Monthly Archives: March 2008

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MS SoftServe Progressive (in a good way)

Slow but steady. The text for the “staging ground” is being posted. Its the “Don’t Worry Be Crappy” theory in full force. More editing is needed… but it will do for now.

So that text will be up in a day or so. But a bunch of text describing what will be isn’t much. Words get boring and don’t hold the attention span for long on this multi-media ride that is the Internet. So where is the video?? Its in the proverbial can…just needs a little bit of editing. It’s unfortunate that I didn’t have Final Cut Pro handy when I was recuperating from my Pancake House burns. That would have been a very productive week. No, I spent my days dressing wounds and writing angry letters to the Better Business Bureau.

I was hoping to find an NYU student who would be willing to do the editing for a little extra cash. (little is the operative word) Unfortunately they are too busy with coursework. Damn those priorities!

On another note: SoftServe Matters, the nonprofit that LegalZoom is processing is proving to be a much slower process. I check its status every other day. It makes me anxious because I know that once it is official there will be grants to apply for and proposals to write.

It’s very much hurry up and wait ride. Wanna go for a spin?

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Horton Hears a Yell… life lessons Part 2

If you haven’t already read part 1 of this episode… you may want to.

Learned: Don’t expect IHOP (at least the Bloomfield, NJ IHOP on Broad Street) to know basic first aid, care about the community they rely on, or to take the high road when responding to a potentially serious injury on their premises.

Injury Status on Day 2

Dressing blistered wounds in places I can’t reach by myself. Treating with Silvidine cream. Unable to wear anything but loose cotton pants. (no chafing undergarments!) After a 24 hours of thinking, I realized that someone should have offered me some sort of first aid. Now granted, where I was injured was not visible to the people around me. It wasn’t too hard to see the burns on my breast…but I wasn’t showing to the wait staff. I reserved that view for my mom and me. If my husband were there, he would have been managing the scenario, getting me ice, calming the children… he would have instigated our immediate departure I’m sure. He’s good like that.

As I considered the response I wondered why there was no one available to help me through my shock to get treatment for the burns. Couldn’t someone have pulled me aside to ask how I was? Maybe someone could have spilled ice water in my lap. I’ve subsequently learned that a burn continues to burn until it is stopped. Never an issue when I’m at home. Burn your finger and open the freezer for a boo boo bunny ice pack. Of course it was much more complicated here.. but is it unreasonable to expect in a place that serves hot liquid for them to be prepared to help their patrons with basic first aid?  Apparently all IHOP is capable of is offering free meals and blaming you for the accident. The waitress did that very well. But I forgive her. Had she been trained properly she wouldn’t have been trying to place boiling water over my head. I never heard her say that she was doing so… it was a crowded restaurant- maybe she did. Even so, if she had alerted me, it was before I turned that she began to put the water on the table. Had she been placing the water at the end of the table, over no one’s shoulder- this wouldn’t have happened. So, I wrote a lengthy letter to the owner of the restaurant explaining to him that he needs to better train his employees or this would likely happen again. Along those lines, putting a first aid plan to use would be critical to properly respond to these accident when they do happen. I also include my $50 plus in copayments for the Dr. visit, the Rxs, and first aid supplies. (view IHOP initial letter) Apparently that isn’t the practice at this particular IHOP. In fact, the opposite is true. I wrote out this letter, detailing the circumstance and describing how they might learn from it to improve their service, and protect the community that they rely on. I then proceeded to look for the corporate address so that I could cc. the headquarters. In doing so, I filled out a form on their website accordingly:

Incidentcomments = I have a letter that details my experience that resulted in medical attention and longer term recovery. I have a certified letter will be sent to the Broad Street address, and I need the appropriate corporate address to send it to as well. Your attention to this matter is greatly appreciated. Amy Gurowitz

And then.. an expected polite return letter from corporate:

