequency of my headaches.  Maybe not the intensity so much, but I tend to get headaches that are annoying, feel like pressure, distracting, etc., so cutting back on the frequency (if not the pain level) was huge for me.  This is not to say that they aren't painful (just pseudo-manageable).  I've gotten headaches like this since I was a little kid; my parents took me to a neurologist when I was 10 and I had a CAT scan done and everything, but as my Dad likes to say "he scanned her brain and found nothing."  (although I sure wish they'd scan my brain now and find nothing!!)  With the number of pediatric MS Centers growing and obviously the use of MRI, I have often wondered if my headaches were my first MS symptom, but the technology didn't allow us to know that then.  And, since there weren't any disease modifying drugs available in 1990, I don't know that it was a bad thing any possible diagnosis wasn't made then (although my first neurologist guesstimated I'd had the disease for 10 years when I was diagnosed at 25, so that would have put me at 15, not 10).


But I digress.  So I'd had a headache pretty much all afternoon and it was worse than usual, but I'm wary about taking too much ibuprofen.  And right around the time I started feeling sick to my stomach, my headache got much, much worse.  I didn't know what was happening and was honestly really scared.  I told Mike that I thought he might need to take me to urgent care--that's how terrible I felt.


Mike, however, is a smart man and a good diagnostician and, as we determined that I was having not just a headache but a migraine, he helped me realize that we were doing what we needed to be doing and that urgent care wasn't going to help.  And by doing what we needed to be doing, I mean finally taking not only some ibuprofen, but also some anti-nausea stuff we had, and getting in bed with a cold ice mask thing on.  At 7pm (and I never got back up).  And, hey, self care saved us a $50 co-pay.  Mike was his usual wonderful self and stayed with me for a long time, telling me all sorts of peaceful things and reminding me to breathe and so on.  I am so lucky to be married to him.  I love you, babesy.


So that's my story--I am feeling better, but am going to continue to take care of myself, lay low this week, and hope that the worst has passed.  I'm not adding a blog label of "migraine" because I really hope I go another 10 years without one!!


In closing, I would like to give a shout out to my awesome friend, Leah.  She works multiple jobs, is completing her dissertation, and has still managed to find some time for me and our friendship.  I can't imagine my life without her.  Thank you for listening and for your words of wisdom, dear friend.

Writing and MS

I want to write more.  I need to write more.  All of sudden, seven weeks have gone by and I haven't blogged and my personal writing has been all but abandoned, too.  I wonder "is anyone even reading what I write besides my parents?" and the ugly cousin of that "are people judging me if they are even reading what I post?" and "well, Mike is the real writer of the family, so what's the point?" and on and on.

I told Mike the other night that I had all of these various blog posts floating around in my mind that I was ruminating on and his take was "ruminate less, write more."  Sage advice (that was the refined version of "ruminate less, work more" which I didn't like as well because I'm not sure that I see this writing as work, per se).

I feel like shit.  The fatigue has been really awful for about five days and I even stayed home from work one day because it was so bad.  I do think that the MS impacts my writing (or lack thereof) simply because of all the other things that I need to do to take care of myself.  Those are things that take time and often cost money.  I'm frustrated because there are things that I wanted to do and needed to do this weekend and they've had to be put aside because of the uptick in the fatigue.

I'm angry and sad and feel so terribly isolated from my peers.

I was doing some reading last night to see if there were things about MS fatigue that I hadn't read before.  Webmd says "The best way to combat fatigue related to your MS is to treat the underlying medical cause. Unfortunately, the exact cause of MS-related fatigue is often unknown, or there may be multiple causes."  Awesome.

I did read something interesting on the Cleveland Clinic's website about the various theories related to MS fatigue that I hadn't seen before:

The exact cause of MS-related fatigue is still unknown. There are several theories on the subject:

• One theory is that fatigue is related to the general activation of the immune system. Chemical messengers are called cytokines; these levels are higher in patients with MS and may be higher still in patients with fatigue. One way of describing this is that you may feel like you have a virus all of the time.
• Another theory is that people with MS may have to use more parts of their brain to do the same task as someone without MS; in essence, they are working harder.
• Another theory is that fatigue is related to reduced electrical transmission of signals in the brain.

