who here has ridden greyhound recently?

this was a question posed to my anthropology: modern africa class as our professor tried to compare one of his many experiences in an african taxicab. (he's a hard core, stereotypical anthropologist, so i take his word for it- think unkempt hair, flip flops, torn flannel shirts...) it was a pretty basic question, esp. one that most people could relate to. i mean, considering we are a sample of the average population, even further as college students who are prone to using public transportation as much as possible out of financial necessity. unfortunately, he chose the wrong target audience (from my tenure in the advertising/marketing world, i immediately recognized this as SUDDEN DEATH!), as i was the ONLY person in a class of 30+ to raise their hand.

when a single year's tuition could cover the lease on my old town alexandria apartment for almost 44 MONTHS, i'm willing to bet these kids don't even know where their local greyhound station is, let alone ridden one of their buses. (FYI- 1 year's tuition at BU is $38,134- data from the 2007/2008 academic year per reported in Forbes) good thing i'm auditing his class so our enlightened professor wouldn't be the only one forced to mingle with the masses.

now, i'm clearly not an expert on african taxicabs, but i do consider myself an expert (by default, naturally) on bus transportation, especially since this past weekend's trip to OBX would be at least the 10th time i've been a passenger. (one of their more well-dressed passengers, i will proudly point out.) in fact, i should lobby the company to issue a customer loyalty program- i could be on my way to a california road trip right now. unfortunately finding out which company to target would require a government inquiry by the dept. of transportation- is always a "surprise" to learn which bus company will be taking you to your next destination- susquehanna trailways, capitol trailways, peter pan, greyhound... the name on your ticket means absolutely nothing, trust me.)

let me offer a few pointers to those of you who might be greyhound virgins. (please note: from here on out, all bus companies will be referred to as greyhound since apparently they can double as any other company if need be. if you ever find out the logic behind this, please let me know.)

you must have a destination ticket on any luggage being stowed underneath the bus. this is amusing for more than one reason. first of all, customer service is a foreign language on these ventures- you will be the one stowing your suitcase at the beginning of your trip, and struggling in vain, praying it hasn't been stolen, as you retrieve it at the end of your trip. so why again do you have to have a destination ticket if it NEVER LEAVES YOUR HANDS?! secondly, if you purchase your ticket on the bus, or at a satellite location (i.e.- the market deli on market st. in lewisburg, where i purchase all my bus tickets), they only give you carbon copies of your ticket. if you present these at your bus transfers, you will be told to go into the bus station and get a baggage slip at the ticket counter. the women at the ticket counter will ignore you for at least 8 minutes while they finish eating their sticky buns or discuss why their boss can't tell them they've taken too many smoke breaks, before telling you that they cannot issue baggage slips for tickets purchased at other locations. during this time you will be praying to god (and anyone else that will listen) that the bus driver hasn't forgotten he sent you inside before beeping his horn 2 times and exiting the parking lot- complete with your "unofficial" baggage.

you may not bring cell phones on certain buses, or your ringer must be turned off on certain buses, or you may not talk on your cell phone on certain buses. usually there is no visible signage officially posting this policy, however i once saw a misspelled flyer posted in script on the back of a bus ticket taped behind the driver's seat. so perhaps they are in transition. however, this does not mean your bus driver's cell phone is banned. if anything, he is encouraged to use his phone- which he does quite frequently, especially to other drivers out on the road. they discuss everything from the weather, the traffic, swapping shifts, or most recently, to unveil that they have joined a rock band and are playing gigs a couple hours away. (i can only imagine the joints where this dude played- he was at least 70 and clearly didn't believe in self maintenance. think jerry garcia driving a bus.) i'm pretty sure that using ear pieces are becoming law all across the country, with stiff fines if you are caught on your phone without one- not to mention when you are driving a TWO TON BUS with PAID PASSENGERS ON BOARD. but apparently greyhound hasn't gotten the message. (and trust me, these guys never earned standout points for multi tasking.)

the first row of seats is reserved for those riders with disabilities, unless the bus drivers personal belongings are occupying said space. if this is the case, tough luck. also, if you are a passenger with disabilities, you are required to give the bus company 48 hours notice. why, i am not completely sure. if you need assistance, you have better luck asking the semi sober guy behind you for help with your bags. even when i was using a cane (HELLO! I EVEN HAVE PROPS- I AM TOTALLY LEGIT!- the driver stood outside the door deadpan, tearing tickets stone faced, while i struggled to mount the stairs.)

you do not need a valid ID (or any ID), a 2 hour advance arrival prior to your departure, or worry about your nail file passing through the unsmiling security stations, to board your intended bus. (you should however, ask at least 3 people their destination to confirm you are on the right bus- the drivers will not announce "welcome to bus 427 bound for harrisburg, pa!" in a falsely cheery voice before departure. i think the microphone is there for effect.) all you need to do is arrive 5-10 minutes before departure (and i do mean departure time- there is no such thing as "boarding time" on buses) to secure your place in the ridiculously configured, nowhere near straight line by the door. and feel free to bring anything from a loaded firearm, various knives, body bags, or liquids over 4 ounces. (or, if you're me, your latest stash of gluten free overpriced items from whole foods.)

to avoid contact with any degenerates or sketchy chatty people, wear your headphones at all times, keep an open book or magazine on your lap, and make sure your carry on is placed on the empty seat beside you. make sure a friend knows that you are embarking on a bus journey, and approximately what time you are scheduled to arrive at your destination- preferably talk to this friend as you board the bus and the moment you near your exit. doing so in earshot of any degenerates or sketchy chatty people will ensure they will not repeatedly ask you the time, if you are carrying any spare batteries or more importantly, if you are going to visit your boyfriend, during the duration of your trip. the answer to which of course is no, no, and yes- always. (as far as being on time, i have only had 1 incident when my bus was late or had any major malfunction, which is WAY more than i can say for any of the major airlines i have flown with over the past few years.)

i look forward to the day when i can compare african taxicabs to greyhound- until then, i'll be wishing i was flagging a cab in tanzania every time i prepare for my next trip to DC.

remember, you can view these postings directly on kitkat chat's blog
http://meggerv2.blogspot.com/

rejection rocks

August 4, 2008

Dear Dr. INT1,

Thank you for your interest in the Undiagnosed Diseases Program (UDP) at the National Institutes of Health (NIH). We appreciate the opportunity to review the medical history of Meg Morgensen. However, after careful consideration, it was decided by the medical review board that we would not be able to invite your patient to participate in our program. However, we did arrange to have your patient evaluated at the NIH 7/10/08 by the National Institute of Neurological Disorders and Stroke.

Thank you for considering this opportunity to consult with the NIH on your patient. We appreciate your commitment to providing the best possible care for your patients in ways that help advance medical knowledge and discovery.

Sincerely,

Director, Undiagnosed Diseases Program

it's official- i have been rejected by NIH. while i am disappointed, part of me isn't all that surprised. i had long ago fallen into this "no mans land" of a crevice- one that is wedged between a pointy jagged rock and an indestructible piece of concrete wall- i have diagnosed MS with symptoms that exceed the "typical" profile of manifestations (like that medical lingo? impressive, i know) and diagnosed Fibromyalgia that is more extreme than "typical" cases. "typical" is a word i have become quite familiar with and offered up on a silver, unattainable platter many times over the years- its usage usually comes in a form such as this: "the thing is, isn't something we typically see in MS patients." (when i am feeling particularly bitter, i believe this is actually a cover up code for "we have no idea how to help you with this so we're going to play the ignorance card and deny any responsibility.")

and regarding said evaluation from NINDS (see government specimen posting), the results have been delayed- shockingly atypical for any type of health care related promise. sarcasm alert! sarcasm alert! dr. NINDS1 assured me at the end of my exam/visit/testing extravaganza that his final notes and recommendations would come no later than the following week- which was well over a MONTH ago. i did receive a message from him on my voice mail (yes, i have begun to check them more regularly- am trying to implement that new years resolution from 2005. better late than never!) a couple weeks ago, letting me know that he would be putting together some "recommendations" that should help alleviate some of my pain issues- another shoddy attempt at stalling. but perhaps that is merely my bitterness making a guest appearance.

so what is next dear readers? i'm certainly not holding my breath for any breakthrough suggestions dr. NINDS1 may offer up in his bare bones evaulation that may or may not ever arrive. i have however realized one of my best weapons in this ongoing battle lies in educating myself as much as possible. i think my brain is over saturated with MS knowledge, so i've decided to concentrate my studies on the fibro aspect.

during the local libary's annual book sale event this summer, we picked up a book on CFS (chronic fatigue syndrome) and fibromyalgia by mary shomon (living well with chronic fatigue syndrome and fibromyalgia: what your doctor doesn't tell you... that you need to know). after reading her introduction, i was hooked, for she seemed to be describing my descent into hell that occurred in 2005/2006. it was eerily fascinating how similar our demise played out (and continues to evolve) and the book has been amazingly accurate in chronicling conditions' manifestations as well as controversial viewpoints from various practitioners.

the book is peppered with quotes from sufferers of these conditions, and one of the comments really hit home for me. a woman, joyce, addresses the frustration of suffering from an invisible and hard to understand disease, and makes a comparison that, although extreme, is dead on.