Dear Ms. Gurowitz:Thank you for contacting us about your unpleasant experience during your recent visit at the IHOP in Bloomfield. Our reputation has been built on top standards of quality food, friendly service and clean atmosphere. Whenever there is a variance from this, we appreciate knowing about it.We are sorry to hear of the injury you encountered at this location. We have forwarded your information to IHOP’s Franchise Business Consultant for the North region so that he can alert the franchise owner of your experience. It is my expectation that the franchise owner or his representative will investigate this situation and will be contacting you shortly.It is our hope that you will allow us the opportunity to once again earn your trust. We appreciate the time and effort you took to share this information with us and we thank you for your patronage.Sincerely,Don MillerGuest Services RepresentativeIHOP Restaurant Support Center

But what came next absolute blew me away. More specifically it infuriated me. Mr Don Miller suggested I would be a referred to the Franchise Business consultant of the North and s/he would contact the owner of Broad St. Bloomfield IHOP, who came back with this:

Dear Amy,Thank you for contacting IHOP about your experience here. Regarding your visit on march 15th: Please take note, we have statements from the 2 tables surrounding your party. Each one clearly noted that your actions caused the incident you are referring to. If you would like to pursue further action that is certainly your right, however, be advised, we pursue fraudulent claims to the fullest extent of the law.Thank you. Cliff Gennarelli – Owner, Bookdale IHOP.

Are you serious! Not only did they not apologize, they blamed me for the incident! This community restaurant that draws in our children with promotional sugar pancakes, poorly trains their staff to serve boiling hot beverages, has no first aid response in place… and then blames the victim for entire thing. more later…

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Horton Hears a Yell…and other life lessons Part 1

On Saturday March 15th, my daughter (6), two nephews (2 & 6), mom (65) and me (39) went to IHOP at the pleading of the little people. Turns out they have a coveted “Horton Hears a Who” pancake special that includes carbs (to turn into sugar) and candy sugar (lollipop) and special topping (sugar disguised as yogurt). We reluctantly acquiesced.We were seated and perusing the menu when our waitress took our drink order. Coffee for me, tea for mom, and an unfortunate beverage in honor of the celebrated movie that included sprite and jell-o blobs who-se name I can’t recall.Shortly thereafter our waitress stood behind me and proceeded, unannounced to lower a carafe of boiling water for tea over my shoulder. Not realizing this was happening I turned around and the waitress spilled this two-cup pot of boiling water down my shirt and into my lap. So I did what any mother, aunt and daughter would in this situation. I jumped up with a yell, and proceeded to try and pull my pants away from the searing flesh of my crotch. (pretty graphic, huh?) Okay, how is this – I jumped up with a yell and proceeded to pull my now saturated pants away from me. Vague yet understood I think? I’m going to stand by the first. This calls for graphic exposition here.It’s amazing how shock keeps one in a clueless state. Don’t get me wrong, shock is definitely helpful. Had I not been in shock I may have ripped off my clothes and created an entirely different scene. At least I would have gotten the medical attention I required. In this case however my mom was in shock too. Once my clothing cooled down I realized I couldn’t get comfortable sitting… though I assumed it was because my clothing was soaking wet. My mom suggested I go to the doctor… and I said why… I’m not going to sue anyone. (“Maybe you should check to see if you are seriously burned“a not shock-ed person might have suggested.) But there I was, sitting in my wet clothes, starting to feel pain in my “underneath” suggesting we call Norm, (mom’s husband) to drive over a change of clothes while we consider the menu options while the waitress implies that had I not moved, this wouldn’t have happened.So, should I cut to the chase or is this worthy of details?? How about I’ll continue on with the details…and if you find this tedious… you can skip to the end which summarized all that I’m about to say. Great… everyone is happy.Of course the managerial staff was over in a jiffy offering that my meal would be free.. small consolation to say they least. I was looking at the menu apathetically as the waitress once again lowered a pot of boiling water over my shoulder, this time announcing “Be careful with this one.” I was clear enough to realize how in appropriate this statement was. And the manager was back offering my mom’s meal gratis. Forget the free meals! How about some basic first aid!Had we not been sitting with the kids we would have gotten up an left the scene immediately. But they had ordered their Horton sugar specials and were anxiously awaiting its arrival and my shock was keeping me from any serious decision making.It’s amazing how protective it can be for the body to shut down… yet rather immobilizing as well. We called the manager to watch the children while Mom and I went to the bathroom to get a closer look. She thought she saw blistering, but wasn’t sure. And the shock… no decision making continues.So Norm (step-father) arrives with a change of clothes and I finally realized that I wanted to go home to get some ice. Considering the personal nature of the injury…it seemed like the most private option. I wasn’t thinking clearly yet, but I could feel what might be pain start to kick in. Helping Madeline cope with what she just witnessed had not even entered my radar yet. She was in her own shock and I hadn’t completely realized what happened myself. So Norm comes and takes my place. I leave and start to drive home. Feeling something that is getting closer to pain, I call my husband who is in Denver at a conference. He is the voice of reason and concern and guides me to my Dr.’s office which is on my way home.After about an hour of standing (sitting isn’t an option anymore) in my Dr.’s waiting room (another story!) my mom came to comfort and assist (thankfully!) …and I’m brought to the back where we wait another 30 minutes before I’m given an ice pack. The nurse setting me up inquires location and then says “you were burned on your booty?” (That expression has risen from its rap slang origins, to the elementary school sect and now to medicine!) 15 minutes later and the doctor comes to see me. She confirms that I have 2nd degree burns on my upper-upper legs (really my booty) and a 1st degree burn on my breast. Prescribes Vicadin and Silvidine cream and I’m off and gingerly limping.Feeling more pain…and wondering how Madeline is dealing. She’s off watching the Horton movie with her cousins. It’s day two of the release and she is already on her second viewing. The marketing has paid off big in this house…and we have surrendered!It was a day later that I realized what went wrong at IHOP.