Whatever the theory, we know that fatigue from MS is a very real part of the disease.

Yes, it sure is.  I hate the fatigue, I hate the tingling, I hate this damn disease.  I know intellectually--or at least I have to believe--that all the things I'm doing (getting enough rest, yoga, acupuncture, chiropractic care, my daily shots, massage) are keeping things from getting worse and helping with current symptoms.  And the reality is that this will still happen and that is so depressing and overwhelming.  And, as Mike said, I haven't felt this bad in quite a while, and there are people out there with MS who I'm sure would kill to feel as good as I do most days.

And I have so very much to be grateful for and, believe it or not, I *do* try to practice gratitude.  As we all know, some days it's easier than others.  And, hey, here's something I'm grateful for since I like alcohol, coffee, and fish.

I am going to try to write more.  And if you read my blog and have a response, I'd sure like to hear about it.

Superwoman is going to bed

As anyone who actually reads my blog knows, Mike is in Chicago handling some family matters.  I'm not going to say more here simply out of respect for other's people privacy.

What this means is that he left Monday morning and was originally scheduled to be back late tomorrow (having a retired Mom who can pick your husband up at LAX when it's too late for you on a school night rocks!).  Things are such that he needs to extend his trip, and I fully support (read: suggested) this.  It's certainly not that I don't love and miss Mike, but I see this flexibility as a blessing of him not working outside of the house right now.

So, what all of THIS means is that I have felt like a superhero this week.  In addition to an incredibly busy and productive week at work, I have done the following since Mike left (not in chronological order):

(for the record, I was going to put this in bullets, but I don't like the singular "option" blogger gives you--I like the square bullet myself)

Had two doctor's appointments

Gone to acupuncture

Gone to the chiropractor

(Finally) seen my wonderful myofascial release massage therapist again for the first time since before Christmas

Gone to Costco

Gone to Whole Foods (note: Costco and Whole Foods were the same night, no less!)

Seen two friends--separately--who I hadn't seen nearly recently enough (3 months and a couple of years, respectively)

Gone to yoga

Seen each set of my parents

Spoken and texted with Mike more times than I can count--I feel a little like a 14-year-old girl with the texting!

Mailed over 100 Valentine's Day cards (I feel a little shy putting that here because I don't want people who don't get one to feel badly--just email me your snail mail address!) and let me tell you, this mailing was cursed.  It started before Mike left and Costco didn't give him envelopes (see above re: my trip to Costco) and that was after he waited in line three times because they lost our order and I had to email him the confirmation email/code while he was at Costco and finally they found them.  And then Mike kindly checked the office before he left and said "we have tons of labels, honey" and it turned out that these mailing labels were from the Carter administration because they had no stick left and I was gluing them to envelopes and the printer jammed as the envelopes were coming apart.  And then I'd stamped some envelopes on Thursday night after fully preparing the out-of-state ones to drop on Friday (see above about glue) and then when I went back to the rest of them on Saturday, I (really, Caryn, really?!) put the sticky mailing labels on the envelopes that had no stamps on them.  It a small miracle Valentine's Day cards went out this year.

Made coffee EVERY NIGHT for the next morning (this is something Mike almost always does and usually when I do my shot)

Done my shot every night except one and I'm about to do the Sunday shot right after I post this

Made my lunch repeatedly, although not every night

Managed the refinance on our condo, which has involved pulling a shit ton of paperwork and talking to our broker multiple times this week

Three loads of laundry (technically the third load are towels that should be dry, but I will be dealing with those tomorrow) 

Which leads me to the title for this post.  I knew that Mike was at No Shame Chicago and up and out super late, so I texted him last night (see above about being a 14-year -old girl).  I said that I had done so much this week, I felt like Superwoman, like making coffee and folding a fitted sheet at 11pm on a Saturday night.  Mike had a very sweet reply, to which I said "Superwoman is going to bed."

So with that, Superwoman is going to bed. :P

My surreal experience with Richard Simmons

First, an oops about being a rather crappy blogger.  One of my friends asked if I was just done with blogging and the answer is no.  Life has just gotten in the way and I think I need to consider doing more, but shorter blog posts.  Another said they’d like to see the things I don’t blog about; their perspective was that I should consider an anonymous blog.  Food for thought.