"it is a conundrum. i give mixed signals to others... ask how i am. if i say "good, fine" with a cheerful voice, they then make the assumption that i am better, and say "so you are better, you are over it?" then i say no, that it's the same. and i wonder, do they think it odd or wrong for me to say fine? can a quad in a wheelchair say she is fine? of course she can, and no one expects her to get up from her wheelchair. when i say i am fine, i only have to explain more, and the next question, "so they haven't figured out what it is yet?" as though if they had, would i be better? who ever gets better from a chronic disabling condition? people get worse or at best stabilize over time."

government specimen

NIH Launches Undiagnosed Diseases Program Clinical Researchers to Tackle the Most Puzzling Medical Cases

“A small number of patients suffer from symptoms that do not correspond to known conditions, making their care and treatment extraordinarily difficult."

"...answers to patients with mysterious conditions that have long eluded diagnosis..."

"The goal of NIH’s Undiagnosed Diseases Program is two-pronged: to improve disease management for individual patients and to advance medical knowledge in general.”

these quotes are from a press release earlier this summer, announcing NIH's plan to launch a trans-NIH initiative that will focus on the "most puzzling medical cases" referred by physicians across the nation. sounds pretty glamorous right? just think, my name could be misspelled in an 8 point font bured in footnotes of a medical journal 10 years from now. my my, i can almost taste the sweet juices of glory.

how did my 5 minutes of fame begin? what a good question, let me explain. when i was first diagnosed in 2004, it was through some anonymous doctor who i had stumbled upon via referral after referral. i was so shocked (and numb) from his findings, that my family pushed for a second (and third, and fourth, and so on) consult, which is how i wound up at NIH the first time. when the head doctor in the neuroimmunology dept. concurred with the original diagnosis of MS, the team asked if i would be willing to participate in a current clinical study on the disease progression in newly diagnosed patients. out of respect for the agency, and how quickly and seriously they took my case, i agreed to take part.

i have had many people ask me "what is NIH?"- a question that surprises me, given the agency's reputation and stature in our country's health care system and research findings. NIH stands for the "national institutes of health", located in bethesda, MD, and is the leading figure in ground breaking research and medical breathroughs. basically, it's pretty damn important, and a consult there is one of the best you will ever receive. the other part that always impresses me about NIH is the professionalism that you encounter during your dealings with the agency- the doctors and nurses are compassionate, respectful and considerate of your time, and each others (which is a shock).

i'll explain what i mean by that... part of my exam included a fresh round of MRIs. when dr. NIH1 was speaking with me after my physical exam, he kept looking at his watch and was very conscious of the time- he said (and i quote), "i don't want to hold you up for your MRI appointment- if we're late it will push them behind the rest of the day." i was shocked (and it made me respect him even more, as it showed he had empathy and shared a mutual respect for his coworkers.) also, you do not have to pay for your visit/consult- technically, you are part of their research, and you are assisting THEM in acquiring their information and fulfilling the project they are currently working for. so for a visit like the one last thursday, which included a physical, various coordination/cognitive tests, MRI scans, bloodwork, among others- the tab would have come in in the thousands. but i will never see one single bill.

my experience with NIH 4 years ago was blurry to me. i remember the endless metro rides (and the lovely orange to red line changes), the looooong walk from the station to the clinic entrance (oh god, i just remembered those steep, endless steps!), the kind nurses and comfortable MRI waiting area- but that time period is marred with some emotional trauma that had enveloped me. there was dealing with the diagnosis, going through an extremely difficult breakup, a close friendship and friendship deteriorating beyond my control- sometimes when i would arrive there, in the calm and tidy exam room, i would lay my head against the cool window glass until one of the doctors or nurses entered the room, finally letting the tears flow that i worked so desparately to keep in during all of that turmoil.

but my experience with medical care since has changed quite dramatically. normally, mom and/or dad would have demanded accompanying me to the appointment, and it was a bit of relief when i was able to talk them into me going on the trip solo. it's not that i didn't want their company, but it was unnecessary to sacrifice even more in their life than they have with me- and it is an exam that i have gone through many, many times before. not to mention that dad started his radiation that week, and was already juggling a busy schedule.

i had a few lingering concerns about the transportation though, mostly ones that centered on logistics. taking the metro from kate's apt would have required a walk to the station (that alone would have been impossible, even with a 2 hour start!!), switching trains to a different line, spending close to an hour on the metro, having to walk the 1/2 mile or so to the clinic entrance... not to mention that i had never seen this new doctor before and wasn't sure how he felt about the chronic pain and fibromyalgia correlation to MS (a constant battle or more appropriately speaking, a game of "keep away" from physician to physician).

i pondered who would be available that day who could accompany me- the short answer was no one, since my friends have jobs, careers, families. also, i wanted someone that would be able to play the "bad guy", who would defend me in front of the accusing or disbelieving doctor. the first idea that popped in my head was lori- she's a tough chick, and would have my back in an instant. plus, she has seen me at my worst before, and already knows how tired and run down i get after intensive activities. (also she won't let me get away with my "appearance facade"- as in, she'll force me to use the wheelchair escort, etc.)

so lori picked me up that thursday morning, punctual as always, with a whole BAG full of gluten free pastries from whole foods (ahhh, she knows the way to my heart!) i tore into a poppyseed muffin, but as we got closer, lori became more and more paranoid they would run my bloodwork and the poppyseed recipe would manifest itself as opiates. of course i was ravishing, and beyond caring at that point- positive drug testing or not, i was eating the rest of that muffin! thankfully, she became distracted when we arrived at the entrance and faced an intimidating security screening. as in, we had to get out of the cars while they were searching by unsmiling govt employees as we walked back and forth through metal detectors. it sounds simple i know, but i felt like i was going to be sent to abu ghraib at any second!!!

eventually lori confessed my poppyseed muffin breakfast to the nurse as the vampires were filling endless tubes with my blood. the nurse laughed at lori's paranoia and said that they were mainly checking for pregnancy since they needed a number of MRIs later that morning. (last she heard poppyseed muffins don't cause pregnancy. good to know, right?! hah.) they put me through the usual 6 hour regime of basic physical, bloodwork, MRIs, cognition, coordination skills, walking, oral history... i'm used to most of the tests except for the cognition element that was used. i have not taken those type of tests since the nueropsych exam i went through for my long term disability paperwork in VA. here's how it breaks down:

you will hear a series of numbers, with 5 seconds between each one. you are to add the first two numbers together, tell the nurse the sum, then return back to the number sequence and add the second and third numbers together, giving that sum to the nurse, and so on, and so on. for example, 5..... 3..... 2..... 6..... you would tell the nurse 8, then return and say 5 then 8, and so on. this goes on for approx. 100 seconds, and it was the longest 100 seconds of my ENTIRE LIFE. i failed that exam MISERABLY, and i'm not just saying that. lori sat in on everything (except the MRIs, as she would have caught some horrendous radiation-caused disease), including this cognition part, and the nurse offered to give her the "cheat sheet". i was relieved when she declined the offer, as i was already feeling like a complete dumbass, and i needed someone else to do horribly on the "test" as well. i wanted to scream "WHY IS EVERYONE AGAINST ME?!?!" but i thought better of having a public crazy moment. (since i'm sure NIH has a psych ward. hah!)

the physician who is heading up that dept now was a calm, compassionate, and understsanding older gentleman, so lori's battle armour wasn't even necessary! turns out he used to run a private practice with the majority of his patients having MS and/or chronic pain, so i felt right at ease as i explained some of my most recent, and most challenging, problems. what would happen next is that he presents my case at their weekly dept. meeting, and my summary/recommended next steps will be a compilation of 5 different doctors (that's a plus!). we didn't talk much about the specific study i mentioned above, as i think that is a very long time down the road. the nurse told us that i would hear something in one week (which was last week, but you know how doctors can be w/ time approximations!) and if i am asked back to do more tests and more in depth studies, it will be up to me at that time.

here's how i feel about that: they (NIH) have dedicated a great deal of time and money to my case, which i am extremely appreciative of. if they would like to run more studies and tests, i am a willing subject. if anything, i'd love to give them more research to help specialized cases like mine, so that in the future, others would not have to suffer like i have. it would be the greatest feeling to know that i contributed to that in a small way.