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A peculiar week

Due to an unfortunate incident that occurred this week… I’m at a loss for entries. Once the legality of this issue is resolved- I will have so much to say about it. In the meantime, I will work to concentrate on issues more significant to this blog. That being… the rest of my life!

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MS SoftServe and other distractions.

The progress of MS SoftServe is slow and steady.

As I work towards the immediate goal of editing the interview footage that will support an explanation of the site, I am seeking the balance. It’s a balance many struggle with. Full time employment (administrative staff at NYU-Tisch Film and TV), home life with my husband ( a photography professor and artist) my 6.55 year old daughter in first grade; a welcome distraction with homework, games, violin, conversation, reading and must see movies. (Horton Hears a Who ) Oh yeah, and a certain amount of maintenance :). And of course Multiple Sclerosis, something most of the people reading here can relate to, throwing in a new challenge on a daily basis.

Yet secretly, behind the scenes I’m editing and writing and planning. Sometimes it’s not in a tangible way; sometimes its progress that is only evident on a neuron-ic level. Keeping company with my myelin, or in some cases a lack there of :), it is progress that I can be excited about.

On a more obvious level I am working to start my consulting business SoftServe Central- Educational Concepts in Online Learning. Using my expertise in instructional design combined with almost 20 years of MS (come June 2008) I consult on how to design ideal education for those of us with this label, this lot in life. How to speak to us, the patients in a way that recognizes what our experience is and that we are unique individuals in spite of a common diagnosis. To explain how to connect with each of us with our individual version of this disease without alienating any one of us.

I’m also in the final stages of developing a non-profit organization called SoftServe Matters (grey matter, white matter, your funding matters!) whose mission is to create educational websites for individuals who need to learn about any disease in a customizable, reduced anxiety way.

Then there is my blog and the greater world of MS bloggers. I would love to sit all day and read and write. I want to tell the bloggers I’ve read (and continue to read) how significant what they are saying to is to the MS world and the greater world of people who also happen to be patients. I want to connect to more people, who like me and many who I have met, struggle to learn about their constantly evolving unique version of MS at a safe place that to be confident we aren’t going to learn about things that aren’t relevant to us; facts that will cause anxiety about our uncertain future. (I want to edit that last run on!)

I want to work on MS SoftServe, a solution that is waiting patiently for funding

I have to keep this hope and desire quiet while the rest of my life happens. I need to find balance. Don’t we all.

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Linking it forward…Kudos to Lisa Emrich

BRASS AND IVORY

PERSONAL THOUGHTS AND UNSCIENTIFIC OBSERVATIONS –HEALTH CARE, BIG PHARMA, PUBLIC POLICY, AND MONEY INTERESTS WITH A LITTLE MULTIPLE SCLEROSIS THROWN IN.

