it takes one to know one

thank god (and thank you, thee readers!), i have continued to get steady fan mail (aka: correspondence from friends- doesn't it just SOUND more glamourous?!), but i have discovered something new about you people... my fashionistas have become fashionistas with a CAUSE!!

on thursday, meredith surprised me with beautiful hoop earrings that featured various shades of my signature color (turquoise) stones. she needed a quick pick-me-up (i've been a bit down in the dumps), but the requirement was one with a deeper meaning. enter gray lady jewels, a jewelry shop out of riverdale, ny. they design classic jewelry, with a trendy edge- bracelets, earrings and necklaces. here's the best part. a percentage of each purchase is donated to the National MS Society and/or Habitat for Humanity. they will send your item(s) directly to your best friend, mother, sister, coworker, boss (i could go on here...) with a card that i swear could be handwritten. (either that or they have an awesome font generator that eerily matches mere's handwriting) even the card is classic, yet trendy!



today, i woke up knowing it was going to be a bad day. i was surprised to see i hadn't sprouted a 3rd eye, or the wicked witch of the west didn't greet me at the bathroom door. (actually, i spilled coffee all over my enter bed- the bedspread, the blanket, the sheets, the mattress pad.... i think it's time to admit i can't hold things with 1 hand anymore. does anyone know of classy coffee mugs with 2 handles? and no, not a sippy cup.) but my luck changed with the ding-dong of the doorbell and Fed X deposited a box on our front steps- it was so heavy that i thought a dead body was inside (since it was from Arnold, and we all know the hours my old team works, so it wouldn't have been much of a surprise- JUST KIDDING YOU GUYS!)

i knew that claudia had been working on packing up my cube, and since i hadn't seen evidence of my work life in months, it was almost like getting new toys! but lying on top was DEFINITELY something new. little miss lindsay, with her ever the roaming fashion eye, was catching up on some reading (free time, what? ad agency workers don't have free time!) when a write-up caught her eye...GLAMOUR had snagged 6 new designers to collaborate with Splendid on their "Fashion Gives Back" t-shirt collection, with 30% of sales going to the charity he/she supports. Rodarte's design, a collection created by 2 sisters from Cali, was benefiting the National MS Society. (you can't see this on the picture, but below the black and white bulbs scattered throughout the design, there is ONE illuminated bulb in the front which has the designers' john hancocks featured below!) i should have been on to their scheme, such tricky little kids- come to think of it, i had thought it was odd claudia had taken so long to gather up my things (she's usually johnny on the spot) ...but i just chalked it up to my cube being a complete paper-filled, forest-killing mess in my absence.

cheers to such thoughtful friends, who keep fashion in mind with philanthropy!

"I like my money where I can see it... hanging in my closet." (Sarah Jessica Parker/Sex in the City)

Here goes week #4...

*photo: this is the most fun i've had w/ my cane (duh, Lori involved)... applicable to my rant re: walking a few paragraphs down...

going on week 4, and we have made a SUCCESS on the health front! No, don't get too excited, no new neurologist + infusion center put together, but we have made contact with an awesome physical therapist, Beth. she is very perceptive, extremely smart, and most of all- is SHORT. for those of you that don't know, i have a great record of health care services with short people. after my examination, we sat down (she brought mom in- smart idea b/c i was already exhausted and knew mom would pepper me with questions on the drive home) to go over her observations and initial plan. key stats:

- she has treated many MS patients before, BUT the 1st thing out of her mouth was to emphasize no MS patient is ever alike, and there is no such thing as a "typical" or "textbook" MS patient. this helped my extreme insecurities after the cocky neurologist ripped into me last week. i'm already likin' this lady!