when we were finally "released", lori picked up some delicious corner bakery salads (she claimed there was a "buy 1 get one free sale"- a phrase she tried to con me w/ more than once during my stay!!) and i went through the motions of eating, but all i could think about was how exhausted i was. after she left, i passed out completely, only awaking when i realized i was about to sleep through lori & paul's offer to dine at my favorite rosslyn eatery, guajillo. the rest of the weekend went by in a blur- i was incredibly run down, attacked by a vicious migraine, and extremely sensitive to the ridiculously right DC sun. but as usual, my amazing friends pulled through. julie gathered some former coworkers together for some sparkling vinho verde on friday night, then candy hosted me at her recently redecorated studio at our old stomping grounds (the port royal) for an afternoon of sex in the city & junk food (and a newsbrief on old neighbors and "hotel california" gossip).

remodeled bedroom area @ candy's place; frank & candy watching SATC; lori, nicole, julie, lara & i (& june, nic's dog)

but the trip didn't ened there! nicole & joel surprised me with a massage from joel's sister on saturday afternoon, which was the BEST treatment i have ever received. for an hour, i was able to escape the physical pain and mental exhaustion of thursday while she managed to revive many of my muscles that had formerly been on strike. her fingers were SO DAMN STRONG, and she was completely professional. you know those people who were put on this earth to do (no, excel) at something? she's one of them. i feel so strongly about this that i have to share her information here- her practice is in georgetown and you will NOT regret booking an appt, i promise!!:

Juliane Sommer (LMT- Therapeutic Massage)
1010 Wisconsin Ave, NW- Suite 345
Washington, DC 20007
202.333.2494 (by appt.)

for now, i'll try to wait patiently (i was never good @ that!!!), and hope that the brilliant geniuses over in bethesda can make some sense out of my complicated medical situation. cheers!

remember, you can view these postings directly on kitkat chat's blog

http://meggerv2.blogspot.com/

"the family - that dear octopus from whose tentacles we never quite escape,

nor, in our inmost hearts, ever quite wish to."

(dodie smith)

we've been going-going-going at breakneck speed since our plane landed on thursday afternoon at san jose airport- rehearsal dinner on thursday night, ben & kristen's wedding and reception at testarossa vineyards (which btw, served a house chardonnay... insert drumroll... and i actually LIKED it! and i wasn't faking it either!) the birth of a new Morgensen (alexander kai), a morning-after brunch at the new in-laws (where apparently my aunt diane and cousin ben went in the pool completely clothed- and without force), a cookout at the rudy's, the infamous fish slideshow by uncle joe, fishing at half moon bay... and we're only 4 days into our visit!! i can't claim attendance at all the events, as i couldn't even bribe myself into making the morning after brunch or this afternoon's fishing expedition (although they didn't catch a damn thing- unless an innocent little starfish counts, the poor thing.)

but me? well, i spent the day recovering, huddled under the covers with ben-gay pain patches slapped across various parts of my body, downing pain pill after pain pill. it's official, i admit it- i had overdone it. but how often do i get to see this side of the family? not very much. and besides, we are here 9 days- i'm going to overdo it at LEAST once. i talked my own self off the ledge with this rationale, and the more times i repeated it, the less i felt guilty and isolated from the elusive good time that everyone else must have been having.

there have been some new stories etched in our family history over the past few days. a perfect opening example featured one of the unpredictable (aka under the age of 5) new Morgensen stars at the outdoor ceremony of my cousin ben & kristen's wedding friday night. as ben was reciting the vows that the officiator had been feeding him... i, ben ("i, ben")... take you, kristen ("take you kristen") as my--- but just everyone was getting appropriately teary eyed in expectation, out of "you could hear a pin drop" silence, a high-pitched squeal adamantly interrupted the peaceful moment. "NO BEN! DON'T SAY THAT!!!!!" i turned around to see little tuxedo-clad joey (my cousin autumn's 3~ish year old son) on his knees, his knuckles gripping the back of the folding chair and a look of pure fear on his face. priceless, completely priceless- thank god we caught THAT one on tape!

sunday afternoon, some family friends of my aunt & uncle invited the WHOLE Morgensen clan (well, at least the ones who were outstaying their welcome, us included) over for swimming and bbq'ing. it was your stereotypical california moment- the weather was perfect with a clear blue sky, dotted by puffs of white clouds, the sun was just warm enough (and of course no humidity), the soft green grass was cut close and perfectly even, and the backyard was bordered by lime, grapefruit and lemon trees. (i admit it, i asked if they were real. but seriously, we don't see that back home!! we get our fruit from walmart or whole foods!)

with adorable nathan and joey (again, autumn's boys) screeching with glee and hilariously jumping on my poor brother (who towers over them at 6'5"), i couldn't resist jumping into the fun. ok, so i didn't exactly jump, but i did strip down to my swim suit (one which hadn't seen the light of day since it was bought 2 years ago!) and waded into the water. and it being that perfect CA movie stereotype, the water was a perfectly comfortable and soothing 83-degrees. within seconds of getting in the pool, i felt like my old self- i could swim, and walk, and even pull the kids around with me. it was one of those moments you wish you could sear into your memory. i kept shouting to my parents like an 8 year old- "dad, dad, dad! look at me! mom, look!!" i was so proud of myself, i kept swimming back and forth, across and back, toting nathan to and from the deep end, and playing keep away with the beach ball (which turned into a game of hurling the ball at my brother's head repeatedly.)

another hilarious "insider family" joke example was my cousin jenny's decision to get into the pool in her 2 piece bathing suit. let's put it this way- she has some "decoration" down her right side that isn't exactly G-rated. in fact, i think it might be R-rated (is nudity allowed in PG-13?). i had promised her i'd divert attention if she came out of the water suddenly, or her bikini straps revealed a portion of the design, but instead i found the whole situation hysterically funny, and was NO help in being lookout. besides, the boys were clinging to her like baby monkeys and were more concerned with being dunked into the deep end than to judge her "accessories."

last night, i awoke with some searing pain in my face (damn pesky TN!) and found myself debating the pros and cons of going downstairs to find some frozen veggies that would double as an ice pack. pro- i might actually get a few hours of sleep if i could numb my cheeks. con- i could trip and fall over the balcony, landing on the first floor with a broken back (i've been having spells of intense vertigo- the floor literally looks slanted, at a 45-degree angle.) i finally decided that risking death was worth some relief from the stabbing pain in my jaw, and hugged the wall as i approached the stairs.

i paused in confusion, for it sounded like someone was vacuuming... whoooooooooooooooosh. but who in the hell would vacuum at 2 in the morning, so the likelihood was slim. another sound was attempting to harmonize with the vacuum, but this one was a high-pitched train screeeeeeeeech- like the one you hear when Amtrak brakes at the upcoming station. turns out these sounds were in fact "snores", and they were coming from not ONLY my father, but his BROTHER as well- one from the left side of the house, the other from the right. between the two of them, they had the entire house shaking with their breathing irregularities. thank god that trait wasn't passed down to me, or any future relationships would be quite brief.

allow me a small departure from anecdotes to some deeper thoughts. i feel strongly that there is something innately and uniquely comfortable about family. now, before you get all riled up about this, i will state for the record that i, of all people, understand the drama that can come with family gatherings, or just family in general- the historic squabbles among adult siblings, decade-old grudges from ancient disagreements, personality "quirks" or eccentricities that bring out the worst sides to your own character, bitterness over unpaid debts, secret successes and failures, underlying tension and awkwardness that permeates certain stretches of conversation.

but the comfort comes into the picture from moments like the ones i shared above. it's evident when you're welcomed with arms outstretched by family members you haven't seen in 4 or 5 years, and even some you've never met before. these are people that have heard the same stories, have shared the same experiences, who have laughed over the same memories- they're part of your very own piece of history, a reminder that you're part of something bigger than yourself. those thoughts alone are comforting, and their presence itself is priceless.

i never grew up around an endless number of relatives at sunday dinners, ballet recitals, awards programs, birthday parties, graduation, prom dress shopping, church services... i have always been (and still am) quite jealous of those of you that have grown up in such an environment. any of these would have required nothing less than a private jet to criss cross around the country gathering and depositing grandparents, cousins, aunts, and uncles to states as far west as california and as far north as illinois. it was a special (and rare) occasion to have family around for thanksgiving or christmas traditions.

so that sense of special occasion when everyone is together is one that i continue to carry with me into adulthood, and our current trip to california is nothing less. during this trip, i have found myself at a crossroads of where i "fit" into our extended (and ever-growing) family tree. when you are a kid, your cousins and yourself are usually the center of attention at family gatherings- especially when the grandparents alive, it's like the circle of history is continuing on with the passage of time.

but as we've gotten older, our family has expanded into second cousins, grandkids that have been replaced by the new generation, great aunts, uncles that have transitioned into grandparents... for me, it was a strange transition at first. my "place" as a grandkid had been erased, so where did i fit in? but watching my cousins' children grow into these little talking, walking, hilarious people brings a whole new element into this thing we call family. it again proves hat we are part of something bigger than ourself, and that no matter how different we may be from one another, we will always have a place in which to belong.