I can’t believe it’s only been a week since my time with Richard Simmons (it’s been one of those weeks where I’ve been so busy and so much has happened, it seems like it must have been three weeks ago).  Anyway, the baby shower of one of my best friends was this time a week ago and one of our other friends came in from out of state for it.  She wanted to go to the Slimmons Studio.  And, no, that’s not a typo on my part—that “L” is supposed to be there.  Richard teaches on Tuesday, Thursday, and Saturday, his travel schedule permitting.  So after we confirmed that he would be teaching last weekend, we headed over to Beverly Hills in some rain and arrived in our workout gear, with water bottles and yoga mats, just under the suggested hour early to secure our places in his class.

I dutifully completed their paperwork that included so many medical questions you would have thought it was a doctor’s appointment; upon handing it to the woman at the front desk, I realized that I needn’t have filled it out accurately because she didn’t seem to care that I have had a history of things like chest pain.  So I handed her my form and $12 and ask where the ladies room is.  She says “do you have to go really badly?” to which I reply “yes, I’ve been drinking coffee all the way from Pasadena.”  She laughs and explains that it’s through the workout room, where Richard is having his motivational group meeting and gives me permission, but cautions me to “be quiet.”  Fair enough.

So I opened the door and tried to avoid excessive squeaking of my slightly wet-from-the-rain sneakers by tiptoeing.  At which point, Richard (yes, we’re on a first name basis by now) stops his group meeting.

Richard: Why are you tiptoeing?

Me:  She told me to be quiet.

Richard: What’s your name?

Me: Caryn.

Richard: Caryn, you can be as LOUD as you want!!

I mumbled some sort of “okay” or “thank you” or something and went on my way.  Upon my exit from the ladies room, Richard again stops class.

Richard: Are you an actor?

Me: No.

Richard: What do you do?  (I later learned this was a frequent question of participants during the actual workout).

Me: I’m a fundraiser.

Richard: Have you ever slept with someone to raise money?

Me: No.

Richard: Not even once?

Me: No, I mostly write grants.

Now, I’m not sure why “I mostly write grants” seemed to me at the time to OF COURSE be the most logical response to the question “do you ever prostitute yourself?”  Because, naturally, people who mostly do special events or major gifts would be much more likely to prostitute themselves for their organization (rolling my eyes at myself here).  All I can say is that I was punting.

So after a looong wait in a small and crowded front room, the doors open.  And madness ensued.  The sign said that capacity was 112 and I think there must have been 150 people in the room.  There wasn’t really room to move around and spread your arms and lift your legs without being hit or kicked by someone else and/or hitting or kicking someone else.  But it was a good workout: class was an hour and a half and we did aerobics and weights and then got on our yoga mats for abs and push-ups.  We were warned that class was being taped for his youtube channel and you can watch it here:

Fun phrases Richard used included “We’re doing 25, there’s some mayonnaise on your ass!”  (see 2:50 on youtube)  He would ask people their names and what they do and then when we were on the floor doing the push-ups and ab work, there was the poor guy he asked “When was the last time you had sex?” and when this was met with a pregnant pause, Richard said “I’m waiting.”  I felt bad for floor guy because his reply of “a few months” was met with gasps of horror interspersed with laughter by the college girls behind us.  I felt bad for me because I have absolutely no rhythm and so I was not infrequently off on the various moves we were supposed to be doing.  I figured that I was getting a good workout if I just kept moving!

And then at the end, Barbies were raffled off.  It wasn’t clear if this was a regular event or if they just happened to have a cowgirl Barbie (see 10:12 on youtube), and the Faith Hill and Tim McGraw combo (see 10:32 on youtube) on hand for the country theme of the day.  Birthdays were celebrated—those folks were called up and received a necklace with a small Richard on it.  Other moments to watch for are his bandana shirt and how there are vents between the bandanas (thankfully, only on the shirt and not the shorts!).  And at 10:06, you can see him kissing my friend’s hand—I leaned over to tell him she was from Montana.