    FRIDAY, MARCH 7, 2008

    MS Awareness, Blogging Friends, and a little Link Love

    There are at least 137 MS Bloggers out there actively discussing whatever suits their fancy. Below you will find many of these suspects….wait… I mean lovely blogger friends who happen to have multiple sclerosis.Remember how I mentioned a group project was in the works? Well here it is. As the founder of the Carnival of MS Bloggers, I’d like your help in spreading the word, and in doing so we will strengthen the bonds of our own little Multiple Sclerosis Blogging Web (and share some linkie love with each other). If you are not an MS Blogger, but are a regular reader here, please feel free to help spread the word too.

    Here’s what you do:

    1. Copy the entirety of this post
    2. Create a new post and paste this content
    3. Visit 3 of the blogs listed below which you were unfamiliar
    4. Leave a comment on their blog encouraging them to participate
    5. Please add Brass and Ivory to your sidebar, if it’s not already

    New editions of the Carnival of MS Bloggers will be presented bi-weekly at Brass and Ivory. Previous editions will be are archived here and the button below has been revised to include the new link. Please update your sidebar.

    Names of the Blogs – Name of Blogger (if known)
    and # of posts in 2008 (as of 3/5)

    9 Brand New MS Bloggers joined the blogosphere in 2008!!New! Carole’s MS Blog (Carole) 49New! Great Mastications (Orla) 37New! Movin’ On with MS (Sammie) 26New! Me, Myself and MS (Emma) 10New! Being Ammey 8New! Blogbuster (Daniel) 6New! Etsy Crest (Shelby) 6New! Serina’s Blog 5New! I’m Beating MS (Michael) 2Most Prolific MS Blogger – so far in 2008!!Jim’s Deep Thoughts (Jim) 231Top 10 Rather Prolific MS Bloggers – so far in 2008!!A Stellarlife (Diane) 109Multiple Synchronicities & Sclerosis (Merelyme) 90Friday’s Child 70My Journey – Living Well with MS (Diana) 69Sunshine and Moonlight (Kim) 65The MonSter Ate My Branes! (Natalie) 65Queen Mediocretia of Suburbia 60Brass and Ivory (Lisa) 56Brain Cheese (Linda) 52Maybe I’m Just Lazy (Julie) 5128 Moderately Prolific MS Bloggers – so far in 2008!!Maggsbunny (Maggie) 48Living with Multiple Sclerosis (TC) 47MS My Way 43Bugs, Bikes, Brains (Shauna) 39
    Dancing with MS (Lazscott) 37
    Trying to Catch My Breath 37A Florida Journal (SwampAngel) 35 Now We Are Six (Tish) 33 Reality Check (Michael) 32 Access Denied (Herrad) 31 Multiple Sclerosis Blog (Charles of MSBpodcast.com) 30 MS Activist (NMSS) 29 Self-injecting Chinese Hamsters since 2007 27 Shirl’s the Girl (Shirley) 27 Disabled Not Dead (Anne) 26 Life with MS (Trevis) 26 Living with MS (Blinders Off) 25 White Lightning Axiom – Redux (mdm) 25 Stevers! 23 Word Salads (Have Myelin?) 23 Danieldoo (Vivian) 22 Caregivingly Yours (Patrick) 20 Deo Volente (Lisa N) 20 Down the MS Path (Vicki) 19 Do You Have That in My Size? (Denise) 17 Jenn’s Nook (Jenn) 17 Fingolimod and Me (Jeri) 16 Human Life Matters (Mark) 1651 Mildly Prolific MS Bloggers – so far in 2008!! A Life of Learning with MS (Amy-That’s me!) 15Behind Blue Eyes (Zee) 15Katy and Mike’s Adventure (Katy) 15 Living Life as a Snowflake (Sharon) 15