- 1st step: before we attack my issues w/ walking (gait and coordination), muscle deterioration and exercise plan, there is still a substantial amount of pain and overall body "problems" that need to be addressed. she is going to use a process called myofascial release (wikipedia has the most comprehensive explanation) since my body is still extremely sensitive to the touch and induces pain very easily. the myofascial technique is not as painful as a deep massage, but still targets the deep muscles. the "goal" on the wiki site is exactly what she is aiming to do: eliminate pain, increase range of motion, and balance my body.

- weakness & stiffness: my entire body is weak, but especially my legs (yay! i still got the arms!) in addition, my torso, even stretching into my shoulders and neck, is extremely rigid. this helps to explain my difficulty breathing and at times, pain upon breathing. my torso literally doesn't move- she even showed me how she was trying to push down on my hip bones/area and nothing budged. <>

*okay, okay, i have to admit, i felt a tiny moment of validation- when i went to the ER during week #1 (hot doc experience #2) unable to breathe, someone in my family (ahhhem, mom) was determined it was a panic attack. altho the hot doc didn't think so, i now feel justified that it was/is a real physical problem (in the eyes of others<>

sorry, back on topic- why is this torso stiff/rigid issue so important? your torso is the center of your body, the center of your balance. if you become off balance, you compensate with your arms and/or legs (this usually isn't a conscious effort)- however, i cannot use either, causing me to lean/tilt without assistance to steady myself. in addition, i had not brought in my cane (another attribution to dr. cocky neurologist- he belittled me for using it)- she said i most definitely need to use it (aughhhhhhh- it is not a good look on me!) if i am walking without my cane, my body has to work SO hard to stay balanced, not fall over, etc.- and guess what happens? i become easily fatigued. but WITH assistance (cane, hot guy on my arm, leading eye dog- ha jk), i am steadied and can save energy.

- face pain: i told her about what the crazy alexandria neuro-opthamologist (isn't boarded in one medical specialty enough?) said, how my eye pain was actually migraines in my eyes. (huh?) she said that this has started to become something more talked about, but to be honest, she wasn't quite sure what it was, OR if the medical community themselves isn't quite sure what it is, so they're calling it that for now. when she pressed against my jaw and face area, it was incredibly painful- again, she said that didn't surprise her- she has never had an MS patient that didn't clench. i hadn't realized this was a problem, sometimes i was aware of it, but not frequently. she explained that b/c of my history of sleeping problems (lately i have built up to 5 hrs of sleep the past few nights!!!! what an achievement!- well, clearly not tonight!), that was prob why i wasn't noticing the clenching (longer sleep=longer periods of clenching, which would become extremely sore and more noticeable in the AM or throughout the day). from her observation, she thinks that my headaches are tension headaches, not only from the face pain, but also the "torso situation" (<>

- spasticity: again, she shocked me by asking if i was experiencing any spasticity- yes, of course, it's one of the most difficult/painful issues for me right now. (i had a general info link on spasticity, but link isn't working- google national ms society and spasticity) i was so amazed that she could tell that merely by her observation (there is so much to share by now, that i always leave out key details). she explained that this comes out of the stiffness and rigidness in my body mentioned above, in addition to my posture (b/c my torso is rigid/weak it can't support my body at times). many of you have seen this involuntary jerks and uncontrollable spasms- almost seizure like at times- she explained that this contributes to my extreme lower back pain and also to some of my leg pain.

- to help alot of my issues, some of the answers will initially be guesswork, and will require me to be extremely honest with beth about my physical symptoms and fatigue/pain both during and after the session. while i suspected this, she vocalized that in order to improve these symptoms and be able to function with them, i will have to follow her plans exactly- and NOT OVER DO IT! (slight personal problem with this, i have tended to go over the top in most everything in my life!) but overdoing the exercises could cause more damage and set my progress back even more. she referenced that some of my "homework" would be as minimal as 3 reps, 4x a day.

so what's the "plan"? we are reassessing in 4-6 weeks- maybe then i can graduate to using an exercise bike!!! wow, the little things that make me happy these days... to be completely honest, the positive experience at the PT on thursday changed my outlook on the entire week, and it has ended on a high note. i am now singing praises for PTs and have a total respect for how they can push/prod/pull on your body and identify your problems and suggest solutions. without lisa, i wouldn't have started on the gluten free (and now trying to include sugar free) diet, and would still be miserable with nausea, an attractive puffy-ness, and other GI issues you don't want to hear about. and with beth, maybe i'll be dancing in stilettos a year from now! hey- a girl has to aim high...

lessen/goal of the week: i think i'm going to have to work on my patience.

