Desperately Seeking Breathing

 This is cross-posted from my Nourish blog, to keep you up to date.  My health took a turn for the worse last Fall.  This post was published 11/8/12:

Last week, while we were all already dealing with a terrifying hurricane and no power for days, I began experiencing dramatic shortness of breath after only taking a few steps.  I struggled and struggled, trying to convince myself it was just something I was imagining, even though I was taking deep, prolonged gasps for air with the least bit of exertion.   I was attempting to persuade myself that I was simply deconditioned and if I pushed myself just a little bit harder I would end up with Olympic level lungs.   Finally on Sunday, Mary Kate announced she couldn’t watch anymore and she called 911. 

I actually conceded to ride in an ambulance, because I knew I wouldn’t have made even the few yards to the car.   And I agreed to go because all through that whole brutal week, one particular exchange had loomed in my memory.

Two weeks before Christmas in 1993, my husband Dennis offhandedly mentioned his past bout of pleurisy was bothering him.  What do you say to someone who you have been married to for 17 years and who is notorious for not taking care of himself?  “What are you telling me for?  Call the doctor.”  And he replied, “I will, right after the holidays.”  Well, he never made it to the holidays.  He died of a massive heart attack on December 20.  He had no idea he was mortally ill.  He never would have left his kids behind if he had had any choice in the matter.  These are the things that went through the head of this particular notorious patient, over and over again, as I struggled to breathe.

So off I went, sirens and all.  I was too scared to be mortified.  Well, I was too scared to be really mortified.  I truly was more relieved than anything.

I suppose because I grew up with a world class hypochondriac who I never believed a word from, I always assume that I will not be taken seriously.  And, as a matter of fact, I often am not.  Part of it is, yes, due to managed care and the time constraints that limit practitioner revenue.  But I think it is far more because healthcare providers are jaded, bored and do not listen.  (My PCP is an incredible exception, but more about him another time).

I lay on the gurney in the ER, wearily waiting for the first in a series of MD’s who would ask me the same questions, few of which would be apropos and who would not listen to the answers anyway.  Then curtain discreetly opened enough for a young voice to ask “Mrs. Cooper?” And he leaned his face in just a crack, with a raised eyebrow.  He was the most adorable thing I had seen in a long time and I nearly told him that.  Way to start an assessment by being defined as a dirty old lady.

He was cute, as I said, but mostly he just exuded niceness.  He was polite and sensitive but not smarmy.  He listened to my responses and then repeated them back to me in different words!!  Agghhh!! He got it!  When he came back with my lab results, which indicated I was in dire need of a blood transfusion, he looked so concerned I thought he was going to cry.

I was going to be admitted, so I was taken to a new unit the hospital had just opened to facilitate patient back-up.  Because oversight of this department was my job at another hospital, I knew what they were trying to do, but they were failing miserably.  Beds in our local hospitals are like gold.  When you have a high population of elderly and poor, as you do at the Jersey Shore, ER’s get backed up very, very quickly.  A hospital only has so many beds.  Most of them are dedicated, such as orthopedic, surgical, or mother/baby.  You can only place that kind of patient in that bed.  If your patient has a co-morbidity, such as a communicable disease or infection, they have to be isolated or put in a room with a patient who has the exact same diagnosis AND is the same gender.  So your bed possibility is reduced even further.  It is a constant juggling game.  Sometimes, the Gods smile and you can fit everyone together like a Chinese puzzle.  Other times, it is a nightmare of vast proportions with 20 seriously ill 80-plus year-olds languishing in the halls of the ER.  Within hours you have family members in your office, who you completely sympathize with, screaming at you to get their grandmother out of the ER corridor where she has been for 20 or more hours.  But you literally have nowhere to put them.

So up pops the Transition Unit idea (that is what we called it at my facility, it has other names, such as the Discharge Unit, which confuses the hell out of everyone because the patient is only being discharged from the ER to the hospital).  Anyway, the thought process is to get the patient completely assessed and prepped and tied up with a little bow so they simply have to be moved into the proper bed when it becomes available. The patient gets to wait in a comfortable bed in a nice little curtained cubicle.  Sounds like a great idea, doesn’t it?

