March 23, 2008 by aglol

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…

March 23, 2008 by aglol

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.

March 15, 2008 by aglol

MS SoftServe on YouTube

March 14, 2008 by aglol

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.

March 9, 2008 by aglol

Linking it forward…Kudos to Lisa Emrich

February 22, 2008 by aglol

It is…no, it isn’t….yes it is.

Just home from the visit with the Neuro-Ears Nose Throat expert. After a brief synopsis of my almost 20 years with MS and balance issues…emphasizing the Vertigo of 1989 and ending with the most recent bout of dizzy/off-balance/ambiguity.

I am now told that contrary to the prior consideration that yes, it is my MS.

Okay.

Not sure why I’m always feeling that I should have known, or seen any of this enigma disease coming. It’s because I’m constantly thinking and analyzing and trying to make sense, or have control of this lot in life. I think I’m hard wired that way. As fate would have it…this completely unique, totally variable and unpredictable condition is like a CarTalk episode stagnating at Stump the Chumps.

Just when I think we (me and my treatment team) have a handle on it… we turn out to be throwing hypotheses around the room haphazardly. And that leaves me thinking…meta-thinking actually.

If only I could sit back and let it play itself out.

I’m scheduled for a test with a Dr. Dai. It’s a visual/aural test that I am told will likely leave me extremely dizzy. I was instructed not to eat 1 hour prior. Vomiting is a common side effect of the test and they apparently prefer dry heaves over content.

Since my appt with Dr. Cohen, I have been very expilary (a word my daughter made up-meaning more than very) dizzy. Now I need to figure out how to get out of the city at rush hour while experiencing said dizziness.

Looks like a job for Dr. Verter!

more later….

February 19, 2008 by aglol

Sticking to it.

My dizziness has seriously improved. Dr. Verter comes through yet again. So, I have a much better position on the earth… not completely stable…but one that is far more secure than I began 2008 with. I’m not sure how soon after I left his office that things really kicked in for me. It’s a subtle and gradual process that has left me feeling completely different..in inexplicable ways.

So I began to reconsider my trusty stick. Do I still need it? My balance is by no means perfect, but that has always been the case. So I did some tests without it. Rode the subways…slowly walked up the stairs sans stick, and I realized what I think I already knew. The stick is an important announcement and a reminder. For the prior…the world at large is the audience and for the latter the target is me.

It has been a significant help to make my invisible condition..disease…identity (what is the right word here?) present…apparent… evident. People rise to the occasion in ways that I didn’t expect. Be it a subway seat or holding an elevator… In many ways it let’s the societal cream rise to the proverbial top. There is a lot of good out there and if people are given the opportunity, they crack open the solitude of commuter stance to reveal the person behind the mask. I hadn’t realized how much power there is there. It makes me feel good about the people I’m sharing the planet with.

Then of course there is a certain level of empowerment in taking charge. I thought that by using this walking assistant I was admitting defeat. Not consciously of course, but on a deep emotional level. As if I was making a statement to the world that MS has me in some way. What happened was really quite the opposite. The stick has given me power. The power to bring out the best…and the confidence that I can walk farther and faster without kissing the sidewalk.

There is also the reminder I aforementioned. It reminds me that I’m not the same. That I do need to take special considerations. That I need to slow things down and be more concerted in my efforts. And although I only use the stick commuting in and out of my building at NYU it has encouraged many conversations with people about Multiple Sclerosis. People who I’ve worked with for almost 5 years that had no way of knowing.

A common response for so many people is “Oh, you must have a mild case that doesn’t affect you then”. To which I explain, My symptoms are every day, all the time- it’s just that they are invisible. Sometimes I say more, sometimes less…but everytime I feel as though I’m educating one more person about the many faces of this disease. Adding to the list of people they know with MS, hopefully making it easier for the next person they come in contact with.

This walking stick is as so many things. I’m not sure I’ll ever give it up. I think I’m starting to love it.

February 14, 2008 by aglol

Don’t ever ASSuMe…

So this week Dr. Miller, by way of Jenn Decker (his nurse practitioner) told me that his latest thought is that this dizziness isn’t my MS.

No Way.

That caught me completely off guard, but it is exciting on a number of levels. The fact that it didn’t seem to be affected by the steroid treatment sent my mind in so many directions. Is this ever going to go away? Is this my new normal? I shutter to think.

But if it isn’t my MS, then it can be treated… it isn’t likely that it will be permanent.

But wait a minute….rewind 19 years to Baltimore.

Back in 1989 , my first year with MS, I was in film school living with 4 other girls in a town house off campus. After a few days with a virus I woke up to find my clock spinning. This was followed by a trip to the ER with a waste bucket between my knees. I remember the day vividly. When we got to triage I threw up in their garbage can and proceeded to do so at ever stop I made from there on in. After 17 hours in the ER on an IV, listening to very colorful stories of my neighbors behind the sheets serving as walls, unable to move my head with out losing my cookies- I was given a room. Being sans family in Baltimore left me little desire to go home. No one to take care of me there. My Dad and Linda came from NJ to visit me and my friends from UMBC art dept brought cheer and a mirror so for my three-day stay that I could see people entering the room.