    Mandatory Rest Period (Kim) 15 MS Maze (Mandy) 15 My Journey with MS (Christina) 15 The Multiple Sclerosis Companion (Pat) 15 ‘Tis Herself (Kell) 15 A Short in the Cord (Joan) 14 Blindbeard’s MS Blog 14 Bubbie’s Blog (Cathy) 14 One Crazy Chick (Chris) 14 Pat’s Pond (Pat) 14 Rants and Musings (Cutter) 14 G and K’s Mom 13 MS Toolkit 13 Newly Diagnosed with MS (Andrea) 13 One Life (Stephen) 13 MS Not Just a Diary (Doug) 12 Rayne’s World (Jayme) 12 Chaos Personified 11My MS Journal (Jaime) 11 Purely Patsy (14 yr old Patsy) 11 Victoria Plum – Technician! (Victoria) 1126 Less Prolific MS Bloggers – so far in 2008!! Broken Clay (Katja) 10 Mark Pickup (Mark) 10 My Chain Driven Ride through Life in Alaska (Michelle) 10 Deborah Does Navel-Gazing (Deb) 9 Funky Mango’s Musings 9 Inside the Mind of a Squirrel 9Living Well with MS (Michon) 9 No Time for MS (Courtney) 9 Sorting It All Out (Michael) 9Travels With Lucy (Virginia) 9MS Caregivers (Prudence) 8Can You Hear Me Now? (Donna) 7Irreverence is Justified 7Multiple Sclerosis Notes 7My Tysabri Diary (Lauren) 7Chris Has MS (Chris) 6Diary of MS X (7 Divas) 5Electrical Disturbance (Stephan) 5Know Multiple Sclerosis 5MS in the OC (Frank) 5MS News and Notes (Deb) 5MS Recovery Diet Blog (Ann) 5The Endomorph (Ruth) 5The Jaws of My Life (Jaws) 5Time to Deal with MS (Homer) 5YodaMamma MS & More 538 Barely Prolific MS Bloggers – so far in 2008!!Some of these folks have multiple blogs or co-blog and are loved none-the-less!! Let’s help spread the love and let them know that WE know they are appreciated.Carolyne’s MS Odyssey (Carolyne) 4Defeating Illness (Chris) 4Intent, Context, Perception (Chris) 4Libbi’s MS Journey (Libbi) 4MS Recovery Diet Blog (Judi) 4My Autoimmune Life 4The Life & Times of Sancho Knotwise (JM) 4The Zen Pretzel Trick (Zen Angel) 4When it’s Raining… (Keeley) 4Kebenaran – The Truth 3Montana Homecoming (Sister Jane) 3Ms Quill 3Reality Chick (Keli) 3Catch My Disease (Lisle) 2Clods and Pebbles 2Dissonance 2Georgia MS Advocates 2Lazy Dog Public House 2Looking Forward with MS (Pamela) 2Surviving MS in Alaska (Michelle) 2These Pretzels Are Making Me Thirsty (Trrish) 2Troy’s Multiple Sclerosis Experience 2You Me and MS (Judi) 2Camille’s MSadventures 1Comment Column (Virginia) 1Erik’s MS & Lyme Blog 1Hop Bloody Hop (Philip) 1Jenn’s Journey with MS (Jenn) 1Living with MS (Cyndee) 1Mismorphic’s World of MS 1MS Musings 1MS Real Life Stories & Issues (Kristin) 1Postcards of My Life (Sherry) 1Rebooting Times 1Shoester (Doug) 1The BS of My MS (Heather) 1The Perseverant Pincushion (Trish) 1Tysabri Help (Deej) 1

    Having too many items from various posters to count: LJ Users with Multiple Sclerosis

    And finally – 26 MS Bloggers who have been silent in 2008!! Angst on a Shoestring (Gina)Dandelion Wine (Lynx)Doug’s MS Journal (Doug)Imagine Bliss Butterfly (Suzy)It’s Not All in My Head (Optimist)Just Above the Abyss (Heidi)Life with MS , seeking a cure (Karyl)Managing MS with Tai Chi (Joel)Managing Multiple SclerosisMarciaritaMichele’s BlogMike’s PlaceMS – My Scene (Virginia)My Complications (Amanda)My Demyelination (Tina)My MS ExperienceObject of My Injection (Michelle)Say It Isn’t So (Mouse)Talk Story with KimberlyThe Great NetXperimentTo Be Continued… (Jaime)Truth and Beauty (Baraka)Tryin’ to Imagine Bliss (Suzy)What is MS to Me (Dave)Willy’s MS RantsWind Among the Reeds

    Hard to categorize:I Have MS (Tim)Huggins’ MS Pages (James)MS – A Personal AccountMS Protocols (Jeff)MSB’s PodcastMSing AroundMultiple Sclerosis Blog and NewsMultiple Sclerosis SucksOUCH! It’s a Disability ThingSquiffy’s House of Fun

    Thank you for helping to build a stronger MS Community.