Only it doesn’t work, except as a sort of a highway rest stop, without the tasteful souvenirs .  The patient continues to suffer in limbo.   Patients are not discharged from the main hospital any faster, and that is where the backlog starts.  So patients aren’t stuck in the hallways anymore, but they do get stuck in these way stations.  They are uncomfortable and there is no privacy.  When you are already sick, you feel simply miserable.  Patience frays, family members lose their tempers.  Frequently with each other.

I ended up in the Discharge Unit for about 24 hours.  Every conversation with every specialist who came to talk to me was overheard by the entire place.  The space assigned to each patient, divided by curtains, is approximately 8’ by 10’.  And I am being generous.  The guy in the cubicle next to me snored all night long, interspersed with shouting out obscenities.  Charming.   The little old lady in the cubicle on the other side of me was enduring the pain and confusion of dementia and she whimpered the whole time.  And periodically snorted violently.   I spent the night in contemplation and prayer.  I contemplated holding pillows over their faces and prayed for forgiveness for wanting to kill them.

Two members from entirely different families came to actual physical blows as long simmering issues exploded over their sick, elderly relatives.  Mom always did like you best.

So by the time I was sprung, everyone else had already been moved along with the indelible memory of when my last menstrual period was, if I was having difficulty urinating and if I was sexually active, among other delightful tidbits.  For, additionally, the subtext in every single solitary consult was Fat.  Did you know you were Fat?  How long have you been Fat?  Did you know being Fat can make you sick?  What are you doing to stop being Fat?  Fat, fat, fatty fat fatty.  Fat.  I am ready to stick my head in the oven, but I know if I ask where the kitchen is they will think it is because I am Fat.  I turn on the television power for the Internet and notice for the first time the screen is personalized.  Name: Marie Cooper, Room Number: 6007, Overweight.  WHAAAT?!?!  It’s even on the effing TV?!?!  Then I see this is the weather: OverCAST.  Oh. 

For a horrible minute, I thought even the Internet was on my Fat Case.

 

 

 

On the plus side, my room is spacious and bright.  I am getting great care from kind people (for the most part).  Mary Kate brings me flowers, and better still, brings me Madailein, who charms everyone by saying “Hi Da Da!” when my male tech walks in the door.  He did turn a trifle pale.  My dear friend Kathy from high school comes by.  Deacon Gail brings me Communion.  Christine comes by but I am at a test.  She comes the next day in a blizzard!!  I am surrounded by love, including virtually on Facebook with dozens of kind and encouraging thoughts.

I go for test after test, but I am still so short of breath it is almost incapacitating.  While talking to the pulmonologist, I realized that the litany of symptoms is a mirror of the transverse myelitis I had eight years ago. I suggest that to her and she happily agrees it is a possibility.  I started the IV steroids yesterday, too soon for any improvement, but fingers crossed.  On the other hand, I am feeling overwhelmed that the MS is causing such significant and crippling symptoms.  The prognosis will not be a good one.  People who have lung involvement end up on respirators.  I am so scared.

One of the people I encounter here is a jolly woman who brings me my dinner tray.  I am very down about the whole Fat thing and I say so.  She puts her hands on her hips indignantly.  “Honey, you are a lovely looking woman!  Beauty comes from the inside.  No one has a right to make you feel bad about yourself and you need to tell them that.  You need to say ‘That makes me feel bad. Don’t talk to me like that!”  I don’t care who it is!”  She shares some of the incredibly overwhelming circumstances she has struggled with and I am so touched by the generosity of her spirit.  I feel better simply from being exposed to her spontaneous kindheartedness.  It is such a gift to have someone like this placed in your path when you most need it.

And then there was the blizzard!!  A week after the Jersey Shore was devastated by Hurricane Sandy, we are hit with a pre-season blizzard.  People who have just gotten their power back after six days lose it again.  No one is prepared for eight inches of snow.

The view from my hospital room on Wednesday.  I know it says Thursday, but I am not operating on all four burners right now.   So that is a big FAT mistake, ok?!?

And the view this morning approximately 5:30:

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Choosing

I have been writing for the National MS Society Blog and just realized I should cross post here as well, as I have been getting really positive feedback.  I am so grateful when I know I have made a connection with those who are reading my posts.  May God bless us all.  Hang in there!