remember, you can view these postings directly on kitkat chat's blog

http://meggerv2.blogspot.com/

newest addition to the Morgensen clan!

alexander kai morgensen

born friday, june 27 @ 10:27pm

approx. 7 lbs, 20"

son of sean & tricia morgensen

grandson of marilyn morgensen, and david & patty morgensen

nephew of jenny morgensen

cousin of autumn, ben#2, ben#1, kristen, meg, mike, nathan & joey

grandnephew of joe, diane, tom & jean morgensen

(great grandson of the late fran & peter morgensen)

actually, there are TWO new Morgensen's to celebrate, but b/c i didn't bring my flash card reader, we only have pics of ONE of the newbies. i will blog about the wedding celebration more effectively once i have some pictures to share. it is now the "morning after" the big affair in downtown los gatos last night, where yet another blushing young bride was officially inducted into the Morgensen hall of fame (what a lucky gal!)

but two Morgensen's (my cousin sean and his wife tricia) were noticeably absent from last night's festivities. on their way to los gatos from their home in Sacramento, tricia began having contractions (approx 4pm). in a typical male fashion, my cousin merely pulled over to the side of the road and "assured" us all that they were simply false contractions and they'd just be a little late to the ceremony. (of course, all of the women in the family were in the background screaming "TURN AROUND! GO BACK HOME!" hahahah.) well, thankfully they DID decide to return home, and during their return trip they realized these were the real deal contractions, so quickly changed their directions to drive straight to the hospital.

only a few hours later, at 10:27pm, little Alexander Kai Morgensen came into the world to a stunned father, an estatic mother, and screaming relatives on the other end of the phone (you could probably hear the shouts of excitement all the way to sacremento from uncle dave's house in scotts valley!) a massive game of phone tag and photo forwarding immediately launched into gear, as no one expected the baby to come THIS soon (tricia was due july 4th and had been to the doctor on wednesday for a check up, to get the clearance to make the trip down for the wedding)- the required contingency of relatives had yet to even make it to sacramento to join sean in his "baby watch: 2008" mission.

mom, dad and i are staying with the newly annointed "grandparents" (uncle dave & aunt patty) and "auntie" (jenny, my cousin) so the celebration quickly shifted gears from wedding to birth in just a short car ride home from the vineyard. we had all donned our pajamas and were saying our goodnights when we heard aunt patty screaming from the tv room- big news had broken! uncle dave broke open the liquor cabinet (if we had planned better we could have grabbed a bottle of champagne from the reception!) and passed around shots of bailey's (i abstained, but we introduced mom to the deliciousness of the beverage) while "ooooo-ing" and "ahhhh-ing" over the 1/2" blurry photo that came through to jen's mobile.

so it's my immense pleasure to introduce to you my newest little cousin, Alexander Kai - approx. 7 lbs. and 20" of pure Morgensen royal blood. grandma and grandpa would have been so happy that the whole family is together for both of these occasions- i wouldn't be suprised if they somehow orchestrating the timing.

*ps-consider this a fair warning kiddo: you're going to have QUITE the grandpa! (hee hee- i just called uncle dave a grandpa!) not to mention some loud, funny, rambunctious, TALL, relatives... and quite good lookin', if i say so myself ;)

"May I exchange this rusty old armor for a pair of Spanx, please?"

“wow, your hair looks fantastic today- did you do something different with it?” i received this (flattering) compliment 3 times today by my doctor, nurse, and friend at the bank. i was at a loss for words at the time, so blurted out the truth, which is “oh, thanks! i washed it!” so I’m thinking i should do that more often, if that’s the type of effect it’s having on people. hah!! oh, fun times…

today was my monthly checkup with Dr. INT1, which was a bit appropriate considering i feel like the tin man without any grease for his joints. recently, i have been able to ditch the cane on certain occasions (as long as it’s for a short period of time, or length of walking), so having to go back to using it consistently is a bit of a disappointment. i don’t know if it’s all the traveling, or just the usual ebb/flow of the disease, but moving just an inch takes so much effort. my pace has slowed doooooooowwwwwn to a crawl, with a bit of a hobble-shuffle move, trying not to bend my knees or ankles as much as i can get away with. i feel like i am encased in armor (very rusty armor, think 17th century), but instead of the armor creaking with strain and pain, that’s my actual joints. lovely, isn’t it?

i tend to develop favoritism for various nurses from time to time- i guess you could call it an RN crush of sorts. hah! to be honest, i know most of the nurses in the Internal Medicine and Neurology departments, and we’ve gotten to know each other well over the past year. (i should get one of those “Buy 10 Coffees, Get 1 Free” type memberships for the doctors’ offices!) But sue is one of my favorites, and today she scored major points. first, she took pity on me and my pain expression and slow hobble as we walked through the corridors, and instead of leading me to the VERY LAST ROOM (that always happens to me at doctors’ offices and movie theatres- odd combination i know) she aborted that intended mission and put me in one of the front exam rooms so i didn’t have to walk that far. then, she made the mistake of asking how i was feeling and my stress level, and consequently, got an earful in the latter category. to top it all off, she saw me curl up on the exam table (my trademark pose when i’m not feeling well- fetal position with my hands clasped together supporting my head) and came back to cover me up with a blanket. i know, she’s awesome.

a pre-med intern was working w/ Dr. INT1 today, and i gave that lucky young pup permission for him to sit in on my appointment. when he entered the room and was introduced, she told me she had given him a 2 minute synopsis of my condition, which just made me laugh out loud. that’s quite hilarious (not to mention impressive), putting 4 years, and 280 pages of medical records and testing into 2 minutes- quite the talent she must have!

so when Dr. INT1 came into the room (right as i was drifting off into a short daydream- damn that timing!) her first remark was “oh dear, I was worried this would happen.” what she was referring to is the recent (and upcoming) traveling i’ve been doing, but when i told her i actually just got back from the short trip- i hadn’t gone on the long trip yet- a look of concern flashed across her face. it was a brief look, but i saw it. (those docs, they try not to worry you!) she’s happy that i’m getting out and getting a change of environment, but she knows how much stress that puts on my weakened body and well, puts me in a state like i am now.

but she’s not the only person that has voiced their concern or objection to the upcoming trip to CA (hodges, I am talking about you!)- my mom keeps fretting, saying “oh, how how HOW are you going to do this? if i were you i would never have said i’d go in the FIRST place!” yes mother(s), i know, i know. and trust me, i’m not exempt from the concern either, i just try to hide it from everyone else that's already worrying. i look at it as an unchangeable fact- i’m going, and i’ll just have to deal with it, one way or the other. when I’m traveling, i try to be very sensitive to putting my physical restrictions on the people i’m with, so i tend to retreat into myself when i’m not feeling well, instead of complaining. (go lay down, go into another room, rest on the sofa, take a nap, etc.) first of all, i think those kinds of people are flat out annoying as hell, so i don’t ever want to be grouped with them! but secondly, this is something that isn’t going to go away! ever! i have about 60 more years (hopefully!) to learn how to live with this, and i have to start sometime. besides, i already feel like i miss out on so much… i don’t want to add yet another line to that list.

during my exam, my fingers were clutched around the sides of my cheeks, trying to release the tension that recent Trigeminal Neuralgia and Neuropathy flares have done to increase my TMJ. it’s been so painful the past few days (and while i was in NC- i would go to sleep at night with frozen vegetables wrapped in a washcloth!) that i’ve been desperate to seek some relief. we decided to start back the Tegretol to address the neuropathy, but i told her i would only take the medication if i was absolutely unable to stand it in CA (right now i’m just trying to push through it, as even additional muscle relaxers, my existing Methadone schedule, and even additional Percocet isn’t doing much in my favor). i doubt that Tegretol is going to be the magic cure, but i suppose you never know…

(we did discuss increasing my Methadone dosage, but quite honestly, i don’t think i can go through that again, especially since i’ll be out of town for the next couple weeks. the first adjustment was difficult enough- i slept through most of may!) i am taking my dear laptop with my on my upcoming trip(s) so watch out everyone, i'll be blogging from the road! (errr, make that the overpriced, baggage-charging, always late, no longer friendly skies...)

remember, you can view these postings directly on kitkat chat's blog http://meggerv2.blogspot.com/

human pincushion

it's official. i am a walking, breathing, talking, fleshy, giant pincushion- complete w/ mismatched thread colors and sporadic needle points. whoever guessed i must have just given myself the infamous daily shot is simply BRILLIANT!!! in fact, just today i was thinking that my body is holding a protest against the injections... and not exactly passive and peaceful ones, which everyone knows are how the effective protests are run. (i must not have gotten the memo.)