Holly GoLightly

i have officially moved into my parent's house in the countryside of PA. on the drive up, with one cat crying incessantly and another trying to sit on the dashboard, i contemplated my next life. i could entirely reinvent myself (hence the title of this posting in a audrey hepburn style.) know one knows me here- no high school buddies, no college roommates, no coworkers, no neighbors. sounds a bit lonely when i put it that way doesn't it? i haven't had any interaction with the locals- sometimes i feel like i'm at a sanatorium, like they did in the "old days" when family members became sick with diseases.

i decided to start this blog for a multitude of reasons. there's the obvious, it gives all my friends and family a way to see what i'm up to without writing repetitious emails into the early morning hours. (sort of a cop out) i can give the standard health update so no one feels awkward about asking and receiving the same answer day in and day out. but it also is a way for me to work on my "secret project" and no i'm not sharing it with you. i share enough with you people, give me one bit of privacy here! (says the girl that is writing a blog) so i'll give a quick update on the first 2 weeks of my "temporary" living arrangements (mom points this out constantly- i don't know if she's trying to make me feel better about the less than stellar circumstances or if she's trying to oust me before i become one of those 36 year olds living in their mom's partially unfurnished basements.

"the move" : i had a not so nice run in with my slightly batty landlord. emotions are a bit heightened, which i'm using as the excuse for the snarky email exchange i got into with her over sections 28a-f of the lease. dad's brilliant idea of driving the Hertz moving van through the backyard to the basement doors went fabulously- until it got stuck in the snow. i am starting to think he had this planned all along so he could try to do wheelies with a bright yellow truck but supposedly he had "planned" this- the tow truck receptionist said "oh you're the guy that called last week to ask if we could haul out moving vans." (photo evidence above) my brother's highly anticipated animal experiment (where we introduce my 2 adorable fat cats to my parents' crotchety old cats and golden retriever) is still ongoing. my paranoia over my babies has led me to believe they will be scarred for life by this interaction. therefore, i keep them in my room at all times except to allow them the run of the top floor (this is enough to awe and amaze them since they're used to living in a shoebox with no view.)

the Tysabri Factor : apparently no one in PA has MS. i say this because we have not found a doctor within a 50 mile radius that prescribes Tysabri. (actually, that's a lie- 2 do, but they do not have an infusion center b/c of a turf war with the oncology department so they send their patients an hour and a half away to another infusion center) In fact, Geisinger Medical Center, which is a huge and widely respected hospital comparable in reputation and talent to the Mayo Clinic, has an MS Clinic, and is only 30 minutes away. However, they do not have a neurologist in the clinic that specializes in MS (I know, I was just as confused as you are now.) MS Clinic, but no MS neurologist. Hmmm. In addition, all of the doctors in the clinic are enrolled with the TOUCH Program (requirement of Tysabri- it's the manufacturer enrollment and monitored program) and trained in providing the medication, but their own infusion center refuses to give them any beds b/c of the priority of the oncology patients. Cancer is a horrible disease, but so is MS, and we both deserve equal access to medical treatment. Currently I am going to DC and doing the 6 hr round trip trek to get the infusions at Georgetown. Thanks to Lori and her Marriott hookup, we can spend the night affordably and make it to the 7am appts. The drug takes 4-6 months to have an effect on the MS symptoms, and that is IF it has an effect at all. We're putting all our eggs in this basket and have a good feeling about the outcome.