Here is my most recent national post, "Choosing":

This month is the seventh anniversary of finding out I had multiple sclerosis. I was, still am a little, stunned. With incredible irrationality, I was certain that I had already been through enough hard stuff, so I shouldn’t have to deal with any more. I lost an eye in a childhood accident. My husband died suddenly at 40. We had four children and I hadn’t worked full time in 15 years. I worked three jobs at first to keep our heads above water. Over the next decade I worked my way to a successful and lucrative career. This, surely, was now my time of reward for surviving all those struggles. Right? 
  

Well, as we all know, life doesn’t work that way. There is no cosmic balance sheet of adversity vs. good fortune. Sometimes a lot of good things happen, sometimes a lot of bad things happen. I was just facing another bad thing. But I didn’t want to, darn it.

Initially, I could not even say the words “multiple sclerosis.” I think part of me believed if I refused to acknowledge it, it would not exist. And I certainly would never be one of those crippled ones! I continued to function at top speed. I was a department director at a large hospital, on call 24/7, working 12-hour days. Taking care of a big house and two children still at home. One weekend I cleaned the house from top to bottom, painted all the trim and molding in my bedroom, regrouted the tile surrounding the tub in my bathroom – and landed in the hospital with a full-blown relapse. So much for MS Lite.

It was the beginning of a downward spiral. My high-powered career began to crumble. My life began to crumble along with it. I was getting sicker and sicker. Loss mounted upon loss. I became consumed by bitterness and anger.

My endlessly patient therapist provided support, encouragement and idea after idea. Mindfulness meditation, plain old meditation, prayer, literature focusing on acceptance and gratitude, books on embracing the imperfect self, affirmations and everything else she could find on coping with MS and depression.

Meanwhile, the MS was progressing and emotionally I was a furious mess.  This past December I was physically unable to even get myself to her office anymore. Refusing to give up, she offered to call me once a week and even come to me occasionally. I was devastated by my deterioration, being homebound and developing lymphedema, which has grotesquely distorted my legs and feet. Not to mention dealing with relentless, crippling pain, weight gain, immobility, skin breakdown. In the meantime, I wasn’t going to church, either. The effort it took was too monumental. My spiritual life fizzled out to almost nothing. Everything I had loved and enjoyed was slipping away. I had had it. Enough, I kept thinking, enough. ENOUGH!!

Slight glimmers of my old, fighting self occasionally bubbled up through the fog of misery I had wrapped myself in. The person who always got back up when knocked down, the person who seemed to be only a faint memory, was refusing to go away. But I didn’t want to fight any more. Full of resentment, I was tired of picking myself up.  

But that spark just wouldn’t die. An old friend from high school unexpectedly stopped by one day. When I tell you I looked like the wrath of God, I am not exaggerating. I had zero standards left. Uncombed hair, shabby, stained clothes, no makeup—it was as bad as it gets. I think I might not have smelled too good either. I was so mortified, I wanted to disappear. But he pretended not to notice. He sat with me, talking a blue streak, making me laugh and then making me cry. Pray, he said, just pray and when you can’t pray, just say “Give me strength” over and over. I had been getting this message all along in so many ways, from old friends, from virtual friends online, from my wonderful therapist, but sitting there with Albert, my kind, accepting, compassionate friend, I grudgingly conceded. I knew then I was going to choose to pick myself up once again.

I still HATE this disease. Always will. I will always miss the things it has stolen from me. And I will always be angry about the losses. But, for my own serenity, I am making more of an effort to choose to modify the anger with some degree of resignation. I will never accept having MS—it is unfair and horrible and it just stinks. But I have to live with it and my choice is to live as well as I can. To not make the effort feels like a slap in the face to all the people who love me and give me credit for being braver than I really am. The Black Moments still come. But, with a lot of help and a lot of effort, sometimes in increments as small as one minute at a time, I am trying to choose light over darkness.

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Finally, the Conference Itself

When I was a young mother I was a La Leche League Leader. I facilitated group meetings for women who were nursing their babies. I also was a District Manager, coordinating other LLL Leaders in a certain geographic area, making sure they had all the resources and support they needed. Once a year I ran an all day workshop where we would have a variety of sessions and discussion topics and occasionally a guest speaker. I worked on those workshops for months ahead of time, and we are only talking about a group of maybe twenty women. From finding a venue to planning the food to arranging the agenda, it took enormous concentration and organization.