resistance first comes in a stinging sensation very similar to a bee sting or a sharp splinter. after a few minutes, sharp, pin pricks of pain break out around the area, almost like red ants are being held captive underneath my skin. a bright pink rash spreads out to cover a 1-2" diameter of the swollen injection location that is surprisingly itchy. once those protesters tire, small, sore lumps of flesh take shape- it feels like there is a pebble or rock underneath the skin. eventually, a longer lasting veteran appears to see it through- a lavender & teal colored bruise spanning out greedily against a backdrop of veins and pale (almost glow in the dark!) skin.

about the only thing i look forward to in this nightly ritual (other than it just being over) is the capping of the needle and watching the quantity of syringes in my fancy, state-of-the-art, sharps container multiply in number. (ok, so technically it's a recycled, plastic lysol wipes jar, but "sharps container" makes me sound quite professional.) not to mention the sheer quantity of needles makes me look totally hard core, which is a nice bonus. then again, unless you were snooping around my bathroom, you would never come across the syringe stash in the first place- and if you were snooping around my bathroom, that would just be... weird. not to mention rude.

so tonight i stood in front of the mirror, analyzing the number of battle wounds i've accumulated just this week alone... the number of out-of-sight areas are decreasing, which isn't exactly conducive to summer wardrobe attire. what i'm referring to are special "hiding places"- areas where the skin is always covered up, no matter how little clothing i happen to be wearing- i usually use a bikini or yoga attire as a measuring stick. (oooh, speaking of, that's another pet peeve of mine- yoga outfits. why are they all so tight? and skimpy? when my body is contorting in all directions the last thing i want is my flab hanging and poking out of the strappy areas in my yogi getup! ok meg, focus, you are getting off topic.)

i tend to favor my left back hip area, as this area has been numb for over a year (is that considered cheating?) unfortunately, it's becoming savvy to my sly ploy, and retaliating by developing nasty lumpy nodules that are lasting a good week or two in existence. unsatisfied with the lack of potential injection sites, and getting more stressed out by the minute (if i stall too long in giving myself the shot, the beginnings of a panic/anxiety episode can start to appear), i went with the standby, the back left thigh, regardless of its ability to peacefully tolerate recent treatments. making the preemptive grimace that involves cirque du soleil contortions of my facial muscles, i jammed the needle into the soft flesh, gritted my teeth and counted to ten. after i hit 10, i let out a sigh of relief and extract the syringe from my poor, overused thigh. great, i had hit a vein- blood was pouring out pretty steadily. i guess this wasn't going to go over well.

maybe i should open up my own psychic hotline b/c sure enough, only a few moments later the troops were rallied and a protest was underway. damn it hurt... and itched... and burned... damn, damn, damn these injections. come on john and sally york, put your fancy biomedical engineering research skills to use and create a pill i can swallow to get this medicine!!! van, marylee, emma- you're doctors, work on this in your spare time! (hah, spare time, like medical students know what that word is.) anyway, thanks for joining me for tonight's episode of "meg gives herself a shot".

until next time,
m3, your favorite medical malady bloggette

remember, you can view these postings directly on kitkat chat's blog
http://meggerv2.blogspot.com/

desperate times call for desperate measures?

my psych professor's voice keeps repeating in my head like a cassette tape that is jammed in the car stereo system (yes, i still have a tape deck in my car and i think it's retro. so there.) he shared a very relevant insight during one of the spring semester's last lectures in regards to autism (it was the week's topic) and more specifically, treatment options. an entire class was dedicated to the ever changing, mostly unproven, non-recommended, "alternative" attempts that are highly popular among the general public. while there are elements of this tendency that can be credited to lack of proper education and/or health care resources, what mostly drives people to seek such outlandish methods is out of pure desperation and fear.

he was sharing shocking, concerning stats on the increasing number of confirmed diagnoses and that the range of autism itself has actually expanded as well. for example, the waiting list for a child with suspected autism to be seen and treated in the pediatric neurodevelopment unit of GHS's children's hospital is 5 years long. (by the way, don't quote me on that, b/c my notes from that day are completely illegible- it must have been in the midst of a tremor- but i'm pretty sure my memory is accurate. it might even be longer than that, which is horrifying.) five years to get your child seen by an expert. five years for your children to get treatment recommendations. (which is ironic considering that the key to optimal outcomes for autistic children lies in early intensive intervention.) when a parent has a child that is sick- whether it is mentally, physically, spiritually- when their child is in crisis, 5 minutes can be agonizing. 5 years is completely unbearable.

so you can see how someone would be swayed by promises of relief and assistance with special diets (gluten-free, vitamin B, magnesium), hyperbaric oxygen chambers, cell therapies, antibiotic treatments, music therapy, detoxification, anti-fungal treatments, chinese medicine... the list is endless. a simple google search for "autism treatments" will yield just as much non credible information, if not more, than authentic info. so my brain makes the leap from autism to diseases that are difficult to treat in general, and i think, "oh god, is that what i have done? is my perception clouded?!"

the onslaught of flashbacks have been chasing me for the past few weeks ever since i began experimenting with NAET treatments- a specialized allergy elimination technique that was developed for the diagnosis and treatment of allergies and allergy-related health disorders. this extremely gentle, non-invasive technique was developed by a physician in california, dr. nambudripad (dr. devi, for all intensive purposes), who has been trained and certified in many, many health professions (she has a ridiculously long list of acronyms beside her name to prove it) including registered nurse, chiropractor, kinesiologist, acupuncturist, and md. but as i go through these treatments, prof. evan's voice echoes softly behind me... would this classify as an "outlandish method" in my desperate quest for relief???

this all started from a recommendation for acupuncture suggested by my neurologist nurse (RN NEURO Sharon) and internist (DR. IM1), who thought some of my pain issues and frequent migraines could benefit from acupuncture treatments- she has a couple patients who have found this beneficial. so i took the initiative and called debbie smith (again, acronym central: R.O.M., Dipl.O.M. (NCCAOM), M.A.O.M.) at feel good acupunture in danville (near GHS, where i hang out w/ my doctor peeps frequently) to get some more information.

not surprisingly, i couldn't afford the acupuncture treatments (story of my life!) to be honest, it's pretty rare for even decent, private health insurance plans to cover alternative therapies like acupuncture, so i wasn't surprised in the least to hear my shitty, state-funded health insurance would not help defray the costs involved. (note to state of pa: i'm very very very very appreciative to have the shitty health insurance though.) unfortunately, this is something i am having to address more and more as i go beyond the boundaries of western medicine to seek relief. i just pray that my SSD appeal goes through sometime this summer and i can start more frequent reiki treatments, continue w/ NAET, and begin acupuncture.

anyway, during my conversation w/ deb, many of the details of my complicated health history and what i was looking for in a treatment came to the surface, so when i had to decline the acupuncture treatment, deb suggested NAET treatment, which is less expensive and not as time-sensitive as acupuncture (ie- it would not have an effect on the quality or longevity of the treatment if i came every week or every 4 weeks- the only downside is that obviously the whole process would just take longer). i was immediately intrigued b/c of the ever-increasing problems i have developed with various food groups/types over the past years. for example, two years ago, i was able to identify that many of my chronic GI troubles stemmed from a sensitivity to gluten, causing me to radically change my daily diet and entire outlook on food. a year later, we realized i was lactose intolerant (after DR. IM3 had steadily increased my activia yogurt intake to 3 per day to help address my digestive problems- gee, i wonder why i was getting sicker?!)

deb explained that she would not be surprised if i had very high sensitivity to many food and environmental allergens based on my health deficiencies, and that the treatments might be able to offer me some relief i haven't found elsewhere in regards to both GI discomfort and overall pain and sensitivity. you see, a "normal" immune system (ie not mine), when facing contact with an offending agent, will immediately release chemical mediators to counteract the allergic reaction. but in a weak immune system, the body perceives what would normally be chemically mediated harmless substances into evil, dangerous, and threatening intruders, which in turn stimulates a massive production of antibodies to defend the body. from there, it snowballs into major disaster mode- things don't settle down as quietly and seamlessly as they would in a healthy immune system and the beginning of an allergic reaction has begun. (it is the same theory of someone w/ a weakened immune system being more susceptible to picking up a cold, or other infection.)

i'm big on instant "clicks" with people- from friendships to dating to consumer services, including health related services and my spats w/ verizon wireless. and trust me, i've had lots of experience with both of those- esp. verizon. oh just the thought of those greedy, misleading, unreasonable jerks makes me grimace. but i immediately liked and trusted deb- she is incredibly easy to talk to, not forceful or pushy, extremely informative, and really passionate about her job/practice. it comes across in every aspect of her practice. also, she actually studied under dr. devi, and was a patient of the NAET treatment itself before becoming a practitioner. (i have to admit, there was a rush of relief to realize she wasn't one of those hippie, wacko, mystic healers!