No phones, cameras, etc. are allowed during the workout, except for their person filming for youtube.  But he stayed after for lots of pictures and signing t-shirts people bought, etc. and was incredibly gracious.  And, god bless, he’s 63.  I hope I’m moving like that in over 30 years!

When I went up to have my picture taken with him, I had one last exchange with Richard.  I told him that I’d lost 55 pounds from my heaviest and he said “And you couldn’t BE any prettier!  Now you’re just doing it for your health.”  I was—and am—perhaps overly excited that Richard Simmons called me pretty.

Two good doctor’s visits in as many days!

Hooray!!  I had a good visit to the ophthalmologist on Thursday and an even better visit to my wonderful neurologist on Friday.  I’m tremendously grateful for both (and for a flexible employer who understands!!).

I went back to the ophthalmologist after visits in March and October.  My OCT test showed retinal nerve fiber damage in March in my right eye, which wasn’t too surprising because that’s the eye where the optic neuritis (my first MS symptom) appeared in 2005.  In March, my left eye was normal.  In October—after my exacerbation at the very end of August—my right eye was worse, albeit slightly.  My left eye, which had been normal in March, had statistically significant damage.  Gulp.  So back I went on Thursday and, let me tell you, my anxiety level about this doctor’s appointment was high.  Like “she’s going to tell me I’m going blind” high.

The retinal nerve fiber damage in my right eye is a bit less than in October and my left eye is stable from October.  Now, this still means that there’s damage there that wasn’t there in March, but since my vision hasn’t been affected at all by this (yay), stable is pretty damn good.  And my optic nerves aren’t swollen and they’re functioning well.  BIG sigh of relief.  And my ophthalmologist gave me a stern talking to about how I shouldn’t get so anxious about visiting her because that’s not going to help anything.  Hanging head here—this continues to be a work in progress for me.  She had said in October that the OCT spoke to the importance of my MS being well-controlled and on Thursday said that I should stay on whatever I’m on.  That would be the Copaxone, so here’s a shout out for the big welt on my upper left arm from where I just did my shot.  And I mostly mean that sincerely.

Friday, the news got even better when I went to my neurologist over at Cedars.  He is one of the most thorough doctors I have ever had—like 35 or 40 minutes in the room with me kind of thorough.  When was the last time you had a doctor spend that much time with you, right?  His diligence and bedside manner are without a doubt worth the trek to Beverly Hills to pay out of pocket a couple of times a year.  My exam was the same as it was in May, meaning that there’s no residual damage from the exacerbation in August.  We talked about the course of my disease (a hard and scary topic for me) and I commented that my disease had progressed in terms of the tingling and the fatigue.  He actually doesn’t consider this to be disease progression because both of these are “pervasive” in people with MS.  Now, this doesn’t make dealing with either of these things any less annoying, uncomfortable, or disruptive for me but the idea that this doesn’t indicate disease progression was pretty awesome.  Of course I’d prefer not to have MS at all (I think that goes without saying), but he said that it was “fantastic” that my MRI in April was the same as my MRI in July 2009 and my exam was the same on Friday, even after a relapse.  And I’m not doing any long term myelin damage by enjoying a drink, also a relief.  He’s very happy with my yoga practice and we talked about how exercise does help with fatigue.  I’m working on getting in even more cardio (isn’t that consistently a work in progress for all of us as we juggle so much on our plates?!).  We also talked about my headaches, which have been pretty constant; although I think it’s been sinus shenanigans the past week, I also had a headache for about three weeks+ before that.  I’ve had a headache for about a month (not so fun, let me tell you) and I’ve been avoiding taking painkillers because of the rebound headache issue we addressed a year or so ago.  At my neuro’s suggestion, I am trying two generic Alleves twice a day for a week; he said that sometimes a course like this is enough to break the cycle without a longer-term commitment to medication (which I’ve been on before).  So fingers crossed that this will help.

Basically, it was all pretty freakin’ great news.  I feel so relieved and reassured and I think it was some desperately needed good news for me and Mike.  I feel a renewed confidence that I can have a good life, even with a maddeningly unpredictable disease like MS.

And Mike made the playoffs in his fantasy football league for the first time in 10 years, so I also have a *very* happy husband

Things are looking up!