I also was a speaker several times at the annual state LLL conference. Additionally, I have attended dozens of conferences throughout my professional career. So I have a good idea of what is involved in planning something like this. That is why I have nothing but admiration for the BlogHer team for the job they did in putting this conference together. Sure, there were a lot of attendees. Sure it was crowded. That is the curse of success. But it is distressing to hear the complaints: too crowded, lines too long, poor content. You truly have no idea how good we had it and how bad it could have been.

Finding a venue is the first hurdle. The Hilton New York is not the most glamorous hotel in New York City, but it is experienced, competent and LARGE. Ticks all the boxes right away. Most importantly, all those factors keep the cost down.

The content is decided by input from past and future attendees, so if it does not meet our needs, it is our own fault. Deciding on topics and finding credentialed speakers is another hurdle. It is hard enough to get private citizens to speak at your conference (“Where is it again? When is it again? You want me to speak on what? I don’t know, I really don’t like to speak in public.), but to get mega-stars like Martha Stewart and Katie Coric, not to mention the President of the United States? Phenomenal.

The vendors also help keep the costs down by subsidizing the conference. Yeah, there is a lot of silly junk, but that Jimmy Dean display may have shaved $25 off the cost of your ticket. And we did get to meet the Sun!

Haynes Brook, AKA the Jimmy Dean Sun/Photo by images.mitrasites.com

In addition to the above, here are just a few more of the ways this conference gave me value for my money:

• Speed dating after the opening session Friday morning. The noise level was deafening, but I met several nice women and got at least 15 business cards before I decided I couldn’t scream at anyone anymore and left.
• Parties every night with a variety of themes. Even though they weren’t my thing, the opportunity was there.
• Sessions on optimization strategies, writing, tech issues, branding, monetizing, dealing with personal issues, legalities, you name it.
• The potential to give everyone I encountered my business card, 5000 times over.

Sure, that last one wasn’t practical or even possible, but still the exposure to other bloggers was invaluable.

I am so grateful to the founders of BlogHer for all their hard work and their commitment to the power of women bloggers. The online world has changed dramatically in just the seven years since they started and they, we, are a force to be reckoned with.


 

Conference: The People & The Place

The People: The Good, the Bad, the Dumber than Dirt 

My sister and I frequently lament the downsliding of civility in our society and we usually end each confirming anecdote with a sigh and a firm “I hate people”. When I hear someone say they are a “people person” I am in peril of grinding my teeth to dust, because usually that means they are irritating and intrusive. Or impossibly perky.

One of my new passions is This American Life on NPR and the riveting narratives it reports. In one account, Shalom Auslander tells this story, portraying himself as a neurotic misanthrope. It is hilarious and well worth the 22 minutes. My favorite line in his piece, maybe of all time, is this: “Here’s the thing about people: I don’t really like them.”  My kind of guy.

Of course, I do not really hate people, I am actually fascinated by people. I only hate people who deserve it. Usually I find this is within five minutes of getting to know them.

But back to the conference… People at the conference fell into three categories: Bright and Kind, Condescending and Kind and Utterly Oblivious.

The Bright and Kind treated me just like a normal person. They were helpful and matter of fact. Their conversation was easy, interesting and unforced. It was a pleasure to meet them. I loved them.

The Condescending and Kind were helpful and pitying. They gave me sad looks and dramatically facilitated my path or moved things out of my way. They peered at my badge, which was printed with the name of my multiple sclerosis blog. “Ms. Renegade!” they would trill, "I love it!!", like I was some sort of girly feminist rebel and that was a brave and edgy thing to be. “It’s ‘M’ (pause) ‘S’.” I would correct and watch the confusion, then, sometimes, the realization, spread across their faces. It was cringe inducing.

Finally there were the Utterly Oblivious. They didn’t see me. Literally. They stepped in front of me, forcing me to stop the wheelchair short. They cut in front of me at elevators and at the buffet. At the Expo, Utterly Oblivious vendors would address Danielle and ignore me. On line for registration, they called ‘next’ and the woman behind me shot forward. The registration person didn’t bat an eye. I didn’t exist for either one of them. I couldn’t even muster up the energy to hate them, it wasn’t worth the trouble. I felt sorry for myself instead, as self-pity is a much more productive and entertaining way to spend my time.