this is the part where i'm going to make an attempt explaining dr. devi's theory on allergens and their relationship to health problems, and the technique (NAET) used in to eliminate such toxins in your body. i emphasize the word "attempt" because this is one of those things where the more you read and learn, the more you are able to understand. one thing that really struck me was the difference between the philosophies of western medicine vs. alternative medicines (or chinese medicine, or homeopathic medicine, or acupuncture, etc.) in regards to allergies.

there is no known successful method of treatment for food allergies using western medicine except avoidance (and we all know that is just another word for a pain in the ass, frustration, and deprivation)! when your body is allergic to a food, it is not able to absorb the vital nutrients from the food b/c it is so busy fighting off the offending substance- this leaves your body without the intended nutrients it may need to function properly and efficiently.
NAET is a blend of testing and treatment procedures from acupuncture/acupressure, allopathy, chiropractic, nutritional, and kinesiological disciplines. at the core, it is based on oriental medicine's principles, which is based on the ideal, yin-yang state of the perfect balance of energies. any imbalance in that state will cause an energy difference which in turn, is an allergy.

what NAET seeks to do is desensitize your body to the offending allergen so that it is no longer perceived as a threat, and in its place, imprints a new, neutral memory. from that point on, substance would be able to travel through all the energy channels of the body w/out encountering blockages. if you look into this practice more in depth, you'll start to see that virtually anything and everything in the world could be perceived as an allergen (even emotions and inanimate objects), so it's up to the relationship between the practitioner and the patient to narrow the treatment plan enough so that the most offending allergens are isolated.

this involved a dive into the very deep pool of meg's medical history, and the current challenges i'm dealing with. from this, deb was able to compile a basic group of 16 possible allergens to test and consequently treat me for. not surprisingly, i registered a very high sensitivity for all 16 (and then some- we even tested for some odd ones, including fluorescent lighting, lunar radiation and rage. yep, all came back positive! there goes my dreams of moon walking!) each treatment is done one at a time. so far, i have been treated for, and cleared of, BFF and egg mixture, and was most recently treated for calcium mixture.

another interesting aspect of this treatment is that it requires my mom to be a surrogate (no, she's not giving birth to an allergen free robot). basically, she is the conduit for the allergy treatments, and by skin to skin contact, passes the treatment on to me. i have to say, she has been an extremely good sport, even though i KNOW she was struggling to keep a straight face, especially that first day! the reason she has to act as a surrogate is because of the method used to test and treat the offending allergens.

this method is called muscle response testing (MRT) and here's how it works: while holding a test tube vial containing the suspected allergen in their fist (their fist should be balled around the tube to "protect" the allergen- you want to ensure that nothing from the environment leaks in and interferes with the reading, such as the paper lining the exam table or the rubber handles on the side of the cushions) and is asked to extend their arm. the practitioner gently pushes down on the patient's extended arm while the patient is asked to consciously resist the downward pressure.

if the patient's arm maintains a strong resistance to the pressure, they are not allergic to the specific material. on the other hand, if their arm momentarily goes weak during this downward pressure, they are sensitive to the allergen. you might be wondering, why is meg's mom needed in this scenario if it's for meg's allergy? well, because of my MS-related weakness and pain in my extremities, it is highly likely that i would give false positives for this test. but as long as i maintain skin to skin contact during the testing, it is actually MY sensitivity that is being tested (similarly, if i maintain skin to skin contact during the treatment, i will be the end recipient of the treatment.)

random shout-out: the surrogate does not have to be consistent- any person can serve as the surrogate during a particular treatment session. so if you're lucky enough to visit on a monday afternoon, looks like you're in for a treat! ;) i'm thinking lori will def be game for this... did you notice lori lilac??

now, i know there are lots of you out there that are thinking this MRT system is a total joke. that's ok, i was skeptical too. it DOES seem too simple to be true! but here is what's happening in your body... in those short seconds or minutes, your nervous system is being tested. if it is irritated, even for one second, it will cause a temporary blip in the system which makes your arm go weak. ANY irritation to the nervous system will do this- even an uncomfortable thought or terrifying emotion!

one of the coolest things the MRT system can do (at least in my opinion) is to actually ask your body "yes" or "no" questions regarding your physical health- this will ultimately reveal information about troubled areas in your body that require attention. isn't that awesome?!?!? for example, before we began any treatment, deb asks my body for permission to treat the specific allergen. and she's hard core about it- if the arm is showing weak resistance, she asks a few more times, but if the answer is still "NO", or even a shaky "yes", she doesn't proceed w/ the treatment. this is b/c your body is trying to tell you something, and it's important to listen.

after the MRT testing, the treatment procedure can begin. first, the central nervous system is mildly stimulated using acupressure around the spine (this stimulates the nerves that carry messages to/from the brain to other organs and tissues within the body) while in the presence of each allergen (the patient or surrogate is still holding their fist tight around the vial). this is how/where the brain is reprogrammed with the new, harmless message. for the following 26 hours, it is important to keep the body's energy pathways clear and facilitate the new/reprogrammed allergen through all the appropriate channels.

to help with this process, the patient uses a small, pen-like massager (yes, it looks like a vibrator, i had to put my hand over my mouth to keep from laughing at loud when deb first pulled it out) on 10 acupressure points along these meridians. you hold the massager on each point for 15 seconds, and this is done every 2 hours (or more frequently, if you can remember). during the 26 hours, all contact with the offending allergy is to be avoided. for example when i was treated for egg mixture, i couldn't even TOUCH down comforters, or anything that had chicken feathers, or even a tupperwear container that held chicken from last night's dinner. this part is EXTREMELY important and is the only major hassle w/ this technique. end result is that after 26 hours, the patient should be "cleared" of the allergy to the particular allergen. (if you are particularly sensitive to an allergen, like i am with sugar, it may take more than 1 treatment to "clear" me of this allergy. it just depends on your body.)

after my initial consult, deb was very up front with me. she explained that this was not going to be a magic cure, and that it was probably going to be a very long road. she suspected (and turned out to be right) that my allergies were going to be numerous, and would most likely need to be repeated more than once before they were cleared, and/or i noticed any change or benefit. i was thankful for her candor, and as i have read more about this treatment, and read further into dr. devi's teachings, i am appreciative of her honesty from the very beginning.

to supplement my NAET treatment, i am reading "say goodbye to illness", one of many books written by dr. devi. the book has proven to be an invaluable resource and also incredibly interesting- i would encourage any of you who might be interested in this treatment to find a copy online. in the preface, she explains,"when you are chemically and environmentally allergic to almost everything around you, it usually takes 2-3 years of continuous treatments w/ NAET before you can begin to come out of the bubble and into the real world..." however, this realization doesn't damper my belief in this technique, nor does it chip away at my faith that relief will come at its own time and own way. the main reason that dr. devi was led to research and pursue a career in this field came from a childhood of persistent and debilitating food allergies.

at another section in the book she makes a comment that very deeply resonates with me. "... until then, i was under the impression that everybody was supposed to experience a certain about of body aches and pains all the time, because i had never known otherwise..." during this week's calcium NAET treatment, deb was talking about all these symptoms that are not natural accomplices with eating- cramping, extreme fatigue, naseau, general discomfort, severe bloating. to be honest, i had never given it a second thought. part of me thought everyone felt this way after eating. i can't remember or name a food that has NOT brought on any of these (or all of these) conditions. it's my norm. i didn't really realize that this never crosses the minds of most people!! isn't it is amazing how quickly (or how much) our bodies will adapt to circumstance and situations. i can't remember what it is like to wake up in the morning and be able to put my feet on the floor without wincing in pain, without feeling the sharp, shooting pinpricks and stabbing pain that comes with the movement. i have forgotten what it was like to just... wake up.