When the doctors determined it wasn’t my MS and gave me a patch behind the ear. I didn’t question it. I used this little circular trans-dermal motion-sickness-aid while in Israel in 1985, in order to tolerate those hairpin turns on the buses. It worked then, as it did in this case.

As MS became less of an enigma to the medical community, I looked back on this experience thinking they didn’t know what they were talking about. Vertigo is now a symptom of MS …of course this bout was MS. To this day I have dealt with a quick turn of the head resulting in nauseas and dizziness…. I just thought it was a part of the me with MS. The part that is inseparable. After almost 20 years of this to have a symptom not actually be MS is mind blowing. I have so many crazy invisible symptoms going on and this fit in perfectly.

So I immediately checked in with my brilliant chiropractor. I hate to even call him that. He never cracks anything. (or I should say very rarely) His knowledge of how the body works, his instinct for areas that need release on a cellular level is beyond words, it’s impossible to describe the work he does. All I know is that Dr. Allan Verter needs to have himself cloned. It’s scary that all of this power to heal exists in only one person.

I’m not the kind of person that rushes to alternative medicine… I’ve been on Copaxone since 1993, and I’m on a number of other medications that clearly work for what the are there for. (that was an awkward sentence!) But the treatment that Dr. Verter provides defies explanation and it is successful. So once I learned that this dizzy head might not be my MS I couldn’t wait to tell him.

And he went to work. And my sense of stability on this planet has improved. And the people rejoiced. (or at least my people rejoiced!)

So now the question is…do I continue to carry this stick? It has served as such an important identifier on my commute. I’m not sure I should give that up.

Tune in next time for this, and a million other topics that will be addressed!

February 5, 2008 by aglol

yes i CANe

So the normal disclosure… if you’d rather not hear details of my MS experience that may make you uncomfortable about your uncertain future… consider yourself advised.

I’ve been using my walking stick for almost three weeks now. It didn’t take long for me to get used to having it around…and to learn how to juggle it with my commute gear. My backpack, my water bottle, my reading material, my ipod, my train tickets and then Metrocard. It takes some practice..but I’m finding the rhythm.

I’m move back and forth between considering what my needs are and how I am perceived. It shifts from day to day, minute to minute and scene to scene.

What started as a strange feeling that I am perceived as someone who is faking it… evolved into a better understanding of why I need this. Because I clearly don’t have problems with my gate (unless I stumble with a foot drop once in a while) it occurs to me that it almost seems unnecessary for me to be using it. I felt questioning gazes that I answered for the first two weeks with a sticker I put on my cane that read “I have MS”. The gazes turned to squints as subway passengers sat across from me looking my way.

I was reminded of the attempts I made as a young person (middle child) searching for that extra attention. The ace bandages and slings on perfectly normal arms, wrists and ankles. The troubled looks beefed up by eight year old winces wanting to stay home for a little extra mom-time.

But this was legit. Even though I was using the opportunity to examine how people treated me with this implement… I legitimately need it. It wasn’t a show.

As I got used to carrying it… and using it to provide extra support I found that I was able to move quite quickly with it. It seemed that as moved with the crowd people would frequently bumpt in to it, kick it, and one time a woman actually pulled it from my hands (inadvertently) when giving it a “flat tire”. Very apologetic of course.
During this time I questioned my role with the cane further. When leaving and arriving at work I had it with me and people I interact with daily expressed concern over my well-being. Most don’t know I have MS. My response to their concern changed over time. What started as a sometimes detailed explanation (I always try to educate whoever I can about MS) became “I have balance issues”.

It was a funny coincidence that during this period the Science Times had an article that described a more dramatic situation than mine. ( PERSONAL HEALTH; A Stable Life, Despite Persistent Dizziness – New York Times JANE E. BRODY)
Somehow finding this explanation helped me to identify myself in a more comfortable way. And even though no one asks me why I’m using it, I tell myself throughout the ride. “I have balance issues” and somehow that feels good. Not, “I have brain damage”, or “I have an uncertain future” just balance issues.

I like that somehow. I can own it. And the cane… just shows that I have more to contend with than the average joe (or jane..as it were) commuter. That works for me too.
more later…

MS~LOL: Multiple Sclerosis a Life Of Learning

How do you learn about a disease you have without scaring yourself to death!?

Category Archives: LOL-Day to Day

MS SoftServe on YouTube

Linking it forward…Kudos to Lisa Emrich

BRASS AND IVORY

FRIDAY, MARCH 7, 2008

MS Awareness, Blogging Friends, and a little Link Love