Fortunately, most people fell into the Bright and Kind category. There were other people there in wheelchairs and I would be really interested to hear their experiences.  

The Hotel

The Hilton New York is a no-frills conference hotel. It is all about keeping thousands of people moving through their agenda-ed day. They are very good at it, but that means there are no perks, no pool, no spa. Just people moving.

On the plus side, I found the staff to be relentlessly helpful and attentive. Almost everyone has an accent, from a variety of countries, which makes me wonder whether the outstanding service is a cultural thing or a Hilton thing. And, interestingly, it is an older work force. I would say at least fifty percent is over fifty, if not more. I don’t know whether this is a reflection of an admirable hiring policy on their part or if it was not a choice but a limited employment pool. I do know there was no difference in quality of service between young staff and older. The bellman who helped me when I checked in was an Asian gentleman, tall, but slight and stooped, easily in his seventies. I was shocked that he was in such a physical job. He was so pleasant, but I never thought he would be able to wrangle my massive suitcase. He did though, seemingly with no problem. But, because of the way I was raised, I never was able to shake the feeling I should have been helping him. Later I ran into him in the lobby again and he was just as nice as could be, he recognized me and joked, with a little bow, “We meet again!”

The waiter who brought me room service the first night was a particular favorite. He wheeled my turkey sandwich in as if he were delivering caviar and champagne. He whipped the cover off the plate with a flourish, actually bowing a little while saying “…And a-here is what I have-a for you-a tonight-a, Mrs.-a Cooper!” It was unintentionally hilarious and sweet and made my night.

I am sorry to say, however, my room was disgracefully shabby considering the cost of the room was astronomical, even by New York standards. The layout was ok, but barely ok, with just enough room for the wheelchair. The shower was super, with a great bench, not even a lip to step over, and a hand held showerhead within each reach. But each shower flooded the entire bathroom with a half an inch of water. And I do mean the entire room, which might be why the woodwork around the door is curled up and rotting. The grab bar in the bathroom is also coming away from the wall.

In the room itself, there were cigarette burn holes in the carpet and the chair, even though this is supposed to be a non-smoking building. The carpet was also stained. The faux granite desk top had a one inch gap where it was supposed to be attached to the dresser top, as though it didn’t quite fit and the installer could not be bothered fixing it. The nightstand had an actual hole cut out of the front on the bottom, was scraped and scuffed and the telephone had exposed wires on the receiver. Not dangerous, just on the verge of detaching. The closet doors were rickety and didn’t meet to close properly. A Motel 6 room has more quality than this room did. Asking for a different room would have been futile, the place was packed to the rafters. I mentioned my dissatisfaction when I was checking out and they knocked off one room service charge, which is very cool. But I am still going to complain, with pictures, because of the exorbitant cost of the room. We’ll see what they do, if anything.

Finally, next post, my assessment of the conference itself, overall.


 

Third Day

Day Three in the city (Saturday) and I definitely was hitting a wall. Showering in the morning just seemed like an impossible chore. Getting dressed left me teary with the effort, especially dealing with the dreaded compression stockings. Paired with Birkenstocks that I poked extra holes in to accommodate my grotesquely swollen feet, I make quite the fashion statement.

Danielle is my champion at both breakfast and lunch, fussing over me, making a path for me, fetching me tea. Then, who sits at our table but Lynne, who I met yesterday and liked so much. More sympatico chatting. There is just nothing as wonderful as someone who agrees with everything you say.

Katie Couric is the guest during lunch and is heavily promoting her new show. She is clearly on top of the social media explosion and since I am not and I don’t understand half the references, I get pouty. Katie is soliciting topics for her show and I figure, what the heck, and I leave a comment encouraging her to do a show on the devastation that MS causes. I have to say, it was really moving to hear her talk about her husband’s death. She was 41, just two years older than I was when I was widowed, so I could really relate.