"it is your HUMAN RIGHT to: eat whatever you want, live in whatever environment you want to live in, wear whatever clothes or cosmetics you want to wear, live or associate with whomever you want to, and be happy." this is how dr. devi starts chapter 1 in "goodbye to illness". you know, this can be quite easy to forget. i just assumed i was exempt from such ideals. i am constantly being forced to modify my lifestyle, my diet, my way of life... such a statement had not crossed my radar in.... years.

remember, you can view these postings directly on kitkat chat's blog

http://meggerv2.blogspot.com/

let the acronyms begin

you might notice that i have stopped referring to many of my doctors, nurses and various health professionals by name in my postings. this is not b/c they are secret undercover physicians to the stars or double agent spies of some sort, but b/c i feel strongly that my postings should continue to be candid, open, and honest. realistically speaking, honesty can sometimes be tainted by emotions and frustrations, and i don't want to call anyone out inappropriately or direct unwanted attention in their direction.

so, here's how this will work. if you would like specific information on any of the physicians mentioned in my blog, simply email me and i will provide you with any contact info you are looking for, or at least point you in the right direction.

hospitals: will be referred to by the first letters of each word in their full name (ie geisinger, which i talk about frequently, would be referred to as "GHS" for geisinger health systems).

doctors: will be referred to as "DR.", followed by an abbreviation of their department (ie "NEURO" for neurology). if i see more than one doctor in this unit, i will simply number them in sequential order (ie "DR. NEURO1", "DR. NEURO2" and so on...)

nurses: will be referred to as "RN" followed by an abbreviation of their department (ie "IM" for internal medicine). this would be followed by their first name (ie "RN IM Jackie").

specialists: if i am explaining a new treatment or therapy, i will probably refer to them by their name, with a link to their web page if available. i think this is important to help further explain the treatment and to make sure i am giving proper credit to their techniques or methods. ideally, i would love to help other people find relief if these treatments help me.

remember, you can view these postings directly on kitkat chat's blog
http://meggerv2.blogspot.com/

have you ever thought about the small, mindless, involuntary decisions or choices you make throughout one day? i'm talking really simple. like choosing "lunch at the delhi" pink or "get me to the taj on time" pink at the manicurist (although that choice isn't always so simple), or admiring the checkout girl's headband at the market, or opting for aimee mann over vampire weekend on your iPod playlist. i know that for me, personally, i've noticed that i frequently internally compliment things that others say or do, but not necessarily choose to tell them out loud. (hello, i don't want to divert attention away from myself!) BUT something happened to me today that made me rethink that whole mentality. it came in the form of an email, and it was an invitation to go hiking with part of the J-Crew here in town.

(if you are not in the know, here is the DL- the "J-Crew" refers to friends of jana- as in, her "crew". yes we are street thugs here in central PA, just roll with it.)

to be completely honest, my first reaction was to...
1) roll my eyes,
2) growl, and
3) delete.

incredibly mature, i know, but i'm still embarrassed and annoyed by the fact i can't go hiking or bowling- even tho i never really liked either before my legs stopped working. (reminds me of how nicely this worked out to outfit me w/ a rock solid excuse to get out of those bug filled camping trips.) but after i trashed his invitation, there was another message in my inbox. this time, it was to me only. so instead of paraphrasing, i'm just going to paste his message here:


from: Elias Maurer
to: Meg
date: Tue, May 20, 2008 at 8:24 AM
subject: Hey
8:24 AM (14 hours ago) Reply

Hey Meg, I hope this week is going alittle better for you. I sent out an e-mail about Ricketts Glenn for this Sat. I know the hike thing would be out for you. However if you had a book you were reading of felt like taking a nap there are alot of shade trees in the lower parking lot. It usually takes like 3 hours to hike around the trail if I remember correctly. My memory goes with age just like my hair. I highly recommend Grotto's pizza afterwards. I like getting it when I get to the delaware coast. So just let me know if you would be interested or are feeling up to it. Take Care Elias

so yes, elias, the good citizenship of the blog posting goes out to you, my good friend. (don't let it go to your head, although i'm sure it gives you a couple free passes for least 2 or 3 shitty things you might do over the next few days.)

when i opened up his 2nd email, my head still shaking and my eyes 1/4 the way into the characteristic roll... i realized that he had not only called out the huge pink elephant in the room, but even came up with alternatives so that i could still be included!! i was speechless. my mouth kinda dropped open a bit and i admit... i had a few tears in my eyes. (hey, i cry at american idol! give me a break!) i thought, just a few moments ago, here i was writing off the invite w/out a second thought, lumping it in with yet another activity i couldn't take part in b/c of my energy (or lack thereof), weakness, and improperly working legs. but even tho i had written off the offer, i was dwelling on this inability to do exactly what everyone else could do. since when did i ever want to do what everyone else did?? i certainly didn't think about what i COULD do instead to still join in the fun- and yet he did. and more than that, he took the time to let me know it.

so see? a simple simple simple thing. a 1 minute email- 90 seconds tops. and it made my day. (and my blog- another achievement for you elias!) this is a classic example of what oprah's big give was lacking- THIS is a true random act of kindness. not raising oodles and oodles of cash and calling it a day. (take note producers since i'm sure you read my blog daily!)

now that we have all learned what a random act of kindness is, go forth & conquer. compliment the toll booth lady for her bedazzled jean jacket! wink at that cute little cub scout raising money outside of walmart for his camping trip (well, wait, be careful with that it could be wrongly interpreted from an overzealous protective mother.) tell the guy that repays you for your monthly expense account how much you look forward to those checks... and keep me posted on the results.

oh! wait! i just thought of another hometown act of kindness. rewind to a week ago saturday. i had hit my height of cabin fever, and feeling particularly sorry for myself that i had such successful friends that they were too busy being fabulous to ever call me. (was that over dramatic?) i've driven about a total of.... 4 times in 2008, so i figured why not take a drive, clear my head, and pick up some birthday cards at walmart. i hadn't been outside in days, since i've slept most of april/may away in zombie land, so the whole trip was a little bit of an out of body experience.



anyway, i was standing in the cards, staring aimlessly at the endless rows of fathers day greetings, and betsy came up behind me. she gave me a hug and asked how i was feeling, and you know what i did? basically burst into tears about how i was so tired and missed my friends and just really... insert sob muffled by gulp here... really having a rough time. (i was too busy being a wack job to be properly embarrassed by my meltdown.) you poor girl- how did you ever compose yourself to respond to me? after chatting a few minutes, we said goodbye, and she gave me another hug/pat on the back. that little gesture meant so much. i had been feeling so alone in this town, both literally and figuratively speaking, and her warm and genuine greeting really grounded me.

so technically betsy also qualifies for the good citizenship award- hope you don't mind sharing, elias!

remember, you can view these postings directly on kitkat chat's blog

http://meggerv2.blogspot.com/

complicated

the title sums up my recent appointment w/ the pain intervention clinic last friday. this isn't the first time i've been labeled as a "complicated" patient- but i sure wish it was the last. unfortunately this isn't like grey's anatomy, where a "complicated" patient means izzy will race to your defense at every assessment, and meredith will pull double shifts to research some obscure, never been done before procedure that results in derek performing a risky but ultimately successful surgery that cures you forever. sadly, this is not the case in the life of meg. oh the days when "it's complicated" was my response to a relationship status. (and there have been a few of those, haven't there?) i can't believe i am asking for that back. hahahah.

the past week or two have been spent sleeping... i do rotate tho, so no worry for bed sores. jk, that's kinda gross. i sleep on the leather couch in the living room, i sleep on the loveseat, i sleep in the bed, and i sleep on the sofa in the piano room. oh! and in the car, can't forget that one- those zzzz's are usually on the way to geisinger, which was the case on friday. i had a consult at the pain intervention clinic in the new geisinger pavilion off woodbine, and to be honest, i had been dreading it. due to the pain factor of my MS, it throws many doctors for a loop. they're not sure how to treat you, who to refer you to, what diagnosis your pain is attributed to... i mean, i've been to neurology, rhuemotology, internal medicine, pain clinics. one of the most difficult things for me to deal with is the huge gap between my expectations and what the doctors think my expectations are. i'm not a dumb girl, and i've had plenty of experience over the past few years. i do realize i have a disease that which there is no cure. i realize that, i accept that, i do not have any false expectations. but for some reason, i have to battle this with each new consult i go through, or each new doctor that is added to the team. they seem to preface their opinions with "we don't have a magic pill that cures you" or "we can't make everything better".

yes, yes, yes, i realize that, can we move on to what you CAN help? maybe i should tattoo that on my forehead. or INSIDE my brain- then they'll see it when they review my MRIs. you wouldn't think getting some relief would be such an uphill battle would you? i know, i know, i have complained of this before. but it really is a sense of utter defeat for a doctor to look you in the eyes and say "sorry but i just don't think there is anything we can do for you." i don't accept that. how can i accept that? it's the year 2008, we've cloned animals! can't you relieve some of my pain?

i had done some research lately, mostly on spinal chord implants, a procedure that my interest was renewed in when i heard of a local woman with MS whose main symptom is severe, continual leg pain, who had recently received one. i talked this over w/ dr. IM1, who considered it a possible option, although a remote one for her. (there seems to be many "remote" or "last resort" options, but none that precede them. odd.) regardless, i would have to be cleared by the pain clinic doctors and eventually the surgical team, so she put in a reference for a consult at the intervention clinic down the street.