     

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    Vestibular- and other highlights of my growing vocabulary

    Far be it for me to explore the uncharted grounds that google exposes one to (see MS SoftServe) but in this case I wanted to get more info about this vestibular test so that I can be more specific in this entry. It’s always interesting to read the variations of phrases that describe what MS is… of course how it reads depends on the specific slant…the angle. The one that turned up in this search contains some jewels.

    Multiple sclerosis

    Multiple sclerosis is a disorder of recurrent, inflammatory CNS demyelination due to underlying autoimmune disorder. The onset is usually at 20-40 years of age. Episodes begin over hours to a few days and last weeks to months. Typical symptoms include optic neuritis, ocular motor dysfunction, trigeminal neuralgia, sensorimotor deficits, myelopathy, ataxia, and bladder dysfunction. Vertigo, at times mimicking vestibular neuronitis, is a presenting symptom in less than 10% of patients. Dizziness or vertigo occurs at some point in the course in a third of patients. Few patients present with hearing loss due to brainstem involvement.

    (I enjoy reading more scientific descriptions of the disease. I’m not sure if it is the high-level vocabulary or the lack of drama. I like that “trigeminal neuralgia, sensorimotor deficits, myelopathy, ataxia” Those are great words )

    So I went for the test that would determine if my balance and dizziness issues are my MS, or not. (once and for all?) I was warned that it was likely to leave me dizzy and nauseas- so I made sure to bring my mom along to provide an escort home through NYC commuter subway traffic. We had no idea what to expect, and could never have dreamed up the elaborate reality of what this exam actually was. (Although a couple hours watching the sci-fi network may have helped! And so my film references begin… starting with Altered States.)

    We were called in after the normal pre appointment- paper-work, sit-and -stare-at-your-feet-experience of the waiting room. After being lead through the maze that is Mt. Sinai, we were brought to a room that was large and had high ceilings. There was a simple looking examination table with an unusual cloaked apparatus above it. But that wasn’t where your eyes were drawn. (so to say) Instead they are immediately focussed on the cylindrical structure behind it. (Reminiscent of the orgasmatron of Woody Allen’s futuristic Sleeper) It was all white with a black chair that was hooked up to a mechanism that would allow it to spin. And to top it off was what appeared to be head gear.

    Looks like we are starting with this most intriguing unit. I sat in the seat, with head-gear on that held a reflective glass in front of my right eye-a digital link requiring no light to transmit. (City of Lost Children comes to mind) In complete darkness, with the chair spinning slowly, I watched the red dot, flashing lights and total blackness. Sitting in the dark I was reminded of the book I recently finished (that my mom was currently reading) The Wind Up Bird Chronicle, by Haruku Murakami- in which the main character spent a period of time in a well- experiencing the darkness and other transcendental experiences for which Murkami is an expert descriptor. After a period of time with sensory deprivation, spinning slowly, look-at-red-dot, flashing-white-bars, don’t-close-your-eyes, how- can-you -see-what-I’m-doing-in- this-pitch-lackness, this stage of the test was complete. I exited the cylinder with a dizzy sense – trying to regain my earthly presence.

    Next stop…tilted table with head up, darkness cloak, shoot-warm-air-in-to the-inner-ear-follow-the- red-dot-so that you feel nauseas and dizzy test. Then the other ear. Then the same with cold air. Then the other ear.

    Then one more test in the cylinder. I’m not sure after all of this that it is reasonable for anyone to have vestibular stability.

    So… it was determined that I am dizzy and nauseas and need a coke to soothe my stomach. Oh, and that all my responses are completely normal and that it is probably due to my MS. Thanks to Mom for being there to bear witness and steer me to that coke.

    Oh..am I back to square one again?

    Beep..boop…beep. “Dr Verter… can you squeeze me in tomorrow?”