We toured the Expo after that and got lots of free goodies. At least I got some free goodies while Danielle got massive quantities of free goodies. I don’t know what she does different, but we walked the same areas and she ended up with this:

while I ended up with this:

We pause at an exclusive mattress display and one of the (absolutely freaking adorable) sales reps asks me a question about my chair. We start talking and he is so informative it is a good five minutes before I say, hey, how do you know so much about power wheelchairs?!? It turns out he used to sell them. I told him I didn’t like that the rented chair lurched forward every time I accelerated and that is how I hit the doorjam and broke the arm. He told me the chair needed to be adjusted down, that the kind of sensitivity I described was a setting. He said that definitely should be a consideration in telling them what happened. I feel like a kid going home to tell Mom and Dad I wrecked the car.

One final afternoon session and I am done in. I fall asleep sitting at my laptop and wake up just to order a hamburger for dinner. I won’t tell you how much it cost. I doze off again and wake up to put my pajamas on. Danielle has gone to dinner with friends and they all come back to our room before going to the last round of BlogHer’12 parties, which are not my cup of tea. But these girls are all sweet and cute and young, so it is good they are going to have a good time.


Coming up I will talk about experiencing the conference from the perspective of a wheelchair.

Conference Day Two

My handicapped accessible room has a walk in shower. Bliss. No struggle to drag my legs over the side of the tub. I could take ten showers a day like this.

The buffet breakfast is great, somehow this hotel gets the best fruit, I still remember that from two years ago. Now that I have actually written that down, it strikes me how sad that truly is, that I have been looking forward to fruit for two years.

I squeeze my way into the main ballroom, looking for a table it will be easy to pull up to in the wheelchair. The tables are packed so closely together it is really a challenge to even get very far into the room. To be fair though, they have to fit over 4,000 people for a meal, of course they have to pack in the tables. I find a spot with four nice ladies who assure me there is space with them. I can only manage a plate with one hand, so I am going to have to put it down and go back for some tea. Libby, a lovely young transplant from Australia to New York, instantly pops up to get tea for me! SO kind! Such a simple gesture, but one that makes an enormous difference to me.

As we’re chatting, she notices my knitting bag, which I made with all kinds of pockets to keep my projects organized for next to my chair at home. It turns out she not only blogs about holistic life, but also about crafts, here. She loves the bag, which I am a little embarrassed by because the sewing-themed fabric is somewhat on the corny side. Ok, it is totally on the corny side. Within minutes she has photographed it, edited the picture and posted it on her Facebook page with a link to my Etsy shop! It garners several “likes” and comments in less than ten minutes. This is so cool!

I meet several very nice people through a speed 'dating' exercise, an activity that is not easy to pull off when you have a group of several thousand, but the BlogHer organizers are nothing if not resolute about the attendees getting their money's worth.

I am particularly impressed when I meet Lynne, who actually is not a blogger. But her daughter is and Lynne told me she decided she just wanted to learn as much as possible about the process and social media. I am awed. My own mother was barely aware I knew how to write, never mind that I wrote a blog. In just that few minutes, Lynne and I discover we also have similar political leanings among other things, but it is speed dating after all and we have to move on before I have a chance to ask her to marry me. (Oh, just kidding; no need to go to Chic-fil-A.)

Next was an interesting workshop on 'Turning Your Blog Posts into Publishable Essays'. The room is packed and cramped and hot and I have to fight to keep awake, but that is no reflection on the content, which is professional and encouraging.

Then it was time for lunch and Martha Stewart, who was to be interviewed by one of the BlogHer founders. Martha Stewart is such an icon, such a pillar of creativity and symbol of success that I don’t think she was even a real person in my mind. Sure, we have read of her difficulties as well as her triumphs, but it was still so abstract. Even her name is like one word. I don’t watch usually television, but I did catch her on an episode of Finding Your Roots. She was pleasant, but still MarthaStewart, a brand. So I was mildly looking forward to hearing her during lunch. Never expected to be completely captivated.

For one thing, she looked freaking awesome, wearing persimmon slacks with these great espadrilles to match. Such a gorgeous color. She was funny, relaxed, informal, down to earth, engaging, and clearly interested in the specific group she was addressing. The sound wasn’t that great, obviously because of the sound system. I overheard the staff dealing with it, so I knew it was being addressed. But all of a sudden someone rudely shrieked out a complaint while she was in mid-sentence. It was startling and out of line. But Martha did not miss a beat and, smiling, even though she had been interrupted, she immediately responded that she agreed the volume needed to go up. Ironically, that instant it did.