but friday proved no different from previous consults, esp. where pain was concerned- there was a few hours of such frustration. the consult took almost 3 hours (no lie), and i was seen by a nurse, a PA, and a couple doctors. i was so exhausted, so drained, so tired. for most of the consult, i was curled up on the exam table (a nurse had gotten me one of those fabulously heated blankets- the ones that they keep in the reverse fridge? i want one of those btw) mumbling half the answers and hoping mom would fill in the rest. there were a few bad omens during the initial exam. one was when the pa said, innocently, "so, did your physician refer you to dr. pain1 specifically?" a red flag went up. when i told him no, i also asked why. with some hesitation in his voice i was told "well dr. pain1 is against spinal chord implants, and i see that this is why you're here, to be considered a candidate." i sighed. deeply. "well, he can always refer you to another doctor." awesome, i can't wait to go through another 3 hours of consult, why am i even here???

when the doctor finally entered the room, i felt like i was watching a really bad foreign film. for one thing, the doctor had a heavy heavy accent, which made it very difficult to make out the words- and the speed of his speech, oh boy. it would make your head spin. the PA seems to pick up on this "issue" and he was running an odd, awkward translator role for my mom and i, while also briefing the doctor on my previous medical history. but here's what we wound up with, yet again. "unfortunately, your pain issue is quite complicated, and because it is mostly from your MS, it makes it a very difficult condition to treat." yes, i have heard this one before. continue. "spinal chord implants are not an option. they do not work, and you are too young." well that part was short and sweet, and def expected. "there is not a magic drug to fix your pain, we cannot cure every medical problem, and every situation is different, and this is something you did not ask for, but you have been dealt with, and it's not fair, but you just have to take the drugs and be a zombie most of the time, we have no other option for you." wow, right? by this point, i had hidden behind my sunglasses and was twisting my poor hands into some form of japanese origami. which is also code for "i'm furious/hurt and trying to control my emotions." i'm sure some heavy, deep, Lamaze-type breathing was used at some point. mom even tried to speak up, with "i'm sorry, she knows that there isn't a cure, that's not what she's asking for, she just wants some relief." but even with restating the obvious, he continued to go on and on about how there aren't magic cures or a pill that fixes everything......... oh, i wanted to bash my head in. unfortunately for me that wouldn't have given me any relief, since my migraine was pounding relentlessly already.

the ONLY recommendation he could give me was to switch up my pain meds (swap out the fentanyl for methadone- don't even start about anna nicole smith, i already voiced my hesitation- and adding back in baclofen, which helps with muscle spasms which in theory would reduce your pain if the spasms were reduced) and see one of the clinic's pain psychologists. i couldn't keep my mouth shut on that one. i'm sorry, but i already see a therapist who i actually like (and i have trust issues with therapists, so don't even go there) not to mention i don't think imagining my pain as a bird and visualizing it flying away on wings of happiness is going to be something i can tolerate right now. as there is stabbing pain making its way up and down my legs and radiating with a burning torch into my back. (i left that last part out.)

i just wanted to go home... go to bed... forget this day. i couldn't even THINK about how i was going to have to see yet another physician since this one clearly had me in a body bag and halfway in the ground already. one of the reasons i always have someone else at the appointments with me (usually this falls to mom, as much as it thrills her) is because maybe in my discomfort and impatience, perhaps the way i view things could be... a little different from the reality. all that thinking rationally bullshit. but mom came away with the same final impressions this time- there was nothing they could do for me. hearing a doctor say that, no matter how many times you might have heard it before, is always daunting. it's daunting, it's depressing, it's hurtful. here i have worked so hard- i have made sacrifices, i have been willing to try different treatments, i have made my appointments, i have changed my entire lifestyle- and yet i'm still in this position. where do you turn when someone tells you you're hopeless? i mean, really, am i supposed to live a life of sleeping constantly (and watching the hills)? that's not much of a life. luckily i'm not a depressive maniac and don't see myself on my deathbed just yet.

mom has been very upset about how much i have been sleeping, and i have to admit, it's a bit excessive. i've done a complete 180 from any insomnia periods i've lamented about in the past. i sleep through the night, awake around 8, return to sleep by 10, wake up in the afternoon, fall back asleep through dinner, and wake up just in time to spend a half hour w/ dad before he retires to bed. then the whole thing starts all over again. i can sometimes force myself up to a previously scheduled doctor appointment, but that's about the only part of my schedule i keep to. i've canceled outings with friends, i have bailed on plans at the last minute, i have avoided phone calls and not responded to emails. i honestly don't even have the ability to think past this moment- all i can tell you is that i'm so tired. i'm utterly exhausted, all the time. and when i'm not sleeping, i'm in massive amounts of pain. so you tell me which you would enjoy/tolerate more in this scenario?

there have been a few perks over the last couple weeks thought. a major one was the surprise i received in the mail from tess stephenson, my high school friend lauren's mother who still lives in high point (not lauren, she's in CO.) i received a box in the mail from their household, and i was surprised and curious as to what it held inside. and what a perfect, and most needed gift. inside were 2 hand made knitted afghans, soft and cuddly and just what the doctor ordered. the blue/green one hasn't left me side in about a week (it probably needs a shower just as much as i do!) the throws were blessed by the priests in their church, and the women who knitted them prayed for me during their making. i was so touched by this thought, and it really has given me comfort, especially after a trying day such as friday.

this one you may not see as a perk, but maybe it gives you a glimpse into how pathetic my recent days have been. i was called back in for a follow-up re: my nail infection. ok, it wasn't really a nail infection. this is embarrassing but equally hilarious so i will share it. somehow, i got a yeast infection in my fingernail bed! hahahahah! hilarious right? and apparently it was the talk for the derm department. now, most of you are thinking "i have never heard of that!" and apparently neither has anyone else. why does this not surprise me- it's just another example of how i get the weirdest medical conditions out there. (or, not out there.) anyway, the doctor was incredibly good looking. actually, he looked quite similar to a brief love interest i had the summer after graduation (hmm, i think that was it? well, yes, i think that was it. gee my memory is fuzzy.) so to get called in for a followup was just, well, the highlight of my week. good looking AND smart- now that's a combination i can't complain about!! my mom tried to point out that he probably called me in for a genuine followup to the nail infection, but then she left me have my deluded fantasy as i fell asleep on the sofa.

even though i have made a habit of not taking calls over the past week or so, a few of you haven't given up. a persistence award definitely goes out to jana. today she was in the neighborhood visiting a potential dog sitting family, and stopped by afterwards to see if i was still alive. i have to admit, i have been so horrible about the phone calls. it's embarrassing b/c that's not my style at all. but i've just been a solid wreck, and barely functioning. i'm not even emailing like a champ, which is usually part of my daily agenda. after complimenting my fabulous bed head, she settled onto the couch opposite me, and was probably tempted to sleep away the rainy day like i planned to do. but, i managed to stay awake for the entire half hour visit- an accomplishment since i fall asleep on my poor mom and dad consistently. (mom will ask me if i want some coffee- i'll nod enthusiastically YES and 10 minutes later i'm snoring again under my comforter!)

i also had a visitor on sunday afternoon- miss lindsay was in bloomsburg visiting her mother for mother's day, and stopped here on her way back to dc. she always comes with some kind of gift or surprise, and i wasn't to be disappointed this time! she brought a bag full of chick reads (same thing as chick flicks but with the obvious change in media) which i cannot wait to dive into. unfortunately i can only read 1-3 pages a time due to my vertigo, but it prevents me from flying through novels as i tend to do if i am excited by them. we had some quality girl chat time, which included an in depth analysis of her current love life by dr. meg- hilarious considering i haven't had a date in months. oh well, at least i can still offer the wise, older woman point of view.

but for the most part, i have been sleeping, i won't argue that fact. i had to force myself to write this tonight, which is also uncharacteristic of me. i look forward to blogging about my days, and to not have the enthusiasm or energy to do so was depressing. it's hard not to have days where you wonder "why me?" or are obsessed with thoughts on everything and everyone and everywhere you are missing. i also feel incredibly guilty for letting my physical limitations restrict me so much. i feel like i have "given in" to their restraints, and i feel that i have let down so many people. i keep apologizing to my parents, esp. my mom, for sleeping so much. every time i wake up, the first words out of my moth are "oh i'm so sorry, i'm so sorry." as much as they tell me they're not mad at me, they're not upset with me, they just hate to see me go through this and wish there was something they can do- as much as they assure me of that, it doesn't make me feel less guilty. b/c i feel responsible for how much i "allow" this to happen. i guess you don't win all the time.

i hope my attitude picks up over the next week, and that this rough period lifts long enough for me to get my independence and determination back to DEMAND some relief or at least other options from the medical team. my internist called me this afternoon and in a teary, shaky voice i tried to share with her what has happened over the past few days (week). she was asking me if the change in medicine was okay with me, and i said simply yes, no, i don't know, whatever you think. she remarked that i didn't sound as "feisty" as i normally do, which made me tear up even more. she's right, i have lost that fire. however, i'm confident it's only temporary, b/c you can't keep a good girl down forever. right team? sweet dreams.

remember, you can view these postings directly on kitkat chat's blog
http://meggerv2.blogspot.com/