It was her birthday and, with a hint of a wink, she said she had agreed to speak only after she was assured everyone would sing her Happy Birthday. She was savvy and insightful discussing technology and business growth. She talked about her own blog. She was great, I just loved her!  

Lunch was also a buffet and the lines were so long for the food I just skipped it and went straight to a table.  Met up with Maura, my delightful contact person from the National MS Society.  Many thanks to her, as she is the one who ended up getting me my lunch.  Another example of how helpful people can be.

The rest of my workshops were good but I was running out of steam. Then I bumped into the doorjamb going into my room and broke off a piece of the foam rubber arm of the rented wheelchair. Oooops. So now I am sick about it, the arm will have to be replaced. It is not big, but it probably costs a mint. Oh boy.

Finally, Danielle came in from Connecticut, my roomie from two years ago. I nicknamed her Hurricane Danielle because she is such a whirlwind and the real Hurricane Danielle was in the news at the same time as the conference in 2010. She got us dinner and now we are being wild and crazy, sitting around the hotel room in our pajamas writing our blogs. It doesn’t get better than this. :)

The daytime view from my room.  I LOVE New York. 

Born and raised here, but I never get tired of it.

Conferencing With BlogHer

I belong to a web site for women bloggers called BlogHer (see the badge at the top of the column to the right). Started by a group of women in California as a blogging conference in 2005, BlogHer has become a huge online community, with over 20,000 registered blogs and 40,000 visitors per month. The conference has grown from 300 attendees at the first one in 2005 to over 4000 just seven years later.

The best part of BlogHer for me is the wildly divergent subject matter and the accompanying respect for where people are at. On the website’s opening page today the blog posts range from a woman discussing her experience of mothering a child with cancer to a how-to on slicing an onion, and there are appreciative readers of both. There are recipes and laundry tips, but deadly serious discussions about world issues as well. There are Mommy blogs and infertility blogs and bereavement blogs and shopping blogs. There is literally something for everyone.

I have been honored to have two of my blog posts featured on the national site over the past year. I was so excited! It was tremendous exposure for my writing and flattering to have been chosen out of thousands of posts uploaded onto the site every day.

The conference is a extensive undertaking, geared toward improving the blogging process from every angle possible, content and technical, and how to maintain momentum and exposure. I attended two years ago when it was in New York. They rotate location every year, so I figured I would jump at the chance, as it was unlikely to be here again soon. It was a great couple of days of networking, picking up ideas and renewing enthusiasm. When it was announced that this year’s conference would be in the city again, I was disappointed, because there was no way I could go, financially or physically. Then, financially, a totally unexpected opportunity arose. But physically, I really hesitated. My mobility has taken a serious downturn over the past two years. If I go anywhere, I have to go with so much STUFF! But my friends and family really encouraged me, and offered support and help. So I registered and the weeks ticked by.

Last week everything started falling apart. I am really not feeling well and my anxiety about traveling, even such a short distance to New York, began to go sky high. My daughter in Texas was supposed to come in and we were going to do a girls weekend in the city, but she cancelled at the last minute. That took the heart right out of me, but my friends and my other daughter Mary Kate again persuaded me to do this for me. Then, the day before I was supposed to leave, my power wheelchair batteries failed and there was not enough time to order a new set. While I sat and wept with defeat, Mary Kate went to our local medical supply company and rented me a power wheelchair. Carol, a dear friend who runs errands for me and just generally brightens my life, drove me in to the city

So here I am.

I got here in time to watch the live feed from the White House and got goose bumps at the cheers that went up for the President (I will post the video as soon as it is available). I registered, tooled around the Expo center and then came back to my room for a $54 turkey sandwich from room service. After that I conked out for two hours and now I am probably awake for the rest of the night. Tomorrow the conference sessions start and the key note speaker is Martha Stewart. Danielle, my powerhouse roomie from two years ago, will be here and will stay with me the rest of the time.

I am only here because of the support and encouragement and hard work of about a dozen people. I owe it to them to have the best time possible. And I will. :)

 The view of Sixth Avenue from my room.

I am totally in a New York State of Mind:

Oh boy, talk about dying and going to heaven!